The first neurologist I ever saw was a 2nd-year resident who looked like a high school kid. I’ve blogged about him before; he’s the one who told me he thought I might have ALS after we’d known each other for 20 minutes. He’s the one who told me I might want to reconsider trying for a second child. I wouldn’t exactly call him a bad guy, but I don’t have a lot of fond memories from our time together.
One of the things he told me early on was that everything was going to get harder for me. Walking, stair climbing, driving. I was most concerned about the driving, and I pressed him on it. He assured me that my losses would be gradual, that it would never come down to me getting behind the wheel and being suddenly, surprisingly unable to operate the car safely. Don’t worry about that, he told me.
It’s funny, because it was likely the only reassuring thing he’d ever said to me, and it turned out to be a bunch of crap.
One afternoon, Scarlett and I met my sister and her new baby at a playground a few miles from our house. It was a chilly day in San Francisco, the temperature dropping as evening approached, and we only stayed for about an hour. But it was long enough for my body to cool down considerably, and that is bad news for ALS.
We said our goodbyes and parted ways at a corner, and I continued to my car, which was half a block down hill. I didn’t have a stroller, just a two-year-old by the hand, and suddenly my legs wouldn’t cooperate. They were tight, then trembly, and I felt like one of the kids I had just seen at the playground, working on mastering the very basic skill of walking.
We barely made it across the street, where I grabbed for the nearest thing I could reach, the post of a stop sign. Then I stood there, quaking with uncertainty, while Scarlett tugged at me and I clung to her with an intensity that might have bordered on corporal punishment.
I could see the car, down the street. We were three steps from the side of a building, and I calculated that it was my best bet of making it down the hill. I lurched for the wall, probably only remaining upright because I was relying on the stabilizing mechanisms of a toddler. Then I shuffled along, holding the wall, not daring to think of what I would do once we got to the car. I was terrified of falling, of letting her go.
We made it, very slowly, and I was relieved, but shaky as I turned the key in the ignition. Then, when we were nearly home, driving down a busy street, a car stopped ahead of me. I moved my foot to the brake pedal, or at least I tried to, but my leg wouldn’t move. In the split second before I caused an accident, I was able to grab my leg with my hand and shove it onto the brake. The car stopped, and we somehow made it 4 more blocks home without incident.
Now it’s been two years since I’ve driven a car. It’s just one more thing I’ve given up, along with a deep-seated belief that doctors always know what they’re talking about.
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Sarah, I so remember that experience. Teaching middle school math. Wearing heels and a skirt. Suddenly my left leg is trembling, unsteady, and as I walk outside on my way to the office and my ankle collapses and can’t catch myself. Down I went, to the wondering eyes of a twelve year old boy. I couldn’t get up, either. I calmly sat there and asked him to have my neighboring teacher to call the office. That was the beginning of my medical journey. After six months of being treated for Parkinson’s disease, and two doctors later, I knew I had ALS. By then, I was using a walker. And had had to give up driving. Life can change in a day. Thank you for sharing your journey. I have been sharing my journey as well. katycarter.blogspot.com
This blog made me swallow hard and fight back tears. That feeling of being alone with no one to help you and your body betraying you. My dad had a similar rainy day trying to visit my kids on grandparents day last year. Missed the whole thing almost attempting to walk to the school. I wish I’d have been there for him in that moment.
Hello Sarah,
I sure enjoy reading your stories. Your are such an inspiration. Your writing is important to all of us, we are not alone in this fight. Let s keep our hopes up, we are all pushing for accelerated GM 604. Something positive will come through. My best to you .
Sarah, I stumbled across your blog somehow (maybe the NYT?) because my friend’s mother was going through ALS. I have kept coming back because your writing is so good, the blog is so informative for me, and you have such a compelling voice. I wish we’d “met” under other circumstances and you did not have ALS. But thank you so much for writing this blog.
Thank you, Sarah!