In a few days I get the wonderful opportunity to celebrate the date of my paralysis and the increase over all these years of my chronic pain. Well that was an extremely dark intro and while yes I may be celebrating those things there is no one thing that has led to more personal growth, internal struggle, and pure happiness from within. On that note I’m going to talk about all the things I’m grateful for thanks to my recovery as I sit here writing this today.
The last 5 years I have been my own personal science experiment day in and day out. Whether it included applied past knowledge or I was just learning along the way once again I became the expert of my diagnoses learning what was best and worst for my recovery. With that knowledge I know I can tackle any task at hand no matter the time or effort it takes.
Having to be in a very committed relationship with my recovery despite all the struggles and even the times where I pushed my body past limits to where it got unhealthy. Every day despite wanting to fold and walk away I decided to fight it and prove everyone including myself wrong. It was the traumatic situations that I ended up in as a queer person with a physical disability that taught me to fight even while having flashbacks for days on end so intense I barely slept every night for a year afterwards. Knowing how far I had come and with the support of a few phenomenal friends I made it through.
3. Indomitable Spirit
Despite the hundreds of bad days I’ve had in this period I still got up every day and trudged on with a smile on my face. It was only this year that smile stopped being a mask of my physical and emotional pain, but hey we all have to fake it until we make it sometimes. This year I also started having flashbacks to the moment that my paralysis set in and I had to find the hope to recover instead of getting trapped in the fear of what was to come and the waterfall of tears pouring down my face.
4. A Modified Prospective
Trading one illness for another and adding a loss of some of my visual field in both eyes. Literally I see everything a little bit differently now. This is amazing I used to hate life so much and even with less joy than struggle in recovery the light has been so much more valuable post paralysis. It was the beginning of a streak of traumatic events that taught me to find the positive aspect in every situation. Now I am always looking for the lesson in the bad and appreciating the good.
5. My Authentic Self
My paralysis taught me that no matter how hard anything is I can make it out on my own so after my body was what I considered healed enough to begin my medical transition I did. With the loss of muscle mass the muscle tension in the left side of my body was conveniently reduced and it became easier to heal once again. As most trans people would tell you starting that process was the beginning to an end and removing that weight of not being yourself makes every day a lot easier. Yes I had to disown most of my family once I took those steps, but the self-love that took their place in my life more than made up for it.
I guess the really cliche thing to say would be I love my imperfect life.
I cannot believe that I started this beautiful and fulfilling medical journey to becoming who I had always been on the inside a year ago. So far my medical transition has been relatively seamless and fairly “straight-forward”. Other than some dosage adjustments here and there and the torment of dysphoria I experience as a non-binary person. The social transition (name, pronouns etc.) Has been a lot tougher. It has been an amazing year where recently I even started to see my inner me and not the toned fit boy I hid as for the longest time. In no way is being trans or transitioning easy, but just as I said in my speech, it is worth it no matter the struggle. For the first time in my life I’ve been at peace with my body and I’m still recovering from paralysis too.
At the beginning I truly believed I identified as female, but it did not take long for me to realize i was much more in the non-binary section of the gender spectrum and this was different because personally I experience bits and pieces of both trans feminine and trans masculine dysphoria. My dysphoria is the lowest when I present as androgynous as I can. I have always loved being kind of androgynous so it’s no real surprise that is where i am most comfortable, but with my now very feminine figure it can be harder to present androgynous without wearing a bunch of men’s clothes. Even at the beginning I had started doing facial hair electrolysis but I quickly realized it made me more dysphoric to not have the shadow or stubble so I stopped the hair removal and am enjoying letting it fill back in.
The social transition was the hardest especially because as soon as everyone that was going to roll with it started using she/her I changed my pronouns to they/them and gender neutral pronouns can be fairly hard for people to grasp. She Is still more acceptable than he, but there are very femme people who I let use more feminine pronouns or nicknames to identify me. It’s hard loving the chest I developed over the last year and yet sometimes wanting to tape it away and look as masculine as possible for both my own comfort and safety. I don’t keep anyone in my life that doesn’t respect my name or pronouns, which in turn forced a lot of people out of my life. I may not have a perfect body, but for once it feels like I am living in my skin and no longer a costume or mascot that I fully disassociate with
Above 11 months on HRT
Above: 2 years before HRT
I sit here a little overwhelmed at everything that is going on right now, but realistically I am coping pretty well. Both physical and emotional pain have been high for a couple weeks, and I’m doing what I can to deal and push through it. With my pain levels as high as they have been my progress has slowed, and I’m trying to accept this as just a step in the process.
Let’s start with the emotional pain: this week my brain acknowledged that a handful of trauma anniversaries are coming up all within the next two months and I’ve been using every coping mechanism I have. I’m lucky enough to know myself and exactly what I need in these times because, December and January have been tough ones for me for years now. My most used tools this week were: square breathing, meditation, physical activity, and getting musically creative. If you are struggling this season do not forget to reach out to someone you trust and talk about it.
Between a spike in my chronic migraines and recovery pains I have gone back to having more rest days than productive ones and being the perfectionist I am is quite frustrating. So much of this time is spent pent up on the couch staying as still as possible so I don’t make the nausea worse. Probably why I used to play three instruments that took little to no torso movement before paralysis haha. As the body heals and muscles grow so does the pain. It feels like every other day the pain is a new game. I have to wake up and take each day as it comes, no plan, only a general direction and the internal drive to continue to heal.
I am hoping that next week is at least physically easier so I can get some of my personal goals back on track. Whatever happens happens and will continued to be honoured as just part of the journey. How are all of you doing this week?
Everyone will tell you that recovery eventually gets easier. I am well past my half way mark and I have to say I cannot agree. There’s nothing worse than being so close to being able to do all the things you desire and yet all of them are out of reach still. So I guess all of recovery is difficult for different reasons. At the beginning it was finding the drive to keep going every day, in the middle it was the struggle of lost time because every day looked almost exactly the same and closer to the end it’s trying to not best yourself up for being so close, but so far away.
At the beginning one just goes on because they are told to, despite everyone and I mean everyone saying you’ll never get better especially after every treatment to try to correct it fails. You eventually begin to lose hope and direction and you resort to living each day just to get through the day in front of you. One day none of the tips or tricks you were given to help you work at all and when you find ways to curb it is where the next stage begins. The beginning was the worst for me because it also paired with the severe post op depression that comes with neurosurgery. I had to convince my brain every day that there was something to fight for even though most of the time I did not believe it myself.
The middle of my recovery was a strange stage where I became obsessed with finding the best ways to better my physical health. Every free waking moment spent running every possibility through ones mind of the exercises, stretches and activities one can try to get better. This was a stage where most things only worked in bouts, there was a fair bit of crossed pathways so it was a stage summed up by “One step forward and two steps back”. This felt like a plateau without further analysis, but really my body was trying to sort out its own problems, which on the outside appeared with what looked like severe muscle confusion. Then comes the final stage and final stage take: 2
In the second to last stage you are conquering recovery, have figured out how to thrive through both your good and bad days and are just itching to get back to a normal life without putting your health on hold again. This is where I am at, I can see the stars, yet I still cannot smell the roses. Every time you think you’re almost at the finish line it turns out it was a mirage and you’re going to have to fight like hell to not give up every day. I know that every other day I get a little closer, but still just wish I could pick up and start over where nobody knows my name. I’ve mastered my habits so on these days I try to just rest and maybe take a nap if I’m super trained.
I hope to get to the final, final stage within the next couple of years or so, so that I’ll be the fun life living person I used to be once again. Even if the rest of my life involves a couple of hours of physical therapy a day that would be a lot more manageable than eight to ten-hour days.
What have the stages of your recovery been, feel free to share them with me.
January 21st, 2014 the day of my paralysis was also the day I disappeared. Now years later I am still unable to participate in social groups or clubs regularly and nobody understands why. No it’s not that I hate being social, nor do I dislike everyone, but my social circles have definitely changed for those few times I’m up for more than just my recovery. Nineteen times out of twenty you will only catch me out at an event if I have not done anything towards my recovery.
Essentially I fell off the face of the earth. Before paralysis I was a social butterfly, out at every gathering where everybody knew my name and half of them knew my story. When people from that old life see me now it has been years since our last encounter and it usually starts awkwardly with, “what do you go by, you’re clearly transitioning”? Illness leads to isolation it could even be considered self-inflicted, but if I’m invited to something that I wont be able to fully fuel to visual or physical deficits there is a slim chance I will attend. I do this to prevent the cycle of frustration towards my body because recovery is hard enough on its own.
My social circles evolved to solely include people had gone through or are currently going through similar or relatable situations. I no longer see value in being around people who had no depth or struggle and were only concerned about tabloids and a facade. Part of living my authentic truth through this recovery is helping others to do the same. Chronic illness and trauma bonding are very real and have led to all the most beautiful and healthiest friendships in my life.
It is a huge struggle for me to only be able to be social once a week if I have had a great week with minimal pain, restful sleep, and no set backs. It would be a dream come true to br able to go out whenever I felt like it and I may not ever but one can hope right?
What do you struggle with that nobody seems to understand?
Yes recovery is painful. Yes some days you will not want to get out of bed. Yes the internal struggle will eat right through you on the bad ones. All in all the good days are worth it. At the beginning of my physical recovery the days with small wins were few and far between, but now years down the road they have become more frequent, which in turn makes it all a lot easier to push through. About once a week I have a day where my pain is so high that I cannot get off the couch but it is still worth putting in eight to ten hour days just to get my body back to where I want to be.
Even on those days when I have absolutely no desire to roll out of bed I remind myself that if I get moving my brain will release dopamine and the day will get better. Followed by having my physical therapy routine down to a bunch of things that I enjoy. When I got to a stage that I could make my recovery enjoyable I began to dread my recovery less. Mindset in recovery can make a serious difference in recovery so do not mope around like a “negative Nelly” if you genuinely desire a full recovery.
It Is not just physical recovery that is all about the small wins. Life in its entirety is about the little things every day that make you smile, or bring a glimmer of hope to your eye in place of your pain and sorrow. I am happy continuing to recover because even if my body only gets better at a task on a weekly basis it remains that I’m still a step closer to where I need to be. Some weeks it’s one step forward and two steps back, but I promise you’ll continue to get better. If you have any interest in finding out how I got to where I did three years after being left hemiplegic click here.
If there was ever a secret to paralysis recovery I would have to say that it is: indomitable spirit, and Persistence. Yes it is that simple the only reason I have continued to heal is because every day I continue to push my body to its limits. Maybe it had something to do with my high expectations of myself, my need to heal to transition, or knowing that neuroplasticity requires a “use it or lose it”, approach.
All of the above have been serious factors in my ability to stick with it despite all of the times I wanted to just say, “screw it”. Something I have yet to admit publicly is that I had big hopes to come out and begin my transition from Male to female the year I was paralyzed. For me that’s why paralysis was so devastating to me, I was finally ready to be myself and knew I needed to put that on hold for years before I could make it a reality. It was something that brought tears to my face often when i could not sleep in the facility. I admit I am not yet fully recovered and was even less so when I began my medical transition. Other than the deficits I continue to train and recover and I have been able to become the nonbinary person I have dreamed of since I was just five years old.
A huge part of my persistence was thanks to the therapist that told me I would never walk again on my own if I ever got that far. When someone tells me I am not capable of something I make sure that I can do said thing. This fueled some anger, which I took out by working my body to exhaustion every day for years. Fifty-six months later I still push myself to the point where I get so sore I cannot move my affected side. One day when I beat this I will be able to pride myself on the fact that I did the impossible.
No matter the situation if you can find meaningful internal reasons to pursue any goal, then there is nothing you wont be able to do.
Feel free to comment any questions about paralysis recovery or queer stuff and I will answer them as best I can.