I have long realized the power of clothing. In fourth grade, I noticed that wearing bright colors and loud patterns could project positivity no matter what happened to me at school. As time went on, I learned that my outfits had a disarming effect on those around me. Instead of picking on this nerdy bookworm, folks started looking forward to “What crazy outfit does he have on today?”
Clothing is an especially important asset in my career as a specialist in amyotrophic lateral sclerosis (ALS). I see a dozen patients with this disease every Tuesday. Most appointments consist of tough conversations about worsening deficits, frustrating losses (no longer driving, giving up a favorite food), and frightening new devices (wheelchairs, feeding tubes, ventilators). I wear my most colorful, fun outfits on Tuesdays. When I leave an exam room with tears in my eyes, my clothing lifts me. It helps me bring a restored positive energy and enthusiasm into the next room. My team has started to join me in “fashionably fighting ALS” with a specific theme each month, and this has become a unique way for us to bond. Patients report that our outfits make the clinic less intimidating.
Last year during the pandemic, I helped design and create my first bespoke suit, which features five symbols, each representing an important lesson I've learned from my patients. The pant legs are symbolically adorned with motor neurons, the tiny nerve cells that affect everything we do, and that ALS gradually destroys. As one patient vividly described the disease: “It's like I'm living in a box, and every day it gets a little smaller on all sides.” This description pushes me to keep working to find better treatments, even on days when I'm exhausted or frustrated.
Depicted on the sleeves is the staff of Asclepius, a universally recognized symbol of medicine and healing. It reminds me how far we've come, from telling patients there was nothing we could do to offering evidence- and experience-based treatments that address symptoms such as anxiety, constipation, cramps, depression, drooling, insomnia, pain, and urinary urgency.
The front panels have blue cornflowers, which appear fragile but are surprisingly tough; they maintain their beautiful color through the harshest winters. My patients share that resilience, finding creative ways to accomplish things despite their disease. One patient is an athlete who wanted to complete a marathon in each of the 50 states. Switching from running shoes to a recumbent bike, she will complete her amazing quest in Alaska in 2022.
The back of the suit jacket has X-Files imagery, which refers to ALS Untangled, a program I started in response to the many alternative and off-label treatments that patients read about online. [The TV show The X-Files was about FBI agents investigating mysterious and unverified phenomena.] ALS Untangled collects and scientifically reviews these treatments to help patients make more informed decisions about them. Some of them have promising mechanisms, solid preclinical data, and even positive clinical trials.
Perhaps the most important symbol is the swallow. I included it in honor of one of my youngest patients, who was diagnosed at age 29 and died at 31. Early on, I noticed that he and his friends all had tattoos of black swallows. He explained that before his mother died of ALS, she gave him a book in which she had drawn a swallow on every page. When he turned 16, he had tattoos of all those swallows copied on his arm. After his diagnosis, many of his friends got at least one tattoo in solidarity. At the time of his death, the muscles in his face, arms, and legs were completely gone, but his heart was as strong as ever. The swallows on my suit remind me that I have more powerful weapons than medication and equipment to fight ALS—I always try to say something hopeful to every patient.
I call this bright blue suit with its many symbols my super suit, and I wear it on my busiest, most difficult clinic days. It helps me stay energetic and positive and reminds me that hope is the most powerful thing I can offer.
Dr. Bedlack directs the Duke ALS Clinic in Durham, NC. He also plays golf and has several holes in one to his name. He played in the World Series of Poker in Las Vegas and walked the runway at Men’s Fashion Week in Paris. He lives in Durham with his wife, Shelly, and two mischievous cats.
