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Living RARE: Jessie Birnbaum

Updated: Mar 1


Jessie describes finding comfort and exercise in playing volleyball, and how symptoms of multiple rare conditions started to overtake her day-to-day life


When I first got sick, I had no idea that my life was going to change forever. 


I spent my childhood playing sports—it was the way I bonded with my family. My parents took me and my brother to the local recreation centre every weekend and we each did our own activity (I loved the rock wall), then played a few rounds of “horse” or “knock out” before going to get our subs at Jersey Mike’s. Kat, the rec centre receptionist, warmly welcomed us every weekend, and we got to hear new stories about her grandchildren. The Jersey Mike’s workers knew our orders. I loved our little tradition. 


Every Sunday, my dad and I went to play open gym volleyball at a local high school. I started playing competitive volleyball at age twelve and was by far the youngest there compared to the college guys and adult men. My dad tried to keep up, but his athleticism from Division III tennis didn’t exactly transfer over to volleyball; making fun of him with the others was part of the experience. Over the years, he got better and I got older, and we slowly became accepted members of the inner circle. My dad and I went home and talked about all of our friends—we knew so much about them from playing together over the years, but never knew their last names or occupations. It was a weird little world of its own, but it was a world we shared together. 





When I moved away for college, I tried out for the club volleyball team. I had spent nearly all of my weekends in middle and high school either travelling for tournaments or going to open gym, so it provided some semblance of normal and routine for me. I also loved the sport and was happy to get exercise from something that wasn’t simply running. 


I made the team and spent my freshman year of college practising three times a week for two hours. When I wasn’t playing, I often went to the gym with friends or played in intramural leagues. My friends were also athletic, so every trip we went on together involved hiking, biking or some form of exploring.


Slowly, that life has been taken away from me. BASCULE syndrome, mast cell activation (MCAS) syndrome and postural orthostatic tachycardia syndrome (PoTS) have completely overtaken my day-to-day existence. 


My symptoms started as headaches… crippling headaches that once sent me to the emergency room to receive a “headache cocktail” that I’m pretty sure just put me to sleep to stall my misery. 


I experienced my first fears of “what if it happens while… ” yet was mostly able to continue with my normal life. 


Then the symptoms got worse. Nausea, dizziness, abdominal pain, night sweats, fevers, fatigue, rashes and much more. I no longer played volleyball. There was no time—most of my free hours after classes were spent going to doctors, researching potential diagnoses or sitting alone trying to deal with the pain.


I continued to go on trips with my friends yet ended up in the hospital on two separate occasions —one in Buffalo, New York, and the other in Asheville, North Carolina. My friends were amazing and gracious, but no one wants to be the friend that ruins a vacation because you have to sit in an emergency room for hours. 


My friends continued on with their lives, and I got weaker and sicker. The doctors and the medications weren’t helping. My days were consumed with figuring out my next treatment and way to calm my symptoms. My plans after college were heavily determined by my medical status, causing me to wait a year to start graduate school. 


While I have received a few diagnoses and have found some treatments that help, my days look very similar to the ones I had towards the end of college. I am terrified to commit to any plans in fear that I will get too sick and have to leave abruptly. I can no longer go to the gym. I can no longer climb on the rock wall. I can no longer play the sport I loved. I am lucky to have incredible parents who have found new ways to bond, like watching Designated Survivor on Netflix or playing Codenames together online. My friends have also been amazing, but it’s still hard for them to understand that I’m not the same person that I used to be. 


My limitations are vast, but I will not let that stop me from pursuing my goals. 

Yes, my life has changed, but along the road, my rare disease has taught me maturity, empathy, and perseverance in a way that I never would have even imagined… plus I’ve gotten pretty good at online Codenames!


 

Would you be interested in writing about your experiences with rare disease? Email hello@rareyouthrevolution.com for more information

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