As a common saying goes, “everything can change in an instant”. Personally I have had a few of those circumstances arise for me personally such as: paralysis and waking up after my GRS feeling like my meat suite was completely my own for the first time. It seems like no matter your stage in life or area of expertise we are all just waiting to achieve that next goal in Hope’s that it causes a shift in our lives for the better. We should be more focused on just being happy in the present despite the conditions.
I will always honor the years I have spent rehabbing my body and the daily activity required to maintain my health for the rest of my life as one of the best life changing moments because I learned to see the world in a whole new light. Among many other things I learned, patience, self love and gratitude for the smallest of wins. If I’m still alive when middle aged I think om going to be one of those people that says things such as,” every day above ground is a good day.” People think it’s intense that I see that event as a positive thing, but I actively made the decision to have my right temporal lobe craniotomy revision, I even signed the surgical consent myself because I was old enough.
Honestly in the weeks leading up to my recent operation I pretty much fell off the grid. Going into surgery I was so stressed my anesthesiologist was actually cracking jokes with me to try and get me to relax before she gave me the epidural, of course I panicked my last operation left me half paralyzed. There was literally no better feeling than “waking up” post OP and realizing that the procedure had gone just as planned and despite still being frozen from the waist down , which was kind of strange I was left with tears of joy rolling down each cheek with a grin from ear to ear. I’m not going to lie, I definitely had my doubts if this surgery would complete my medical transition or not, but to my surprise it did. I might need to learn to just have a little more faith in things turning out well. It turns out surgical recovery is pretty relaxed. when it’s an uncomplicated minor operation. I have been trying to just take it easy so I heal, but those who have followed me over the years will know that I’m bad at taking it easy.
Over the last almost five years I have adjusted to the waves of my grief fairly well, yet both at the beginning of the year and around the anniversary of her passing I go numb for up to a couple weeks just stuck in the sadness of missing her and not being able to share all that has happened since that day with her. Luckily I know that this too will pass and whether it’s a couple days or a couple weeks I will bounce back and feel as I normally do again. This was not always the case, I was number for about a year and a half after her passing where all I felt was a numbness inside. No passion, or joy, or even hope just numbness.
This year it has hit me a little differently, but I think that is due to my upcoming surgery and actually having some things lined up for life once I’m post OP. It may have taken me a few years, but it feels like I am finally moving forward with my grief instead if living entrapped by it. Yes I still miss her, and I still cry, but that will never go away, it just happens significantly less frequently now. Grieving the loss of one of my childhood best friends at only seventeen years old, certainly helped when it came time to acknowledge and accept the grief that often occurs through points of a persons medical transition.
I am fortunate that my grief comes in waves that hit at the same times of tear annually so all I have to do is check the date when I feel that nothingness and acknowledge the source before letting the feeling pass after I’m done feeling it. For example today it hit me first thing in the morning so I decided to treat myself to enjoying my caffeine in my warm sunny backyard while music played in the background. This resulted in allowing myself to unpack what I felt and having the opportunity to get on with my day. Yes I enjoyed all three cups of coffee while a constant bead of tears streamed down both checks, but there’s nothing wrong with having a good cry from time to time as long as the feeling doesn’t control you.
I hope you are all well, do not hesitate to reach out to your support network when you need to talk.
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 lot 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.