Verified by 
Months ago, while I was celebrating my graduation to normal-person pilates class, I knew that the numbness and weakness in my right hand meant I’d need spine surgery. The symptoms reminded me of my first spine surgery, an emergency surgery that happened 10 years ago after my legs became paralyzed on a walk one Monday afternoon in the park. So I was scared. Like, really, really scared. Temporary paralysis is traumatizing. Emergency surgery is traumatizing. Not recovering from emergency surgery and needing further surgery is traumatizing. I only really started to recover psychologically four years after that initial emergency when I finally found my own diagnosis to explain why it all was happening, hypermobility-type Ehlers-Danlos Syndrome.
So in November, when I called the surgeon’s office and they told me my visit would be two months away, I slipped right into a magical thinking space, just like a warm bath. Two-month's wait meant it wasn't an urgent issue, right? Maybe everything was fine and maybe it’s normal not being able to use my right hand to clear the dinner dishes, or carry groceries, or type, or hold the leash during my dog-walks. Sure, maybe I was just getting older.
But obviously some part of me knew that none of that was true and kept waiting for my arm to drop dead at my side the way my legs did 10 years ago. In order to function, in order to parent and work and exist in the world, I put all that pent up fear and trauma in an enforced steel lock box in a hidden closet in the corner of my mind.
So then last month, when I finally had that surgeon visit, I was utterly terrorized. I had gone so deep into la-la land that I went to the visit alone, a total rookie mistake. Because when the PA was pointing out to me the functional instability of my cervical spine so visible on my x-rays, and showing me the images from the MRI where the discs are more or less gone and the bones rubbing on bones are squeezing the nerves to my arm and that the only solution is spinal fusion, I got a little lost in time. I was back in that emergency visit ten years ago, with another surgeon telling me I had to be admitted to the hospital right away because if I got into a fender-bender that could result in paralysis-or-death. I got confused.
I was looking out the window and the sky was blue and the sun was shining, and I could barely hear what the doctor was saying. There was a roaring in my ears. I was caught in the memory of waking up from that initial surgery in so much pain I couldn't tell if I was still alive. This random dude in a white coat was saying he wanted to fuse my spine at eight levels, that I shouldn’t go on my planned and much-anticipated vacation because if I fell down it could result in paralysis-or-death. And, in all seriousness, I couldn’t tell if he, or any of it, was real.
And that, my friends, is the epitome of trauma and trauma brain. After that visit, I tried to explain to everyone who loves me what happened and all I could really communicate was fear. I’m a lucky person with lots of physicians in my family. I happened to have dinner with my dad (a cardiologist) that same night who helped me parse through what I'd heard. My brother (a family practice doc) agreed to come with me to meet with the surgeon again the following week.
Hours later, after talking to them, I started to calm down. They helped me remember that I was not, in fact, paralyzed. I have a diagnosis. I am not helpless, I am not alone. I need a big, gnarly, nasty surgery, but it will ensure my arm doesn’t worsen (and will probably heal) and the procedure might also make it easier for my neck to hold up my head (which has been challenging for me since the initial surgery).
But the lesson is this - the chronic nature of chronic illness is relentless, and the resulting trauma is real. I write this blog about what I am learning and how I live with pain and with limits and invisible disability because a) it helps me feel a little in control and b) it warms me to think that the nightmare bucket of scraps that is my skeleton could result in some insight that helps someone else. But the truth of the matter is, I haven’t mastered this situation.
I froze the minute this illness jumped back up to bite me. Despite all my therapy and learning and PT and good diet and exercise and attitude and all the “right” things, I will need this kind of intervention every 8-10 years for the rest of my life. That’s the nature of my condition. And I haven’t figured out (yet) how to hold all of that. I haven’t learned how to keep all that fear and trauma out of that stupid lockbox and let it go, and to truly accept that this is my reality.
The challenges before me as I prepare for this next surgery and the six-months-to-a-year of recovery are huge. I need to not slip into the magical thinking place - I’m not going to be OK or heal heroically. It’s going to hurt and be frustrating and I’m going to need lots of help from lots of people. I also need to not slip into despair - I have this chronic condition and it sucks, but this surgery will go better than my previous ones because I have a diagnosis and I’m strong and fit, and I know much more about how to take care of myself and heal than I ever have before. I have family and friends and so much support that even if I can’t work for a few months I will be able to keep my apartment and feed myself and my kids, and be safe. I have to not fall into the victimhood “Why me?” of it all. It is totally unfair that I have to deal with this, but here we are. I can’t let trauma-brain run my life.
So, what have I learned? I am healing, I’m working and reading and talking and growing, and honored to share with readers as I do. And, I’m pretty sure this kind of on-going, consistent, terrifying and depressing trauma never really goes away. What I am beginning to suspect is that healing from the psychological harms of this, like the physical realities of my condition, will be a life-long process.
