Disclaimer; this is entirely my own theory to which I do not have the resources to prove incorrect or correct. I do not think there’s science to back it, but I’ve always had a theory in reference to my paralysis that it was a physical manifestation of all of the emotional turmoil that was compartmentalized into different areas of my body as physical ailment. I say this because as I have dealt with a lot of “my shit” and in times where I have noticed an improvement in my mental health I have also noticed coinciding and parallel improvement in my recovery rate or rate of improvement in a muscle movement or strength.
I know for fact that I hold a lot of tension. While some have “no chill”, I have ” no relaxation”. I have been previously described as one of the most tense people some know. Everyone is always trying to get me to relax. This is why I have a pick that I fidget with whenever I leave my home these days. I find it significantly more discreet to flip a pick between just three fingers as if I were fiddling with a pen. There are however a few people in ny life that just being around them can bring me to a calm, zen place mentally where I feel most hippie-esque. It’s not just the zen in those scenarios it’s knowing that with those people I can let my guard down and be honest to a fault without social consequence. The ones who check on me when I’m quiet because they suspect that I’m not sleeping or my pain levels are higher than I’m openly admitting to.
Being chronically ill I fully acknowledge that I count my energy in spoons, sometimes I have five for the day and others it’s five for the week. I have no desire to be around those that suck the life out of me like a positive vibe leech. I prefer to only spend my free time with people that recharge my batteries with laughter, connection, and good conversation.a few acquaintances recently claimed that they never laugh as hard as they do with me with other people. I guess I’m just willing to try and find that heart chord in conversation that will make someone laugh until they cry because I am familiar with what used to be an internal abyss of darkness.
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,
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?
I sit here a little overwhelmed at everything that is going on right now, but realistically I am coping pretty well. Both physical and emotional pain have been high for a couple weeks, and I’m doing what I can to deal and push through it. With my pain levels as high as they have been my progress has slowed, and I’m trying to accept this as just a step in the process.
Let’s start with the emotional pain: this week my brain acknowledged that a handful of trauma anniversaries are coming up all within the next two months and I’ve been using every coping mechanism I have. I’m lucky enough to know myself and exactly what I need in these times because, December and January have been tough ones for me for years now. My most used tools this week were: square breathing, meditation, physical activity, and getting musically creative. If you are struggling this season do not forget to reach out to someone you trust and talk about it.
Between a spike in my chronic migraines and recovery pains I have gone back to having more rest days than productive ones and being the perfectionist I am is quite frustrating. So much of this time is spent pent up on the couch staying as still as possible so I don’t make the nausea worse. Probably why I used to play three instruments that took little to no torso movement before paralysis haha. As the body heals and muscles grow so does the pain. It feels like every other day the pain is a new game. I have to wake up and take each day as it comes, no plan, only a general direction and the internal drive to continue to heal.
I am hoping that next week is at least physically easier so I can get some of my personal goals back on track. Whatever happens happens and will continued to be honoured as just part of the journey. How are all of you doing this week?
Everyone will tell you that recovery eventually gets easier. I am well past my half way mark and I have to say I cannot agree. There’s nothing worse than being so close to being able to do all the things you desire and yet all of them are out of reach still. So I guess all of recovery is difficult for different reasons. At the beginning it was finding the drive to keep going every day, in the middle it was the struggle of lost time because every day looked almost exactly the same and closer to the end it’s trying to not best yourself up for being so close, but so far away.
At the beginning one just goes on because they are told to, despite everyone and I mean everyone saying you’ll never get better especially after every treatment to try to correct it fails. You eventually begin to lose hope and direction and you resort to living each day just to get through the day in front of you. One day none of the tips or tricks you were given to help you work at all and when you find ways to curb it is where the next stage begins. The beginning was the worst for me because it also paired with the severe post op depression that comes with neurosurgery. I had to convince my brain every day that there was something to fight for even though most of the time I did not believe it myself.
The middle of my recovery was a strange stage where I became obsessed with finding the best ways to better my physical health. Every free waking moment spent running every possibility through ones mind of the exercises, stretches and activities one can try to get better. This was a stage where most things only worked in bouts, there was a fair bit of crossed pathways so it was a stage summed up by “One step forward and two steps back”. This felt like a plateau without further analysis, but really my body was trying to sort out its own problems, which on the outside appeared with what looked like severe muscle confusion. Then comes the final stage and final stage take: 2
In the second to last stage you are conquering recovery, have figured out how to thrive through both your good and bad days and are just itching to get back to a normal life without putting your health on hold again. This is where I am at, I can see the stars, yet I still cannot smell the roses. Every time you think you’re almost at the finish line it turns out it was a mirage and you’re going to have to fight like hell to not give up every day. I know that every other day I get a little closer, but still just wish I could pick up and start over where nobody knows my name. I’ve mastered my habits so on these days I try to just rest and maybe take a nap if I’m super trained.
I hope to get to the final, final stage within the next couple of years or so, so that I’ll be the fun life living person I used to be once again. Even if the rest of my life involves a couple of hours of physical therapy a day that would be a lot more manageable than eight to ten-hour days.
What have the stages of your recovery been, feel free to share them with me.