In March of 2009, while Alicia Regan was expecting her sixth child, she contracted Transverse Myelitis, a rare illness, which left her paralyzed from her ribs down. Regan outlines the common misconceptions people have about bodily function after paralysis in her blog, This Enabled Life.
I have been told so many times, “I never thought about that…I just thought your legs didn’t move.” I remember being at a funeral gathering and there were steps into the house. A couple of people were insisting to me that they could just hold onto my arms and help me up those steps if I would just get out of my chair. My legs were not the only problem! I have weak upper muscles, I have no lower back muscles, I have no lower stomach muscles, I have no rear end muscles, there are no muscles to hold my knees locked in, and there are no muscles to keep my ankles from rolling over. If they were to grab me by the arms, my upper body would stretch out and I would still look like I was in a seated position. I cannot get my rear up in the air…let alone move that leg they are talking about. I don’t think they are going to help me up any steps anytime soon…unless they want to carry me up in my chair, or let me get up them my own way.
Besides non-working legs, and depending on your level of paralysis, there are some other things that just don’t work. These are things that are not seen by others much, but they are non-stop in our daily lives. They are also some things that are hard to talk about because if you did, you would sound like you were complaining every day. We don’t like people who complain all the time, and we are quite sure you don’t either. So, these are things we deal with, and can at times be more frustrating than the non-moving body parts. It is many of these hidden issues, that affect our daily lives and activities.
Too much info right? We thought so too when we realized what paralysis has done to us. Our bladders do not function and neither do our bowels. We have to train our bodies and develop what we call a bowel routine for our bodies to work like they are supposed to. Once again, the lack of muscle control can make for some embarrassing situations. This issue makes for some emotional days for us. You should hear my story about my hour flight back home from London…and they do not make accessible restrooms on planes. Not good. That is the reality of life and why it is important that you please do not use a handicap stall unless it is an emergency. It does become and emergency for us. We all have a new pity for those little babies laying on a cold changing table in a public restroom. We are too big to do that, so it can ruin a fun day real quick. Because we try to avoid this scenario as much as possible, we have to “time” things. This is a learning curve as you try to read your own body. Traveling, diet, stress, a little tummy bug…any of these things can wreak major havoc on our schedule. So, it is an area that always has to be tweaked and you must stay alert to your body to keep your health.
Our bodies thermostat, to heat or cool or bodies, is located in the spinal cord. A normal, healthy human is able to maintain a constant body temperature of approximately 98.6F despite the temperature of the environment. In a hot environment, the body sends a signal to the brain via the spinal cord to say the body is overheating, the brain then sends a signal back down the spinal cord and tells the body to cool itself by perspiring which evaporates and cools the skin preventing hyperthermia. In cold weather, the body senses the lower temperature and our brain tells our body to constrict the blood vessels in our extremities, and keep the warm blood around our vital organs preventing hypothermia.
When the spinal cord is damaged, the thermostat is broken. It takes a very, very long time to warm up if you get cold, and it takes a very long time to cool down once you have cooled off. There are tricks that you learn such as a hot shower to warm up, or cold compresses on your neck to cool down. The sweating system messes up also as many of us do not sweat below our level of injury which also makes cooling down a problem.
There have been times, that my body was so cold that I felt hyperthermic. My thinking was very fuzzy, and I could not concentrate. I was not out in the snow. I was in my house and had just went out on my porch to talk to someone for a few minutes…wearing a coat. I just could not get warm. We are thankful for dual air control in our van. This summer, I have my heat on many times in our van, and I typically sit under a blanket every evening. I do not have as much trouble with heat as I do with the cold, but I have to be careful as I overheat much quicker than I used to.
My actual damage in my spinal cord is at the C5-C7 level. I have movement and sensation in my arms and hands, but they muscles get very weak when I am sick or tired. I have spotty sensation through my upper torso and have upper muscles that also get weak if I am sick or tired. I am an incomplete and am diagnostically classified as a TI0 because that is the level that I have no sensation or hardly any movement from that level down.
Only low-level injuries [TI2 or lower] will not have their breathing or coughing affected.
Many chest and abdominal muscles that help with your breathing [that you never even think about] will be affected by paralysis. In higher cervical levels, the muscles are so completely paralyzed that a ventilator is required to push the air in and out for the person. In lower levels, and depending on the degree of paralysis, your weaker muscles can breathe for you. Coughing is very hard because your cough reflex is affected. Coughing is very important to clear our throats and keep our lungs clear. This is why paralyzed people have a much higher risk for pneumonia.
Many of you who know me, know I love to sing. I can still sing but the amount of air I can hold, or how long I can hold out a note, has been compromised. I just cannot get a deep enough breath to hold out long notes. I do not notice a difference when I am just breathing regularly, but if I try to take in a deep breathe, it takes a lot of work. I can cough but I cannot get a hard cough out. Every level is different. I have upper muscles but they are weak. Once again, when I am sick or tired, everything gets weaker. Like anything weak, exercise is the best thing. Getting activity where I have to breath harder, and singing are great exercises for my weak respiratory muscles.
Many of us are on disability obviously because we are paralyzed, but there is more to it than that. Anytime the central nervous system has been compromised, you tire out very quickly. That is why when you suffer from a concussion, you want to sleep. A stroke, a brain injury, a severe concussion, multiple sclerosis, spinal cord damage…these are all things that affect the central nervous system. If you were to hike uphill all day long, you would reach the top exhausted. The time it takes you to reach a level of exhaustion happens very quickly for us. Our compromised systems just can’t handle it. A day out for me, which is so wonderful, would be equivalent to you taking 3 days in a row of non-stop activity. To me, this is one of the most frustrating parts of paralysis. I love to be busy and active and my body just will not let me. I try so hard and it wins. Learning to budget my energy has been the thing that I cannot seem to figure out. I am doing better, but I always think I am the Energizer bunny or something. In reality, I am a cheap brand.
Because of the energy levels, and many of the other hidden issues, it is very hard to work a full-time job. It is hard to predict what our day will look like. When will we have an accident and need to go home and shower? Are there colds going around that could land us in the hospital because we struggle with a common cold? Will I wake up with another UTI? Do I have the energy to work that many days in a row? These are very real questions for us. There are those out there that feel that drawing a disability check is the greatest thing in the world. It is a blessing, but we would love to have the health to work like we once did. I am a stay-at-home mom and home school and I struggle just accomplishing the daily work…and often just can’t. I don’t really care what people think about me or the way I have to run my home. I am just happy to be a mom and be alive for my children. My kids are pretty glad about that too.
I won’t use this post to get into the emotional side of paralysis, but that is also a hidden part that many forget about and misunderstand. It can be as devastating as the physical side. I will write about this separately.
In conclusion, when you know someone in a wheelchair who might be late for an appointment, might be in a bad mood, maybe can’t stay in the heat or cold too long for your activity, and is aggravated that you are in the handicap stall, then please be patient with them. They are not bitter cripples. They are just dealing with hidden things that don’t work and can’t really talk about.
You are spot on correct. Fatigue is a major problem for me.
Well said article
Aside from fatigue and stamina issues, which i agree are very real when you have a spinal cord injury, what almost nobody understands for me is the timing of everything. I have to plan my life around my disabilities. With a 4 hour catheterization schedule, nightly 1 hour bowel program and BID medications I can’t just jump in the car and do something. I often need at least 36 hours notice to make an event as if i cancel a nurse i prefer to give them the respect not to cancel last minute unless I’m in the hospital/ER. This all makes it hard to make friends my age (I’m only 23) or date (especially when i still live at home to save money while i finish college).
Thank you for your blog. My husband has been in a wheelchair now for 10 years and I am learning things from what you wrote that I never knew before. The doctors just don’t explain things thoroughly and I suspect some don’t understand quad problems that well.
A very interesting read. I am wondering if you are able to vomit. Thank you.
Of course vomiting is difficult and causes a great deal of back pain, but its a natural reaction to intense pain
Vomiting is extremely difficult, it’s absolutely awful for me I’m about a t6 para due to transverse myelitis also. I’ve rarely needed to vomit, and when I do I’m usually in the hospital already.
Thank you so much for sharing your honest thoughts. My mom is recently paralyzed to what seems like the same degree as you; thanks for giving me some perspective on her feelings. Wishing you best.