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content by Nicole Willson.
Copyright 2000. No stealing.
9/14 -- The First Day of the Rest of My Life.
As life-defining moments go, this one felt almost anticlimactic.
I'd been preparing for battle all day. Bill and I sat in the examination room waiting for the neurologist and in my head I kept repeating "No, doctor, I'm not getting another spinal tap. It was too upsetting. Too painful. I can't miss five more days of work if Fair Oaks Inova screws it up again. It's just not worth it." I wasn't going to back down or cop out this time, dammit.
And then he came in, sat down, and with very little preamble said "The MRIs on your brain are now showing some lesions. "
Talk about taking the wind out of my sails. All I could say was "Really?"
"Yes. There's no need to do another lumbar puncture. With the lesions, and the symptoms you've had, and the protein strands in your spinal fluid from the last lumbar puncture, I don't see any need for more investigation. This is MS."
And of course, I already knew that. I've known it for months. But just like that, it became official. Real. He made it final by scribbling "M.S." on the forms I took to the receptionist after the visit.
I didn't cry. In some bizarre way, I felt a little relieved. For months I've been lurking in MS-related newsgroups and forums, reading along as poster after poster shared stories of going through two, three, five, ten years of testing and scary symptoms before they were finally diagnosed. Dear God, I'd think. These last few months have almost driven me out of my mind -- I can't face this "We think it's MS but we don't know, so here, let's jab a giant fucking needle in your spine" treadmill for another year. Or two.
(And yes, I felt relieved that I wasn't going to have to have another spinal tap, so much so that Bill and I actually looked at each other and laughed when the doctor said there was no need for another one. MS? I can handle that, but another spinal tap? No way.)
And even if having MS sucks, I'm grateful the problem wasn't something worse. The inner voice that loves to torture me would occasionally pipe up with "Ha -- you've got yourself resigned to MS, do you? Maybe it's not MS. Maybe that's why they can't diagnose it. What if it's a brain tumor? What if it's Lou Gehrig's disease? That'd sure be a pisser, huh?"
Next comes the treatment. He's starting me on Copaxone, something I'm going to have to inject into my thigh every day. (You can probably anticipate at least one more good fainting story before I get the hang of that one, I'm betting.) The nurse-practitioner, a warm motherly woman named Fran, assured me that the needles are too thin to cause much pain.
The neurologist turned me over to Fran pretty quickly after delivering his diagnosis. He looks so young that I'm guessing he hasn't had to deliver this kind of news to too many people, whereas Fran's obviously been a professional hand-holder and tear-drier for years and years. He sent her in to tend to me back in March when I cried over having to get the IV steroid treatment.
Fran handed me my very own MS care package -- a blue box containing a video and several booklets about MS and the joy and wonders of Copaxone. She looked right into my eyes and said "What I'd do if I were you would be to go home and just put this away for a couple of days. Don't start reading up on it and watching the tape until your mind is ready to handle it. If it takes a few days, that's okay."
That's as close as I came to breaking down in the office. I thought for sure that I was ready to handle everything -- until she said that. I really believed I'd gotten most of my anguish and fear and denial out back in February and March, when I first read up on the close connection between optic neuritis and MS and felt like someone had just kicked the chair out from under me. When I read up on the symptoms of MS for the first time and realized that the numbness in my right hand probably wasn't from carpal tunnel syndrome. When I couldn't banish an image of poor, debilitated Richard Pryor from my mind. When I couldn't bring myself to tell Mom what optic neuritis might really signify for me.
Once I got through all that and came to terms with the idea that I probably had MS, I thought I'd be able to take an actual diagnosis on the chin. Then today Fran said "Wait until your mind can handle it," and I realized I still had some accepting left to do. She started talking about calling the company to get the Copaxone, making delivery arrangements for the medicine, and dealing with my insurance company, and I thought "All this for me? But I don't even feel sick. I just want to go home."
At home, Mom called and I broke the news to her. This diagnosis couldn't possibly have come at a worse time -- Mom's been up in Pittsburgh all week, helping an elderly aunt and uncle of mine tend to my cousin, who had a stroke on Sunday. (My cousin's doing much better, after one alarming downturn on Monday.) I thought about not telling Mom, about sitting on the news until she gets home. But she knew I had the appointment today and I couldn't come up with a plausible lie about what else might have transpired. She sounded incredibly weary and depressed when I told her. This wasn't any more of a shock to her than it was to me, but I think she's been hammered with about as much as she can take this week.
(The natural order of things in our family has been royally fucked up lately. The children are having strokes and getting ill and the older parents are the caretakers again, decades after they should have been finished with this role. It's just crazy.)
The box is still sitting on the kitchen table. I leafed through one of the booklets, which started off as a "So You've Got MS" guide and became a not-so-thinly-veiled advertisement for Copaxone. When the book went into depth about all the reasons why my insurance might decline to cover the Copaxone, I lost all interest in reading further. Fran was right -- I can mull over my scary symptoms endlessly and ponder what type of MS I have without much anguish, but imagining what the actual treatments might entail is a little more than my brain wants to deal with right now. My fantasies of being a tough broad and taking the diagnosis in stride didn't extend much beyond getting the bad news in the doctor's office. They cerrtainly didn't extend to classes on how to inject drugs into my leg every day for the rest of my life. Or possible battles with the insurance company.
But even after all that, I still feel optimistic. We caught it early. I can start treatment. Treating it early helps to slow its progress. The treatments seem to be improving every year. I'm still seeing the specialist in October. Right now I'm feeling a little poleaxed, but I'm going to get back that angry, fighting spirit. I'll go back to work tomorrow and settle back into the daily routine. This illness isn't going to be great, but I'm determined to keep it bearable.
One year ago: Bill and I went to Baltimore to apply for our marriage license. I discovered Belcher soda.