[fusion_text][dropcap]T[/dropcap]his post will be sort of a tie in to my previous and rather popular post Early Childhood and CP. This one as you may have guessed from the title will revolve around my teenage years, and how the CP affected me during those already turbulent times.

Click play to listen to a recording of this post:[/fusion_text][soundcloud url=”https://api.soundcloud.com/tracks/226268244″ layout=”yes” comments=”yes” show_related=”yes” show_user=”yes” auto_play=”no” color=”#ff7700″ width=”100%” height=”166″ class=”” id=””][fusion_text]

In fact, I´d say that this period of my life (+ my early twenties) was without a doubt the most difficult and dark time for me, partly due to my CP, and partly due to just a challenging life situation in general. Normal teenage troubles contributed it´s fair share to my difficulties as you might expect, but when they were paired with the CP, I think it created some challenges that those who do not have CP, can’t experience, at least not in the same way.

Identity

Throughout my childhood and up to my early twenties I struggled with being different. The physical differences were one thing, but the hardest parts of it all was that I felt so normal in many ways, and wanted to forget about the CP, and be like all my friends and like a normal teenager, whatever that is. That didn’t go so well. I didn’t want the CP to be part of my identity as a person; I wanted to distance myself from it, as much as I could. And this was not easy to manage emotionally especially since I, like most teenagers had problems with finding my identity already as it was. I needed to find who I was, what sort of an adult I was growing in to, the only thing I thought I knew at the time, was that the CP was not part of it.

I bounced back and forth in my mind between feeling hopeful that I could achieve great things with my life, and feeling that I had no value what so ever, and I felt like a complete failure, a sort of mistake of nature, that was meant to be “corrected”, but weren’t. The latter thoughts were not easy to handle of course, but I think a lot of teens have this feeling of uselessness or not measuring up to the expectations of those around them, the difference I had, was that I had a clear enemy to blame it all on. Perhaps I knew that in my mind, maybe I thought that distancing myself from the CP would also distance myself from those negative thoughts and emotions… Of course, that was not the case, if anything, it made it worse. This battle, and the importance of accepting my CP is something I talk at length about in: A Tribute to Cerebral Palsy and Live in Harmony with CP among other posts, so if you feel so inclined, please check them out if you haven’t already.

And then there was the question of, how do I fit in with my friends? I was a normal teen in many respects, I felt a need to fit in and to be accepted, and it was at time stressful when I felt that I didn’t. One of the most stressful things for me I remember was romantic pursuits and my relationship with the fairer sex. Girls weren’t all that interested in dating someone with a disability, and I didn’t really think I was someone who girls wanted to date either. The fact that I was a bit of a geek probably didn’t help either. I kept a lot to myself, even though I had many friends. I found comfort in indulging in my hobbies and being alone with my own thoughts.  I remember though, the thought of ending up alone, all by myself, was and at times still is a scary one. Luckily once I exited my teens I grew in confidence, and girls was able to see me, for me, and not my CP.

Fatigue and Exhaustion

My teen years was also the first time in my life I had a real run in with the exhaustion that can occur when you live with CP. I had gotten tired lots of times when I was younger, but that was pretty normal, and I was usually fine the day after, worst case scenario would be some stiffness for one or two more days, and that was it. That is not the case with the kind of exhaustion I am talking about here. The best way I have found to describe the feeling I have when this happens is influenza like symptoms. It goes well beyond the regular stiffness or spasticity that I experience on a regular basis. My entire body hurts, I often feel dizzy, and my balance is worsened. Simple tasks can seem insurmountable, as an example, just lifting my hand can be physically demanding, or at least it feels that way.

All of this came as a shock to I admit, partly because it felt very sudden, but also because I had heard the warnings of late effects and fatigue and exhaustion from physical therapists and doctors when I was younger, but I had a hard time understanding such a concept, and it all seemed so far in to a hypothetical future that I didn’t give it too much thought. I was wrong.

During my last year of high school it was particularly bad, and it kept me from partaking in a lot of the normal activities my friends were doing at the time. Part of me felt ashamed or scared that they might just think I was lazy, or that I was just boring, and would rather stay at home than to spend time with them. It was difficult for me to talk about this with my friends, because I felt they wouldn’t understand, how could they? After all I didn’t understand this new reality myself at the time either.

I remember my parents being worried at this point. They were used to seeing me up and about, despite of the CP, and they knew that this was something beyond just regular tiredness after a day of physical exhaustion. They were afraid I had gotten sick, and so they made me go see the doctor. He concluded after quite a few tests that there was nothing physically wrong with me, and that it had to be exhaustion. Wisely, he decided to send me to a center here in Norway and a hospital that had a lot of experience with CP and its effects, and it was there I learned what was really going on, and how much energy my body was really spending each day.

What I Would Tell My Teen Self

Looking back I would have told myself to not try to disassociate myself with the CP, but rather to start to embrace it sooner, as that caused many heartaches and frustrations as I went through the teenage years. I would also tell myself to focus on finding what I was good at, and doing that, instead of desperately trying to fit in, and trying to adjust myself to fit other people’s expectations of me. I would tell myself that the warnings of exhaustion and late effects were not over-dramatization by the doctors, and that those things are very real. That may have made me pay more attention in doing exercises or not pushing myself too hard, thinking I could do it all. Finally I would also make a point to tell my teen self, that I need not be afraid that no one will love me, and that the way to become attractive, is to be comfortable and happy with oneself, not to strive for some imagined ideal that I perceive others to have of a potential partner. So in summary:


What are some of your experiences with teenage life and CP ? And if you are a parent, maybe even of a teen with CP, what are your concerns, experiences and tips that you have picked up on? Please share with the community in the comments below. And if you liked the article, I would greatly appreciate it if you shared it on your favourite social media platform. It really helps! 🙂[/fusion_text]

8 Responses

  1. Hey Alex, my name is Sam. I am in grade 12 and I have CP. I would just like to say that that was very well written. It is amazing that you are a writer, I want to be a writer too. I really appreciate you taking the time to write this article, I apreciate it very much. I would like to help out if you want this to become a forum. Let me know!!

  2. ps. my son is in primary school and i wonder how i can help him. he will soon discover other kids seeing him as different, how best for him to deal with this…

    1. Hello and thank you for commenting Elisabetta! That is not an easy question to give an answer to. But I think the most important thing you can teach him, is that its good to be different. Everyone is different, but not all are different in visible ways. And then he should also focus on what he can do well, what his strengths are, rather than what is “wrong”.

    2. Elisabetta – I suspect he’ll do just fine..times have changed. I work in a mainstream 11-18 school, and we have at least 3 children with CP..one with a frame, one with a chair, one with crutches..oh, and me, a disabled CP affected technician. Far from being treated differently, they’re really accepted and when I give talks to classes about CP and how it affects me, the kids are full of questions, but are always accepting and supportive. To quote my daughter, as taught in her school..”everyone is different”.. 🙂

  3. i love this! My 4 year old daughter has sd/cp thankfully it only affects her from her hips down and slightly on her right side (but not enough for anyone to spot from looking at her) I often find myself wondering about her as a teen/adult bc we have never treated her any different. If she wants to do something (within reason) we let her. She is very independent and wants to be a ballerina. This article has put my mind at rest a little. Thank you for this and please keep writing!

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