I never imagined I’d miss waking up to an alarm in the morning, or the dreaded mile I had to run during P.E. I certainly didn’t believe I’d ever miss the traffic while I was driving to school, or the flights of stairs I’d have to run up and down to get to class. Never in my wildest dreams did I think I would miss these everyday nuisances. Now, I wake up to the sound of my mom coaxing me to get up in spite of the fatigue. The mile is replaced with walks at a painstakingly slow pace. I often can't drive, so traffic is a distant memory. And stairs, well, those are a thing of the past.
Life can change, quite literally, in a heartbeat. It happened almost two years ago on a regular Thursday morning. I was sitting in class, working on a project, when I suddenly collapsed. I don’t remember much from that day besides dizziness and pain. I went to the E.R., where doctors told me it was simply a hydration issue. I left, not knowing I would be back two days later, taken by ambulance after an episode lasting thirty minutes. From there, the spells would become more frequent. Fainting once a day became the norm. The problem was, the norm kept changing. Before I knew it, I was spending days at a time bedridden and unconscious. Small tasks like walking from my bedroom to the living room became impossible. There were times I considered it a “good health day” if I fainted less than ten times in twenty-four hours.
As time went on, the rules of this new life became clearer to me. A doctor’s office would become my second home, the pharmacist would know me by name, and checking my heart rate became second nature. Compression socks, blood pressure cuffs, salt, and IV fluids became my new best friends. I quickly learned that as long as my emotions were as sterile and cold as the environment around me, physicians would take me seriously. The second I became too emotional or raw, I’d be written off as a dramatic, hormonal teen.
Everyone had an opinion. Suddenly, people’s seventh grade biology class would make them more qualified than any doctor I was seeing. I was told an array of diagnoses from non-medical professionals, from rare cancers to potential parasites. I was told to try all forms of treatment, including meditation, yoga, and herbs. Dealing with multiple chronic illnesses is hard enough on its own. While everyone’s input came from a place of wanting to help, it only added salt to the wound. I was open to trying things, but unsolicited advice only made things worse, and was always phrased in a way that made it sound like it was my fault I was ill.
I don’t believe that everything has to be a lesson. Healing is not linear, and while there have been days of mourning and pain, I am working everyday to focus on the beautiful highlights of my life. My unbelievably supportive family (I love you guys!), my sweet dog (Kylo, you're just the best), my kind friends (you know who you are!), and my amazing opportunities at dance and church are just a few examples of the beauty I can find in the suffering. So, while waking up in pain is so difficult, walks are slow, and driving isn’t what it used to be, with His grace, I will continue to move forward. And someday, I will take the stairs.
My Story by Lilly Joseph