From a book signing to my transition to finally beginning to tackle the plateau in my recovery that hit me at the end of last year and a six month pain spike where I accomplished nothing. This year has been anything but ordinary. This year was one of those make it or break it years that has prepared me fully for whatever comes next and for all I am hoping to accomplish over the next 12 months.
I’m an author that learned that I truly hate running my own reading and signings and if I ever finish my next manuscript I will pay someone to do the talking and just sit there and sign books. I read that book so many times in editing that no I don’t want to walk the length of a room and read it to you aloud haha.
My transition has been an emotional rollercoaster, no joke I cry every damn day and I’ve learned to accept that happy me is an outwardly emotional person and that has taken quite the adjustment. Almost 13 months into my medical transition now I have almost found my ideal balance between Male and female to match my nonbinary identity too. I know that the changes will continue for years to come but I could be finished my medical transition at some point this year with any luck.
In regards of my recovery I was lucky enough to start healing again and further regain some mobility. I hope that within a couple more years I will reach that full recovery and have equal strength and ranges of movement in both halfs of my body. More than anything else my paralysis taught me the patience I needed to slowly work towards a goal without seeing much progress and not lose my mind. In less words it fully readied me to transition even though the timelines now overlap.
The last 3 months since I got my worst recent pain spike controlled have been so good to me. From closer friendships to bigger goals and realistic timelines I got pretty lucky this year even counting the six months I was the living dead on a couch. I hope that all of you are equally as excited about what this year may bring.
I would like to start off by saying I’m sorry that I have been AWOL for a while and I miss interacting with you guys. Up until the holidays i have been trying to mentally prepare to see my family this holiday season and it did not work. I only know a couple of people who normally do not struggle with the holiday’s and these people were on the same ship sailing to the same unknown destination.
As rough as these last weeks may have been I can say that some awesome things happened too. For example I got the chill with a bunch of friends instead of seeing my disowned family on the twenty-fifth. Thanks to struggling with my upcoming trauma dates I have been tackling my mind with obsessive amounts if exercise and have made some progress with my micro movements. Seeing the good in the bad has been one of those beautiful skills I had to learn since hemiplegia
Spending the holidays with a bunch of queer friends where nobody’s gender identity was an issue or hot topic was nice. It may have even been the first time I ever got those warm fuzzy holiday feelings that I have heard people rave about my entire life: Pizza, board games, friends, laughter. The kind of event that makes me not want to spend another holiday with someone that shares a gene pool or bloodline with me ever again.
I need to slow down again I have been pushing myself too far for too long and it is probably why my pain is high resulting in varying levels of sickness. I might even make it a goal for next year: be less sick haha. I hope you’re all doing well and are having love filled holidays.
Earlier this week I was honored with the opportunity to speak about my experiences as s transgender person at an event tied into the transgender day of remembrance along with help out with a couple other events. This was the first time I have ever spoken about the violence I experienced as a trans person and it was a truly amazing experience even with a darker topic. Even with its hiccups I will admit the day was a success
While projecting my words with several cracks in my voice my eyes welled up and I let it all out in a full room of strangers. This was a level of raw vulnerability I had yet to experience. The room welled up with me and laughed with me when I tried to lighten the mood by joking about the cooler happier things I have accomplished like my recovery and my novel. They appreciated the attempt and let out a chuckle. It was incredibly intimidating, but everybody in the room was an ally solely there to be better allies to the community. With a few days to process the event I can say that personally, I found crying in front of a room full of people to be cathartic and emotionally I feel lighter and happier.
My community may not be the best, but over the last few years it has gotten significantly better thanks to allies stepping in and joining the fight to a better tomorrow. The other members of the society I was representing were equally emotional throughout the day and at the end saw the day as a success. It may have been tough and the reason I have been quiet for a while, but if I am available next year I hope to partake again. There is literally nothing more rewarding than a day of healthy, open conversation with people who are just trying to learn.
P.s. I’m going to try to get back into a weekly post for you guys.
I’ve been in recovery for almost 58 months, also known as almost 5 years and along the way I have learned quite a bit about my own body and other people as well.
- Nobody will understand why the recovery wins are so amazing.
- You will likely be resented for focusing on yourself
- You aren’t ever less exhausted
- Each day is as much of a struggle as the last
To someone who has had to modify everything they do for years when you start to do even minor things the way you used to it is amazing. Fully able bodied people will not understand why you are ecstatic just doing a basic every day task. I had to train a couple people in my life how to respond when I excitedly share recovery progress with. All it takes is mirrored enthusiasm. Every time a part of my body moves or looks more like it used to before paralysis are the highlights of my week no matter how small the difference.
I cannot count the acquaintances and friendships that faded because I did not have the time or the energy to see them as much as they would have liked through my recovery. I’m a social being I can and will make new friends when I want to haha. I know I fell off the face of the earth and one day when I’ve healed and am ready I’ll get out there again. I used to be out at every event, I spent at least 3 nights a week out doing something or supporting a cause. My quaint little recovery life was shellshocking to me too.
No matter what you do as your body heals the exhaustion is real. Surprisingly a day of rest is just as tiring as doing hours of exercises. This is a recovery point that is just downright cruel. Thanks to rest days and exercise days being equally as tiring I’ve learned to just push through the chronic pain and take way more exercise days than one should. Eventually you end up living in chronic pain for so long that there are levels of pain that your brain doesnt even recognize leaving pain spikes so detrimental.
You would think that as your body heals you would be less frustrated with your body day by day. Haha nope, as the tasks you cannot achieve perfectly become hinged on the most minuscule need for improvement it gets more and more frustrating. My roommate has finally learned that when I’m bitchy it’s mostly just at my body for still not being where I would like it to be physically. I miss training in sport a few times a week. I turned into a recovering hermit just so that one day I can be the athletic social butterfly I once was again.
If you’re reading this right now there is a chance that you’re wondering what the next step to living your authentic and potentially less boring life. I get it every step I took between childhood and now was on for safety and to position my now disowned family further away so I could be as happily queer as queerly possible. I do not care and I do not want you to care at all about what the societal norms are, because if they do not match up with your happiness they do not really matter.
As long as you aren’t breaking laws or hurting anyone (including yourself) why should it matter anyways. I came out as gay at thirteen just to hide the reality of being transgender from my family. I was not even attracted to men I just faked it really well just as I did pretending to be a cisgendered male. Years later once I came out as trans i was told that if i wore gender affirmative clothing to a family dinner i would not be allowed to eat because it was disgraceful. To very abruptly tell the hostess off I wore the hottest dress I owned and painted just my middle fingers with nail polish. Out of pure jealousy of my figure she proceeded to tell me how I needed to lose weight and did not speak with me the entire event. People ask me why I disowned my family for my own health and that’s just the tip of the iceberg. Having to fit into their picket fence expectations never worked so I stopped.
If you have to move out of your province or state to get as far from family as possible to find yourself and your happiness, do it. I did it for a year and despite being the hardest year of my life it was one of the most rewarding years of my life. Wait until you can afford to do it, but it is fairly rewarding if I have to say so myself. If you have to cut out all your friends and acquaintances to start being yourself, do that to. It will be lonely too at first, but you’ll gave room for those that fully love and support you in your journey to authenticity.
Rest, Down time, Chillaxing, whatever you would like to call it. Everyone required to recover from any illness or medical diagnosis needs it. Despite being what most doctors have referred to as “medically interesting” since I was three years old (almost 2 decades ago) I have still not mastered downtime. I like to treat my paralysis recovery like a new sport i can train in. Yes, this may not be the brightest of ideas ex: the vomiting mentioned in my last post. If burnout was a place I would be the mayor or ruler. If I was paid based on the intensity of my recovery burnout I would have enough money to never worry about anything ever again. I am so incredibly horrible at downtime that my friends have begun to intervene.
After I started to bounce back from my day of sickness mentioned in my last post the girls got me out of my house for twenty-six hours of relaxing girl time and some good food. It is so easy to be constantly burnt out because I train my body like paralysis recovery is the new hot sport. If you aren’t sweating, bleeding, or in tears you are not trying hard enough. probably not my most brilliant tactic, but it is how i got this far in my recovery so why stop now. I will admit that taking two days off of my normal routine and just chilling was extremely difficult, but I felt so much better afterwards. Please be kind to your body and be less of a try-hard than I.I have lost track of the amount of recovery injuries I have had because I work my body to the point of complete exhaustion.
Transitioning and recovery have been a beautiful combination though. Since getting my hormone levels right, or as close to right as they have ever been I no longer lay in bed for hours just too depressed to function. I have gone back to being that happy annoying person that wakes up without an alarm with a smile on their face at five in the morning. This also means that I have been able to push my recovery harder than every because I am not distracted by disturbingly dark thoughts all day. when your mental health improves it makes it so much easier to improve your physical health and working on either one benefits the other, which is pretty handy. The combination of my mental and physical health lately have left me using almost solely artistic endeavors to retrain the left side of my body and make up for lost time.
I am going to end this bluntly: Don’t be a dick listen to your body and your limits so that you can heal.
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.