I’ve been covering larger issues and waxing political the last few weeks. Today I’d like to get personal. I hope that by telling what’s going on in my life right now, I will get some of you to share your own stories.
The most challenging part of explaining my physical issues to other people is the fact that they’re not consistent from day to day. Quick rundown—after being hit by a car on my bike in 2010, I have lingering spinal pain from multiple fractures, I have a rod and 8 screws in my left arm, and my left shoulder was heavily damaged so I can only sleep on one side. My right hand is reattached. It was almost completely amputated and degloved—that’s as gruesome as it sounds. The flesh was ripped from the bones and all that stopped it from being turned inside out was my leather cycling glove. I had traumatic and anoxic brain injuries. With all that, as long as I’m wearing long sleeves, you can’t tell there’s anything amiss.
Some days, especially right after a massage, my hand is perfectly fine. There is always an annoying numb spot between the wrist bones on the outer side, but there are days when it moves perfectly and I don’t notice any problem. Other days, after a big work project or other stressor, my hand is so numb that I drop the cat dishes in the kitchen and it’s hard to sign my name.
Some days my back feels perfectly fine and I enjoy almost normal activity—there is always a sense of “be careful not to overdo it.” Other days my motion is restricted and I can’t move at all without pain. I have a rib head that rests in a heavily scarred socket and it sometimes slides out, resulting in pain and limited mobility. I also have what I call “The Clamp,” persistent nerve pain that can flare under stress or intense activity. When I trigger it, it feels like a metal clamp gripping my spine.
Some days my brain is sharp as Ruth Bader Ginsburg’s. Other days I struggle to remember things and I make decisions omitting giant pieces of information, like once I referred a client to another contractor to bring him onto a job with me, having forgotten that he stiffed me on a job and we no longer work together. (He stiffed me again.)
The timing of my various flare-ups can usually be correlated to a cause, and I often engage in activities knowing they will cost me. What really blows, though, is when a flare-up happens at the worst possible time, when I’m enjoying a highlight experience and it gets me unexpectedly. Anyone with a variable condition like mine will recognize this and know that Murphy’s Law governs our flare-ups much of the time.
My rib was stable for 2 years and I thought that problem was over. Then my home-based work got thin and I started driving deliveries for a multi-restaurant delivery service similar to Uber Eats. I know my limits and only scheduled 3 or 4 hours at a time, never 2 days in a row. Still, after just one week of all that getting in and out of the car, my rib slid out of place. I was flattened for 3 days. During the 4 months I did that job, I missed a week of work every month due to rib displacement. The chiropractor gets it back in place, I recover, and we start the cycle again.
Last summer I went on my usual long bike trip on Vancouver Island. By the time I got to my Happy Place, the Free Spirit Spheres hanging treehouse resort, I had ridden a ridiculous number of miles and I was tired but feeling strong. Until the first morning when I prepared to go into town and picked up my pannier bag to carry down the spiral staircase to the ground. It felt like I’d been stabbed from behind. The rib was out, farther and more painfully than ever before. I carefully laid down on the bed. It took 3 hours to get up the strength to walk to the office and ask for help. My trip would have been ruined if my hosts hadn’t gone all out to care for me, serving me meals with wine in my sphere—definitely not part of the standard guest package.
I thought that was the last of the rib nonsense; I quit the delivery job in September and eliminated that stressor. But just this last weekend, I had a friend come up from Portland on the train so I could teach her how to brew my artisanal biodegradable laundry soap. I call it Glurp. We got up early and started boiling 5 gallons of water, 2 large pans at a time. We added the dry ingredients and I demonstrated the paint stirring attachment on my power drill, then let Carolyn try it. As I turned back toward the stove, it felt like a fist jammed between my ribs and squeezed the air out of my lung. I was down for half an hour, then for the rest of the day, I struggled to participate in a scaled-down version of the day we had planned.
It’s always when you really need to be at your best that the flare-ups take you down. It makes sense that flare-ups would act this way—when your energy is ramped up and adrenalin might suppress your early warning signals, it’s a perfect recipe for a failure of your normal defense system. You think you can push a little harder “just this once” and it will be okay. Sometimes it is; often it isn’t.
Tell me about a time recently when your condition flared up and spoiled something for you. It’s okay, this is a safe-to-complain zone. We all know we will resume stiff-upper-lip mode as soon as we walk away from our screens.