Who’s There?

Actually it turns out I could ask for a whooole helluva lot more! I guess there’s no easy way to introduce it so wouldn’t you know I’m struggling to get into the groove of graduate school when I get diagnosed with a chronic illness.

That’ll be Multiple Sclerosis for a thousand please*. I’d been having some weakness in my hand, some balance issues, long story short, yada yada, MRI’s, spinal taps, blood tests, lots of requests to walk in a straight line, there are 18 lesions on my brain, one on my lower spine and survey says its remitting, relapsing MS. December 12, 2006, 11:30am – that’s when my neurologist called me with his diagnosis, 30 minutes before my first class which I still went to. In fact I still went to my classes that day, emailed the folks that I’d discuss it with them later (and wouldn’t you know my mother somehow still managed to mention my being a bad daughter who if I called enough would have been able to handle “this” better? I swear she is gunning for that Ultimate Jewish Mother award). It’s better if I just copy what I’ve written to myself ever since all of this (also I’m just being lazy and now I have a disease to excuse it):

Once I learned I had Multiple Sclerosis I didn’t feel much of anything. In fact, the doctor called me on a Tuesday morning and I still had classes so I went. I emailed my parents and told them I’d call them later. After classes I went to get a pair of jeans at The Gap. My dad comforted my ear off with consolation but I mostly tuned him out as I fingered sweaters and jeans. I finally said “Mhm, mhm, I know, yes, things will be fine, love you, too” and hung up. I wondered why I didn’t seem to care. I have MS for God’s sake, I’ve known all of 10 minutes and all I want to do is be left alone with my Gap and my cigs. Finally I had my items at the register and while waiting I daydreamed about maybe a bubble bath and wine in the evening. “Do you have another card, miss?” I looked up flabbergasted. I’d just made a huge payment on my AmEx, no way was it declined. But sure enough, the clerk tried it again and again I was humiliated. I left the store with $200 off of my bank account – for now I just had to buy the damn clothes lest I walk out of there empty-handed and embarrassed – and raced home to go online. After learning of my new reduced credit because of late payments I slammed the phone down as hard as a Razr flip phone allows. I whimpered some…then I just lost it. I threw the damned phone, I shoved my computer away (but not too hard, I hadn’t totally lost my mind), I cursed and pulled my hair. Everything seemed to fall apart. But I still wasn’t thinking about the MS, I was thinking about my credit, about money, about ever being able to buy a home. To me, this credit card mess was the end of the world. And to me, credit was now the end all/be all of my life. Of course, I know now why I flipped out. I understand that the credit thing was just one more final thing I’d lost control of after my own body. And because the knowledge of this disease was just too much to bear, I chose to focus on my credit score instead.

And that’s kind of how it was while I struggled to finish classes, get extensions, deal with insurance, pick a doctor I’d be dealing with the rest of my life, start treatments, deal with side effects, figure out what’s a side effect and what’s a possible new symptom, manage the side effects with more medication, manage the management, learn that theres an entire population of people who exist to help you do all of this and that there’s an entire population of people who exist to make it harder.

My family, my friends, my department have been nothing short of amazing. The only thing that perhaps amazes me more than how fortunate I am to have such support and access to care is the fact that if not for my being employed (remember as a doctoral student, I’m essentially an employee of Harvard) I would have no insurance and at this very moment would be walking the streets with an autoimmune neurological disease in need of immediate treatment. And our president says folks under thirty don’t need health insurance….well I’m 24, Dubya, what ya got on that, son?!

Of course, the best thing to do is laugh twice as much as I cry so that is what I intend to keep doing. Thus, below are a few Multiple Sclerosis highlights. Enjoy:

From dad:
“hi baby…just wanted to see how you’re doing.”
me: “…hey dad, im the same as I was when you called two hours ago.”
dad: “I know but just checking.”
long pause
me: “….I’ve still got MS.”
“..that’s not funny, Brown Baby.”
“..well, if you’re calling to check if it went away, it’s damn funny to me.”

me: “I’m just now realizing that I’m a person with a disability and that’s so weird to me.”
dad: “..shit, you’re a black woman in America, you’ve had a disability all your life!”

My father also thinks my being in NYC caused me to “get” the disease.

First thing to avoid when you have MS – stress: I love it: “You have MS, you may go blind or become paralyzed in two days or twenty years. Now Relaaaaaaaaaaax.”

And you never realize how insanely silly you sound when in awkward moments until you’re on the receiving end e.g. reactions from people who found out but aren’t so close to me:
after the obligatory furrowed brow and nod, “You know my cousin’s mother’s neighbor’s gardener’s sister’s husband’s parole officer thought he had MS…yeah but turned out to be a cold.” – I’m not making that up.

But my absolute favorite:
me: “I’m sorry I forgot that payment/letter/paper/phone call/message/number/item/library book/bill/birthday/holiday/gift/date/meeting/anything that involves my being at all responsible to you, but I have lesions on my brain. It’s MS.” followed by a long pause then by hmms and haws of guilty acquiescence.

For the Tyrone Biggums fans:
A possible side effect of my anti-fatigue medication is, wait for it, lazy eye, itchiness, and behaviors of addiction such as hyper-activity, cravings, and withdrawal.

And while I tend to be more on the agnostic side and not give a good goddamn what people do, there was a time following my diagnosis when if I heard one more person say he/she was praying for me, I thought I might politely demur with “Aw thanks, but I don’t think my divine leader of the dark world, Satan, would like that.” But it was and remains my wavering anger behind that and nothing more. And of course the alternative of no one giving a shit is much worse.

So I finally achieve one of my many goals in life that involve the better health of my brain and turns out my brain’s not doing so hot. Could have been worse right?…I tend to hate that line of thinking because even if it could have been worse, whatever has happened still sucks ass but I guess in this instance I’m going to have to run with it.

Part three is tomorrow….if not, you know what to blame.

*Actually that’d be $1700 please which is what a month’s supply for my treatment costs. Oh and my drug plan? $1875 a semester…yeah, figure it out, because I haven’t.