“You keep a lot to yourself because it’s difficult to find people who understand.”
I traveled a third of my life in the search for a cure to chronic pain. My bike accident happened in a little town called Haddonfield, NJ. I was your average young teenager who was excited because summer had just arrived and I had three months to hang out with my friends, lay out in my back yard with a book, watch movies, have sleepovers, and just be a kid. Soon after school had let out for the summer, I decided to get on my pink cruiser and ride to the video store in town. I do not remember the bike ride there, nor the movie I rented but I vividly remember the ride back and the bag containing the irrelevant movie I had rented for the day. Who knew that a tiny plastic bag and a bike tire could change someone’s life forever? I was halfway home when that little plastic bag hit the front wheel of my bike tire and sent my entire little body into a stone wall. The senses we take for granted are the ones that I remember most five minutes after the biggest fall of my life. I remember the sounds of car tires coming to a stop and people yelling: “Are you okay?” I remember the intense taste I had in my mouth as I was eating a mint at the time of my fall. I remember the weight of my bike on top of me. However, I have no recollection of pain: just indescribable fear. Cell phones did not exist in the average person’s life back in 1994 so I could not call the only person I wanted to, my dad. Call me stupid, stubborn, or shocked but I decided to leave my bike and walk home. I told the drivers who had stopped that I was fine and went on my way holding that little bag in my left hand as my right arm had definitely stopped working. I knew I had broken a bone or two. I knew that my head was pounding but I had no idea that my brain was bleeding on the inside. Even before I realized I was very injured and my life had literally changed forever, I could not ask for help. Maybe I knew then, before the pain really began that no one would ever understand me again.
Hours later I was in an ambulance having the clothes I was wearing cut off from my body. Hours later I was saying goodbye to my family as I was rushed into surgery. I do not remember how I felt but I do remember the faces on the people I loved most. They were afraid and as I slowly fell asleep I started to understand the severity of the situation. I awoke the next day hooked up to a feeding tube, a catheter, and surrounded by other patients who were also in critical condition. I forgot about my fall and tried to get up, not realizing that I was connected to machines that would not allow me to move. Once again, I do not remember the pain I had to have been in, I only remember fear. I tilted my head the best I could and saw that my dad was asleep in a chair next to me. He awoke and explained everything that had transpired during the previous twenty four hours. I spent two weeks or so in the ICU and was then moved to a private room. The odd thing about the whole experience is that the only pain I remember was the pain of the nurses taking out my feeding tube. I remember my throat hurting more than my head. The rest of the summer was spent recovering from what most people never have to recover from: brain surgery. People visited me constantly and there were flowers, balloons, cards, stuffed animals and I was given any food I wanted. My loved ones kept telling me, the hard part was over. I was alive and just needed to rest and re-gain strength to go back to my ‘normal’ life. No one would have thought that the real pain had just begun. The hardest part was just beginning.
My hair grew back, my bones healed, and after about a year one could not tell from the outside that I had ever had an accident. I must have been told a million times how lucky I was but for the next twelve years, I felt like the unluckiest person in the world. Of course I remember pain now and for that matter fear. Chronic pain started slowly and I thought for sure that a neurologist could take away my now invisible pain. I had brain surgery and survived, surely this was just a bump in the road. This was not a bump, this was a never ending mountain I was facing. After the first neurologist put me on medications I hated and that did not relieve my pain at all, we tried another neurologist and then another and so on. After I had seen a handful of neurologists, we tried every specialist you can imagine: allergists, chiropractors, natropaths, massage therapists, various surgeons who promised to cure my pain by cutting off nerve endings from my face. I traveled to many different cities including Denver, Colorado in hopes of pain relief. I spent over ten years traveling to some of the most amazing places in the world that gave me no enjoyment, just more pain and sadness. The final destination was Rochester, MN where I spent about three months. It was there that I learned how to accept chronic pain and learned how to mange it without a cure, treatments, or medications. I never thought I would say that the small city of Rochester, MN is where my life began again. However, life as I had once known it has never been the same.
I have written this a few times before but for anyone who does not have chronic pain, please read the following if you have a loved one with this invisible illness. Brain surgery was a walk in the park compared to a life with chronic pain. I would have brain surgery every year if it meant that I never had this invisible illness. I did spend a huge portion of my life traveling around the country for a cure to chronic pain and I will never regret my decision to accept chronic pain and manage it naturally. However, I still have chronic pain but chronic pain does not control my life. I have had to change and adjust how I live my life to a degree a person without chronic pain cannot fathom but given my invisible illness, I would not have it any other way. My travels now come within myself. I do not need to drive or fly to a different place in hopes to find relief. My travels are at times more difficult now because I must travel within my own mind and body to control my pain. My travels with chronic pain will probably never end but the commute is a lot shorter. The journey with chronic pain does not ever end, one just has to find a route that is best for them.