10/26
I had this interesting analogy last night, about how my body works now. I compared it to a crappy car, and how it needs constant maintenance on it. Since my autonomic nervous system doesn’t work quite right, right now, I’m stuck with the mental burden of having to run all the automatic processes our body does in the background. Albeit, parts are slowly coming back online. I don’t have to consciously beat my heart or breathe, but additional functions, mostly related to my GI, I’m on the hook for.
Harmony Hall
I feel lost. I heard a song today by Vampire Weekend “Harmony Hall”, “I don’t want to live like this, but I don’t want to die”
I don’t wanna live like this
But I don’t wanna die
And it made me cry. I guess, it just captured exactly how I feel at times, trapped in my body, but not wanting to give up. And I didn’t know how to say it, in any other way. It’s truly a lot, for me. To have to live with it all. I can go back and forth on it all, and it’s driving me, what feels like, insane. It’s just more than I can bear, most and some of the time. I don’t really understand, the need to keep stringing people along. The thoughts and ideas about getting up and just going to the bathroom, never leave my head. In my head, I’ll never loose the ability to just pop up, kick my legs out of bed, and sit up and stand up. I just do it. And it is something I see and feel most days I awake. But when I have the just lay here. And be cold, uncomfortable, sweaty, is just so unforgiving. It pains me. I have to wake up each day and talk to others in society as if none of this has ever happened. But it did. And here we are.
10/27 – Stabilizer Cascade Theory?
OK! There’s three big areas of change than I’m noticing. In my paraspinals, in my low back, the area around my right abdomen, and my left hip is getting straighter and straighter! Also too, my legs when I’m laying down sleeping are getting more and more into extension! So it’s interesting because my low back, glutes, and hamstrings are really getting my hips more and more into extension and boy oh boy, feeling all those muscles waking up and squeezing like crazy! I love that sensations are going into my pelvis and going into my glutes and hamstrings too. It’s really interesting and it feels like it’s pulling my whole back down and back. So that’s really cool! By the right side of my torso in my transverse abdominus / obliques and even the muscle on my right, to be honest, they were feeling really spicy yesterday, especially in the standing frame and I’m noticing those guys waking up! And then my left hip area, this has been interesting because my hips are getting into extension more and more as I’m laying on the right side of bed. It’s so weird because it does still spasm, but the spasm that would put my hip in flexion all the time, used to do that before, but now it’s putting my hips in extension? I don’t really fully understand it but those muscles are tight and I’m feeling a lot! So I noticed that with my right hip and right hip complex too. It feels like the right side of my abdomen is catching up to my left side. I really do think that trying to squeeze my glutes for the majority of the day is really overflowing And down into other muscles and muscle groups.
I really needed a lot of sleep and rest yesterday, I needed to just get caught up from that not so great sleep the night before. It’s so interesting to, when I squeeze my glutes like this more and more I notice how I’m able to put more weight in my feet? My shoulders are set back, and my feet and quads are really engaging. So it’s like completing the chain from my head to my torso? That’s kind of what I feel, and it’s just slow and steady progress. It’s tough when I have sad nights like last night.. so I’m trying to keep my abdomen engaged and my glutes, and I’m pretty much just trying to focus on those because it has a cascade effect, I’m noticing. In fact an overflow effect from just working these muscles?
I noticed too, that my left side of my abdomen has a little more tone and has a little bit better contractions than my right low abdomen, and I’m wondering if that’s what’s happening? My right side is now catching up to my left? I wonder what’s gonna happen next, the area between my glutes and thighs? I’m gonna start feeling that firing up?? Or I’m gonna start feeling combinations of contraction? Like squeezing my glutes and quads together so my hips and knees go into extension at the same time? That’d be pretty cool. I know my hamstrings are stabilizing already and it’s really just my quads who need more help I think? Need to pick up the slack? What are the other stabilizers of the knee joints? I need to figure out the stabilizing muscles for the joints in the knees, and focus on before? It seems to be legit and fall in line with my “Cascade / Waterfall” Theory?
So, If stabilizer muscles in your joints have to be on, let’s say the majority of the time you’re awake, when you’re standing, walking, doing anything actively, wouldn’t that also mean that our stabilizer muscles are engaged and more neurologically active than some of the other large muscle groups? To me it almost seems like trying to tap into the stabilizer muscles first and before the large muscle groups neurologically makes sense because they would be the ones that might actually be getting more of a signal? So I’ll be able to get signals down to other areas if you activate the ones that might be receiving stronger signals? So start with those first?
10/28 – New Camera Day!
What in the?! I wake up to have to go to the bathroom, and it’s my right leg that’s sweaty, and not my left?! What is this change all about!?
Goodness! There sure is a lot of activation going on in these legs and it feels like from the knees down especially when I squeeze my glutes! What a sensation thru these feet! So I was thinking about this, and if I’m trying to get my muscles to turn back on and stay on, but it feels like is, I’m getting them to activate, then spasm, then voluntarily contract, then I have to hold them on. That’s been one of the tricky parts is all active engagement for a significant period of time and the hope is that constantly sending more electrical signals to my muscles is that overtime they’ll do that automatically? I don’t really know how it works. I guess I’m just being hopeful? Like it seems like something that should theoretically work, and I can hold them voluntarily, telling them to squeeze, and hold them on, but you think that I should be able to transition this into an automatic response? Oh yeah, and I gotta talk to Joey about The last idea that we were talking about. That would be a very interesting project to do, and the research on that does sound very interesting!
Things are tightening up on my entire backside! It’s pretty exciting noticing and feeling so much and so many changes! Ha ha now I just have to figure out what to do about this fat belly? That was another thought that I had, it made me think about infants, and how they’re kind of pudgy and how you almost need that fat before you have the muscle. I also have no idea why? Like is that a function of our bodies and a form of protection or is that just a function of our bodies, to put fat in places first that need muscle? I guess I can always work this Belly once I’m standing well?
Honestly I only got in the standing frame once, and was super busy today not a ton to report here.
Also isn’t it weird to think that there was a time when pictures weren’t so common? As in someone needed to own a camera, (which also were not always so cheap)? And then knew how to use it? The list goes on and on, but it makes sense why you don’t see so many pictures from back in the day, pictures just took a lot of work!
10/29
Okay, that has got to be one of the most significant jumps in sensation yet! My left hip flexor, extended, my low back and paraspinals, my outer glutes! My lower glutes! My low pelvic floor from the front to the back! My quads! Holy smokes my outer glutes! My low abdomen is relaxing! My hamstrings are feeling less tight (my left still a bit more than the right). My knees! My shins and calves feel like they have leg warmers on! The back of my right calf especially! My feet feel cool, and smooth?! When I try to wiggle my toes, I don’t just feel hard and tight tingles, I feel different sensations! It’s very interesting when I breathe through my diaphragm how my low abdomen doesn’t really tense up! I’m telling ya, it’s gotta be from going to sleep on my belly, and really letting my anterior side relax. It needs it so much!
As soon as I got up, I could feel how much in my outer thigh, outer abdomen, glutes, quads, like they’re all this waking up this is crazy. This is very significant!
PT today went amazing!!! I know we started off a bit rough because the Exo was throwing some errors. It was interesting too, taking a peek at the data log, and how it reminded me so much of the data we are able to collect off the power tools.
I was able to work on doing inclines for the first time! It was pretty interesting because Adam had me thinking at first it might end up being pretty difficult. I was slightly concerned, and I figured the best way to do it, was well, doing it! So as we rounded the corner, I ended up starting down the ramp, crutches forward. I proceeded down the ramp, slowly picked up speed, and well, wouldn’t you know it, I made it! This whole session, I was really working! My heart rate was up around ~150bpm or so, and it ended up being a really good session! I wasn’t able to start doing step training yet, but that’s okay, we’re still moving!
This day has been a long one! I was in the car for 2hrs after PT!
10/30 – Dancing Lessons from God
“As Bokonon says: ‘peculiar travel suggestions are dancing lessons from God.” – Kurt Vonnegut Cats Cradle
You know I’m not very familiar with this quote, but to me, it reminds me of what I’m doing. Following my mind (in addition to Pt’s, Pilates, movement practitioners) to different parts of my body has been an interesting way to unlock movements. Kinda like I’m getting dancing lessons from God on how to move my body again? Man oh man, that sure would be something! One day at a time, eh?
“To believe your own thought, to believe that what is true for you in your private heart is true for all men — That is genius” – Ralph Waldo Emerson
This quote struck a cord with me. I really need to hear quotes like this sometimes, because I know how important my own conviction has been to my recovery. And applied to so many different aspects! “ to believe what is true for you in your private heart….” I really do need to believe in myself to get back walking. Day in and day out, it’s hard, and isn’t getting easier, but your faith in yourself is a huge part of what got you here. Let’s not forget that, Joe.
What’s been interesting today, is how the busyness / hectic-ness that we all have, can create an environment that becomes very difficult to sometimes critically think. And that’s been the case, as I’m on my way to San Diego! Callie and I made it. I can’t believe it, and I can’t believe how seamless it’s been, tbh. It’s been very interesting. I just need to make sure that my legs stay loose and don’t tighten up and freak out for not getting upright. It’s been wild. All the preparation, list making, list checking, double checking, and then finally moving forward.
It’s been interesting too, reading Adam Savage’s book, “Life is What You Make It”. I’m only 20 pages in, and it’s made me tear up like, 3 times so far. Talking about creating and making is something that’s been so intrinsic into my lifeblood, it’s been a hard aspect of my life to be taking a slight “break” from (I am not sure if you can call this a break). I realized though, that throughout this process, I have been “Making” this entire time. Firstly, helping heal my body. This has been an arduous task, to say the least. I don’t really get “rest days” and that’s been one of the hardest and most difficult aspects of this trip that I wanted to make sure I was ready for. That’s what I need to do, each morning, get up and do it. Go to the gym. Easy done. You’re up anyways, might as well move your body as much as you can.
Speaking of which I just remembered I forgot the travel bed rail. Great. This is going to be fun to figure out. I realized too, that my problem solving ability has come in especially crucial for my well being and survival these days. I don’t know where I’d be without that. Pretty glad to have a decent head on my shoulders that likes to solve problems (and not all of them I have wanted to solve, trust me, they haven’t always been fun). I’m just now thinking about gearing up for my next big wave of making. I think this is the fuel I needed to help kick this off for good.
So when I squeeze my elbows into my chest and abdomen on my side, I really feel my glutes engaging, and most of my posterior chain! My legs even kick out too, when I do that?
Made it to the hotel, time for some rest.
10/31 – Hard Night / Try Again & Upset Tum
It’s crazy, the world is a wild place. I’m over here relearning or re-experiencing everything again for the first time. I was saying to Callie that when im having to do anything “new” it almost undoubtedly is hard. It’s wild. To have to experience some of the most mundane tasks, like getting into a “new” vehicle, is almost certainly a little “hard”. I just had a thought, and I thought about this when I was going to the bathroom of the McDonald’s with a token needed to get in, “just send it” while I was getting back up into the chair.
The more hesitation I take, or give myself while doing something “new” the harder it gets. I don’t think I realized that, until now. Even if I don’t get it the first time, at least I’m giving myself information about what I’m doing.
I’m cooked. Got a new hotel because the other one just wasn’t working for us. We stayed the night, as tough as it was for both of us, but we got to checkout without an issue. This bathroom was not super kind to me.
10/31 contd.
I’m looking at the worker out front of the grocery store, just sitting and having a break. Thinking about how he has lived a full life of his own. In whatever part of San Diego we are as Callie ran in to get batteries for the camera. How do you end up in your 50’s (roughly) working at the grocery store? Did he also have hopes and dreams of his own? He most certainly did, I’m also certain of that, as he lit another cigarette on his break. He’s not on his phone, or anything. Just sitting and having a smoke. He just put the smoke out on the concrete ledge he was sitting in, and stowed away his partially smoked cigarette in his right sock.
We made it down to the cliffs! Wow, we even ventured out! I’m glad I got off pavement, it’s been too long.
Well, this was the meal that set me over the edge… I think I laid down too soon, and it set me over.
This night started out a bit rough. I think it’s because I laid down too soon, but I ended up puking out my nice dinner I just had with Callie. Ugh. Let’s try again tomorrow. Oof.
11/1 – On The Boat!
We’re going out to try to see some whales this morning! I hope we do! Gotta get ready to get out by 9am!
Made it on the boat! Here we go!
Callie and I got a spot right up front on the bow. They told us to sit or stand anywhere! So we picked right up front!
What was cool were all the views of San Diego from the water! We could see the Fort we were at yesterday, as well as the huge Naval base! Goodness! What a view! It’s interesting too, since in this wheelchair, how much time I’ve spent on water trips? Crazy it’s worked out this way?
So we make our way out! But then I started to get queasy, and I’m thinking in my head, “oh boy, this isn’t good.”
The crappy part is I’ve never got seasick in my whole life. Why is it that after this SCI, my body has to be so temperamental? Ugh, that stomach and GI tract of mine sure is making some changes!
But before we know it, we start seeing some huge schools of Dolphins!
This was great! At one point, we ended up seeing over 300 dolphin at once! They were even splashing us up all the way on the deck up front on the bow!
Pretty free, all these dolphins were. It was cool to be able to see these fellers out doing their own thing in the wild. Makes me miss being that free, up on my two feet. Soon enough. I’m working on it! Let’s keep it up!
Made our way to the Hot tub! They had this lift that I was able to use to get in it, fairly easily?! That was alright to use. It’s sometimes a little humiliating having to use these devices, but I’m still out here doing it. Water felt good!
This was a fun one! In-N-Out vs Culver’s! We ended up having In-N-Out for the first time, and Callie and I wanted to put together a whole summary of the pros and cons of each! We may be a little biased, but to be honest, I think Culver’s has a few notches on In-N-Out! Full review to come later!
We’re on vacation, but my body still needs a ton of work and attention. As long as I can take care of him, I should be good to try and have some fun. I’m glad I was able to get Callie out here, she deserves this so much.
Uh, wow. Just, wow! Today has been such a jammed packed day! We did so much! And I’m even working out a little bit in the hotel room at 7:59pm right now! Let’s get some rest, busy day ahead tomorrow as we drive out to Joshua Tree!
Works Cited
- James M. Wakeling, Benno M. Nigg, and Antra I. Rozitis. “Muscle Activity Damps the Soft Tissue Resonance That Occurs in Response to Pulsed and Continuous Vibrations.” Journal of Applied Physiology, 2002, journals.physiology.org/doi/full/10.1152/japplphysiol.00142.2002.
The Astronaut on Earth 
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