Wednesday, August 24, 2011


“Psychiatry's chief contribution to philosophy is the discovery that the toilet is the seat of the soul.”
  -Alexander Chase

This week as I began to toss around ideas for topics to write about, I heard myself in my head sounding like a cut-rate stand-up comedian, with jokes beginning along the lines of: did you ever have to go the bathroom really badly and find the bathroom at the bar/restaurant (fill in the blank) isn’t accessible after all.  And then you had to a) ride your scooter home (if you were even near your home) because your scooter couldn’t fit through the door to the bathroom or b) take the water bottle out of your scooter and use it as a urinal (disgusting!) because your scooter couldn’t fit into to the “disability” space and it isn’t as though you can just walk the four feet separating you and the toilet.  But I couldn’t come up with a punch-line.  Simply put, the situation is not funny.

For those of us with MS and bladder control issues, one has to always think ahead; whenever venturing out into the world, one has to worry about the possibility of finding a place to pee.  You map out in your head the accessible bathrooms and become some kind of a restroom connoisseur. You know all the high (believe it or not, Old Navy on 6th Avenue, clean and roomy) and low (Tompkins Square Park, too many homeless) end bathrooms in most of the city and keep a vague map in your head of where is best to empty your bladder.  Some have suggested I put together a handbook of sorts for people in my situation, to which I respond, “I really don’t want to learn more about this topic than I absolutely have to.  You know, too much information.”

'Nevertheless, Starbucks and Barnes and Noble, who for all intents and purposes are the closest thing the city has to public restrooms, can be lifesavers in a pinch. Movie and conventional theaters are pretty reliable, although it is in these places I’ve come across the worst of the worst: people who don’t want to wait on the longer public lines and dive into the disabled restroom for convenience and to keep me waiting, desperately needing to pee. Recently, I was at the Shubert Theatre on Broadway with my son to see Hair; I was about five feet away from the disabled rest room and the able-bodied young woman saw me coming and quick slammed the door in my face.  I am not typically prone to profanity but I fairly lost it on her when she came out a few minutes later.  On other occasions, people have thought nothing of using the disability toilet when other toilets are free. I guess they like the openness of the space. The new Yankee Stadium has disability stalls with grab bars but a scooter cannot fit inside.  Excellent planning, guys! 

And whenever possible, try to have a back-up plan. You never know when a toilet is going to be broken or simply unavailable and as you all know, when you gotta go you gotta go, which is why I’ve taken to discreetly carrying one of those portable urinals with me wherever I go.  Oh, the adjustments one has to make. 

If all else fails, feel free to stop by my place: 145 East 15 Street, #7A, New York, NY.  If I’m home and the bathroom is free, you’re most welcome. Just call first.

As my dad always said, “Keep fighting the good fight.”

Tuesday, August 9, 2011


Kryptonite is a material from the Superman mythos —the ore form of a radioactive element from Superman's home planet of Krypton. It is famous for being the ultimate physical weakness of Superman. - Wikipedia

It’s not the heat it’s the humidity.  – proverb       

T.S. Eliot wrote, “April is the cruelest month,” but for those of us living with the effects of multiple sclerosis in the northeastern United States, July and August can be far crueler. When climate change chased temperatures over 100 degrees with crazy humidity here in New York City a few weeks ago, I was left with two choices: to journey outside into the brutal heat for more than a few minutes and feel its debilitating effects or stay home planted squarely in front of the air-conditioner. Fortunately, my favorite coffee place is just two blocks away and the perfect destination for iced refreshment.  On the few occasions I ventured out further into the heat, as when I went to the local greenmarket at noontime on a recent blazing Saturday, I ended up feeling like Frosty the Snowman when he melted inside the greenhouse. Fortunately my always helpful 12-year-old son Lucas was there to help mop me up and restore me to my former condition.

For years, any time a friend asked what effect the heat had on me, I referred without humor to Superman and Kryptonite because it I felt it was the most suitable way to explain how the heat makes me feel. It is as if Lex Luthor has defeated me once and for all.

The irony of the situation is that as result of undergoing an air-conditioner-fueled big chill, my body temperature decreases to a level where I can be extremely efficient when I go down the block to the gym and find I can lift more weight than under ordinary circumstances. But the wild swings in function can really screw with my mind, I tell you.  My old man used to say he didn’t know “if he was coming or going,” Now I completely understand what he was talking about.

It is times like this that I wonder if I might be better off moving to a more temperate climate, somewhere in Canada or Northern Europe where life could be more manageable. Alas, it would be difficult to uproot my family and move away from the doctors I depend upon and the friends and culture I value so much. Plus, debillitating heat notwithstanding, New York is the city of my dreams. From the time I was a child, I always knew I’d end up here: it was destiny. Besides, MS has already forced so many adjustments upon me. Leaving New York City is simply one I am not willing to make.

And I know I could wear a cooling vest to alleviate some of the heat’s trauma, and I suppose I will eventually, but for the time being, I’m a little self-conscious about it. Twice a week I go for physical therapy, but after 25 minutes traveling in the heat on my scooter, I require half an hour of icing just to make me functional enough to undertake my usual routine: navigating a couple of hundred feet with a walker (a considerable accomplishment for me under the best of circumstances).

On certain days, like this past Saturday, it can take hours to recover from the heat. No matter how much time I spent in front of the AC, I just couldn’t reach a productive level so when I went to the gym it was an especially challenging session.

It is weather like this that can make me a little wistful and nostalgic, too.  I think of some of the summer activities I can no longer undertake, like swimming in the ocean, walking on the beach, or riding on a roller coaster. Lucas gets frustrated sometimes when I can’t shoot baskets with him. Yet, I am able to appreciate the small pleasures life has to offer: reading The New York Times under the trees at our little neighborhood park, going to an Adele concert and sitting in the front row designated for folks like me with disabilities (alright, MS can have its perks), enjoying lobster rolls from Luke’s in the East Village, watching Derek Jeter get his 3,000th hit, with a home run no less.  

I will not be defeated.  I came to play and I’m in it for the long haul.  I hope you are, too.