Thursday, July 13, 2006

The Power of One Little Email

I got an email from my husband today that made me cry. It shouldn’t have; there was nothing sad about it. Maybe listening to the rain has made me melancholy. Or maybe it just took me by surprise. Or maybe the Wellbutrin hasn’t kicked in yet; it’s only been 3 days. But still, I felt a little silly sitting on my couch, blubbering into a Kleenex.

See, he told me that he works with a guy whose wife has MS, and they talked for a long time this morning. They exchanged numbers, and he invited us to their house, which he designed and had built for her. The main living area is on one level, the doors are wider, there’s a walk-in shower and other things that will make life easier for her.

That’s all good stuff, right? I mean, it’s great that Al has someone to talk to and that we can talk to another couple that is going through this stuff, and it’s sweet that he built that house for her. So, why am I crying?

Because it’s another thing forcing me to accept that I have this disease. Because I don’t want to get to a point that I have to have a house built because I can’t go up the stairs easily any more. Or I can’t step over the tub to take a shower. Or I can’t get a wheelchair through the door.

My doctor has told me that there’s a good chance I may never have debilitating symptoms, and that the medicine will slow the progress of the disease by about 30 or 40 percent and that I might have a mild case. I do really well on all my neurological exams, better than most. And I hold on to all of that, and I tell others that when they need comforting when they find out about my diagnosis. But it’s still a degenerative disease without a cure, and we just don’t know for sure what’s going to happen. So, meeting people who are having to deal with things that I might have to can be as upsetting as it is comforting. And I have to wonder if I should be preparing for something worse? Should Al be preparing himself?

There are a lot of diseases out there, and there are a lot of people dealing with them day-by-day because that’s the only way to do it. I have a good friend with Type I Diabetes and one with Acute Porphyria, and we’ve all bonded in a whole new way. They’ve been there and understand my reluctance to accept this diagnosis, and the frustrations and fears that come with that. But there’s only so much other people can do. At some point, I have to “step up to the bat.” I thought I had, but these little reminders are coming at me from all different directions. So, I guess I’ll cry a little, feel sorry for myself a little, ramble on my blog a little, then I’ll get up and make a cup of tea and start planning dinner. Just like any other day.

Note: Al got home and told me about his conversation. He couldn’t wait to tell me that this lady had been in a wheelchair, her MS was so bad. But with Avonex (what I take) she’s doing great and is even riding a bicycle. So, there’s always hope and good news.


F&W said...

Wow. Talk about ending a revealing, emotionally-charged post on a high note! (pun intended...note...get it?)

I like how you tell us about all of this, lay it all out on the line, but you're still able to put in into perspective. It could be worse. It could be better. It just is.

Thanks for sharing, Kell.

saz said...

Kell - I think it's a very good thing to sit down and have a cry and feel bad about this. If you let yourself feel all the emotion of this disease you can then try and move forward after. I don't know what it's like to be in your shoes but I do admire the way you handle it and are able to share your story. I'm hoping you will not get any worse. I've known a couple of women with this who did not go past a certain point in the progression of the disease and I'm wishing this for you too.

Susan said...


I can't even begin to imagine the emotions and fears that you are having to deal with. I think that it's perfectly OK to have a bit of a cry every once in a while. (heck, I do that without even having a reason)

I'm glad to hear of the good news and hope the meds bring.

jd said...

It takes a lot of courage to share what you are going through. Thanks for being so open. I pray that things go well.

Lisa said...

Kell, thanks so much for sharing this. I'll be seeing my mom's best friend, who has MS, in Missouri at the end of August. She inspires me with her strength, too, and she lives a really good life.

Your honesty about your feelings goes straight to my heart. You have all the courage you need to handle this and it sounds as if you have a really nice husband to hold your hand during the moments when you doubt that. Please know you have a fan club here that will cheer you on, too!