I remember getting to the pool early one summer morning before swimming lessons began. I wasn’t a swim teacher per se; I was more of a teacher’s assistant. The head instructor had me and the instructors my age do a lifeguard training exercise.
“Well look at that,” the doctor remarked, obviously impressed. The wonder in his voice made me grin a little bit. Any positive physical change with progressive Friedreich’s ataxia is a little victory. I had just swung my legs off the…
My alarm goes off at 6 a.m. I open my eyes to my service dog, Zeego, who still has his eyes closed. He is definitely not ready to get up yet, but I am. With a hand on my SuperPole for balance, I…
Editor’s note: This week’s column is co-authored by Kyle Bryant, founder of rideATAXIA, spokesman for for the Friedreich’s Ataxia Research Alliance, and co-host of the podcast “Two Disabled Dudes.” A few weeks ago, I wrote “I’m Confident rideATAXIA Dallas Will Happen in November,”…
“Forty needles! I think that’s a record over here!” I was lying on my stomach on the adjustable table as my physical therapist said this with a laughable mix of pride and wonder. One of the treatments he uses is dry needling. Neither…
“Look at the mirror on the wall. Can you tell me what letters you see?” I sat there in the darkened optometrist’s office with my face pressed forward into a strange head-shaped contraption. I looked up at the mirror and saw the reflection of a bright…
The clanky metallic sounds are what I remember most. Pap-pap! And then a small sound of straining as someone’s body weight shifts as they are dragged forward. Whenever that sound echoed down the high school hallways, I knew what it…
About a decade ago, I read a local news report about a pizzeria being taken to court because it was inaccessible to people with disabilities. Opened in 1990, this house-turned-business sat directly across the street from my college campus. I read about the…
The original date for this year’s rideATAXIA Dallas was March 28. This would have been my fourth year participating in the event. RideATAXIA is a day of bike treks for three skill levels — 50 miles, 25 miles, and 4…
I’ve been thinking a lot about identity lately. Who am I to myself? To others? Is Friedreich’s ataxia fundamental to who I am? Would I still be me without that rare diagnosis? Maybe I can only…
It doesn’t make sense to be this fragile, I thought, as my stomach dropped and I wanted to … fight? Punch a wall? Sob? I had no logical reason to be upset. Yet, when I overheard a longtime friend on a phone…
The day was cruelly beautiful. It was the first time I had ventured out of the house in over a month. I gazed out my van’s windows as tree branches and fields of grass whizzed by — vibrant, springtime green. The sky overhead was crisp…
About a year ago, I wrote a “Little Victories” column about the 2018 Netflix movie “Bird Box.” I was struck by its message that people with disabilities were best able to survive an apocalyptic scenario. Although the real-life coronavirus…
On an otherwise typical day of my self-quarantine, I careened to the side of my wheelchair and couldn’t stop. I wasn’t sure if the culprit was a coughing fit or an inability to correct my balance. After the initial thud and the…
Focusing on times of plenty and excess amid the COVID-19 pandemic seems foreign, or even rude. However, this calamity and all the pain it’s wrought cannot be all we see. Its prison walls are not opaque, just murky. We must look beyond them, look past…
I’m really fortunate. My life hasn’t undergone a drastic change even though I’ve rarely left my house in three weeks because of the COVID-19 pandemic. I work remotely and don’t drive, so I’m used to spending most of my time indoors. Since I am…
Long before COVID-19, a little girl named Eula walked to the end of the road to catch a school bus. It was 1935, so her bus ride to the small school in South Louisiana lacked the conveniences we take for granted today. For example, the…
It’s finally happened: the first outbreak within my parish (or “county” for you non-Louisiana folk) has been reported at the time of writing this column. While this pales in comparison to the number of outbreaks in Seattle, New York City, and even New…
At my latest physical therapy appointment, I was out of my wheelchair and on the floor mats, struggling to maintain a “table” position. Mastering that position is the beginning of working on crawling more like a toddler and less like a mortally wounded soldier on the battlefield.
I was giddy that day, a month or two ago. So much so that I texted a friend, “Do you ever feel like everything is coming together, falling into place?” I received a text back. “Every day.” I chuckled at this response and rolled…
My teacher and my best friend’s mom talked amid the gaggle of parents picking up their kids from middle school. I was within hearing distance as they spoke, but neither one noticed. I remember my teacher remarking that the woman’s son and I used to do…
I saw one of my middle school teachers the other day. Two decades have passed since I was in her religion class. She saw Zeego, my service dog, as he curiously sniffed around the occupational therapy clinic where my friend Will works.
The sky turned pinkish and the clouds became bright blue as the Louisiana sun reached its western-most point and began to retreat from this summer day. It was five years ago. My mom’s friends had brought their 7-year-old nephew over to swim. I was playing…
I was the weird kid who asked my mom to fix me a plate of spinach as an after-school snack. Most of my friends only ate spinach to appease their parents and earn the right to dessert. Don’t get me wrong: I love cookies and cakes probably more than most…
My physical therapist Kevin pushed a sofa to the middle of the room. I positioned my wheelchair next to it and transferred onto the soft cushions. Sitting there, I rolled my wheelchair — my safety net — away from me. It’s strange being away from my chair since it’s been…
I looked around and grinned. Our individual values are upheld by the people with whom we surround ourselves, and that made it incredible to be there. The corner office on the 20th floor of a building in downtown Philly was a far cry from home. The…
Before I knew it, I was face down on the tiled floor. When I started to fall forward, seated in the handicapped-accessible shower, my arms made a last-ditch effort to grab onto the bench. This plan failed. Without my arms to impede my crash, my forehead…
I was grateful to be around my large extended family at our yearly Christmas party. Zeego, unleashed in the huge building where the festivities took place, sniffed beneath the rows of white plastic tables. I had hoped that he would bring some holiday…
I learned a new word this year: “mFARS,” which stands for the modified Friedreich’s Ataxia Rating Scale. The mFARS measures the overall effect of Friedreich’s ataxia (FA), rating abilities such as upper body function, lower body function, speaking, and swallowing. Unaffected functioning scores a zero on…
“The Zeego Tales” track the wonders of my life with my service dog, Zeego. The day Zeego decided to make a break for it, the autumn air was unseasonably warm. I should have noticed that something strange was about to happen. But in the moment, I expected an…
It was a good day at physical therapy. I was exhausted from doing leg, arm, and back stretches with the help of my physical therapist. I sat up on the matted floor, legs stretched out in front of me. “Look,”…
I took off the hood that blacked out my vision and covered my face. My friend Ryan and I were in a dimly lit room. We had 60 minutes to reunite with our friends and figure out how to unlock the exit. When time was up,…
“The Zeego Tales” track the wonders of my life with my service dog, Zeego. I am in my new standing frame, clumsily clicking on my laptop’s keyboard. Zeego, my service dog, is sleeping beneath me. The shades are open in my bedroom and sunlight is flooding in,…
When I was 16, I searched the internet for Friedreich’s ataxia (FA) for the first time. I couldn’t ignore its effects any longer, and I was ready to learn about it. I assumed the treatment or the cure would be expensive and unpleasant. When I discovered…
Is this even worth it? The noisy confusion was almost comical. Luckily, I was next to some friends in a corner of the hotel lobby. Taking a group picture of people with Friedreich’s ataxia (FA) was complicated. The majority of us were seated in…
Out of curiosity, I ran an online search of “Kyle Bryant,” one of my best friends. I call him the poster boy for Friedreich’s ataxia (FA), and the search results seem to agree. I scrolled past links to his employee page at the Friedreich’s Ataxia…
A friend and I recently had an honest discussion, broaching topics like depression and the fear of death. I felt relieved afterward. My friend, however, presumed I was in despair, as most people seem to think that sad topics should only be discussed during difficult times. In the…
As I type this column, I’m standing about 5 feet, 11 inches tall. Honestly, that’s a couple inches taller than my natural height. The platform for my feet on my new standing frame is raised, resulting in a slightly exaggerated height when I…
Being the best man at a wedding had its challenges. I am not comfortable being the center of attention, so it was not relaxing to give a speech at the rehearsal dinner or go down the aisle during the ceremony. But I have known since college…
“The Zeego Tales” track the wonders of my new life with my service dog, Zeego. The sound of rushing wind and the rumbling of turbines intensified as I felt the front end of the plane turn skyward and we left the ground. The plane departed at…
Serena Lawrence hired me as a columnist for BioNews Services. I badgered my friend Frankie, who writes the column “Fighting FA,” into recommending me. She gave my name to Serena, who walked me through the onboarding process. I was touched by…
My phone alerted me to a text message. “Would you be devastated if we canceled this week?” It was my friend Will, canceling our weekly appointment yet again. I wasn’t upset, but understood the back-and-forth banter of our friendship. I sent…
“But the bird fly! I want jump off the roof!” My 3-year-old mind believed this totally. I stamped my tiny shoe. I had made up my mind and I was ready to take action. My mom had discovered some old feather dusters as she…
“The heart really is an amazing machine,” the technician mused in the dim examination room. I was shirtless on the sterile white bed with seven wires attached to my chest. The wires were connected to a sonogram, which had a screen showing black-and-white images of my…
“I think you got this,” Dr. Landreneau told me. I didn’t know how to respond, and I was too worn out to, anyway. I graciously sipped through the straw in the cup of water he held for me, and silently accepted the two fun-size bars of…
The day I got my big idea, I received a package in the mail. Other than that, it was an average, unremarkable Tuesday. Speaking of unremarkable, the package itself was just that — a thin, brown, rectangle of fraying cardboard, about the size of a throw…
My mom took me and my 10-year-old nephew Andrew with her to the movie, probably because we were the only members of our family who wanted to see the 2019 remake of Disney’s “The Lion King.” Andrew wanted to see it because, well,…
“The Zeego Tales” track the wonders of my new life with my service dog, Zeego. “Hurricane Barry” sounded innocent enough — more like a goofy uncle than a scary predator. After making landfall in Louisiana, the hurricane was renamed a tropical storm, which is what reached my…
“I’d give all of my degrees to write as powerfully as Melville,” Dr. Cicardo mused. She had read a passage from “Moby-Dick; or, The Whale“ aloud to her small college class. She reminded me of a proud songbird who recognizes the beauty…
My unease kept growing on the first day of this evening class during my third semester of college. The professor hadn’t shown up yet, so we were a small group of seven or so students sitting around a long table in a small classroom in Griffen Hall, the…
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