tag:blogger.com,1999:blog-32259058410203149652024-03-05T14:03:20.263-08:00Extraordinary Life of an Ordinary WomanHeidihttp://www.blogger.com/profile/16471007237878095118noreply@blogger.comBlogger103125tag:blogger.com,1999:blog-3225905841020314965.post-79255823476922503572012-05-10T13:40:00.000-07:002012-05-10T13:40:31.954-07:00Casting a Wider NetTo those of you that have followed my blog, thank you and please continue to follow. To those of you that may have just stumbled upon my blog please know that it doesn't end here. I have for a while put most of my blogs here, and some on my website, I now have decided for a number of different reasons, the biggest one being to reach out to as many people who are interested in knowing my story, where it started, where it is now, and where it's going...to post a larger portion of my blogs directly to the Brain Matters website at <a href="http://brain-matters.org">brain-matters.org</a>. I will occasionally post here, but more often I will post there <a href="http://brain-matters.org/heidis-blog/">brain-matters.org/heidis-blog</a>. I also Tweet at brainmattersorg should anyone who's following or has stumbled onto this blog care to find me there. Thank you, HeidiHeidihttp://www.blogger.com/profile/16471007237878095118noreply@blogger.com4tag:blogger.com,1999:blog-3225905841020314965.post-37903465561147103192012-05-10T13:25:00.000-07:002012-05-10T13:27:15.212-07:00Is There Anyone Else Out There?When I was first diagnosed with a brain tumor over 21 years ago, it wasn’t something I had heard a lot about. Generally, if you heard about someone else you knew being diagnosed with a brain tumor, it wasn’t something you heard much more about afterwards because that person wasn’t given much of a positive outcome, and didn’t live much beyond your hearing this dreadful news. As a patient, it was quite like this “we’re sorry to have to tell you this”, “we think you should get your affairs in order”…”my affairs, what do you mean my affairs?” You were offered surgery, chemotherapy, radiation, and after all of that, you were given the possibility of a few months, maybe a year. If you didn’t choose those options, you were given a few less months, maybe you would have a few less scars, a bit more cognition, and maintain a bit more of yourself, but you wouldn’t know if you didn’t try-so you tried. There have been improvements made, especially in surgery, and some cancerous tumors are more treatable now than others were then. Twenty one years ago, it was just the beginning of the MRI, it wasn’t as easy to scan a tumor, and you didn’t really know what kind of tumor you had until you had surgery to see if it was in fact cancerous, or the winner in this dastardly game…”benign”, which could still cause a great deal of damage, but there was a greater chance that this would be able to be removed entirely, and not grow back. The surgery to remove this could be bad…very bad, but the aftermath, would at least be…a life.
Without going into my whole story because that has been quite told here in this blog, yet another thing that was different back then, and different for me, was that I felt like a stranger in my own world. I knew there was no one who understood many of the things that I felt, or had gone through. There were hospital support groups, but these groups were for people who were in the middle of treatment, they were not yet anointed as survivors. They hadn’t gotten to the point of worrying if they would live another year because they were just concerned if they would make it through their most recent round of chemo, or if they would make it to Christmas, or Thanksgiving, or their next birthday. They weren’t thinking if they would be hired to work, they weren’t even thinking of working; these people were just thinking if they could get from the hospital to their house without throwing up, and if they would ever be able to be well enough to think about working again. People like myself must have been out there, but where were they? I wished I could find them. I looked for them. I talked about my situation to my friends, and they listened, and they felt my pain, but depending on what age I was, depended on how much interest or patience my friends had for my thoughts and feelings at any given point in the timeline. I was old before my time. At thirty, not many friends had much time for my sadness. At fifty, more sad friends, had more time for my sadness-but even so, having lived alongside a cancerous brain tumor for twenty plus years brings some very individual thoughts.
I’ve been out there talking and walking to make people aware of this cause and the need for more funding and research. I’ve met people who have been affected by it, but mostly I’ve told them my story, there hasn’t been the time or opportunity to exchange stories. I’ve heard stories, but not any survivor stories. Most of the stories I’ve heard have been from people who have been left behind. This is another very important side.
This weekend I will be participating in ABC2 Race for Hope, I’ve had the chance to talk to other survivors prior to my boarding the train down to Washington, D.C. I wanted to talk to these survivors, mostly because I want to interview them for the documentary film that Brain Matters continues to create in connection to the walk I took in October. I want to hear other survivor stories. I want to know what they’ve gone through, what their backgrounds have been, their family lives, and what kind of tumors they’ve had to deal with, and the therapies they’ve endured. In all this time, not until last week had I had the chance to talk to other cancerous brain tumor survivors. I felt like Free Willy when they released him into the ocean to join other whales, or Elsa the Lion in Born Free when she was let loose to join other lions. It’s hard to explain, but I felt like I met my “people”. It was amazing. I hung up the phone each of the times I spoke to these survivors and cried. After all these years, I was not the only one out here feeling the things that I feel. I can’t wait to be at the Race on Sunday…there are supposed to be around 300 survivors-they’ve all lived a different number of years since being diagnosed, but I can’t wait to meet more people who have lived through a lot of what I have lived through. I think a couple of other things: without the Internet, these kind of connections would never be possible, these 300 people are coming from many different states. It takes a lot of states to collect 300 brain cancer survivors. Last I think…just that…there will be over 12,000 participants in the Race for Hope; they’ll consist of supporters, family members of people who have died, and only around 300 survivors. Yes, there are other survivors out there, this isn’t everyone, but statistically the difference between those that are here, and those that aren’t, is extraordinary. There needs to be more research and funding for this cause. There need to be more on the “surviving” side. But still that having been said, I’m glad to have found new friends…other lions in the jungle.Heidihttp://www.blogger.com/profile/16471007237878095118noreply@blogger.com1tag:blogger.com,1999:blog-3225905841020314965.post-31306159106255791082012-03-20T07:24:00.002-07:002012-04-25T06:54:42.122-07:00Often Things Can Seem Like One Thing, But Turn Out to be Something Else...Something BetterTruly it can be in the way one chooses to look at things. I recently had the intention of participating in a local Brain Tumor Support Group, I instead sauntered in to the Aneurysm Support Group-I had no idea that this was the case until after I had spent a significant amount of time at the group. I arrived on time, but when I arrived the group was already seated and had already started talking…it was a group of about 30 people. I asked the woman standing near the front door when I arrived if this was the Brain Tumor Support Group? She said “yes”, but apparently she mustn’t have heard me. She pointed me in the direction of a seat in the back of the room. I said a casual “hello” to the group and I began to listen. I listened as these people of all ages, some with young kids, some with grown kids, some having experienced an aneurysm many years ago, some having just had one a few months before attending this group-they talked about their experiences. I listened and I wondered if anyone in this group had a brain tumor. I listened and I wondered if this could be a mixed group, or if this was only one kind of a group? I listened as they talked about their headaches and their seizures. I listened as some people talked about their speech inabilities, and how they had trouble walking. Some people spoke about how they had trouble remembering words, and how they felt sad about feeling dependent on their loved ones, and their frustration about not being able to drive following their surgeries. Many of them had the fear of getting another aneurysm in the future and what that would mean to them and their families if it were to happen. I think what many of these people were afraid of, but weren’t talking about, may have also been the fear of dying. Most of the people that were telling their personal stories had had surgery before their aneurysm had burst, but the fear of getting another aneurysm and or what additional side effects might be in their future were in most everyone’s thoughts. I listened to their stories and I found them to be so interesting…it’s as though we were neighbors on the same “medical block”. <br /><br />I didn’t volunteer to talk about my story-I thought it would be disruptive…I was mostly sure at this point that there weren’t any brain tumor patients in the group. I was definitely feeling a bit out of place-I was similar, but not the same. Then the special guest of the evening got up to speak. The special guest was a Neurosurgeon- he specialized in Aneurysm Surgery; his name was Dr. Langer. Now, I was absolutely sure I was in the wrong support group. He began to speak. Their were a couple of things that struck me about this doctor: I found him to be engaging, interesting, insightful, and compassionate…okay, that’s way more than two things. Dr. Langer not only spoke about aneurysms and the brain in a way that was easy for a non-medical person to understand, but he also said something that I found to be quite profound. He told the group, (many of whom were apparently his patients already), who were asking him about their fears…fear of getting another aneurysm, their concerns about still having headaches, forgetfulness, speech problems, many of the things they had already mentioned earlier among themselves, many of the things that I myself deal with as well. He said this to the group <span style="font-weight:bold;">“you know…what’s interesting, is that cancerous brain tumor patients often have these same symptoms, but they don’t live long enough to worry about them”</span>. This was an amazing statement! It’s so true, I’m often sad about my deficits, but the fact is that most brain tumor patients don’t live long enough to worry about them. I wanted to raise my hand and say, “I’m that patient”, but I thought it would be too distracting. I couldn’t help wondering if this was why I was meant to saunter into the wrong room? Was it to hear this statement…this scale of relativity? I wanted to spread the “word”. I thought about the potential to help some of these patients. When it came time to leave, I mentioned to one of the nurses at the front door that I apparently was in the wrong Support Group, that I actually had been looking for the Brain Tumor Support Group, but that I found this group and Dr. Langer to be very interesting. She helped me find where she thought the other support group was supposed to be, but everyone there had left already. The Brain Tumor Support Group meets monthly, so I’ll try to go again next month. Who knows what I will learn there. When it came time to go home, after checking out the other meeting room, I “coincidentally” stepped into the elevator with a couple of the women at the Aneurysm Support Group. They both had told tearful stories about their worries for the future of their health. Their stories had really touched me. One woman was a young mother of two young children who had only recently had her surgery. The other woman had had her aneurysm surgery a year ago, but was still having a lot of trouble remembering words and places, and was experiencing really bad headaches-she was wondering how long it was going to continue. I wasn’t sure if I should introduce myself, but I was feeling quite energized by the meeting. I decided to talk. I said to them, “Hi, I just came from the same support group you were both at, and I heard the both of you tell your stories. I didn’t realize until after I had been in the group for a while, that I actually had stepped into the wrong meeting. I’m a brain tumor patient and my intention was to go to the Brain Tumor Support Group, it was my first time here and I wasn’t sure at first if I was in the right place or not, I thought maybe it was a mixed group at first-once I was sure it was just for aneurysm patients I didn’t want to disrupt the group by walking out. I wanted to tell you both that while I feel many things we’ve been through are different-I feel that there are definitely quite a few things that are the same, and I think I understand a lot of your fears and anxieties. I haven’t had an aneurysm, but I’ve been living with a brain tumor for over twenty years, I’ve had two surgeries, and two courses of radiation. I’ve had many of the same health issues that you’re both dealing with and some different ones…the forgetfulness at times, headaches, my tongue is paralyzed on one side, I’m deaf in one ear, I have trouble swallowing, one of my vocal chords is paralyzed, but I’m still here. I’m still talking. I still hear you when you speak. In these twenty plus years I’ve seen my two kids go from small to not as small. I work. I’m still living. I don’t know if that helps you, but I thought I would mention it just in case it might”. They both said to me “Wow, thank you so much, you would never know you had all those physical things, thank you so much for telling us that”. We said goodbye to each other, and I said to myself “wow, this has been quite an evening, I can’t believe I would have experienced anything more meaningful at the meeting I was intending to go to”. <br /><br />I’m glad I stumbled into that meeting…these things like so many things, don’t seem to happen by accident. This support group supported me by making me feel that all that I still deal with…isn’t a curse, it’s a gift…I’m still here in the world… getting to deal with myself, while there are others that I’ve met along the way who are no longer in the world. <br /><br />Dr. Langer’s statement about brain tumor patients generally not being able to live long enough to worry about their symptoms, just reaffirms the need to do all we can do to bring attention to the need for more funding and research for brain tumors. <a href="http://brain-matters.org">Please donate</a>. When I started my walk back in October of last year and filming that walk, I knew that would be the beginning…the first step. I’m now in the process of raising additional funds in order to continue filming; we want to film other survivors, other patients and their families, and to tell their stories. We want to enlighten people about what’s going on in the world of Brain Cancer Research, there are some amazing things happening. We hear about breast cancer, prostate cancer and other illnesses, we hear about them because people live long enough to talk about them. We don’t hear as much about Brain Cancer because we don’t generally live long enough to worry about our symptoms…or talk about the cause. We have to work together to make that happen!Heidihttp://www.blogger.com/profile/16471007237878095118noreply@blogger.com1tag:blogger.com,1999:blog-3225905841020314965.post-16603539146059145402012-03-09T14:36:00.003-08:002012-03-17T15:10:32.218-07:00The Strength of WordsI just had a moment, more than a moment, a weekend really, where I thought I had lost my blog. This blog is a compilation of stories and thoughts that I’ve written over the last four years…four very intense, life changing years. I have of course saved most of these stories-these words, but the thought of them no longer being out there for other people to read if they wanted to read them made me feel as though part of me had died. I realize that this may seem overly dramatic to some, but these stories and thoughts are “me”, they are not fictional, and the idea of them disappearing, was somehow as though I had disappeared. Also, the thought of having to re-up the entire blog, was another project that I would have to add to my ever increasing “To Do List”, and that too, made me feel like I might just disappear…or need to. There have been days lately, with all that I’m trying to do, that I just wish for one less thing…not one more. The blog had disappeared because it was attached to an old email address that after ten years I had needed to change. I thought that all the accounts, credit cards, and necessary contacts that required the new address…had the new address, but there’s always that one something that falls through the cracks, my blog was the something. Most fortunately, I was able to retrieve it. This retrieval was not easy. They don’t make these things easy. The internet giveth, and it taketh away. It is hard for instance to find an actual person to speak to, instead you are left emailing, which is frustrating and time consuming. These emails are signed with a name, it seems like a person has connected with you, but after enough back and forths, one comes to doubt whether that person actually exists. I was not certain for an entire day if I would be able to retrieve my lost information or just my lost “domain name”. This was a BAD DAY. But, in the end, after very little communication, limited help, and a decent lump of cash…the entire blog was retrieved…name and all. This was an AMAZING DAY. This was the giveth part of the taketh away. This story has been shortened for those that may be reading it, and are patience impaired about such “internet matters”, but I feel the core of it has been conveyed. This event made me think of a few things. It made me think of all that I’ve written and what it’s meant to me. It made me think a bit about how as much as I’ve felt at times (and I’ve mentioned this), that nothing can be better than being able to express your thoughts through words, I have to say that during this most recent “blog event”, where I was virtually forced to write while dealing with my “internet blog problem”, the thing I wanted to do more than anything was to speak my words…yell my words-not write them, and yet writing was all that I was being allowed to do. At times, it’s good to have a voice to one’s words, to be able to convey your supreme unhappiness, anger, and disappointment. This is something that can’t be expressed as fully or as well without…let’s face it, a little bit of volume. Perhaps we want what we want, when we want it. No news flash there, I guess. And lastly, I think of all those words and sayings I’ve read over the years, not just these four years, but the many years that I’ve been dealing with my health issues-the words that I’ve read that have inspired me and motivated me, the words that have helped me feel as though I wasn’t alone, or have given me the impetus to keep on, keepin’ on. These are some of those words:<br /><br />“If opportunity doesn’t knock, build a door”<br /><span style="font-weight:bold;">-Milton Berle</span><br /><br />-Never doubt that a small group of thoughtful, committed, citizens can change the world. Indeed, it is the only thing that ever has.”<br /><span style="font-weight:bold;">-Margaret Mead </span><br /><br />"Never bend your head. Always hold it high. Look the world right in the eye." <br /><span style="font-weight:bold;">-Helen Keller </span><br /><br />"Strength does not come from physical capacity. It comes from an indomitable will." <br /><span style="font-weight:bold;">-Mahatma Gandhi </span><br /><br />"Greatness lies not in being strong, but in the right use of strength." <br /><span style="font-weight:bold;">-Henry Ward Beecher</span> <br /><br />"He knows not his own strength that hath not met adversity." <br /><span style="font-weight:bold;">-Ben Jonson </span><br /><br />"There is no limit to what you can imagine. And with commitment, with effort, what you can imagine you can become. Put your mind to work for you. Believe that you can do it. The world will tell you that you can't. Yet, in your belief you'll find the strength, you'll find the ability, to do it anyway." <br /><span style="font-weight:bold;">-Ralph Marston</span> <br /><br />"You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, "I lived through this horror. I can take the next thing that comes along." . . . You must do the thing you think you cannot do." <br /><span style="font-weight:bold;">-Eleanor Roosevelt</span> <br /><br />"Above all challenge yourself. You may well surprise yourself at what strengths you have, what you can accomplish." <br /><span style="font-weight:bold;">-Cecile Springer </span><br /><br />“I alone cannot change the world, but I can cast a stone across the waters to create many ripples.” <br /><span style="font-weight:bold;">-Mother Teresa</span><br /><br />"No one has ever become poor by giving."<br /><span style="font-weight:bold;">-Anne Frank</span> <br /><br />“It is not length of life, but depth of life.”<br /><span style="font-weight:bold;">-Ralph Waldo Emerson </span><br /><br />“Success comes from knowing that you did your best to become the best that you are capable of becoming” <br /><span style="font-weight:bold;">-John Wooden</span><br /><br />“Be the change that you wish to see in the world” <br /><span style="font-weight:bold;">-Mahatma Gandhi</span>Heidihttp://www.blogger.com/profile/16471007237878095118noreply@blogger.com0tag:blogger.com,1999:blog-3225905841020314965.post-34310276765797258232012-01-18T10:06:00.001-08:002012-03-17T15:09:04.873-07:00A New York StoryI haven’t blogged in a while, but this seemed like a story worth writing about…there are just those moments that you feel should be committed to paper…or whatever it’s called that we’re writing on these days that seems paper-like.<br /><br />I was meeting my friend Lisa for lunch a couple of days ago, she and I have known each other for close to twenty-five years. She and I knew each other before I had my first daughter, before I was diagnosed with my brain tumor, before my first brain surgery. She helped bring me home from the hospital after the surgery on the day that I was released. She also helped me raise money for the walk I’ve just completed. We’ve known each a long time.<br /><br />I was waiting for her in a downtown restaurant…a “bistro”, I was checking my Blackberry for emails, I texted her to let her know I had arrived, and no sooner had I done that, when I looked up and saw that she was coming through the front door of the restaurant. She rushed over to the table, put her stuff down, and asked if I could order her an iced tea while she went to the Ladies Room. She was in a rush because she was coming from work, which is in Brooklyn. She had driven into the city, and she only had so much time before she was going to have to drive back out to Brooklyn-we wanted to make the most of this time we had together. I ordered the iced tea, and no sooner had she sat down, when the guy…a kid really, sitting next to me on my left side <br />“my deaf side”, asked if I could “just read him a paragraph from an article in the New York Times”? I thought it was a bit odd, but I thought, “why not, and how long, and how bad could this be?” So I did. Lisa was reading the menu to figure out what she wanted to eat, so it wasn’t like it was taking time away from us. I wasn’t really absorbing what I was reading. After I was done reading, he said, “thank you, I just wanted to make sure I was reading it correctly”. I do remember thinking that he seemed to have a good grasp of the English language. I wondered why if he spoke English, and probably read English, did he need someone to read something to him…but whatever. Then I noticed that he was wearing a stethoscope around his neck. At this point Lisa had finished looking over the menu and was ready to order. The waitress came over to ask if we knew what we wanted. I had decided before Lisa arrived what I wanted, so we gave the waitress our orders. I began to talk a bit to this guy…this kid. After I mentioned his doctor paraphernalia, he brought our attention (Lisa was listening now too), to the fact that he was wearing a white lab coat with the scripted “NYU Hospital logo” on it, as if this would tell us all we would need to know. He said, “I’m a Resident at NYU Hospital”. I said, “Oh really?” My first thought was that the restaurant we were eating at was quite a long way from the hospital. My second thought was that the logo was not the NYU hospital logo I was familiar with…not at all…not one little bit. How many people are fortunate, or unfortunate enough to know what the NYU Hospital logo really looks like? The third thing was that it was odd that a doctor…excuse me a Resident would be dining with his stethoscope around his neck if this were in fact their down time, and it must have been his down time, because as I said…we were quite a way from the hospital. The restaurant we were all dining at was in Greenwich Village, NYU hospital is all the way near 32nd Street and 1st Avenue…this is a long way to travel to eat…especially to eat alone-this is about 20 downtown blocks and several more blocks going towards the Westside of Manhattan. He told Lisa and I that he was a Psychiatric Resident. Did this mean he was studying Psychiatry, or that he was a resident in the Psychiatric ward? I asked him how it was to be a Psychiatry Resident? He said, “that’s a big question.” I asked him as a “Psychiatrist” what his feelings were regarding death and dying? He talked a bit about that; he seemed to have some real thoughts about this subject. He thought it was better to live every day to its fullest, and that dying is what was hard. We agree about that…this makes me think he had some kind of information or experience in this area. Was he a doctor or did he just play one on TV? Was he an actor? We were after all, in New York, not far from New York University, which has an excellent theater school. He continued to talk, and I continued to think. I noticed that he had a Martini on the table, and that he had finished half of it. I asked him about his Martini. He said, “he’s off of work”. I thought, it’s lunchtime, and he’s a Resident, but maybe he’s had a very tough day, or maybe he’s just completed a night shift. But wouldn’t he prefer to sleep? I brought up my walk, and my brain tumor…the topic of “Psychiatry” and the “brain” leads the conversation there-he doesn’t seem all that familiar with much of the terminology I was using, but that doesn’t mean anything, often I’ve found myself knowing more about this area of the anatomy than other doctors-it’s a specialized field. I suggested that he take a look at the Brain Matters website. I thought you “never know”. I thought he may be crazy, but he may be connected, or he may be crazily connected. At one point in all of this, I asked him how old he was, and he told me he was 26. He told me he had gone to school 4 years as an undergrad, 4 years as a medical student, and now he was in his first year of Residency…the math worked. He asked me how old I was, and I told him-he found that hard to believe, so either I look better than I think I do, or he was looking for a donator of his own. Finally after what was probably 15 or 20 minutes of our talking, (Lisa chimed in now and then to the conversation with comments and questions of her own), I said, well “it’s been good meeting you, but my friend and I have only so much time, so we’re going to get back to our lunch.” He said “okay, I’m just going to go out for a cigarette, will you vouch for me if they come back and want to know where I went, and let them know that I’ll be back to pay the bill?” I said, “first of all, as a doctor you should know that you shouldn’t be smoking cigarettes, and secondly, I can’t vouch for you, I don’t even know you, why don’t you just pay the bill and then go out and smoke the cigarette?” He smiled. He then grabbed his nice designer shopping bag that he’d apparently brought to lunch with him-inside it was the newspaper with which he had started our conversation. As he was on his way out the door, both Lisa and I looked at each other and said, “he’s not coming back, and he’s not going to pay the bill!” He walked out of the restaurant. I looked out the windows of the restaurant onto the street. You could see everything from where I was seated. Our “Resident” friend went out and lit his cigarette, but he didn’t stay at the corner, he had no intention of coming back inside, he kept on going. Almost as soon as the Resident left the corner, the manager left the restaurant and took off down the street after him. A few minutes later when the manager returned, I asked if he had caught up with the doctor? He said “No, but he had caught up with his shopping bag which he had left on the street.” I asked the Manager what was inside the bag. He told me that there was only a newspaper inside. I guess our “Resident” thought that he would easily be able to pick up a new “meeting device” somewhere else. <br /><br />So he wasn’t a doctor. Maybe he was a mental patient…a “psychiatric resident”, maybe he was an actor; maybe he was just someone who didn’t have enough money to pay his bill? This was funny and yet not, all at the same time. To me there were two interesting things about this meeting. The first thing was that if he had connected with someone who hadn’t come to know as much about hospitals, doctors, and medicine as I’ve come to know over the years, that perhaps his outcome might have been different…maybe better for him…maybe not. The other interesting thing is that despite his obvious lack of credentials, I’ve met doctors who have had official credentials, and demonstrated less sympathy, compassion and knowledge. This makes me wonder who he really was, and what his real story was about. It also makes me think about why things happen. Guess there were actually three interesting things about this meeting. Ah… New York!Heidihttp://www.blogger.com/profile/16471007237878095118noreply@blogger.com2tag:blogger.com,1999:blog-3225905841020314965.post-67531775777993226552011-10-08T14:16:00.000-07:002011-10-08T14:18:37.378-07:00Some things can’t be expressed on film or video blog. Some things you have to write down.When I was speaking at Fairfield Ludlowe High School yesterday one of the students asked me how I thought what I’ve been through had changed me? This of course is a huge question. It would take almost an entire class to answer just this question. But I think if I had had the time to think about it beforehand, the way I’ve had since he asked, I would say that it has given me the understanding of the power of the ability to “keep on keepin’ on”. If today is not good, tomorrow may be better, if you don’t feel what one doctor is saying to you, then find another doctor. If the weather is bad today, then there’s the possibility it’ll be better tomorrow. This walk that I’m taking symbolizes all of that to me. So far I’ve had terrific weather, that’s been great, but I’ve also gotten lost and my cell phone has run out of battery power. Things that I was hoping would happen didn’t, but I keep on keepin’ on. Perhaps, I always had a bit of this in me, but I know I’ve needed to have it for all that I’ve been through. And so…I’m, walking the walk, which in some way or another I feel I’ve been doing for some time now, even before I took that first step out the door this last Saturday. Check out www.brain-matters.org, to learn more about the walk.Heidihttp://www.blogger.com/profile/16471007237878095118noreply@blogger.com4tag:blogger.com,1999:blog-3225905841020314965.post-54533237946359268672011-08-15T06:42:00.000-07:002011-08-15T06:45:13.219-07:00You Must Row With The Oars You HaveThis walk is about so many things for me…
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<br />It is about what I’ll be able to give to others…and to a cause that I know needs more funding…and that not many other people either know about unless they themselves or someone in their family has been effected by a brain tumor. In fact, even if they do know about brain tumors, they may not know that there’s such a need for more funding or research. This walk is also about something else. This walk is about achieving something…it’s about the feeling of overcoming something. It’s about being able to feel the feeling of gain after so many years of feeling the feeling of loss. I have the potential to feel strong, and the fact that it’s not just for me and it’s something that I’m also able to do for others, just makes it feel like that much more of an accomplishment.
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<br />In the research I’ve done about people who have had life threatening or life altering illnesses, the feeling of loss is quite normal, but knowing about its normalcy doesn’t make it less painful. You’re not sure what to do with these feelings. Recently a few “normal” things happened to a few friends of mine. A couple of my friend’s fathers died. Another friend’s friend died…he wasn’t that old. All of my friends were going to the funerals. I haven’t been to many funerals. Another good friend of mine on the 5th anniversary of her husband’s death was going to visit a place the two of them went to all the time together. I liked the idea of this; it got me thinking about these ceremonial rituals. There was something that seemed important to me about them. I didn’t grow up in a family that had many passing rituals. I’m from a small family and fortunately most of us are still hanging in there. It’s not like we haven’t had our share of sad times, we have, but we’re still here, that too says something about us I think-about our fortitude, our stamina, maybe even a bit of luck. I’m not entirely sure what it says, but it seems to say something…it’s another blog for another day. We do have our rituals, just not for passing. We celebrate birthdays, anniversaries, Thanksgiving, but “passings” or “loss”…these occasions I’m not so familiar with…except for our pets, we have had burials for our pets. As I mentioned, we certainly had our share of bad things that have happened, but we were more of the attitude that you kept on keepin’ on, and so we did…so I’ve done. For many years with the exception of a few friends who’ve lost a parent early on, or in very extreme cases a friend of theirs, I was one of the only people among my group of friends that has dealt with so much personal loss so early on…now that we’re all getting older, everyone is catching up. Lately though, I’m seeing more of the ceremonial side of things, and it made me think.
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<br />I decided to anoint a small beautiful glass jar that I have; this jar would now be my “Jar of Loss”. I had some sea glass that a close friend of mine has sent to me over the years from places she has traveled to from around the world…she knows I love sea glass. I chose a specific piece of sea glass to honor every loss I have experienced, and I placed it in my new Jar of Loss. There is a piece of sea glass in this jar for every loss that has deflated me, every person that has left me, every ability I used to have that I no longer have…my hearing in one ear, my vision in one eye, my voice that I feel has been altered, the house I loved, the company I created but couldn’t keep working at because I had to have surgery and radiation therapy, every thing that I felt I had lost but could not control losing. Some how this made me feel better; it has made me feel ready to move on in a stronger way. This jar gives me the ability to see these things, to have them with me and yet not, to look at them in a physical kind of way if I wish to, but not feel the same morbid sense of sadness that I had before…it’s different and it feels better.
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<br />This walk is a way to feel a renewed sense of emotional strength. I will remind myself of that on the days that I’m walking the 250 mile distance starting October 1st from my house to Boston, when I feel I can barely take another step forward. Yes, it’s been exhausting planning this walk, and yes, I wish I had even more time to plan things, but in the end I need to leave when I need to leave. I need to move on to the next phase of my life and to the next phase of the non-profit charity that has taken me so long to create. Most of my life I have felt physically strong, but the months following surgery and radiation I felt weaker than I had ever felt in my life. I wondered if I would ever feel like myself again. Then I realized, I won’t feel like that self anymore, I will feel like a different self. Why wouldn’t I feel different after what my body has been through, and also the fact that I’m older. But I have learned to row with the oars that I have. There are many people who don’t survive having a brain tumor. There are many others that do survive but are never able to work again or talk again, or remember anyone, or do many other things-but there are still plenty of us who can. There aren’t any others I believe that have made a walk of this length, and at the same time have tried to help bring awareness to the very reason that has caused them tremendous loss. I look forward to being able to walk and to blog my experience every day, and to posting it on the <span style="font-weight:bold;">Brain Matters</span> website so that I can look back on it and remember my experience and my accomplishment. I also wanted to be able to do this, so that my family will be able to look back and see this when I’m older or when I’m not here one day…a long time from now of course. There have been many concerned friends and family members since I decided to make this trip that have tried to convince me not to make it, and I would not budge. I understand that they’re concerned, considering my medical history, but there have been so many things that I have felt that I’ve lost through no choice of my own…this is something that I’ve actually chosen to do. I’ve taken two years to plan and coordinate this walk. This is about Giving Back and Getting Back. If anyone wants to join me, please do, I’d be glad to have you. To follow the walk and know where I’ll be on what days go to <a href="http://www.brain-matters.org">www.brain-matters.org</a>
<br />Heidihttp://www.blogger.com/profile/16471007237878095118noreply@blogger.com7tag:blogger.com,1999:blog-3225905841020314965.post-14000263971884734652011-06-29T14:03:00.000-07:002011-07-15T05:25:40.665-07:00As If Walking Wasn’t EnoughIn a few days it will be 90 days from the day I start walking from my house to Mass General Hospital. This walk has metamorphosed. <br /><br />When I first thought about how I could talk to people about brain tumors and the need for more funding and research, I had also just started to have strange seizure like events-I was advised by my doctors not to drive until they figured out what was going on with me. I had to walk everywhere I wanted to go. When I needed to go somewhere further than I could walk I had to wait, and be dependent on others until they could take me where I wanted to go. These circumstances gave me a lot of time to think about my life and what I wanted to do, what my future would be, what the meaning of all I had been through, and what I was going through now might be about. Was there a meaning? Could there be a meaning made out of this situation? The fact that I was doing so much walking gave birth to the idea of taking a walk, a long walk. This would be a walk I decided I wanted to take. I decided I would walk and tell people about my own personal story. I thought that by doing this it would shine a light on a subject that I knew didn’t have a lot of light, and that it perhaps could be inspirational to people going through the dark times I had known first handedly, and that I would be able to raise funds for a cause that was extremely personal to me. This walk would give me a sense of power in what was feeling like a power sapping event on my continuing illness road. I wanted a way to turn the bad into good. I wanted a way to look at what had been at times for me, very sad, or totally enervating. I wanted to turn my experience (as best as I was able to anyway), into one that was positive. I believe that most people are not all that aware of brain tumors unless they themselves have been personally affected by brain tumors. My feeling was that once people were made more aware, they of course would want to donate to the cause. Right?<br /><br />When I thought about where I would walk, I didn’t have to think long…well, that’s not entirely true, I wanted to walk from my house to Mass General Hospital because this would of course be emotionally significant to me, but it’s 250 miles (no short walk). In my mind, it would be a way of putting a powerful sense of positivity on the same trip I made every week for seven weeks when I went to Francis H. Burr Proton Center in Boston at that same Hospital. It’s not that the outcome of my treatment at that hospital wasn’t positive-it was. It was the fact that I had to go then, and was filled with anxiety about the effects and the outcome. I knew with every passing week that while I was battling the tumor in my skull, I would not have any idea what success was achieved for months. I knew this-I knew that I felt sicker every week, and that my hair was falling out. On this trip that I would be planning to take from my house to Boston, I would be the decider. I would leave knowing that the radiation had worked, that I was stronger, and that I was going because I chose to go. I could decide when and how, and not only that, I could talk to people and let them know that the outcome of patients with brain tumors could be positive, that we’re out here. I would tell people that there needs to be more research and funding, so there can be even more survivors out there. So that’s how the baby steps started stepping. <br /><br />I never imagined back two years ago when I thought of this idea, all of what I would have been through since that day. I’m driving now, which is good. I’m training to walk ten miles a day, which will when divided over the total mileage it takes to get to Boston, and a few down days for rest in between my “walking days” will take me a month. I’ll leave on October 1st, and I plan on arriving in Boston on November 1st. <br /><br />After I decided to do the walk, a friend of mine and I came up with what we thought was a fantastic idea, and that was to include schools in this walk. I would walk and stop at the various schools along the walking route, which we decided would be the Boston Post Road. The Boston Post Road according to Google Maps has the best walking route. It has the most sidewalks, and what looks like from the satellite to be the flattest terrain. I would talk to the kids at these schools about brain tumors, the fact that it’s the number two cause of deaths in kids under the age of 20. I would among other factoids, also mention that we all should wear headsets because there is more and more information that indicates the strong connection between brain tumors and cell phones. I would also stress that non-cancerous brain tumors can be as deadly and life altering as cancerous ones, and that in order to make more medical progress-there needs to be more research, and of course more funding. The kids would donate if they felt they could, if not they would just walk a mile with me along my walking route. If they couldn’t walk along the route for school security reasons, they would walk with me on their school property. These things would all be worked out with the schools. The mile walk on campus was meant more as a symbol of support for the cause. I would say goodbye after the walk and or talk, and walk on. Great, right? Well, what I’ve learned about certain schools and the bureaucracy of schools, of people, of neighborhoods, of fundraising, of healthcare, and of non-profits since starting Brain Matters and Walking Miles 4 Brain Matters has been formed, has been incredible. It’s a documentary in itself. I thought this walk would be about what I would be able to teach other people; little did I know how much I would be learning. Who could have imagined the maze? I have made progress; I just am quite surprised by the lack of “help”, by whom I thought would have been natural helpers. The school year has ended, and there is still the start of next year to accomplish things, but the amount of time it takes to do things, has proven to me mind-boggling. We have schools that are participating, some for the walk, others just for the talk, and then I’ll walk onward, I’m fine with this, because it still gets the word out, what it does effect is Brain Matters’ ability to raise the funds we were hoping to raise, not only to make the walk, but to film the walk…but the beat goes on. <br /><br />The biggest disappointment remains my home town school, but we’re still working on that, they can’t commit to getting the students involved; the school running track may be an issue because it’s new. If we can’t walk there, where can we walk? Who we need to talk to has been confusing, the amount of support has been limited. The funny thing, although not so funny, is that if asked the school, I’m sure they would say they’ve been very helpful, they’ve met with me, they will get their charity clubs involved at the beginning of the year, but they can’t effect the school calendar, the schools rules, the timing and the system. That’s true, it’s all the people that need to be talked to, to make something happen, that keeps the something that could be really good, from really happening. This isn’t Washington D.C afterall, this is Port Washington. The other thing is that Brain Matters is a new charity, we’re not the Cancer Society or ALS, and that doesn’t get us instantly into the VIP room. We’re the little engine that could, or trying to be. My experience has been that public schools have been more difficult to work with to arrange and create fundraisers; it has not been the same with private schools, not as many rules…it’s different. I’ve also learned a lot about people, both good and not so good. Some people say they’re going to do, and do. Some just say they’re going to do and don’t. It’s sad when you believe that people who say that they’re going to do and then they don’t, because I need to both believe from a position of hope (it’s what has gotten me through some of my hardest times), and also because I just need so badly what people say they’re going to do. It’s not easy needing things so badly. Whatever it is that someone says they’re going to help with (it could be as small as picking something up from a certain location that is needed for something), we need that help. A person may be offering money, maybe it’s time, or maybe it’s connections to other people with money and time. I’ve learned about funding, about myself, my energy (what I have, what I’ve lost due to health, and perhaps age), my tenacity (no, I haven’t learned as much there, I knew I had that). I suppose that I was naïve in thinking that because Brain Matters is a non-profit, and such a good cause, that people would naturally feel compelled to donate. It’s not the case. Say it ain’t so! I’m so appreciative to those that have either donated their time or money, some people have donated both their time and money, but then there are those that haven’t. Those people have really surprised, and for lack of a better word…disappointed me. I of course remain hopeful that they will support Brain Matters in the future. So on the days that I’m wiped out, wiped out because I’ve worked as many hours in a day as I’m capable of working, and I wonder if I’ll be able to raise enough funds to make this walk happen…I just think…I have to walk. I have to walk because this is so much more to me than a walk! I don’t know if I’ve explained it well enough. I hope so, but I don’t even know if it’s possible. Love to all of you that have gotten me this far. Please check out the interview on Patch.com about the Brain Matters walk http://portwashington.patch.com/articles/port-washington-brain-tumor-survivor-founds-brain-matters-awareness-foundationHeidihttp://www.blogger.com/profile/16471007237878095118noreply@blogger.com5tag:blogger.com,1999:blog-3225905841020314965.post-8923452257719532522011-06-09T15:03:00.000-07:002011-06-09T15:05:33.929-07:00The More Things Change, The More They Stay The SameYesterday I met someone that I hadn’t seen or talked to in over twenty years….that’s a lot of years. I’ve seen people before, that I hadn’t seen in an equally long period of time and they’d changed-that’s to be expected I think. The years from mid to late twenties through to mid to late forties are big-changing years for just regular reasons, then add to that the fact that as a world and a country we have been fraught with change…how can a person not be effected by all that has gone on? Some of the regular life changing events that I can think of off hand might be getting married, having children, buying a house, getting divorced, maybe our parents dying, these things might change a person, it might change our personalities a bit. We grow up…we’re not exactly the same…most of us. Many people that I knew twenty years ago, I still know today and we’ve gone threw changes, some more than others, but we’ve changed. At our core we may be the same, our sense of humor, maybe, maybe our politics, but we’re no longer in our twenties, nor would we want to be.<br /><br />The person I met yesterday was the same, same as he ever was; this was fascinating to me. He was still single, never married, no kids, was making a successful living. We only met for an hour, but to me he seemed totally focused on himself…as always, as though he was still in his mid-twenties. This was both depressing and comforting. The only thing that seemed different was that he was bald, and he had been heading that way back twenty years ago, so not even that was a huge change. I’ve seen so much of the changing side of life, this was the “staying the same” side of life. Thank you, I guess.Heidihttp://www.blogger.com/profile/16471007237878095118noreply@blogger.com3tag:blogger.com,1999:blog-3225905841020314965.post-16188083567648516722011-05-27T15:41:00.000-07:002011-05-27T15:47:17.901-07:00What was that you said?Just like so many things, it’s all in how you choose to look at it I guess. One of the side effects of my first surgery has been the loss of hearing in my left ear. This may not seem like much, because after all I still have hearing, and for this I’m extremely grateful. However, the difference between hearing in one ear and hearing in both ears is still a big difference, which you may not understand until you’ve lived it. For instance, when you’re driving and you hear an emergency vehicle, you’re never quite sure from which direction that vehicle is coming; you don’t know which side of the road to pull over to, or if you need to pull over at all-it could be possible that emergency vehicle you’re hearing isn’t even within what would be considered your zone of concern. Then there are the times when someone yells your name down the block, and the block is crowded and the person yelling is far away. You may look for a long time before you find that person-that is if you ever find them at all. I can remember a time, when my mother and I were both outside her house, but not near each other. She was in the front and I was in the back-she called my name, and I continued to do the same until we both walked in a complete circle around the house, not ever connecting with each other- neither one of us stopping while calling out to the other one. Finally after about five minutes, I decided to stand still and she ran into me. We’re both deaf in one ear and we weren’t able to tell from which direction the other one was calling. We may very well have done this for much longer than five minutes with no real idea or indication where either one of us was located if I hadn’t stopped moving. Just glad the situation wasn’t an emergency. I think she was calling me to come look at a flower that had bloomed. Another thing about being a singular h/earer is when I’m in an important meeting, and the location is in a conference room or maybe a restaurant-I have to think a lot about where I will sit within that group before I actually sit, and if all the sitters haven’t arrived yet, oh that’s a real tension heightner. I must also always assess to the best of my ability what noise or noisemakers I potentially could be sitting next to. I know there’s a good chance I won’t be able to hear everyone at the meeting, and I need to think about who will be talking the most, and even more importantly who do I <span style="font-weight:bold;">need</span> to hear the most. Again, these are just things. Then there is stereophonic sound. This is lost on me. A bit sad really. I haven’t heard stereophonic sound since maybe 1989 when I went to an Elton John concert. I’ve noticed people who’ve made a concerted effort to use only one of the earplugs on their cell phone headsets in order to still hear the outside world while they’re talking to someone on the phone. I suppose this is the same concept behind one-piece headsets. This kind of rigging doesn’t change a thing for me; I have the same complete concentration to whomever I’m speaking to, with total silence to the outside world without this rigging. I have this because I have only one working ear. But all these things considered it’s still much, much better to hear than not to hear. By the way, better to use a headset than not to use a headset for health reasons, whether you have the use of one ear or two. That being said, what I hear can sometimes be quite interesting, even funny...depending on how you look at it, and after 22 years of not hearing with both ears, that’s how I’ve decided to look at it. There are many things I’ve heard wrong, enough probably to fill lots of pages, but recently I thought I would write a few of them down. Here are a few of those things:<br /><br />Recently I was getting my hair cut by my friend Sasha. I’ve known Sasha since before I had my first surgery, since before Jamie was born, when I could still hear in both ears, so we’re talking over 22 years. Sasha was telling me a story. We had started talking somehow about how people are living longer lives than they ever have before, and she said she had read a story about a woman who was 92 years old and “could still pee”. I heard this and thought that while this didn’t seem like all that much of an accomplishment to me, and I that should I reach the grand old age of 92 I hoped I would be a natural in this department, perhaps there are plenty of 92 year olds out there that aren’t able to boast this same accomplishment. Maybe there are many 92 years olds who are wearing adult diapers and aren’t in control of their bodily functions at this age. So, I said to Sasha “Wow, 92 years old and can still pee?” She started to laugh hysterically and tried to talk, but her words were unintelligible. I wasn’t sure why she was laughing, since I was sure I was just reiterating what she had said to me…but she was convulsed with laughter and could not talk. When she was finally able to pull herself together, she came around to my hearing side and told me what I was unable to hear the first time around. She said, “No, Heidi, she’s 92 years old and she <span style="font-weight:bold;">competes</span>. She’s just completed a marathon”. I thought to myself, “Ah, now that’s an accomplishment!” It’s hard for those reading this I suppose to understand how “can pee” and “competes” could sound the same, but to those that can hear “sort of” those things sound quite similar, and not only that, they sound that way a lot of the time.<br /><br />On a different day I picked up my youngest daughter Rachel from school. We were in the car together. We got into one of our usual post-school conversations. She was telling me about her day, maybe she was complaining about somebody, some teacher, some class, something. I made a comment about one of her complaints. I wish I could remember the specificity of this individual situation, but I can’t. At the moment, on that particular day, when the particular conversation occurred, it held the heft of its particular importance…afterward (sometimes, shortly afterward) it seems to fade away. So looking back on the situation, I’m straining to remember the particulars, but for this story the particulars are not so crucial anyway. So Rachel tells me something and I comment. She comments back, “Oh you’re an old fart”. First, I’m quite surprised to hear Rachel use the word “fart”. I’m just surprised that Rachel knows the word “fart”. It’s not a word I recall her ever using, but perhaps it’s just entered her vocabulary. Could that be? Second “since when did Rachel start to use this saying?” Is this a part of some retro High School lingo? I answer back, “You may not like what I said to you, but why did you just call me an old fart?” She started to laugh, and of course as is usually the case in these wrong-hearing situations, I didn’t understand why she was laughing. It took her a few moments, and then after getting over hearing me say the word “fart”, which she found funny I suppose, she said “I didn’t say were an old fart, I said you’re no fun.” The most interesting thing to me about this mishearingness, is that while I’ve heard things that sounded more similar to each other, the sentiment of these two comments is very similar “you’re an old fart” and “you’re no fun”. I could have after all have misheard her say “you’re not smart”, or “do you carry a gun?”<br /><br />On a different day, I had gotten together with my friend Leslie at my local diner. We ate, we talked, the bill came, it was time to pay; we divided the bill…easier that way. She looked at me while holding a twenty-dollar bill and said, “Do you have gas?” We’ve been friends for almost twenty-five years, there’s almost nothing we wouldn’t feel free talking about together. We’ve gone through our pregnancies together, she was there after both my surgeries, we’ve been through a lot together, and so “if she wanted to know if I had gas”, I wasn’t all that put off by the question. I wondered why she cared if I had gas, but I wasn’t put off by her asking if I had it. It did make we wonder if she had gas. So, I said, “No, I don’t have gas, why do you care? Do you have gas?” She said, “No, not gas, I want to know if you have cash, all I have is this twenty-dollar bill. I want to know if you have any change, and I don’t have gas” So then of course we laughed at my usual lack of hearing, I gave her a couple of bucks. I was glad to hear she didn’t have gas. This is not the first funny non-hearing story between she and I-it won’t be the last.<br /><br />Then there was this story that happened only recently. It was this last event that compelled me to finally write about how I hear things differently than what is actually said. I thought as funny or embarrassing as some of these “non hearing moments” may be, they may never top this most recent one. I was walking my dog Max, a feat in itself. Max is strong…a puller. He has definite opinions about the people he likes, and doesn’t like, but he’s just a bit older than two, and he’s improving every day, but still…he’s Max. So we were out, and we passed this house up the block from our house on our way home and Max was looking for the dog that lives in this house. The dog that lives in this house is an old Jack Russell Terrier. For those that don’t know, a Jack Russell terrier in their prime can also be quite opinionated, and a force to be reckoned with-they’re small dogs, very bright, and don’t seem to care or know that they’re small. This particular Jack Russell is almost 16 years old. The owner and I have talked before about her dog and how he’s not what he used to be, and how she takes him outside to “pee” now (there’s that word again), and he just stands there, but he’s still hanging in there. So on this particular day when Max and I were passing the house, her dog was not out, but the owner was sitting in a chair outside. Max was sniffing around for the dog and I said to the owner “my dog is looking for your dog”, and she said with what sounded like a bit of a sad low tone to her voice, <span style="font-weight:bold;">“Oh, he just died”</span>. I was horrified to hear this; I had just seen her dog and he seemed like he was doing okay. He was by no means fit as a fiddle, but he was oozing down the road, if not easing down the road, and he seemed to be happy enough. I said to her with genuine sadness <span style="font-weight:bold;">“Oh, I’m so sorry to hear that!”</span> and she quickly said with more of an upbeat almost corrective tone, <span style="font-weight:bold;">“oh, no, no, he’s fine, he’s just inside”</span>. I of course felt embarrassed and immediately apologized and told her that, “I don’t hear very well, that I misunderstood what she had said, and that I was glad to know that he was still with us”. She said, “No, he’s still hanging in there”. As Max and I walked back home I was a mix between sadness, awkwardness and laughter about myself and how I hear. I felt sad for the owner of the Jack Russell Terrier. I hoped that I didn’t fill her with sorrowful thoughts about her aging friend. I also couldn’t help thinking a bit about the embarrassment of seeing her the next time we ran into each other on the street. This is the way of things when you have hearing in only one ear. But even considering all of these times I have heard things wrong, I always know that having hearing in one ear is still better than having no hearing at all. It’s all in how you choose to look at things.Heidihttp://www.blogger.com/profile/16471007237878095118noreply@blogger.com5tag:blogger.com,1999:blog-3225905841020314965.post-25858747087544565002011-05-06T14:18:00.000-07:002011-05-06T14:20:50.873-07:00What a difference a day makesOne day and 2.5 miles down the road from my school experience from yesterday, I sat down to talk about <span style="font-weight:bold;">Walking Miles 4 Brain Matters</span> with another school. This I’m happy to say was a whole different story from my initial meeting with the school the day before-the manner, the interest, the respect were all much more compassionate and upbeat. I can describe it only by saying that I was made to feel as though I was a person who was trying to bring awareness to an important cause, instead of a traveling salesman pushing the latest gizmo. <br /><br />After this positive reaction, I traveled back up the road to talk to someone else at the same school I had had my not so good experience at yesterday. This time I spoke to someone else-this person explained to me that while things were busy at the school, that it was a good thing that I was getting in touch with the school now because of how much planning things take. I did mention to my most “recent person”, that I had spoken to someone at the school that had suggested that I’d be best to contact the school at the beginning of September about my walk on October 1st. My “recent person” went on to say that there are many fundraising events at the school and that waiting until the beginning of September would probably be too long to wait. “Now we’re making sense”, I thought to myself. This person I met with was polite and took the time to listen to what I had to say about <span style="font-weight:bold;">Walking Miles 4 Brain Matters</span>. I told him the importance that this particular school had for me, I also explained to him that <a href="http://www.brain-matters.org">Brain Matters</a> was prepared to contribute whatever effort was necessary to help make this event come true. He said, “I will look into this further, please call me back in two weeks”. And so I will. <br /><br />I will call everyone back as I continue to call others for the first time, and visiting others. What have I learned? For schools it seems to be better if you can meet people in person, than on the phone. We’ve sent many, many emails out, and made many phone calls, but nothing has received quicker more immediate feedback than an in-person meeting. We have spent a lot of time trying to find the correct person to talk to; the person you’re talking to may no be the one making the final decision even though they may sound like it-it took a while to figure this out. The lesson continues and so does the road.Heidihttp://www.blogger.com/profile/16471007237878095118noreply@blogger.com5tag:blogger.com,1999:blog-3225905841020314965.post-48504531487975582042011-05-03T15:13:00.000-07:002011-05-03T15:27:21.870-07:00Come together, right now!This has been quite the couple of months. I’ve been building. I’ve been walking. I’ve been working with friends to create a website…to reach out to schools to hopefully get those schools and the students engaged in the cause and the walk…collaborating to design a logo and a business card and thinking about a slogan. I’ve been getting in touch with whomever I’m supposed to get in touch with to fill out the paperwork I’m supposed to fill out. I’m contacting the people, the corporations, the sponsors, the talent, anyone I can to raise awareness for a cause that needs awareness. I’ve had some amazing help through friends and family, and then there has been the other side that has also been equally educational but not as positive…I’ll call it the Darkside. The side that is strangely familiar. The side that reminds me of when after I had my second surgery and was told that my best option was a third surgery, maybe a fourth surgery, but there was no guarantee that any of these surgeries would cure or even help me, and that it was important that I know that with each surgery there was a risk I could actually be weaker and more impaired. I remember asking if there was anything else that may be out there in the world that might be useful or effective for me. Anything? My doctor said that he was sad to say it, but “No, there wasn’t”. This didn’t seem like an option. Moving on…from him seemed like the best option. “I’m not taking NO for an answer seemed like the only option”. I left that negative optionless room on that day that my surgeon and I had that very bubble-bursting conversation (at least that’s how I saw it), and started to research for another option…any other option other than the one I was being given. After much looking, and much help from many of the same people who are helping me put together the <span style="font-weight:bold;">Walking Miles 4 Brain Matters</span> event I’m planning now, we found what I felt was a better choice for me. This is when we found Proton Radiation Therapy. My most recent math problem is slightly different, but the arithmetic is the same. As I’m trying to help raise awareness of brain tumors, I’ve come up against one of the same problems I was dealing with at the time I was dealing with my own brain tumor. I recently was calling to get a school on-board for <span style="font-weight:bold;">Walking Miles 4 Brain Matters</span>. The call was to one of the first schools we’re planning to stop at in October. The person I spoke to at this one particular school gave me two reasons why they would not be able to commit to participating to our event. Reason number one in the room of “sorry we can’t help you now” was that it was too soon to think about an event that was in October, but that if I called back after the first week in September, just after school started (only three weeks from the day I was to begin walking) that maybe they could help me out at that time. This was not bubbling with enthusiasm nor helpfulness. It also didn’t make sense. I spent many years at school, my daughters went to school, are still in school, generally everything that is done at schools is done way in advance. The rest of this conversation was deflating for additional reasons which I won’t go into, but I suppose the most deflating was the unbelievable lack of support considering that <a href="http://www.brain-matters.org">Brain Matters</a> (our non-profit), is willing to do so much of the work, and really only needs the school onboard for promoting the walk within the school. We would supply attention-drawing flyers to the students, the website includes the permission slips and the registration forms, we would do the advertising on the outside etc. Reason number two in the world of “sorry, we can’t help you now”, was that as I was talking to this school official they told me they couldn’t help me because they were too busy promoting Relay for Life at the moment, and could not divert their attention or the student’s attention from that project, to get them involved in anything else. I am familiar with Relay for Life and believe it’s a great cause-it helps raise money for cancer and incorporates cancer survivors into that fundraising-this by all means is a cousin of <a href="http://www.brain-matters.org">Brain Matters</a>. I was not looking to get in the way of this cause. My own kids have participated in this cause in the past, and I was fairly sure that the event didn’t take place until the end of June. But time can fly by when you’re having fun, so I asked the person I was talking to when the event was supposed to take place. He told me it was happening at the end of June. He also told me the school had been doing the event for 15 years, which made me think that while I do know Relay for Life does take planning, so much of it at this point has been put into place because it has been going on for that length of time. I said, “today is April 26th (the day we were actually speaking to each other), that’s almost two months away from now, and you can’t talk to me because you feel too busy with regard to an event that is two months away, that makes me concerned about how much you will be able to do when we’re talking to each other again at the beginning of September with only three weeks until the beginning of my walking event. I realize my walk is in October, but all I’m looking for is to know that the school is onboard, and that we can work together to make this happen…waiting until the kids come back at the beginning of September to decide whether or not you will want to be involved, I believe will be too late to get the message out with only three weeks preparation before a decision is made.” I was surprised by this conversation for a few reasons, some obvious, some less than obvious. Before my friends and I thought of the idea of stopping at schools along the route between my hometown and the last town in Boston, we had put out a few “feelers” to schools about our idea. The schools we had spoken to thought the idea was terrific and were eager to help in any way they could. They thought that being able to reach out to kids and make them aware of brain tumors was great, and having a long walking event that stopped at schools would be a good way to bring publicity to the cause. It was because of this eagerness that <span style="font-weight:bold;">Walking Miles 4 Brain Matters</span> was created. We believed that their eagerness would be matched by other schools we contacted, and if not eagerness, then at least politeness and if not that, then good will. I find myself wondering if the reason for the difference in enthusiasm is because the schools we talked to before we “molded” the event were private schools, not public schools? I went to public schools my whole life, I participated in UNICEF, participated in other charitable fundraisers, why was this particular school, this particular public school so…for lack of a better word “non-participatory”? Well, when I hung up after that call I thought to myself, “I’m not taking NO for an answer”, not yet…there must be more options, more people to talk to”. It’s possible that if I had accepted the opinion of my doctor back a few years ago, I wouldn’t be here today. I wouldn’t be here complaining about what I don’t feel is not quite right. It may just be that not every school I call this year will be the right school…not for this year anyway. Many of the schools we have called have already shown a significantly different reception than this one school. This specific school I’ve been talking about happens to be particularly meaningful to me. If it doesn’t work out, then I will have to accept it, but certainly not without coming through the windows, if they’re closing the doors. We’ve got to come together right now. Don’t you think?Heidihttp://www.blogger.com/profile/16471007237878095118noreply@blogger.com3tag:blogger.com,1999:blog-3225905841020314965.post-51906113792712179662011-03-29T08:42:00.000-07:002011-03-29T08:45:02.786-07:00Friend of a FriendA couple of weeks ago I was sick with the flu, I should have gotten the vaccine, but in the past I’ve gotten the vaccine and actually ended up getting the flu anyway. I made an Executive Decision and decided not to have the vaccine this year…wrong decision. Next year I will get the vaccine…next year I’ll be one of the first people to get it. This flu took me down to the mat. First, Rachel got it-this is almost always the case; Rachel goes to High School and is a sponge for maladies, and then the worst part about this for the rest of the family is that she’s a donor-the gifter if you will, of maladies. A week later Rachel was much better…a week later Rachel’s illness had become mine; mine lasted for a month. What was first a flu-became a sinus infection. In the middle of that, Jon also was gifted the malady; he said he hadn’t remembered being that sick since Jr. High School. It was bad, and ironically it was Rachel’s Winter Recess. Jon had taken nine days off…not exactly the vacation we had imagined. At my peak of fluness, a friend of mine called and asked if I would talk to a friend of hers-she told me that her friend’s husband had recently been diagnosed with a glioblastoma. The relativity of life! Here I thought <span style="font-weight:bold;">I</span> was feeling horrible. This is a very difficult type of tumor to treat. I wasn’t sure what I would be able to say or do for my friend’s friend, I felt like crap, but I was sure she felt worse, and if it would make her feel better just being able to talk to someone who knew what it felt like to be a person, or to be with a person that had a brain tumor, of course I would listen and try and help. We talked. I don’t know if anything I said was useful. I was frustrated that I wasn’t able to do more. I was also frustrated because during these sick few weeks I had lost valuable Brain Matters time. Time I could/should be using to be able to set up my walk, and to meet with people I had been wanting to meet with…this conversation was just another indication of how much more needed to be done with regard to brain tumor awareness. No tumor patient is exactly like another one…but I lived close enough to this friend of friend’s neighborhood that I knew the neighborhood well enough, and all I could do was pay a visit. Why isn’t there more in the neighborhood?<br /><br />Then two weeks after that conversation I met with the Director of the Brain Tumor Foundation and I learned something very interesting…the Foundation is making a tremendous push for early detection. I think this is a fantastic idea! <br /><br />The earlier you find out if you have a tumor, the better the chances for curing that tumor. The smaller a brain tumor is, the easier it is to operate on, with all likelihood the less impactful it will become on very important nerves, the brain itself, etc. Overall, it will just be easier to treat. Without a doubt the people I’ve spoken to through this blog, or because of what I’m about to do, or have been through in my past were surprised to find out that they had a tumor…myself included. You usually don’t know you have a brain tumor until something major happens. One day you might have a seizure, or you don’t remember something very basic like your own name, or you start to hear ringing or buzzing in your ears, or you start seeing double. If you were to have an MRI as a part of regular check-up, the way we do mammograms, this would save lives. I know it would. Twenty years ago, when I was originally diagnosed, the ability, ease and technology to have these tests on a frequent basis did not exist, that is not the case today. <br />This is a step. <br />This is action. <br />To learn more go to www.braintumorfoundation.orgHeidihttp://www.blogger.com/profile/16471007237878095118noreply@blogger.com2tag:blogger.com,1999:blog-3225905841020314965.post-48656505729689249212011-02-16T09:49:00.000-08:002011-02-16T10:06:38.631-08:00On A Mission...<span style="font-weight:bold;">A Mission</span> is a responsibility, a duty, a commitment, a life’s work, an undertaking, a journey, an intention, a venture, a purpose, a calling, a pledge<br /><br /><span style="font-weight:bold;">A Mission Statement</span> is supposed to be an official statement of the aims and objectives of a business, but it’s so much more. <br /><br />I’ve written several mission statements for companies I’ve started, companies I’ve thought of starting, projects I’ve started, or thought of starting-it’s what I’ve had to do, it was a part of what was considered necessary-a part of the process, I never really thought about what a Mission Statement was, just what I needed it to be, what I needed it to accomplish-it needed to be a sales tool and that’s how it was written. It wasn’t until I was writing the Mission Statement for my Non-Profit Corporation, <span style="font-weight:bold;">Brain Matters</span> that I realized for the first time the real meaning of that word “mission”. There has never been a Mission Statement that I’ve written that’s been more important to me than the one that I’ve written for this company-it’s because this company is a "mission" for me. It feels like one of the most important things I’ve ever tried to do in my life. This is the <span style="font-weight:bold;">Brain Matters Mission Statement</span>…this is my mission, my commitment, my pledge.<br /><br /><span style="font-weight:bold;">Brain Matters</span> has been created to bring awareness to the public about brain tumors; this is a personal mission to me. I was diagnosed with a brain tumor 20 years ago; it turned out to be a cancerous. Since then I’ve had two brain surgeries, and two rounds of radiation. There are advances made in medicine every day. As a patient I have learned that one of the most important things may be that while you’re greatest wish is to be cured, it may be just as important to stay alive long to take advantage of the medical advances that happen in the future until you can be cured. There are many people that don’t get that chance. I was given that opportunity. <br /><br />As long as I’m physically able, I feel a responsibility to do what I can for those that aren’t as able as I am right now, and to try and do what I can for the cause. It’s for that reason that I intend to be <span style="font-weight:bold;">“Walking Miles 4 Brain Matters”</span>. I will walk 250 miles from my house in Port Washington, NY to Massachusetts General Hospital in Boston this October, taking basically the same route that my husband and I took every week when I went for proton radiation therapy at the Mass General Proton Center two years ago. I will walk through the neighborhoods and towns that I passed along the way, reaching out to the people in those towns. The kids at the schools along the route will walk with me and help raise funds and awareness for the <span style="font-weight:bold;">Brain Matters</span> cause. <span style="font-weight:bold;">Brain Matters</span> is dedicated to making the public aware of brain tumors-not just cancerous tumors, but non-cancerous tumors as well, which can be just as life threatening. We will create a documentary film of this entire walk. <br /><br />Part of the funds raised by <span style="font-weight:bold;">Brain Matters</span> will be donated to Massachusetts General Hospital’s Proton Center. The Proton Center is one of the few Proton Centers in the country; without the center I probably wouldn’t be able to make this walk, perhaps I wouldn't be here today, nor might many other people who have been treated at the Center. Proton Radiation is a very important part of brain tumor therapy. We also intend to donate funds towards medical research for brain tumors. My hope as a patient is that when a person is diagnosed with a brain tumor and their doctor needs to tell them their diagnosis, it doesn’t sound like this… “I’m very sorry to have to tell you this, but you have a brain tumor. Brain tumors are very difficult to treat and we wish we had more options available to you at this time, we will try and do the best we can of course”. This walk and documentary is just the beginning, it’s <span style="font-weight:bold;">Brain Matters</span> hope that the walk will become a yearly event, from which many other things will happen. <br /><br />As I said before, not many brain tumor patients get to live long enough to shine a light on a subject matter that is darker than it should be, and because I’m still here, I feel it’s important to do whatever I can do, to be one of those lights. To me it couldn’t be more personal.Heidihttp://www.blogger.com/profile/16471007237878095118noreply@blogger.com1tag:blogger.com,1999:blog-3225905841020314965.post-64641334783106779572011-01-25T15:08:00.000-08:002011-01-25T18:45:17.269-08:00May They Always Come BackOh those rings! I’ve talked about my rings before. I have an engagement ring and a wedding band sitting on the finger these rings are supposed to be sitting on…that is they were sitting there last week, they occasionally leave and decide to sit elsewhere. For instance, in the past I had been concerned that because I was doing somewhat strenuous activities (like twenty years ago), that I might lose my rings, so I put them in a safe little box. I didn’t know that the safe little box would be in an unsafe apartment that would be the victim of a steam pipe explosion. After that explosion, I thought those rings were lost or maybe stolen-I couldn’t find them anywhere; Jon bought me new rings. Five years later when I was clearing out an old box from our old apartment (we didn’t have that much left from that apartment-most everything was contaminated with asbestos, or destroyed, or stolen), I went through this box, and there they were…the other rings…waiting to be found…just resting. Someone (not me), one of the workers that had been hired to clean the building, must have put the little box into this bigger box, not knowing what was inside the safe little box, or maybe they did, and decided to leave them there to rest.<br /><br />Then a different time, when I was about 8 months pregnant with Rachel, I took off my rings (the newer ones), because my fingers were swollen, and put them in a jewelry box in my closet. I didn’t think much about it. A couple weeks later I looked for the rings but I couldn’t find them. I didn’t think much about it, there was so much going on at the time. Not only was I pregnant-but we were raising the roof on our house and building another floor. The construction was behind schedule-instead of the building being completed by the time Rachel was born, we were just starting to build right before Rachel was born. We were also dealing with the process of hiring a babysitter or nanny because I was only taking off 6 weeks before I went back to work. Jamie was 7 years old at the time, Jon wasn’t loving his job…so maybe, just maybe I hadn’t put those rings in the jewelry box-it was possible. I thought about it, but I wasn’t obsessing over it. Then I got a call from the local Coach store thanking me for my purchases for $500-only problem was I hadn’t made any purchases there. The next day I received a call from my credit card company informing me that I had made $8000 worth of purchases…wrong. Hmmmmmm…. I decided to take a ride to the Coach Store with a picture of my babysitter (she was the only other person besides myself that would have had access to my closet). When I got to the store I asked to see the woman who had called me. She came out from the back of the store, and of course she did not recognize me, but interestingly she recognized my daughter Jamie who had come along on this bit of Secret Agent business with me; she apparently had been with our babysitter on the day the Coach purchase in question had been made. Jamie wasn’t supposed to be driven anywhere without prior permission-guess our babysitter forgot. I showed her the picture of our babysitter, and she confirmed that the picture was definitely the “thankee” that she meant to be calling on the phone the day before my visit. I decided to go to the police the following day. The police couldn’t do anything about the Coach purchase because it was a credit card exchange and that was out of their jurisdiction. But what about those rings? I wasn’t sure if our babysitter might have gone into my jewelry box in her spare time-but it seemed considering the recent information, that it was possible. The police went to her house-she let them inside; they told me afterward that she had piles of bags and boxes-probably from all her shopping sprees. They asked her to accompany them to the Police Station; she answered some questions and was kind enough to produce a pawn slip for my missing rings. What do you know? The rings were missing! They were stolen! So the rings went on another trip and back they came. They could have been sold, but they weren’t. Our babysitter could have chosen to not produce that pawn slip, but she did.<br /><br />So…last week, I noticed that my increasingly thinner fingers were not holding onto my rings the way I’d like them to, and I wondered if I should have them resized…that day was Wednesday. As I wondered this, I thought it will be easier to decrease the rings, than to increase them, and that while the band for my engagement ring is simple, my wedding band would require a bit of artistry should I need to increase its size after decreasing its size, and would it really be worth it to go through all that, when my fingers might very well expand in the near future. Much thinking was given to this matter. I specifically choose to wear the wedding band on top of the engagement ring because it’s smaller and that way it acts as a stop gap if you will, for the engagement ring, also thinking strictly monetarily, the engagement ring is more expensive than the wedding ring, and all and all, while I’d be sad…very sad if I were to lose them, I’d be much sadder if I were to lose the engagement ring.<br /><br />Then Thursday came…that’s Laundry Day. It was about five in the afternoon, and I was in the Laundry Room (this is quite a good size room, as rooms go), I casually tossed a pair of jeans from the laundry basket into our front-loading washing machine, and there it went…I could feel the rings moving easily and quickly past my ring finger knuckle. The jeans went into the washer, I looked down at my hand, and I saw the engagement ring teeter-tottering at the tip of my ring finger, and the wedding band was gone. I didn’t hear a sound, I had no idea what direction it may have gone; it didn’t even occur to me that it might have gone into the washer. I was most concerned about a very large drainpipe that sits directly in front of the washer, that’s about four inches wide and infinitely deep. I finished loading what I needed to load, now and then scanning around to see what I could see…seeing nothing. Not Good. I didn’t turn on the washer because I wasn’t sure how this would effect the drainpipe-if water would rise in it, and potentially sweep my wedding band down and or out. I stood for about five minutes in the room, trying to pick up on the energy or the “signs”, as I sometimes do in these situations, and I had a tremendous pull to look directly under the washing machine. I didn’t have a pull to look anywhere else, so I went with that calling. I should mention that the edge of the washer sits about four inches from the deep drain to nowhere. I got down on my knees and looked under the washer…not so slightly under, past lots of lint, fuzz…lots of things, I caught a glimpse of something about five inches back from the edge, that could have been a button, maybe an old toy; it was hard to tell. I reached in, barely able to touch it, and it was my wedding ring. So there it goes again…always coming back. I was very glad to have been reconnected with my friend.<br /><br />After I put the rings in a place for safe-keeping (I hope), and think about what I should do about wearing them…should I eat more, decrease the size, or hang them from a chain around my neck? I quickly got on the phone and called my Mom and five friends-all people who know the history of my rings. I wanted to find out what meaning they thought this recent ring event had if any…wondering if they thought it meant anything else other than I needed to eat more because my fingers were becoming too thin. The responses were all very “ringlike”. I share these thoughts…to me they represent the magic of the rings and of life. The responses were, “you’re lucky in unlucky situations”, “Jon will always be there for you”, “those rings are meant to always come back to you”, “those rings belong to you”, and lastly from my good friend Cindy, “I think this is a sign, that just like all the other times when your rings left and came back, it’s the sign of a new beginning”. Oh those rings!Heidihttp://www.blogger.com/profile/16471007237878095118noreply@blogger.com1tag:blogger.com,1999:blog-3225905841020314965.post-79761508981190943762010-12-31T18:53:00.000-08:002011-01-18T10:48:42.382-08:002010I may have mentioned this before…in our family we have somewhat of a ritual, every New Year’s Eve we all write on small pieces of paper the things that we felt were great about the year and put them in a small “memory” box with the year written on them so we can look back on those pieces of paper in the following years. We also write on small pieces of paper for that same year what things were bad, and then we put those memories in the fireplace and watch them burn. There’s something quite cathartic about seeing the bad things burn away, giving a fresh start to the new year, with nothing but the good memories left behind; of course this is symbolic, we still have our minds to deal with, but generally it’s a very purifying experience.<br /><br />The year 2010 has been a difficult year for me and my family, and this year we’ve all said that while we’ve had a few things that we were glad that we had the chance to be able to see and do, and of course we would all like to write down those few things and put them in the box, what we all felt like we wanted to write down about the bad things instead of writing the individual things which seemed too many to write was to just write down <span style="font-weight:bold;">2010</span> and throw it in the fire. We’re still deciding what we will do, and what will make us feel best. Here are some of the things:<br /><br /><span style="font-weight:bold;">In the box:</span><br />We really enjoyed going to Maine this summer, seeing Jamie in Rumors this winter, Rachel is very happy that after many years of wishing she finally got an Apple computer for her birthday. I met some amazing people this year that are helping me make my Non-Profit Brain Matters and the walk I intend to make in October go from a dream to a reality. Jon and I happily spent a beautiful time celebrating our 25th Anniversary at Bedford Post Inn. Jamie interned at Telsey Casting this summer, which she loved so much she wished she could just camp out there overnight. We’re always thankful for our pets, and this year we’re glad for having met Jamey Garfinkle at Pet Sitters, who walks Max four days a week. Jamie has been such a help to me, and a great friend to Max. Lastly, we’re glad that we’re here to see the possibility that 2011 is a better year.<br /><br /><br /><br /><span style="font-weight:bold;">In the fire:</span><br />We were supposed to move in December 2009 when the seller of the house that we’re now living in came to visit us at the house we were living in at the time, uninvited two weeks before we were suppose to move into his house and said he didn’t want to move anymore. What? We learned a lot about NY Real Estate law this year. We moved, but not when we had planned, but the people who bought our house still moved into our house, fortunately they rented it to us for a month after they bought it (while they lived elsewhere), then we moved at the end of that month. All our stuff went into storage, we moved in with my parents, including all our pets…just like the old days when I was in High School…NOT. Shortly afterward one of our cars was in a car accident, only we weren’t in it (that was good, I guess), it was hit while parked. Our other car stopped working because it needed a new transmission (bad timing). While the cars were being repaired, I went to LA for a few days, and Jon and Rachel went to Florida. I missed my first flight, and flew out the next day. I started to feel my whole body buzzing-the warning of what would turn out to be seizures that I was to be diagnosed with due to a combination of post-radiation and stress. When I was leaving LA, my return flight was 4 hours delayed. When I returned, it was one thing after another, our dogs were crazy living at my parents, it snowed every other day, we continued to battle it out every day with our “sellers”. At the end of the month I was in the hospital. We closed on the house the beginning of February, but I was unable to go to closing. Our stuff left storage and we moved into the new house without my being there…it took me months after we moved in to find things. Rachel helped tell the movers where things should go once they reached the house. Jamie came home from school to help Jon get things from my parents to the house. I was still trying to figure out my medicine and my seizures. After all this, we dealt with kitchen renovation, painting, I didn’t drive for months, one of our birds died in June, Jamie had stuff, Rachel had stuff, Jon and I had stuff, our dogs had stuff. How could we not have stuff? Goodbye 2010. Here’s to hoping 2011 will be better year, and no worse a year. <span style="font-weight:bold;">Happy New Year!<br /></span>Heidihttp://www.blogger.com/profile/16471007237878095118noreply@blogger.com3tag:blogger.com,1999:blog-3225905841020314965.post-12885957484489807322010-12-31T05:52:00.000-08:002010-12-31T06:07:20.453-08:00It's Days Like This<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjeQ49gQT_eTqUh1Upp-jrDPu2i4B56whE_nZmxmhKgGZA8hkcw3ZOjkDVG-ulK8GGBwkStXN-yBBlo564n6RVp9joFZfKlya17FioftLxWX2fudrl-09rWGMu2D4xl2un42oWCPSD6L0c/s1600/Jamiedressin%2527up4"><img style="cursor:pointer; cursor:hand;width: 138px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjeQ49gQT_eTqUh1Upp-jrDPu2i4B56whE_nZmxmhKgGZA8hkcw3ZOjkDVG-ulK8GGBwkStXN-yBBlo564n6RVp9joFZfKlya17FioftLxWX2fudrl-09rWGMu2D4xl2un42oWCPSD6L0c/s320/Jamiedressin%2527up4" border="0" alt=""id="BLOGGER_PHOTO_ID_5556845852470367010" /></a><br />There’s this way of assuming things, taking things for granted, that once you’ve learned that you can’t…you don’t…you won’t, not ever. This not ever taking things for granted is as they say “both a blessing and a curse”, it allows you to appreciate things in a way that you may never have been able to before, but you also are anxious and worried that you may not live long enough to see and do the things you want to be seeing and doing. So it’s with that in mind that I tell my next story…event really. It goes like this:<br /><br />Jamie (my oldest daughter), who is now in her senior year at the University at Buffalo was recently cast as one of the leads in Neil Simon’s farce “Rumors”. First, it’s hard to believe Jamie <span style="font-weight:bold;">is</span> a senior in college. She just started college when I called her to let her know that I was going to have to have another brain surgery. My first brain surgery was when Jamie was a bit over a year old-she doesn’t remember much, if anything at all about that surgery. Anyway, back to our regularly scheduled story. <br /><br />The three and half years since Jamie started college have flown by in one way, and crept by in another. So much has happened in these years, and yet there have been times we have all wished for certain of those events to move by faster than others. The family has moved, we’ve had pets that have died, more doctors appointments than we can count…these things some how have gone by slowly, but Jamie’s time in college…to us anyway, has gone by quickly.<br /><br />Jamie has always loved the stage; she loves everything about it. Before she was performing on a stage, she was performing at home. When she was got a bit older, she went to USDAN, a summer theater camp where she met and still stays in contact with other theater loving kids-who have and will go on to pursue careers in theater. I don’t think I can remember happier times for Jamie than the ones when she’s been onstage. Among other roles, she was an excellent Peter Pan at her Junior High School-in fact they still talk about it at that school, and it’s been probably eight years since she’s played that role. This year she was cast as Chris Gorman in “Rumors”. Jon and I booked our flights, our hotel room, Max’s Pet Motel stay. We were in snowy Buffalo a total of 24 hours. Jamie said something, that rang poignantly to me; she said that was probably going to pursue a career in the world of theater, but her intent was not to pursue a career as an actor (that wasn’t what rang poignantly). She said, “you know, I was thinking…this may be my last time on stage!” My feeling is that if she loves it, she will find a way to do it. What’s the saying? Where there’s a will, there’s a way? Even if she doesn’t do it professionally, she can do it locally, or regionally…who knows…passion is an extraordinary thing. I know this first handedly. But still it did leave me with a funny feeling; it felt like sort of an ending, which I guess is somewhat of the same feeling she was feeling in herself. All the more reason I was glad to have been able to make the trip.<br /><br />The organizing and traveling for this “blink of an eye experience” was so totally worth it. Jamie was magnificent. She looked terrific, she was funny, captivating, of course I missed the fact that she didn’t sing, because I love when she sings, but I was so glad to be able to be there. As I was watching her on stage all I could think was that over these last few recent years I wasn’t sure where I was going to be, or how I was going to be…but here I was…watching her. I will remember this always. I love you Jamie-you’re terrific, and will be terrific at whatever you choose to do.Heidihttp://www.blogger.com/profile/16471007237878095118noreply@blogger.com1tag:blogger.com,1999:blog-3225905841020314965.post-55517072629227286002010-11-30T15:15:00.000-08:002010-11-30T17:06:45.641-08:00Just call me "A Regular"Rachel and I have had a routine for the last year or so where we go to our nearby walkable diner to eat Sunday brunch. Brunch has become lunch, because it was really crowded at Brunch time, and then Lunch became 2:30/3P because that was when it was not crowded. So this is the routine now, we go every Sunday at 2:30/3P after I walk Max at 1:30/2P, the usual Max walking time, and Rachel walks Chloe (our older dog) at around that same time, and then off we go. The place is ours. <br /><br />We have the usual!<br /><br />It took a long time to establish the usual. When we first started going, the waiter would ask us what we wanted. I would gesture to Rachel in a sort of showman, you go first way, and say “why don’t you go first”. Rachel on cue would say, “I’ll have the hash and eggs sunny side up please, with French Fries, not the home fries, and rye toast, and a unsweetened ice tea. Thank you”. Then it was my turn. I would say “And I’ll also have the eggs, only instead I’ll have mine over easy with the hash and the home fries, and if you could make it only one egg instead of two please, no toast, and I’ll also have a unsweetened ice tea. Thank you”. Seems easy enough, you would think, right? It would come, and it would be a delicious, while of course a cholesterol laden eating fest, it’s tasty. Then the bill would arrive, and I would be charged for two orders of eggs and hash. Not one order of Eggs and Hash, and one order with one egg. This is where the diner entertainment starts.<br /><br />I could not let this one egg thing go. I did not have two eggs. How much could one egg be? But why should the customer be charged for two eggs if they are only eating one? The egg I wasn’t eating, someone else was eating, only I was being charged for it, this seemed like a built in bonus…to the diner, not to me, not to the waiter, not to the cook, but to the owner. <br /><br />Next step. I would mention the over-charge to the waiter, and they would tell me that there was no difference in the charge between a one-egg order and a two-egg order, but I was welcome to take it up with the owner. Perhaps, many customers would prefer not to take it up with the owner, perhaps the owner was counting on the fact that most customers would not be taking this up with him. Perhaps the owner thought that most people like two eggs instead of one, or didn’t mind wasting an egg. Perhaps the owner thought that most customers didn’t mind paying an extra amount for an egg they didn’t eat. Well, that could be. How much extra was I paying? There was no one-egg option on the menu.<br /><br />I decided to go to the register to discuss the overcharge with the owner. I say to him “there seems to be a problem with my bill, I’ve ordered one egg, and I’ve been billed for two”. He said, “Oh sorry” and he deducts 75 cents. This may not seem like a lot to some, but to me, this was worth asking for, because once tax is added, we’re talking 81 cents for that egg. I don’t need to pay 81 cents for an egg I’m not eating. <br /><br />Next week we go again, the same routine, the same meal, the same charge, the same conversation, and the same deduction. This goes on for about two months, and it begins to wear on both of us…it’s not as fun or as easy as it was back two months previous. But I continue to go up to the counter, and I’m not wearing out, maybe they were counting on the fact that I would, maybe they were thinking I wouldn’t be coming on a weekly basis, or maybe they didn’t think we would be eating the same thing.<br /><br />Finally the bubble bursts…was it the meal, the bill, or the talk? The owner tells me that they really don’t have a one-egg meal and that they can’t continue to make this adjustment. I respond by saying that I can’t be the only one that wishes that there was a one-egg choice on the menu, and that perhaps they should offer it. He volleys the proverbial menu point over the net, and responds by telling me that they just had the menus redone and that they’re not planning on redoing them again for a while. This I acknowledge, because I noticed that my usual Final Bill had gone up about 5%, which is probably why we’re even having this conversation. Perhaps the cost of my egg is more, perhaps they can’t take 81 cents off the bill, it’s not as cost-efficient, or perhaps they are concerned that now that the bill is higher, I may (because I’m just that kind of a customer), be asking for more money off the bill for the egg. <br /><br />This conversation is becoming tiresome. I like the restaurant, I’m sure he likes the business. I get to the crux of the matter. I say “Sir, I like it here, I just don’t want to pay for what I don’t eat, suppose I eat one egg here, and take one egg home with me? Suppose I eat one eat over easy, and take a hard-boiled egg to go?” He says, “I can do that, no problem, good plan!”<br /><br />The following week Rachel and I dine, we order with the new plan. The waiter is confused, and says, I’m not sure we can do that. I say “the owner said it wouldn’t be a problem”. He says “hold on, let me check.” He comes back in a minute and tells us he can do it. It took many weeks, and many waiters, many times we heard “let me check”, and Rachel and I would laugh. We finally got everyone trained. We would order our meals, and the waiter would bring my hard boiled egg, in a paper cup with a plastic cover in a small white paper bag before the end of the meal and I would bring it home and eat it somewhere within the next day or so. It’s a good plan-it works for both sides.<br /><span style="font-weight:bold;"><br />Epilogue</span><br /><br />So about two weeks ago, Rachel and I got to the diner around 2:30P/3P our usual time. I saw one of our usual waiters, and on that day I was contemplating saying “I’ll have the usual”. I don’t know why, but I even kidded with Rachel that that’s what I was going to say. She kind of rolled her eyes “like oh Mom, don’t do that, that’s going to be embarrassing…it’s one thing to embarrass yourself, but do you have to embarrass me?” So the waiter comes to the table and says “And what will you be having today?” And following those words…from behind his back with the finesse of a magician he materializes a small white paper bag, which is holding the usual paper cup with the usual hard-boiled egg. Can you believe it? Rachel couldn’t believe it. I said to him, you’re timing is amazing, I was just going to say, “I’ll have the usual”. We laughed, I gave him the high five, he wrote down on his pad the rest of what I wanted, and what he knew Rachel would want. I said to Rachel after he left to get the kitchen preparing our Sunday 3P lunch, this is what it’s like “to be a regular-we’ve sure come a long way in a year”. We gave our waiter a very good tip for being such a great magician. It only goes to show you what you can do if you stick to it.Heidihttp://www.blogger.com/profile/16471007237878095118noreply@blogger.com0tag:blogger.com,1999:blog-3225905841020314965.post-41998710345377335532010-11-28T14:46:00.000-08:002010-11-28T17:42:01.829-08:0025 YearsI haven’t written in a few weeks, so many things…so little time in which to do them. I’ve been preparing for the walk for Brain Matters-this means many phone calls, paperwork, meetings, and exercising-all great, but definitely time consuming. Thank you BTW to all of you who have been working with me; I couldn’t be doing it without you. I can’t help thinking how it certainly beats last year when I was deep in the middle of moving from one house to another…so glad I’m not doing that this year. Also, on November 16th, Jon and I celebrated our 25th Wedding Anniversary, in some ways this went by quickly. What am I nuts? No way did this go by quickly. In some ways 25 years feels like many more years than that-not sure how many more…but more. I was going through some old files a few days ago, and came across something I had written a couple years back. I had written it because so much has happened over the years, that I didn’t want to forget it, I also think of one day writing a book about my experiences and want to make sure I’m able to have these things written down so I don’t forget them. Given this last year and my most recent medical problem and how it effected my memory, I’m glad that I did that. I thought it would be interesting considering the 25th Anniversary Triumph, that I would share a few of the other events that have happened to Jon and I in the last 25 years besides of course the ones that I’ve written about here on the blog, and the birth of our two fantastic kids. It hasn’t been easy to be married this 25 years, some amazing times, some not so amazing, some times I know we both could have done without for obvious reasons, some for not as obvious reasons, but we’re still standing, and we’re still here. I offer these quotes in celebration:<br /><br /><span style="font-weight:bold;">"The secret of a happy marriage remains a secret" <br />-Henny Youngman</span><br /><br /><span style="font-weight:bold;">"A successful marriage requires falling in love many times, always with the same person."<br />-Mignon McLaughlin</span><br /><span style="font-weight:bold;"><br />"A wedding anniversary is the celebration of love, trust, partnership, tolerance and tenacity. The order varies for any given year."<br />-Paul Sweeney</span><br /><br />And now for some of those other events that have taken place in the last 25 years. You could probably make this stuff up, but knowing that I didn’t is what makes it all that more unbelievable. Does that make sense?<br /><br />After our apartment was demolished in 1989 because of the steam-pipe explosion, a crew of workers came into the apartment to clean up the asbestos that littered it. We could not stay in the apartment for 6 months during this cleaning. These workers subsequently stole most of what we were forced to leave. My wedding and engagement ring were left in the apartment (in those days I didn’t wear them when I worked and the apartment was closed off without warning). Six months later after the asbestos clean up was finished and we could re-enter our apartment, we couldn’t find the rings anywhere, we assumed like so many other things, that they too had been stolen. Five years later I was unpacking some things and found a box I hadn’t seen before…my rings were inside. Some honest person must have hidden them there for safekeeping. Amazing!<br /><br />When I was about 8 months pregnant with Rachel; my credit card company called to tell me that there had been $8000 worth of charges on my card. Did I make them? No! Two weeks later a woman from a local Coach store called to thank me for my $500 purchase. Only one problem, I didn’t make the purchase. Suspecting it may have been our babysitter who made the purchase (not many people had access to my things), I brought a picture of her to the store. Busted! We filed a police report. The police arrested her. At this same time I realized that my wedding ring and engagement ring (the ones that I found in the previous paragraph) were missing; my fingers were swollen and the rings didn’t fit, so I kept them in a drawer. When I couldn’t find them I assumed I had misplaced them. I mentioned it to the police. When they asked our babysitter about the rings, she admitted she had pawned them. The shop still had the rings, and I got them back…again. Magical rings!<br /><br />When Rachel was 5 and Jamie was 12, our live-in babysitter for five years, named Judith, but Rachel called her Judah, started to feel sick. Two weeks later and still feeling ill, she went to the hospital Emergency Room. She was diagnosed with 4th Stage stomach cancer and died four weeks later. Afterward we discovered a diary that showed that she had paid thousands of dollars of her salary over the preceding year to a woman in Las Vegas who claimed to have a “special” relationship with God and could free her of her ills. I really wish she had said something to us sooner.<br /><br />A babysitter that Jon and I hired before we hired Judah, worked for us for a month, asked to borrow on her future salary and then afterward said she had a tragedy at home in Barbados; she needed to leave, but she would be back in a month. A month later she hadn’t yet returned, but said she still intended to do so. Around that same time we received a phone bill with $800 worth of charges to 1-800-Psychic. We wondered what sort of psychic advice she was getting before she left us? She never returned. We’ll never not have a 1-800 block on our phone line. Later I found out that this kind of storytelling is not so rare.<br /><br />And that’s just some of the stories in 25 years…so many more. That’s Life. Here’s to Living!Heidihttp://www.blogger.com/profile/16471007237878095118noreply@blogger.com0tag:blogger.com,1999:blog-3225905841020314965.post-85892876759349303052010-11-01T08:03:00.000-07:002010-11-01T08:05:48.767-07:00Don’t Put Off To Tomorrow, What You Can Do Today!I almost can’t help myself, I’ve been living this way for so long; funny thing is that until only recently I thought everyone lived this way. I was talking to a friend of mine about all the things I’ve been doing…this is a long list of things, partially because of habit (I’ve always been a person who feels best when I’m doing a lot of things), and partially because I’m a person who has NOT always been able to do the things I want to do when I want to do them…not everyone gets to know that experience. I admit it’s overwhelming at times, even brings me to tears, because I don’t know at what point I may not have the energy I need to do what I want to do, and that can be exhausting. It’s not that I don’t think if I were to put things off until tomorrow I wouldn’t be here to do them, it’s just that I do know that it’s certainly a possibility.<br /><br />My friend said to me, as any friend would say to their friend in tears “why don’t you relax, take it easy, you can do it later, tomorrow, the next day?” This is something that someone like myself doesn’t ever really think of because my rest(s) have come when I’m not the one choosing them-to me they seem to come when my doctors have chosen them- they have come out of necessity. I feel this want-this need even, to take supreme advantage of the time that I CAN be a doer, even if it can sometimes be a bit of struggle to do what I can physically do-because I know all too well what it feels like not to be able to do what you’d like to do when you’d like to do it. This knowledge is…what do they say “both a blessing and a curse”. However, it’s my feeling that this bit of knowledge isn’t such a bad thing for everyone to keep in mind.<br /><br />So as you’re thinking of that, think of some of these things, think about the people you haven’t reached out to, that you want to-but haven’t, the art class you may want to take, but don’t think you have time to take, the old storage container that needs to be cleared out because you’re sure that the something you’ve needed or wanted to have is inside it, but you haven’t had the time to look in it…for 3 years, the promises you’ve made, but haven’t kept, the calls you need to make. The cavity you need to fill before it becomes a root canal, the doctor’s appointment you’ve been meaning to make. Think about who you’ve been meaning to thank. Who do you want to say I love you to? There are always going to be things that I don’t get to, but I try. I have a list…and of course there are priorities, there are only so many hours in a day, I know that, but I remember the things I can’t get to because I write them down on the list. If you have to put off to tomorrow, what you can’t do today…write it down on your list so you can remember those things tomorrow. Today is a good day to start.Heidihttp://www.blogger.com/profile/16471007237878095118noreply@blogger.com0tag:blogger.com,1999:blog-3225905841020314965.post-16007936361288181292010-10-11T15:11:00.000-07:002010-10-18T10:51:38.071-07:00I'm Walking, Yes Indeed I'm WalkingSo next October 1st, it’s my hope should all things go right (this is no small task), that it’ll be the first day I will be on the road to Boston. My plan is to walk 10 miles a day, the trip is about 300 miles long…it’s shorter if I’m driving, the trip is longer because I’ll be going through individual neighborhoods. When I drove the trip every week in 2008 for radiation treatment, it was about 218 miles-but that trip was very direct. It’s my hope that by taking the long way, and going through neighborhoods I’ll be able to be more visible and in touch with people and communities, giving me the greater ability to make them aware of <span style="font-weight:bold;">Brain Matters</span>…again we’re talking hopes…<br /><br />It’s funny to think that on the first day I will walk 10 miles, and at the end of that day I will only be 10 miles away from my house-I’ll probably just take a car back and come home…may even do this the first few days, until it just doesn’t make sense to do so…but I’m just thinking out loud, everything is still so much in the planning stage…the hoping stage.<br /><br />As of today, it’s October 11th, I’m walking 4 miles a day a few times a week…I’m in the building stage, this is the most amount of exercise I’ve had in a while. When I’m walking, I’m imagining myself a year from now, what it will be like; I’m also dreaming about all that I want to make happen between now and then. As of now, I walk when it’s raining, because I know I will have to walk when it’s raining. I walk when it’s cold because I know I will have to walk when it’s cold. When I’m walking, I notice the changing of the leaves and I think, “that will look so good on film” (because a group of my friends and I plan on filming this all for a documentary), and it will be so beautiful to see this all as I walk from here to New England. I think to myself should everything go according to plan I will arrive in Boston just around Halloween next year, but I’m purposely choosing not to arrive on that day because that could be a crazy day to arrive; I’m choosing instead to arrive a day or even a couple days later, as long as it’s before the clocks get moved forward on November 6th, and as long as it’s on a weekday.<br /><br />I’m walking, I’m dreaming, I’m imagining, I’m hoping…yes indeed I’m walking.Heidihttp://www.blogger.com/profile/16471007237878095118noreply@blogger.com0tag:blogger.com,1999:blog-3225905841020314965.post-56657829271542406592010-09-14T08:40:00.000-07:002010-09-14T08:46:10.044-07:00It’s Not Called Dun-Rite Cleaners for NothingSo yesterday I was passing through the neighborhood I used to live in about seven years ago…it’s not far from where I live now...about fifteen minutes away-I was on my way to some other place, but I had a few things with me that needed to be dropped off at a Cleaners. One usually stays totally local with these things, but that’s more habit than anything else; I don’t love the Cleaners I go to now, I just use it because it’s within a couple of blocks of where I live. So back to my story…I saw the Cleaners I used to go to when I lived here…seemed like a “no brainer” (no pun intended), I would just drop my things here. I parked the car, went inside, and was greeted by the same woman who had always been there, and she said, “How have you been? I haven’t seen you in a long time.” I said, “You have a terrific memory! I moved, I haven’t been to this Cleaners in about seven years, but I was driving through the neighborhood and decided to drop these things off”. She asked how my daughters were, and I told her one was 21 and the other 14…she couldn’t believe it. She let me know my things would be ready on Thursday. She then told me what made me think that not only had Dun-Rite Cleaners named themselves appropriately for their expertise in dry cleaning, but in how they handle their customers as well…she said “It was great to see you, you look the same!” I like this place, made me wonder about what other things I might have at home that need dry cleaning.Heidihttp://www.blogger.com/profile/16471007237878095118noreply@blogger.com0tag:blogger.com,1999:blog-3225905841020314965.post-34538698016242252562010-09-13T08:33:00.000-07:002010-11-28T17:32:11.585-08:00A Day We'll Always RememberThese days I almost never watch TV, don’t know why…not enough time, not much I want to see, my eyesight makes it so that it’s harder to see…but for some strange reason on this Saturday morning (forgetting that it was September 11th), I turned on the TV at 9A, only to see that it was the beginning of the September 11th Memorial…the reading of all those names, I turned on the TV just before they rang the bell to signify the crashing of the second plane into the World Trade Center at 9:03A, the plane that made us all know that it was no accident that the first plane had crashed, and that that day would never be like any other day. I remember that on that day I was sitting on an American Airlines flight that was supposed to take off at 8:45A to Los Angeles, when it was delayed for take off because the two gentlemen seated in front of me needed to get off immediately, and because no one can leave a plane without claiming their baggage, the plane was delayed. I later found out that those two gentlemen where reporters and that they had already heard about the crashing of the first plane into the Trade Center…so we sat. While we sat, the flight attendants on the plane I was on, started to receive upsettling phone calls from their friends about people that they knew, who had been on the plane that had already crashed. I decided to call my husband (he worked across the street from the Trade Center), and even though I was pretty sure he hadn’t left for work yet, I was thinking he probably shouldn’t. When I reached him, he turned on the TV, and for the first time he saw what was happening…that was about 8:55A. I sat on that plane waiting to take off...and then the Captain of the plane made an announcement informing us all about what was going on in the world, that an American Airlines plane had crashed into one of the Trade Towers just around the time we were supposed to have taken off, and that another one had just crashed into the Second Tower, all flight transportation had been canceled and that they were releasing us from the plane. As I walked through JFK, I heard through the hysteria in the airport about the third plane crashing, and I began thinking I might have to raid the vending machines because I would have to spend the night at JFK Airport, at the same time I was wondering if this could perhaps be the World’s Last Day. I made my way through the crowds, went outside and found a Transportation Cop and asked if there was any transportation out to Long Island. He said that there usually was a bus every half hour, but he hadn’t seen any in a couple of hours, and then he said “But wait, you’re in luck, their it is, that’s it, it will take you to Roosevelt Field Mall”. I jumped onto that bus, there were three other people on it; we drove very slowly through the crowds, street traffic, and panic. It took us over two hours to get to the Mall, when it would usually take a half hour. I was on the cell phone with my sister (which also was amazing because service was not easy to get), when she told me the first Trade Center had collapsed. My husband was able to pick me up at the Mall; he did not go into work that day...you were lucky if you didn't have to go anywhere that day. I got home around 1P; I got to see my family on that day. I lived to see another day. I’ll never forget that day. We should never forget that day.Heidihttp://www.blogger.com/profile/16471007237878095118noreply@blogger.com0tag:blogger.com,1999:blog-3225905841020314965.post-70365439196818940342010-09-07T12:17:00.000-07:002010-09-08T20:06:12.482-07:00Time FliesThis August 30th was the 20th Anniversary of the first time I had brain surgery. In 1990 I was the mother of a one-year old baby girl. Jon and I moved four times the year before that, because our apartment had been destroyed by the Con Ed Department Steam Pipe Explosion-a true New York City story. We had decided a lucky 15 minutes beforehand to take a walk with our then 4 month old baby girl, and because of our miraculous timing, we had been left unharmed…had the timing been different, that story could have been different…our next door neighbor was killed in her apartment. One morning after happily and finally being moved into the last apartment, I woke up and whacked myself in the eye with a phone…who does that? Guess I couldn’t wait to pick up the call. Phones in those days had a great deal more heft to them than they do now and I really felt that heft…I genuinely saw stars, and the next day I saw double. I called my eye doctor and described my problem, made an appointment, and barely made my way to his office. When I arrived, he did his Eye Doctor thing-he looked in my eyes, had me cover one eye, then another, gave me drops, then looked again. At the end of that visit I was prepared for the diagnosis, and he told me “There’s nothing wrong with you”. I said “How can that be-I can’t see? Is that an ophthalmological point of view or a neurological point of view?” He said “It’s an ophthalmological point of view.”…and off I barely went as I made my way home to begin my long research project to find out what was wrong with me. Little did I know on that day that that whack in the eye with the phone actually would serve as an alarm bell about a tumor in my brain that otherwise I might have gone years without noticing, but the swelling is what caused me to have tests that I wouldn’t have needed until perhaps it was too late to do anything. Little did I know on that day, that twenty years later that the project I was embarking on, would be such a long one, that the lessons would be so numerous. Little did I know on that day that many years later after two brain surgeries, many MRI’s, and many opinions I would discover that what I had was a very rare kind of cancerous brain tumor. What a long, strange trip it’s been. My oldest daughter is now 21…we just dropped her off at college to complete her Senior year, our youngest daughter is 14 and just started her first year of High School-we’ve moved several other times, most recently this year. This year in particular has been a difficult one, but it’s my hope to be able to pick up this blog where I left off last year, and to pass on the lessons that I’ve learned over the last 20 years. The education that I’ve received is not one that I would have chosen, nor would it be a school that I would have attended…but I did, and the information I’ve learned is worth others knowing. Beyond that, I just received confirmation from NYS, that BRAIN MATTERS INC. is now my official non-profit corporation…this took longer than I thought, and it’s still my hope to walk from my house to Massachusetts General Hospital next Fall to raise funds and awareness for brain tumors. I thought it would be this Fall, but between the stress of this year’s other events and some post radiation effects that slowed me down, coincidentally the paperwork timing and my personal timing worked out; even if I was physically ready to walk, paperwork-wise I wouldn’t of had everything in place. My reason for walking to Mass General is not only because that was where I went for Proton Radiation two summers ago, but because as someone who has seen many doctors and been to many hospitals, it was one of the best and most positive experiences I’ve had within these many years, and I’d like to give back what I can to them as I start on this next chapter in my life. As of my last visit this June, my tumor has not grown…that’s great news! The concept of being able to think more full heartedly about the next chapter in my life is not one that someone whose been where I’ve been takes for granted. I’m back, we’ve moved into our new house…I'm looking forward to the future. My hope is that by my sharing what I've learned during these last 20 years, that it may make it just a bit easier for someone who is about to face similar circumstances...even just a bit, and for me personally, maybe it feels like there's a reason for this School I've been made to attend. May The Force Be With Us All!Heidihttp://www.blogger.com/profile/16471007237878095118noreply@blogger.com3tag:blogger.com,1999:blog-3225905841020314965.post-80806389070188416312009-12-14T07:50:00.000-08:002009-12-14T13:34:01.573-08:00Before You Can Walk, You Have to Ride…Or It’s Off to Musa’s Slaughterhouse We GoIt’s still my intention to walk the 227 plus miles from my house to Mass General Hospital this June; that is of course once I create my Non Profit Organization (which I find out takes time…lots of time), fill out paperwork to attract and attach various sponsors, contact sponsors and wait for them to call me back (which I find out, takes time…lots of time), train to walk long distances in all kinds of weather, and drive the walk to see what neighborhoods and terrain I’ll be going through. Will I need a weapon? Only kidding. How many hills will there be? How steep are they? Will I need rock climbing shoes? Only kidding.<br /><br />So on September 26th (quite a while ago now, I was hoping to blog sooner, but these have been busy times), Rachel…my 13 year-old daughter, also my navigator, as well as my cameraperson, set out to make the ride of the walk. We had to go on all the side roads…no highways-that’s not how the Google Walking Map is laid out. We had to go over only the bridges that you can walk on; that would not be the Throgs Neck or the Whitestone Bridge…this is a story for another time. After driving 20 miles we had made it just over the 59th Street Bridge. This took us about an hour and 15 minutes…not so unusual really…not so usual yet. It takes me about this long even if I was to take the highway, and not the side roads to get to the city. Once over the bridge, we have to traverse ourselves through traffic, traffic lights, people crossing…(just because they feel like it), as well as the directions themselves. My navigator was doing an excellent job. We drove about 10 miles to get to upper Manhattan or Harlem, and from here we traverse uptown to the Bronx…the South Bronx. I think that until this day, while I’ve lived in New York most of my life, I thought that the Bronx was the Bronx Zoo-it’s not…not even close. Rachel and I drove about 1 mile, when we came to another light. This part of the Bronx was filled with many burned out warehouse type buildings, and boarded up apartments. At the light, we looked over to our right, and noticed a warehouse building with a wide open space about 20 feet long and 8 feet high, there was wire gating across the lower part of the opening…and inside some very cute sheep, goats, chickens…very nice. Rachel turned to me and said “this is a strange place for a petting zoo!” While we waited for the light to change we scanned the front of the building to see more about what we were gazing upon, and then we noticed this: “Musa’s Slaughterhouse-You Pick ‘Em, we Kill ‘Em!”. Wow, this is some interesting neighborhood. Rachel was sure that it must be illegal and that we needed to contact the police; I told her that I was equally sure that they knew about it, and that’s it mustn’t be illegal. She then said “you’re going to be walking here?” I told her that I probably would, but that I wouldn’t be alone when I walk; after I said that, I thought “I’m going to be walking here?” From Musa’s it took 20 more miles before we were out of the Bronx, (can’t say the scenery improved much), until we hit Pelham in Westchester. Twenty miles though, that may be the limit to how much I will be able to walk in a single day. What if I can’t walk that far on that day? I would like to stay overnight at a place relatively close to where I stop walking for the day. Not too many places along the way to stay here. Definitely stuff to think about. <br /><br />We drove 80 miles to Bridgeport, CT and it took us 5 hours, this was only one third of the total trip…we decided to hit the open road, to make up some time. I was fairly confident that the next 100 miles of terrain along the Boston Post Road would be mostly the same. We drove about two hours before we got off near Hopkinton, MA (about 28 miles from Boston), I wanted to see the hill that is often referred to during the Boston Marathon as “heartbreak hill”. How steep was this hill? It definitely was steep, but not as big an issue for a walker as it would be for a runner…but of course I was driving, not walking…not yet anyway. Again, this will be something to think about. All tolled it took Rachel and I ten hours to drive from our house on Long Island to what will be my final destination in June-Massachusetts General Hospital. We were exhausted, Rachel was in tears; I could have used a drink. We did locate a Dairy Queen at the tail end of the trip just outside of Boston…it lifted us up a bit. There aren’t any Dairy Queens anywhere closer than two hours from where we live, so this was a treat. This trip would usually take 3 ½ hours to drive, and will probably take me, depending on how many miles I walk a day, and what my ultimate route will be, somewhere around 16 days, or so. Again, there are definitely things to think about.Heidihttp://www.blogger.com/profile/16471007237878095118noreply@blogger.com0