When I gave my middle daughter the name, Neeley, I had no idea it meant "Champion." It soon became evident; it was the most appropriate name for this feisty girl. She is truly a girl who approaches everything in life with her whole heart and today she has put her whole heart into sharing her story. You see, I have spent years writing about my children, but now it is time she shares her journey with you all, in her own words.
"I was competitive straight out of the womb. The day I came into this world I army crawled across the table while they were cleaning me off and wrapping me up. It is safe to say the nurses were quite
impressed. From a young age I knew my family was unique. I knew that not everyone’s siblings went to the doctors every week. I think I realized early on that I was not exactly like my brother and sister. When I began questioning my situation my mother explained that my siblings, Ben and Halle were sicker than the other boys and girls at school. She said Halle had a rare chromosomal deletion called 18Q, and she and Ben had an immunodeficiency (a weak immune system). The joke at family gatherings was that “Neeley is the healthy Heilman." Oh, if only that had held true.
I grew up jumping, playing, running the fastest in recess, and having a little too much energy for my mom and dad to handle. At the age of 5, my parents decided I should join a sport, I chose soccer. From my first day on the pitch, I fell in love. I loved the sound made when your foot hit the ball. I loved the smell of the short green grass. And most of all I loved the thrill of feeling in control of the game. Unlike the other kids who would stare at clouds and pick at the grass, I would shout “WE NEED TO WIN! Get on your MAN!" I progressed quickly as a player and as a leader on the field. I soon joined a
competitive team when I was 9. My team traveled, stayed in hotels, and played in tournaments. I met my best friends in the world through soccer. I became the person who I am today because of soccer. When I watched the 2015 World Cup in Canada with the best friends I had made in soccer, I realized my dream. I went back to our hotel and wrote on one of those little hotel notepads, “I will play for the Women’s National Team." I arrived home two days later and was told my sister's pain had become too much. The doctors had no more treatments and the best option for Halle, at only 15 years old, was end of life care, or hospice. From the day my plane landed from that world cup trip, I only had 16 days left with
Halle on this earth. Sixteen long, excruciating, and numb days. No one knew there would be so few days once she entered hospice, but we treasured each and every one. Those days were beautiful in a tragic sort of way. I wrote a song and sang it at her funeral a week later. You see Halle and I always watched Say Yes to the Dress during her infusions to distract her, so like other young girls, we had already planned our entire weddings. And I remember sitting in a church pew at her funeral, thinking, “I’m in a church saying goodbye to my big sister, who will be my maid of honor?”
I began investing myself 110% into soccer, not only as a distraction but as therapy. It was my escape. I practiced five days a week, had games on the weekend, and spent any free time practicing dribbling and juggling in my yard or taking shots in the net on our side yard. It was a sport I loved to play. I lived to play. However, I soon started getting sick after long tournament weekends and found myself exhausted most days. We went to the doctors and discovered my immune system was weak and I had developed the same immunodeficiency both my brother and sister had. I began treatment immediately and while no kid wants to be stuck with two needles once a week, if it meant I got to play soccer then I would do it.
Many coaches began noticing me and seeing the potential in a little girl who still wore pigtails. I was called up to a National Training Clinic where U.S. Soccer seeks out potential prospects. Simultaneously, I made an ECNL team in Tampa and began commuting an hour both ways to get the best coaching and best competition. I lived every day of my life for a sport. It was during this time that I sustained two severe concussions, one during a national training clinic and one during an ECNL game. The doctors watched the film from the second injury and were surprised how symptomatic I was. They ended up doing a full spine and brain MRI that lasted 4 hours just to rule out anything crazy.
A few weeks later the sports medicine doctor called us and said we would need to come in for the results. At this point we were freaking out. The doctor sat me down and diagnosed me with Chiari Malformation. Chiari Malformation is a disorder where the muscles and ligaments in your neck cannot support your brain, so the brain slips out of the skull a bit. The doctor said I could never play contact sports again. I was crushed. All my plans for college and almost all my identity was based on a sport that I could no longer play. Leaving behind the sport was one of the hardest things I have faced in my life not only because it was my passion, but because my teammates had become my sisters.
I left the doctors office went straight to the car and began researching heights of Olympic swimmers (which is like 6 foot by the way). I was determined to be competitive and achieve new athletic goals. The last thing I wanted to be seen as by my family, my doctors, my former coaches, or my old teammates, was weak. On the ride home from that appointment, my mom and I stopped at a sporting goods store and picked up a swimsuit, goggles and fins. I was ready to try a new sport, swimming.
I began training that summer. Because I started at 13, I was very behind with both technique and endurance. By the end of the summer, including 8-hour long training days, 5 days a week, I was about where the other kids my age were. I began to compete in small meets and felt like things had gone back to normal. Then the following fall of my 8th grade year I got a tear in my triceps and dislocated my shoulder almost weekly. Months of physical therapy did nothing and we finally went and saw an Orthopedist. There I was diagnosed with the connective tissue disease Ehlers Danlos Syndrome in which the ligaments holding my joints in place do not function the way they should. I was sick of being summed up in a few weird sounding diagnoses. I began weightlifting to help the muscles support the tendons and continued to swim.
Freshman year of high school, I was getting very sick in my classes and could hardly make it through the day without getting dizzy and disoriented. I had a few syncope episodes, and we went to the cardiologist. I was diagnosed AGAIN, with something called POTS, which is a condition where my autonomic nervous system does not function properly, and I struggled to maintain a healthy blood pressure and heart rate. By the end of my Sophomore year and beginning of my Junior year of high school, I was hospitalized in the ICU for what they thought was cardiac issues, and I had to take a step back and start to look at the big picture. (sidenote: they later found out I had a virus that mimicked cardiac issues)
At this time, I was again told my body was not equipped to be an Olympic level athlete, let alone a competitive high school athlete. I had equated so much of my self-worth towards my athleticism, and without that aspect of my life I felt like my diseases had won. I felt like I was a prisoner in a body separate from my own. If there is one aspect of chronic illness in teens that most people struggle to understand it is the disconnection between what you want your body to do and what its actually able to do and this past year, I have had to discover and accept the limitation I have been given.
I then transitioned to exercising for the sake of my health instead of competition and approached working out as a means to keep my body functioning rather than winning. It has taken time for me to get to this point, but I now know how truly blessed I am to have the opportunity to workout and exercise to keep my body functioning at the highest level it is capable of. I now run to condition my heart. I now swim to strengthen my stamina. I now lift weights to stabilize my joints and improve my blood flow. I now bike, golf, and paddle board for the pure love of being outside and enjoying challenging my body in new ways.
I am still learning to love the body I was given, and that is okay. From my chronic illness, I have experienced severe pain, underwent numerous procedures and countless tests. I have experienced critical care hospital stays that has altered my present and changed the outlook for my future. I have learned it is beautiful to be strong, but I have also learned it is acceptable to be weak in times of struggle. I have learned to take everything one day at a time, sometimes one task at a time.
But most of all, I have learned to love the people in my life who are my support system. They are the ones who helped me get to where I am now.
And right now, I am an athlete that no longer lives to play, but rather plays to live.
In the following months, my family found a two new cardiologist, that determined most of my symptoms were from POTS and encouraged vigiorous cardiac exercises. I found running to be the best medicine for my life. I learned my drive for exercise and weight training has reversed the symptoms of both my POTS and Chiari, allowing me to be that athlete again. I don't know where this will lead, but I do I will continue to listen to my body and let it guide me."
Thank you for sharing your heart with us Neeley Jane. You truly are a Champion! Your Voice, Your Story matters! Continue to share your journey with others as we all can learn a lesson from your story. May you continue to find the joy in being the athlete you are right now. I am so proud of you.
If you know a teenager or parent of a child/teen living with a medical condition, that would like to share their story, please email me at jillianheilman@gmail.com