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.
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!
A is for anxiety
B is for body dysphoria
C is for can't
D is for death
E is for escape
F is for fear
G is for gatekeeper
H is for hope
Sorry— sometimes I get confused.
Alcohol is for anxiety
Vicodin is for pain
Hormones are for life
Lasers are for nerve endings
Advocacy is for survival
Panic is my resting state.
I'm much better than I used to be, and that alone warms my insides as much as it terrifies. That a life of stacking bricks has amounted to something real. Very real. I'm real…
I take a selfie every day since I started my transition. This was me the morning after the election:
But then I picked myself up and saw this reflected all around me: in the hearts of my vocal allies and in the cries of those whose bubble had just been burst.
I've been blessed with empowering moments where I find myself encouraging someone who has never tasted the bitter affirmation wafer of oppression.
Panic is my resting state. Oppression, silence, displacement, and violence are my heritage. Survival is my muse and fully living my heart's desire.
An alphabet soup of loss in the desert while numbering the stars. My identity is politics. Every breath a rebellion. Every day a revolution.
Take my hand. Together we can fly.
"When tyrants tremble, sick with fear,
And hear their death-knell ringing,
When friends rejoice both far and near,
How can I keep from singing?
In prison cell and dungeon vile,
Our thoughts to them go winging;
When friends by shame are undefiled,
How can I keep from singing?"
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Trans Day of Remembrance 2016
Rest in Power
In truth, the last three years have felt like one huge transition for me. I could only start the journey in earnest a year ago because, before then, I just didn't have the spoons for such an adventure. I am privileged to be living at the right time in history when there are solutions for the problems that have tried to tear me down for as long as I can remember.
One of my most vivid early memories is gender dysphoria. I was 4 years old at the JCC preschool where my best friend and I would always play dress-up together. One day she insisted we get married. Sounded like a plan. But she took the dress and handed me the suit, tie, and hat. After putting them on, I looked in the mirror and was knocked back to see a desperate emptiness where my eyes used to be.
My chronic pain condition began at age 13, just as my body started committing hard to male puberty. Frustratingly, there was no clear cause for my severe constant neck pain. Testosterone powered rage fueled a spiraling fire of dysphoria, shame, fear, confusion, and doubt. None of my doctors and specialist could properly treat or even diagnose my "phantom pain". A war on two fronts.
Growing up as a judoka, my Sensei always told me that I was too strong. In truth, the only way I could cope with the physical pain and dysphoria was to push myself harder. If no one could help me, I resolved to be my own champion. Sadly some battles just can't be won alone.
Along the way, some part of me resigned to the fact that if I couldn't win, I simply had to manage the best I could— brick by brick and day by day. School. Judo. Family. Art. Friendship. Love. But a body can only handle so much pressure before it starts to break down.
For the next 17 years, I did what I had to do to:
Then at age 30, the miracle happened: I got my diagnosis (cervical facet syndrome) and soon after the treatment (radio frequency ablation). Only then did I finally open up to the world of possibility that had been waiting for me. On the eve of my 32nd year I began my medical transition.
And so with access to the right medicine, counseling, advocacy, a supportive family, and growing community, I continue to overcome these challenges on the path to living life on my terms. No more closets, manageable pain levels, and very few sleepless nights. There's no feeling quite like being able to finally start seeing myself in the mirror.
I'm one of the lucky ones.
p.s. I wrote this before 11/9/16. I wrote this for myself as a marker in the road. I wrote this for anyone who has ever felt lost. Just so there's no confusion: Always forward. Forward always.
I never used to put too much stock in wishing— Talking to god, or whoever else listens to quiet desperate voices in the dead of night. I remember being in grade-school, dreaming before sleep that life was different; that I had a another body to wake to. But the morning would come and so too the cold light of just another day.
Not that I wanted out of the game.
The world was still too beautiful and I was just too strange, stubborn, and loved to leave it behind.
Gamman: we endure.
But in April of 2015, I decided it was time. Time to embrace that small voice that I had carried with me on this strange journey and fulfill the dream that had eluded me all my life. So I took my grandmother's unused, blank staring daruma off the shelf and made a wish. I was thrilled to feel like a silly child again as I sketched in one of its eyes with sharpie. This past August, after nine months of HRT and over a year of methodically coming out to my family, friends, and community, I drew in the other eye.
Your wish is granted.
I don't know when the word transgender entered my vocabulary, but once it did, I learned that I wasn't alone. Just like other helpful labels like hapa or spoonie, this word had the power to affect change thru self-acceptance and acts of radical self-love.
I am the stubborn nail. I am a self-fulfilling prophecy. I'd like to think that my grandmother would be proud of that.