I’m a father, husband, brother, uncle, son, friend. I’m a photographer, a sometimes writer and very occasionally a musician. I live in Maine with my lovely, talented and patient wife, a cat named Toki Wartooth. My son and daughter both currently live in Maine.
I was given a diagnosis in 2003 of multiple sclerosis. At the time, I was working a challenging, full-time job in E-Commerce. I was walking 2+ miles every day, going to the gym a few times a week, and spending a lot of my free time in the 4 acres of woods around my house, sometimes just walking, sometimes with a chainsaw clearing paths and taking care of my tiny bit of the planet. It was one of my great joys. Weekend mornings were often spent wandering the Portland area with my camera.
First presenting symptoms were drop foot – tripping over tiny cracks in the pavement, and optic neuritis. From there, it seems like it was pretty quick progression from walking like a drunk, then with a cane. Because my right foot was not responsive, I adapted my car with a left-foot accelerator. I got my foot tangled in the pedals one day, and had a very scary car accident – thankfully, in a parking lot, and thankful that the big propane tank I hit did not explode, and that I didn’t hit anyone in an out-of-control dash out into the street. I decided then to stop driving and hired a high school student to drive me to and from work. I started using a wheelchair at work. Then stepped down to a less stressful customer service position. I reduced my work hours to the bare minimum, and soon realized that it was time to leave – to “retire,” as my co-workers called it. I was out of work, and navigating the dark maze of disablity insurance, by January of 2010.
I can no longer drive, and have to hire a driver to take me to doctor appointments. I have not walked out in my woods, or anywhere, for several years – just looking out the window at all that green sometimes drives me crazy. Like a starving man looking in the windows of an all-you-can-eat restaurant. I can’t play my guitar or piano. I can barely write with a pen, and typing for more than a few minutes is challenging, to say the least. I use a power chair and a stair-lift in my house. The physical independance that I cherished is moslty gone. I am endlessly fortunate and thankful to have friends and family – mostly my wife – to support and care for me. I continually struggle to find ways to expand my horizons, and find things to do that feed my soul.
MS affects the course of my life, and influences where I go and what I do, and every now and then, despite my best efforts, overwhelms me. Others with chronic health issues will know what I mean. If, for some reason, you want to know more about my journey, follow this blog or just ask.
Some people use the catch phrase “I have MS, but MS doesn’t have me.” Whatever it is, I have it, and it has me. Just like photography has me, and music has me, and writing has me, and being a husband and father has me. The slow crumbling of my brain is no less a part of me than anything else, and affects me just as every other facet of my life does. It’s all just life, and life most definitely “has” me.
Interesting fact about me that you might want to ask me about when we meet at an otherwise boring cocktail party: I once cooked dinner for Tiny Tim and Todd Rundgren.