I feel like one of those endangered animals that has been set free from a lifetime of confinement. The handlers opened my crate and just dropped me into the wilds of existing beyond the boundaries of constant chronic pain. Go ahead and embrace the day! Return to the freedom you’ve never tasted! Eat some fucking bamboo and move on!
I’ve been so heavily medicated and programmed by the convoluted yet narrow system of modern treatment for so many years— my mind and broken body pacing back and forth from doctor visit to pharmacy to never sleeping to chasing pain scripts to waiting on hold with providers REPEAT— that I still can’t see beyond the imaginary concrete walls. The result is that before I can begin to make progress on any given task, instinct tells me to turn around and lope back to the other side of my cage.
Every single day I wake up and am both grateful for the new relationship I have with my body and at the same time overwhelmed by the immensity of possibility. What’s a caged animal to do when given choices? When teased with freedom? How do I human? Anxiety and instilled fear rise in my heart before I can even brush off the covers— I am caught between my all too brilliant new world and the lingering whispers of panic dreams. Welcome to today! What’s on the to-do list? What’s on the can-do list? How can I possibly pick up the phone/ self-advocate/ eat breakfast/ leave the house/ do the thing?
A slice of life: For over a year and a half I’ve been taking very strong anti-seizure drugs daily for a seizure disorder that I don’t have. The two episodes were brought on in the summer of 2015 by a pain management drug I’d been taking for years at the max dose allowed for a human prescribed to me from before I had an actual chronic pain diagnosis (cervical facet syndrome), treatment (RFA), and lost 80lbs. Secret side-effect: MAY CAUSE SEIZURES.
There were other minor and major side-effects from the side of the bottle that I had started to notice after the first seizure, but no one connected the dots. No one except me. As soon as I had my second seizure in two months while on heavy anti-seizure meds, I called my pain specialist and he immediately had me stop taking the nefarious pain med.
Even in the hospital, every EEG I’ve had taken has come back clean. Hmm… Could it possibly have just been the drugs?
My current neurologist still won’t believe this narrative. He has his own perspective and that is all that matters. He could see me following his plan for the rest of my life. I didn’t have it in me to confront him and press the issue too hard back in early 2016. I was just starting HRT.
We make choices. We compromise. We surrender. Months pass and hundreds of pills saturate my body, filling my mind with the Cerberus of paranoia, dread and self-doubt.
It took a lot of energy and self-love, but I advocated for myself this week at my annual check up with my PCP. (Did I mention that I have six doctors?) After summoning a fist-full of spoons, I have in my hand the referral script for a new neurologist for a second opinion. But while I left the office full of success, instinct and panic kicked in: “put me back in the cage.”
Thankfully, I have insurance. Mercifully, none of my doctors dropped me after I came out. Luckily, only one of them asked if I’ve started getting my period 😉 The cage has steadily lost its allure as time goes by. I surrender to the notion that pain defined most of my life and shaped my world, but that doesn’t mean allowing myself to suffer any more simply out of habit.
I am going to do the thing.
Last year, almost to the day, a black star consumed the sky.
"I don't know where I'm going, but I promise it won't be boring."
— David Bowie —
The future is for us to decide.
Sing for the dead. Cry for the living. Dance until the world crumbles beneath you feet.
Always forward. Forward always. This is why we fight.
Thank you for being here.
"This is why
Why we fight
Why we lie awake
And this is why
This is why we fight
When we die
We will die
With our arms unbound"
— The Decemberists, This is Why We Fight —
I sit here writing in the surreal warm glow of another glorious Florida winter with my pregnant wife and loving in-laws while Chicago and the rest of the world seem to be freezing over. A new age is rising and everyone has their opinion of when it started and who to blame. In reality, we are always living in the middle of a how. Rome is burning and it only feels fitting to be strumming along on my ukulele while staring down an alligator in my pajamas.
That said, most of me feels so liberated and happy; to be genuinely living for the first time. If that means launching into a time of fear and struggle, then I couldn't imagine being more prepared. Every carefully placed step of this journey has brought me closer to the world. From what I understand, this is the part where you meet the edge and jump; this is the part where you fly.
In my experience thus far, there isn't a single process more intentional than trying to get pregnant while transitioning. The day I started hormones in 2015 was also the day Steph and I found out we miscarried. This has been our hell and back year. Two IUIs, patience, and tidal waves of hope and support later, here we are. While heroes fall and pervasive hate continues to rise to the surface, for me all of that loss is wrapped up in the old identity I used to carry, jettisoned off like a rocket-booster on my way towards the stars: action/ reaction.
I can't wait to meet the new person that my love and I have created. I can't wait to see how they will make this world a better place.
I know that whatever our kiddo does, they'll be a rockstar.
Here's to 2017 and the next adventure!
"You get what anyone gets;
you get a lifetime."
— Death, Sandman —