Tuesday, October 29, 2013

Lost on the Isle of MS

MS can be a lonely disease.  With so many invisible symptoms, often it feels like you are on a remote island.  Not a nice one, of course.  Thankfully, no indigenous headhunters exist in this dominion but there are plenty of figurative bear traps to avoid, never knowing if that next step will produce throbbing pain, a stumble or spill.

Visibility can never be taken for granted.  A fog doesn’t roll in; it appears suddenly, impeding my vision for a few minutes, the entire day or much longer.  There is no weather forecast or crystal balls to predict my health for the day and there is little knowledge among the local medicine men as to why my vision comes and goes.
Even my mobility might suddenly be impaired; numbness in my extremities that limit my movement.  Loss of balance is frequent; often I awake in the morning with bumps or bruises, unable to remember how I got them.  Chronic battles with tingling or other curious sensations is common and sometimes other maladies might arise, perhaps one foot dragging behind the other, or the sense that everything around me is spinning.
It’s a rough terrain, leading to constant exhaustion from the moment the sun rises to the final moments before I drift off to sleep.  The landscape is not quite quicksand, but it’s close.
With so many other symptoms of the “invisible” variety, one might even think there is an enchanting quality to this island.  But the man behind the curtain isn’t an illusionist, entertaining the audience by pulling a rabbit out of his hat; instead, it’s more akin to the “Smoke Monster" from Lost.  And like in the show, this mysterious creature’s origin and complete impact is never really understood or explained…but you still know to tread lightly when it appears, as it wreaks havoc for all in its path.
Island folklore suggests the best cure is to ingest or be injected with mystical elixirs, containing side effects that outnumber ingredients. These potions might restore mobility or improve vision, but I never feel quite the same, as the damage from the previous setbacks always linger.
This summer I spent a lot of time "lost" on this island and even mapped out a few new areas that I’ll be sharing soon. 
Stay tuned for next week's episode... 

Similarites exist to the island of "Lost" (Jäger keeping me company)

1 comment:

  1. Hello Mike –

    My name is Sean and what follows is a little something I posted on the boards at one of the MS sites I belong to:

    *I had an interesting experience last night. Wife had a coupon for 1 week free at the local 24-Hour Fitness center. She wanted to swim. She wanted me to go with her. I didn’t feel like getting in the water but agreed to go. I would read while she swam.

    We got there and went in. She had to fill out some paperwork and the fella signing her up asked me if I was going to use the weights or swim. “Neither – I’m just here to read.” He smiled oddly but continued with the ‘pitch’ about the facility. He brought up the basketball courts – perhaps because I’m tall. “Got intra-league play tonight. Some kids of NBA players and a couple of former NFL guys. They run full-court games.”

    Great. I played basketball frequently and with great gusto for most of my life. I can’t anymore. I can’t run like that anymore. Or even very well anymore. I could play H-O-R-S-E. Or MSSUCKSBALLS. Or participate in free throw contests. But no running.

    But that wasn’t the moment I truly felt out of place. That happened later when I was waiting for wife to reemerge from the lockers and I was sitting in the main thruway between reception and the lockers (really nice and modern facility btw). People coming and going. Lots of chit chat and banter: You workin out? You swimming? You lifting? And so on. There I am reading work by poets with disabilities talking about how the world at large defines them via the visual representation of defects or breakdowns that the physically impaired have absolutely no control over. And there I am in my work clothes: shorts, shirt, hiking boots. Looking totally normal on….the…..outside.

    I am struck every few weeks by this peculiar situation that I find myself in. The MS hasn’t ravaged me yet. It’s like I am stuck inside the membrane that separates unimpaired and impaired. I’m a ‘tweener. And I’m reading poetry and taking notes inside a state of the art fitness center where I am not participating in the ritualistic honing of my body.

    I didn’t feel strange so much as I was struck by the juxtaposition of me and them. And by this sort of limbo state. Anyone have similar experiences….the feeling that you are stuck in a Jacques Tati moment? I am curious.*

    Curious about our extraordinarily curious disease indeed. I was Dx 4.4.2012 with PPMS. Still work. Still function relatively close to normal. Still write quite a bit. Primarily poetry for the last year or so. Moving back to fiction soon for a while I think. Someone I know had a link on their blog to yours. I like the way you write. I like the fact that you address MS straight on without clouds and fluffy liners.

    Flattery from a complete stranger? Yes I have an angle. I would like to ask you to consider submitting something (or repurposing something) for our upcoming Volume 2 release. Volume 2 of what?

    I was fortunate to meet a like-minded person on yet another MS social site. She had an idea for an anthology of prose and poetry written and compiled by people with MS. The ‘We Write for the Fight’ MS social group released Volume 1 of the Something On Our Minds anthology in June of 2013. A bit behind schedule but not bad for an editorial/production staff of two. We are shooting for a March 2014 release for Volume 2. Word of warning: if you opt to ‘Look Inside’ at Amazon please don’t be put off (or alternately impassioned) by what, at first glance, only appears to be religiously themed material. It’s quite a bit more diverse than that.

    I’d be tickled if you’d consider it. I would keel over with elation if you said yes.

    One last note: the book is a 100% benefit for the NMSS. I’m sure there are others out there as well. And I would be surprised if you haven’t been approached already by…..the others.

    Have yourself a great Halloween.


    Sean J Mahoney


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