The year before I became acutely ill, in addition to playing for an ultra-competitive club field hockey team, I was a multi-sport athlete for my high school. To categorize myself as “active” would be a profound understatement. The girls on my indoor field hockey team would tease me at tournaments, because I ran or skipped everywhere! Oh, you forgot something at the court? No worries! Francie is already leaping across the arena to grab it for you…
Landing on my back, sequestered to bed after my initial EBV infection was a harder hit than I ever took in any field hockey game. While that time was necessary for my immune system to have a fighting chance at defeating the invader, the deconditioning of my body that occurred as a result made the return to a decent level of functioning exponentially more difficult to achieve. To this day one of the steepest, uphill battles I’ve endured was the intense physical therapy program prescribed by a team of doctors at CHOP. It was also one of the most rewarding endeavors to date. In the beginning of the process, simple aquatic therapy sessions would push me over the edge. I vividly remember sitting in the car after PT, balling my eyes out from the pain of nerve desensitization.
For years my most intrusive symptom has been chronic pain. When asked to describe the feeling on medical intake forms, I usually have to check all of the boxes or respond with “all of the above”. It burns, it aches, it stabs, it throbs. It is my joints, my muscles, my nerves; it is so deep that it feels as if even my bones feel pain. It is not always raging, but it never goes away. When it is mild I can easily forget it, but when it flares it acts like a monster-with-a-vengeance, insisting on making its presence known and appreciated.
While I am in as good, if not better shape, than I was pre-EBV, the sensitivity to touch I cried about during my first PT sessions, still haunts me everyday. It’s a condition called allodynia, the triggering of a pain response from stimuli, which do not normally provoke pain, or hyperalgesia, an increased sensitivity to pain, which may be caused by damage to nociceptors or peripheral nerves. The best example I can offer of this is something my mom recognizes in the times she will lean in to hug me gently and I will instinctively cringe and back away. Even the soft touch of a mother’s love is too traumatic for my poor body, constantly riddled in pain.
The hopes of intensive and prolonged PT were to gradually diminish the pain levels. Unfortunately, the pain has stuck around, but thankfully so has my passion for exercise. I am unbelievably grateful to have the ability to workout in the way I can. It can be frustrating when the doctors “bench” me from running, due to excessive joint swelling, but having the chance to sweat everyday is something for which I am wholeheartedly pleased. There is nothing more gratifying than completing a workout that you never imagined yourself being able to do.
My quasi-insane devotion to exercise is spurred by two things: 1. gratitude for my body’s abilities and 2. fear for the seemingly imminent physical decline if I stop. I commonly use the catchphrase, “If I don’t use it, I’ll loose it”. This may or may not be true, and the speed at which I could decline is unpredictable, but that’s not a risk I am willing to take. I firmly believe by staying active I have seriously slowed down the progress of my disease.
When I arrived home from treatment in Switzerland this past February I was having a lot of trouble running due to hypermobility. I couldn’t do yoga for the same reason. Yoga and connective tissue disorders are a dangerous combination. My doctor strongly suggested working on muscle strengthening in order to improve joint stability. In my search for good programs, to this end, I found a studio around the corner called Barre Focus Fitness (BFF). Little did I know, I would become addicted to Barre (a combination of Ballet, Yoga, & Pilates) and fall in love with so many of the teachers and clients. Over the past seven months BFF has become my safe haven, my refuge, and my paradise.
On nights I couldn’t sleep, I would lay in bed looking forward to 6:00 am class. Even on my busiest days, I would carefully plan my schedule around Barre class. While undergoing chemo I suffered from terrible acne and I am embarrassed to admit how much I dreaded going out in public because of it. However, I never had to worry about showing up to BFF, no matter how horrible I looked or awful I felt. The supportive environment comforted me inside and out.
The positive and friendly spirit of the studio continually amazes me. The instructors exude optimistic energy and the other women in the classes create a contagious essence of strength. I live for the challenge of a new sequence of poses and movements. There is nothing better than working so hard that your legs shake like Taylor Swift’s song tells you to. The friendships I’ve forged at the Barre mean a great deal to me.
About a month ago I was talking to Kelly, one of my favorite instructors, about how Paddy had developed a deep-seated hatred for Barre classes, because it is the only time of day when I leave him home for an hour. He thinks it’s outrageously unfair that sidekicks ever have to be separated from their partner! Kelly emailed me later that day with an idea. She and Amy, the owner of the studio, asked if they could dedicate their every-other-month charity class to Paddy’s service dog school. I was deeply touched by this proposition and Paddy was thrilled that he would finally be allowed to visit his mom’s favorite hangout.
So, this Saturday at 10:45 am, Emily, another wonderful instructor, will be teaching a free class to benefit Main Line Deputy Dog (MLDD). It is a donation-based event and all of the earnings will go towards MLDD’s effort to help people with physical challenges or mental health concerns train their own dogs to be fully certified service dogs. Paddy and I couldn’t be more excited for this opportunity to show off his brand new harness and to represent all of my inspiring classmates and their dogs.
I’ll take mindfully burning my muscles out at the Barre over uncontrollable nerve pain any day. Thank you to all my “BFF”s!