8/31
This is another morning of some really full sensations in my lower extremities and joints!! Honestly my ankles have never felt so full! My left leg was even trying to help pull himself up and around onto the footplate too, this morning!
Sometimes, I feel like my mind is still here, but my body and brain are slowly driving away from me. It hurts. It makes me so sad to have to see every bit and part of me, get sucked away. I feel useless. I’m not happy about how this has to be the way. It’s frustrating too, how the one that I’m with doesn’t want to talk to me about that either. Everyone complains, complains, but about what, really? They don’t get to “do anything?” They aren’t able to “vacation?” Seems to me our concept of living has really gotten away from folks. Because there were times regular daily life was not so easy.
9/1
It’s…. The 1st of September. The month that Callie and I get married. The month I get started with the exoskeleton training. The month that we saw a log together. The month that we are to see as well as meet, all of our friends and families! Honestly, it’s a pretty big month! Oh yeah it’s my birthday month too. As well as 2 other siblings, Laura and Paul! Callie’s mom’s too! My Gram, who’s turning 96! And little Julia at 1! There’s 3 other weddings this month, Jake & Janel, my parents, and also gram and papa’s anniversary would have been on the 23rd of Sept! There’s a lot going on this month, to say the least! You know, this is the start of fall weather, which I’ve always historically loved! It’s the first day of school, too! In France, they call it “Re-entry”. Re-entry back into gravity, walking, routine!
One interesting thing to note, is now when I’m laying on my right side in the bed, my left abdomen will push down, “kick” hard, and I can feel my left hip go in extension! It’s so interesting because these sets of feelings have been so new to me! The feeling of laying down, and also getting in extension at the hips. Usually when I’m laying on my left side, my left hip freaks out, and goes into flexion, spasms, and freaks out!
This weekend, I spent a lot of time yesterday and Friday working on inhibitory signaling. Need to keep working on this!
Made it in the pool!!! Maybe only for a little while, but it still counts!
Had a rough ending to the day, I’m pretty sure I must have just been completely exhausted.
9/2
I had a rough night. My body is so fiery. It’s not even funny. I’m definitely feeling a ton, and had dreams up the wazoo, but I’m still shaking off the rocky start to the week, that last night was. I hadn’t thrown up since before the accident. That was a first. After I got all opened up in the standing frame, I thought I was doing a good thing by getting stretched out at the end of the day, but I don’t know. I don’t think it may have been wrong. It was tough. There was so much tossing and turning and rolling and trying to get gas out of my body. I felt like all it was, was just a wild warm up to get sick.
I feel not extremely well rested, my body’s trying to recover. Honestly it needs a night of recovery from last night. I need another new night now to get rest. Just a new one that will help! I don’t know if this was from the one beer I had, But it sure is looking like it. I don’t care that I’ve been like this, but my body’s been acting like this for a while. I don’t know last night was especially hard.
Okay so this was interesting, I’m standing up in the standing frame right now, and my body is loose and engaged! Honestly it’s wild how awake and alive I feel after getting back from the gym and doing some cardio! I was dragging all day, and that time I took to go and hit the Heavy Bag, was honestly so well worth it!! My body feels so alive and awake! My quads and glutes in the standing frame, along with the lower legs and feet, are seriously really fired up!
When I was hitting the heavy bag, I did an interesting movement at the end, it was really interesting because my body was feeling looser and looser, but simultaneously engaged. It was so interesting, what I did was at the end, I take the gloves off, get my feet on the ground, and grab the bag. I then go push the bag, through my feet, and up through my body, to my arms and hands. I push it back and forth, and with each push, I’m feeling more and more through my legs through each push! So I then begin to do something different with my leg engagement. Instead of just squeezing my quads on the push out, I decided to hold my quads and glutes, the entire time! It was wild, out of the blue, I’m moving back and forth, and go, “yeah what if I just squeezed my quads and glutes the whole time, and then tried to build and build off the squeeze, with each push?” And so I did that. And it… worked?! My legs right now even at the end of this long night are feeling so much and so engaged! Is this what I needed to do and try while also getting my heart rate up? What is this deal?
Oh my goodness! We did it! I’m in bed by 8:30! I can’t believe it! I never thought that it was possible, I’ve been on the go since 5:50am this morning, I’m really happy with the fact that I’m getting to take a moment and “catch my thoughts” for the day. Goodness so many things are happening!
This is about to be wild, it didn’t quite hit me until today that I’m getting up in the Exoskeleton tomorrow?! I had a conversation with my dad this morning, and he goes, “wow, so you’re starting the training tomorrow?” And I go, “Well I start Wednesday, not Tom….orrow…. And trail off at the end, when I realize that he was right! I am starting tomorrow! This is incredible, and amazing! I can’t believe this! I better rest up for a big day tomorrow! My body is feeling so interesting for such a long day!
9/3
The Day is here. I feel like my mind can’t handle it all right now, and to be honest, I need to get ready and get myself all prepared for today. So up in the standing frame, use the leg stretcher, get some time in at work. It’s all happening. It’s wild. I’m pretty fortunate to be in this situation, I’m going to make the most of today!
How’s that saying go? If you don’t get invited to the party or you can’t get to the party might as well start one yourself? Or if you can’t get in to the Shirley Ryan, or the Craig Hospital, if you can’t get in there to be able to use their exoskeletons I guess I’m just gonna try to buy one myself. 🤷♂️
My legs are pretty charged up today! I definitely got a good amount of rest and honestly hitting the punching bag and also having the punching bag bump up against me like bumping up against my knees. I think it is really really good for my body. it reminds me of how infants and toddlers are just bumping around all the time almost like that very firm tactile input is actually a lot more important than what we actually realize. Because as I was doing that last night I was feeling more and more in my knees and my legs, and I feel like I’ve almost noticed this before as well! Kinda like when I fall, or I’ve fallen on my hip or fallen on the floor when I’m crawling, or when I bumped down the ground to get crawling as well! It would be interesting to explore this idea a little more!
Okay, okay, okay! It’s really happening! Training has started, and it’s all underway! I cannot believe it!!! This has been one of the most wild build ups, the most wildly anticipated events and devices of my life, honestly. I’ve never experienced something quite like this, it’s truly remarkable. I’m really still in awe at the whole day, to be honest. I’m pretty lucky to have been able to be working with some amazing people to help me pull this off!
This has been an interesting time, talking to the PT’s and getting ready to get up in the Exo! I remember the PT from Lifeward talking to me about this, noticing how tight my hips and hamstrings were, and saying, “I don’t know, we will have to see if you are able to get up today, but don’t have any expectations for that. Some people are able to, but some need 1 or 2 days, 1 week, 1 or 2 months to get it. It all depends. So it’s best not to have expectations today, and just see how we do.” So when she told me this, I really wanted to make sure my hip flexors and hamstrings were relaxed and simmered down. Because otherwise I did not think I would be able to get up. So I spent time crawling back and forth on the mat, and she goes, “oh wow, your injury really is incomplete! I haven’t seen many people be able to do this!” And that was reassuring to hear because I have no idea how other people do in this situation. It was very interesting to hear. So I keep working my legs, laying prone, and after 10min, she goes, “okay, I think we’re ready to try it!” And I get pretty excited, but I’m trying my best not to get my hopes up. So I work my way to the edge of the mat, and get prepared to transfer over into the Exo. Turns out this isn’t as simple as it looks! I can see now why they ask people how well they transfer, because if you can’t move yourself around well, you wouldn’t be able to get into the Exo by yourself! So I slowly but surely work my way over, and into the device. Boom. I’m in. So now we work on getting the shoes on, and all the straps on. As I’m looking at the device, I realize how serious this “thing” is. This isn’t a toy. It’s more complicated than a power tool. It’s in its own ballfield of devices, it’s very interesting. I am moving slowly and methodically because this device deserves a lot of respect, it’s very costly and I don’t want to mess up!
So after all the straps are on, they coach me through the standing sequence. First, you need to know where the crutches go, swing them around and behind you, and lean forward and press your weight into your feet! The motion wasn’t very simple, so it took a few tries to get comfortable! So, press the button till you hear a beep, swing the crutches around, and load your weight into your feet! So I do this, and the device starts to whirr, and it starts to move! But as quickly as it does, it sets me back down. Shoot. First try failed attempt. Adam grabs the smartphone to make some adjustments. He does that, and goes, “okay, try it again!” So, get the crutches around, and hit the button, and begin loading my feet. And that’s when it happens. My body starts to rise! It happened quicker than I thought, and before I know it, I’m instinctually trying to swing my crutches around to get my balance, which I’m able to! I’m up! I can’t believe it! I’m at standing height! This was so extremely good to finally be able to stand there at standing height, and gaze around the clinic for the first time like this! And my body was cooperating! I could feel how left up flexor was trying to resist, but fortunately I was all strapped in just right, and that wasn’t an issue. So then we start to do some weight shifts, leaning forward and back, side to side, and getting the feel for being up again! I was honestly so amazed that this has happened! I’m up!!
So then after being up for a little bit, they then proceed to tell me, “okay I think you’re ready for your first steps!” And in my head I’m just thinking, “okay wow here we go?!” And they then explain to me the weight shift sequence, where to load my left foot, and where to put the crutches. They tell me the right side will always initiate the step first. So I m getting myself ready to move forward, and I’m all locked and loaded. I hit the button, weight shift, and my right leg kicks out! And what feels like as soon as my right leg kicks out, I realize I need to now shift my weight over to my right, and get ready for my left to kick out! Turns out I wasn’t ready, my foot scuffed, and I stop. Turns out if the device senses any type of resistance, like from the shoe scuffing the floor, it will stop the device in the stand mode. So I get it ready, hit the button, shift the weight, and off I go again! Ashley this whole time is right behind me, helping me weight shift, in ways I don’t fully know quite yet. But I take off! And I make it down to the other end of the clinic! So we stop, turnaround, and take off again! I do this 3 times!!! This felt amazing! My legs were really moving! I was so happy that I was able to get and get moving on the first day!! This was so exciting!
My body really took to this quite well! As I’m in the standing frame right now after dinner, I’m noticing how much better my body is working to get my entire posterior chain working, and into extension!! Honestly I really could feel how the Rewalk was helping balance out my underactive left side and left glute!
It’s crazy because I’m completely exhausted. I’ve tried to read, and my mind is frazzled. It’s crazy sometimes how my body is able to deal with this all. All this stimulation.
So, here right now my legs feel so much more “fluid”. I was noticing up in the Exo, how much more fluid it felt and less jerky my body was! And I wasn’t being sucked at or into by the harness! Which is great! I’m noticing too, how my brain just wants to rest. I’m even noticing how I can’t even get any more words out for the night. It’s like 7:30, and I’m just ready for some rest!
9/4
Wow, this was pretty incredible! My legs have really been that much more fluid and engaged since getting out of the Exo! Especially my lower back and glutes! That was one of my main items of focus when I up and in it, making sure I could keep my hips forward. It was so interesting too, how much farther forward I actually thought I was leaning, but when they brought the mirror by, I was pretty much upright! Amazing! I’m going to be getting at it pretty early today, I’m excited so I better get a move on!
Wow. Just wow!! I did ~2200ft today in the Rewalk! This was amazing! Adam had told me how well I had done for my second day! I am really glad that he had said that to me, I was really excited to know it had turned around after my hamstring decided to be the largest menace at first. My hamstring was pulling so hard that I was pulling my foot out of the shoe while I was trying to step, this required some additional attention. Ashley got the theragun, and get my hamstring to finally cooperate!
9/5
Man oh man! The entire activation right now in my lower body is astounding! I’m just so shocked, with how quickly the device is helping my legs progress! I was looking at my Garmin watch yesterday too, and it was wild how the day I do the most walking, is also the day I go to bed with the most body battery?! Pretty amazing, really! My left hip and hamstring are definitely still being spicy, but I just have this feeling that’s going to start simmering down.
It was also funny, Adam goes, “you know some people end up naming their Rewalk” and what’s funny is I had thought about that. He goes on to say one persons named it after their recently deceased father, Larry. Another named it Regina, he doesn’t understand why for that one! Either way, folks name them, interestingly enough! What’s funny is I want to continue to use the device to help me regain my independence, regain normal walking function. How can it tie in to all the concepts I’ve been learning about? Would an acronym make more sense? Hmm. The Robotic Gait Trainer Device, hmm, Gait Assist Training… hmmm a name? I’m looking for a good acronym, the GOAT, or maybe a name? Hmm, any other farm animal acronym make sense? Gait On Assist Trainer? Exo, how does this pair in, I have a good vowel now? Gait Assist Rehab Exo Trainer?
Made it camping! It’s been a helluva week! I got up in the Rewalk 3 times this week! And honestly I’m pretty dang tired from all of this! I’m really excited to try my hand at some camping again, I just don’t know how this is going to go.
Made it, guys helped me with my tent and the setup. Makes me sad I can’t do that myself. I had some food before, and now everyone is relaxing and hanging around the fire. I haven’t been near a bonfire in a bit. I miss it. All these things I miss so much, but it’s not quite the same. It bums me out so much. I can’t throw a log in, or adjust the fire. I feel so helpless sometimes. Ugh. Well, I did make it out!
9/6
That was rough, I had a horrible nights sleep tossing and turning and being half on my sleeping pad. Great.
Wow, Laura’s and Paul’s birthday! And I’m laying in the tent! I really need to pee but I’m kinda rolled up and stuck at the moment, which is tough! I think if I try to roll the other way I can get unstuck? Maybe?
After many trials and errors, I eventually got myself sitting up, in a position comfortable enough to go to the bathroom. That was not easy. I’m now awake, and so I guess this is always a good time to do some writing. It’s 47 degrees outside right now, I put my hoodie back on. I’m trying to figure out how to move me again, into a more comfortable position when I need to.
Honestly, maybe I will continue to be leaned over onto my left hip a bit as I am right now. Maybe this will help me with my proprioception in my left hip and glute?
This is always so interesting, going back to places that you’ve always loved. I really missed camping, and seeing how difficult it is for me right now is a little bit discouraging. I mean, I guess I’m out here? There’s also that! The toughest part is just not getting sleep. That’s really hard. Laying there tossing and turning and falling off the air mattress isn’t exactly great. I’m looking around inside and around my tent. All the dirt, mud scrapings, clumps of Max’s hair. It’s all enough to make me miss it all. So much.
It was interesting, in The Body Keeps The Score, they talk about how Trauma is the disease that prevents you from living in the present moment. I’m really feeling that in these moments.
Not gonna lie, the perspective of looking at the low bushes underneath the taller maple and oak trees is an interesting perspective. I’ve also seen more caterpillars this morning than I usually do or remember seeing in the past. I saw 3 just on the walk from here to the Lake. It’s interesting to me, this perspective.
It was really interesting too, noticing how the ground felt under my knees when they would fall off and roll off the sleeping pad. Almost like they were getting more tactile feedback, because the earth is that much firmer than the beds I lay on? It was an interesting thing to note.
We went and tried our hand at some fishing. I threw some casts in, but it was super windy, and this didn’t seem like a great spot. Also my body was being way too temperamental, and I could stick around for long. The push back was a decent walk back.
Unfortunately I’ve been exhausted all day. I don’t think this is the weekend to try to push through the camping, and not get any rest. I was just up walking more than I had in the past who knows how long, and my body needs rest. So, unfortunately I told Ian I was going to have to cut out early for the weekend. I felt bad. It feels so bad to not be able to do the things you love, because your body absolutely sucks. I don’t want this to be the case forever, but right now I don’t think this is the weekend.
So I asked for some help to get packed up, and I head out for the weekend. Boy oh boy does all the sights out on the road really bring me back to all the times I’ve driven around across the state and the UP. I miss it all. So stinking much.
Wow.. how random is this…- Visit Random Lake, while the idea of activities being random was mentioned in chpt 19 of ‘The Body Keeps The Score’ and also while I was driving down South on 57 HWY at the exact same moment? Huh. Seems wild for that coincidence to have happened! I figured I would write it down. It’s so odd when things like that happen, who really ever knows why some of these coincidences happen! But that was a fun one!
Here we go, I need some rest. Made it home. I’m exhausted. Time to get some sleep.
The Astronaut on Earth 
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