On December 11, 2015, at age 60, Stella Wojas got the shock of her life when she woke up after four days in a coma due to respiratory failure only to be told she had amyotrophic lateral sclerosis (ALS), a disease she’ll never recover from. Despite an overwhelming feeling of loneliness, she manages to break through the isolation by attending the support groups organized by the ALS Society of Quebec in Lorraine. Today, she’s sharing her story.

WHO AM I? My name is Stella Wojas. I’m a loving woman, mother, mother-in-law, sister, sister-in-law, aunt, confidante, and friend. I’ve been a “superwoman” single mom for close to twenty years now. I swam, biked, and ran—figuratively speaking, of course, because I never had an athletic bone in my body or the time to train for an Ironman! Essentially, I juggled the duties of being a good mother with my work responsibilities and my personal interests. At 47 years old, I finally met my soulmate and the love of my life. We made plans to enjoy a beautiful retirement together, but just a few months before finally getting there, in February 2014, the man of my dreams died suddenly from a stroke.

Stella en août 2015, quelques mois avant de recevoir son diagnostic de SLA.

Stella in August 2015, a few months before her ALS diagnosis.

In the year following his death, I felt weak and tired. I went to see my doctor several times, who ran all sorts of tests. He’d always say to me: “Stella, you’re 60, and you’re one of my few patients who is amazingly healthy and who takes no medication. It’s normal for you to feel tired, your partner just passed away. You’re depressed, get some rest.”

To say I rested is an understatement! I took a one-year sabbatical from my job, and I slept all day, every day—sometimes for up to twenty hours at a time—until December 11, 2015, when my sisters finally took me to the Emergency department. After waking up from being in a coma for four days, I found out I had ALS, an incurable degenerative disease. I was in shock and disbelief! Why bother bringing me back only to tell me that?

ALS took such a toll on my body that I was forced to sell my house and move into somewhere safer and more accessible, because on top of my breathing problems, my muscles were beginning to fail. Only people my age will understand this reference, but my upper body was as floppy as Gumby’s! I had to get rid of almost everything I’d accumulated during my lifetime—things that were a reflection of the person I’d been. In their place, I got a walker, a commode, a motorized wheelchair, and an electric bed—all the things I needed to maintain a certain quality of life for the person I’d become.

Le 9 octobre 2016, Stella réalise l'un de ses rêves: un tour d'hélicoptère de Mirabel à Mont-Tremblant.

 On October 9, 2016, one of Stella’s dreams came true when she took a helicopter ride from Mirabel to Mont‑Tremblant.

There’s the Stella before the ALS diagnosis: proud, active, and take charge. Then, there’s the Stella after the diagnosis, the one who had to cope with the effects of the disease all alone, who went through the stages of sadness, denial, and anger, who raged against the whole world, who wept at the injustice of it all, but who finally gave in and accepted the situation. The Stella after the diagnosis is learning to be humble, is amazed at how resilient she’s become, and has developed the ability to laugh at herself.

Living with ALS means always having to adjust. It means mourning the loss of my independence, dignity, and modesty every single day. Each time I master something, another nasty little muscle refuses to do what I want it to do. So, I had to swallow my pride, let it go, and accept people’s help with things as simple as getting washed and dressed, eating, and getting up and lying down.

Stella et son amie et aidante Martine lors d’un groupe de soutien à Ville Lorraine, accompagnées de Yuan, l’inséparable de Stella.

Stella and her friend and caregiver, Martine, at a support group in Lorraine, with Yuan, Stella’s faithful friend.

I constantly feel death looming over me. I’m living on borrowed time, with the sword of Damocles hanging over my head, but death doesn’t scare me. “Death is not the greatest loss in life. The greatest loss is what dies inside us while we live.”[1] This quote really resonates with me, because it’s exactly how I feel about what ALS has done to my life.

That’s why, despite the frustration that comes from losing my independence and everything that entails, I try to look on the bright side, to appreciate all the little pleasures in life, like the kindness and dedication of the people around me, the warm rays of the sun, and the breeze brushing against my skin, and I’m easily moved by the beauty of my surroundings—the rising and setting of the sun, the changing patterns of the weather, and the coming and going of the seasons.

I applaud the courage of everyone living with this damned disease and especially everyone at the ALS Society’s support groups in Lorraine, who are a great example and inspiration to me, because modern medicine still can’t explain what causes ALS, or how or why people get it. Our meetings not only help to break through the isolation, they also help to dispel the myths about ALS, provide us with moral support, and give us a better understanding of the reactions of our loved ones who are directly affected by the disease. There’s also no common denominator between the people who have ALS, or how fast or in what way the disease takes its terrible toll, which doesn’t make the researchers’ work any easier. There’s still no treatment and no hope for a cure. While we wait for a breakthrough to happen, we stick together and help each other out.

[1] Norman Cousins

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