Living with a Spinal Cord Injury
"Can only describe my life as a a genuine living hell."
This article will likely be a bit longer than most. Like my others, it will be dark at times — but I feel that is necessary in being 100% honest. I have no intention of sugar coating my injury and what my life is like now. Before my injury I had no idea what it was like to be disabled. I had to learn the hard way.
March of 2019. I won’t say the exact date. This is a date that I will never forgot. At this point it means more to me than my birthday. This is the day I was reborn into a new body. What I remember most that day is that when I was driving home from my morning shift from the restaurant that I served at. I thought to myself “I have never been this happy. Everything is perfect. I have a girlfriend who loves me, a wonderful job, a place I can call home, and the best dog a man could ever ask for. I was flying out to California that night. I lived a life I used to dream of having.” Ironically this became the worst day of my life.
There is a reason people always say the highest highs are usually followed by the lowest lows. Around 10pm that evening I was shot point blank by a .40 caliber revolver. Pointed straight at my spine. it was a miracle I survived. I never really understood how important the spine was until I woke up from a coma two weeks later. I was still on a ventilator so the only way I could communicate was with a pen and paper. A doctor came in my room not long after I woke up. Thats when he broke the news. He explained to me I would never walk again. I just burst into tears. I did not need a pen and paper to communicate, my face said everything that was needed. I used to think breaking the spine was no different from breaking an arm. (Yes I am an idiot, science was always my weakest ‘subject’.) And now I was paralyzed for life.
My spine was now reconstructed from T4-T8 vertebrae. I have two large metal poles pointed vertically on eithers side of my spine, a lot of screws, and a small piece of my lung missing because they had to get the bullet out after it ricoched into my lung. If you are not familiar with what the vertabrea of the spine each do, I would highly recommend educating youself for a minute. With a reconstructed spine and shrapanel still stuck in my back I was now disabled for life. Because of where I was shot, I was essentially paralyzed from my nipple line down. I had very minimal ab control/strength and zero movement in my legs or toes. It was a blessing I even woke up and survived. It was a blessing I could still move my arms. Most importantly, I am beyond blessed to have a family that supports me as much as they do.
The first year was the hardest. I was angry and cried a lot. However when I went back to school 6 months later and was very active with physical therapy. I had a lot of hope that I would walk again. I constantly read stories on line of people who walked completley fine years after their injury. A nurse at the hospital told me her uncle was paralyzed by a GSW like myself, and 20 years after his injury, he just started feeling his legs and stood up and walked. At PT my leg muscles would activate on occasion slightly. Same with my glutes. This excited me at first. However, nothing ever came of it. Insurance is fucked and only pays for 12 PT visits a year once a week. How is someone with a SCI supposed to properly recover with an hour of therapy once a fucking week? Regardless of lack of PT visits, I started losing hope I would ever recover the way I dreamed of.
The second year the hope began to wear off. Not because of insurance and my lack of PT visits. But because I realized I set my excpectiations too high. I began accepting my new reality. The therapists at PT rehab always told me I just had to accept this was my ‘new normal.’ I used to argue “that will never ever ever happen, fuck this life.” However here I am 4 years and 3 months later, finally fairly content with my life. Finally accepted that this actualy is my ‘new normal,’ I still have days and weeks where I cry. Where I feel like a burden to the point that I question whether it would be better off if I was gone. If I had never woken up from that coma. For the most part however I am truly grateful to be alive. Sure I have other complications other than the ones explained below. However they feel like nothing compared to the pain endured knowing I am crippled. When you pair this with depression — its no surprise I have the feelings I do.
Now let me explain some of the complications I suffer with. The reason I call my life a living hell. For starters, I am just going to go right out and say it since I am sure you are wondering —yes, no ab control or feeling in my legs means I have zero feeling in my dick. I need to use a catheter to piss into a bag 4-6 times a day; which is then ripped open and emptied into the toilet. I have to piss on a schedule. If I wait too long, there are many times where I have had accidents and pissed myself. My absolute least liked part I deal with. Even though it is out of my control it still pisses me the fuck off everytime. When I first came home from PT rehab I had days where I would have to change my pants four times a day. I cannot even express how angry that made me. There are times when I can tell I need to use the restroom; however I am never certain. Thankfully the incontinance issue has gotten much better. Only took four years for me to find the right medications.
When it comes to shitting, that’s a little easier. I just shit every other day in the morning using an enema. It still sucks but its better than pissing yourself. #2 accidents only happen if I eat something I should not have. So I eat the same thing daily. But that’s not worth talking about.
My bladder issues are not my only problem. I also now have crippling chronic pain that could only be helped with high doses of pain medication. I tried to give up the medication 3 times in the last 4 years. To find out if I really did still need it. Unfortunately I always have to go back and start taking it again. Another miserable complication with my injury. My back pain keeps me in agony. I cannot get out of bed to sit in my chair unless I have my pain medication. This pain never goes away. Even to this day, I struggle with it. It never feels like I have enough medication.
Another issue I suffer from is my goddamn motherfucking muscle spasms. Every morning when I wake up, I try to straighten my legs and they probably shake for a good 3-5 minutes before I am able to get up and continue with my day. These muscle spasms don’t happen just in the morning however. Throughout the day my legs try to fold up into a sitting position. The spasms have thrown me out of bed and out of my wheelchair. They make me extremely uncomfortable at least 5 times a day I would guess. Having zero control over the lower half of my body I just have to wait for the spasms to stop. I have tried every medication available, and it still persists. The medication I take now does sedate my legs for short periods of time, but not nearly enough. Honest to god, I would cut off my legs if it meant getting around easier and fewer spasms.
The second complication I wanted to discuss is how fucking hard it is to be handicapped in a city. I finally understand what it means to feel like a second hand citizen. Even navigating campus is a challenge. You have no idea how much I took my legs for granted. I think everyone takes them for granted. Everything is an obstacle for my wheelchair. Need to get up a curb to get in the building/onto the sidewalk? Nope, go fuck yourself. Want to go to a friends house to hang for a bit? Need 2 friends to help carry me up the steps. I cannot even visit my family in Europe due to how inaccessible the country will likely be. I miss my extended family so much. I pray one day I will finally be able to go back. In conclusion: fuck steps.
I want everyone who reads this article to think about how often they walk up a step. Whether it be a curb, your home step, getting into the house. Any thing that an individual with a wheelchair would not be able to get over. Pay attention to how inaccessible buildings and sidewalks really are. You will very quickly understand the struggle I deal with. If you really want a challenge, slide around on your floor dragging your feet, without moving them, and see what my life is like at times.
Examples of things I have had to do since I have no leg movement— There have been many times where I haven’t been able to fit my chair into a space, my garage for example. I have two garage doors, and occassionaly the one I come in through is blocked by a car. So I have to fall on the floor, and crawl like a snail to where I need to get to. In this case opening my other garage door and then crawling back and pulling myself into my car. Everytime I go up or downstairs in my house its the same, have to get on the floor and crawl up the stairs, one step at a time. At least my shoulders are strong. Leaving my current house with my wheelchair myself is only possible if the ground is not muddy. I can push myself around my house, up a hill that is about a 20 to 35 degree incline. Its tough, but you learn to adapt being handicapped.
Being a paraplegic affects me a ton. First off, I cannot do all the things I used to love doing. Going out whenever, hiking through parks, and most of all walking my baby of a dog Coco.
In addition I feel like a burden 24/7. I used to dream of being the man of the house. I can’t even fix a leaky sink now. Being handicapped has made it difficult to find a job that fits my needs. I could go on, but those are the main points.
My absolute least favorite part of being injured is this: I cannot tell you how much I miss sex. I loved fucking. Just as a 21 year old should. Before I was shot, I considered myself a bit of a womanizer. Sex was part of my routine. I always had some kind of girlfriend or someone I was talking to. I loved the thrill of chasing woman I was attracted to, and it only boosted my confidence when I got with the girl. Seeing my parents terrible relationship made me dream of having a perfect marriage myself. I had self esteem issues throughout grade school so finding out woman were attracted to me was a big deal for me. Naturally I fell in love far too easily and far too often. I had a bad co-dependence issue in college. I always needed a girlfriend by my side. I lived with 3 different girls throughout college. After the first date, they happily moved in.
Now however with my injury, I am not sure I am ever going to get married. I will likely be alone the rest of my life. I have grown to be okay with that. I still don’t really love myself, so how could I ever love someone else properly? I do not want someone to take care of me. I want a partner that will let me be independent, and love me for who I am. The old me would never consider dating someone who was disabled. So why would a beautiful intelligent woman be interested in me?
One win that I had a little past two years of my injury I finally made myself nut. It didn’t have the same phenomenal sensation as before, but it was still something. However by that time, my girlfriend who was with me before I got shot had already left me and moved on. I do not blame her at all. It was not easy living with me that first year. But that silver lining with nutting gave me hope because it meant I could still possibly have kids of my own one day. And it showed that I did have some feeling below my injury. Just one extra thing to keep me going.
Now I know that was mostly filled with negativity. But trust me, I am extremely grateful I am still here. Even with all the bullshit I deal with. Thankfully after 4 long years I finally have my medication set up so I no longer have accidents pissing myself and my pain is mostly under control. And I dont have to take 10 pills a day! (only five lmfao). In addition, I have met some great people on twitter and discord I would not have met otherwise. People I consider close friends. I never would have discovered financial markets the way I did. I have always felt everything happens for a reason. I know whatever power above, whatever god you believe in, kept me alive for a reason. As far as I am concerned. It was to accumlate wealth trading, become a philantripist, set up my family for life, and public speak so others can hear my story. If I can save even one life, prevent them from going down the wrong path. That would be enough.
There is so much I still want to do. When I am not stuck in bed depressed, I have never been more motivated to get shit done. The plus side to being handicapped is I cannot fuck around the way I used to. Im stuck home at my desk watching markets or studying. Going to the bar 5 days a week is a no go. Mixing party drugs is a thing of the past. I still appreciate and love beautiful woman, but I do not chase them the way I used too.
In conclusion. Yes, my life is a living hell. But that doesnt mean its over. Life is still fucking good. I have a roof over my head and a family who loves me. That is more than most people can say. If you read this and you think your life is hard and unfair. You need to take a look at the big picture. Appreciate the things you do have. Yes this is coming from the man who wrote an article on depression yesterday. But I always bounce back baby. Everything only sucks if you let it suck. I compare my life to those in third world countries. Even in my crippled position, I still have it better than most. Sure I am in debt but tbh money is imaginary and meaningless. It comes and goes. Just have to accept that.
Thank you to those of you who read my posts. I hope you have a wonderful Tuesday. Keep your head up and keep your spine safe. Stay positive. Appreciate your health. I know I wish I had. Much love to all of you my friends. Special shout out to Lydia.
-Pasha