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.
Most people do not come equipped with the singular focus or dive to Male their recovery from anything their top priority. One of the best things for my physical recovery was the singular focus that comes with being atypical. Since the day I decided I would beat this it has been my top priority and a bit of an obsession. I was one of the lucky few who knew at the time of my paralysis because I was a martial artist and a pole fitness practitioner. Even almost five years later my recovery is my top priority and nothing will get in my way until I am 100% recovered no matter how long it takes me.
Making ones health a top priority is isolating, can be lonely, and at times will make you feel like you are going to lose your mind. Even within friendships the time spent together had to be mutually beneficial otherwise it was another thing that added to the long list of things I felt obligated it do and eventually died off. Anyone who consistently took time away from my week got cut off. For example I had an “acquaintance” that thought they we fiving me something to do when they would pick me up just so they had a buddy while running their errands all day once a week. I’m sorry but if I want to accomplish nothing and just be there to fill a space I would rather it was my space on the couch doing something to heal my body like occupational therapy exercises.
I’ve never met anyone else that sits down with a pot of coffee every day and assesses what tweaks can be made in every aspect of their physical rehabilitation to improve the balance to get where they need sooner. Martial arts may have never been my thing despite the nine years I trained, but it did teach me that every day you can make something better if you are willing to put in the time and effort required.
My paralysis set me back in every aspect of my life but no matter the loss of potential earnings or being several years behind where I want to be. Friendships lost, opportunities not taken, I still see my paralysis as one of the best things that has ever happened to me because it taught me that I can make it on my own no matter the odds. When I heal and am ready to pursue all the things I want accomplished it’ll be a hell of a lot easier because I know how to not give up.
I have learned a lot even since I published my book, what do you guys want to know more about?
From a book signing to my transition to finally beginning to tackle the plateau in my recovery that hit me at the end of last year and a six month pain spike where I accomplished nothing. This year has been anything but ordinary. This year was one of those make it or break it years that has prepared me fully for whatever comes next and for all I am hoping to accomplish over the next 12 months.
I’m an author that learned that I truly hate running my own reading and signings and if I ever finish my next manuscript I will pay someone to do the talking and just sit there and sign books. I read that book so many times in editing that no I don’t want to walk the length of a room and read it to you aloud haha.
My transition has been an emotional rollercoaster, no joke I cry every damn day and I’ve learned to accept that happy me is an outwardly emotional person and that has taken quite the adjustment. Almost 13 months into my medical transition now I have almost found my ideal balance between Male and female to match my nonbinary identity too. I know that the changes will continue for years to come but I could be finished my medical transition at some point this year with any luck.
In regards of my recovery I was lucky enough to start healing again and further regain some mobility. I hope that within a couple more years I will reach that full recovery and have equal strength and ranges of movement in both halfs of my body. More than anything else my paralysis taught me the patience I needed to slowly work towards a goal without seeing much progress and not lose my mind. In less words it fully readied me to transition even though the timelines now overlap.
The last 3 months since I got my worst recent pain spike controlled have been so good to me. From closer friendships to bigger goals and realistic timelines I got pretty lucky this year even counting the six months I was the living dead on a couch. I hope that all of you are equally as excited about what this year may bring.
I would like to start off by saying I’m sorry that I have been AWOL for a while and I miss interacting with you guys. Up until the holidays i have been trying to mentally prepare to see my family this holiday season and it did not work. I only know a couple of people who normally do not struggle with the holiday’s and these people were on the same ship sailing to the same unknown destination.
As rough as these last weeks may have been I can say that some awesome things happened too. For example I got the chill with a bunch of friends instead of seeing my disowned family on the twenty-fifth. Thanks to struggling with my upcoming trauma dates I have been tackling my mind with obsessive amounts if exercise and have made some progress with my micro movements. Seeing the good in the bad has been one of those beautiful skills I had to learn since hemiplegia
Spending the holidays with a bunch of queer friends where nobody’s gender identity was an issue or hot topic was nice. It may have even been the first time I ever got those warm fuzzy holiday feelings that I have heard people rave about my entire life: Pizza, board games, friends, laughter. The kind of event that makes me not want to spend another holiday with someone that shares a gene pool or bloodline with me ever again.
I need to slow down again I have been pushing myself too far for too long and it is probably why my pain is high resulting in varying levels of sickness. I might even make it a goal for next year: be less sick haha. I hope you’re all doing well and are having love filled holidays.