Wednesday, March 30, 2016
How It All Began
I was a little disappointed at my neurologist appointment last December, when my dr failed to congratulate me on my 24th MS anniversary. Of course, she was probably still in school then so I can see why it didn't make a mark. I'm sure the neurologist who did interpret my first MRI is retired, and or dead by now. So I guess I'll just have to buy my own anniversary gift. But this way I know I'll like it and it will definitely fit. So I guess it's a win. Or maybe Dr S is waiting and has something extra special planned for my 25th, this December!
It's not like its a huge cause celebre anyway. But I'd never turn down some extra half and half (hint, hint).
In fact, the original event started out kind of lame. Pun definitely intended.
I'd been having weird feelings in my legs. They had were heavy and stiff for weeks. Like they had been encased in lead. I remember going to a friend's birthday party and we were playing a relay game and I felt like I was walking like Frankenstein. It was dark out so no one said anything. I enjoyed the fancy Japanese meal, chopped and cooked in front us, like all the other party goers. I just didn't contribute to a win for the relay race. Later my new gait caught my sister off guard and could not stop laughing. So I could have been a good party add-on. If it had been lighter. Oh well. their loss.
After a few weeks, I think, it didn't go away so my mom made an appointment with our family Dr. He was our doctor for as long as I can remember and he was always very comforting for whatever you were in for. Whether it was ring worm or the fact you couldn't feel your legs. So of course, he was very professional and reserved as he did the office exam.
I didn't feel too worried. Just mostly annoyed.
My mom had been reading up on all the potential contenders to cause such symptoms as I was experiencing: Guillon-Barre was the horse we were rooting for. Or possibly some strange tropical foot worm I had picked up in Hawaii the previous month and it could all be fixed with an antibiotic. Even an enema would have been fine, if it would make it go away.
I can only imagine the ferocity with which a parent might investigate potential life-long mates for your children when you are afraid it might be that no good guy with the earring and no job she might get shackled with. So we searched high and low trying desperately to avoid what was the most likely culprit. MS.
My mother's sister, my Aunt Moira, had spent some of her remaining weeks at my parents house, but I only remembered a little of her. Her hospital bed was set up in the Blue Room. Which was actually the room I was born in and was later my own for several years. I remembered her eye patch and her slurred speech. And that she had been an opera singer. (Oh, If I could only have inherited her voice instead. Happy Birthday's here would not be such a travesty.) But I didn't. I remember playing on the big cannon at my Grandparent's house after her funeral.
She was 27 when she came to stay with us. She'd only been diagnosed 9 or so years before that, but my mom is pretty sure she had symptoms long before then. But it was not so easily diagnosed back then. And really all they could do was give you steroids. She was in and out of the hospital for awhile. She'd bounce back and they'd send her home. Then she'd get worse and go back in, probably for another round of steroids. And finally she asked to just stay home and eat Haagen-Dazs coffee ice cream. ( Apparently, we also have love of good treats in common too.) She didn't' want to die in the hospital.
She rebounded one last time after which she went home to my Grandmother's. Where, finally, with the aid of some morphine, she went to her eternal home. I was curious to know just how she did go, and though I'm sure it was probably not too far anyway, I don't think hastening someone's death is ever anyone's place ,or something you can get over. So just don't. There is always the next morning and opportunities you couldn't dream of in your current state but you are so glad you got to see that smile, or hear that word, or hold their hand. And you are glad you took every opportunity of embracing life while you could. Even if its hard. Because life is really hard.
So we went to the appointment and gave the doctor our list of choices. And in is very calm way, he soothed us and said we'd need to wait for an MRI before we could discuss a diagnosis. I remember not being too freaked out, or nervous. Just kind of matter of fact and 'woah, my legs are really funky'. But I still wasn't really worried. As the doctor escorted us back to the waiting room I heard a mention of MS. I could tell my mom was starting to lose it. Which meant of course I was going to too.
"Mom" I said "don't cry. You're going to make me cry."
So obviously we both cried.
But still, there was some hope. The MRI was scheduled for the next day. At some ungodly hour. Like 9 am. Which is anathema maranatha in my family of night owls. I got the instructions of no metal or make-up (as if I 'd get up early to apply any, if I did even wear it, which I didn't). I slept to the last minute then quickly pulled on my stretchy pants after I rolled out of bed and into the car.
But in that one day I had time to think about the possibilities and things were starting to "feel" real to me and the what ifs? and now whats? came pouring down.
I'd never really set my future plans in stone. I was 13. There were so many options it was difficult to choose just one. After I read Madame Curie, I thought "great, I"ll be a physicist!" But being not gifted in mathy type things brought me back to reality. I had always felt a strong pull to Mother Theresa and her work. I had sent her some money and a picture of me in my First Communion dress. She sent me back a letter typed out on the back of a prayer card and the picture, which she had signed. But I might like to have my own kids. Would I be able to? Would I ever get married? Would Prince Charming be willing to stop our trusty steed just at that shrubbery up yonder so I could go pee. Again? Would he get annoyed and say no? Would I be able to ask? (Spoiler, he hasn't and wouldn't.) So its all good and way better than the fairy tales I would still lose myself in. Like the one about the Russian-Jewish convert. Which still cracks me up because Shane can speak Russian, is a convert, and I think has some Jewish blood on his German side. And obviously I could have kids. Unless the six living with us are just squatters. But that's ok. I'll take them any day.
So many thoughts crowded through my brain that morning. The main one being.
"Man I'm tired. Why couldn't we have gotten an afternoon appointment?"
I have a knack for zeroing in on the important aspects in a situation. Sleep and what's for dinner.
My dad met us and we had lunch. Or maybe it was after the neurologist appointment and the reading of the MRI. I'm not sure. I hope we went to Dick's, but I think not. Which in retrospect was probably a good thing. Don't want to taint a Dick's Deluxe with an unpleasant memory.
We met Dr. Mesher for the first time. He did the typical neurological function exam. And then we got to the MRI. And there were the bright hazy spots on the brain.And yes. It was MS. I think I would have been shocked if it hadn't been. But not unpleasantly. And then came all the questions no one can answer but you ask anyway. Pretty much at all the appointments for the rest of your life. And the answers are all the same too. We don't know. I can't say. We'll just have to wait and see. It's different for everyone.
Like I said, the only thing to be offered back then was a round of steroids. Or maybe that wasn't offered either, as I was so young. I just remember trying desperately to get him to give me a hint of what to expect and when. Which he couldn't. Then my melodramatic self kicked in.
Would being at home be a risk to any of my siblings?
I'm still laughing at that one. Yeah, I'm really not sure where that come from. Maybe I was feeling cut off and thought making it real would....um I'm not really sure what it would do. Maybe I was trying to get out of my kitchen job next week. Or maybe it would be easier to cry for some other reason, like leaving my family, than cry over the crap hand I'd just been dealt. Because it seemed silly to cry over what your cards might be in the future. But you knew the possibilities from your draw pile and they all sucked.
The doctor kept his cool and didn't look at me like I was a freak and explained,
No, you don't need to be sent to a desert island. Yes, you can have kids. No, there aren't any drugs available yet.
Cell phones were not so ubiquitous then, so we waited until we got home to share the news. I think I cried some more. Then took a nap. Then we ordered pizza. And some time later another aunt came over with a big pink box of King Donuts. Maybe things weren't so bad.