Living with ALS means learning to let go, to enjoy the present, and to appreciate the little things
My name is Chantal Lanthier. I’m 47 years old, a wife, and the mother of an 18‑year‑old daughter. Until very recently, I worked for the federal government in a management position. Then, on January 22, 2013, I was diagnosed with amyotrophic lateral sclerosis (ALS) and my life was turned upside down. I don’t think I need to describe the grief and bewilderment that followed. Everyone — family, friends, and other loved ones — were stunned by the news. “Why me?” I asked. I mean, my life was pretty normal, up until my right leg started acting up. In fact, I began having trouble walking in November 2011, and would often fall. After seeing numerous doctors and neurologists, I finally ended up at the ALS clinic at Notre-Dame Hospital.
After some very difficult months where I had wondered “Why me?”, I started asking myself “Why not me?”. Why would I be under a special protection while some people die brutally from cancer or a deadly accident. After some time, I accepted the journey to come.
I remember that one of the first questions I asked the counsellors was why is it said that this disease causes a lot of suffering. I was feeling pretty well physically. Sure, I was becoming less mobile, but apart from my right leg, I was doing good. I was then told that there is a difference between pain and suffering. With ALS, you exprience mostly psychological suffering. We must learn to continually adapt to the loss of our physical capacities, and we must accept that many daily activities we took pleasure doing are no longer possible. I quickly became aware of this last Spring, when I had to let go of my motocycle. Living with ALS also means becoming experts in equipment for people with limited mobility and government services.
Living with ALS means learning to let go, to enjoy the present, and to appreciate the little things in life. But it also means continually adapting to your decreasing abilities and accepting the fact that many enjoyable hobbies and routine activities are no longer possible. Living with ALS also means having to become an instant expert on equipment for people with reduced mobility and on government services for the disabled.
In my case, I see it as life before ALS and life after ALS. Since my diagnosis, I’ve focused on finding new activities that fit my current abilities. I stay active by volunteering with the ALS Society of Québec and by helping to raise funds for research and support for patients and their loved ones.
Through my involvement, I have met people with hearts of gold, and I feel compelled to tell the world about all these wonderful people, from the staff at the ALS Society of Québec to fellow ALS sufferers. Their ever-present support, sympathetic ears, and big hearts help provide much-needed comfort to all involved during this difficult time.
Finally, I would like to end with the words of Friedrich Rückert: “Never stop hoping even when you’re feeling hopeless! When one door closes, a thousand more open.”