Remaining Positive — but Always Honest — in the Face of ALS

Editor’s note: Sarah Coglianese and her family are featured in this video, in which she talks about living life to the fullest for her daughter, Scarlett, despite ALS. For more visit Sarah’s page on our Live Unlimited hub. 

She also wrote this piece on her feelings about ALS Awareness Month.

May is ALS Awareness Month, but in many ways I feel like the people in my circle of friends and family are far too aware of the disease. Last year during May, I posted on Facebook every day, sharing stories of people living with ALS, and writing observations about how my own life has changed since my diagnosis in 2012.

Sarah with husband Rob, daughter Scarlett and dog Otto.

This year is a little different. I’m tired of ALS. I’m tired of talking about it, of writing about it, and I’m extremely tired of feeling it take over my body. I’m tired of how it affects my daughter, I’m tired of how it has immeasurably changed my marriage, turning my husband into a caregiver instead of a partner. It’s a role he is not particularly suited for, just as I am not suited for the role of Woman Who Sits Down All Day And Asks For Help.

It’s important to me that I am living my life with positivity, despite the challenges, but during this ALS Awareness Month, what I want people to understand is that it’s hard. At 37 years old, I am suddenly a person whose friends die. Though this fact helps me appreciate the little things in life even more, it’s also devastating to be a part of a group that just keeps losing. I am haunted by visions of children who are trying to sleep on that first night without their mom or dad.

Many of my friends with ALS focus on humor and on the goodness they can find in each day. I do that, too. I will continue to do that. But raising awareness brings with it a responsibility to be real, and the hard times are just as real as the beautiful ones.

Often, it’s a simple matter of perspective. If my daughter is in my lap and we are reading a book, do I focus on the way her body feels snuggled against me, or am I preoccupied with how difficult it is to get all the words out, or by my complete inability to hold the book? Am I happy I got to read one book to her (of course I am) or am I sad that when she wants a second one I have to ask my husband to do it, and then I’m sitting alone again? (Yes.)

Life with ALS is never one way. It is as nuanced as any normal life, mainly because those little moments like reading together take on such great importance. Without ALS, I might have asked my husband to read both books, because I could reasonably expect hours, days, and years of reading with our little girl. Now I know better. There are no guarantees.

And that’s when I know that it doesn’t matter how tired I am of ALS. I have to keep talking about it, because it is a disease without treatments, without a cure. Whose population remains stable, because every time someone is diagnosed, someone else dies. It’s a cruel design, a way to keep our group small, so that it seems like fewer people are affected. But if you factor in all the people left behind, the picture widens. It bleeds off the page, and takes on a shape like grief.

The thing to do – – the only thing to do – – is keep going. There will be a cure for ALS. I tell myself it will be in my lifetime. I picture a long future with my daughter, one where my husband doesn’t have to brush my teeth or attach so many devices to me at night that he may as well be sleeping in a different room. One in which we are a whole, functional family again.

And in this future, my friends are living long lives, too.

Sarah Coglianese is a writer and former marathon runner whose work has been published in The New York Times, Redbook Magazine, and, among others. Sarah was diagnosed with ALS in 2012 at age 33, and started to raise awareness of the disease. She lives in San Francisco with her husband, their six-year-old daughter, and Otto the dog.