Wednesday, January 21, 2009

A "good" case of MS

This is a post I wrote for our Team HP blog that I thought I'd post here too.


I'm riding for my mom. I know you hear that a lot when you ride Bike MS. "I'm riding for my brother..." "I'm riding for my dad..." Knowing someone with MS is how we get the inspiration to train as long as we do, to beg for donations from as many people as we do, and ultimately, to actually exert ourselves for two days straight, making ourselves sore and miserable for days afterward.

Sometimes, if you're unlucky enough to have multiple sclerosis but blessed enough to still have the ability to ride, you can say "I'm riding for myself." My mom is one of the ones who rides for herself. This is because the medicine she's been on for the last 14 years (you know, the medicine that came out of the research that costs lots of money) has been effective for her. According to her last MRI, her MS had not progressed in eight years. Eight years!

So my mom can walk. My mom can run. My mom can do taekwondo (she's a black belt). And, with the help of the battery-operated little motor on her bike for the hard hills, my mom can ride the MS150. All of us realize what a big deal that is for somebody with MS, and we try very hard not to take that for granted.

So what does having this disease mean for her? While I can't speak for exactly how she's feeling all the time, I can tell you what I've seen as I've grown up with a parent with MS.

I've seen the leg that she cannot always control spasm over and over, many times waking and keeping her up at night.

I've seen her struggle to lift things that should be easy for her, and I've seen her need help with things that others do with ease.

I've literally had to drag her through the streets of Dallas as she tried to finish the last bit of the Susan G. Kolmen 5K when she just ran out of energy.

I've watched her panic (so many more times than I can count) as she all-of-the-sudden realized that she had to go to the bathroom and wasn't sure if she would have time to get there. (Because the MS causes the nerve signals to the bladder and the muscles surrounding the opening to the bladder to be blocked or delayed, she doesn't always know when she has to go until it's almost too late, and at that point she may or may not have the muscle control to keep from wetting her pants.) She's embarrassed about mortified by that thought.

When my dad was out of town, I've watched her sit quietly in the kitchen for many, many minutes, holding a needle over a spot on her leg, trying to get up the nerve to give herself the shot she needed that night. It's hard for her every single time.

I've seen her fall when her legs were suddenly tingly or asleep when they shouldn't have been.

I've seen the bruises on her arms, legs, stomach, and buttocks (okay, so I didn't see the ones on her bum, but I assume they're there too) from the betaseron shots she has to get every other night. I've seen her choose shirts with sleeves over sleeveless shirts during the summer because she's embarrassed about the way her arms look with the bruises.

I've seen her exhausted after a normal day of work (for anyone else), and sometimes I've seen signs of depression, all of these symptoms of the MS.

But most of all, I've seen her care for others more than herself. I've seen her downplay her own multiple sclerosis because she knows that it could be so much worse for her. I've seen her carry herself with dignity as this wrecking ball of a disease tries to steal it from her.

I ride for my mom. Who do you ride for?