9/7
Seriously I’m feeling the most like my legs are “normal legs” after just waking up from this nap! My hips are feeling the pants around me, leg on the bottom side is propriocepting much more, knees are feeling so much! My hamstrings are feeling more in their contracted state. My quads are feeling ready to go as well! My left abdomen and hip flexor is just as temperamental as usual. My glutes are feeling a break after a long week, and weekend! Calves, ankles, and feet are feeling so interesting as well! Much calmer, tingles slower, and more alive and there!
Leg activation has been extremely high today! After a long week prior with the Exo and trying my hand at camping, I didn’t give myself very much time to rest! So today finally I’ve been able to, and my legs are very charged up! Especially my hamstrings, my left hamstring really needs to relax! It’s a lot of ‘routine maintenance’, getting this body back into standing condition and shape for walking!
(Side note) is that what you do with more than just a little heartburn? Just swallow it back down? Weird how much more my body has been having heartburn after I eat, especially in the standing frame. It really has been making some massive changes, to say the least!
So I wonder if my left side of the body is affected more because my right hemisphere of the brain is what stores trauma more often?
I was also thinking about sleeping on the floor, on the ground while I was camping?… is the ground that important for my recovery? Did it help me crawl better, all that time ago? Truth be told it’s been a while since I was actually in contact with the grass and ground? It’s got me thinking!
9/8
This is interesting, I decided to not go pee last night and for some reason, my legs didn’t get super sweaty and I didn’t have an accident, and my legs are very charged up? So weird it’s like because I didn’t give in to this initial sensation? My body was able to interpret this sensation last night as something else? To me I’m very puzzled. I don’t quite fully understand this. I know that I was telling myself that all the sensations in my lower pelvic region can’t always be to have to pee, and so it was almost like last night my body was able to process them differently? I’m not sure. I do think I got hydrated last night before bed, and stopped drinking at a decent time before bed as well before. I feel pretty well rested, my body feels very engaged, and I’m just confused why I look like I didn’t get so sweaty last night? I definitely had to spend a good amount of time last night working on staying asleep, and just laying there with my eyes closed working any and all mental imagery I could. Definitely had a full bladder by this time this morning with around 700ml. It’s so odd, my body. All the signals its learning to try to process.
Operant Conditioning – “Operant conditioning, also called instrumental conditioning, is a learning process in which voluntary behaviors are modified by association with the addition (or removal) of reward or aversive stimuli. The frequency or duration of the behavior may increase through reinforcement or decrease through punishment or extinction.” [2] This term and idea makes me think about the Garmin watch, and its usage of the Body Battery, and other tools on there. It makes me think that we are almost unknowingly using it as a tool in operant conditioning? If our body battery says it’s low, we will think it’s even “lower”? And then we feel less energized?
Okay so today was wild. At PT I was up in the Exo again, and I actually got my heart rate up this time! I just kept going and going and I didn’t want to stop! So I went until I scuffed the floor before I took a break, and honestly for just the hour, getting in 1800ft was really great! I was really proud of myself! It felt really good, and it was crazy how hard it was to work on breathing, digestion, and walking all at the same time! Honestly, it was extremely hard, so what I decided to do was just focus on breathing. Breathe in, in. Breathe Out, Out. With each step I tried to work in this cycle of 4. It was hard, my heart rate would rise, my focus would get slurred, and it was difficult to do anything else besides focus on my breathing! But, here I go, I keep targeting the next doorway, then the next, and the next! Sure enough I was able to keep myself going!
OT with Danica was also great! I did an insane amount of core work! I honestly was having a really hard time with some of the ab movements with the band, the way I was holding my arm to my chest. So interesting! This transfer from the floor to the chair is still really getting me. It’s tough.
I’m cooked. I need rest. Here we go!
9/9
Why does the heart have some of the wildest names for components inside of it? “Along the Bundle of His, and through the bundle branches to Purkinje fibers in the walls of the ventricles.” [3] Honestly, what on earth does this mean? Sounds like I took a stroll somewhere in The Phantom Tollbooth. Where’s my dog Toc? Huh, interesting set of readings for the day. Not much else to report on at the moment, but interesting all the same.
9/10
Man oh man, I’m really trying not to get up in the middle of the night. It throws me off so much. These past 3 nights I’ve attempted to sleep all the way through the night. This past night was a bit tougher than the last, and last night I didn’t get a ton of sleep. I can feel it in the front of my forehead. It’s not ideal. I have been taking some cyclo before bed, some magnesium, and stretching or getting in the standing frame, and usually that helps, but it’s still not there yet. Not great. Especially when my body needs a lot of rest and sleep!
I had an interesting dream that was tied in to lower back sensation and activation, I wake up, and I’m feeling those areas of my body that much more prominently! Which is really interesting! I keep trying to be able to quantify and update my words to help describe the increased fullness in my legs, but sometimes that’s hard to do. I can feel a lump in my left side throat, almost makes me think it’s a lymph node. This has happened before too, when I’m in need of more rest. I had a busy day yesterday at work, so I’m not surprised.
It’s a lot of give and take, exercise and rest. Trying to balance that out. I also found it interesting last night how “stressed” my body has said it was most all day yesterday. What else can I do to help my parasympathetic nervous system?!
I’m not gonna lie, it’s weird to notice how inhales are so powerful for exerting new movements. Ones that are so difficult, you cannot do without taking a breath to start.
9/11
Well, I sure woke up this morning with quite the increase in sensations in my body! It was pretty awesome feeling the enormous jump in fullness they are having after the bout on the floor late last night!
It’s lunch time, and my stomach is talking so much! It’s really interesting, I don’t think I’ve quite heard this much activity from him before!
So therapy today when I was up in the exoskeleton I decided to try something different. Alright, so what ended up happening was as I was making my way around, and I knew that I was looking down too much but I didn’t have Callie to look at and also I was just kind of having a hard time alternating from reciprocal crutch movement to two-handed crutch movement. So what I did is on one of the laps, I decided OK, “just look at the door and try to read the door.” What I ended up doing was something really wild… I didn’t look down. I just looked at the door and was trying to read the numbers and letters that I couldn’t read. The letters were too far away. Also, my head was moving all over the place and I realize I had to work on keeping my head still too. So, I was really focusing on shifting my weight and I never even thought about where I was setting a crutch or how my foot was gonna kick forward! All I did was focus on the feeling in my legs and focusing on contracting my quads. I feel my foot pressed down and keeping my head just slowly and fluently moving back-and-forth just like when somebody walks, and it was freaking hard! It was so hard! What I was trying to do was not have my head move around so much. Because what was happening when I was moving my head around too much, I wasn’t focusing on contracting my abdomen, my legs wouldn’t move right, and then I would scuff and then stop. So when I first started to do this when I was first started using the Rewalk, what happened was I was scuffing and needing to stop a ton. So all of a sudden I turned my head up, kept looking forward, and I made it a whole lap around the basement floor without looking down!!! It was definitely really hard, and it felt wild to do!
I’m pretty sure that’s how it must work. I work my body to the point of exhaustion and then I keep going just a little bit further. So I think what happens is, he (my body) recognizes that these parts of my body still need to be used, and so I believe that part of the “waking up process” for my muscles is that if they know that they’re supposed to stay online, They (being my muscles) will. When you’re really tired, It doesn’t mean that you can’t do anything anymore. It just means sometimes you push it just a little bit further, and our bodies seem to respond in some pretty miraculous ways! I think that’s what’s happening and I can feel it in my legs right now! At like 8:30 at night in the past my legs wouldn’t have any juice and be cooked, but I know that after moving around in the chair and going out to eat I think it’ll be good to just get up in the standing frame for a little bit! Glad to have got some walking in for my birthday.
Oh wow, oh yeah. It turns out it’s my birthday. What a weird day. A day with now too many symbols. I don’t know why it seems to be this way. Sometimes the irony is too much. Or, is it all just a coincidence? Seems to me there’s two schools of thought here. And because of that, I like to look optimistically down the center. Maybe there are reasons why things happen, but it’s up to our own free will to identify when they happen? Only by our free will, and our own conscious, are we able to identify when these occurrences happen? I don’t know. It’s hard to say sometimes either way. That’s a big reason why folks say that they have faith! That’s all okay. We can’t know everything. So, sometimes that’s when it does, come to faith. So weird, how this world works? Maybe it’s just the world that’s weird. Maybe It’s mostly us, the humans that are weird? Weird then, how we work!
Had a great dinner with Callie at Vanguard and we made it up the steps without a hitch, so that was great! Time to get some rest!
9/12
Made it up in the Exo this morning at 9! Holy smokes have I been tired today! I really need to get my parasympathetic nervous system working better on long days like this! In the past week, I’ve been up in the Exo for around 8hrs! I’ve walked more in the past two weeks, than the past 2yrs! Honestly it’s amazing! I’m up in the standing frame right now, and I can feel how much more my glutes and quads are firing at the moment, I’m really working on contracting my ab and leg muscles consistently throughout the entire duration of the standing frame work!
Today was the day Johnny Cash died. The man in black. Seems to me, that the color, has so much more to its meaning, than what’s on the cover. It’s also interesting too, how Jack White has been on my mind lately as well. A rather humble beginning from Detroit, to a massive career in garage rock and more. I really like exploring some of these pop icons, that may not be from the mainstream culture. Both Johnny Cash and Jack White are HUGE stars, but necessarily the most mainstream? I guess? I don’t know, I’m just more drawn to them because they’re more authentic versions of themselves, even if people don’t like that. And for that, I appreciate them.
I’m tired. Of always sweating in positions you would think, would be restful. I’m tired. Of seemingly never being able to get rest. To have to lay awake at night. To never actually get rest. My body. He’s tired. Of having to never be able to get up and stretch out properly. To have so much tightness, stiffness, and weakness. My left hip is beyond aggravating. I don’t know why he is so tight. (Sigh)
It’s so odd, that our bodies seem to be so well suited for movement. For physical activity. For work. Yet it seems more and more, more problems keep arising from our sedentary lifestyles. Who has it better? The farmer or hunter/gatherer of yesteryear, with enough food to take care of himself and also his family? Or the sedentary man, who acquires health complication after complication, from lack of movement, screen time, and under use of his mind? seems so odd. To have this mind that can think of these situations, but not really do much about it, except work everyday, like the farmer and hunter. I’m just trying to survive. It sometimes isn’t very pleasant. For a lot of it. But there are moments of joy. I need to remember that.
Too much joy, and you almost need a change of pace. People get bored too easily. They get content. Life is too easy. They need that struggle. Like the peasant or slave that our ancestors were for generations. For centuries or even millennia. That’s hard wired in us. This idea of constant “happiness” or Joy is kinda facetious. I cannot begin to fathom why, we are in this constant search. It’s almost what America in general is, it seems. Never having enough. Since the beginning, it’s been a constant search for more. I cannot get over the amount of contempt by everyone else around it seems. Are we that unhappy? are we all that entitled? More. Taking more. That’s all people want. That’s all we’ve ever wanted since the days of past. So what’s interesting though, when you give that up for someone or something else, you get a sense of relief. That’s where all forms of religion come in. They help you give up your inner sense of wanting. My mind wanders like this when he’s hurting. Sigh. My left hip won’t stop. People want, to be with, their people. There’s something special about that. And something more to it. I hate this sweatiness. And the autocorrect. Why oh why. It doesn’t all seem to matter what I do, sometimes. I just have to wake up to this same story and try again. Life doesn’t give you do overs. This is all we get, for this life.
More. More spasms. I freaking hate that word. I want it gone from my lexicon. From my body. I need to get my body back. I’m tired of this. Is our body, not even ours? Is that what this is? What about our minds? How much do we control?
My parasympathetic nervous system (PNS) needs so much help. The Vagus nerve is a huge component of this system. Turns out Vagus, is Latin for ‘wandering’. This wandering nerve is really something to be reckoned with. I don’t get it. Why. Wait wait, is this why my left side is so much more affected? Because part of the Vagus nerve runs over there? Huh. Sigh. I better keep getting on the floor to crawl. I better keep working on my body. Just like that peasant in me needs and wants to do. I hate having to endlessly put forth so much effort for existence. I’m getting very tired of it. It’s pretty hard, at moments like this. But I’ll keep on working.
9/13
This past night was absolutely, one of the worst nights I have had in quite some time. My body is tormented with the ability to walk, not walk, movement, everything, and it’s sending these crazy signals to my legs and it’s getting what feels like worse and worse. I tried to get caught back up on the restless night so I “slept in” later to get caught up on the Z’s I missed. That didn’t work.
Is that what this is? Is this why I have had so much anger, hatred, resentment towards myself? I’ve had a very rough morning. Is this what this is? (Sigh). Is this me having to accept myself in this flippin….. wheelchair?….. is that what this is? All this hate, self loathing, and resentment for being alive? Is that what I need to do? Because, it’s tearing me up. It’s eating me alive. I don’t even want to turn my head up, and see my reflection. This is just so hard. This is in every sense of the words, “not easy”. This whole existence is so hard. It makes me really have a hard time. So I guess, is this me needing to work through the fact that I’m still Joe? Even if my body is awful right now, not cooperating, and exhausted? This has been the most incredibly difficult experience, mentally and physically, that I could have ever expected to have gone through. I don’t know what I can say to myself to realize this is “okay”. I’m still alive. My brain works (seemingly better than ever). I’m getting stronger every day. My legs are responding. I’m working on getting the Exo. I started the training. I have Callie. I’m getting married to the best woman, scratch that, the best person in the world. (Sigh). I need to remember and keep the steadfastness with my recovery. I will never stop working on my legs and body. Even if that means being in this chair right now.
Let’s turn today around. Let’s get moving, have something to eat. Hug Callie. This morning and past night was extremely horrendous. I get such little sleep, and my body is the most temperamental thing ever, it’s unreal. I know the comparisons to the outside world keep creeping in. About what a “wedding” is supposed to be and look like. I’m crying right now 😢. I’m crying for that part of me that wanted to the man to be standing there in front of the Altar, walking my mother down the aisle, and dancing the night away. Well, turns out we are going to try my darndest to do just that. Even if that means for some of those items above, that I will be in the wheelchair. I’m gonna do it for my Cal. The best woman I could have ever gone through this experience with. Even if she has a hard time communicating. She’s working on it, just like I’m working on these legs.
Let’s see how it goes today, let’s do it.
“Well, you wonder why I always dress in black
Why you never see bright colors on my back
And why does my appearance seem to have a somber tone
Well, there’s a reason for the things that I have on
I wear the black for the poor and the beaten down
Livin’ in the hopeless, hungry side of town
I wear it for the prisoner who is long paid for his crime
But is there because he’s a victim of the times
I wear the black for those who’ve never read
Or listened to the words that Jesus said
About the road to happiness through love and charity
Why, you’d think He’s talking straight to you and me”
This song hits me very hard. I really like it, and what he has to say, makes me think about everything that goes on, and helps me with my steadfastness as well.
So Pilates actually went really well today! I really need to work on using that Magic Circle more! Honestly, Therese is right. It’s not that my muscles that are spasming more often need to be stretched, but rather, strengthened! For whatever reason, when she said that, it clicked. I thought in my head, “oh yeah! This is it, this has been what I’ve been missing!” In reference to going to Pilates, working with the magic circle, and also working my legs in multiple planes/ different directions! This to me was huge, because I’ve been sleeping so poor these past couple days after the Exo, I couldn’t figure out why I was sleeping so bad? But then it clicked and I realized, I need to get my legs in more than one position/ multiple positions. This I believe is why crawling and getting on and off the floor has been so significant to me. Sounds to me like getting on the floor/ even with Exo work, is actually a really good idea! Strength, stretch, control. Therese was saying these are the 3 elements we want to make sure we are incorporating into each of our movements. I’ll have to think more about this, because I was noticing too, on the reformer, how on the return phase of the cycle, I was really in that much more control! I was actively engaging my glutes the entire cycle, on the push, and on the return! So crazy how our muscles work. Eccentrically and concentrically, we need to work em in both directions!
Made it in the standing frame after dinner! Hopefully I have a good nights rest! Glad to have made a great turn of the day, it’s been a hard time, but we can make it. Just one day at a time.
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Works Cited
- Heisenberg, Werner. Physics & Philosophy: The Revolution in Modern Science. HarperPerennial, 2007.
- “Operant Conditioning.” Wikipedia, Wikimedia Foundation, 14 Aug. 2025, en.m.wikipedia.org/wiki/Operant_conditioning.
- “Cardiac Conduction System.” Wikipedia, Wikimedia Foundation, 31 May 2025, en.m.wikipedia.org/wiki/Cardiac_conduction_system.
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