8/10
when I went to the bathroom for the third time today, I got rather emotional because of the flood of thoughts running through my head. Max, Family, Julia, Callie, Mom, John, Jill, Schmüle, Jake, you name them. It’s always hard in these moments being seemingly removed from the family, but also right there with them. Watching life almost pass you by, from a seated position. It’s created this environment that I really have to be careful what thoughts pass through my head, to make sure nothing gets too negative or emotional. I acknowledge them, but try to move on.
So in the book, “Body Keeps The Trauma” we are listening to on the drive home, there was a line that really stuck with me. “My mother and father helped me with my resilience because of how she helped raise us before the age of 2.” [1] This is an extremely interesting fact. It made me start to tear up. That our parents have the ability to help shape us so much before we are even conscious? Pretty incredible, and also quite a bit of power. I had this thought and couldn’t help but say in my head, “thank you mom, for helping set me up for success” with a tear in my eye.
Got my camping gear! I’m really excited to finally get back out on a campground and campsite! It’s been too long, and I really need my body to cooperate! I’m going to have to start working on floor to wheelchair transfers without the bed nearby! Wish me luck!
Drove home and made it at 11:50pm, woof! What a long day! Miss the family Already. That’s okay though, we will be seeing them in about a month here in Milwaukee for Callie’s and my special day!! I am writing all this in the standing frame. I was able to get up in it as the last thing I do before bed! It feels great to finally get stretched out!
8/11
it’s 12:22am and for some reason I’m still awake. It’s interesting too, because my left hip felt like something deep in me is pulling my leg up, without my full awareness. It’s just off to the lower left of my abdomen, and it’s difficult to inhale so deeply when that part of me is turning on this way. It’s very deep, and temperamental. For some reason if I bias my weight to my left hip while supine, my hip spasms. when on the right hip, it’s not nearly as prevalent? It’s almost as if my hips rotated to my left are creating a situation where pressure is applied deep in my pelvis/ hip? Hmm more thoughts on this later!
As I wake, I seriously feel so much surging through my lower body! I’m always curious and wondering why my left hip area is as hyperactive as he is, and I try so much to remain calm, to calm that area down, but it’s not always so easy to do! It’s like that area has been taken over by my autonomic nervous system, when really he’s got other things to be worrying about, and he could let that area back to me for control?! who knows!
Time to get back in the groove after a busy weekend! I did get on the floor to move around this weekend! I did try to get up from the floor in a different way, and that was less than ideal of a time.
In the book I’m reading, “The Body Keeps The Score” he just got to the part about dealing with all this trauma, and how to better ourselves after these events. He goes on to say, “
- finding a way to become calm and focused
- learning to maintain that calm in response to images, thoughts, sounds, physical sensations that remind you of the past
- finding a way of being fully alive in the present and engaged with the people around you
- not having to keep secrets from yourself, including secrets about the ways that you have managed to survive.”
These goals are not steps to be achieved, one by one, in some fixed sequence. They overlap, and some may be more difficult than others, depending on individual circumstances” [1]
As I’m listening along, I think about what I’m working on, everyday. I know it’s not always easy for me to remain calm and focused in the middle of a relatively difficult physical maneuver I’m trying to complete. Like getting back in this chair from the floor without the help of either a ledge to push off, or someone else. In these moments it’s infuriating to me, to not have the physical ability to do something. It’s so hard. It makes me feel so small. But, I know if I keep at it, it won’t always be like this. I just need to be consistent and keep with it. I know o can continue to progress, if I let myself the chance to do so.
Today at PT went really well, if I’m being honest! I was able to get my body moving more easily in positions I don’t typically do, in a much more fluid way. It’s interesting to me because I don’t always have that. Honestly, a lot of days I’m just tight, and I don’t always understand why. I was in the standing frame for only 15min this weekend when we got home, but for some reason I’m not all tight? What is with that?
Today has been a long day.
8/12
What’s crazy is how much I’m feeling in my knees!!! My legs really feel like they are filling in, it’s honestly remarkable!! I can’t believe it all sometimes!!
I’m having a really interesting time right now trying to begin to describe how intense of new sensations I am having after this PT & OT session! I’m flabbergasted, it’s insane. It’s wild! The amount of activation, increase in proprioception, and awareness I’m feeling right now is amazing! I started off today at PT rather tight from dehydration, and general fatigue from such a long day yesterday, goodness that was a long one. I hope and feel like I’m getting better at picking up on my sensations, because when I’m hungry, tired, need to use the facilities, or thirsty, I’m getting better and better at not only noticing these feelings, but acting on them.
Maybe all this has to do with the fact I have my body some “rest” and recharge, over the weekend because I wasn’t doing such intense physical therapy? Seems like that may have done it?
8/13
Is it pretty wild!? My body is feeling so engaged! My right leg! my right leg is feeling so much more and my low abdomen and hip flexors are seriously engaging so much. My feet are pushing through my feet a ton. My left leg feels like it’s catching up. This is just my entire lower bodies really waking up Yesterday. PT was a great day and I actually got decent rest last night too. I was absolutely 100% exhausted I’m not even sure how I was able to get that tired but I was now I just need to keep up this momentum. I really like all the stuff that Danica and I have been doing and it’s interesting too, all this work, trying to get myself up off the floor is really waking my legs up! I know it’s a decent amount of upper body work, but my legs have to be engaged this entire time too, and this was probably one of the first days that I had gone on the treadmill first and then got on the floor, so maybe that had something to do with it? But it was really good! This last night‘s rest because my legs actually stayed in extension a decent amount, both my knees and my hips! which is amazing. It’s really interesting too how different with my hips and low abs feel! maybe all that Bosu ball work is really really kicking in! Danica had me doing this our movement with the pole and weight that was sliding back-and-forth as I lifted and lowered my left and right hand simultaneously and then she had me start rowing, which is just like what I do with Pilates! And Danica said, and I quote, “Therese would be proud!” It was really really awesome doing the leg abducting! My legs were really picking up. I really feel like there’s something to getting my body and my legs to fire more and more in this sequential order because getting my legs to stabilize and and abduct in supine, as well as in a prone position too, with fire hydrants has really been helping my legs! Even my feet are kicking in and lower legs are kicking in when I’m doing this and the sensation throughout my legs right now is substantial! So all this work really has to be making a difference! This all kind of started with being able to get myself onto the ground and I guess that’s where it all starts. Starts with being able to get yourself down on the ground just like an infant. It was really cool this weekend watching Julia move around and get her legs in a wind spread position! I know that that movement is good for our hips!
Wow! I was just up in the standing frame for the last two hours! That was intense!
Sigh. I like, don’t even know why I do it, sometimes. I don’t understand why I put myself through it. Simultaneously I see things that I know and like, and want. Then also see things that make me reminisce, and well, kinda get sad. No one knows these internal struggles and trials I have to be put through, every single day. No one understands all the small, subtle flickers, and increases in sensation and activation. I’m not complaining, it’s just hard. I don’t like to compare, and I don’t know where I’m going, except trying each and every day to strengthen my body, and reconnect with my core, legs and feet. It’s so odd, to feel this removed from society, while simultaneously having so much hope and desire to change and make new. I know my body is capable, it’s making progress every day! It’s just so hard to have to see what once was, and be reminded of what I don’t have right now at this very moment.
So, what do I have at this very moment though? A woman who loves me more than I’ve ever thought possible. Someone who’s sticking by my side, through some very tough and trying times. I still have a lot, a loving family, and a roof over my head. It’s also interesting too, how this doesn’t even work sometimes to cheer me up. There’s so much comparison that goes on in this world, and I can’t seem to escape it. It may seem sad right now, and I’m probably really tired too, who knows exactly. But I try to remember these great aspects of my life. Even just a glimmer there sometimes does help.
Holy smokes! Made it to the gym! Did some cardio! And some weights! It’s been a minute since I got my heart rate up! It felt great!! I do sometimes miss coming to the gym, but it really makes my hamstrings so tight! I guess that’s why I replaced the gym with so much floor time!
Turns out, cardio is wayy more important for me than I ever even thought! And heart rate variability (HRV) is also way more important than I ever even knew! This is why when I was up in the standing frame, my watch registered my body in a state of “rest” because my heart rate variability increased so much! This is such an interesting fact to have observed and learned!
8/14
What’s crazy, is getting so disengaged and distracted with “normal” day to day life, I will call it,
It happened again! My stress levels dropped and it was recognized as rest when I was up in the standing frame!!
I had a pretty exhausting day today, time to get some early rest!
8/15
Um, idk what happened last night?! My gut and GI tract has to be making some significant changes! Not only that, but my legs and abdomen this morning feels so much more real! There is this huge surge, and “awakeness” I’m feeling in my legs that’s so significant! More on sensations in a bit, I need to describe what happened last night, it wasn’t exactly pleasant!
So, when I laid down, I know I was having some bloating and gas. I couldn’t get it out. But somehow I still was able to fall asleep? So I wake up at midnight, trying to force myself to burp and get this gas out, and it was some of the most intense discomfort that I’ve felt in such a long time. My body doesn’t usually do this to me anymore, and I wasn’t exactly sure what hit me. So Callie gets up and helps me out of bed, I got to the bathroom, that doesn’t help. I come back to bed, moaning and groaning, and Callie helps me with some heartburn medicine. It was so odd, and so unpleasant. I laid myself back, and when I got stretched out like this, it felt hard to even breathe. And that’s when Callie says to me, and asks me to calm down. it was so hard to in that moment, but I tried. I did. I slow the breath through my nose, and I am able to finally start to relax. I don’t know if I’ve ever held Callie so tight as we fell asleep as I had last night, my arms wrapped around her, with her hands in mine. Her hands and mine so intertwined. I finally managed some rest.
I woke up this morning with an intense amount of sensations in my knees, shins and calves, ankles, and dorsiflexors on my feet! As well as on my soles and heels! This is so interesting! Each morning I feel like an artist slowly making brush strokes on my body, filling them in, piece by piece, layer by layer. My upper thighs are activating so well! As is my low back! My glutes aren’t sleepy in my left side!
Now to capitalize on this! What can I do today with all the new activation? Maybe something at Pilates? Let’s see how today goes!
It’s so interesting, I really needed some rest last night. It’s so interesting how I’m able to really push my body to the extremes of the day, and try to squeeze every last bit out of him. My body and mind are really trying to communicate better than ever together. Every day and night I’m hard at work at reconnecting. Even in my sleep, my body and mind are hard at work repairing all the connections that have been worked on during the day!
It was interesting to me to learn about HRV heart rate variability, as well as how cardio affects our body as well. Turns out after a Spinal Cord Injury, it’s actually really hard to vary your heart rate, which is an indicator of your autonomic nervous system health, for both your sympathetic, and parasympathetic nervous systems. I know my parasympathetic nervous system really needs some help. Which is why I’ve been trying to get to the gym more regularly to hit the heavy bag! It’s so interesting, learning so much about the human body, and then having a body to directly apply all this learned knowledge on. I’m glad I am able to learn these ideas, and so readily apply them!
I’m trying. It’s been a long day. It’s not always as pleasant as I want. There’s some moments that are so hard, and they may seem so wildly mundane, but they’re so hard for me. My body. He’s trying. My mind. He’s trying to. I don’t always get the communication right between them, and I know how hard it is on those around me. I don’t always know how to verbalize and vocalize it, but I try. Like right now. Trying to get my hip flexor to relax. It’s so interesting, it’s almost like there are different parts of my brain trying to communicate with my legs, hence the errant signals to them? I’m curious, about why my hip is the way it is?
8/16
This is substantial, each standing frame session, each time I’m moving my legs, be it at home, PT, Pilates, or micro movements throughout the day, my legs are changing. I woke up just now, to the sensation, “wow, in between my toes feels wild” all of a sudden? Like what? My knees feel tight and want to move, my right quad is especially tight, and wants to get moving! Shoot, even my feet feel like they are cool, wet, and also tingly, with my toes also feeling a significant amount into the knuckles. my ankles feel tight, and when I try to put my foot in plantar and dorsi-flexion, I feel the muscles in my shin and calf (on my left side more than the right) activating and trying to do something??! It’s so interesting to me, because I know my body needs a lot of rest and recovery, I did this yesterday, got some extra rest, and when I woke up from that nap, my legs even felt different!?
From Aug 7th from Callie, “Recognize what you are actually feeling, don’t tell yourself what you think you should be feeling. You Have to relearn the nuances of the different feelings. For example, not every sensation in your lower adomen means you have to pee.” THIS IS IT! This is how my mornings go! But then I wake up, and then the whole day gets in front of me, and I try to force what it is I’m trying to feel. I almost need to try to paint on a blank paper, the sensations and areas I’m trying to feel? I could almost use different colors, to try to describe different feelings?
Almost like this image? And then I can color in different areas? I’m going to try this today, and see how this goes! I am not sure what this is for, or how it will be useful, but it seems to be calling to me, for some reason?
Alright. Well now. So, I learned that and finally figured out to wear a life jacket in the pool…. I know I know, why wasn’t I wearing one before? Well, to be honest, I never really thought about it? And didn’t get prompted either! I guess this was extremely silly of me, to have forgotten and not tried to wear one before! But before the storm, I got in for maybe 15 minutes! And I was moving around so freely on my own! I may not be moving the best, but it’s a start! Tomorrow if the weather is good, I’m going to have to try this again!! Pretty busy day, trying to buy a house is really interesting! Callie and I had a busy couple days here!
So, up in the standing frame, and trying to get my body all worked out and ready to get a good nights rest. I’m always trying to make sure I get enough movement throughout the day. Little by little I’m standing longer and longer in the standing frame! My lower abdomen today was acting so wild! It’s really waking up!! And it’s been extremely uncomfortable too! Not going to lie.. but he’s really been trying these past couple days, it’s made for some extreme abdominal pain, but I know that’s a sign that something is changing in me! I just need to let myself feel what I’m going to feel, and recognize what it is.
This week really has been that, “Recognize what you are actually feeling, don’t tell yourself what you think you should be feeling.” And trying to slow myself down, and let this process happen. It’s been hard, because I can get so impatient with my body and my recovery, but when I give myself a chance to actually slow down, close my eyes, and feel what I’m actually feeling, I’ve been noticing some remarkable changes. One day at a time, and I’m feeling my legs waking up underneath me.
The Astronaut on Earth 
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