An ALS love story: One family’s courage, and the light it shares

I held onto this story until Valentine’s Day, because I don’t think I know of a better love story to share. It’s not a Hollywood kind of story. It’s less romance than reality. But love is weaved through every line — love of life, love of family and friends, love of a husband and wife. The story of this family, and particularly a remarkable woman who is battling ALS, speaks to the difference love can make, in corners of the world you never imagined it could reach, if one has the courage, even amid astounding difficulty and even sadness, to express and share it. — EC


The deadline for this story was not set by an editor or a producer. It was set by a disease, and it is a hard deadline, in every sense.

Carrey Dewey has some things to say before she can speak no more. She is battling Amyotrophic Lateral Sclerosis (ALS). It has stolen her ability to walk, to breathe without assistance, to cough without help, to sit up, to wipe her own tears, to stroke her children’s hair. One by one, every little thing we take for granted, every little thing she took for granted in those days that now float up to her periodically in Facebook “Memories” photos, has left her.

She was diagnosed in August of 2014, nine months after her first symptoms. She was 42 years old, her children aged 5, 7 and 9. The doctor who confirmed her diagnosis told her to get her affairs in order, then go make some memories. Her life expectancy was set at 3–5 years. Doctors told her the form of ALS from which she suffers is more aggressive than most.

That was 3 ½ years ago. On a frigid January afternoon, in the Deweys’ living room. Carrey and her husband, Eric, sit in front of a fireplace, beneath a mantle still decorated for Christmas. She asks Eric to move her hand into her lap, and he does, then leaves his hand on hers. Let’s do this soon, they suggested not long ago, because now, ALS is gradually taking Carrey’s ability to speak.

For Carrey Dewey, this is no small thing. In the years since her diagnosis, words have been her weapon against this “beast” (her word) that has befallen her. A teacher before her diagnosis, she has spent her years with ALS on an assignment she gave herself — to write, poignantly, of her experiences. She has shared details, heart-warming and heartbreaking, graceful and gritty, through a personal blog on Facebook that has grown to more than 5,000 followers around the world. It has inspired, comforted and enlightened countless people of all ages who suffer with the disease, or are touched by it.

When she began to notice the changes in her speech last fall, she took to the blog with characteristic humor and defiance. She posted a picture which says, “I’m not drunk. I have ALS. I wish I was drunk.” But this is a difficult blow. She also writes, “ALS might steal my speech. It will never take my voice.”

Carrey Dewey has a voice. She will always have a voice. She wants to speak. She has a message. Listen to it.

“I guess it’s good that I’m losing my speech last,” she said. “. . . I really, honestly, did not think I would lose my voice. I thought something else would take me. The good news is, I’m still here. The bad news is, I will lose my speech. I can’t swallow completely. So I’m learning to communicate with a computer with my eyes. We’ve got phrases typed in there, Ian (her oldest child, now 13) typed in phrases for me, my needs and basic things. So that will give me a start. But to learn to type each letter with your eyes, when you’re a blogger, seems a little overwhelming. But we’re going to do it. I’m anxious to show people how we have to communicate.”

Making some memories

These are not the general responses to calamity you may be used to hearing. “I guess it’s good,” or “I’m anxious to show people.”

They also are not responses that will surprise anyone who has spent time with Carrey Dewey over the past several years, not family, not friends, not the numerous medical care professionals.

Make some memories, the doctor told her. Two days after the diagnosis, she started checking items off her bucket list. The family went to the American Girl Doll Store in Chicago. In the coming months, they would go on a Disney cruise, skiing in Colorado, swimming with dolphins in the Atlantic Ocean, to meet runners competing in the Boston Marathon in her honor. She wanted to throw her husband a fiftieth birthday party. She settled for throwing the huge bash when he was 45. They also threw a big bash for her on her 45th birthday, video on a big screen in a large reception room. We partied like it was her last. It wasn’t. When ALS settled on this person, it chose a determined adversary.

The bucket list used to have a lot of ambitious travel. Now, the list includes items that are more simple, but no less difficult. On this Valentine’s Day, she hopes to get up early and see her son sing in a schoolwide mass. Her youngest daughter, Colleen, has auditioned for a role in a school play, Beauty and the Beast. Recently, she made it to cheerleading competitions for both Colleen and her older sister Anne Marie. After this interview, they were heading to a birthday party. It’s a major effort. It’s an effort she wouldn’t miss.

“My children are going to remember how I handled ALS, so I want them just to view the strength,” she said. “Not saying I don’t cry. They’ve all three wiped my tears many times, because that’s the hardest part. I’ve tried to prepare them with the love notes, letting them know that I’m always in their heart. They all know that. I told them that before ALS. But I emphasize it now. The young kids, they all understand it on a different level. My oldest can explain it to you pretty well. My youngest wants to know what I think what I’ll do when I’m a grandma. So there’s a wide range of understanding and acceptance. But we also started therapy right away. And we have a lot of cuddling in mom’s bed. A lot of blankets and cuddling.”

Make some memories, the doctor told her. For her daughter Ann Marie’s First Communion, Carrey knew it was a potential memory milepost. She wouldn’t get to shop with her daughter for a wedding dress. She scouted out places all over town at which to find dresses. She braced herself not to cry the whole time. Then Anne Marie asked, “What did you do with your wedding dress?” And she had her answer. A friend crafted two First Communion dresses out of Carrey’s Wedding dress, one for Anne Marie and one for her younger daughter Colleen.

In June, a blog post: “Yesterday was Anne Marie’s birthday . . . When she was blowing out her candles, she said every time she makes a wish it’s always the same and looked at me with her sweet smile. She has wished for it, prayed for it, cried for it, advocated in DC for it, written letters for it, dumped ice for it, sold lemonade for it … it’s truly heartbreaking.”

And inspiring. Let’s not forget, inspiring. These are not saints. They have their difficult times. The whole thing becomes too much for each of them and all of them. They are on edge sometimes. One of the phrases Ian had to program into his mother’s speaking apparatus was, “No fighting in my room.”

But this is life. I can’t tell you how many times, just while writing this, I’ve had to get up to take a break, as much for emotional reasons as any other. They can’t take a break.

‘Adapt, adjust, move forward’

Their motto has been, “Adapt. Adjust. Move forward.”

Things don’t get easier. Eric had gallbladder surgery in September. Carrey battled pneumonia. Amid the struggles, light. Colleen wandered into the bedroom and performed Lady Gaga’s, “Million Reasons.”

November was a difficult month. She started to notice a change in how people interacted with her. She wrote about it:

People don’t know how to act around me, or the amount of equipment I travel with can look overwhelming. I know I look funny, talk funny, walk funny … oh wait, I don’t walk anymore. I get it.

My mind and brain are exactly the same. It’s hard enough not being able to contribute or participate as I had done so passionately before ALS. I know you’re uncomfortable, I understand. But when you avoid looking at me, I notice. When you don’t say hello to me, you make me feel different. I know it’s not intentional but it still hurts.

So my public service announcement from all disabled people is: Please don’t fear me, please don’t ignore me, please don’t treat me like I’m invisible, please see beyond all the equipment and oddities and “help me feel normal” by at least acknowledging my presence.

A couple of weeks later, on Thanksgiving Day, she was back, noting how much good there was. Caregivers who massaged her permanently clawed feet long enough that she could fit back into some old boots just for a while. Friends who brought her children a large book filled with letters, pictures, and newspaper clippings from people all over about their mother.

Not long after, she came down with shingles. All around her are friends who have helped her. Meals without fail for three years. Visits. They come to clean her house. Her medical caregivers are astounded by her. These people, too, are heroes in their own right. I can’t name them all here, and I don’t want to distract from her story. But one anecdote is instructive, of the heart of her support group, and of her ability to inspire action.

Eight minutes from the Deweys lived another ALS patient, diagnosed a year before Carrey. When her friends and family found out about this man, they reached out. They took meals, restaurant gift cards, supported him financially where possible, helped with his van repairs.

Though Carrey’s disease progressed more quickly than his, she still struggled this past December with his death, which he had scheduled in advance. Yes. Some ALS patients, she writes in her blog, make the painful decision to be medicated, have their breathing apparatus removed, and give up the fight.

“I’ve lost several ALS friends but his loss hurts a little more because I knew him personally and felt I was taking him under my wing, sharing my abundance,” she wrote on Dec. 30. “In the end, ALS was bigger than any support we could provide.”

Everyone who helps, who brings a meal, who writes a note, who helps with children, she says, is “sharing the light.”

What love looks like

So here it is. When I asked her, what it was she really wanted to say on this day, with her voice perhaps growing short, it was to all these people, and to all of us, that she spoke. She doesn’t want that light to go out.

“I have been incredibly fortunate to have a host of friends and family,” she said. “We have so much. Don’t take any of it for granted. But I would like to see the same love and help and support for other patients, even if you don’t know them. Bring them a meal. Offer to clean their house. I think that taking whatever light that I shined on people to carry that light. This is not going to end when ALS is done with me. I would like to see people continue to put their faith into action. It’s been just a beautiful gift that I’ve received.”

I met her husband, Eric, when we lived in Threlkeld Hall at the University of Louisville. I looked back for some pictures of us the other day and I couldn’t find any in which we weren’t both, how do I put this, in a pretty festive mood. Eric was a fun guy. He was a rolling party. Everybody liked him. We all knew him to a be a good guy. Even so, I don’t think any of us would’ve picked him, of all the people we knew, to be the best father and husband we would know.

That’s what he has become. Through her blog, just as many relatives and caregivers and friends of those with ALS have been interested in things she has shared about him. And when the talk turns to this little family, that’s where it gets tough. Today is Valentine’s Day. This is what love looks like.

“I could talk all day long about ALS, but it’s difficult to talk about it in terms of my children,” she said. “The good news is, Eric is awesome. If anybody can do it, he can do it. So that brings me, definitely comfort, knowing it will be hard, but he’ll be great. Right now it’s a lot on Eric because I can’t physically do anything. So it’s harder than being a single dad, because he’s doing all of that, and he’s caring for me, and working full time. The care for me is a lot. So he’s got a lot on his plate and he’s still doing a great job.”

Then she looked at him next to her and said, “How’s that, Dewey?”

He smiled. Just when you’re about to cry she’ll say something funny.

“One of the things I’ve learned from this is that the disease is a progression, so the stuff we go through today didn’t go from zero to today, it has built over time,” he said. “And then we’ve had an outstanding support system. There’s someone here when I’m at work. There’s someone here if I’m working from home. But if you were to go from zero to where I am today, it would throw anybody for a major loop. But being able to gradually get into it, you understand it’s a progression disease, and you’re going to be constantly changing the way you get things done. Our motto has been adapt, adjust and move forward. With schedules, and where Carrey can go and can’t go, to taking care of running the household.”

As we’re talking, their youngest, Colleen, now age 9, is lying back in a chair watching and listening. She has brought from her room all the love notes her mother has given her. They started in Carrey’s own handwriting, now she dictates them to others. Colleen understands her mother has a deadly disease and that there is no cure. The time-frame, however, is a bit sketchy. In her blog, Carrey wrote about Colleen asking if she were going to sell their house once all the kids moved out.

So many friends she connected with after learning she had the disease now are gone. She was contacted by a woman who lost her daughter at age 16 to the disease, and said she’s thankful, despite everything, not to have to endure that. But recently, when a medication change left her sleeping for the better part of four days, she mused, “I lost four days of whatever life I have left.”

Time, borrowed or otherwise, is the most precious thing there is. In time since our interview, she is using an interpreter more, because her speech is becoming more difficult to comprehend.

“I am tired. I am very tired,” she wrote. “I am definitely sleeping considerably more, giving me less hours of the day to get my long list of things done. I’m too busy to sleep, but ALS has another opinion on that.”

Carrey described recently her latest “best gift ever.” It was a clip-on microphone with a small amplification device that helps others hear her and understand her more clearly.

Carrey Dewey has a voice. And she has a message. She doesn’t need a writer or a camera or anyone to communicate any of this. Goodness, her last post is not just heartfelt, but wonderfully written, one letter at a time. But she does, at long last, I suppose, need a microphone, and an amplifier. So let us listen carefully.

“Knowing that this would be how I would be remembered — I definitely didn’t want this platform,” she said. “But being young, I felt I had maybe more of a voice. People that are our age can see that it’s not an old person’s disease, as once thought.”

Donate money for research (click here to give). Get involved with families affected with this disease and many others. Read her words, at this Facebook page. And hear the words of someone who is using what words, and life, she has left to demonstrate how indefatigable love can leave an indestructible legacy.