There you went, taking your body for granted again. It worked normally… or at least, the way it worked seemed normal to you again…
…and then it didn’t.
There really aren’t words to describe the moments when someone with MS realizes that a new pain is something she’s going to have to learn to live with the rest of her life. You know… or not. Depending on what her body decides to do… kind of spontaneously, actually. All she knows is that the new sensation frightens her, and the new sensation is not pleasant, and aside from being annoying, it increasingly demands attention – as though it were growing — screaming inside her to listen.
Or, you know, maybe it’s just me.
I just get this feeling I can only ignore pain for so long before it just keeps ramping up and then, who wins? I certainly hope there’s a way past that, but not a way that kills the rest of my life… that is, what life I have left.
I’ve come to realize, that while there are many, many avenues yet open to me (and trust me, as an eternal optimist, I focus on those avenues almost exclusively!) there are a kajillion more that have closed.
I found myself deeply saddened recently by my new fear of going into a swimming pool. I mean, what if I have a seizure while I’m under water? What if I have one while I’m holding on to the side of the pool and I accidentally knock myself out? Do I have to stay in the shallow end for the rest of my life? And if so, what’s the point of going swimming?
*sigh* Sorry. I’m really going at this in a “stream-of-consciousness” way today. Please forgive me.
So here I am, a 28 year old woman, in the middle of a relapse, waiting for her bar exam results, lamenting her limitations, and finally admitting to the fact that it’s been more than a year since she’s been able to work because of her disability… and that she still doesn’t know if she even feels comfortable when she applies for jobs today.
The seizures definitely come on stronger with the relapses. I’ve had so many more of them recently. That’s why I told my boyfriend to go out with his friends this afternoon/tonight without me. I hate being the girlfriend who stays at home and sends her boyfriend to hang out with a couple on his own, but the idea of going down to the Vegas strip to go to the pinball museum when I ALREADY feel bad sounds like a recipe for a horrible time for everyone involved. He and his friends deserve better than that.
Days like this make me wonder about my future, and what kind of social life I hope to have. I’ve decided that I’m just going to have to stop thinking so hard when I’m having a relapse. This shit doesn’t last forever. I always have the hardest time remembering that. Still, I haven’t been able to go out with anyone at night for over a year now, give or take once or twice… so I work around it. I have people over to my place.
But it hit me, full force one day, just how disabled I am.
I’m not kinda disabled. I’m WAY disabled — and it’s not the MS. It’s the Seizure Disorder WITH the MS. I won’t ever drive again. I won’t ever water-ski or ride a roller coaster. I won’t ever get to go scuba-diving or hang-gliding. I won’t ever work as a chef or be accepted in a culinary academy to take courses for liability reasons. There are places I will never go and things that I will never be able to see – movie and tour openings and concerts that I’ll miss because of photosensitivity – Hell, I still can’t even use public transportation because I can’t walk a full half mile in 100+ degree weather.
With limitations like these, and with a 9.5% unemployment rate, how on earth am I supposed to land a gig between now and Nov. 20th, when I find out if I am an attorney? And if I am, how am I supposed to be a good *entertainment* attorney when I can’t attend red-carpet events?
I’m being forced to rework my whole life again.
But that’s the way it goes.
You deal with it the best way you can. Same game. New rules. New plan of action.
Same as it ever was. Now’s just a time to think, to plan both for victory and for defeat.
And while I’m still in pain —