We all get lost from time to time, whether you just lose parts of yourself or you have lost all of yourself that you have previously known. Personally I lost a lot of myself for a few years when I moved home to recover and transition. It has taken me upwards of three years to get back to the central parts of my being, most of which was taken back throughout my transition. Living an inauthentic life took me in various directions none of ,which were bringing me closer to where or who I needed to be, thus I was lost.
With my GRS coming up in a few weeks I have been stressed, while trying to preoccupy my mind. This has lead me down each adventure and memory of my transition and left me grateful that I’ve made it this far since my paralysis. On the other hand it has me trying to line up my next adventure as well as post secondary again. Everyone that knows me knows I like to keep myself busy, so you probably know that waiting on this operation and the college admissions waiting process has me antsy.
One of the many perks of my fair ride of a life is that even in young adulthood I have the physical and emotional coping skills to tie myself over until after my surgery. I’ve been spending a tonne of time both making music and getting back into a calisthenic workout routine so that I’m not just getting in shape, but being creative as well. I may always have a remaining physical impairment, but it taught my humility, self love, and true perseverance so I will continue to just embrace my paralysis as one of the best things that ever happened to me.
Moving back home to transition has been rocky at the best of times, but that was partially my own fault for leaving a majority of my friends and socialites about 10 hours away. Moving back was not a brilliant idea, but it certainly reminded me of the resilience still left in me to not give up on my own goals no matter how hard it gets, or how rltemoted I was to walk away from everything. I’m even trying to plan my move to somewhere relatively far away within a few months after my operation to commence a new chapter in this odd little life of mine in a brand new place.
How’s everybody doing?
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?
Everyone seems to think that with enough hard work and enough time that one day I will miraculously wake up fully recovered. the reality is that I will have to maintain my dexterity, strength and range of motion for the rest of my alive days on this Earth, unless I want to backslide and revert the progress I have made over almost sixty-three months. Each and every time I have a bad day physically is a great reminder that over any other thing my health comes first. yes Some days the pain levels are uncontrollable and I would love to just say,” f#ck it”, but unfortunately I am a highly driven person and I have goals to attain, and missed opportunities to catch up on.
No My physical and visual impairments were never penciled into my dream life, but in spite of the terrible days the few good ones make every second of the struggle worth my time. It has taken me years to come to this conclusion, but all it take for even the worst of days to become good ones is a single movement or motion done correctly with the appropriate muscles firing on command. during the plateaus and the pain spikes these over joyous moments are few and and far between, but somehow they are the times that keep me dedicated to my own recovery.
Desired outcomes are not always what you get when it comes to neuroplacticity. Only now am I beginning to rewire the mis-wired neuropathways in the left side of my body. It is actually quite intriguing to be able to get a muscle to perform the desired movement with help of neuro-muscular electrical stimulation. from the muscles in my ankle that were performing opposite functions to the muscles in my arm and wrist that didn’t fire at all, with this body I occupy each and everyday is a whole new adventure.
Sorry I have not been keeping up withe the regular updates, I have been struggling to come up with topics for this blog lately… feel free to drop any topic suggestions down below or shoot me a DM on Instagram @mx.addyblake
Yes I still live in chronic pain, yes I still struggle to not slip back into my eating disorder, yes I’m still recovering from paralysis; but I am so grateful to be where I am. One can choose to see all the things that are wrong in your life or you can choose to make a list of all the good things no matter how small and be blissfully happy with what you have. No, I’m not saying you should ignore the bad, just do not make it your focus if you cannot do anything to change/fix it.
I could lay in bed at night and he angry that because of my visual field loss nothing ever looks the same from day to day, week to week. Instead I have always found a joy in seeing everything a little differently each time depending on lighting, time of day, etc.. all I have to do to not see something or someone I do not wish to encounter is turn my head just ten degrees. That my friends is a gift and saves me from being deadnamed and misgendered all the time in public. sometimes you just have to learn to accept things as they are and find the angle that makes the predicament a lot or at least a little easier to swallow.
I could even wake up every day and decide that I hate being trans and in turn hate myself. This is so common in the trans community and leads to a lit of internalized transphobia. Instead I cherish that I live in a day and age where to carrying degrees depending on location I can choose to experience my non-binary genderfucked self however I feel like it from day to day. Everything in your life no matter the situation can be adjusted with your mindset alone.
One thing that helped me train my brain to see things in a more positive light is to fund 3 to 5 things that I’m thankful for each day when I wake up before I have to roll out of bed. Sometimes if I’m running late like on my way to my surgical consult this past week that moment to count off my list was on a bus and the dorky smile I made counting it off in my head made a few others smile too.
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?
I’ve been doing this for what feels like a long time now and no matter how much I overdo it or if I have a balance between my recovery and my leisure I hit a wall and sleep for a day or two every 3 to 6 months. This past weekend I hit that wall and despite getting my normal amount of sleep, as soon as I completed my daily routine I curled up and fell asleep for the rest of the day. Normally I wake up a bit angry for wasting a day, but this time I felt at least partially rejuvenated and it was glorious. Continue reading
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.