I 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.
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.
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
“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.
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!
Wednesday, January 18, 2012
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
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 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-foundation
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 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-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.
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.
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.
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.
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