by Faye Rapoport
Imagine pursuing a competitive swim career while battling a disease that causes the connective tissue throughout your body to progressively deteriorate. For Nancy Burpee, this is not a hypothetical situation. It’s her life.
Burpee, 39, was diagnosed with a rare genetic disease called Ehlers Danlos Syndrome, or EDS, in 1995. Her first injury related to the disease occurred at 18 months old, but despite multiple injuries and surgeries over years of athletic competition, her condition wasn’t discovered until adulthood.
Burpee’s father helped her get her start in swimming when she was three, and by the time she was 16 Burpee was training toward Olympic dreams. But numerous joint dislocations slowed her progress. After her EDS diagnosis years later, she returned to swimming.
EDS affects the body’s tendons, ligaments, cartilage, heart, lungs and other major organs. There is no cure; Burpee’s doctors simply help her monitor the illness and manage the pain. But despite going through her 20th surgery last December, and dealing with a recent breast cancer diagnosis that led to a mastectomy, Burpee is far from downbeat about her sports career or her life. She is a determined, positive spirit who won medals in the 50-meter and 100-meter freestyle swimming events at the U.S. Disability Championships last year. She also broke the nine-year-old Paralympic World Record in the 50-meter freestyle event. Her hopes of participating in the Paralympics in Athens this summer were recently dashed by a technicality related to her disability classification. But Burpee swims on, both for her own enjoyment and to raise awareness of the disease she is battling.
Burpee is the mother of three-year-old Gunnar. She spoke to Foot.com about her remarkably upbeat outlook on life and athletic competition, and shared some of her personal foot care tips.
Foot.com: Tell us about your start in the sport of in swimming. When did you begin to compete seriously?
Burpee: I started swimming at 18 months! My family was on vacation and we pulled into a hotel that had an outdoor pool with no fence around it. My mom tells me that as soon as my dad stopped the car to go in and get the key, I opened the back door of the car, jumped out, ran right for the pool, and jumped in the deep end, clothes and all. My mom was scared to death, but my dad just stood there saying, “Don’t worry, she’ll come up.” Obviously, I did, apparently with eyes wide open looking like a puffer fish.
I was in big trouble that night, and after that, Dad made sure he started to teach me to swim. When I was three or four, we had an above-ground pool in the yard. When I begged my parents for an in-ground pool, my dad told me that when I could swim across the current pool with no trouble, he’d get a built-in pool. I practiced like crazy all day, says my mom. When my dad came home at 5 p.m., sure enough, I swam from one side to the other and back a couple of times. My dad – being the most incredibly generous man and a man who honors his word – sold his Lincoln (car) and ordered the built-in pool for me. I began competing on swim teams by the age of 7.
Foot.com: You were an active kid. How did you go for so long without being diagnosed with EDS?
Burpee: I was diagnosed with EDS in 1995, at age 30. Symptoms, however, had started at 18 months with a broken elbow which no one knew about for two days because my mom said that even at that age, I had a ridiculous threshold for pain and never complained.
By the age of five I had sprained both ankles, and by nine I had dislocated all my fingers and toes and broke just about all of them. My elbows looked like they were on backwards and my hips could pop, but no one really put it all together.
I was swimming constantly by this time, and at age 9 had an undefeated season, breaking the New York state record for the 50-meter butterfly in my age group. I remember my joints always being in pain, though.
In ninth grade, puberty hit and the disease kicked into high gear. During my freshman year in high school, on the gymnastics team, my right knee completely collapsed during one of my vault landings. This type of thing continued through high school, where I played every sport I could: field hockey, basketball, track and field, softball and swimming. In my senior year, I had the first of 22 surgeries (knee).
Foot.com: Once you were diagnosed, what made you decide to keep swimming despite your illness?
Burpee: I decided to keep swimming with my illness because I’m not known for doing what I’m told. 🙂 Anytime anyone says there’s no way I can do something, or I shouldn’t do it, I go out of my way to do it! (I was told I’d be in a wheelchair by 30, and I’m still am not in one full-time.)
With my illness, there were (and are) many things I physically couldn’t do anymore without getting seriously hurt – such as playing basketball. In swimming, I lessen that risk, and I just love to swim. And swimming has been the best way for me to get out my frustrations and stay focused on proving people wrong. Swimming with a United States Masters Swimming* group has been the best thing for me. I can swim in a group environment, which helps keep me motivated and pushes me to do as well as I can. The coaches are great, and work with each person’s individual talents. And I’ve gained more wonderful, supportive friends than I could imagine.
Swimming allows me to continue competing. If I didn’t compete in some form, I’d be absolutely miserable. I love to race and I can’t imagine not being able to do it. Even when the time comes that I may end up in a wheel chair and a physical mess, I know I’ll find a way to compete.
Also, I figured that I had the capacity to continue being very good, and thought that if I trained hard enough and got to a world-class level, I could bring awareness to this disease and push other disabled people to get off their butts and do the impossible.
Foot.com: Now you’ve been faced with another battle: breast cancer. How has this more recent diagnosis affected your swimming career?
Burpee: I won’t allow breast cancer to affect my swimming career. Sure, being told I had it prior to the Paralympic trials, and knowing I’d need a mastectomy when I returned home from the trials, was a major disappointment to say the least. But instead of “freaking out” and getting totally depressed, I used the anger to work for me in the pool… I came home from the Paralympic trials with first place in my event.
When I returned home, I did what I had to do: had the mastectomy, with reconstruction, and was back in the pool two-and-a-half weeks after surgery, swimming initially with only one arm. I am currently having some problems with my stroke, experiencing a great deal of pain on the side where I had surgery, with “burning” and throbbing during workouts. I know it’s not damaging me further, so I just swim through the pain. The bottom line is that I’m cancer free, and if I don’t let the EDS affect my swimming, I’ll be damned if I let breast cancer, either.
And, hey, on the upside, boobs are over-rated anyway, especially in swimming! :>) Losing one 36C breast easily cut a couple of seconds off my time and will make it easier getting into those fastskin suits. ha ha…
Foot.com: What is the status of your plans to compete in Athens this summer?
Burpee: My appeal wasn’t accepted by the U.S. Paralympic team. I am continuing to pursue my situation with the U.S. Olympic Committee. “It ain’t over till it’s over!” Even if I don’t go to Athens, I will continue to work toward resolution so that others aren’t affected by similar confusion and technicalities. In the meantime, I continue to train hard, and may look to qualify for the New York State Empire Games. [Note: These games are not specifically for physically challenged athletes. In other years, Nancy has been the only challenged athlete competing, and has won a bronze medal.
Foot.com: You are an inspiration to anyone, but I imagine especially to others who deal with physical illness or disabilities and want to live life to the fullest and even compete in sports. What words of advice can you give them?
- A. Focus on having faith and look at what you CAN do, not what you think you can’t do because of what others (including doctors) tell you. God has a purpose for everyone. He made the human body incredibly resilient; it’s our own minds that hinder our capabilities and stunt our growth when faced with a debilitating illness or disability. Even when things look hopeless, there is another door just waiting for you to open it and walk through it.
- B. Don’t accept the title of “disabled.” If disabled people lived up to the general public’s idea of what they are capable or incapable of doing, they’d all be rotting in institutions. It’s better to make mistakes or fail at things while trying to see what your abilities actually are. And it’s better to be constantly pushing the envelope that everyone (maybe even yourself) deems unattainable than to accept the title of “disabled.” Never live with the regret of, “I wonder if I could have done that.”
- C. Think of what you can do for someone else. Just when you think life is over for you, remember that there is always someone worse off who could benefit from your strength of character, faith, and courage to look beyond limitations and enjoy life.
- D. Take a chance. It’s easier to have a pity party, give up, and be denied all the experiences and opportunities that so many able-bodied people take for granted. Instead, take a chance and TRY something. Sports are wonderful opportunities. Sometimes, people who never were into sports of any kind – let alone competing – and who may have abused their bodies with drugs, alcohol, inactive lifestyles, and stress, turn to sports when faced with a disability. No matter what the handicap, disease or illness, there is always some form of competition that can be done that will lift the spirit to new heights, if people would just take a chance!
* United States Masters Swimming (USMS) is a national organization that provides organized swim workouts, competitions, clinics and workshops for adults age 18 and over. Programs are open to all adult swimmers (fitness, triathlete, competitive, non-competitive) who are dedicated to improving their fitness through swimming. USMS’ 43,000 members, ranging in age from 18 to over 100, swim with 1,100 workout groups and teams nationwide.
Burpee’s Personal Foot Care Tips
Burpee has Raynaud’s Syndrome, affecting both her hands and feet (another result of her EDS). While she can’t usually feel her feet, she knows it’s still very important to take good care of them! Lots of swimming in chlorine-laden pools means dry ski, so Burpee uses Vaseline Advanced Healing lotion on her feet after swimming to combat the dryness (“I haven’t come cross anything better”). She has found slathering on this lotion immediately after swimming particularly helpful for her feet when she works out with fins in the water. Many swimmers use fins from time to time as part of their workouts help develop their kicking. Burpee, however, has had to use them consistently lately in training to help take some of the workload and pressure off her upper body as she heals from her mastectomy. Fins can be very abrasive to feet, and has found this lotion to work well.
When feet swell, Burpee uses menthol salicilate and water for soaking. Then she’ll wrap her feet in ice – like a compression wrap – and elevate.
Using small balls, like those used in handball (racquetballs are too big), Burpee likes to sit down and roll her feet back and forth. The balls hit just the right pressure points on the foot, and work the hamstrings a bit at the same time – both helpful for her swim training. She also uses socks that are now available with built-in/sewn-in little “balls” that serve almost as an acupressure “map” of the foot.