Get Back Here! It's Only a Flesh Wound!!
All I want is to bake chocolate scones (these in particular) with a spare batch, slated for a friend, perfectly sized to fit in a winter themed tin adorned with cartoon penguins. In an ideal world, I would hop in the car and deliver these by hand, having whipped them up in the hour outlined in the recipe. Hugs would be exchanged. A turkey would be greeted. Literally. That’s not some underhanded insult.
The glaze of ice that’s befallen Northern Michigan isn’t what’s holding me back. Logistical roadblocks such as these are expected this time of year. Nope, what stands between me and piping hot scones is the lack of stamina to pull them together paired with unexpected spasms and paralysis overcoming me at the most inopportune times. These aren’t the mild, kick back and watch YouTube varietals either. They feel like my insides are being ripped from my body while I lose a wrestling match with the sandworm from Beetlejuice.
Watching the discomfort of others as I writhe in pain only adds to the unpleasantness. I get it. Witnessing someone you love scream in agony while twisting uncontrollably shows on your face no matter how stoic one attempts to remain. I’ll never forget the first time I landed in the ER with spasms and realized how dire things must be by the look of abject terror on my mom’s face.
My desire to protect those I love from having such images etched in their brains makes for a fairly small social circle when these attacks flare — which brings me to my gripe. Within the disease and disability as a badge of honor community exists a trope that you should still go out and LIVE YOUR LIFE despite [insert most wretched of circumstances here]. I stumble across these only periodically, as I mostly avoid such tripe recognizing it for the digital landmine it is. When I come face to face with such incipit suggestions, my immediate reaction is to tell the invisible stranger on the other end to fuck the hell off. Charming, I know.
Here’s why. If you’re capable of living some version of a normal life, one of two things is true. Your condition is not as debilitating as what I currently face OR as you seem to think it is. To this I say, how nice for you. We’re not the same. I can handle slurred speech and wobbly movements in public. Friends in the 70+ age bracket tell me my cane is there to beat back the throngs of suitors, added mobility is a bonus.
image credit: Monty Python and the Holy Grail (1975)
