When I crossed the finish line of my first Half Marathon the day before my 27th birthday, I dropped to my knees and sobbed. It was a moment that I never imagined possible in my wildest dreams. I was the little girl in elementary school who always had to sit apart while my classmates walked the mile in gym class. I would go a long way.
Although I look completely healthy on the outside, I was born with Cooley's anemia less known as the beta-thalassemia major. It is a rare genetic blood disorder that affects about 1,000 people in the United States, according to the Centers for Disease Control and Prevention (CDC). There are several types of thalassemias or hereditary blood disorders, and mine is the most severe. When I was a baby, my parents were told that I would probably never be as active as most children or even live so long ̵
Quick Lesson in Biology: A protein called hemoglobin allows red blood cells to transport oxygen from the lungs through the body, also to important organs such as the heart, as explained in the CDC . But thanks to a bone marrow malfunction, my body does not make enough red blood cells, and the ones I make do not work as well as those of the average person. This means that my body does not always have enough hemoglobin, which is quite vital. Basically, my body has to work harder to stay alive and to function normally.
While there is no definitive cure for Cooley's anemia, it is a highly controllable disease if you are fortunate to have access to proper care what I do. My treatment plan is quite simple: every two weeks I spend five to eight hours in an outpatient clinic and receive two units of red blood cells from IV. I also take medication to handle the extra iron in my body, which is a by-product of the blood donation. Since I received treatment almost immediately after diagnosis at the age of 6 months, this is the only lifestyle I have ever known.
When I need a transfusion, it feels like being in a cell The battery of the phone loses its charge and floats longer in the red zone than it feels comfortable. I am exhausted in a way that can not be resolved when I press the snooze button. Everything I do feels like an intense effort. I can feel my heartbeat sharper and get out of breath if I just climb stairs or run my dog around the block. My skin is gradually paler and the dark circles under my eyes deepen.
After getting a transfusion, someone swung a wand all my life. My complexion, my energy and my mood are turning into brighter, more brilliant versions. When the second sack of blood is over and I can go home, I feel stronger and in the evening I am as good as new. I feel like I'm on top of the world for a week, maybe 10 days if I'm lucky. Then I'm on a creeping descent, from the feeling that I'm fine, until I can count the days when I can get full.
I started running when I was in college, mainly to see if I could. After living my life under the supervision of a doctor and desperately trying to stay healthy, there is no better feeling than walking, just because I feel good enough to move forward. I have not yet managed to bring Cardio to life, which brings me back to this half-marathon.
After running for several years, I desperately wanted a endurance race to see what I was capable of, similar to the reason I started running at all. I knew that I could not walk every day and especially not on the days that my transfusion was imminent, but I wanted to see what was possible. I did not know anybody with Cooley's anemia that ran or was as active as me. I suppose that's why it felt so wild to run a half marathon. But I set myself a goal and wanted to achieve it. I wanted to know that my Cooley's anemia could not stop me from doing things I loved.
When I looked at half-marathon training plans, I kept coming up with advice on how to run four to six days a week and increase mileage every week. Instead, I used my years of experience with Cooley's anemia to find what seemed feasible for me: three runs of three to four miles a week with just a long run of six miles or more every two weeks. I made sure that my longest and hardest runs coincided with the time I got my last transfusion and was physically strongest. (I'm not a doctor, so this is no advice for anyone who suffers from Cooley's anemia.) For me, after decades of getting to know my body, it just felt safest and best.)
tried to hear my body. When a blood transfusion is due, a mile feels like a very hilly 12. Some days I knew that I could safely penetrate that feeling. On other days, even the shortest runs felt too much. Those were the days when I tried to be kind to myself. While it's worth using sports as evidence that this disease does not define me, it also means that a break can feel like I've let myself down. But over-exerting when you have low hemoglobin levels can be dangerous, and I knew that my safety was most important.
Exceeding this finish line has taught me that Cooley's anemia does not stop me from running or anything else about how important it is to understand my own limitations. In the six years since then, I have run four more half marathons, and I always have this lesson with me as I chase after my runner's high.
Over time, I've gotten even better at respecting the boundaries of my body, which are fluid. Sometimes that means having an unplanned rest day or dropping it off prematurely, which made me feel beaten and frustrated. Although this disappointment still persists, it does not ruin my day as it used to, and it helps to know that I am ultimately doing the right thing for my body and mind.
Cooley's anemia has forced me to set one. I sincerely value my body for what it does, and at the same time accept its limitations. That way, my Cooley's anemia was actually a blessing. While it is easy for some to consider sport as a punishment, I consider it a luxury. Sitting in hospitals all my life means that I have seen many people who, unfortunately, are struggling with far more devastating circumstances than I am.
Regardless of the diagnosis noted in my medical charts, fitness has helped me prove to myself that I am healthy and capable. I run because I can and because I consider it an incredible privilege. Chronic Illness or not, when I am active, I can see how big and alive this life can be.