First, this is not me today. This was me exactly 4 years ago terrified and scared laying in the ER as my legs had gone completely paralyzed. I usually kind of gloss over this anniversary of the beginning of the complete falling apart of my physical body as it was the beginning of a couple severely emotional years from me that needed to happen to be where I am today.
I’ll give you a tiny backstory of what happened and what the diagnosis was. About a month before my 40th birthday, which was April 17, 2016, I began to rapidly lose weight. I thought that was amazing and didn’t think about the fact that it’s a huge bad health warning sign. I also began having electrical pain on the top of my right thigh. I saw my primary care. She was baffled, but as the pain intensified over those short weeks, she said to call anytime as she was clearly concerned, but she was stumped.
At nearly 5 pm on April 27th, 2016, I was sitting in my psychiatrists office when my legs rapidly were losing feeling. I saw the time and said to the psychiatrist that I had to call my primary care. I was immediately put through to her and told her the electrical pain was all throughout my legs, but I also felt like I was losing feeling. She told me to go to the ER immediately and take an ambulance.
This wasn’t any big deal. I was fine. I’m just dramatic, right? I walked out of the psychiatrists office and fell over in the parking lot sealing my decision to go to the ER. I don’t know how I made it, but I pulled up at the ER front door where security asked what was wrong. I apologized that I couldn’t park my car as my legs were painful, but I couldn’t feel them and would fall over.
I don’t remember much except I’m sure the security parked my car and was whisked back to a room in the ER bypassing the dozens of people waiting. The regular ER doctor looked afraid. A neurologist showed up soon after who did the standard neurological exam that I apparently failed as I was immediately admitted.
I was told I was getting the “MS work up”. I didn’t know what that meant. A long day of full brain/spine MRIs that took 3 hours in that tube followed by a lumbar puncture had the neurologist come in on April 29, 2016 to announce I had transverse myelitis.
You say “transverse what?” It’s an autoimmune disease that your immune system attacks the nerves in your spinal cord with a huge inflammatory attack. I had my lesion in my lumbar spine, which actually classifies me as having a spinal cord injury. I was lucky. People with lesions in their neck end up quadriplegics. Some people with transverse myelitis recover. Some never do. I fell into that middle category with a partial recovery.
Transverse myelitis isn’t my main problem today. I have other autoimmune diseases as well as neurological diseases that have been diagnosed. I also have incredible assistive devices including my sidestix forearm crutches custom designed for people with disabilities to enjoy the outdoors and my beautiful sparkly pink custom wheelchair.
In those few months after my transverse myelitis diagnosis, all I could think about was getting back to normal life, which was a job that totally stressed me out no matter how much I loved it, and my multiple psych meds that were treating and creating problems that didn’t exist.
It was a painful couple of years as I had to quit that job, sell my house, leave a place I had lived for 30 years to go live with my family in another state. I was absolutely devastated.
The beauty is I met a psychiatrist who believed in me to begin the process of weaning me off the psych meds and all that time with my family landed me in intense trauma treatment that gave me time to really reflect on how I wanted to live my life. My physical body was miserable, but I didn’t want my mind to live in that constant misery anymore.
I am facing an urgent surgery in the time of Coronavirus exactly 4 years to the day of receiving my transverse myelitis diagnosis. It’s two days from now on my pacific daylight time zone.
Of course any upcoming surgery is scary, but I go into a surgery in year 3 of being psych med free. I go into surgery almost entering year 3 of being on a strict anti inflammatory diet. I go into surgery nearly on my 1 year anniversary of beginning iyengar yoga. I go into surgery just slightly after my 1 year mark of being inpatient in the medical hospital where I met a treating doctor who had transverse myelitis too and told me her inspiring story of hiking again with her crutches, the freedom a custom wheelchair in making her mobile, and she lifted her pant legs to introduce me to the concept of AFOs, which are the exact braces I wear to avoid foot drop that caused me to fall and break 7 bones in two years.
Most importantly I go into surgery recognizing that I will always be revisited with misery as a survivor of severe childhood abuse, but I also know genuine joy. I also enter surgery with people who surround me with genuine care and compassion that I worked to cultivate in a healthy way. I enter into a surgery appreciating my quirkiness as being unique and special.
I also know that my misery isn’t unique to being a trauma survivor. You can have a loving and supportive family and still be very pained as a couple people have honored me to get to know that.
I go into surgery knowing that it’s exactly 4 years apart, but I am vastly different. Trauma flat out sucks. It feels as though it robs you of your life force. It does until you take it back to be bigger and brighter than you could have ever imagined.
I still grieve not having family. I grieve that my childhood years should have been safe and supportive, but I was instead given plenty of horror that played itself out for years.
I go into my surgery with healthy fear and no matter the outcome and what the surgery says is causing these extremely troubling problems, I know I persevere. There will still be moments of “why me?” and anger and huge feelings of loss. I also continue to remind myself that joy is my human right no matter what.
Interesting the timing of things as it gave me time to reflect and give myself a huge self embrace to say I’m proud of myself.
Trauma recovery is never easy. Throw multiple chronic illnesses on top of it and life can feel unbearable. It doesn’t have to. If your brain is lying to you that you are terrible and need to hide, what is one thing you can do to counteract it? Yes, we are supposed to essentially be isolating in a time of Coronavirus, but it doesn’t have to equal constant misery. I still have my moments, trust me!
My traumatized rescue dog is finding his joy right along with me.