Who Am Us, Anyway?

I’m a father, husband, brother, uncle, son, friend. I’m occasionally a photographer. I live in Maine with my lovely, talented and patient wife, and a bunch of cats. 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 fatigue, 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 depend on a generous network of friends and neighbors 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 express my gratitude, 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.

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14 thoughts on “Who Am Us, Anyway?”

  1. wonderful photography! I agree with you about integrating themore interesting parts of your life in your blog. We all have passions and interests, MS is just along for the ride.

  2. Hi,

    I came across your blog via the Carnival Of MS Bloggers, I am Squiffy of Squiffy’s House of Fun, on the list ;O)

    You may be interested to hear about a new, unique and inclusive Global Multiple Sclerosis Community providing not only up to date MS News and Stories, but a place where those affected by Multiple Sclerosis can communicate with others affected by the disease, and the wider public, by means of Online Blogs, Discussion Forums and Net-based social interaction, which the Multiple Sclerosis Resource Centre launched onth March 6th in collaboration with cre8Buzz.

    Why not come and have a look, there are already some established MS bloggers signed up, and maybe join in, it is a great way to promote your blogs etc.

    http://www.cre8buzz.com/multiple_sclerosis

    squiffs ;O)

  3. you are life and life is you, magically and wonderfully. I once passed Tiny Tim on the street near the U.N. building. It was 90 degrees and he was in a purple felt suit, sweating.

  4. Ohhh well look at your new and wonderful blog! I love it! I hope you post lots of your photos. Nice to see you my friend…I will visit frequently.

  5. I just found your blog and I’m really enjoying it. It’s so comforting to see common ground. I have written a couple of posts on my ms blog that deal with what you describe here “having ms and whether it has you- if you’re interested come visit.
    http://mslol.wordpress.com (specifically blogdentity and blog blog blog is that all you ever write about)

  6. Hello Stephen,
    Glad I found your new blog, been wondering how you were doing.
    You used to occasionally posted comments on my blog.
    Hope resting worked for you.
    Take care.
    Love,
    Herrad

  7. Hi,
    Disease.com is currently in the progress of choosing blogs to receive recognition from Disease.com as Top Blogs. This award is not meant to be anything other than a recongnition that your blog gives information about tactics that directly or in directly raise health awareness and prevent the transmition of Disease. Simply place the award banner code on your site and your blog will be listed as a Top Blog on Disease.com. Disease.com is a Private Global Health Watch Group. Whose goal is to promote healthy living though the spread of information globally. Thank you for your dedication to your blog. Please email me back for the award banner code.Leave subject line blank to make sure you get the award and to avoid spam,Please.

    Thank you,
    Natasha Alison.

  8. I just came across your blog. I currently have an undiagnosed (probably neurological) condition and I’m looking for others in similar situations or those with similar conditions. Anyway, great blog 🙂 Also, I spent a year living very close to the University of Glasgow (my ex was a student there) so it was interesting to see that your son went there.

  9. It’s been awhile since I visited – forgot how much I enjoy your writing. I especially like this “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.”

  10. You are so fortunate to have a wonderful support in your, obviously, amazing wife! Chronic disease is hard to navigate, isn’t it? 😢 We just have to get on with life in different ways. . . Now tell me about Tiny Tim (😃) and was it at the same event that you cooked for Todd Rundgren?

    1. Wow, no one has ever actually asked. In a previous lifetime, I was working as a cook at a great dive bar in Chichester, NY, (The White Water Depot) right outside Woodstock, home of Bearsville Studio (and The Band’s Big Pink house.). The bar somehow managed to book the occasional name act (we had The Persuasions for a night!). How or why they booked Tiny Tim I don’t get. He was bloated and pale and pasty and creepy, probably like Elvis at the end, and yes, he did Tip Toe Thru The Tulips. Everyone wanted to pose for pix with him, I didn’t want to get that close to him; I held the camera. A different weekend, it was Rick Derringer’s wife’s birthday, a bunch of folks from Bearsville booked the restaurant for the night for a party. She came back into the kitchen, wrecked, asking where dinner was. Raymond the crazy chef waived a big knife at her and told her nothing left the kitchen til it was ready, and it wasn’t ready yet. At the end of the night, I was alone in the kitchen cleaning up, Todd came back, thanked me for great dinner and we shook hands. “Anytime, Todd.” Now that I write it all down, I realize what a weird summer it was. Thanks for asking.

      1. OMG! Yes, a totally weird summer! Thanks for writing all that. 😃 I remember seeing Tiny Tim on the news a few years before he died and also thinking “creepy”! Do you like Ben Folds music? He could write an amazing song about the day of Rick Derringer’s wife’s birthday. Do you know the song “Doc Pomus” from the album “Lonely Avenue”? That is what made me think that craziness would make a great bit of music. Hope you are as well as you can be!
        http://www.songfacts.com/detail.php?lyrics=20908

      2. Thanks. I do like Ben Folds, tho I don’t listen to him much. I’ll have to add him back into the mix, that song in particular. I get the reference to “the farthest stall.”

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