Saturday, October 8, 2011

Some 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.

Monday, August 15, 2011

You Must Row With The Oars You Have

This walk is about so many things for me…

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.

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.

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.

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 Brain Matters 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 www.brain-matters.org

Wednesday, June 29, 2011

As If Walking Wasn’t Enough

In 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.

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?

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.

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.

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.

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 na├»ve 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-foundation

Thursday, June 9, 2011

The More Things Change, The More They Stay The Same

Yesterday 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.

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.

Friday, May 27, 2011

What 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 need 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:

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 competes. 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.

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?”

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.

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, “Oh, he just died”. 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 “Oh, I’m so sorry to hear that!” and she quickly said with more of an upbeat almost corrective tone, “oh, no, no, he’s fine, he’s just inside”. 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.

Friday, May 6, 2011

What a difference a day makes

One day and 2.5 miles down the road from my school experience from yesterday, I sat down to talk about Walking Miles 4 Brain Matters 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.

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 Walking Miles 4 Brain Matters. I told him the importance that this particular school had for me, I also explained to him that Brain Matters 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.

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.

Tuesday, May 3, 2011

Come 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 Walking Miles 4 Brain Matters 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 Walking Miles 4 Brain Matters. 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 Brain Matters (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 Brain Matters. 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 Walking Miles 4 Brain Matters 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?

Tuesday, March 29, 2011

Friend of a Friend

A 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 I 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?

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!

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.
This is a step.
This is action.
To learn more go to www.braintumorfoundation.org

Wednesday, February 16, 2011

On A Mission...

A Mission 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

A Mission Statement is supposed to be an official statement of the aims and objectives of a business, but it’s so much more.

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, Brain Matters 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 Brain Matters Mission Statement…this is my mission, my commitment, my pledge.

Brain Matters 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.

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 “Walking Miles 4 Brain Matters”. 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 Brain Matters cause. Brain Matters 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.

Part of the funds raised by Brain Matters 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 Brain Matters hope that the walk will become a yearly event, from which many other things will happen.

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.

Tuesday, January 25, 2011

May They Always Come Back

Oh 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.

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.

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.

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.

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!