3/31
Easter! Wow! Had to get up and get ready to go to church with mom and dad! We had a pretty alright time, really. It was an interesting time because I had to take a break and do my business in a public facility.. but public bathrooms are usually pretty good, and this was definitely the case here! Haha. Eloise showed us around the school and where her classroom was, and I had her sit in my lap and we went for a stroll down the hallways. It’s kinda funny because I can really get moving in the chair, and the kids really have a good time with it! So I know at least they are having some fun.
So when we got back home, my dad was very excited to have a drink, and it seemed like it was about noon, and he’s already asking, “who wants a drink?” So I decided to fire up my Old Fashioned making skills, and I became bartender for the day! It was great to see everyone enjoying their drinks! I made quite a few different ones, and everyone really liked it! I’ve had a bit of a change in my relationship with alcohol these days, you could say.
So when John and Jill got there, I decided to get things going and get myself ready to get up in the braces. I have been practicing putting my braces on by myself, and when I was, Jake walked up to me, and asked me how he could lend a hand. It’s pretty special in those moments, when one of my brothers asks me if they can help. I really appreciate it. So I let him know where the straps are, and he gets right to it! The legs can only go in the KAFO’s in so many different ways.
After I get the braces on, my brothers were all around me, and dad walked up, and it was cool hearing him tell Paul where to hold and support the walker when I get up. Everyone has a place, and a job to do! So Jake signed up to help me behind the braces, Paul at the front of the Walker, and John was pulling up the rear by walking with the wheelchair on Stand-by, in case i needed a break or I loose my footing.
I tell them where I would appreciate everyone to be, and then I do a practice stand! And so I get up, and start to shimmy around, and ask them to help me get a bit of a bigger stretch in, to help me loosen up before I get out the door. So I wiggle back and forth, push forward and back, and wiggle all around in the hips. It feels good being up on my feet, and this walker is helpful because I can support my forearms on it, as opposed to holding my entire body with my hands. It takes a lot of load off the wrists.
The brothers help me out the front door, and over the threshold, and get into position! So I explain to them I want to do the whole thing without sitting down, but I still might need a break, and I’ll just rest on my forearms in place!
So we get moving! Everyone was there and I just thought about the couple things I needed to focus on. Hiking my hips, squeezing my glutes, and looking up! I am trying to focus so much on looking up, and not always having to look down at my feet, it’s really hard to do!
So when I get moving, I realize, I’m able to clear my left foot on the concrete so well! My right foot still needs some help, and Jake gently helps lift my right leg to allow me to try and do as much work as possible. And I’m moving! I can hear the words of encouragement from Paul, John, and Jake. they’re right there with me. It feels pretty dang good.
So I get maybe 40-50ft in, and I realize I’m doing this!!! it was wild and hard to believe, but I wasn’t going to stop! I realize too, I have a turn I need to make, and I slowly start to readjust the walker, and kick my legs in that direction, and they actually do! They are moving the way I tell them!
I keep going, and I can slowly feel the weight thru my feet grow, and I am trusting them more and more. This really helps allow me to put more pressure in them!
We get to the big door, and my dad yells, “wow I didn’t think you were gonna make it there that fast!” And I continue to go to the side door, and I wanted to touch it, at the edge of the concrete, and turn around! By this point I’m getting a bit fatigued, but I want to keep moving!
So I am able to spin myself around, and get ready to go back to the house!! Everyone was standing around, congratulating me, and I meanwhile am in my head telling myself, “keep going! You gotta make it back now!” So I make it another 20ft, and I take my first break! I rest for a moment, and collect myself, and I tell myself that if I’m gonna be walking, you gotta be able to walk further than this, so I keep going! So I was able to make it right to where I started, and I stop, John pulls up the wheelchair, and I slowly lower myself to plop in! I take a quick rest, and the guys say, “keep going!” And so I get all excited, and we spin around!
I make in all the way down the sidewalk to the larger concrete pad, and my legs didn’t want to go any further. So I tell the guys I’m pooped. And I need a rest. They grab the wheelchair for me, and help me get back in. It was really interesting too, because this was the loosest my legs have ever felt, and they weren’t buzzing and all tingly! They were just tired legs! It felt so good!
I ask the fellas if they can pace off how far I went, and Paul steps off to get the distance, and we realize that to the barn and back, and the extra distance I did, I got 300ft!!! I was so ecstatic! That was absolutely incredible! It was pretty amazing to feel my legs so peaceful, and soooo tired! It was amazing. I really didn’t think until I got moving that I was going to walk that far!
By taking the first steps towards this, I didn’t even know how far I could go until I actually tried. It was phenomenal! I was really proud of myself, and it was crazy to see everyone around me cheering me on! It felt really good to see all the support that I have around me, and all the help I have.
It was interesting too, because I tried to stand up in the braces without them locked out in the knees! It went pretty okay, all things considered! My legs didn’t spasm, and my legs stayed under me! They didn’t push up so much that I didn’t have to let go of my hands, but still! It was a start!
So after I was standing there for a little bit without braces locked, I was able to complete a couple steps! Without the braces locked! It was really tiring, but I still was able to do a few! Just baby steps, that’s all I’m trying to do! This was a great way to start the day, and I worked up quite the appetite, so I was excited to eat!
We Joked about instant ramifications, and some other silly ideas, it’s always fun to be able to have conversations with the family. It’s always a fun time!
Callie and mom did dishes after everyone left, and it was really cool too, they both had a bowl of ice cream that dad scooped for them! It was a pretty nice moment.
Went to bed, and had a pretty great day. I can’t even ask too much for better days than that.
4/1
Well, getting packed up to leave! I’m sitting in the house right now, and I have to wait to be lowered down to the first floor. I should say that it’s an interesting feeling, not being able to help pack up and load up the car. But it’s nice to know at least that I have so many kind people willing to help! It was really an interesting time, a time to reflect and think about all the time that mom and I had spent with one another here in this very room. It was a pretty special thing to realize, how much she helped me with over these past months. I really can’t ever forget that.
I’m always sad to leave, but this time I didn’t want to do that. I said to my mom, “instead of saying bye, we need to be saying, “looking forward to seeing you soon!”” Instead of having to be dreading when people leave. I know that this time around, we just need to plan the next times that everyone is going to visit! She liked the sounds of that, and we had made plans for the next visit!
Back on the road, and getting ready to get back to my schedule. It’s been a long trip to get me all thrown off, but it’s usually always worth being able to see the family.
Okay, so If there was any gas station floor to fall on, make sure it’s a Love’s. That could have been horrific and disastrous!
I definitely had quite the experience having to call Callie, and try to pick myself up off the floor of the bathroom. Thank goodness that it was clean in there, because I really needed some help, and if it was a giant mess, this could have been so much worse.
I really didn’t expect this to happen, I was ready to hop on the toilet, and then I think my wheelchair started to slip out, and BOOM. Down goes Joe…. It wasn’t such a great time, if I’m being honest.
Fortunately when I went down, I had plenty of grasping surfaces. But I was worried about my ankles. Since I can’t hardly feel them, I was really concerned that I could do more damage than I could feel. It was a pretty unsettling feeling, to be thinking. To think that if something happened to my legs that I might potentially not really feel it has me feeling pretty sad to think as well.
I was able to pull myself up for the most part, but I couldn’t get into the chair. Thank god for Callie! If she didn’t come crawling under the stall door that was locked, that I couldn’t reach, I would have had to get help elsewhere, and that would have really sucked. She came slipping in under the door, and thankfully she helped me in! I was able to get on and do my business!
Okay, so as soon as I thought it good go wrong, I realized something when I was finishing up….. there was no toilet paper……. Sooo at least I wasn’t on the floor! In comes Callie to save the day again!!! I am pretty dang thankful for her. That was pretty incredible of her to do.
After I was up though, I fortunately was able to laugh afterwards! And then I got a Corndog. That made me smile, I’m really happy for Corndogs. and Callie. Callie and Corndogs are good ways to make me smile.
4/2
Standing frame, DSS E-Stim, and doubling up on all the things! There’s a lot to keep track of these days, and it’s always so hard to slow down and keep it all straight! I need to work on rolling my abs out when I’m in the standing frame, to make sure I really get the most out of my time spent here! I need to look up if the placement can be modified a bit to help differing parts of my legs!
I can honestly feel so much thru my lower half right now! Everything feels so engaged! My calves a little less so, but I’m really feeling the weight thru my feet right now as well! My left leg is being a little troublesome with how my hamstring pulls my foot up, but I’m working on getting him loosened!
Like Rose said, muscle tone, tone pattern, involuntary motion, and then learning to control that motion to voluntary motion. That’s what I’m working on controlling for all these muscle spasms and areas of my body that are misbehaving.
I definitely am feeling so much more in my butt! Callie just slapped the table to kill a fly, and it made me startled, and I could feel my lower body tense up!!
4/3
Okay so I don’t think that getting 6 hours and 15 minutes of sleep is enough to get to the gym at 6:15 in the morning. And this wasn’t due to the fact that I went to bed late!
I ended up having to get up at 2 o’clock to wake up to some excruciating pain in my abdomen. And I could tell that it could be only one of two things…… that I really had to go…. And I didn’t want to either, that was the thing. I didn’t want to get up just to pee a lil bit when I know my body can support so much more. But like Callie was saying to me yesterday when we were talking about this, “it’s all about time management, if you can check off the things that take less time, you can come back to the things that take longer.” Especially if they are basic bodily functions, cuz once it gets bad, everything is going to take longer anyways because your tight and sore and don’t want to move!
Which, is true when I think about this. It happened yesterday too, where I didn’t want to get up from the table to go to the bathroom, and I realized that this is a silly and also stubborn thing to do. I’m talking about it now and I realize how silly this is, but in those moments, it’s so hard to get myself out of that mindset. I’ll slowly start working on that and chipping away at it.
I’m laying with my feet dangling off the bed to get a quick hip stretch in. Honestly, I’m thinking about the feeling of my legs, and I really am feeling all the activation going on in them! They are able to do so much more!
Thinking about how hard it is to talk about what happened. Like, I’m having struggles because of not being able to talk about this. What on earth does that even mean. It’s pretty hard to go thru life without being able to talk about it all, so I’m gonna have to work on this.
Using the Swiss stim up in the standing frame, and I have it turned up to 18% and im really feeling my quads engage, my glutes engage, and the rest of my legs down there! It’s really interesting to feel right now.
4/4
IM FEELING IT IN MY ANKLES!!!! It’s crazy how different mornings produce different sensations! I have no idea why it’s like this, except that my body needs time to heal. Time and repetition. It’s hard to do it all, sometimes. But I just need to slow down!
4/5
Okay, so when I’ve been waking up, I feel when I have to go, and usually it’s a pretty intense feeling, but it’s changing. It’s not just immense pain. I know that I’m experiencing so many changes down there, especially after using the e-Stim, but I don’t quite know what the changes are, exactly. It’s hard to get a wrangle on all of them sometimes.
I definitely have a feeling of needing to go, and it’s not so intense that I’m in excruciating pain and my body is going to rip itself apart until I can go. Trying to take a step back as a casual observer, I see that these are definitely my bowels and my bladder “trying” to communicate, they are just not getting their signals thru to my brain quite so easily just yet.
My ankles definitely are getting some feeling back! And the pins and needles in my feet and toes is changing drastically! There’s less and less of a huge change in pins and needles, and more of a weird feeling and flush of temperature as well. My big toes and pinkie toes are really feeling something different. I can really feel them feel different when I try to wiggle them!
Okay that was pretty quick, I’m not gonna lie! It took me 8min to get fully dressed! I did have all the clothes laid out and on my side ready to grab, so that was a bit of a qualifier, but I figure I need to set a baseline with at least something? I figured that was fair? Either way, it felt good to know that I could get ready in such a reasonable time!
I’m in the standing frame, and I feel so many sensations throughout my body. Different pulses thru my feet, and when I’m trying to wiggle my toes, I can feel a change in my feet! I really feel the tightness in my abdomen, and I’m trying to figure out if it’s my hip flexors, obliques, or where I’m getting the spasms from.
It’s interesting how I feel like the longer I am in the standing frame, the easier it gets sometimes. I really do recognize when I’m in the chair, the longer I am there, the harder it is to move.
I helped change a spare tire!!! That was a bit of a hectic time! Callie hadn’t ever changed a spare, and I wouldn’t have had a problem at all doing this by myself, but right now, I realized that I needed some help, so this was definitely a “two-fer” helping Callie learn to change the spare, and then trying to do more and more everyday!
We pulled into the gas station, and I was all bummed at first cuz I really wanted to eat these French fries! I really had a craving for them, and wanted to eat them while it was still hot! So I shoved a mouthful into my mouth, and get ready to do a little work!
It was fun, because I was able to help explain a lot of this to Callie, who had never done this before! I also had a tool bag in three back of the car, so I was all ready and set to go! Unfortunately, I wasn’t able to break the lug nuts loose with the impact. Dangit. So, I told Callie, “okay, get up here, you gotta stand on it!” And she looked so surprised!
We ended up doing it in record time, at least for a guy in a wheelchair, and a lady who had never done it before! It took us about 30min, no tears shed, and the fries were still warm! That was a win win!!
4/6
Goodness gracious. My hamstrings need to relax. They need to chill the heck out. The co-contractions of my hamstrings when I’m using my quads is getting a little out of hand. I need them to play nice and relax a little bit. I know they want to help, but when I’m transferring and need to move my body backwards and contract my quads, and put my knee in extension, he kinda needs to chill out. I almost lost it on my way to the toilet, it was kinda disastrous. I’m not sure what I need to do to try and get these co-contractions to not be so rough, but that’s one thing I need to spend some time on.
Oof, Callie and I went and grabbed the tire from the tire shop, and I just have this giant feeling of chilliness right now. It’s really hard to keep focus on what I’m doing in these situations, when my body is just not feeling right at all. I hate this.
What’s interesting too, is how feelings can linger around for a bit after I have them. Like when I have the urge “to go” the feeling can sometimes linger around much longer than what you might expect. I really am not sure what that part of the sensation means, but I’d like to figure out how to help them not be like that so much. Like, I’m all done going. I don’t have to still feel like I still have to go. It gets kind of annoying when that happens, I wish it wasn’t the case. But! I am still feeling when I have to! Time to make sure I do the e-Stim today!
You know, living life’s experiences in this chair has some really big ups and downs. The things that you wouldn’t think bother you, end up causing some of the worst grief ever. The situations, people you see, and the events for which a mundane task takes place in, really ends up making a very interesting time, and how you think about the world we live in. It really makes me feel out of place.
Take for instance, the movie we went to go see today. I didn’t go to the movie planning on having a bad time, but with everything that I’m feeling and experiencing, I end up having a pretty not great time in the moment. My body tenses up, I can’t move my legs right, my abdomen is tight, my butt is sore, I want to wiggle my toes, and the list kinda grows from there. I get done with the movie, and a slight inconvenience throws me off so bad, you would have thought that you were never going to get to go to Pizza Hut in 6th grade because you finally got a few A’s. It wasn’t the worst time ever, but you get the picture.
It was still a good time, I’m glad we got to go to the movies and do a nice hangout! It was just thinking about all these things that can get me pretty overwhelmed. Life’s hard, there’s a lot I have to manage. I’m still glad and pretty dang thankful for all that I can do, and that list is growing every day! I’m really thankful for that.
The Astronaut on Earth 
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