This is a guest post by D in Colorado.
Fear of the unknown flooded my mind as my wide eyes watched the Nurses and Surgeons rush around the freezing cold operating room. Just a few hours earlier I was having lunch with my young family, now I’m strapped to an ice cold, stainless steel table in an operating room waiting fearfully for the mask and the countdown from 100. Pain wracks my body, emanating from my testicle. In the past few hours my testicle began to twist, slowly cutting off the blood flowing through my testicle. If surgery wasn’t done within the next hour I would lose the testicle forever.
I tried to focus on the ceiling tile above my ahead, but through the pain and the fear my minds eye wanders to my wife and young children in the waiting room. What might have been going through my wife’s mind as she tried to keep our children happy. At the time our son was 4 and our daughter was only 2. We were just starting out as a family, now I’m waiting on a metal slab for a group of strangers to cut into what most men would say is one of their most prized possessions.
All the worst thoughts were attacking me and then one of the nurses made a joke as she was shaving my scrotum and low abdomen. It helped to bring some levity to the moment but all in all it was one of the scariest times of my life. Out of no where I can hear my Mom’s voice as someone puts a phone to my ear. I calmed her down and told her I was going to be fine. I had know way to know that this 11 year long war with pain was about to begin.
I woke up from surgery amidst a room oozing with tension. The anesthesia didn’t mix well with my lunch, sending me into horrible nausea and vomiting. All the nurses seemed awkward when they helped me those first several hours after surgery. I remember waking up several times that night in a surgical haze to the sound of a late summers thunderstorm echoing through the Vail Valley. One of the times I woke up my urologist was standing at the foot of my bed, crying as he watched me sleep.
He noticed I was awake so he came around to the right side of my bed. Standing in front of me with the window of my hospital room right behind him, I could see the rain with each flash of lightning that lit up light up the dark room. He began to cry harder as he spoke. He told me that there was a major complication during surgery and that he had caused it. He sat down beside my hospital bed before telling me how he had cut far too deep when he made the initial incision into my low abdomen. When he did, he cut through the main cluster of nerves that runs throughout my body.
Sobbing he explained that he wasn’t supposed to tell me any of this and that I was in for a life of ungodly pain, that my life would never be the same as it was just the day before. We cried together for a few minutes before he had a nurse come in with a shot of morphine to help me go back to sleep. I awoke early the next morning, the low clouds from the nights storm were lifting off the mountains around the hospital.
I sat in bed replaying the nights conversation in my mind, half of me wondered if it was a dream but it was too vivid to be summed up that easily. When my wife came to see me that day I told her about it. She said that the surgical staff acted very odd when they saw her after the surgery. The Surgeon told her that there was a hiccup in the beginning of the surgery but all in all it was a success.
I remained in the hospital for 3 more weeks, all the while I was in hellish pain that just kept getting worse. The Doctors did all they could to keep me comfortable. No one knew that ever since the surgery, most importantly the slicing of the cluster of nerves, my lower five vertebra were slowly herniating, bulging and fracturing, while the bones around my nerves were closing tightly around them.
After weeks of agony and one attempt to go home, my wife noticed the area around my lower back was purple and bruised. This was the big clue that led the Doctors to understand what was happening to me. I was being consumed by a nerve disorder known as Reflex Sympathetic Dystrophy (RSD). When the cluster of nerves were sliced it started a massive chain of events that if not handled quickly would consume my entire body. The RSD found the weak spot in me, my spine, when I was a year old I had spinal meningitis.
Once the RSD hit my spine it infected my central nervous system and my sympathetic nerve. Once the sympathetic nerve is inflicted with pain, the pain never stops. Within 6 months the RSD had infected most of me.
It’s now in my feet, legs, torso, spine, back, neck, arms, hands, chest, scrotum, cock, testicle, and my bladder. The pain is constant, never ending, rarely ever yielding. I have good days and bad days, some days are so bad I cannot be touched. The RSD makes the skin burn and become sensitive to touch. Pain affects me ten times worse then someone without it because my nerves are always on. They are continuously sending pain signals to my brain. The mind can only take so much. I’ve passed out from the pain getting to bad, it simply shuts me down.
There is no known cure for RSD, nor is there a treatment plan because it affects everyone differently. Some people only get it in a foot, or an arm. So there’s not a blanket treatment for it like there is for other disorders. Specialists and Doctors call RSD the Suicide Disease. Some people can’t find solace within the chaos and it destroys them. I hope that my fate is far more beautiful than suicide.
Because of the Mohrriors I am much stronger as well as hopeful. I can feel when all of you carry me throughout the worst days and nights. In those moments I look back and see a thousand sets of footprints in the sand and for this, I thank you.
I love you all – Darrin
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