It is July, the seventh month of 2019, and I am ready for this entire year to be done. I’m not joking. Something drastic and stressful has happened every month so far. Not with me — I’m fine — but I’ve had multiple family members become sick, and…
Columns
“Dude, use your robotic arm to grab my leg!” Superstar blogger Shane Burcaw said these words to me when I met him a couple of weeks ago. Having read his books, and watched him and his fiancee, Hannah…
I wasn’t sure what to expect from this year’s Cure SMA Conference. I’d attended only once before, but I was too young to care about anything except for the service dog that I met and for which I subsequently longed. I knew there’d be…
Like many people, I love to cook. One of my favorite activities at Turnstone’s Adult Day Services program is the monthly cooking class, where I have learned to make all sorts of tasty dishes ranging from homemade peanut butter cups to grilled honey mustard chicken. I’ve also spent many…
The title of this column may be a tad deceiving — so allow me to clarify. My wheelchair only goes 6.2 miles per hour, and when you have an irrational fear of birds and are fleeing from a turkey that is chasing you, you realize that there’s nothing fast about…
Have List, Will Travel
It’s summertime, and that means holidays, road trips, camping, and hotels. Also, sunburns, mosquitoes, and probably dehydration. I’m kidding about the dehydration. My mom makes sure that I drink more water than she does. I’m mostly content to be in the house with the blessed air…
Thanks to the fine folks who handled my wheelchair at the airport a few days ago, I’m now writing this column while sitting in my bathroom seat. My mom is going to get my chair looked at, and until then, I needed to…
Imagine your soul as a canvas that illustrates the story of your life’s journey. Sprawled across an artistic medium, what would your scenery reveal? For some, it would be a river of peaceful waters winding into stormy rapids, set upon a base of weathered stone. For others, splashes of bright…
Between the wheelchair, the pristine white Keds, and the pink baseball hat, I stand out. But I can’t say that I’m used to strangers stopping me in the middle of a reception hall so they can compliment my writing. “So you’re the famous columnist!” Am I?…
I’m writing this on June 29, the 13th anniversary of my father’s death. Remembering Dad today is impossible without including Jeffrey in my thoughts. Following his death, our family was reassured by one sign in particular that he had wasted no time in reuniting with…
Recent Posts
- FDA approves high-dose Spinraza regimen for new, existing SMA patients
- Don’t underestimate the power of disability representation
- New study explores links between BMI and motor function in children with SMA
- What Eric Dane’s passing reminded me about living with SMA
- Reflecting on our SMA assignment and lessons from Dr. Seuss
