Covid-19: A Disabled Man’s Perspective

Covid-19 and individuals with disabilities

Covid-19 has effected the lives of virtually everyone on the globe. It has shut down businesses, overburdened the medical community and shortened the lives of those infected. We have never experienced a pandemic like this before. Although everyone is at risk for infection, the mortality risk is much higher for those with disabilities, the elderly and those with medical conditions. I fall into that category.

covid-19

Fear of Covid-19

Of course, I have concerns about contracting covid-19. If I require hospitalization, I will be there alone. I have always relied on my mom to advocate on my behalf during hospitalizations. I consult with her when medical decisions have to be made. The thought of being in the hospital, on a ventilator and alone terrifies me beyond any words I can express. My life would be in the hands of others with no support from those who love me. An able-bodied individual can easily communicate with a cell or computer. However, with my severe CP, I need these items brought to me and set up for me to use.

I have to face the fact that if I contract covid-19, I am at a greater risk of mortality due to my very low muscle tone and my lower lung capacity. My CP would make intubation difficult. I am 28 years old, not ready to leave any time soon. However, if it were my time, I would not want to be alone when that happens. I recently lost my Uncle, not to covid-19. However, I was unable to say good-bye because of covid-19. I know the struggle this has caused me, I do not want my loved ones to have the same struggle.

My fears are not different than the fears of many others. However, when you are in one of the risk groups, the fear can weigh a bit heavier.

Scenarios a Disabled Person Has to Consider During a Pandemic

I am fortunate in that I do not live in a covid-19 hot spot. In medicine, tough choices have to be made in times of crisis. If this pandemic continues to spiral out of control, there will be a shortage of life-saving ventilators in hot-spot areas.

If there are 30 people in need of a ventilator and only 20 available, doctors are faced with a decision. Who has the greater chance of survival? That is the question they answer to decide who gets the machine. When you are not on that list, you have a very different perspective.

It is very hard not to question your worth when on the losing end of such a decision. I understand the frustrations of Americans in the wake of these shutdowns. However, a haircut or a trip to the local pub should never be more important than forcing a human being to have to make a decision of who lives and who dies. I know that sounds dramatic, but if our hospitals become overburdened, this will be a reality. Recently, an ER doctor on the front lines of covid-19, died at her own hands. I have to wonder if she had to make such decisions. I wonder what horrors she saw first hand.

PPE

Covid-19 and PPE Shortages

Many individuals with disabilities rely on PPE for daily cares. What is a PPE? Personal Protective Equipment…such as gloves, masks, gowns and face shields. My caregivers mostly use only gloves in my cares. However, there have been times masks have been needed. I am very fortunate that I have a surplus to rely on.

I share my surplus of other supplies at the end of each month. However, I rarely give away my extra gloves as these are such an essential PPE for my caregivers and I. I also keep a box of masks in my supply cache.

Earlier this month, my mom and I did a contactless drop of gloves to a lovely lady in desperate need. She has MS needs wound care. Gloves and mask deliveries have completely ceased to those using home health care. This puts us at greater risk for life threatening illnesses and infections.

While I completely understand the dire need for PPEs in hot-spot hospitals, the complete cut-off for those receiving home health care is very dangerous. Staying healthy and safe at home is critical. People with medical conditions and disabilities are safer at home than having to be hospitalized with avoidable infections and illnesses. Additionally, avoidable hospitalizations will put a drain on the personnel and resources needed to fight covid-19.

I am so blessed to have two local ladies who donated masks for myself and my caregivers. However, many in my building do not have these resources.

medical personnel and covid-19

Medical Personnel

Recently, I read an article about physicians and nurses who have died of covid-19 in the past month. I have also watched videos of the struggle of doctors and nurses working the front lines.

PPE shortages are rampant in hospitals across the world. Medical personnel are reusing PPE and improvising with items like garbage bags. This puts their lives at a greater risk.

Because of that risk, their families are also at risk. Many doctors and nurses are choosing to not go home. Imagine facing death all day and not having the opportunity to go home to your loved ones for comfort.

In the hot spots, doctors and nurses are working extremely long hours and seeing an overwhelming amount of patients. Keeping the numbers low is critical to not overburdening the hospitals.

herd immunity and covid-19

Herd Immunity and Covid-19

There is an approach being used in Sweden that relies on the population to make decisions on their own in regards to self-isolation and social distancing. Basically, do what you want and keep the businesses open.

The goal is to spread covid-19 to the healthy to develop a herd immunity. It is working in Sweden, but not without consequences. Many of the reported 1500 deaths of the roughly 14,000 infected cases were elderly.

This is a tiny step away from the practice of “thinning the herd”. Basically, eliminate the weak and the old to make the herd stronger. Sounds like a great practice, unless you are a guy in a wheelchair with lower lung capacity. I would like to think I have value in this world to some degree.

gardening

Value of the Weak

I don’t consider myself to be weak, but in a herd, I am weak. However, does that lessen my value in this world? Can I still make an impact to those whose path I cross?

I have a neighbor who is more affected with a disability than I am. He is elderly and uses oxygen assistance. However, from his wheelchair and via the hands of his caregivers, he creates the most beautiful gardens. He shares the crops with his neighbors and shares the beauty with everyone around him.

This may seem like a small impact, but he sends ripples everyday of every year. He is wise and generous. His positive attitude and sense humor can bring an instant smile. His lessons of gardening will carry on through his caregivers.

What would life be like at O’Konski without him? The gardens would die. There is minimal ground maintenance, so the flowers and the beauty would soon die. The joy that this has brought over many years would be no more.

I could type forever about all the “weak” people who have made a tremendous impact on my life. There was Richard who had ALS and his writings encouraged me to not let the little things get to me. I learned to continue to write even on the bad days. There was Jiffy, my beautiful neighbor. Even in the depths of her dementia, she still brought a smile to my face and laughter to the building. If Jiffy never existed, my mom may have never known about my verbally abusive caregiver. There is great value in the life of the weak…

covid-19

Final Thoughts on Covid-19

I could ramble on but I guess I will wrap it up with this…my core belief…every life is valuable. Do not be so quick to discount a person’s value because they are poor, sick, disabled or elderly. Open your heart and your mind before opening your mouth. It all goes back to the words our mothers instilled in us, treat others the way you wish to be treated.

Until next time, Be Well…Be Safe…Keep Rollin’ and Keep Smilin’!

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