We all experience pain. As a kid I ran and jumped (and fell), scraping an elbow or stubbing a toe, and popping right back up. I grew up, had minor surgeries, and experienced headaches and sore throats. Sometimes stuff hurts, and I accepted this as normal.
My understanding of pain changed when my face caught fire.
Not literally, although there were certainly times I wished there were flames shooting out the side of my head, smoke signaling something real was there. It was invisible, and unpredictable. First, there was a buzzing, and that burning sensation. Then there were jolts, lightning striking, hot white bolts exploding, over and over again. There was fear, and confusion, and trips to dentists and doctors, and eventually the ER. There were MRIs, and neurologists, and eventually, a name:
Trigeminal Neuralgia.
A name! A disease I could research, information that existed, other people who had experienced it, and suggested treatments. So I read, and I changed my lifestyle, tried multiple different medications, and eventually settled into a new life – not worse, certainly not better – but one in which I lived as big and boldly as my face would allow. (Because my face was certainly calling all the shots.) It was fine.
And then I fell.
Five years later, I fell and broke my elbow. A surgeon put me back together, gave me a big purple cast, and when it came off I trotted off to physical therapy to rehab the arm. It was slow and painful (as I expected), but it wasn’t the elbow that was hurting most – it was my hand. Not long after surgery, it was swollen and burning. At first, I wasn’t overly concerned (after all, everyone told me it was a nasty break), but then it didn’t go away. The burning was constant, the swelling unusual, and my skin was starting to turn shiny and mottled. It often felt like my hand was being crushed, or set on fire. It was painful, and terrifying, and traveling up my arm, and – eventually – it, too, was given a name:
Complex Regional Pain Syndrome. CRPS.
Another name I could research. Another strange neurological condition, another part of my body seemingly outside of my control. More pain, except this one never, ever went away. Trapped inside the pain and a health care system that was making access to professionals increasingly difficult, I started looking everywhere for solutions. And while I found plenty about poor prognoses, expensive (often unproven) treatments, and how befuddling the condition can be, I also started finding something I hadn’t come across when I was combing through the medical literature on TN:
I found hope.
Not for some magic cure (although I’m doing everything I can toward remission!), but for living a life that isn’t consumed by pain. I started reading less about the disease, and more about the body and brain. I discovered scientists and health care providers who have not only been doing interesting research, but are translating those findings into language that can be understood by patients. I found a way out of the fear, and I found the less I feared, the easier it was to separate the “ouch” from the pain.
Like I said, I found hope.
I’m still in pain. I still get trapped in cycles of despair and fear and feeling sorry for myself. I still feel very alone a lot of the time. But I’m also learning that hurt doesn’t equal harm, and that moving through the pain can bring relief. On the good days, I’m grateful for the CRPS and what I’ve learned because of it. My face doesn’t have to control the shots. My arm doesn’t get to be in charge. My brain is translating unhelpful messages into pain, and so it’s my brain that needs to be rehabbed just as much as my elbow.
And as I’m doing that, I’m realizing just how much bigger and bolder my life might be if I had come to this place sooner. As I’m stumbling along, finding what helps me (and doesn’t), I’m realizing that my experiences and the information I’m learning might be helpful to others. I hope to share, and in doing so, to help relieve someone else’s “ouch.” I’m also hoping that my pain-addled memory might recall a little more of what I’m learning if I actually write it down.
And, if nothing else, I hope all this typing with my left hand will be good therapy.