Monthly Archives: September 2009

Okay, that’s pretty awesome.

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So some of you know, others of you may not know, that I graduated in May of 2008 with my Juris Doctor from Southwestern Law School. (Kind of a big deal for me, since I was diagnosed while in law school.)

Anyway, Annie, the incredibly sweet and awesome disabilities coordinator there emailed me last week and wanted to find out if I was willing to participate in Diversity Week, and share my story with current students at Southwestern.

Who me? Share my stories with people?!! NOOOO. (hee.)

So here’s what I wrote for my alma mater.

—–
During the second semester of my second year of law school at Southwestern, I started feeling *awful*. Eventually, my physical condition could not be ignored. I wondered what all the numbness and tingling in my left side and sudden bouts of what seemed like narcolepsy were all about… but I kept on studying and going about my school work as hard as ever. What I didn’t realize was that the physical problems I was experiencing were tied to the problems I was having memorizing things, and the sudden cognitive fogs that came over me weren’t caused by the stress of writing that Advanced Copyright Seminar paper or getting my reading done before class, they were caused by MS.

Multiple Sclerosis (MS) is a disease where small holes (lesions) form in your nervous system – most prominently in your brain or spinal cord. It’s a disease that’s different for every person who has it — and for me, it was presenting itself in the ways listed above, but also, slowly, in the form of a seizure disorder that would later stop me from taking the bar exam on the first-go-round and land me in the hospital for 12 full days, not to mention stop me from driving or even being able to read for several months.

I received my diagnosis on the third day of my externship at Rhino Entertainment. What was originally supposed to be a full-time, full-summer externship had to be cut shorter, as I was immediately put in the hospital for several days, but with the understanding of my boss at Rhino and Professor Lind, I returned to work and finished the externship with high marks because I didn’t quit, and I was absolutely determined to do the job to the best of my ability and to completion. That’s what the next two years of my life were all about: finishing law school and taking the bar exam while doing my absolute best with the hand I’d been dealt.

Taking on that third year of law school was tough. I couldn’t get to more than half of my classes, but I read every page of every assignment (okay, ALMOST.), attended every class I could, and kept in good communication with all of my professors. In fact, I believe that I have a better understanding of the law and a better relationship with those professors BECAUSE of my disability. MS forced me to focus harder than I would have otherwise, and it forced me to prep for the bar exam twice before I got to take it once!

Ultimately, the lesson to take away is this: No matter what difficulty you’re having, physical or otherwise, persistence, optimism, and using the resources you already have WILL pay off. You’ll never regret asking about something you want to know or getting to know someone you respect, whether it’s in regards to the law or in regards to life.
—–

I know it’s probably kind of arrogant of me, but this opportunity really excited me. I’m hoping Annie calls me next year to be one of the speakers. There’s something about being disabled, but not defeated that somehow seems to make me “special” in some people’s eyes. I’m not really sure what that’s all about, but I’m more than okay with it. It’s like I WANT to talk about it. It makes me feel BETTER to talk about it. It reminds me that I’m just like everyone else — that this could happen to ANYONE, and that I could be really making a difference just right then. 🙂

Either that or I’m being a narcissist. Since I tend toward the low-self esteem end of the spectrum usually, I’m ok with having a positive narcissistic moment here and there, though. 🙂 I’ll take my happy where I can get it! 🙂

That being said – happiness has abounded for me recently. I had a great past few days in regards to health, and I hope the trend continues. I think the awfulness that was going on all summer was a relapse that my body is FINALLY finished with, and though it’s gonna take 8 months to get off of the Lamictal, my mood is SO much improved that I can’t help but be bubbly.

I hope you all are doing as well! Good health everybody! 🙂

All I Needed to Know For Rosh Hashana, I learned from Master Oogway.

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Now, I know I’ve told people that Kung Fu Panda is my favorite movie this year — but I don’t know if I’ve told you all why. Every time I watch it, I get something more out of it… but most importantly, I hear lessons I need to hear over and over again.

Tonight, on Rosh Hashanah, I felt compelled to watch 2 scenes from the film — both at the Peach Tree of Heavenly Wisdom… and both with Master Oogway.

Scene 1

Vegas, baby! Vegas!

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Just got back from a great time in Vegas with family and friends. Who would have thought a girl with MS and a seizure disorder would be able to hang out on the strip with friends for 3 days straight?

Couldn’t have done it without Adam and without the aid of loads of meds, but I had SO much fun!

Apparently, now I can handle karaoke no problem, which is FANTASTIC because it means I can go out and have a social life at night again! (You have NO idea how much I’ve missed that!) I also know better than to look directly into a sea of slot machines… (Yeah, you don’t look directly at Medusa’s eyes either. Trust me on both of these things.)

Funny thing – I can walk through a casino floor no problem now, but I still can’t ride down the strip without seizures from photo-sensitivity thanks to some of the plasma billboards up there. THANKS, MANDALAY BAY! I was teasing about how they should “have a law about that.” to Adam (always a joke b/c I loathe extra laws), but since there are so many epileptics on the road and so many people with latent seizure disorders, he actually thought it was something that should be on the books. Considering he had to catch me umpteen times, I have no idea WHY he’d have that opinion… 🙂

Still, an evening on Fremont St. let me know that I am well enough to stop being scared. I’ve spent too many evenings at home for fear of seizing in public. Now I know I’m going to have seizures. I just need to be with friends who I can hug! That way no one notices them. 🙂

Nothin like a little problem solving.

That old familiar feeling.

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Despair.

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 —
now sleep.