I have a lot of people who ask me, "Carson, what does a normal day look like for you?" As I answered this question many times, I realized that my life has become quite task oriented. Most of these tasks exist as a result of many secondary effects of my SCI (spinal cord injury). These are the parts of being paralyzed that I didn't expect, and that are very difficult for me. So, I thought I would walk you through the day in the life of Carson. I've decided to be quite candid and open in my comments, including things like bowel and bladder care. I promise not to be too explicit, but you've been warned! I will list the activities of the day, followed by some explanation of how the secondary effects of SCI affect me.
2:00 AM
I usually start the day very early in the morning with catheterization. Bladder care right off the bat! Some of you may already know that loss of function from an SCI also means loss of bowel and bladder function, but this is something that I didn't know about before my injury. This is a very significant secondary effect of an SCI, and requires a lot of attention. I have heard people say that they would rather have bowel and bladder control back than walk! This obviously means that I have to catheterize several times during the day. Initially, this was very distressing for me, not only because of how much time it consumed, but also because of the risk of urinary tract infections. UTIs are a common enemy of people with SCI, and let me tell you, they are not enjoyable. So why 2 o'clock in the morning? A bladder can hold enough to get through the night, right? Well, because most of my body is sedentary, my tissue absorbs much of the liquid I take in during the day. The liquid is then reabsorbed during the nighttime as I am on my back. This effect is exaggerated since I'm tall, simply because being tall means more tissue to absorb more liquid. So, I usually either have to wake up in the night to catheterize, or risk having an accident. It is also harmful to the bladder to allow so much liquid in because it stretches the muscle out too much.
7:30/8:00 AM
My morning regiment begins! This is without a doubt, the most painful, depressing and difficult part of my day. My mornings are so difficult for several reasons: Incredibly low blood pressure and intense nerve pain (both of which are the worst in the mornings), and the fact that I am not independent in my bowel care (yet). People with SCI in the cervical (neck) region lose a great amount of blood pressure regulation, which contributes to an overall poor feeling. For me, I often feel faint, nauseated, and just ill in general. Low pressure causes me to feel depressed, disabled, and incredibly fatigued, whereas with higher pressure I feel more optimistic, energetic, and ready to go to work. Blood pressure has been one of the most difficult things for me to deal with through all of my injury up to this point. Whether or not I've had a good day or a bad day is sometimes determined simply by my blood pressure. Unfortunately, the majority of my day is spent in the low blood pressure range. In order to fight pressure problems, I wear compression socks, an abdominal binder, and take blood pressure medication throughout the day. Just like some of my bladder problems, my pressure problems are exaggerated because of my height.
So, my mom or dad comes in to help me prepare for the day. The first order of the day is bowel care. I try to get up slowly so as not to upset my blood pressure, and then I transfer into a shower chair. The whole process of bowel care and showering is still impossible to do by myself. My parents help wheel me in my shower chair (which is too heavy for me to maneuver by myself) into the bathroom where it rolls conveniently over a toilet.
As I mentioned above, people with SCI do not have bowel control. In order to compensate for the lack of bowel control, we are put on a predictable cycle in order to avoid accidents. In order to have a bowel movement, the bowel wall itself needs to be
manually agitated or stimulated to get things moving (we are talking the bowel/rectal wall itself, and we all know there is only one way to get there…). This is where things get a little personal. This is a pretty invasive process whether you do it yourself or have someone else help you. For someone who doesn't have strong enough fingers to take care of this bowel stimulation, it requires the help of someone else. This just happens to be my predicament, and the predicament of many other quadriplegics. There maybe other methods of inducing a bowel movement as a quadriplegic, but I believe this is the most common. There is really nothing that keeps this from being a downer, to say the least. When this all started, I told myself that I could either hate my life every single morning, or I could get over it and not make it a big deal. I tried to choose the latter, but as a 23-year-old man, I can tell you that it's still a little bit demoralizing to need help with such a personal thing. The whole process of bowel care can easily take up to an hour, which is mostly comprised of waiting. This is then followed by a shower, which I can mostly do by myself now. My mom or dad usually stays near enough to me to hear if I call, just in case I begin to pass out because of low blood pressure (which has happened before).
After showering my mom or dad wheels me back into my room where I transfer back onto the bed and do the rest of my morning regiment. I take my medication, brush my teeth, and get the help I need getting dressed. I can do most of my dressing by myself, but need help with my compression stockings and abdominal binder. I am literally incapable of getting ready for the day without the immediate help of my parents. To get out of bed and upstairs to breakfast takes an average of an hour and a half.
10:00-4:00
This is my favorite part of the day, and really what I live for now. That is, physical and occupational therapy. I go to physical therapy at Neuroworx, which is in South Jordan. Neuroworx specializes in SCI or other similar disabilities. I spend as much as I can possible in physical therapy to get the best workout that I can. I go to PT four days a week, and OT two times a week, which means that I have to double up on one of the days. At PT I work to get stronger where I already have function, as well as work to maximize the possibility of gaining back more function where I don't have it (yet). I am spending a lot of time on my core muscles, and use two days of PT for swimming. Swimming has proven to be some of the best therapy that I could have asked for. It works my core muscles as well as gives me the opportunity to do something that I love. At OT, I focus on strengthening my hands and learn other functional skills, like driving.
5:00-Evening
The rest of the day I spend with my family at home, or try to get out with friends for some kind of activity. Most evenings I stay home because I feel too poor to leave the house by the end of the day, again thanks to blood pressure, but also because of fatigue from therapy. I love simply spending time with my family and friends, and sometimes go on walks around the block with a brother or sister if it's warm enough.
Bedtime
Bedtime is another long process, and still takes about an hour. I do the normal things like brush my teeth, catheterize, fill up a water bottle, and take my meds, but I spend most of that time getting situated in my bed so as to avoid pressure sores and nerve pain. Those without SCI will toss and turn during the night when a certain part of the body is not getting enough blood flow. If there's not enough circulation, that part of the body will go numb, which is a sign that you need to reposition. If the situation remains the same, the tissue will die. Bed sores are a serious thing to consider, so I have to take careful measures to ensure that no one part of my body is susceptible to extra pressure... I usually have to be especially careful with my heels. As I mentioned before, nerve pain is also a major source of concern for me. I experience nerve pain in nearly every part of my body that is paralyzed, so almost everywhere. This is not necessarily the case for everyone with SCI, but it is for me. The nerve pain is especially intense when I am touching anything. That being said, the soles of my feet, my bottom and thighs, and my forearms experience the most pain. My nerve pain ranges between 3 and an 8 on the scale from 1 to 10, and usually stays consistently between a 4 and 6. Unfortunately, all of my nerve pain is intensified when on my back, which can make sleeping very uncomfortable. Using a body pillow to tilt me on to one side can usually alleviate some of the pressure off of my spine. Once I have checked that my alarm is set for my midnight catheterization, and checked the intercom that connects to my parents room, I am ready to sleep! Mission complete.
So that's a day for me! I recognize that I am still only four months out from my initial injury, which is a very short time for someone who has had an SCI. Some of these secondary problems may resolve themselves, like my blood pressure, neck pain, or needing to catheterize in the middle of the night. Others most likely never will, like bladder and bowel issues. Everyone who has an SCI may experience something different when it comes to secondary side effects, but none of them are usually too enjoyable.
I have heard others say it, and I echo their sentiments when I say that being paralyzed is the easiest part of being paralyzed. If I only had to worry about mobility and not walking, my life would be so much easier. It's the constant pain, the feeling of always wanting to pass out, and the bowel problems that seriously get me down. It's all of these other side effects that make life so task oriented and somewhat robotic. When I first had my SCI, I was devastated at how much time it took for me to do every single thing. I used to live my life on the go, and would simplify anything that took too long to do. Now life seems to have simplified me. Rather than graduating or working on a career, I work on wiggling a finger. While others progress in relationships or achieve great things, I'm just trying not to have an accident that day.
I continue to work on adjusting my perspective on my situation to feel like there is purpose behind this, but it has proven to be very difficult. I hold on to the belief that good things come to those who wait, to those who work hard, and to those who force purpose into their life. Do I wish I had a "normal" life experience? Yes. Would I go back to December 30th if I could, and stop myself from jumping into that foam pit? In a heartbeat. But what's done is done, and I can only make the best out of the remains. One time I had a friend who made me think of something in a way that gave me some hope. She said something like, "Carson, you don't have a normal life like everyone else, and it's hard. Really hard. But you know, I think because of this, God has something in store for you that is better than normal." The gist of her comment was not that I am better than normal, but that experiences that are especially difficult can teach us especially unique and powerful things. I believe that. And as I wait for those experiences, I will do what is in my power to improve, learn, overcome the obstacles in my path, and defy the odds.
