Tag Archives: living with als

Dear Husband

I remember the day I met you, suddenly standing in the entrance to my office, wearing a suit and seeming somehow gorgeous and accessible at the same time. I remember the first time we talked on the phone, a conversation I cooked up just to hear your voice. How you used to drop the names of authors, how I used to feel so sure. You were like a magnet, like flypaper. Get away? I couldn’t even look away.

And then it was all airplanes and dinners and borrowing your sweaters and learning about wine, and trying to cook things to impress you. I had a chunky blue iMac which I used as a stereo, and I slept on a futon, but at least I had my own place. I was 26, trying to be a grown-up. You were 38, you were definitely a grown-up. You lived in an apartment with two bathrooms, the definition of success in Manhattan. You took me to shows, to tennis tournaments, to a B&B on the Jersey shore, even though you hate B&Bs, too much floral decor, way too much socializing. You met my family and danced with me at a wedding. I wore a black dress and we looked out of the floor-to-ceiling windows and you told me you loved me.

We went to France, and England, where I met your family and ate parsnips. I learned how to cook, something besides Trader Joe’s couscous and salmon in parchment paper. I was content, and I learned that when you were quiet or agitated, a large Starbucks cookie–preferably with M&Ms–would do the trick. (You claimed not to have a sweet tooth, but I still know what happens when ice cream is left in the house.) You tried to buy me shoes, but I was too proud. You bought me everything else instead. We went to Costa Rica, rode bikes through a little town, ate plaintains and drank cold beers on the beach. We played backgammon in a tree house until it was too dark to see. And I was still so sure. Read More>

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ALS Awareness Month

May is ALS Awareness Month. Last year at this time, I changed the Speed4Sarah Facebook profile picture to this:

I like to stay optimistic about my future, to recognize that no one knows what’s going to happen and that we could, in fact, find a solution to slow down this demon—in my lifetime. But I also appreciate statements like the one above, because I think they help people begin to understand the absolute INSANITY of ALS. It sounds like science fiction, but it happens to people every day. Today, someone will experience the first signs of ALS, and they will have no idea what the hell is going on. Someone (many someones) will be officially diagnosed. People will die of ALS today.

It’s a conundrum for me, as I try to share my love of life on this blog, while not sugarcoating the reality of how everything has changed, and will continue to change.

I am someone who could walk—and who did, even at times when driving made a lot more sense. I am someone who could run—and ran miles. I am someone who cooked—and loved trying new recipes. I am someone who traveled—all over the world.

Those things are gone, and it’s completely true that I’ve found new ways to release stress and find happiness. But I miss my abilities, which now feel more like they were superpowers. Read More>

|Categories: Cure, Diagnosis, Drugs, Faces, Life, Progression, Research, Therapy | Tags: , , , , | Permalink

Good Listening

Scarlett’s school fundraiser was on Saturday night. It was a beautiful event, and a smashing success, thanks to the efforts of so many people. Two days before the party, I came down with a little cold, and by the time Rob and I arrived at the venue, I had almost no voice. So there I was, in a loud room of 400 people, without a great way to communicate. And it made me think about ALS. I was in a wheelchair, my hands weak enough that Rob had to cut my food for me at our table, and to top it off, I couldn’t talk. This is the reality for many people with ALS, all day, every day.

I thought about my friends who say that ALS is destroying their intimacy with their spouses, their ability to parent their children, their social lives. We can—and we do—make the best of it. But at its core, ALS is a disease that seeks to destroy our relationships with other people. It’s a cruel and isolating illness. That night at the party, I was ok. I knew my voice was coming back, and I could still summon up a whisper to get short thoughts across. As I said to a friend that night, I love talking (“Oh really?” she joked. “I hadn’t noticed!”), but taking a night off from it was illuminating.

It’s highly likely that I talk too much. And it was interesting to just listen, to hear what people say to a person who is pretty much just smiling and nodding. But it was also frustrating. I have comments. I have stories. I have jokes!! That night, I relied on a whisper that was still sometimes too low to be heard, which is why Rob almost lost a bunch of money during the live auction portion of the evening. Read More>

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