Once When I Was Little
Whenever I’ve gotten close to people over the years they all tend to ask me a familiar question, “Was there a time after your accident when you were depressed or sad?”
I think this is a common question because for most people, whether something has happened to them or not, there’s times in life when you feel sad or depressed. I’ve had to realize over the years that I’m wired differently than most people. My short answer was usually no, not really. Their reactions were mostly disbelief, confused, or they would say they’re “inspired” that someone in my position could feel that way. I guess my answer doesn’t tell the whole story. Although I haven’t had times when I was sad about my situation, I want everyone to know I’m not just happy all the time. I do have tough moments dealing with fears and frustrations.
It was very scary early on, realizing my instability and dependency on others. Looking at the statistics of how many people with my level of injury survived their accidents at all let alone how many survive past 5 years afterwards. I had to come to terms with pain, discomfort, and death pretty quickly and the possibility of these were always right around the corner. Still are to some extent. There was a time when I was in high school, we stopped back at the house to grab something after school, my nurse ran inside to grab it, I was in the van and I wanted to tilt back in my chair for a minute while she was in there. As I tilted back I started to spasm, my hands came down, and yanked my ventilator out. In this situation usually I would click with my tongue to get someone’s attention. I’ve done it so loud that they heard me at a football game, but it wasn’t loud enough while I was in the van. So calmly I tilted the chair the rest of the way so blood would stay in my head longer. My chair had lights at the time so I went to my lights and started to turn them off and on. After that I knew that was all I could do. I closed my eyes, and continued turning the lights off and on. In that moment I thought if this is how I go, how do I feel. I felt very relaxed, very content. I wasn’t scared or nervous. Luckily my nurse Sugar came back in a minute or so and then I clicked, she put me on air, everything was fine. Obviously she was pissed I tilted when she wasn’t there but everything worked out.
Another time, we had a new night nurse, let’s say his name was Captain Dumbass. Captain Dumbass was here from another country I can’t remember which, he was fresh out of school, and he was very by the book when he would do things. I wasn’t very fond of him but we needed someone so my parents could get some sleep. It had been about a week, maybe two, after he was with me by himself at night when one morning I had a mucus plug in my trachea, blocking my airway. I asked him to do a cough assist, he was very slow, and once it was going I realized it wasn’t strong enough to push through the plug. He tried suctioning but it was too thick and he was too slow so I was starting to get dizzy. I tried to figure out what to do, quickly thinking about what he had done so far. I lipped the word “bag”, for him to grab the ambu bag. Through all of this I couldn’t talk and when I lipped “go get dad!”, he stared at me like he was freaking out and had no idea what I was saying so I knew I had to say things I had said before. I kept trying to call for dad but nothing was coming out. So now he’s bagging me and the amount he was squeezing wasn’t strong enough to push through the plug, I could tell he was doing whatever they told him to do in school because it seemed like he was counting. I kept lipping to him as clear as I could bigger, bigger, bigger, bigger, until everything started getting darker and darker, eventually I passed out. As I was passing out I just knew. This could be it. I had another moment of just thinking, well I’m okay with this. I had passed out before, twice in the hospital. This time was different. I wasn’t getting any air. I had Captain Dumbass with me. Even with knowing all this, I actually was comfortable somehow. I’ve heard people say that when people die this way it’s actually really peaceful and I can tell you it was. Like I was going to sleep. I woke up a couple minutes later with dad over top of me doing cough assist, he was bringing the knees of the bed up, and I believe EMT was already there standing at the foot of the bed with absolutely no clue how to help. The fact that EMT was there already gives you an idea of how long I had been out. When you wake up after passing out it feels as though you’ve just woken up from the most peaceful deep sleep you can possibly imagine. Dad said later that he heard me loudly scream his name and he rushed upstairs. To this day I don’t remember doing so, at least not anywhere near where he could hear me. Maybe there was one last burst before I drifted away. Maybe Captain Dumbass called for him. Maybe his daddy senses went off. All I know is that I woke up.
Through these experiences my fear of death has disappeared. My view towards death now is that no matter what is going to happen I’m not going to be able to control it. If today is the day I’m going to die then it’s meant to be. But I don’t think it is. Before my accident I used to have this strong underlying feeling in my heart that I was going to die young. The feeling was especially strong the day of my accident. Afterwards I understood the feeling as being for this to happen. I know I’m this way for a reason. It’s challenged me and made me grow in every way that wouldn’t have been possible otherwise. Not to say I didn’t struggle prior to my accident but things were much easier to figure out, I could avoid things I struggled in and didn’t like doing. School came easy to me. Sports came easy to me. Girls came easy to me. Everything seemed to be easy for me to get a grasp of. Now it seems like every insecurity, every inability I have, I’m forced to deal with every day. Even if I’m able to figure something out mentally there are fundamental disadvantages that don’t allow me to do what I want. I haven’t had that feeling of dying young since my accident, and it’s actually quite the opposite. Whenever I think this might be it, I have an overwhelming feeling that someone is looking after me and that I’ll be okay. With this I’m no longer worried or fearful of what’s going to happen. Whether I’m here or not here, I know someone has been looking over my life and will continue to do so.
I do still have difficult moments though. In my difficult moments rather than getting sad I tend to get irritated and frustrated. Recently I’ve been working out a lot, putting in a lot of effort every day. I do hours of electric stem therapy and stretches every night. I’ve been getting up every morning doing an hour on the quadriciser, not just letting it run but actually mentally pushing my legs and arms as hard as I can. Then when I get off I float my arms for two hours and do at least 400 reps on each arm. All of this work and all my motivation is so I can do things on my own again. Not because I’m sad. Fuck being sad for myself, I’m angry! It irritates me that I can’t do anything! There’s times I’ll look at something sitting in front of me like a drink or my phone, then look at my arm and hands and I’m just like why the fuck won’t you move! It’s right there you can grab it. Just move!!
It pisses me off that I have to have someone with me all day every day. I’m irritated by everyone that has to do things for me. It’s not their fault either, it’s nothing they can control. Everyone does things differently. But everyone’s different is constantly forced on me anytime I want to do anything. Whether it’s something complicated like organizing my closet or something as simple as moving my arm five inches from here to there. If I ask this person to help do I trust them to handle my records and technology without damaging it? Are they going to give anything some thought or are they going to rush through it like they rush through everything else? Do I trust them to move me without twisting my shoulder or yanking my arm?
Anytime I want to go anywhere I have to first think, can I? Do I have to buy two tickets for me and whoever’s with me? Am I going to have someone with me? Who’s with me? How long? Am I going to be irritated by that person the whole time I’m there? I never want to even try traveling because of it. Just thinking about it stresses me out. Making sure I have all the equipment I need. What if the equipment is destroyed or malfunctions while we’re transporting, do I have to drop everything and come back? The times I traveled in high school for marching band, each trip was so dependent on whether the people taking care of me meshed well. If not, I was constantly hurting or uncomfortable. Everyone was irritated. And we just fake smiled through it.
I’m just tired of everything being so goddamn difficult. Going to school it takes me a million times longer to do everything so if I’m not spending every second of every day being productive I’m falling behind. I can’t move my hand to write on paper so I rely on others to take my notes and I basically have to visually memorize every single lecture, every page I read, and every word that’s spoken. I’m grateful that I’m capable of doing so but come on. I’d be lying if I said I didn’t recognize every disadvantage that I have.
I’m just tired! Tired of not being able to sleep because I’m uncomfortable. Tired of depending on other people, not able to do anything my damn self. Tired of not being able to touch and feel anything. Tired of being like this! I’m just tired!! I hate the way people have to feed me! I hate that I can’t do anything for anybody else! I hate that I have to turn every three hours otherwise I’ll get sores and just be in pain. I hate that I have to drink water when I’m not thirsty otherwise I get UTIs and other infections. I hate that I’m putting all of this work in every day for the tinniest of gains!! I hate that I can feel my entire body more and more each day so much that it hurts but yet I can’t move a fucking muscle!!! I hate that this is my motivation to get out the chair! My nurse was sitting right in front of me the other day when I was working out and probably didn’t even notice I was in tears pushing myself, thinking about how bad I want to move!! I just hate everything about this, it sucks! The crazy part too is, I hate being this angry! I hate that all of this pisses me off and that all of this bothers me so much. I’m always trying to let things go. Telling myself it’s okay. Telling myself it’ll be alright. Every time one of my nurses talks about needing a vacation, a week off. All I can think about is wow, wouldn’t that be nice? A week off from being me. A week off from not being able to move or feel. A week to feel like me again. Ugh what I would do for that. But that won’t happen. That only happens when I’m out of this chair once and for all. Once I can take all of this equipment, all these contraptions, and light them on fucking fire!
All of this just takes me to the point where I just have to laugh. Laugh at what life gives us. Either that or cry, and I do that too. Nothing feels better than a heaving, snottiness, lip quivering cry to just let all your frustrations out. That’s probably what this post is going to be. A written explosion of my emotions. I’ve been trying to figure out how to bring it all together but when I’m having my touch moments this is how my mind feels. Everything jumping out, not knowing where my true frustrations are, just everything shooting out at once. I do think it’s gotten better over the years and will continue to get better where I can feel like this less and less often, but this is me at times. Each of these pictures are a time I remember feeling this way to some extent. Hours before, minutes before, sometimes seconds before they were taken. These moments are also what got me through them.
My fears lately are probably similar to most people’s, especially other 24 year olds, right now. Recently I’ve been feeling very fearful about what I want to do next. Whether it’s school, work, or our nonprofit. Do I go to grad school for my masters and most likely Ph.D even though job applications are getting more and more critical. Do I continue applying to jobs and find a 9-5 mon-fri knowing that’ll pretty much consume all my time blocking anything else I want to do.
As for The Drew Crew I have ideas where I could go forward. After talking with a friend the other day I’m thinking about starting an instagram, podcast, or YouTube channel. Something that can grow and generate on it’s own. All of it scares me though. I really don’t know if I am even interesting enough for something like that. Would I have enough to talk about each week? Also, am I ready to relinquish even more of my privacy? Whatever I do next I want to fully commit and that means opening myself up more, giving everyone access to see me and that scares me. Do I delete all my old posts that might’ve been vulgar, or ratchet, or childish, or do I keep them and move forward with them there for people to go back to? I don’t know what I’m going to do but I can feel it in my heart that this is what I should do going forward. I just need to take a leap of faith, and go for it.