When I Close My Eyes
Written by Lexi Uslu via The Coalition Against Pediatric Pain
When I close my eyes, I grow wings and fly; I use my wings to fly towards the sky. I abandon my reality of chronic illness as I soar towards freedom. Tonight, I am safe in my bed – away from it all… Away from my dreaded wheelchair and even more, away from the pain of living a difficult life. I fly to unknown places, and I meet new people; I have places to be, and I have people to see. My adventure comes to an end with the sound of my alarm clock piercing through the silence. It is morning now and my eyes are open. The adventure is over although one thing remains the same. I have places to be, and I have people to see.
My mother helps me out of bed, and I fall into my wheelchair. This is the beginning of what I know will be a difficult day. I am ten years old, and my connective tissue disease is misdiagnosed as a psychological illness. Pain pierces holes everywhere in my body every single day and I am told that it is my fault. School begins in an hour and the time is 6:45. I don’t eat breakfast because my stomach hurts. I am wheeled towards the car and lifted into the front seat. I look into the side mirror of the passenger side to see my reflection, but I quickly look away as I don’t want to see the sad girl who is looking back. When we arrive at the school, I wait for my mother to get my wheelchair out of the car. She wheels it over t0 the passenger’s side and I hop in. She pushes me up the ramp and into the nurse’s office to meet my student aide (Mrs. Read). Mrs. Read takes me to the classroom and all the other children are already there. They look at me and I am reminded I am different from their stares. I begin to get dizzy, so I must go to my “special room.” I have been having fainting spells and seizures that are predicted by my dizziness. The school’s solution to this is to make a quiet space where I can go, and the nurse checks up on me there and not in the office with the hope that no other child might see me have a seizure and become frightened. I truly wish I could be there; more than anything I want to be home. I feel so sick, but my doctor’s say I am fine and that for my “psychological wellbeing” I must attend school. Today is a bad day and I ask to go home. My dad picks me up about ten minutes later and says to me “I don’t know why they expect you to go to school.” I look down at the ground in embarrassment and never again go home early.
I was forced to join a program for children with mental illness. Mental illness was very poorly understood in 2010 (and still unfortunately is…). Due to their lack of knowledge in the condition they misdiagnosed me with, they treated me very poorly, and after three months (thankfully) my insurance refused to pay for the hospitalization based on the fact that I was getting worse, not better. I was told word for word:
The list goes on and on… During those six months, I experienced an overwhelming amount of physical and mental pain, but I never stopped living and I never surrendered my voice. My wheelchair wasn’t a cage; it was a speed bump. It slowed me down, but it didn’t stop me. I went on so many adventures and did so many things. My body was no longer reliable, and I was upset the doctors didn’t know what was wrong with me. I was upset instead of diagnosing me, they blamed something that really nobody can understand (especially at that time when mental illness was very much misunderstood). Life was miserable and hard, but every day, I challenged myself to find joy in my life. The sunshine in the blue sky, the birds who sing their beautiful melodies, laughter that rings through the air and smiles that can brighten the night… No matter how bad life gets, there are always these joyful things. No matter how sick, and no matter how sad, I have always at least attempted to find joy in some shape or form. Tragedy and illness are miserable; I know that well, but in my darkest days, I hide behind joy and small (but amazing) adventures.
One of my greatest adventures was the RSDSA fundraising walk in New York City. This adventure came at a horrible time in my life, but maybe that was the best thing about it. The walk gave me something to be excited about, and it was the perfect distraction to be able to fundraise from my wheels. Adventures are best with company, and for this adventure, I had plenty. We were the “Mothers Against Chronic Pain” and we had spent the past year preparing for this fundraiser. We had emailed all of our friends and family members. We stood outside of grocery stores and in busy parking lots; my wheels were not shy to the many miles bestowed upon them during our days of fundraising. The Mothers Against Chronic Pain was a friend group formed by parents from all over the country who connected through one commonality – all of their kids were sick and diagnosed with Complex Regional Pain Syndrome, aka CRPS/RSD. We raised money for a wonderful organization called RSDSA. RSDSA supports patients, families, and doctors associated with those who suffer from CRPS. I was first diagnosed with CRPS at the age of 7 and I have been delightfully involved with RSDSA since that time (I am now 22 years old). The Mothers (and others) against chronic pain were ready; we piled into our cars and we brought our walking shoes to NYC. My wheelchair had not stopped me from fundraising for this walk. That speed bump of a wheelchair barely slowed me down, and I raised over $3,000 (in the days before social media)). Now.. After raising all this money, I had one more job to do that was to complete the walk. The walk that I looked forward to for almost a year… Before I was in the wheelchair I had been determined to run, but that day, I brought my wheels. I completed the entire 3 mile walk by pushing my own wheelchair. I was determined that nobody would push my wheelchair besides me. Those wheels raced through those three miles. Something that I don’t tell very many people is that Prince Harry was at the walk and saw me struggling to push myself. His security guard went up to my mother and asked if he could push me. I took a breath as I was out of breath from racing my wheelchair and shouted. “Only I can do this!” Even at ten years old, I knew who Prince Harry was, but it didn’t mean a thing to me. What meant the world to me was completing that adventure on my own. When I finished the walk on that day, I was very proud of myself. I was proud not only because I had done something that even Prince Harry thought I couldn’t do, but more importantly, I made a difference. I raised $3,000 dollars to help people with the same chronic illness as me.
As I mentioned earlier, I loved my MACP family. This family consisted of moms and dads that were desperate to help not only their kids, but every child suffering in pain. Three years after the walk, the MACP family had grown beyond the original mothers and our name was changed to The Coalition Against Pediatric Pain (TCAPP). Although the name changed, the mission did not. Thirteen years later, our TCAPP family is still together. We are different now, but our mission remains the same… To help all children suffering from chronic pain.
As to my story… I was finally properly diagnosed with a disorder of the nervous system called Autonomic Failure. Finding this diagnosis took one new neurologist who took my blood pressure as I tried to stand and simultaneously fainted on the floor.
When I close my eyes, I grow wings and I fly. When I open my eyes, my wings, and my legs disappear one thing remains the same though… Life is to be lived and hope is to be had.
Please consider making a donation to RSDSA today!