3/1/26 – Movement
What’s crazy, is Callie asked me the question during dinner, “I wonder why some people’s nerves don’t heal, or heal fully?” And it got me thinking, because I’m feeling such a significant increase every day in sensation! I said, “Movement”. Continued Effort. I think it’s all the information and stimulus I’ve been continually giving my legs, and it’s been helping them continue to progress! It was interesting because we got started talking about Tannins in fluids and plants, and then it morphed into us talking about nerves healing. I’m just very genuinely proud of my body for continuing progress every day!
The sensations this morning are off the charts! I really gotta go potty, so I better get up and resume these notes in a bit! My low abdomen last night was helping me hit the highest notes I’ve ever hit to date! And my sustain was improved so much! Not to mention my overall volume!? I was louder than ever as well! And I could feel it all coming from my low abdomen, “my loins!” If you will!
Kinda crazy! I did wake up and need a bunch of water, so I’m trying to always stay up on the hydration, but boy is it tough sometimes! I didn’t have creatine or electrolytes yesterday so maybe that was it?
Towards the end of the night last night I was feeling a massive amount of fullness in my legs! Very even across my left and right glute, and carried down my legs!
In the car driving home and both my legs were standing on the brake????? They’re trying!
3/2/26 – Finding Time in The Day
With another nights rest, I honestly am feeling a huge squeeze in my upper thighs right above the knees circumferentially?!? This is so interesting, the activation down here is wild! Very big!
My lower left abdomen is loosening, I can feel it! I know it’s been the subject of a lot of my attention, and I can feel it changing rapidly, that’s forsure!
Been thinking about needing to make more time for the KAFO’s, resting floor time, resting KAFO time… it’s so interesting to me because there really is only so much time in the day, I don’t always know how to optimize it?
I can feel this lower abdomen working hard, low back and glutes working hard, to be honest everything in my legs feels like it’s working hard! Trying to just get more time on my feet, balanced with work, life, projects, this is the hard part! The setup and tear down of it all seems to get me…. You know…. Last week Nina mentioned to me about getting up standing every hour…. I wonder what that would look like to do in the standing frame, before the end of the day? Get up in the standing frame for 5-15min, and then get back to it all? I do know that I always seem to “make it a big ordeal” in my head, but what if we tried that on the top of the hour? If everyone is expected to get up and move for a bit every hour, why not me?
If I try to work in these shorter bouts, maybe this will help keep my legs in a more easily and readily worked state, before a larger movement day like PT? Let’s try that today!
I need to try too, to see what it takes to put my KAFO’s on and off by myself, so maybe make a point to mention that too, to Ashley to get some practice with that as well!?
Small steps, small changes, consistency. I really think if I can work on those changes, I’m hoping some larger ones will come!
You’re always worried about “going pee” when you stand up, but do I really need to worry so much about that? You got up in the standing frame last night for 10-15min, and didn’t have an issue, why would that change during the day?! Let’s get to it and see how it goes!
7:45am – short stand 1
10:15 stand 2
So I got done with PT, and I go, “wait is the car still running? And there’s a low rumble going on in my legs…. It’s so wild?…
I like, feel my mind being held in such an odd state right now. It’s tired, hungry, and not a lot of gas. I’m down in prone to help my hip flexors, and it feels great to not have to sit. For once in the day.
3/3/26 – Mentor Dream
What did you want to be when you grew up? Because I had a dream with this young fella named “Michael” where I don’t know why I was there, but I ended up playing LEGO’s with this young fella, in the rather large mansion. He was a bit of a savant, a very smart young fella, who was maybe 12? Going into his senior year of high school. We ended up having a long chat about how high school was more than just learning, and how the social aspects, about learning how to talk to other people and socialize with girls (which I was never good at) was also a hugely important part of high school as well.
It was weird because I was in this mentor state, helping him learn and make decisions. It’s so odd, because as we grow in life, it seems like we just end up doing that as a natural progression.
So interesting too I don’t know what it is about our dreams that make em come and go. So wild.
My feet and legs right now are feeling wild! My low back and paraspinals are kicking in like crazy! Let’s make it a point today to try to get home at a decent hour and get up in your braces! Yesterday went really well, but it’s gonna be hard to make progress with 1 day of PT a week!
Rest day…..
3/4/26 – The Script / Set of Plans
It’s wild how much sleep I’ve needed to get last night and the night prior. My body sure is making changes! It’s wild too, I think I actually got some decent enough sleep? My left deltoid is being goofy, but my whole body right now is really feeling active! My entire posterior chain, my low back and glutes!
…..You know…. If there was a script, for how to do any and everything, like getting back walking, everyone would be doing it by now. I guess that’s the thing, for something that is truly, actually, difficult, there aren’t exact steps or rules you have to follow.
In the grand scheme of it all, what is actually, “hard”? Individual achievement, as opposed to group think, or incremental improvements, built off people from before us, is that really that “hard”? Or difficult? Having to deal with a body, that is unruly most of the time, and you have to excert and dedicate your full time to? Now, that is a whole ‘nother level. Hard to be able to let your mind do whatever it wants when it has to tend to the vessel that it’s occupying. When you’re unable to do seemingly so much but also doing so much at the same time, it’s truly a spin for the noggin!
Who knows. I guess it’s never easy any way you want to spin it. And then you have to imagine all the folk who have it even harder. Goodness.
What was incredible still amongst all this chaos and “Azerby” (made up word to describe the chaos), was the fact that my feet were pressing more significantly in the floor, in the chair, at dinner, to date. It was pretty astounding to feel how stable I was, I had to take a second look around and confirm that’s what was happening?!
My body is tired. My mind is not. Kinda wild when you realize your mind never shuts off, for our entire lifetimes. It’s just “on” in some regard. Crazy.
I think this will do it. I have no more juice, so we get rest.
3/5/26 – Greenhouse Dream
The Illium, the low abs, the left adductor, the outer hips, the low back, MY cold feet! Just some of the areas that are teeming with new sensation, constant sensation, and activation! It’s so interesting! Yesterday did a really good number on my body, even though I was down in the dumps! Let’s try to not let that happen today! We got a busy one!
Leaning forward into my quads, while staying upright in the Exo, really did my body some wonders! Also I think the standing frame time and the Exo also really helped too! It’s been interesting!!
I had a dream today, it was AWESOME! Honestly it was a really cool dream, I was wearing the braces, at Hessell’s! Working in the back barn, helping the new young kids, and they were all kinda curious about these braces, who I was, and why I was there helping?? I remember explaining to some of my current coworkers the ins and outs of Greenhouse life, it was kinda wild!
as well as working with Mr Mark! I remember calling him up with the radio, him asking me where I was at to meet up with him, and him and I saying we would meet up in #13, (even though we just met up in the back of #5). I walked up to him and it felt like him and I hadn’t skipped a day working at the greenhouse together! It was just like any regular day. He also couldn’t see the braces because they were under my jeans?!
It was crazy too because the braces weren’t even strapped up right, and it didn’t even bother me! It was kinda crazy I was just going with the flow! The one was kinda all twisted and I still just made do with it however it was on me! The work helped me not get distracted by it, so I didn’t care.
It honestly had me in tears, how good my legs were working, and at one point even, I got to give Mr Mark a hug up in standing! What was crazy, is later in the dream, Mr Mark said to me, “It’s God who’s helping keep you up.” And it was almost like I popped out of the dream, while still dreaming, and just thanked God for all the things I’m doing and working on, my Callie, family, and life here still. It was kinda wild, to be honest. Kinda wild how vivid this dream was, so let’s see how today goes and let’s get to it!
Dreams often replay places where the brain knows how movement used to feel.
For me,
• greenhouse work
• walking between bays
• carrying things
• talking to coworkers
That environment contains stored movement memories.
My brain might be using that old motor template as a reference?
It’s crazy! I can literally feel what my body was doing all over the greenhouse!!
Had quite the full day. I’m tired sad now, ugh. My body has such a hard time relaxing. It’s tough. I don’t know how long I can keep up all this nonsense sometimes. Running, running, running.
I spoke to a kind gentleman, Craig at work today. It was wild he said to me, “you know it felt like just the other day you went zooming by me on your bike.” Which, I knew exactly what he was talking about. I felt that. I knew that. Right where I was, up in his neck of the woods. Goodness. He had no idea what had happened to me. Crazy.
I guess, I just wish I didn’t have to have so many thoughts, all of the time. I don’t even know what that means, really. Having so many thoughts but having nowhere for them to go has been the worst part. Ha, makes you realize I must have been up to quite a bit today! Better get some rest.
3/6/26 – Angst & Inner Thoughts & Talks with Jake!
My legs feel….. heavy? Especially my right leg, all the way down to my ankles and toes? Left leg slightly less, albeit I am having to sleep almost exclusively on my right side these days? Fascinating. My lower quads and knees are lighting up with warmth, glutes are feeling a ton of engagement and interoception, and my lower legs are feeling so much these days as well. Really fascinating.
I’ve had some rough / tough couple of days. Mentally speaking. It’s been hard. It’s been exhausting. Just, very tedious having to deal with a mind who has so much capability and capacity, with a body that is seemingly so limited? Or am I? Should I be thinking that way? Because there is so much throughout the day I want to do, but I can’t. Either catch up with someone, carry something, feel myself effortlessly carried through space on my legs. Instead here I am having to slog by, working my entire body just to stay upright, and not getting any relief until I lay back down at the end of the day. It’s hard.
Sigh. I don’t know where I fit in, in my “older” life anymore. I don’t know where I fit in my “newer” life anymore. There’s so much angst with all this, it really is taking a lot of my attention throughout the day. Like right now, my legs will spasm and squeeze me to get up to go to the bathroom, and I cannot even just lay here in bed for a couple more minutes. It starts right away, the need to take care of this body.
Where do I want to be in 5, 10, 20 yrs? Do I even know? Have I even thought about that? Because the thought of having to be confined to this wheelchair at each one of those milestones freaks me out. It stresses me out beyond belief. Thinking about so many of life’s milestones to have to only approach at a seated height has me feeling a gut wrenching, twisting, knot of a feeling. It’s so tough.
I’m happy when I’m up. I feel like myself. When I’m seated so much throughout the day I feel little, overseen, looked down upon (quite literally). It’s a feeling I remember from being a short scrawny little kid, and at least when I grew up I wasn’t so short, and I was fast, and had decent wits about me. Now I have to experience this all over again, only more severe, with me be shorter than a child, just being seated here.
I tell everyone I’m trying. Because I am. It just feels so slow, hard, defeating, and hard to show for any of the gains I’m making, if that means I’m still in this chair. But my legs are getting stronger, it’s just so crappy I don’t get to use them more in extension throughout the day! Goodness.
Idk let’s see how today goes!
My chat and talk today with my therapist ended with me doing something I never thought that I would do? I did some meditating on the couch in his office and it felt amazing! My legs felt crazy, as I tried to focus on the sounds and my breath! This was great!
Talk with Jake
The hunt
We got talking first about his adventure today, and how he is gonna see or try or look into IF we can maybe get a hunt setup for “the Jake Reiter Clan”?!?! This would be cool!
I start telling Jake about my experience in therapy, and then he goes on to tell me this is definitely something I should continue to explore! We got talking about how Henry and I both make sounds and humming in the shower, and how he heard from Henry’s doctor too, that making these sounds is good for us!
Jake began to tell me this is a simple joy in life, he would even mess around with from time to time! When he’s working on the brakes in the barn, he would “hit” the brake rotor with the back of his ratchet, and the rust on the brake rotor would damp the sound, and a few more taps, he would get the rust off, and he would let it ring and resonate! He said he would just let it ring, and he would listen to it, as it fades off into nothing!
It was crazy because I hadn’t ever done this before, nor heard of other folks who have! So I was interested to hear more, and have Jake tell me about his experience! It was super interesting, he said this was a small simple joy in life he would try to engage in from time to time. You don’t need anything fancy, just anything you can hit and let ring! I thought this was wild, so I have some exploring of this do to on my own!
We then got talking, about how us brothers all are endless searchers of Information. I told Jake that him, John, and Paul are all smart! That he needs to give himself some credit now and then! And he went on to say, “it doesn’t matter what it is you’re working on or doing, but always challenging ourselves in whatever area it is, is what I try to do. Take words for example, I try to articulate what it is I’m doing, to the best of my ability. It doesn’t take a fancy college degree to get better at describing things.”
And it was at this point, I realized, that I may try to describe this phenomena as Loving to learn, but Jake describes it different. He describes it as Loving to challenge ourselves, with whatever it is we are working on, and Not being complacent. He goes on to tell me how John, Paul, him, and I are Moving from one challenge to the next. Jake’s exploring a new career with Janel transitioning to full time work, as his boys are constantly growing and changing too! John is about to have a new baby, which will be a huge new challenge! Paul just bought a house, which will be great in its own way! He then goes on to say I am working on relearning to walk, one day at a time! It’s interesting because we all are challenging ourselves with whatever new part of life comes at us. Not just “accepting” or being complacent with any of our lives.
We then somehow transition to talking about the ones we work with, and the thought provoking questions we can ask each other. Not to criticize or question someone’s work, but to illicit thought provoking responses, and get us to explore and help solve new problems! He said he has the best conversations with Mitch and Hank, and it was crazy to me how these conversations are rare, and I felt that with Evan and I at work too!
You know it’s not every day we get to have conversations like this. Jake is an awesome person for me to bounce ideas around with, back and forth. It’s never about being right or wrong. It’s just trying to better help us solve our problems. And I guess maybe that’s what this was all about?
Love my brothers and what they all do, proud to call em’ my brothers, and in the word of the Avett Brothers,
“Always remember there was nothing worth sharing
like the love that lets us, share our name.”
3/7/26 – Exhaustion
Letting my legs push out underneath me… while I’m laying on my side, is a rather interesting feeling that I’m trying to allow my body to settle into. It’s not quite a spasm, not quite controlled, but it’s fascinating to me, how my body this morning is trying to push the limits of hip and knee extension, but without me really trying? So I’m trying to breathe into it, let it happen, and go from there!?
I really want to know how long I could wear my KAFOs for? Could I build up to wearing them all day? Is this something I could leave on, and use throughout the day even if I went back to the chair every now and then? How do I build up to that point?
Okay this is so wild! My glutes and quads, as I’m laying on my side this morning, are working on pushing my more and more into extension!?! This “spasm” if you want to call it that, is pushing my head and torso to the end of the bed, and straightening my legs out! I feel like I want to call it my “belt line” but it’s very low and feels circumferential on my pelvis, a new lower line of activation, and increased sensations right down low into my pelvis!
This lying on my right side has been really interesting for my body! I’m able to actually relax, and now apparently my legs are trying to get into extension on their own! Which is phenomenal! My low back and glutes, quads into my knees, are really pushing! Today I want to build off this! Maybe I can try a couple of shorter, more frequent sessions in the braces to test this theory out of wearing them more!? Get my legs more used to vertical! I did a good job of getting in the standing frame every AM, for 10-25min, to get my legs all primed and ready for the day, and I can feel these carryover effects right now! This is so interesting!
Dang!! My legs even kicked themselves partially out of bed this morning!!! This is wild! I’m now needing them to go the whole way! When I got up my legs felt so much, smoother, and less tingly?! This was so fascinating!
What if I died during my accident? And I never got to exist for these past two years?…. What a thought. Goodness. It’s like a “backwards suicide” / thought of death / thought from the past but in an instance when you very really could not be here. It’s so weird. Weird to have to go through those types of thoughts. It’s almost like I’m transported back in the Tacoma, driving somewhere in the Keweenaw. (Sigh). Hard thoughts.
I miss so much. I’m working hard in this current form, and it’s so hard. Hard to see what others are doing, what they’re enjoying, and I’m over here trying, but seemingly never catching up. To myself, really. Let’s just keep working for another day.
The Astronaut on Earth 
Leave a comment