Tis the Season to Indulge (in moderation) RECIPES Wild Rice Bowls with Spiced Squash, Mushrooms and Curried Yogurt; Lunch Wraps with Sunflower Seed Spread; Beet the Cold Smoothie
If you look carefully, there’s a slight shuff le to Carrie Siu-Butt’s walk. When the 43-year-old is at work and dressed in smart suits or fitted A-Line dresses, she takes short steps in her black patent heels; her right foot scuffs the f loor ever so distinctly. The scar on her chest is another clue. That’s where the battery that powers her resides. Shuff les and scars are indicators of the neurological condition she’s managed since she was 12 years old. When she’s in her leggings and sneakers, though, Carrie glides like a gazelle.
Dystonia cripples some parts of the body, and leaves others alone. The jerkiness of Carrie’s dystonia first affected her stride around puberty. By her mid-20s, it was painful to walk. The severe and involuntary muscular contractions occurred frequently, making it hard to move. Even when sitting still, the twisting spasms would ache deeply. Some doctors urged Carrie to consider using a wheelchair to get around, and on with her life.
Instead, Carrie opted for an experimental medical procedure called Deep Brain Stimulation ( dbs). dbs, originally developed for the treatment of tremors in patients with Parkinson’s disease, involves surgically implanting a battery-powered st imulator, a brain pacemaker, which delivers electrical stimulation to the areas of the brain associated with dystonia. In April 2006, when she was 30, Carrie underwent two procedures. Carrie’s stimulator was implanted in her chest. Extension wires connect the stimulator to leads deep in the brain. Carrie’s head was shaved, and she was awake during the process of implanting the leads. She responded to cues as the surgical team worked on placement. Then, under general anesthesia, the simulators and wires were implanted. The stimulation was adjusted by remote control to achieve the most optimal settings. After six weeks of rest and recuperation, Carrie’s pain had decreased, and she was able to walk without her leg dragging. That’s when her running dreams started to take form.
In Carrie’s case, running streamlines any jerkiness caused by the dystonia. One year later, she ran a 10k. Three years later, two half marathons. Last November, Carrie ran her second marathon (and racked up 12 half marathons total).
“It wasn’t until I had brain surgery that I decided I wanted to run a 10k,” says Carrie. “For me, running is cathartic. Feeling the ground with every step reminds me that I am a miracle every step of the way.”
Whenever Carrie talks about training, a huge smile grows on her face, her eyes squint with happiness. She radiates gratitude, and for good reason; it sure beats a hospital bed.
Since her first dbs surgeries in 2006, she’s had six additional surgeries to replace the battery. When the battery starts to lose power, she not ices ext reme fatigue. Slight tremors can set in, her vision deteriorates, and her speech starts to slur.
“I t ’s compa r able t o you r iPhone’s battery,” explains Carrie. “Over time it loses its charge and just doesn’t function the same.”
Carrie most recently replaced her battery last April, when doc tor s at Toronto Gener a l Hospital needed to go in. Two months later, Carrie was training for the New York City Marathon. She also travelled to and ran in Taiwan and Japan. She’s excited about her running and travel plans in 2019.
In addition to running, Carrie c redit s medit at ion a nd her community for helping her face each day with renewed hope and ent husiasm. Her sister Suzie, who also has dystonia, is her biggest cheerleader (Suzie hasn’t been lucky enough to run marathons). Carrie has documented her hospital stays and runs on her personal blog runcarrierun.org and act ive Inst ag ram account @csiubutt. She looks forward to posting more in the coming year.
“After 30 years of living with a rare disease, I have reached acceptance. I am more confident now in saying I am disabled. And with acceptance comes peace,” says Carrie. “Despite having two batter y-replacement surger ies over the course of 10 months, I still believe that dbs has been my miracle. I am thankful every day for my family, my tribe and the miracle of modern science. I am grateful that I can be a spokesperson for such a rare disease and an advocate for medical research.”
Carrie awaits the day when she can charge the implanted battery herself. Until then, she’ll spend her precious energy running for those who can’t. Tania Haas spends her days running, profiling runners or writing at Medcan, where she helps people achieve goals through personalized and preventive health.
“Feeling the ground with every step reminds me that I am a miracle every step of the way.”