It has been 10 years since I was getting ready to begin my walk from my house on Long Island, New York to Massachusetts General Hospital. I had planned over a year for that walk. I started thinking about it after my family and myself had finally moved to a house we had been waiting a long time to move into, and I was not able to get anywhere else afterward…unless I walked there.
It had taken us longer than it was supposed to make our move. The people whose house we were planning to move into had taken much longer than expected. We had to be out of our house on a certain scheduled date and we kept to our contract. The couple of weeks we intended to be living with my parents in a nearby town, had become an unforeseeable extremely stressful month and half. We celebrated the incoming of 2010 living in my parent’s house with all our stuff being stuffed into storage and living out of a few suitcases. My husband and I were just casually hanging out in my pink high school bedroom. Not! There was nothing casual about it. My 14-year-old daughter was next door in my sister’s bedroom next door with her bunny Binky was in the cage. Our two large dogs, one old and one a year-old, were trying to figure out what was going on. My Dad not used to living with anyone other than my Mom for the last 30 years, left the house to go on one of his usual forays to the grocery store after only our first week with us, backed out of their garage and bashed into the side of what was then only our two year old dentless Prius. Not after that! Off to the shop it had to go! There it stayed for two weeks while they fixed the whole driver side door. The stress was enough to make anyone feel they needed a short stay in a mental establishment. I had only finished my Proton Radiation treatment at the end of 2009 and was told I might experience seizures as a potential side effect. During the stress of all the moving, I began to sense unfamiliar out of body feelings. Was I clairvoyant? No. I am familiar with those feelings now, I have felt them many times. They are partial seizures, but then they were foreigners. As the days which turned to weeks went by, I felt them more often, and what might make someone feel like they needed that short stay in a mental institution, ended up putting me in the hospital close to the end of our six weeks stay with my parents. I could not find my words, later I could not speak my words, eventually I could not remember anything, I woke up remembering nothing after obtaining a quick ride in an ambulance and my husband following a short distance behind those flashing emergency lights. The doctor told me later when I woke up in the emergency room that I had had a grand mal seizure. My husband filled me in on some of my alarming convulsive details. I spent two days in the hospital, I was then put on medicine which has since been finessed. I missed the actual closing of our house-legal permission was given. The house was closed while I was closing out my last stay in the hospital. I also missed the actual moving out of my parent’s house into our own new house. We lived in our house for years before I found things I packed and wanted, and the movers placed where I would not have chosen. I know I would have known where they were if I could have been at the move.
And…I could not drive for six months, just walk. It gave me plenty of time to think about what to do with my time. It’s as they say-always darkest before the dawn. I could not take myself to shop, I could not pick up my youngest daughter from school, I lived too far for me to walk there. I could walk my dogs, I could clean things in the house, I could not get to my doctor’s on my own, I could read and watch TV, I could write and be on the internet, I could create collages, which I like doing. I could get to the library because it was right down the block from the house we had moved to, I could talk to my older daughter on the phone-she was in her sophomore year of college. I could not get to my parents which were in the next town-they drove to me, but not that often. We talked on the phone. I couldn’t get to the drugstore. You get the idea. There were places I could go and places I couldn’t. I was frustrated. If it was only a few weeks, it would have been ok, but six months was a long time. I also felt lousy and I was still figuring out the right type and dosage of seizure medicine I needed to be taking. What was it I could be doing to make a difference during this “walking time”?
I had closed my business about two years previous in order to undergo various brain cancer treatments, first the second brain tumor surgery I had, the other thing was Proton Radiation. What could I do? As I walked, and walked, and walked, I decided it was a good part of my day. I had lots of time to think. Plenty of time to think. That’s when I began thinking of what it would take to create a Non-Profit public charity and to try and create a fundraising walk. If I could create a non-profit, where would I walk? I decided that I would walk from where I lived to where I was treated. Massachusetts General Hospital saved my life! Before I met Proton Therapy at Mass General and the doctors and nurses there, I was told I probably wouldn’t live very long. It was a year after I was able to drive again with the help of my friends and family, that I created my non-profit, Brain Matters and designed my walking route on mostly 25A. We arranged who I would be staying with along that route, and I planned and did talk when I could talk at various places about my experience to make people aware of the need for fundraising for BRAIN CANCER RESEARCH. That was 10 years ago this month as we embark on our 10th fundraiser.
We’ve changed the way we do things a bit, I’m not walking 250 miles like that first year. I’m 10 years older and so are my friends and family. Many personal things have happened during that time, many good, some not good, but I’m still trying to make people aware of the need for fundraising for BRAIN CANCER RESEARCH. We do our fundraisers on Charitybuzz, and to create and educate the public about brain tumors, it’s just as important. Some things don’t change!