In August of 2012, the beginning of my junior year of college, a sudden pain seized my left knee. One week later, I could hardly stand. I couldn’t use crutches or even a wheelchair because of a yearlong shoulder pain that hadn’t responded to physical therapy, so I resorted to an electric scooter to get around. Even after months of physical therapy, not only did my pain remain unchanged, I watched in dismay as my other knee, other shoulder, and finally my voice eroded until all were just as useless as my left knee.
I tested positive for tick-born illness, probably contracted when I was ten years old. I had a small bullseye rash that the clinic said was too small to suspect Lyme disease. That’s when I started having insomnia, stomach pain and injuries to parts of my body that never completely healed. Classic symptoms of tick-born illness.
Over the last five years, I have visited countless medical professionals (both Western and Eastern), but no one has been able to able to help me get better. My quality of life continues to erode as sight and hearing have also been severely impacted.
My health journey has taught me many things. I’ve learned to be honest with others and myself about my suffering, while still communicating optimism. When I first started scootering everywhere, I felt angry, uncomfortable, and afraid of how long my pain would continue, especially since I was used to the physical lifestyle of most other college students. For the first time ever, I felt utterly isolated by the sheer uniqueness of my struggle and had a hard time telling people about it. So, whenever people asked me how I was, I’d respond, “Great.” Though this wasn’t entirely untruthful because I would feel genuine happiness from the contact with others, it took me a while to learn the benefits of opening up about my suffering—how hard it was that I could no longer lead outdoor trips, attend inaccessible parties, or even view myself in the same way as I did before.
The question, “Are you making progress?” frustrates me because it’s so much more complicated than that. But I try to explain anyway because I want people to understand. I learned that if I showed people the genuine hurt, while still exposing my hopefulness about my future, I could have more authentic conversations.
I’ve also learned how to hope for progress while staying grateful for the health I do have. It’s hard to keep seeing doctors when no one has been able to help, but there’s a part of me that knows I can’t ever give up. I know I won’t get better if I don’t believe I can, so I choose to believe. I draw peace from realizing how much I still can do: remember happy memories and experience the world that comes to me in my bedroom now.