ALS Hasn’t Stopped This Woman from Running a Marathon in All 50 States
“The powers of hope and community propelled me forward and got me across every single finish line.”
Reason for Running: ALS takes away my ability to use my muscles, so I will be out there as long as possible to celebrate what my muscles can still do.
“Don’t worry,” my new husband, David, said in 2009 when I moved from Atlanta to Washington, D.C., to begin our married life. “It never snows here.” But then we were hit by three blizzards in six weeks! I got tired of being cooped up in our tiny apartment, so I found the treadmill in the basement. Fifteen minutes later, sweating and gasping for air, I felt awake and alive in a way I never had before. Add in the goal of training for a race just a bit outside my comfort zone and I was hooked.
My first race was the St. Patty’s Day 8K in downtown D.C. in 2010. I was so distracted by the scenery—running down Pennsylvania Avenue, crossing the National Mall in front of the Capitol—that I forgot to be nervous! After that, I used running as a way to explore my newly-adopted city, which was also useful for my job as an urban planner for the federal government.
In two years, I worked up to my first marathon: the 2012 Yuengling Shamrock Marathon in Virginia Beach. By then, I’d gotten into triathlons too and my first 70.3 (a.k.a. a half Ironman) was the 2013 Carolina Half at my alma mater in Davidson, North Carolina.
However, while training for the 70.3, my run and bike times were slowing down, and my hamstrings were incredibly tight. During the race, I had to walk a lot of the downhills because I felt like I was going to trip over my toes. I assumed I was overtraining or had a weird race injury, but the physical therapist I went to said, “your muscles just don’t seem strong enough for someone who just did that long of a race.” She referred me to a neurologist.
My blood tests, MRIs, spinal tap, CT, and first electromyography (EMG) all came back normal, but my symptoms kept getting worse. In just six months, I went from finishing the 70.3 to walking with a cane after falling in the middle of a D.C. intersection. My fifth neurologist re-did the EMG and diagnosed me with probable ALS in May 2014, which was confirmed in August. I was 33 at the time.
ALS is a death sentence—the average life expectancy is only two to five years. In that time, the person loses the ability to walk, talk, eat, move, and eventually breathe. The only approved drugs extend life expectancy by less than a year.
But everyone is different. My “brand” of ALS seems to respond positively to low-impact, gradual, strength building. I am convinced that swimming, Pilates, weight machines, and riding a trike have all helped me live more than nine years with this disease.
When I reached the fifth anniversary of my ALS diagnosis (a milestone that only 20 percent of people live to see), I realized that I was still waiting for the disease to catch up with me—which isn’t truly living. Living means making long-term plans, striving toward future goals, and believing that tomorrow will be better than today if you’re willing to put in the effort.
So I decided to set the craziest goal I could think of: a marathon on a trike in all 50 states. Through our foundation, the Team Drea Foundation, we decided to film a documentary to raise awareness and funds for ALS research. To date, we’ve raised $1 million!
We began filming in May 2019, and I was at state number seven on my marathon list. Our plan was to film for a year, through Alaska (state 21), and get the film out as quickly as possible so people could actually run with me in some of the remaining states. Then of course, the pandemic hit. No one knew how long races would be canceled or if I would be strong enough to continue. So we decided to keep filming.
I hate to spoil the ending of the film, but yes, I made it! Go On, Be Brave follows my journey to become the first person with ALS to do a marathon in all 50 states. The documentary turned out more beautiful and inspiring than I could have ever imagined—and I was there! The powers of hope and community propelled me forward and got me across every single finish line.
As grateful as I am for the 50-state marathon journey, I am also enjoying the pressure of being off.
Over the next year, my husband David and I will be traveling to more than 50 planned film screenings and book events for my soon-to-be published (September 2023) memoir, Hope Fights Back, with co-author, Meredith Atwood. That doesn’t leave a ton of time for training, but we hope to partner with races along the way. I love exploring new places on the trike so I will be out there as long as I have the strength.
I never knew how truly magnificent the human body was until mine started failing me. When you think “I want to take a step,” there’s instantaneous signaling through your motor neurons and your muscles respond. It’s miraculous. When you are running, take a moment to appreciate what your body can do.
Because I move frustratingly slowly through the world on a walker, freedom is the best word to describe how I feel on the trike. When I’m training or in a race, I travel at a runner’s pace and it reminds me that I am an athlete. Breathing hard, working my muscles, these are all things I should no longer be able to do with ALS, but I can! I will never take for granted what my body is still able to do.
These three tips have made my running journey a success:
1. Live your life
Time will pass either way, whatever your mood. When I was diagnosed with a terminal illness, of course I went through a grieving process. But I realized that all I could control was my attitude.
2. Remember that tomorrow is not promised
Every day that I am out there is a good day. Whenever I start getting in my head about the weather or my knees hurting, I remember that, one day, I will no longer be able to do this. So many of my friends have died or no longer have the ability to move—that snaps things back into perspective really quickly.
3. Keep putting one foot in front of the other
When that’s too much—stop, rest, reset, and find the right motivation to keep fighting. Any forward progress is enough. One hard day, hope will fight its way right into becoming belief.
Andrea’s Must-Have Gear
→ Catrike Folding Trail: I couldn’t get anywhere without my Catrike recumbent trike. It’s great for people with back problems, balance issues, or other medical issues. Even runners must have other folks in their lives who could use some exercise but can’t run. It’s like Mario Kart for adults!
→ Rabbit EZ Tights in Gibraltar Sea Mountain: I may have a teeny obsession with fun, colorful leggings and rabbit’s buttery soft EZ Tights are absolutely the softest around. Also, my husband and I have to negotiate which color of their Jogalongs we’re going to wear—otherwise we’re liable to be twinning!
→ CLIF BLOKS Energy Chews Tropical Punch: My go-to fuel during a race. Six chews times 50 marathons equals 300 of these addictive little suckers I have consumed!
posted Saturday May 27th
by Runner’s World