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When a Friend Asked Me If I Was Mad at My Body Because of My ALS

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After my ALS diagnosis was doubly confirmed by the University of California, San Francisco 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.

Sarah Coglianese.2

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.

But I am kind of obsessed with other people’s bodies in a new (and I hope not creepy, but probably creepy) way. I’ve turned into a person who stares at people when they’re walking down the street while I’m riding by in a car. I look at their legs, especially the calves of runners. I’m not mad at my body, but I am amazed at how many people’s bodies work. The sheer number of people who are walking down the street on any given day, not understanding that they are performing a miracle.

I am still surprised I’m not one of them. I can’t help but think of myself as an active person, someone who runs, who hikes, who walks with heavy grocery bags. Someone who goes to yoga class and stretches strong legs into the air. Certainly someone who has no trouble breathing.

I’m not mad at my body, but I wonder why it won’t get up and walk across the room. It used to do that so well. I want to stand. I just want to stand up and explain that it is 2015 and we don’t have incurable diseases anymore. They don’t exist. Not everyone survives, of course, but everyone has a chance. Our bodies are amazing things. They can heal from so much. I want to explain this to whoever is in charge of assigning diseases, even though I know that I would be talking to air.

I’m frustrated with my situation. I’m mad at ALS. In my worst moments, I’m even mad at all the ALS organizations that are trying to help, because they haven’t helped yet. I know they’re working hard. I read all the news and see that there are developments to be excited about. But until someone says to me we will fix this in your lifetime or we have good news for you, it’s hard to share the enthusiasm of press releases highlighting studies that might drag on for years before there’s anything tangible to show.

I appreciate that ALS will eventually be a manageable illness, and maybe even entirely a thing of the past. I know this is huge. But I also know so many people living with the disease today, and I want their lives back. I want my life back, and I don’t mind that this sounds selfish. There are a lot of us, and I just want us to have a chance.

When the mass email goes out explaining to everyone that this nightmare is over, I want us all to know that our bodies did their part. That they held on, and we are still here.

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The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

Originally published: December 4, 2015
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