That One Time, at Summer Camp...
When I was 15, I spent my summer at the most amazing all girls camp, and I was on top of the world. I was training to be a lifeguard, directing the camp play, teaching gymnastics, and finally kissed a boy scout (major accomplishment!). Our camp was split into two "tribes" that competed all summer long and I was leading my tribe to victory, with a complicated song and dance routine that was the crux of the competition taking place on Parents Weekend. I was flying.
Parents Weekend came and we owned the song and dance, a feather in our headband (literally). Then, everything came to a screeching halt. I thought it was another stomach virus, but it just didn't stop. I returned home to recover. I took my lifeguarding exam by phone amidst a plethora of medical testing. I fought to return to camp and my tribe won for the first time in five years. The picture above is of the moment we won, hugging my fellow tribe chiefs with a look of immense accomplishment and pride. I love that picture because I'm so worry free. I hate that picture because I'm so worry free. I thought things would get better, it was just a tough stomach virus. I had no idea.
I started my sophomore year of high school and could not stop vomiting. Chronic fatigue, phantom nerve pain, constipation so bad I had to go to the ER once a month when I could no longer stand up straight. Testing revealed I was in perfect health. I moved to home schooling. The doctors and school had me psychologically tested to see if it was all in my head. I couldn't stomach anything. I had a feeding tube inserted, needed IV fluids to ward off dehydration which included one lovely ER session of holding the IV in place on my thumb for 6 hours.
"More medication, more hospitals, more exploratory tests and surgeries. All of it make me sicker-mentally and physically."
The rabbi visited me-gave prayers. Was I really a charity case now? My family looked constantly concerned. I was exhausted. They found a result six months in--my stomach was only digesting 11% of my food when it should have been digesting 100%. That was the first diagnosis of many. Gastroparesis. Reactive Airway Syndrome. Chronic Fatigue. IBS. Anemia. And finally, dysautonomia- the root cause of it all. A not well researched autoimmune disorder. More medication, more hospitals, more exploratory tests and surgeries. All of it made me sicker-mentally and physically.
We went to a children's hospital in Cleveland and I remember having a mental breakdown in the airport. At that point, my incredible lion of a mother stopped the madness. It was enough. Enough with the poking and prodding, the diagnoses, and the hospital visits. We turned to other methods. Hypnotherapy, psychology, physical therapy, acupuncture, massage, all liquid diets. I improved. I started to feel better. We spent three painful weeks at The Mayo Clinic doing pelvic floor reconditioning up to six times a day to get rid of the remaining worst symptoms.
The only reason I graduated high school on time, the only reason I took my ACTs, got into an amazing college, and turned my health around enough to head into freshman year of college; was the tenacity, patience, and unwavering faith of my family. My parents always believed me, never doubting for a second that what was happening in my body was real. My sisters always supported me-despite the fact that my illness was severely impacting them in every sphere of their life. They kept searching, experimenting, and finding new methods. I found amazing, empowering tutors, a military-style principal with a heart of gold, and the right care team who lifted me up.
"I kept moving in spite of my body."
I entered college and led a more normal life. Dysautonomia continued to be a struggle with recurrent chest infections and bronchitis that would land me on steroids for a month but it was a fresh start. I gained true friends. A boyfriend who stood by my side no matter how much of a "lemon" I was (I know Nick, if you're reading this you're internally screaming 'YOU'RE NOT A LEMON!') and I love you for it. I drank and partied and excelled in school. I was so grateful to be able to participate in class. I kept moving in spite of my body. I got a great job in New York City and on most days do a pretty believable impression of a normal person.
If you're still reading (and I'd be surprised if you were) why on earth am I writing about this? It was hard. My goodness it was SO hard. I fell into a depression so deep I couldn't see the light. Almost all my friends abandoned me in high school (shout out to Hannah, who at 15 decided she'd stick with the girl with the tube!). I missed all the normal milestones a teenager has. It was a constant struggle and pain. I'm missing big details in this story because parts of it were so painful most of my high school years my brain has kindly blocked from my memory. And sure there's immense positives. This has shaped me--it taught me grit, strength, and creativity. I found amazing advocates, friends who stick by me and kindness in strangers.
"I smile and say "It's fine" more often than I'd like and honesty is hard for me because illness scares people away."
But it was an impossible, insurmountable mountain to climb that I'm still climbing. Despite avalanches, sheet rock falling, and my gears getting twisted. It still is SO hard. I have anxiety attacks, depression, and persistent and ever changing symptoms. I feel guilty when I don't take care of myself well enough and guilty when I don't indulge in what my friends do. I've made so much progress and have so much more to do. I smile and say "It's Fine" more often than I'd like and honesty is hard for me because illness scares people away. So, it's not fine. But, it will be fine. And I hope by you joining this tribe, I can help make it fine for you too and start a more honest conversation.