Hi everyone, my name is Chrissy Hilcken-Kempner and I am 27 years old. I am originally from Seaford, New York, but recently my husband and I purchased our first home in Commack, New York. I am a practicing attorney on Long Island in the area of Insurance defense. My husband, Tyler, is my best friend, high school sweetheart, and the love of my life. I am the daughter of two amazing, loving, and supportive parents, and the big sister to an almost 16 year old, who inspires and motivates me every day. When i was younger, I was a competitive fastpitch softball pitcher, and later on, I was lucky enough to play Division 1 softball at Lafayette College.
I have Lymphedema in my right arm and hand, which on bad days spreads to my back and right breast.
When I was 13 I had a severe cellulitis infection in both hands, far worse in the right. My mom and I went to a physician at North Shore University Hospital, which is now Northwell Health. I complained of extreme pain, swelling, tenderness, burning, and blisters. The doctor told my mother I was crazy and my hand was not bad at all (let me mention that my mother is a brilliant, well respected, registered nurse). In fact, the doctor insinuated that my mother was attempting to obtain narcotics, thereby using me in the process. We returned home. 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. This was only the beginning of my misdiagnosis.
As I said earlier, 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 said the swelling was not a concern (they, in fact, did not think it existed).
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, my mom asked whether Lymphedema could be a possible complication. My surgeon completely disregarded 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 at the time was 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 the 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 19, 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. I remember sitting on the examining table unable to comprehend the situation. My life and my identity were softball. What was I without the game? To me, this was weakness in its truest form. I did not lose my arm, so why couldn’t I use it? The doctor had handed me a pitcher’s death sentence. Now in retrospect, I should have realized this diagnosis was far larger than “softball,” but at the time it was all I knew and all I loved. In my mind, I had to get back on the field, no one could tell me otherwise.
On the ride home from the doctor, my mom and I rode in silence. There was nothing to be said. My mom brought me back to my dorm and I tried my best to hold myself together. My fear was being perceived as weak. I was always capable of handling anything pitched my way. But, I felt like I was ready to crumble into a million tiny pieces. Luckily, my mom, and best friends, including my then boyfriend, and now husband, were there to pick up the pieces.
Over the next few months, I found a Lymphedema therapist, and I purchased compression garments. The first day I wore compression, my mom, of course, was there. She sat across from me at the local diner in Pennsylvania and we barely spoke. The compression around my hand was suffocating, the emotions blinding, and the pain unbearable. I was angry, confused, and desperate to find a way to play again. Over the next few months, I tried to appear strong in front of everyone. On the inside, a piece of me died. I allowed myself to break down only around Tyler, my family, and sometimes close friends.
I lost my sophomore year season on the field. But, I found one doctor, from many, who finally allowed me to give pitching a chance again. The next three years, my days were spent at class, practice, or Lymphedema therapy. My days were spent in bandages when I was not playing. My abilities were significantly impacted. I was embarrassed and ashamed at my own abilities. How could this be the same player? How was this fair? I did everything right, why did this happen? I shoved the emotional aspect of Lymphedema to the far recesses of my mind. There was no room for it and I didn’t have time to bother with it.
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 in the future 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 as a college student to make sure to have a clean compression glove, at the ready, in case I spilled beer on it. Instead, when it happened, I went to class smelling like beer.
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.
I finished my softball career at Lafayette College, but I felt like a fraction of the person I used to be. I was defeated, discouraged, broken, fragile, worthless, and damaged. I felt like a mirror fractured into a million pieces, or like Humpty Dumpty after he fell off the wall. And, unfortunately, no one could see it. Yes, those close to me understood in the best way they could, but the majority, even some of my own teammates just thought I was lazy and making excuses. I looked at myself in the mirror and did not know who that girl was anymore. At the time, I could not see that finishing my career was in itself an incredible triumph.
After graduating, I went to law school. I coached my little sister’s travel softball teams. But, it felt like I was ripping my heart out every time I saw the field. I never dealt with the diagnosis. I locked it up and threw away the key.
While studying for the bar exam, the emotions and the stress finally broke me. The rabbit hole was deep and I was falling fast. I sought counseling while studying for the bar exam. I was diagnosed with Post Traumatic Stress Disorder. I laughed when my therapist told me. How was that possible? There was no way what I went through was comparable to our soldiers who return from war. Again, I shut down, and refused to accept the new diagnosis. I stopped wearing compression and stopped treating.
It took me eight years to work through my stages of grief and reach acceptance. I kept waiting for this epiphany, for something completely cataclysmic. I was wrong. I just needed to work through the stages myself and stop being blinded by the pain and my emotions. I returned to therapy, I returned for treatment, I purchased my first home with my husband, and we brought home our first puppy, Benson, a rescue from Alabama. It didn’t happen all at once, even though it felt like it did. I think I came back to life and up for air slowly. Small moments began to heal me.
I believe that my family, friends, and my now husband, Tyler, kept me afloat those eight years, in ways they will never know. Without them, that rabbit hole may have been too deep for me to climb out from. My Tyler….we have known each other since we were 11 (or so we think!). I screamed at him and pushed him away so many times during the initial years after my diagnosis. He never wavered, he stayed by my side, he protected and shielded me. There is a reason I call him my rock. He loved me when I couldn’t love myself. As did my entire family.
After we purchased our first home in July 2016, and I returned for counseling and treatment, I noticed small changes. It took a little less effort to smile and to laugh. It didn’t feel forced as much. Then in October 2016, we brought home our little bundle of fluff. Benson gave me a reason to wake up early, and a reason to be outside. One morning, about a week after we brought him home, I was sitting on the deck throwing the ball for him. The sun was shining and I felt free. This was the moment I decided to live again. This was the moment I decided to choose me and to be me. I realized just how beautiful the world was, and what I missed those eight years. Don’t get me wrong. There were beautiful memories made in those eight years and it was not all messy. But, they were all stepping stones to get me back to being me again. It was a long journey. But, in the end, there is nothing better than hearing your husband and your mother say, “Welcome back Chrissy.”
I can see now that everything happens for a reason. The ending of my softball career was not as I pictured nor was it my fairytale ending. But, it was the ending that I was intended to have. As I read recently, “Everyone has their own shit to shovel.” Well, Lymphedema is mine. Recently, I have begun to realize that I was approaching Lymphedema the wrong way. I treated it like a softball game, one that I had to win. But, while in college, my idea of beating Lymphedema was getting me back to 100%, the me without Lymphedema.
I now see that winning is simply learning to live with Lymphedema. Unbeknownst to me, I did that during those eight years. I finished my softball career, I coached my little sister, I graduated college as a double major, I went to law school, I passed the NY and NJ bar exams, I married my best friend, I went on vacation, I honeymooned in Hawaii, I purchased a home, and I rescued Benson, who in turn rescued me. There is a life WITH Lymphedema, and it is hard, but it is beautiful.
Today, I am a practicing attorney on Long Island. I want to be active, I want to stop sweating the little things. It is easier said than done. And, I know for certain, that I will have trying days with Lymphedema. But, I will shovel my shit, and get right back up. I want to advocate for others, that’s why I went to law school. I want to help others. I want to be active again. Benson has helped me by making me walk and we’re starting slow because at this time, there is only so much my arm is willing to let me do. But, it will come.
By simply writing this, I hope someone can relate and not feel so alone in the process anymore. I also hope it will shed some light on the emotional aspect of Lymphedema. I desperately hope those who read it will not waste so much time like I did, but instead, reach out to others for support and help. I’m only now realizing how important that is.
My advice to those who also have Lymphedema: Don’t be afraid to ask for help. Don’t be afraid to cry. I was for a very long time. I was an athlete, I didn’t believe in crying. I thought it was weak. How very wrong I was. Don’t be afraid to let yourself feel. Don’t be afraid to try new things. Don’t let your limitations define who you are. Believe in treatment, believe in people, believe in support systems, and believe in yourself. I realized the main limitations I had, were the ones I placed on myself.
I’m not an overly optimistic and happy person. I’m not your typical “rah rah” individual. Honestly, I’ve always been compared to Eeyore, even before Lymphedema. But, as my little sister once told me, it takes more energy to be angry than happy. Choose to be happy, but allow yourself to be sad, and choose to get up in the morning with a goal, but also allow yourself those bad days because we all need them sometimes regardless of our circumstances.
My top three Lymphedema supplies, including my Lymphedema tip: Compression garments, night garment, and the POOL!!!!
I hope you find this helpful, or it helped to raise some awareness. Although this is the “new me,” I found the “old me” along the way and brought her back home. You only get one life, enjoy what life has to offer.
“The nicest thing about the rain is that it always stops. Eventually.” -Eeyore
Where you can find Chrissy: