Dec 17th
Yep, there is a lot going on.
Butt, legs, left ankle! Holy smokes the feeling of a deep burning is there
How can I improve the signal from my brain and my legs?
This is the real question I’m asking and working on!
Dec 18th
How do you think of help differently?
If you think of it as an act of someone reaching out, to extend a helping hand, instead of it as a moment of weakness, youre gonna think of it totally differently.
You do need help. And you are working everyday towards getting your legs back!
What’s crazy is falling asleep in less than a minute…. My body really does respond to needing quite a bit of rest, and laying down to get off my bum and pressure relieve off my back is really nice.
I do get kinda demotivated when I’m laying like that, cuz it makes me feel unproductive. But that’s not how I should be looking at it. Rest is critical, you are doing a lot! Don’t think of it as “giving up” cuz I know that you’ll wake up feeling refreshed and ready to hit it.
Just taking time to collect my thoughts right now has wildly impactful benefits. Slowing my mind down, breathing, feeling my body, are all aspects of rest that are hugely beneficial to me. Evan worded it quite well, “Extreme Mindfulness”. Which, is kinda what is happening when I do that.
It’s really cool that my therapists are really helping me get setup and are excited for the Stim Unit, so this is gonna be a fun thing to experiment with!
Dec 19th
PNF exercises
What’s wild, is taking time to do some CAD work for the tops for the kids Christmas gifts. John had a wonderful idea of making the kids some tops! So him and I went back and forth all morning, with probably 8 different designs and iterations of the top!
Him and I discussed the weight, how it should feel in the hands, what material to use, and then about all the radii that need to be blended to get it all just right! We settled on a design, and I sent him the first drawing I had made in close to 6 months!
Really, this was all John’s idea, to make the tops! I was just glad to be useful!
Dec 20th
So like, this is a wild time. Applied to two clinical trials…. Let’s see….
What devices can I make to get my legs moving? How do you want to assist in moving them? Like, if you can help do walking/ gait movements on your own, that has the potential to be able to help you do that while laying in bed?
So the powder board movements, paired with the braces? Scratch, honestly you just need a cable system and slings to then get your legs to be able to be moved. Back and forth, to stimulate your hips, glutes, quads, and hammy…
Dec 22nd
So it’s really an interesting time, I need to leave to go back to Michigan tomorrow, I’m not thoroughly excited at the moment. To try and get thru the Chicago Central train station in a wheelchair, and having a spinal cord injury just 6 months ago, by myself, seems like a really daunting task. But I gotta do it! I gotta see my family for Christmas!
What’s been crazy is that the NMES is really helping me strengthen my legs! I need to never disassociate my legs from myself, I need to always talk about my legs that way. That’s a great thing to talk to Callie about too. Talk to me about what needs to be done with my legs.
I really need to activate and work on the muscles in the gait cycle. When I’m trying to walk and stand, I get mildly confused, and I don’t want that AT ALL
I can’t help but think about the interconnectedness that we all have with one another. I’m not here for myself.
Dec 23rd
Wow, the train station is wild right now. There is like a group of 25ish immigrants with white plastic bags, as their only belongings. It looks like maybe 4 families? Some do and do not have warm clothes, very few with actual jackets, it’s very interesting.
It doesn’t look like all of them have cell phones, and quite a few have very small children with them too.
I think they are waiting for a ride, as I’m waiting for someone to get to the red cap station… this is really annoying…
Okay scratch that, there’s a lot with cell phones….
Still no sign of a red cap…
Wow, so it’s wild. To be able to review, think, and feel everything that I am right now is incredible. My body is able to relax, and I’m able to control the tingles. I have to really try. To really be engaged.
If I can control my spasms, that’s the first step towards volutional control. Like, if I can stop the errant movements, and I can control the “tone”, this is all how you get voluntary movement back. That’s what it is, “voluntary” so, what’s the difference between that and moving before?
Damn. Reading this book was wild. I went from hating this guy to then at the end realizing that was he was saying made sense. I was angry at first because he was repeating things that I’m already thinking. It wasn’t anything “New” or crazy. Like, I wanted to know what this was like.
But what really hit me was when he said if all these famous people are saying the same things, that probably means that this is probably true. Like, what wouldn’t you have to see to believe it? So I really took this to heart. And I have really thought this about my recovery. Like, he’s saying things I’ve been thinking since I was in the hospital, and I am not going to stop thinking of saying these things!
Everyone’s journey is very different and he was right. No matter how anyone is gonna try to spin a message that someone else says, it’s always going to come out sounding like our own.
So, he’s right. Damn. And it made me realize something. I’m doing it. I’m really freaking doing it.
I’m going to get back walking. I’m actively working on this! And you know what, this is MY journey. It’s really freakin hard, every single day. Seeing all the people around me move their legs, even when they are seated, doing the most mundane things, makes me appreciate all those slight movements that none of us are even thinking about.
Like, what I’m doing is really taking information from so many different sources, applying it, and trying so much to achieve what the doctors said is only for the 5%.
Even with that last doctor’s visit, my odds sky rocketing up to 70% I think?
I cannot stop, this is truly the most difficult thing I’m ever going to have to do, and it’s not going to get easier, knowing that.
Like, thinking about my legs, constantly, trying to move my legs, my toes, my parts that are hard to feel. Trying to make sure I use my words to accurately describe what is happening, and taking notes on this all, truly does help me understand what is going on significantly better. It does help me understand what is going on!
Taking daily notes has been one of the most important things I can be doing.
Learn to ask the right questions!
So, this book has been really interesting to finish, and complete. I really do see that everything I’m going thru, all the feelings I’m feeling and COMING BACK, all these really hard life lessons, and this amazing relationship that I’ve been forging with Callie has been truly amazing.
What’s wild to think is our relationship wouldn’t be what it is today without all this time to think and critically analyze what has been happening. This really has forced me to grow. So. Flippin’ . Much. Like I’ve said before, my brain has never been in such a good mental state as it is today. This is just a hard thing to accept, with my body in the shape that it is in today at this very moment.
To think about never wanting this to have happened, and then to think about being thankful for this to have happened has got to be one of the biggest mind games of all time.
I’m really working thru this, knowing that this is something that truly is remarkable to be going thru and experiencing. The people I’ve met, the lessons I’ve learned, the limits I’ve been able to learn about myself, has really been an amazing process.
I AM GOING TO BE WALKING AGAIN
I AM GOING TO BE WALKING AGAIN
IM GONNA BE WALKING AGAIN
I have to. I seriously have to.
The Astronaut on Earth 
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