Social Distancing

Throughout this global outbreak we’re all supposed to be self isolating as much as possible to prevent and slow the spread. If you are chronically pained like me you may have been practicing social distancing or isolation for years already and enjoying a bit of a break from your social calendar to focus on your health (mental/physical/or spiritual). On the other hand I know a bunch of people that are experiencing cabin fever while cooped up in their homes. You’ll either enjoy the break or you’ll hate being told what to do and having to be safer from illness in your home.

If you’re bored out of your mind at home I would suggest reading books or participating in your hobbies. This break has been less favorable for my creativity due to my roommates being home, but has been great for reading and maintaining my physio therapy and workout routines. I’ve also been adapting to phoning the friends I would regularly see to both catch up and check in on them instead of just sending them a text. I’m finding it better to hear someones actual voice and laugh than to just read a text in their voice. I have been playing guitar and songwriting here and there but in the last three weeks I have not been working on an projects seriously or consistently.

This too shall pass, in the grand scheme of things we just have to make the most of it and access what worked for us and pick and choose what we want to return to when we have the opportunity to. I truly hope that social distancing is done before I move so that I can go back to school in the fall, but just like everyone else I’m just taking it all one day at a time.

What are you doing to make social distancing easier for you?

Playing the sounds of my Soul

Music has always been a large part of my life even when I was just a kid. I started to learn the acoustic guitar at six years of age, around ten I began to learn the organ, in high school band it was the alto saxophone. So it was to nobody’s surprise that I took the opportunity to relearn guitar as music therapy to rewire my hand after I experienced left side hemiplegia.

Now making music is my biggest cause of sukha. This is why I do my best to sit down every day, find the key that fits my mood and sing out whatever is stuck on my mind. It is my most common source of peace and emotional release. I used to bottle everything up until I was in tears, so for me music has been a way where I connect to my inner self and work through whatever is going on in my mind. When people think self care, they often just think its pampering yourself, but in reality it’s about taking care of yourself so that you feel better. Whether I laugh or cry my guitars and daily play are a part of my self care routine that keep me the most level.

When it comes to genuine songwriting I try to take a more deep and meaningful approach to lyrics and piece together the TAB after I’ve got the lyrics roughly drafted. For the music I’ve been writing for the last year and a half each song was either about a love or a trauma. For me it has been telling the not so kind truths that were all cut from my novel in a way where despite some of them not being the most positive topics, they still remain heartfelt songs.

We all have that one thing that brings us peace and I’m truly grateful mine is not fishing.

What brings you peace?

Physical healing and emotional Regeneration

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.

More recently, last year I got back into counseling after my bottom surgery because I needed to process some old trauma aloud and I was finally ready to say my piece to find my peace. After each session I noticed my body starting to hold less pain and less tension as I was healing this seventeen year old soul wound. It continued to improve and eventually I started to feel a lot better on my good days and even the days where I cannot get out of bed due to physical pain are not as bad now that i survived my own mental prison. Even if it was the movement of a single digit of a finger or toe I notice a functional difference each time my emotional space improves.

That delicate balance between using and saving spoons

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?

Sometimes Fidgeting Can Save a Social Event

I’ll be real with you, like many others I experience some level of social anxiety and I know how loud social settings can bring up a lit for me so I fidget. A couple months ago i started carrying a pick with me at all times just for moments such as these.

Today at brunch it was the scent of a bath balm that reminded me of a recently passed ex lover. I wafted the scent for a few moments before tears welled in my eyes of that past spring lust of that sweet romantic fling. Before I began to weep I managed to inch the guitar pick out if my pocket and into my healing hand to run it through the fingers of my opposite hand. In this moment I felt a bit of comfort flow through my body at such a bittersweet time.

The scent of the bath balm transcended upon me so heavily that I could almost taste his lips and feel his touch again. Momentarily longing for that marvelous spring lust of what felt like a lifetime ago. I remember the sensation of his soft gentle hands against my curves and my hips. A steaming cup of joe in my hand just sipping at past bliss. It was many moons ago but it has yet to be forgotten.

Being able to fidget with my pick saved me from a heartfelt cry with a large group of friends, the sorrow still somber coming and going as it tends. I wear that fruitful lust in my heart for the part it has taken. The past brought me here today with the future for the making.

check out my personal underdog story here

It’s Been almost 6 years

complete reference guide to the first 36 months in recovery

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,

Addison Blake

Just Like Seasons People Change

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.

Finding Renewal Within the Chaos

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?

That Moment Where Everything Changes For The Better

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.

The Calm in The Storm of Grief

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.