Some days it feels like the sutures stitched into my skin are the only things holding me together. Some days it feels like the bones fused into one are the only reason I’m not falling apart. Some days I feel that if it weren’t for my skin, I would just be a puddle of pain. Some days I am. Some days I can’t handle the grief of losing everything that people can’t see. Some days I crumble under the pressure of my own body but I still have a test to go to. Some days I get everything ready so that the next I don’t have to get out of bed for longer because I know I won’t be able to. Some days I plan my outfits so my crutches or aids won’t stand out. Some days I’m able to get off of the couch. Some days I can’t.
I didn’t lose everything at once. It happened slowly- quietly- until I had nothing left. Soccer was the first spark, the first domino in my chain. A ligament torn, bones moving, a foot that couldn’t seem to heal. Everyone told me back then that it was temporary. I waited for answers. I’m still waiting.
My injury never shattered my bones, but it seemed to shatter everything else. My lisfranc ligament was gone, and with it the ease of walking. Bones ground against bones. I had four surgeries, two of which failed. Each time a knife cut into my skin it left another scar that never healed quite right. Ligaments were taken from my arm, bone marrow from my knee. My body felt like it was being cut and stitched into someone I didn’t recognize.
During that time, I was put in boots, wheelchairs, scooters, crutches, the whole ‘shebang’ as some would say. People always had questions, and I had answers, albeit complicated ones. I wore every cast color I could, joking about it with my peers, raced people down hallways. I hated it, sure, but at least people could see it, could validate my pain.
The worst part didn’t begin until everything was supposed to be fine. Every test came back clean. Every scan came back perfect. But I didn’t feel better. Every doctor said to give it time. I missed having time. Time that was joyful. Time that was pain-free. Time that I could spend doing whatever I pleased. I didn’t have any more time to spare. None of them ever understood that.
The diagnosis came months later. I had Chronic Regional Pain Syndrome, CRPS for short. In a basic explanation, it’s a neurological condition that occurs after a lot of trauma to the body. My brain got so used to sending pain signals that it never stopped, and instead sent them continuously, despite there no longer being an injury.
I was sixteen when I was told it was forever. CRPS is a life-long chronic pain condition, ranked 42 on the Mcgill pain scale, more painful than non-terminal cancer or getting a finger amputated without anesthesia. It’s even nicknamed the ‘suicide disease’ because 15% of people with CRPS commit suicide. I went home and cried that day. Quietly. Alone. I cried until there were no more tears to fall, and my hands grew tired of rubbing my eyes. My world stopped. Everyone else’s had kept turning.
I did the therapy every day at 5:20am. I met with doctors every Thursday in Rochester. I had to push through the pain, pretend I was fine, so my brain could learn the lie. Four months later I achieved something close to relief. I thought it was over. It wasn’t.
Then the pain spread, and fatigue took over. Hospital trips became a weekly occurrence. Months went by before a doctor gave me answers. Autonomic Nervous System Dysfunction. Another condition with no cure. Another condition that meant nothing to others, but everything to me.
I walked out of that office angry. I’d never been mad quite like I was on that day. I was angry I wasn’t done. I was angry there wasn’t a clean cut-and-dry solution, that there was no cure. I was angry because it didn’t feel real. For the past year no one could visibly see my pain. No one could see what was wrong with me. Everyone assumed that I was better. And this was just another hidden diagnosis that meant nothing to others, but made my world crash and burn. They would see it as a small thing that happened, but my world ended when it happened to me.
My world is still changing, my health journey isn’t done. I still have more diagnosis to confirm, more specialists to meet, and more tests to run. It’s exhausting, trying to find answers that doctors don’t believe are there, going to appointments just to not be heard. It’s hard to explain to others what’s truly wrong, or how I feel. I still look into the mirror and question who I see. The girl I once was is gone, and I’m trying to grow accustomed to the person I am now.
During this time, I’ve worked on myself. I can’t ride my fourwheeler every day, or go snowboarding all the time. I can’t play a sport full-time or do what I used to. And I learned to live with that being okay. Now, I go outside and play catch, or play a kickball game when I’m feeling good. I don’t buy a season pass for snowboarding, but I still go when I can. I’ve decided to dedicate my life to making the technology so that other kids don’t have to go through years of torture to receive treatment for conditions and cases like mine. This past year, I presented a spoken word that talked about my struggles with faith during that time to spread awareness about chronic conditions.
So what’s the point? What is the big reveal of the moral of my story? Honestly? I’m not sure I’ve quite found it yet. As I read the poetry I’ve written over the past few years, and the journals I’ve kept, I keep looking for the silver lining, the lesson I can share with others. I don’t want to say “it all gets better!” because sometimes it just doesn’t. I don’t want to say “The light is at the end of the tunnel” because my tunnel still feels like a maze, and the light seems non-existent. I’ve come to this conclusion: There is no final page, no neat resolution. But I’ve stopped looking for one. Instead, I’m learning how to live in the middle of my story, even with all its questions, pain, and small victories. I can’t choose my ending, I can’t force it to be the way I want it, but I can choose how I show up and face it when it does come. Whether that be on a day I’m using crutches or not, I want it to be with strength. So, even if sometimes it feels like stitches are the only thing keeping me together, I can continue to live knowing that one day, the end of my maze will come, and my story will have a happy ending.
Author’s Note:
My essay, “Some Days”, shows a small part of my struggles with ‘invisible’ disabilities. When people look at teens, they don’t expect them to be sick or to have chronic pain, and without physical representation of those, it’s easy to feel unseen. This piece reflects my reality, even if most people don’t see it, and I hope it encourages others to know they are seen, even when they don’t feel it.
Grace Short | 17 | Groton, NY | @gracefullysickening on TikTok & Instagram
