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.
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 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.
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.
Few things are as empowering and equally as lonely as making the choice to transition medically. From the isolation to the generalized misunderstanding outside the trans community the entire process can be pretty rough. Most of us have to make concessions to be able to transition medically, for reasons of social wellbeing, financial wellbeing, and or overall health. My move back to BC was both for my recovery and my transition, but moving back here also meant being back in my hometown with all the acquaintances and friends I never had here. Recently I started the process of my legal name change to actually be Addison Blake on paper and have never felt more comfortable in my own skin.
Between my weekly/monthly physical improvements and knowing that my medical transition is done and I’m just waiting for surgery, I no longer feel as trapped here as I used to. After I get my grs (hopefully this year) I can go live wherever I want and even go back to school if I want to. Now as I continue to heal it has started to become easier to get social and make new friends, which would have been much more appreciated through the beginning of my transition when it would have helped to have a local friend by my side on the journey. It has only been a few months since I started to feel more comfortable in my gender and less concerned about how I may be perceived publicly in a place that is not exactly the safest for any queer minority.
The stigma behind the ridiculous concept of ‘passing’ is real. I am lucky in that I confidently try to not look cisgender in my daily life as a non binary individual. The other day I even got misgendered dropping off signed copies of my novel at a local joint and instead of being offended I just quietly chuckled to myself, which seemed to embarrass the person. The best part of my name change is that for me it’s a fresh start of who I have always seen myself as internally. instead of having an overtly masculine name my first and middle names are fully gender neutral, which is perfect for me because I am fairly androgynous. There are tonnes of people who will tell you that they hate being trans, but I am not one of them. I am glad i live in a day and age in a country where i have the ability to be who I am, whatever that may be. Even in spite of how lonely parts of my journey have been I am grateful to be on this journey being visible for the following generations to witness and see that authenticity is a possibility.
What is something you’ve done to live your fierce authenticity?
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?