by Sarah Coglianese
Receiving an ALS diagnosis when I was 33 years old was the biggest shock of my life. Or rather, it wasn’t a sudden moment of shock, but a continuous series of them, starting the first time I saw a neurologist to address all of my clumsy and embarrassing falls. He peered closely at my twitching arms and used the words “ALS” and “worst case scenario.”
The shock ebbed and flowed for the next 6 months, through rounds of testing, while I waited for an official diagnosis, and it flared up when the diagnosing doctor told me to “hang in there.” It flared its hardest when I looked at my two-year-old daughter and tried to comprehend what was happening to us, and when I watched my husband lie on his back and cry.
Amyotrophic Lateral Sclerosis is a disease you do not want to get. It shuts down your voluntary muscles: legs, arms, throat, lungs. The average patient dies within 2-5 years.
It’s still shocking now, as I type this from my wheelchair, with cramping fingers, while a Bipap machine breaths for me, as it does for at least a few hours each day. How can this be my life? I used to be a runner—once I ran a marathon next to a man who was juggling bean bags, both of us laughing as we crossed a bridge and I called him a show-off. My legs worked so well then.
I recently wrote (but never sent) the following letter to a friend of mine who has been living with ALS for almost 10 years. He’s an outlier, a survivor. So far, I am a survivor, too.
June 8, 2015
I was thinking of you today, and thinking of myself, too, in that sort of unattractive, self-pitying way I sometimes do. Don’t you just want your life back? I want my life back so desperately today. I realized something recently: spontaneous acts of affection are slipping away from me. Not all intimacy, that’s not what I mean. But the little things, the things that feel much bigger once they’re gone. To stride across a room and embrace someone just home from a trip. To reach out and squeeze someone’s hand, a quiet connection. Even to completely and totally invade someone else’s personal space while you’re watching television, so that for the duration of the show, you’re not quite sure where you end and the other person begins, and you start breathing at the same pace because it’s just easier that way.
If I could have full command of my body again, I would positively spin across the floor when the front door opened. I would take a bath, my toes flexed and my hair spreading out behind me like a mermaid’s. I would stand in my closet getting dressed, and I would pile my wet hair on top of my head in a bun, and I would pour two glasses of wine.
I miss my life. You know what I’m talking about, ____. There’s plenty to be happy about still. We do make the best of things. But right now I’m tired of compromising. And you’ve been doing this for so long. How? How do you keep your frustration from spilling out, forcing the ones you love most to back away so they don’t drown in it?
I still have my little person. She’s small enough to crawl into my lap, innocent enough to declare her devotion daily. I have some form of the flu right now, and when I told her I was sick, she smothered me with kisses. She tucked covers over me and said she hoped I was comfortable. Then she asked me when do parents die? And I almost died right then.
My whole body hurts with this stupid flu thing, and I can’t remember, are you supposed to feed it or starve it? It hardly matters, all food looks and sounds horrible. Even ice cream. The situation is obviously dire. Someone told me that when you’re sick (like with the flu, not with ALS), you regress emotionally and begin to doubt everything. I know I’ll feel better soon, but I’ll still have ALS, so I can’t muster up a whole lot of enthusiasm for the better days ahead. Then again, that’s probably the regression talking.
Scarlett and I went to the Botanical Gardens in Golden Gate Park last week. We are just the right height for each other, and we strolled among the flowers and the trees, spotting turtles and fish in the small ponds. She raced around a fountain, and wandered off the path to places where I couldn’t go, running back as soon as she lost sight of me. She said it was like the secret garden, which we’ve recently read. But in that book, the boy in the wheelchair gets up and walks. He lives, maybe forever. She doesn’t care; in her mind the day was perfect, and really, I felt that way, too. Her face was covered in pretzel salt and I took pictures of her in front of yellow flowers, so brightly bunched, they barely looked real.
But then, my husband. It’s not his fault that I’m stuck in a chair, that I can’t put my feet all over him while we watch Mad Men. He probably never really liked that anyway. But I did. He leans over now to kiss me and my arms won’t reach up. That’s not his fault, either, so I hope I’m making the right point here. But even if no one is at fault, these stolen moments, we need them more than ever. Isn’t it usually those little connections that help get you through something much bigger and scarier?
I’ll stop short of saying it’s not fair. What is fair? I didn’t expect a fairy tale, but I didn’t expect this reality, either. Enough. I hope you’re doing well today. I hope you’re taking a walk with your dog and looking at the city and thinking that life, while quite different these days, is still worth living.
There is no cure for ALS. With your help, we can change that:
Sarah recently created a fundraiser called #WhatWouldYouGive that will help people understand just a bit of what it feels like to be stripped of these basic abilities. The things that most of us take for granted.
Inspired, a group of Sarah’s former coworkers in publishing—at Avalon and Perseus Books Group—have started a #WhatWouldYouGive team fundraiser to raise money and awareness for ALS research. The majority of this team is made up of people who don’t have ALS. People who are giving up an ability for a short period of time, to help raise awareness of what ALS is and what it does.
With more attention and funding, we can find treatments and an eventual cure for ALS. That’s why our team is raising money for ALS TDI, the largest nonprofit biotechnology organization dedicated to developing effective treatments for ALS.
What would you give to stop ALS? Please help by donating to ALS TDI and advancing ALS research. #whatwouldyougive #letsmakeALShistory
Join us. Find out more and donate, today:
Sarah Coglianese was diagnosed with ALS in 2012 at the age of 33. She is a writer who has been published in The New York Times, Redbook Magazine, and ScaryMommy.com. She blogs regularly at speed4sarah.com, a site dedicated to raising awareness of ALS through the faces and stories of people living with the disease. Sarah lives in San Francisco with her husband (who rarely cries) and their 5-year-old daughter, the feisty (and very helpful) ruler of the house.