Chrissy Hilcken-Kempner’s story is one of the emotional healing and absolute strength of a former collegiate Division I softball player who finished her college athlete program against all odds. Like many in the community, her lymphedema journey occurred during a critical period in her life as she transitioned from adolescence into adulthood.
The following blog post was written by her in her own words and shared as a member of The Lymphedema Running & Fitness Club for which I am an admin of on Facebook. While we have members from around the globe that participate in various sports, Chrissy is our first former competitive softball player to join the group. She gave me permission to post her story on this blog.
If you read this and you find parallels into your own journey of being dismissed and misdiagnosed for years, then I hope you are as equally inspired as I was at her ultimate personal triumph.
I am done remaining silent. Hopefully my story can raise some awareness about Lymphedema, the awareness we so desperately need and deserve.
When I was thirteen I had a severe cellulitis infection in both hands, far worse in the right. My mom and I went to see a covering physician affiliated with North Shore University Hospital, which is now Northwell Health. The doctor proceeded to tell my mother I was crazy and my hand was not bad (let me mention that my mother is a brilliant, well respected, registered nurse). In fact, he insinuated that my mother was attempting to obtain narcotics, thereby using me in the process. That night, I couldn’t feed myself, dress myself, or open doors. My hands felt like they were engulfed in flames. In the middle of the night, I woke my mom up in tears, and she took me to the Emergency room at North Shore. I was admitted with IV antibiotics and a morphine drip. Step 1 to a damaged lymph system.
In high school, and later college, I was a competitive fastpitch softball pitcher. I lived for the ball in my hand, dirt on my uniform, the smell of the grass, and the overall love of the game. It was my safe haven. During high school (age 15-17), I experienced minor swelling in my hand and arm that came and went after pitching. My speed decreased, ever so slightly, between my 10th and 12th grade years. We went to several physicians at Hospital for Special Surgery in Manhattan. They, again, thought we were crazy and they said the swelling was not a concern (they in fact did not think it existed).
Flash forward. Freshman year of college (18): I was recruited to pitch at Lafayette College. Towards the end of my freshman year season, I tore a ligament in my right shoulder and subsequently underwent right shoulder surgery. We, again, went to the best: The surgeon for the New York Jets. I underwent surgery at Lenox Hill in Manhattan in July 2008. Before surgery, mom asked whether Lymphedema could be a possible complication. My surgeon completely discounted this question, and instead responded, “don’t worry I’ll have you back on the field in no time.” Eighteen and naive, my only concern being softball.
For months after the surgery, the swelling spread to my right hand, back, right shoulder, and right breast. Doctors initially attributed the swelling to the surgery. I underwent massages that almost made me throw up from pain. But, of course at the time, my objective and my physical therapist’s objective was to get me back on the field. Mom, again, asked my physical therapist about Lymphedema. His response was, “relax, mom, you worry too much, that’s a worst case scenario, Chris will be fine.”
Several months later, several doctors later, at nineteen, we went to the Children’s Hospital of Pennsylvania. I was ultimately diagnosed with Lymphedema. The diagnosing physician told me pitching was out of the question, my college softball career was over. Of course, I decided that was not happening and found one doctor, out of ten, who would “try” to help me back to the field. I lost my sophomore season, but returned for my junior and senior seasons. I really could not play much at all, and my abilities were significantly impacted, but at least I finished. It was not my fairytale ending, but it was the ending I was intended to have. My days were spent either in compression garments or mostly wrapped in bandages. My spare time was spent receiving MLD therapy. I shoved the emotional aspect of Lymphedema to the far recesses of my mind.
Even after my diagnosis, at age nineteen, there was little information on Lymphedema. My focus at the time was softball, when it should have been on the fact that Lymphedema was a life long disease without a cure.
When I was diagnosed, they didn’t tell me that the emotional rollercoaster was as intense as the physical. Nor did they tell me my new compression garments would make me feel like someone was choking me from the inside.
They didn’t tell me that people would stare and ask idiotic questions, nor did they tell me that airport security would physically stop me, take me off the line, and treat me like a criminal.
They didn’t tell me it was okay to be angry and it was okay to have bad days.
They didn’t tell me that I would miss holding my husband’s hand and feeling skin to skin contact, and they didn’t tell me that people would think my glove was unsanitary.
They didn’t tell me that I would struggle being in the sun, watching my sister’s softball games, or walking outside.
They didn’t tell me that my hand and arm would feel like a bowling ball.
They didn’t tell me I would have trouble mixing cake batter, opening jars, cutting vegetables, and taking down the Christmas tree ornaments.
They didn’t tell me writing and typing would be difficult and my arm and hand would be fatigued.
They didn’t tell me I would struggle every day, and others would perceive me as weak and lazy.
How was it possible that the medical professionals knew so little about Lymphedema? They missed the warning signs. Deep down I do not fault them. Although, I would be lying if I said I did not hold any anger. Everyone makes mistakes, these doctors made them. They should have considered Lymphedema as a possibility. But, no one is perfect. I made my own mistake by waiting eight years to work through my diagnosis. As I read recently, “everyone has their own shit to shovel,” and this is mine.
A few years ago, Jimmy Kimmel and Josh Duhamel performed a parody about “The Man with the 132-Pound Scrotum.” They made fun of the way he carried himself, his daily life, and how he walked. They obviously made no reference to Lymphedema. This is what we deal with it…no awareness.
Today I ordered new gloves, sleeves, and an overnight garment. The overnight garment is about $800, sleeves $80-$90, and glove about $130. I’m fortunate enough to have an insurance company which covers Lymphedema, for now, after I reach my deductible. But, most do not have adequate insurance, and how long will pre-existing conditions be covered?
Medical professionals are trained about Lymphedema for less than one day. Textbooks cover it in less than two pages. Why? Instead, people think people who have Lymphedema are fat, and have “let themselves go.” They do not see the struggle it is to wear the compression garments, to exercise while your body swells, the pain when the swelling is bad, and the emotional toll it takes on your mind as Lymphedema is disfiguring.
But, as I am only learning recently, there is a life WITH Lymphedema and it is hard, but it is beautiful. My husband, who is my rock, and I recently rescued our first puppy, Benson. For eight years I have been a shell, hiding my emotions. I went to law school and I’m a practicing attorney, yet the voice I had before Lymphedema was still missing. Benson, this beautiful puppy who was abandoned in Alabama, began to heal the broken part of me. I found myself falling in love with the outdoors again and realizing just how beautiful our world is.
As I said, life with Lymphedema is hard, and most cannot understand, but it is beautiful and just as wonderful. You only get one life, so shovel your shit, and enjoy what life has to offer.
I hope my story can help some and raise some awareness for this disease. We deserve the awareness, we deserve readily available medical treatment, we deserve health insurance, and we deserve compassion, respect, and love.