First off, this is a personal story I've decided to share. It doesn't have anything to do with politics, I just thought that, of all the places I can think of, this community is the one place I could share this. If you're not interested in a non-political diary, this isn't for you. For those of you that care, follow me below the squiggle...
My wife, my soulmate, the love of my life, has Multiple Sclerosis.
I knew this when I met her, two years ago this February. We met online, and she said she wanted to talk to me because of, among other things, my love of politics and the Beatles. I knew, almost instantly, that I was in love, and she felt the same. It was one of those things you don't expect to happen at 33 years of age. I was going through a divorce from my first wife, I was depressed and lonely and sad, and she was a brilliant light in my darkness.
I moved to Seattle three months later to be with her, finally found a job, and settled into her little apartment on the beach. We found out a few months later that she was pregnant, and we now have a beautiful, healthy baby boy.
I, like many people, didn't know anything about MS when we met. I mean, I'd heard of it, and I knew it was a pretty terrible disease, but I had no idea what it entailed. I've learned, though, through books and websites and just living with her as she lived with it.
For those of you who don't know, MS is a degenerative neurological disease. It basically means that the immune system attacks the lining of the nerves in the brain, seeing them as an enemy. The way she explained it to me, and it's one of the best ways I've ever heard it explained, is a kind of reverse-AIDS. Instead of the immune system breaking down, allowing diseases to infiltrate and, eventually, kill the sufferer, the MS patients immune system is basically in overdrive. She has to be careful not to take any immune-system boosters, which sucks when she has a cold or the flu.
If you've ever watched The West Wing, you know that Martin Sheen's character, Jed Bartlett, had MS. My wife has the same type, relapsing-remitting MS, which means that she has flare-ups when it gets much, much worse, and she has to go to the hospital for a course of steroids. She's also on Betaseron, which is great for the MS but makes her feel like she's having a heart attack.
I'm not writing this to get sympathy, or to make anyone uncomfortable. I just want people to know about my amazing, beautiful wife. She's one of the most liberal, caring, amazing people I've ever met, and I feel that she deserves better. There are more medicines and treatments coming out all the time. For example, there's a treatment in Europe right now that mimics the hormones from pregnancy. For some reason, when a woman with MS gets pregnant, the MS almost completely disappears, possibly so that the hyperactive immune system won't attack the fetus. It's very exciting, and I personally thank the president for dropping the ban on stem cell research. Okay, I lied, apparently there is a little politics in here.
The only way that my was finally diagnosed with MS was during an appointment with her eye doctor. She'd been having many, many problems before that, up to and including falling in the bathroom and breaking her leg. One of the first signs of MS is a loss of balance, and, in 55% of MS sufferers, a disease called optic neuritis that impairs vision. Her doctor at the time kept telling her there was nothing wrong with her - for almost two years. My wife became a hypochondriac, thinking that these actual, honest symptoms she was experiencing were all in her head. When the eye doctor finally realized what was going on, he set up a conference with her doctor and, apparently, ripped her a new one. For which I will always be thankful.
That was in 2006. She's lived with this for five, almost six years, and she's learned to deal with it. She's in constant pain. She doesn't like to tell me, thinking that it's her problem alone. I keep explaining to her that there is no more I, only we. I understand the way she feels, though - even when you love someone more than anything in the world, it's tough to stop being independent.
I know that at some point, she may lose her mobility, and have to be confined to a wheelchair. I've told her that if/when that happens, I'll push her around, pimp out her chair and pop wheelies down the street.
She's worried about taking care of our son. She's afraid that she won't live to see him grow up, see him fall in love and graduate high school. I have to tell her almost every day that she's worrying for nothing - I have faith that they'll find a cure. I have to - the alternative is too horrible to think about.
She's my love, my whole world - she's not MS, she's just been dealt a crappy hand. And sometimes, I can't help but be pissed off about that.
Tue Nov 08, 2011 at 11:13 AM PT: Wow, thank you all so much - first time on the rec list, and I got rescued. My wife and I both thank you all, for your kind words and your heartfelt emotions.