…tl;dr: that’s me in my wheelchair — this is one of my favourite photos of me and my kids… Batman, Robin, and Sparrow.
In 2008 I was asked by the local historical society to put together an article regarding the 90th anniversary of the 1918 Influenza Epidemic, and its effects on our local village. For research, I used the extensive archives of our local newspaper.
What I found was remarkable.
Using the newspapers’ archives, I could trace the disease as it spread towards the region thanks to ads for cold and flu remedies that were published before people knew there was a plague amongst them, when The Flu seemed like any other flu. There was even a small wire copy story from China that spoke of a “mystery plague“, and a missionary finding bodies in the streets of Beijing, published almost a year before the disease came to Canada.
Looking back, the ads and the wire copy were hints of the tragedies to come that could only be deciphered in hindsight.
Reading over a years worth of my own Facebook updates, I can now see something similar in my own life. Early in 2016, I had begun to fall regularly, I also started to lose weight, and get weaker. In the beginning, according to my updates, I blamed it on the diabetes, and various injuries, and the kids bringing home a virus.
It started slowly, a couple of months after first falling over and giving myself the first of three major concussions, I was having a very difficult time with stairs.
Three months after the initial fall, getting off the couch was nearly impossible, I was walking with a cane, and I could only get up stairs with assistance. I was actually driving to fast-food restaurants to use their disability-friendly restrooms, because getting upstairs to my bathroom had become nearly impossible.
And four months after my first falls, I was in the hospital, trapped in my bed, I couldn’t feel my arms or legs, I was so weak I couldn’t roll over by myself, I couldn’t dress myself, I couldn’t even sit up by myself, and I had lost 80-pounds.
…I was being told I there was a very good chance I would never walk again.
At the time my reaction, or lack of one, both in ‘real life’ and on Facebook, to each new situation all made some sort of sense. I would lose a physical capability, or a physical activity would become more difficult to perform, and I would adapt to the new situation. The adaptation would work, problem solved, on to the next one.
It was like someone in 1917 reading a small blurb about an unknown plague in China would have no reason to think, a year later, 50,000,000 would be dead worldwide. Or how something that happened halfway around the world, could explain why so many local families had to be quarantined a year later.
But, looking back on six-months worth of Facebook updates (it’s basically a 7000-word diary of my experiences), each new situation becomes an obvious reason to see a doctor, to at least recognize that something major was happening… only the end result gives clarity to each individual incident.
When I was first admitted to the hospital, in April, 2016, I was a medical mystery. My nervous system was shutting down, and the only real clue as to what was going on was my creatine kinase (CK) level was extremely high:
“A CK test may be ordered when muscle damage is suspected and at regular intervals to monitor for continued damage. It may be ordered when a muscle disease (myopathy) such as muscular dystrophy is suspected or when someone has experienced physical trauma… . Testing may be ordered when a person has nonspecific symptoms, especially when taking a drug or after an exposure to a substance that has been linked with potential muscle damage.”
It’s relatively common to have a high CK when someone experiences Chronic Kidney Failure (CKF), which had happened to me in 2013, thanks to a combination of insulin and Lithium.
Six weeks after being admitted to the hospital, and ten days after being put on dialysis, they diagnosed me with having “severe uremic neuropathy” and “myopathy” due to a combination of the CKF and the medication I had been put on to replace the Lithium that had been partially responsible for killing my kidneys.
The four months of weight loss, falling, concussions, weakness, loss of feeling in my lower body and arms, was due to Epival, a medication I had been on for almost four years before it turned on me.
Within a few weeks of the diagnosis, and changing the Epival for Abilify (and a LOT of hard work in Rehab), I had regained the ability to walk, if only with a walker. A week after that and I was walking with two canes and actually getting up and down stairs by myself, ten days later it was one cane, then I was well enough to be discharged. Two months on my own, and I was walking with no help.
…it has been a year since my body fell apart, and nearly eight months since I was discharged from The Rehab Centre, and I’m still learning how to walk again. I can get up and down stairs, I can walk around the block, I was even healthy enough to undergo a kidney transplant in January — which is something else I’m recovering from.
In total, including the time it took to recover from the transplant, I spent nearly half of the past ten months in the hospital.
Looking back over the Facebook health updates I posted last spring, it’s easy to see how blind I was to what was going on. Just like the people in my region were blind to the plague racing towards them. But none of the original symptoms — the falling, the general weakness, the weight loss — were enough for a diagnosis.
I did go to the Emergency Room on a couple of occasions, and even talked to my family doctor before finally being admitted to the hospital in April. But the doctors I saw thought it was related to the diabetes, or to the falls themselves. Without finally, and completely, falling apart, they never would have figured out how to put me back together.
…anyway, this is one of my favourite songs:
“Love Kills”, by the Circle Jerks, from the ‘Sid & Nancy Soundtrack‘ (1986) & ‘VI‘ (1987)
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