OUR LOCKDOWN IS REAL.
Locked inside my own body, confined to my wheelchair, deprived of my independence and freedom.
The COVID-19 pandemic and Amyotrophic lateral sclerosis (ALS), better known as Lou Gehrig’s disease, have a lot in common.
The pandemic has forced us all to isolate to some degree, and it’s turned our lives upside down in the most unimaginable way. But the government’s forced lockdown is nothing new to me: It’s been my daily reality for almost 8 years now. My body is my own personal lockdown, forcing me to be totally dependent on others. Yes, I’m familiar with the concept of lockdown—being stuck inside this body, unable to go where I want to go. Being trapped in our homes is something most wheelchair-bound people experience each and every winter, stuck inside for 5 months of the year, with no real way out.
You have to adapt to survive!
But we’ve learned to adapt. Several companies have come up with ingenious ways to convert their equipment to manufacture masks, personal protective equipment, or hand sanitizer. All these accomplishments make me proud to be a Quebecer. You have to adapt to survive! Since being diagnosed with ALS, my body has steadily become weaker, so when it comes to adapting, I know what I’m talking about. No sooner did I start using a cane before I needed a walker and then a wheelchair. Things have plateaued for the moment, but I know my condition is only temporary. Unfortunately, I can’t outrun my failing body.
Research provides a source of hope.
You’re afraid of catching the virus and dying from it? Everyone with ALS knows that death is the next step for them. Nancy Roch wrote this before dying from ALS: “The whole world has rallied together to fight COVID-19, even though only 8% of people die from it and 92% recover.” In the 150 years since ALS was first identified, it’s had a 100% death rate, and no one has ever recovered from it. You’ve been waiting a few months for a vaccine? I’ve been waiting for a miracle drug for 8 years now. ALS is unforgiving.
We felt so vulnerable… terrified of catching COVID-19. What if our neighbours got it? What if we caught it while out grocery shopping? Welcome to my world: At risk of catching the flu, which would have terrible consequences, or could even be fatal, because my breathing is affected and because it’s impossible for me to clear all the secretions from my throat and lungs. Yes, we’re completely and utterly vulnerable. But you don’t hear us complaining because we’re too busy surviving. We’re all dependent on each other.
Don’t worry, the pandemic will come to an end! But as you ease back into your work, your routine, and your regular activities, spare a thought for everyone with ALS, whose lockdown and daily challenges will continue, without a break or respite.
This holiday season, we invite you to show your support by making a donation within your means. With your help, the ALS Society of Quebec can offer support to families affected by ALS and thus help break their daily isolation.
Thank you for your support. Happy Holidays!
Chantal Lanthier, Diagnosed with ALS in January 2013
To make a donation now, please visit our website: https://www.imakeanonlinedonation.org/slaquebec/
About the ALS Society of Quebec
Whether it is attentive listening, online resources, virtual support groups and conferences, or a financial boost for the most vulnerable families, the ALS Society of Quebec provides diversified and personalized services to support all families touched by ALS across the province to maintain the best possible quality of life, despite the upheavals that such a diagnosis can cause in their daily lives.