How I Overcame My Chronic Disease and Learned the Power of My Body

From the time I was 8 until I graduated from high school, I was almost always excused from gym class. My doctors didn’t want me to “overdo” anything and cause my CRPS to flare up, so they gave me a note to bring to school every year. The doctor’s note basically gave me carte blanche to bail on any activity I didn’t “feel safe” doing. I’d still participate in fun stuff like archery and bocce, but I always made a point to get out of anything that involved running.

I was terrified of running.

Complex Regional Pain Syndrome (CRPS), formerly known as Reflex Sympathetic Dystrophy (RSD) is a chronic pain condition that is only recently becoming more understood. According to the National Institute of Neurological Disorders and Stroke, “CRPS is believed to be caused by damage to, or malfunction of, the peripheral and central nervous systems. . . CRPS is characterized by prolonged or excessive pain and mild or dramatic changes in skin color, temperature, and/or swelling in the affected area.” Symptoms vary in severity and duration. It is not uncommon for someone with CRPS to be fairly immobile for months or years as they work through a flare-up. Some people, like me, experience an ebb and flow of symptoms over time, and have periods where they are more able-bodied and their pain is a bit more manageable before a flare-up arrives and takes that mobility away again.

A funny thing about having to relearn how to walk is that you are hyper-aware of how your body moves when you are trying to propel yourself forward. I was convinced that if I ran, it would somehow ruin all of the walking progress I had made. It also didn’t help that my doctors always talked about me running in the same tone of voice parents in TV movies talk to their kids about staying away from drugs.

Almost a decade ago, I decided I wanted to try running. I wanted to see if my body could handle it. It took me a whole year to gather the courage to run around my apartment complex. I didn’t even make it 100 yards before I needed to stop. My lungs couldn’t handle it. My legs didn’t like it. I felt like a failure. It was another three years before I tried again, and once again, I wasn’t up to the task. I was devastated, but determined. I decided I wasn’t going to give up, even if I didn’t know how to proceed. Six months later, I had an epiphany.

I started a weight-lifting program with one of my best friends. Part of the program involved running laps. I started to see and feel my body changing. I was growing stronger, more flexible. My body could do so much more than I had ever given it credit for, and I was amazed at my progress. I started to wonder: What else can I do? How far can I push myself?

Then the Boston Marathon, one of my favorite events to go and watch, was attacked. I cried in the shower that night, shaving my legs, because I had legs, and other people didn’t anymore. I resolved to run for them. I resolved to be grateful for my working legs, because I hadn’t always had working legs, and that meant I had an inkling of what those survivors were about to go through. That was the day I got serious about running.

For 2014, I set a goal to participate in four 5k road races. As of August, I’ve completed that resolution. I am planning on adding one or two more races as a stretch goal. How great would it be to complete six races in twelve months?

I am constantly amazed by my body, and I am so grateful that I am currently healthy enough to run, and participate in these races. I know I will never lead the pack or win a race, but I feel like I am already winning the war every single time I finish. Sometimes I am moved to tears when I run, because I never thought I’d get here. For decades, I didn’t even dare to dream it was possible.

Maybe I will be able to keep this up for years. Maybe I will get a flare-up that stops me in my (literal) tracks. I’ll tell you one thing, though: I am going to keep moving, and be grateful for every stride I take for as long as I can take them. I will treasure the sound of my sneakers hitting the pavement, and I will cherish the feeling of crossing the finish line. I will do this for as long as my body allows me to continue, and I will be grateful for every moment.

Anna Franzosa is a logophile, Whedonite and a bit of a tech geek who spends her workdays solving other people’s hardware and software problems. On the weekend, you can usually find her wandering around a State Park or enjoying a sporting event. Bunnies are her favorite animal, but please don’t mention this fact around her two cats (it hurts their feelings). You can follow her @annerbananer on twitter and at her website livingthecrpslifestyle.com.