How do you think you would feel if one day everything you did in regards to the sensation of touch felt different and your fingertips were hypersensitive? This is what I got to experience as I realized that for over five years I had modified sensation in the left side of my body. When I was paralyzed doctors tested my sensation and without further discussion thought I had full sensation because i could sense the cold, pointed tipped metal object that they touched against my skin.
Up until Luke warm water ran across my hands followed by excruciating pain I had not realized that the left side of my body had minimized sensation. When I started to regain sensation in my healing side everything was painful for about a week, whenever I managed to get a water temperature correct to not experience any pain either way I had to stop and mindfully observe how different it felt to have the bead of water run across my skin.
A wonderful part of regaining sensation is feeling the pain from my tattoo sittings. Honestly feeling that pain on the most sensitive spots to tattoo is now becoming intense enough to distract from my day to day body pain for that day and for a couple days after the crash from the adrenaline high. Hiding the stretch Mark’s from my paralysis and not seeing the constant visible reminders of that time period has also been a huge relief of my tattoos.
Regaining sensation has resulted in feeling it when I do not clear a doorway with my arm or shoulder from the slind spots though. It might be similar to that scene in my novel that I walked into a cement pillar at work, but with more profanity Haha. The most comical point of realizing I had less sensation than even I though was realizing that I hadn’t just been emotionally numb for years, I’ve been physically numb too.
What have you been doing to heal lately?
In the aspects of my continued recovery the thousands of hours I have spent on the physical rehabilitation are beginning to pay off. Every few weeks I am seeing a noticeable difference in my functionality and my energy levels. Despite my pain levels being higher, twice as high as they normally are, I am left hopeful in what the next couple years for me. The end of this tunnel is definitely in sight even if it is still up to twenty-four months away.
My pain levels only spiked because the athletic level of determination and perseverance is functioning at the warp speed it used to. This means that for each activity and retraining exercise I am putting in maximum effort for maximum result because I am sick of having a physical impairment. I will admit that I have been burning out in shorter time-frames because I refuse to give up, but all of this has left me feeling entirely optimistic about everything in life. I have even had to take some time recently to figure out what my life and career goals may be once I have reached the point where I can move onto bigger and better things.
For the first time in years o not require thirty ounces of coffee just to barely get through the morning. Yes I have had the energy to double my daily physio routine and honestly I would continue, but after the second round is where I start to lose mobility and dexterity. I know that if I continue at this rate over the next year or so that I will be able to go and pursue any of my hearts desires. It is medically pretty rare that anyone with a similar diagnoses gets as far as I have yet alone still has the drive or desire to continue to push forward after five years
What have you done recently that you are proud of?
Every single one of us, no matter the amount of external sunshine has a darker less sparkly side of themselves. The one that keeps you lying in bed morning after morning because you just do not contain the desire to start your day or any day. I’ve been stuck in a rut for a few weeks for sure now. I should be happy with how feminine I have become with the help of fourteen months of hormone replacement therapy, but instead I am left here on edge feeling unsafe due to my appearance. The last time I looked like this I unfortunately experienced some trauma and just having a very similar figure to that time period leaves me in tears.
How I cope with everything is by staying fit and getting those endorphins flowing so that even if I don’t feel the greatest in my body I’m still in a relatively decent mood and day. I called this post dancing with my demons because when I feel anything negative I dance it out. I just sync up some music and I dance until I feel better whether that takes half an hour or four hours does not matter.
I know I’ve been absent lately, but I’m hoping to get everything from my recovery to my pain back on track. Finally taking the advice I’d give anyone else in my position and take each day as it comes with minimal expectations. Recently I even invested in a binder for days where my girly figure makes me feel uneasy and it has been helping that aspect of my dysphoria and mental health in a big way. Just one of the Joy’s of being in the non binary section of the gender spectrum.
What’s one thing you’ve done recently to make yourself feel better?
This one was another reader suggested topic so here’s my attempt. With all the ups and downs of the roller coaster we call life it can be quite a task to learn to see things in a positive light and not kick ourselves when we are down. In both my transition and my continuous physical rehabilitation finding the positive aspects and internal happiness has been a skill I had to learn to not throw in the towel every other day.
One of the most helpful tricks I rewired my brain to do subconsciously and modify my own thoughts was to acknowledge the bad, but only give attention and focus to all the positive aspects of any scenario. Life truly is about finding the balance so instead of wallowing in the bad parts I figured out how to enjoy even the worst of my dysphoria days and the static days in recovery.
Some days I have limited to no functional mobility in my hand to this day, especially when I am stressed or sleep deprived. Instead of focusing on the anger I sometimes feel towards my paralysis I thank my body for not giving me any say and forcing me to take a rest day that I never take unless I cannot function. A day off here and there shouldn’t be an issue unless you’re a workaholic towards your personal goals like myself.
When my dysphoria get’s so bad that I wish I could rip my own skin off I find one part of my body that I at least like and find a clothing article that emphasizes it so that even my own attention is drawn to it all day. For me this is usually my bust despite all the pain it causes me. Sometimes distract-o-boob is all I need to get through an escalated dysphoric day.
I promise that if you can find one positive in every day and hold onto it that you will make it no matter the struggle. If you are struggling also do not forget to reach out to a friend or connect with your mental health professional and learn some healthy ways to cope.
Love and light,
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.
Most people do not come equipped with the singular focus or dive to Male their recovery from anything their top priority. One of the best things for my physical recovery was the singular focus that comes with being atypical. Since the day I decided I would beat this it has been my top priority and a bit of an obsession. I was one of the lucky few who knew at the time of my paralysis because I was a martial artist and a pole fitness practitioner. Even almost five years later my recovery is my top priority and nothing will get in my way until I am 100% recovered no matter how long it takes me.
Making ones health a top priority is isolating, can be lonely, and at times will make you feel like you are going to lose your mind. Even within friendships the time spent together had to be mutually beneficial otherwise it was another thing that added to the long list of things I felt obligated it do and eventually died off. Anyone who consistently took time away from my week got cut off. For example I had an “acquaintance” that thought they we fiving me something to do when they would pick me up just so they had a buddy while running their errands all day once a week. I’m sorry but if I want to accomplish nothing and just be there to fill a space I would rather it was my space on the couch doing something to heal my body like occupational therapy exercises.
I’ve never met anyone else that sits down with a pot of coffee every day and assesses what tweaks can be made in every aspect of their physical rehabilitation to improve the balance to get where they need sooner. Martial arts may have never been my thing despite the nine years I trained, but it did teach me that every day you can make something better if you are willing to put in the time and effort required.
My paralysis set me back in every aspect of my life but no matter the loss of potential earnings or being several years behind where I want to be. Friendships lost, opportunities not taken, I still see my paralysis as one of the best things that has ever happened to me because it taught me that I can make it on my own no matter the odds. When I heal and am ready to pursue all the things I want accomplished it’ll be a hell of a lot easier because I know how to not give up.
I have learned a lot even since I published my book, what do you guys want to know more about?
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.