Tag Archives: cure als

My Body, Myself

After my ALS diagnosis was doubly confirmed by UCSF and the Mayo Clinic in Rochester, I decided to send a mass email letting my friends and family know what was happening. Partly, it felt ridiculous to be putting this kind of information in email, but I didn’t know how else to share it. When you give people bad news, you often end up managing their reactions, even if it’s your bad news. That doesn’t upset me; I know how hard it is to say the right thing when there is no right thing to say. But I couldn’t imagine the countless conversations as I explained ALS, my newfound area of expertise.

So I opted for email, and I received a lot of beautiful and thoughtful responses. Maybe people didn’t know exactly what to say, but the notes were heartwarming to read. Many were telling me that they believed in me, that they loved me, that they were shocked. Even hearing that people were speechless felt like a form of support. I knew the feeling of being speechless.

One friend asked if I was mad at my body. It was an interesting question, and one I hadn’t thought about before. So I gave it some thought and decided that no, I wasn’t mad at my body. I felt like this was something that had happened to me, not something that I had done to myself. Fast forward three years and I’m still not mad at my body. I can feel the effort it’s making to work correctly, even as things get more difficult. Read More>

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>

Downgrading a Deadly Disease

“HIV is certainly character building. It’s made me see all of the shallow things we cling to, like ego and vanity. Of course I’d rather have a few more T-cells and a little less character.” —Randy Shilts, author of And the Band Played On and The Mayor of Castro Street

I recently finished reading Season of the Witch: Enchantment, Terror and Deliverance in the City of Love. David Talbot’s history of San Francisco is dark and stormy, frighteningly full of events that belie the free-loving-60s-hippie spirit the city is known for.

Among the stories recounted in the book is that of the HIV/AIDS epidemic that turned formerly fun, flamboyant neighborhoods into ghost towns. The gay population of San Francisco—of the country, really—was hit the hardest; healthy people struck down in their prime. That felt familiar.

I know that AIDS and ALS are very different. ALS is not contagious, and it’s not an epidemic. There are so few people who have it, in fact, that it’s considered an orphan disease, and commands very little attention from the NIH or the public. We all know this, just as we know that after this summer’s Ice Bucket Challenge, the game briefly changed for ALS.

But it takes a lot of money and a lot of attention to impact a fatal disease. Read More>