Updated: Mar 8, 2021
I recently took the time to reflect on my experience as a disabled mother in the early stages of the COVD-19 pandemic, thanks to the Glenbow museum.
The Calgary Glenbow Museum is collecting letters from the community. Glenbow wants to hear about your experience during the COVID-19 pandemic.
You can learn more about the request here.
Photo Credit: Glenbow Museum
As a mother with an invisible illness and disability, I wanted to share my story and give my unique perspective during this pandemic. While we are a far cry form getting back to normal, I think there are many things we have learned from this collective crisis.
Reflections of the 2019-2020 Pandemic (from a mother with a disability)
In February 2020 I went on a beach vacation. Our family went to Cancun and enjoyed the warm sunshine, the refreshing pool and yummy food and drinks. We got to relax and spend time as a family, which was nice since we have a busy household. My husband works a full time job and my son, age 5, was in kindergarten.
At that time there were whispers of a virus ravaging whole towns and cities in China. Global news sources like CNN were reporting on it daily, and my husband who immerses himself in global social movements and politics was watching it grow.
We got home from our vacation on February 28, 2020. At that moment in time, I don’t think I, my husband, or anyone in the City of Calgary could predict the tsunami of change that was coming in the following weeks.
We watched the tidal wave of destruction, it was coming our way. First in China, we didn’t understand the gravity of the situation. By the time it hit Italy I was mortified at the reports. The virus collapsed their healthcare system, they were turning helpless sick and elderly people away at the hospital doors. Health care workers were forced to leave many to die.
Canadians all across the country watched, waited and prepared as best they could. Here in Calgary the grocery stores blew up. People were buying essential items in the dozens, this temporarily collapsed our food/supplies production line.
Toilet paper was the first to be sold out, many couldn’t find it in any store isle. Canned food was scarce also. Disinfectant wipes such as Lysol brand and bleach were a commodity only a few could get their hands on. Hand sanitizer, same story. Grocery stores who had click-and-collect services were overwhelmed as people didn’t want to step foot inside a store for fear of the virus. If you’ve ever watched an end of the world or zombie apocalypse movie, this was it - minus the guns and violence.
Slowly and shockingly we started to see the government take charge against this virus. They started making limitations on social gatherings. By Saturday March 14 our local provincial government announced that gatherings of more than 250 would be cancelled until further notice. They recommended social distancing, many companies followed suit by cancelling large conferences and meetings. They started encouraging employees to work from home, if they could. A national lockdown ensued provinces all across Canada were in similar pursuit. National sports leagues, such as the NHL, cancelled games and postponed the season" until further notice".
By Sunday afternoon, our government announced the closure of schools K-12. With my own child being in Kindergarten, it took some time to absorb the news. We were told the entire school year has been cancelled, and that he will start grade 1 next year.
Two weeks. That’s all it took, from the time our government asked us to be aware and prepared, to bracing the shut down of the entire economy. It was shocking with every new announcement, with every new restriction, with every social connection lost.
Many, including our household embraced the technology we had. My husband, an accountant, was lucky enough to work from home. I am off work on long term disability, I’ve been off work for over a year solely working on treatment and healing. I was already home and cared for my child during the days the best I could (given my disability). Both the Calgary Board of Education (CBE) and the Catholic School Board turned school into an online affair, and students have continued their education online.
We as a family have had to be extra careful amongst the shut down. I am a mother who is currently on disability. I went off work in 2018 due to an aggravation of my autoimmune diseases (Sjogren’s and Lupus). My disease started progressing at an alarming rate in 2018 and since then and currently (as of June 2020) I am working diligently with my health care team to try and get the disease progression under control. The most important aspect of that is medication. I currently take several strong immune suppressant drugs including prednisone (corticosteroid), methotrexate (chemotherapy) and azathioprine (immune suppression) amongst other medications. Because of the laundry list of medication I am on, my doctors consider me high risk. When I asked my doctors ‘how high risk’ they consider me, one replied with “consider yourself in the same bracket at the 70 to 80 year olds” This was alarming, considering I am 33 years old.
Our family self isolated right off the bat. We did not send our son to any dayhomes, and instead kept him home with us. We only did click-and-collect groceries so we didn’t need to expose ourselves any further, and I sent my husband out to get my prescriptions when I needed them. Other than that we spent time indoors, once and while we would go for a walk in our community, and we played every day in our own backyard.
This collective crisis has taught many a great deal about isolation, illness and what part our community and connections mean to us. Having our connections taken away from us has been devastating, life changing and extremely difficult for many. For many companies implementing working from home policies during the pandemic, the loss of seeing co-workers face to face was difficult. This spilled over into family and friendships as well. Collectively people were missing their families, they wanted to socialize, they wanted to freely give hugs and kisses, they wanted to connect. This was stolen from people during the pandemic, the ability to connect.
As a parent with a disability, I have to fully admit, this pandemic wasn’t hard on me. Sadly my illness fully prepared me for a lifestyle change like this, because I went through all of this in 2018 when I was no longer able to work due to my illness. I was forced to say goodbye to my workplace friendships. I was forced to give up the career I worked so hard for. I was so sick I had to cancel plans (often last minute) and on many occasions I missed seeing my family and friends. Having a disability that forces you to be at home is extremely isolating; and this pandemic forced many people in Calgary, across Canada and around the globe to have a front seat ticket to the world of living with a chronic illness.
I would never wish illness upon a fellow human, but I have to admit, it has been comforting knowing that healthy people can now understand those of us with a chronic illness, if only a little.
I am happy that this pandemic is short lived. Although it may feel like a lifetime to many, some of the changes that we have will not last forever. The company I was working for pre-disability and my husband's company are already starting to implement return to workplace plans. (June 2020)
In the midst of this pandemic emotions ran rampant. I did my best to keep emotional turmoil at bay. To be honest, I found solace by accident. It started as a byproduct of a project I started for myself. As the news swept the nation, I did what little I could do to protect myself. I pulled out my old sewing machine from under the stairs and dusted her off. She didn’t seem to mind the 8 year vacation down under, as she started up without complaint.
Masks were a short commodity. Health care professionals didn’t have the proper N95 masks in order to work safely. Consumers such as myself were not able to purchase masks, there was a worldwide shortage. I sewed myself a cloth mask to use in the event of emergency, if I needed to leave the house. I also sewed masks for my husband who was in charge of groceries and prescriptions. I then sewed masks for my parents who are both high risk due to autoimmune conditions, and my grandmother who is age 87 and is high risk.
News spread like wildfire in my circle of family and friends. I had many people reach out and ask if I was selling masks. The need was so great that I continued sewing. Thanks to my mother who is an avid sewer and cloth hordist, she was able to donate ample supply of 100% cotton material for me to make more masks. I sewed, ad sewed and sewed some more. Sometimes all day if my body allowed (rarely) and sometimes in 15 minute increments. I almost forgot at times that my body had a disability, I was so concentrated on helping everyone around me.
My sewing project was a huge success. By May 30th I had sewn and given away over 175 free masks to family and friends. I was able to mail them across canada for as little as $2.00 (4 masks) and my masks can be seen as far as Vancouver Island, British Columbia to Montreal, Quebec.
In the month of June I have been trading masks in exchange for the Sjogren’s Society of Canada Fundraiser. To date (June 15th) I’ve raised $500 for the charity organization.
In terms of what the world will look like in the future, no one really knows. This pandemic has changed us, every single person worldwide has been touched, we each have a story to tell. I hope that the resilience and bravery of many continues into the future. I hope we remember the essential services and support them in the aftermath of this crisis. I hope families re-unite stronger than ever (I know mine will). I hope new integrated ways of working, learning and being continue in the future.
Most of all, I hope that the world doesn’t forget how difficult and isolating it is living through a crisis. I hope able bodied people who are able to go back to their normal life, remember individuals with disabilities, like myself, who don’t have a normal life to go back to.
This letter and a couple masks were sign sealed and sent off to the Glenbow museum on June 15, 2020
Here is a link to my Sjogren's Society of Canada Fundraiser.
Below are some pictures of my mask making journey.
Thanks for reading along, I'd love to hear your experience during the pandemic and first lockdown.
Wishing everyone Health and Happiness,
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If you are newly diagnosed with Sjogren's be sure to check out my webpage here.
If you want to learn more about Sjogren's be sure to check out this webpage.