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How COVID-19 Has -- and Hasn't -- Changed My Life With Cerebral Palsy

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March 15, 2020 was the last time I left my house. My husband and I attended church services that morning, unaware that everything would change the next day. That was the day the coronavirus social distancing began and has now escalated to complete social isolation. We cannot be in a group outside of the ones we live with. That leaves me, my husband and our cat.

I know many people are getting frustrated and bored. I see them walking past my front window, enjoying the sun while making sure that no one else is around. I listen to my husband’s reports of conditions in grocery stores and other places people need to go from time to time, of the empty shelves and floor markings designating the six feet people are to stand apart while waiting for the checkout.

It’s very true, the entire world is under tremendous pressure and stress. Millions are home without jobs or income. I am not minimizing anything. I am sharing a perspective that most people have never considered before. Maybe, given the circumstances we face now, people will take the time to listen.

Before this started, my usual week was spent at home with the exception of Sundays out at church. I have cerebral palsy, osteoarthritis and a few autoimmune disorders, combined with escalating chronic pain and fatigue. I cannot walk very well even with my walker, and my kitchen and laundry area are now inaccessible for cooking and doing laundry, so my husband does it all. I do manage to bake a bit with his assistance. I have home care nurses in once a week for a shower assist, but who knows how much longer that will last.

My days are spent alternating time between sitting, walking, reclining and icing my knees and taking scheduled medications. During sitting times I write, read, play computer games and crochet. Each day is a carbon copy of the next. This would still be true if the COVID-19 stay at home and social distancing directives were not in place.

Some Practical Advice

Those of you who are bored and lonely, please think about people in your community who are housebound all the time because of illness and disability and find ways to help. Call or text, leave a note at the door with offers to pick up and deliver groceries and prescriptions, put their garbage bins and recycling bins out on collection days. Call or text to have a chat. Personal connection is a human necessity and hearing another voice and having a real conversation uplifts soul and spirit.

When speaking to a person with an illness or disability, ask: “How can I help you?” “What can I do that will make things easier for you right now?” If the person is reluctant to answer, list some of the examples I have given above.

Access to Medical Care

Along with the stay at home order, there is a social distancing order. It affects all areas of life, but the area that has the most impact for people with disabilities and/or chronic illnesses is access to medical care.

I live in a town of 2,600 people. We have a medical clinic and I am blessed to once again have a GP or family doctor. The social distancing order has closed the clinics to patient visits. My only option is to call the clinic for advice. I cannot see my GP and new prescriptions are also requested over the phone. Prescription refills are called in to the pharmacy. I cannot go to our local hospital as they will only admit those who are in critical. Like many other hospitals in towns around the world, it is very quiet with staff prepared for the spike in cases that have not developed yet. We actually have zero cases of the virus in my small town and for that I am very grateful.

My GP was working on sending urgent referrals to specialists for me. Those are on hold now, indefinitely. It doesn’t matter that my pain levels are escalating to extreme levels again. It doesn’t matter that every step is a huge struggle. I am forced to cope at home. I keep moving as much as I can despite my kneecaps scraping along my femur bones. There is no access to physiotherapy or massage therapy. I finally found someone to cut my hair at home (as I can’t get on and off the salon chairs anymore) but the social distancing restrictions have put that on hold.

Do not misunderstand, I’m not complaining, but simply sharing what my life is like. I am not looking for your pity or your sympathy. I am hoping to create awareness and understanding for those with disabilities and chronic illnesses.

COVID-19 Concerns

I also fall into the category of being immune-compromised and my lungs are very weak. That puts me into the high-risk category if I contract this illness. I am doing all I can to nullify that possibility and am fortunate to live in a rural setting, which makes it a lot easier.

Once symptoms begin, people must stay at home and self-quarantine for 14 days while symptoms progress. This is stressful for anyone, but having to call a number to relay progression of symptoms and then wait for permission to call an ambulance or go to the hospital can cause extreme stress for those with disabilities and chronic illnesses. I cannot always gauge the severity of symptoms as they become masked by the symptoms of my disability and autoimmune syndromes. I’ve always been concerned that I may miss a symptom that is unrelated and needs attention, but this adds a whole new level of concern.

Stories out of Italy and Spain reveal that doctors and nurses had to decide who was put on a ventilator and who was left to die. I live in Canada and a question is now being asked in the province of Ontario: “Are disabled people denied COVID-19 care?” Will our lives be deemed less worthy of saving due to our disabilities and the medical support we need to manage them? Will an able-bodied person receive treatment because once they recover, they will be “contributing members” of society? Is there an agenda to rid the world of the elderly, the weak and the disabled… ah, but now I dip into “conspiracy theories” — or do I?

Put yourself in my situation for few minutes. How would you feel if you were not guaranteed the same care and treatment in the hospitals should you contract COVID-19 and have it progress to severe levels?

A Few Final Thoughts

I applaud all healthcare workers who are on the frontlines treating COVID-19 patients fighting for their lives. Your sacrifices are not taken lightly or for granted. I caution you to speak up if managers and department heads start pressing you to exclude certain patients from treatment. I fear there is no end to the slippery slide downwards once certain lines have been crossed.

As human beings, we need each other more than ever. Please reach out to the elderly, disabled and chronically ill people in your neighborhood, community, town or city. Life is of inordinate value. Each person is precious and unique regardless of how they look on the outside or the things they can or cannot do.

No one knows if life will ever go back to the way it was prior to March 2020. Each day is precious, so I encourage you to make a difference not only in the lives of your family members but also those who may not have family or friends.

For more on the coronavirus, check out the following stories from our community:

Photo by Sharon McCutcheon on Unsplash

Originally published: April 12, 2020
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