Imagine life as a newborn. In the beginning they cannot lift their heads, they cannot move on their own, and they fully rely on someone to help them. Now picture someone who is 14 years old struggling with the exact same things.
Therapy was not just physically exhausting it was also very mentally exhausting. I had to relearn everything that I already knew how to do. The simplest things were no longer simple, they were just the opposite. All of my muscles from the top of my rib cage down were paralyzed. The only fully functioning part of my body were my arms and head, and even then they didn’t know how to compensate for the rest of my body. Therapy started out very slow. I literally could not even lift my head up off of my bed or a table. I had to learn how to roll from my stomach to my back.
**I remember there was a night during my hospital stay that I wanted to sleep on my stomach instead of the usual back position. So I called the nurses and had her flip me over and that’s how I slept. I also remember waking up in the middle of the night stuck on my stomach and not being able to roll back over. I had to call the nurse back to my room to just simply roll me back over so I could go back to sleep.**
I mean, that’s the simplest thing right? Rolling over. It is so crazy how something that seems so simple takes so many muscles you didn’t even know you needed to use to do that. Another simple thing I had to learn how to do again was to clap. Yes, I could not sit and lift my hands up in the air to clap. I had no ab control. -- Do it right now, sit on the side of the couch, bed, chair, and clap. So simple. Did you just use your abs to clap? No? Wrong, you did. But you don’t realize you did. I had to learn how to balance myself enough to lift my hands up. I still to this day cannot lift my hands above my head unless my back is supported. It’s not because my arms aren’t strong enough, it’s because my body physically cannot use the muscles needed to help my arms go up. It’s a lot to comprehend.
Anyways, therapy was a day to day thing. You see, I hated therapy. I hated feeling like I needed help. I hated not being able to do things I already once knew how to do. I felt like I was trapped inside someone else's body that just would not move. The brain is a wild thing. I have all of these memories of being able to move when I wanted to, or to just move without thinking you know? That's how simple it is, you don’t even have to think about your next move because your brain has already thought about it for you. Walking is effortless, clapping is effortless, crawling is effortless, eating is effortless, being... able-bodied..... WAS...... effortless. Being paralyzed was everything BUT effortless. It was exhausting. I had to think about how I could use my body as leverage to balance out this side of myself so I could do something with the other side; or how if I leaned a little this way it gave me enough momentum to shift that way. I had to figure out how to dress my self again. I quickly learned that things don’t fit the same sitting down as they do standing. I know everyone knows what I’m talking about. Things seem to be maybe a little tighter, or crinkled. ((I always joke now when I’m shopping and find something I like but know I can’t wear because “that’s a standing or walking shirt” haha. )) It was just yet another challenge that came with the diagnosis. I used to have this saying “if you made me cry during a therapy session then you are doing your job well”. If therapy was challenging, I would typically get so frustrated I would cry while working out. It wasn’t that I was upset in a sad way, it was just me letting go of my anger at the fact I couldn’t do something. Well I wouldn’t say COULDN’T... I just had to figure out an alternative way to do it. I had such a love hate relationship with therapy. Looking back now I think it was just hard for me to accept the fact that I will always need help with something. I can live life very independently but asking for help is something I will need to do from time to time and that's okay. And I needed to learn that! THAT IT’S OKAY. ‘Help’ doesn’t make me any less of a person.
Therapy was not just physically exhausting it was also very mentally exhausting. I had to relearn everything that I already knew how to do. The simplest things were no longer simple, they were just the opposite. All of my muscles from the top of my rib cage down were paralyzed. The only fully functioning part of my body were my arms and head, and even then they didn’t know how to compensate for the rest of my body. Therapy started out very slow. I literally could not even lift my head up off of my bed or a table. I had to learn how to roll from my stomach to my back.
**I remember there was a night during my hospital stay that I wanted to sleep on my stomach instead of the usual back position. So I called the nurses and had her flip me over and that’s how I slept. I also remember waking up in the middle of the night stuck on my stomach and not being able to roll back over. I had to call the nurse back to my room to just simply roll me back over so I could go back to sleep.**
I mean, that’s the simplest thing right? Rolling over. It is so crazy how something that seems so simple takes so many muscles you didn’t even know you needed to use to do that. Another simple thing I had to learn how to do again was to clap. Yes, I could not sit and lift my hands up in the air to clap. I had no ab control. -- Do it right now, sit on the side of the couch, bed, chair, and clap. So simple. Did you just use your abs to clap? No? Wrong, you did. But you don’t realize you did. I had to learn how to balance myself enough to lift my hands up. I still to this day cannot lift my hands above my head unless my back is supported. It’s not because my arms aren’t strong enough, it’s because my body physically cannot use the muscles needed to help my arms go up. It’s a lot to comprehend.
Anyways, therapy was a day to day thing. You see, I hated therapy. I hated feeling like I needed help. I hated not being able to do things I already once knew how to do. I felt like I was trapped inside someone else's body that just would not move. The brain is a wild thing. I have all of these memories of being able to move when I wanted to, or to just move without thinking you know? That's how simple it is, you don’t even have to think about your next move because your brain has already thought about it for you. Walking is effortless, clapping is effortless, crawling is effortless, eating is effortless, being... able-bodied..... WAS...... effortless. Being paralyzed was everything BUT effortless. It was exhausting. I had to think about how I could use my body as leverage to balance out this side of myself so I could do something with the other side; or how if I leaned a little this way it gave me enough momentum to shift that way. I had to figure out how to dress my self again. I quickly learned that things don’t fit the same sitting down as they do standing. I know everyone knows what I’m talking about. Things seem to be maybe a little tighter, or crinkled. ((I always joke now when I’m shopping and find something I like but know I can’t wear because “that’s a standing or walking shirt” haha. )) It was just yet another challenge that came with the diagnosis. I used to have this saying “if you made me cry during a therapy session then you are doing your job well”. If therapy was challenging, I would typically get so frustrated I would cry while working out. It wasn’t that I was upset in a sad way, it was just me letting go of my anger at the fact I couldn’t do something. Well I wouldn’t say COULDN’T... I just had to figure out an alternative way to do it. I had such a love hate relationship with therapy. Looking back now I think it was just hard for me to accept the fact that I will always need help with something. I can live life very independently but asking for help is something I will need to do from time to time and that's okay. And I needed to learn that! THAT IT’S OKAY. ‘Help’ doesn’t make me any less of a person.