NOTme : Alexandra Hackney
Age: 26
Hometown: New York, New York
Occupation: School psychologist
Execution time : I have been training and racing regularly for two and a half years.
I was diagnosed with Chronic Juvenile Dermatomyositis (JDM) when I was 8 years old. JDM is a disease in children that causes skin rash and muscle inflammation. Weakness was the first symptom we noticed. It came with a vengeance and was hard to master. I had to give up football (which was my passion) and all sports.
I couldn’t bend over to pick things up, carry a brush to my head, or sit cross-legged on the floor. People actually had a hard time understanding what I was saying because the muscles involved in speech production in my throat were so inflamed and weak. My mother had to help me wash my hair for a while because some activities hurt me too much.
I also developed a reddish rash around my eyes, cheeks, knees and elbows, and my finger cuticles were inflamed. For me, the rash was the symptom that always affected me the most. It didn’t really start to get better until I was in college.
Over the years, the symptoms would improve and the doctors would wean me off the many medications I was on, and then another flare-up would occur. By 7th grade things were going well and I had started playing football again after a few years. I also lost weight from the high dose steroids I was taking. But unfortunately I had another flare up and had to give up football again.
After that, I was scared and hesitant to do exercises, thinking that I would become weak again. For many years, I had to deal with the side effects of not only JDM, but also the medications I was taking. My appearance was very different with the red rash and the “moon face” of the steroid, prednisone. So I focused more on doing well in school because that was something that was always in my control.
I started taking prednisone at age 8 and stopped at age 20. In 3rd and 4th grade, I missed every Wednesday of school to go to the hospital to get IV steroids, which lasted all day. I finally stopped getting IV treatments when I was in college and had a port placed in my chest because my veins were giving way from being jammed with needles so often. I’ve also taken and stopped many medications over the years because doctors said they worked for patients with other similar illnesses.
My boyfriend, Ryder, and I started running together in October 2019, a few years out of college. We watched our friend run the Chicago Marathon, and I said to my boyfriend, “You know, we could do that!” A few days later, he was already looking for training times for the half marathon for both of us.
When I started running, it was more than difficult. It made me cry at first because the feeling of rebuilding my muscles reminded me so much of what it was like to be weak on JDM. I was also hesitant that the formation could somehow cause another push, but I kept pushing.
At first I was probably running every other day and no more than 3 miles. I was obviously very slow at first. Our first race we did was the “Run for Blue” five-mile race in Philadelphia. If I remember correctly, I was able to run this in just under an hour. Since then I have really developed my speed and endurance. We use Strava to track our runs, and this month we completed the 2022 United Airlines NYC Half using a The runner’s world Training plan.
Before COVID we had all of our races lined up to qualify under the New York Road Runner’s New York Marathon 9+1 Schedule. We were able to do two races in person before everything went virtual. The 2021 New York City Marathon was our first in-person race we’ve been able to do in a while.
I think what drew me to running a marathon was that it was a seemingly unattainable goal. I had also tried to get back in shape but I could never really follow a routine. Training together and following the 9+1 program through NYRR to run the New York City Marathon really made me stick with it.
Currently I run five times a week with long weekend runs. My working hours are really long, so I’ve been doing a lot of my training this winter at the gym because it’s dark when I get home. I look forward to the warm weather and doing more outdoor shopping!
Ryder and I will also be running the Berlin Marathon in September 2022. We are part of the stroke of happiness (HOH) team. HOH is a happiness blog run by Brian Dubow who has run several marathons in addition to an Ironman triathlon. We are extremely excited to complete our second marathon, and our end goal is to complete the Abbott World Marathon Majors!
Running makes me feel like I can conquer anything! It makes me strong, confident and proud to be me, my past included. I also feel very proud to qualify as an athlete today. I’m grateful that my body allowed me to run today and I won’t take that for granted. I have been completely drug free since the age of 23! I also have virtually no symptoms since being off the meds.
These three tips have made my running journey a success:
1. Make a plan and stick to it
My boyfriend and I have our schedules hanging on the fridge and we hold each other accountable. My job is very stressful and tiring and there have definitely been days this year when I needed a mental health day. But we always make sure to do those errands.
2. Stay hydrated
Especially before long runs, it’s so important. I like to mix my sports drinks and hydration tablets. Nuun is a big one.
3. Be kind to yourself
Not every race has to earn a medal. It’s normal not to have the energy to be fast in every race. Sometimes doing the practice runs is what counts. Just going out and doing it makes me proud.
Everyone has a story. If you are going through a difficult time, know that there is light at the end of the tunnel. Don’t give up on your fight, be kind to yourself and others and your future self will thank you!
Alexandra’s essential equipment
→Brooks Ghost 14: I LOVE my Brooks Ghost running shoes! I have tried others but always come back to Brooks.
→Honey Stinger Energy Chews: This provides excellent fuel for long trips.
→Sunzel Biker Shorts With Pockets: They are so comfortable and hold my phone so well. (I don’t like running with the armbands to hold your phone.)
→Strava: I use this app to track all my runs.
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