Knowing when to accept help and when not to is a regular challenge for those of us with progressive diseases. “Do you want me to push you down the hall to the kitchen?” my personal care attendant, a family member, or a friend might ask. This…
Little Victories - a Column by Matthew Lafleur
A large, old oak tree used to grow outside my bedroom window. A few weeks ago, it fell during the bluster of Hurricane Delta. The tree crashed down while I was less than 20 feet away, yet I slept through the fall, none the wiser. (If a tree falls outside…
How Progress Is Measured
I intentionally fell off the treatment table. A metallic taste filled my mouth as I thudded onto the matted floor with a crash, looking less like a superhero and more like a marionette whose strings were cut. My fall was neither steady nor…
I have no idea what I’m doing, I thought as I turned my head from side to side in an effort to provide the photographer with a variety of angles so that he might have a viable shot to work with. He had asked…
Many trees stand stoically on my family’s property, one of which I pass each time I ride my recumbent trike. I take notice of its bark and branches more than I have with any other tree in my life. I only recently found out the name…
A Heart Like a Rabbit
Moist, squelching sounds filled the otherwise silent room as the sonogram of my heart was being conducted. I was lying on my left side on the slim hospital bed, at my yearly cardiovascular checkup. One of the most important tasks to ensure the wellness of…
I have a confession to make: The part of my Friedreich’s ataxia diagnosis I used to be most grateful for has now become something I question. Is it a good thing that while the rest of my body breaks down, my cognitive function remains the same?…
It wasn’t a comfortable feeling. With every press of my physical therapist’s tiny handheld pump, the edges of a small plastic cup seemed to pinch my skin a little more tightly. I had several suction cups placed on my arms, hips, and legs.
No. Thank you for reading this week’s column. *** Just kidding! I want to unpack that question, because it is a valid one. Plus, the answer has a pretty interesting backstory. I am a columnist without any real scientific training,…
Moving Past Unrequited Love
“It’s just hard to be around you,” she told me. She looked down. She hated these harsh words, too. Over time, I’d learn to accept them and even be grateful for her. One day, I’d appreciate how she didn’t sugarcoat her message.
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