Documenting

Thanks to the UK’s MS Society for ads like this. There are so many very basic MS questions that we all will be asked, and so little in the way of basic answers that can be returned. “How are you today?” is a loaded question that has taken many of my adult years to understand how to reply. Well how to reply without making people very uncomfortable, that is.

I have been living with Multiple Sclerosis for approximately twenty years. This astonishes many people who’ve known me since before high school, and I often see the same (in a generalized nutshell) reactionary procession on a face I’ve just shared my Dx with: surprise, then processing — remembering that time I [fell, dropped a glass, tripped, used the wrong word, aspirated and drooled on their floor], blaming themselves a little for not having been the one to call my health out on it then asking the first question that comes to mind in order to fill the brief pause they’ve unintentionally allowed. I’ve been the same way for most of my own life when faced with unsavory information that validates my fears about the validity of human existence… I’m guessing most people are taken aback at least a little when such fatalistic gems are offered by people they care about.

But facts are saviors, not sins. In the two decades during which I was still growing, MS became my “normal” before I ever knew something was “wrong with me.” I have to use a lot of quotation marks here as our culture no longer adequately covers certain ideas with a dictionary. When I talk about living in a “state fair funhouse nightmare,” I am using words that will convey the way I feel much of the time. “Dizzy” doesn’t cover it — the entire world often exists to me at an 87° angle, my vision comes in and out of [focus, double, depth perception]. I understand my world to be at varying stages of a very long hall of mirrors. It has been like this since a 2003 exacerbation, and I am begrudgingly used to it. Could I live any other way but to be?

Turns out that I have unwittingly become very good at falling. This is not a talent, per se — at least, not one you would have really ever given much thought to. It’s no playing the piano (I cannot play the piano). I’ve got about 10-12 good “can you beLIEVE I didn’t get more hurt than that!?” fall stories which could be the fodder for a very nice short story anthology. I have fallen backwards off of a 5′ high wall onto a brick landing. I have fallen down many staircases and used banisters Cirque du Soleil-style for prevention. I once saved 2lbs of Indian food from spilling during a fall by directing my fall into a roll so I could safely drop the bowls into a basket of clean laundry (where they were cushioned from toppling) before hitting the ground on a well-padded haunch. That padding has helped more in the past than it does now — when I fell off that wall in college I was still at 300+lbs (what a sight it must’ve been!).

But I am more than crashing well into the ground. I am more than my ability to type, but not always to read. I am more than the fatigue that keeps me seated for longer in a day than I’d like. It sure doesn’t always feel like I am, but I can remind myself in places like an internet blog so that I can check in on this self when the more dour self appears.

I have spent my life learning, and re-learning how to live in the pale machine I was born into; it has taken different courses, but who among us has a life that hasn’t veered? How long have you been living with MS, and what are your best ways of coping with your worst moments?