"The only way to make sense out of change is to plunge into it, move with it, and join the dance." - Alan Watts
I haven’t posted since late 2010, silently disappearing in the hope that life would resume to the way I knew it in just a few weeks, perhaps a month at the most. I stopped my blog anticipating that I could return as the “Walking Quad”. Instead of a return to what I embraced as “my life”, I have been confronted with physical changes, each one slowly removing my ability to walk and erasing how I had come to define myself as, “Walking Quad”. Through the encouragement of a friend, I am resuming my blogging in hopes that my current journey will assist others and perhaps prepare them for changes that life throws our way. I know all too well that life can change in the blink of an eye but for some reason I was totally unprepared for the changes that were about to unravel. After 15 years of walking post spinal cord injury (SCI) I had deluded myself into thinking that life would stay static. It has not. The decline in my ability to walk came from several unlikely sources. I have hidden my new reality from many but through my friend’s encouragement believe that the twists and turns are best shared and not hidden.
I lay down to sleep one Friday night and found the room spinning. It felt like I had one too many drinks but without the alcohol. The lack of balance and spinning continued and in fact worsened over the weekend. At the beginning of the week I saw my family practitioner who said, “It will get better, it will stay the same or it will get worse” to which I proclaimed, “Isn’t that anything in life?” I was sent to an ENT who said yes I had vertigo but her concern was I had had a stroke, a brain aneurysm or some other neurological issue. None of this was SCI related but my life indeed began to spin out of control.
Simply standing became an issue, let alone walking. I had to stop driving, began using a PCA for safety, had to halt all air travel and limit my business trips. The vertigo lasted from August to mid-November. The bouts were less frequent but would return out of nowhere anytime I had a virus or simply for no reason at all. Eventually, I had a diagnosis and something to blame the vertigo on. Unfortunately, there is no treatment, and it can strike at any time and my ability to walk becomes greatly compromised. My crazy Walking Quad gait became crazier. Clearly, my quality of life has been significantly affected.
Working with my physiatrist, we decided that the time to transition to a wheelchair had come. I went through a seating evaluation, carefully considered my options in manual wheelchairs and placed a pre-authorization with my insurance company. My wheelchair request was met with a denial for key components of the wheelchair. Appeals were filed, denied and filed again. I got nowhere and thus have continued to walk. The medical necessity was not challenged, simply clinical guidelines that seemed arbitrary and convenient for denying the expensive equipment ruled.
In early February, I fell down 4 steps, landing hard on both knees. An ER visit, tons of x-rays, bracing, emergency trip to an orthopedic surgeon, MRI and more doctor’s visits revealed that walking for 17 years post injury had taken a toll on both knees. I now find myself a candidate for two total knee replacements. The orthopedist asked how I was still walking to which I informed him that lack of sensory isn’t all bad.
My new journey has begun, one of transitioning from walking to being a wheelchair user again. I have mixed feelings; moments of anger, anxiety, frustration and acceptance. As my 80 year old father says often, “getting old isn’t for sissies!” He is absolutely correct.
I invite you to join me on this journey of change. I have decided as suggested by Alan Watts, to plunge in, go with it and join the dance. It may not always be pretty or encouraging but it will be brutally honest and real.
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