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