“Resilience is accepting your new reality, even if it’s less good than the one you had before. You can fight it, you can do nothing but scream about what you’ve lost, or you can accept that and try to put together something that’s good.” – Elizabeth Edwards
CONFESSION: The last confession of the year and it is difficult. I have reached that point in my life where my disability is becoming “more” of a disability. I have a long history of being fiercely independent to the point where that strength is becoming a barrier. With over 60 years of the polio virus ravaging an already decrepit body, aging is complicating “independent living” while making retirement extremely difficult.
As we approach New Years, I traditionally like to review the past year to see where changes need to be made. This keeps me from getting trapped in time while recognizing where I have to adjust to keep moving forward without threatening my independence. This includes adjusting beliefs for an ever changing environment, reviewing my financial status, developing a New Years plan, identifying “potential” major purchases while shaving off expenses no longer needed. With retirement budgeting becomes even more important due to the nature of disability related costs, never under-estimate the importance of workplace extended health coverage. New wheelchairs are not cheap (about $7000 for the one I just purchase) so I should be good in that area for the next five years.
New Years is a time for reflection and adaptation. Almost two years into a pandemic has really called for some major adaptation. Of course adaptation requires more than “thought” otherwise it is simply day-dreaming. The reason for self-reflection is “change”, as Aaron Beck explained it, with his 3 A’s process (Awareness, Answer and Action). A prime example, for me, I was well Aware of the negative health aspects of smoking and it took me fourteen years of searching for Answers until I finally was able to take Action resulting in quitting tobacco products in 1998.
I have reached a point in my life where ten hours in my wheelchair and sometimes, when needed, stretch that out to twelve hours and I am done. The longer I sit in my wheelchair the more blood pools in my lower extremities leaving my feet looking like the Pillsbury Dough Boy. One of my physical issues with Post Polio Syndrome is known as “polio feet” so after ten to twelve hours it is time to get into my recliner. And, based on a comment from my doctor, this is not a Brick recliner special, but a Golden Technology with Zero Gravity (a gyro technology designed to raise your feet higher than your heart, yep, “I wouldn’t have thought of that”).
Before I get out of my wheelchair and into my recliner (usually around six in the evening) I try to make sure everything I need to do is done otherwise I am ambulating around on my knees. I am down to one spot in my condo where I can get back into my wheelchair by lodging my wheelchair between my bed and the wall. Fifty years of walking on my knees has slowly eroded the last of the meniscus so it is bone on bone when walking on my knees. Having to push my wheelchair from my recliner to my bedroom and get back into my chair is a painful process, which is why I have everything done before kicking back in the recliner. Anything happening after 6pm, particularly in the winter, is usually a no go for me.
I have numerous friends who don’t really believe in much TV however many of them are thinking 80’s TV which was really, at the time, was more about marketing rather than “social statements”. TV today carries a lot more messaging on social issues. Case in point, I have started watching US of Al, a half hour sitcom, that uses humour to stress the importance of helping get the Afghanistan who worked with foreign troops out of the danger posed by the Taliban. This series came on air just before the Americans pulled out of Afghanistan so the humour takes on a much blacker topic now. I was curled up in my recliner watching it last night when Al collapsed in, what was eventually, diagnosed as a panic attack. Long story short, the episode focused on something I am very familiar with, suppressed memories.
I will be very happy to see 2021 in my rearview mirror. This pandemic has certainly dredged up many of my long buried memories. It was much easier (on a subconscious level) to bury the memory of a 9 year old (me) watch as they moved my 8 year old roommates body onto the gurney to go down to the morgue. Filed and forgotten, all total 4 friends who never saw their 11th birthday and one (Donny) who made it to 16. These are the types of things one buries while continually hearing from the healthcare system of the day make comments about shortened life spans. Al was experiencing “suppressed memories” from his childhood and everything he was exhibiting was classic denial described in the book “The Invulnerable Child“, a required reading book for therapists back in 1988.
My few moments of memories were interrupted by a phone call from a family I had worked with a number of years ago. Their four year old son had died two weeks before Christmas due to a rare brain cancer and needed a shoulder to lean on. That’s what I do so for almost three hours I listened, that was all they wanted and, to them, I was a safe shoulder. I guess I can’t really complain when others have it so much worse.
Have a Happy New Year and you will hear from me again in 2022…
A Poster Child's Perspective 