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It requires years of self analysis and knowing my own physical limits to even begin to gauge the amount of energy (spoons) “re spoon theory” to try and gauge how much I can do in a day. Some days I have the spoons to complete an entire weeks to do list in half the day and others it takes me all day to complete a single thing because my pain levels are just too high. My transition and getting my hormone levels corrected was an act of creating more physical energy in my body and during good months even having more good days than bad.
Prime example: I recently had a 6 day migraine that left me with zero daily spoons so I mostly just ate when I had to, bathed, and rested. I can tolerate the pain, but the light sensitivity and nausea really knock me down a lot. I’m still trying to bounce back from it, but I’m regaining energy daily thanks to proper exercise and nutrition. The week prior to this pdin spike I had had more energy than I had in quite some time and was getting lots done so I anticipated being knocked on my ass, although I did not anticipate it being so bad.
With a little bit of caffeine I can push through most levels of pain expect my max pain tolerance, which in turn makes it that much harder to notice thet I’m pouring from an empty cup that lacks physical energy. At least I’ve gotten better at taking a week off when I need to. I may be stubborn and willing to do what I have to to get things done, but I understand that in being an empowered, disabled, two spirit woman I need time to rest and recharge, and I will enjoy every second of it.
What do you do when you need to rest?
It’s been a hot minute since I was left hemiplegic and my life changed forever. I sit here staring out the window on a overcast winter day with tears rolling down my face. My body trembles with the acknowledgement of all that has changed and what has maintained its original form. I wish I could say that I am still that person, but like a healing plant I’ve experienced some photosynthesis and began to blossom into an entirely new existence.
From wheelchair to Walker,
from cane to cane,
From leg brace to ankle brace,
I never left a trace,
The spirit of him still exists inside me,
But he rarely shows his face,
From from paralysis recovery to gender transition,
I never thought I’d be in this position,
I continue to heal to no appeal,
I wish someway we could just get real,
The pain lives on with me still in that feel,
Somehow I sit here it’s beyond surreal,
Behind this smile is the tears of my past,
The rivers from my eyes grew so vast,
Finding my culture hungry like a vulture,
From parallel bars to winning interpersonal wars,
I’ve always been up for the battle I’m getting back in the Saddle.
Love and light,
As autumn begins to transform into winter I find myself pondering the changes for both better and worse in all aspects of my life. From the analysis of friendships to the assessment of paralysis recovery wins and losses this year has been a bit of a whirlwind. I keep hoping that if I pause long enough to catch up my head will stop spinning. In the process of healing myself both physically and emotionally I have come to terms with the reality that I am not the person I was a year ago or even just six months ago.
Friendships had always been weird for me I grew up as a sick kid that spent a fair amount of time in the school infirmary. It was not until I was a sick adult that I made friendships that lasted throughout the ebb and flow of years of growth. By the time I was reaching adult hood I was over two years into my paralysis recovery and grieving the loss of my favorite human and best childhood friend. Albeit painful, I truly believe that it helped me gain the authentic social circle I have cheering me on through the good, bad, and ugly of this entire process. Sure I’ve lost many friends and associates along the way because they needed more attention than I could give, but I just hope they found the people they needed in their own lives.
Having true friends to share those things with has made my recovery significantly easier to process knowing that I have never once been alone in it. That being said, this year of my recovery topped the charts for pain, which I did not think was possible after last year. The bad days were equal in weight to the great ones though. Despite the pain I had a bunch of little things micro-movements if you will over the last six months since my grs and being off testosterone blocker. This year I have begun to regain my opposable thumb and it may not sound like much, but I am a solid ten percent better at picking objects up and holding my guitars. As well as improved ankle strength thanks to a new anterior foot orthotic so I stumbled less everywhere I went.
I know I have been beyond absent this year but I hope that everyone’s year has had equal parts good to the bad.
Whether you call it “the daily grind” or the “rat race” every one of us reaches a point where we have to take a step back and assess how to make our daily lives more sustainable so we spend less time running on nothing.
I will admit even coming up on six years in hemiplegia recovery and I have yet to find the perfect balance between physical output and rest. In fact I am skilled in overdoing it to the point where I am in too much pain to move and spend a few days trying to recoup.
More recently I have been working towards a better balance so that I do not require as much rest, but I am not making headway on the solution.
One thing that has helped me better assess the spoons I have is just breathing. Taking just a couple of minutes to pause, be present in my mind, body and environment. Then decide whether to continue on with physio/occupational therapies or to focus on something else and let my body rest.
Some weeks I still ignore my body because I assume that I can keep pushing a little bit more until I physically cannot move my arm or leg without wincing in pain and thus becoming couch bound.
I have been fairly strict with my recovery schedule this year. Planning my entire week around appointments, recovery, self care, and social outings, but lately I misjudge the amount of energy I have and end up cancelling all my social plans. This is a problem of having a goal in mind and being too driven for my own good.
Just like everyone else I’m very goal oriented and I would like to reach said goals in the shortest amount of time possible without injury. This is something I have to fight the urges to constantly be working towards my goals. Reminding myself that in order to heal rest is required, not earned as a reward.
For me the renewal in my chaos is the hour a day I put aside to do something unrelated to my recovery that reminds me of all the things I am grateful for in life. Usually this involves a creative outlet of various mediums, but sometimes it is spent just meditating.
What do you do to feel renewal in your life?
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.
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.