Cerebral Palsy has made its presence known physically (and mentally) since I was born. Whilst my mind has gotten its fair share of challenges due to the CP, so is also the case with my body. The physical aspects of CP are often the most talked about, online, by doctors, other healthcare professionals and at least in my experiences also the people close to me.
Naturally, my parents were most worried about the obstacles and challenges they could see, they could see that I struggled with certain things physically, and they could see when I was in pain. If I was depressed or sad I kept it much more to myself and under wraps (hence why I focus so much on it in my blogs). While the mental challenges of CP are extremely important, I also want to chronicle my experiences of CP physically speaking. So, the most natural thing to do when doing so is to start at the beginning, so lets do that shall we? 🙂
I was born 3 months ahead of time (I’ve always been the impatient type) on the 30th of January in Trondheim, Norway, 1987. Obviously this was less than ideal, and as a result it was really touch and go there for a few weeks. My parents told me when I got older that the doctors estimated that I had about a 50% chance of surviving; luckily I won that coin flip. I was a pretty small guy weighing in at 975 grams or 2.1 pounds and measured a modest 38 cm or 14.9 inches As you can see from the below picture, I was in an incubator for the first weeks of my life with all sorts of wires attached to me, to keep me alive.
My premature birth resulted in a few different complications. My lungs were underdeveloped, and even though I got injections to help stimulate their growth, they never reached the full capacity; as a result I operate at about 60% of a normal lung capacity today. The largest complications of all, is the sole reason this website exists of course, the CP.
My parents were unaware of the fact that I had gotten CP until I was almost 2 years old. They had noticed that I was not developing as quick as the others when it came to mobility, but I was developing very well in other areas like speech and language (Probably why I love writing, and blabbering on today). During a routine meeting at the hospital they had a picture with them, of me, and the doctor instantly became suspicious when looking at how my legs rotated in the picture, so he had me examined thoroughly for the possibility of CP. My parents didn’t know much about CP at the time, and from what they have told me, it was a very scary and tough time for them. They even got told by people around them: “I am sure it will pass” or “Can he be cured”, thankfully awareness of CP is a lot better today, although there is still a lot of work to be done.
Like I wrote in my post about CP and Guilt, it was hard for them to handle that I had such a serious condition and that it would be something I would have with me for the rest of my life. But my parents have never been the sort of people to just give up so they moved to a smaller place in Norway where I could get more focused and individual attention when I started kindergarten and school later on. I had regular appointments with physiotherapists and physical therapists, doctors, neurologists and the like. For the first years of my life I used AFO´s and a walker to support myself when walking. I absolutely despised the AFO´s and was quite pleased the day I could throw them away. If I could help it, I wanted nothing that would serve as a constant reminder that I was different, even if it was good for me.
When I started walking I did so on my toes, my Achilles tendons were tight, and as a result I was not able to place my heel down when I walked. Because of this I was selected for an Achilles lengthening surgery when I was around 4-5 years old. It was the first time the CP really had a big impact on my day-to-day life, and the days wearing the full casts were challenging at first. In hindsight though, I will say that this surgery was extremely beneficial, and I doubt I would have the same level of functionality as I do today without it.
Even though the surgery was a success, the CP still presented some frustrations and challenges physically for me as a child. The most notice was that I could not run as fast or keep up with my friends physically, but that was oddly enough not the worst for me. The things that impacted me most physically were the small details, like the fact that it was difficult for me to tie my shoelaces, or the fact that it was challenging for me to write as well as other kids with a pencil or pen. Or that it took me a longer time until I was self reliant when going to the bathroom. These things may seem small, but they all add up as a potential source of self-doubt and self-criticism, since none of my friends had these issues. They were also downplayed as a part of the CP, that got limited to the way I walked or other very noticeable things. I will do a whole post dedicated to this coming up.
Physically speaking, I was doing okay with my CP, except for the fact that I got tired a lot faster than my friends, and had to suffer the day after soccer practice for my stubbornness and need to be included. But I don’t regret it; the fact that I participated did more good to me mentally, than it pained me physically the day after.
After my first surgery I went on with my life up into high school without so much as considering the idea of another surgery. I thought it was a one off thing that I had dealt with. It was a bit of a shock then, when the doctors suddenly started saying I should have another major multi level surgery. I reacted by refusing quite vocally as I felt just fine, and didn’t need any surgeries. They were quite adamant that I needed it however, and so we eventually came to a compromise where I could finish both high school with my friends and my 3D Design schooling before I took the surgery.
The surgery was fairly big. It involved lengthening the tendons on the backside of each knee, the same with the tendons on each side of the groin area, as well as moving the quadriceps muscle on my right thigh to give my right leg better flexibility and movement, and to stop it from rotating inwards as much. The recovery was about a year long, in which the bulk of it was spent at the hospital and recovery institutions. I also had to have a dreaded reunion with the AFO´s, and guess what, I hated them even more now than I did as a child. They were completely stiff so that I could not bend my knees in any way, including during the night.
I think it would be an interesting experiment for those that have never tried this, to see if they could fall asleep at night not being able to bend their knees at all, let alone function an entire day.
The surgery did help however, and I am happy today that I had it, it has helped me get more use out of my right leg, and in general a little more flexibility. But hopefully it has also helped to reduce the eventual late effects of the CP that I know will come when I get older. The fear of that was also what led me to agree to the surgery in the first place. I’m working on a post about late effects and CP as well, so keep an eye out for that.
This post is meant to be more of a general overview of some of the physical challenges the CP presented me with so far, and it was impossible for me to go into great detail about different aspects of this in this post, as I would rather devote individual posts to that in the future. If you liked this post or found it helpful, please share the article with your friends and others, to help this site continue to grow!