How cerebral palsy can affect people very differently from one day to the next
Let’s get this straight from the start: there is a wide spectrum of abilities for people who have cerebral palsy. Some of us can walk unaided and some of us have to rely on an electric wheelchair to get around. It can affect just one hand, all four limbs, or anything in between.
Due to the way cerebral palsy affects the brain, it means that some people may have difficulties with speech, vision, pain, seizures, balance, hearing, breathing and many other things. However, it also means that you will probably never meet two people with the condition who are affected in the same way. I have always found this hard to comprehend and as a result, it’s been hard, at times, to find someone to whom I can truly relate. It can be an unpredictable condition.
What about after diagnosis? Once the health professionals know what they are dealing with and know whether the particular instance of cerebral palsy should be classed as mild, moderate or severe, this certainly does help them to direct the treatment or therapy which is available for that individual. On the other hand, I know from experience that cerebral palsy has a way of beating expectations, so can we actually predict how it will all turn out? After 18 years of getting to know my cerebral palsy, it can still confound me and I am learning things about my cerebral palsy daily; you could say it still has a lot to teach me.
I was diagnosed with cerebral palsy at the age of seven, but felt a bigger change between myself and my peers as I got older. When I started having growth spurts in my teens this would make my muscles even tighter which has led to a change in my walking pattern and my mobility in general. As a result of having cerebral palsy, I also have chronic pain and epilepsy and I am registered partially sighted. Over the years, I have found that cerebral palsy not only affects individuals differently, it can also affect people in different ways every day. Sometimes every hour can be different if you’re having “one of those days”.
So, even thought the diagnosis may stay the same day to day, the way it affects the body can vary. I understand that with any kind of disability we can have good and bad days, but are those who don’t have disabilities aware of this? When looking at how unpredictable it can be, it has the possibility to change every hour and even has the tendency of changing minute by minute. When contending with muscles and ligaments that aren’t on your side, it can be frustrating when they don’t respond, but can also be amazing when they finally do.
Having cerebral palsy can mean that it takes more effort to stay on my feet, even if I just have to think a little more about what I am doing. If I am concentrating on what my legs are doing, I don’t expect my hands to also know what they are doing; it’s one thing at a time with my body. However, a small thing for one person can be such a big achievement for others. I believe this is one of the most frustrating yet most beautiful things about living with a disability. We may have challenges to face but this means we have lots of small victories which we can, and should, be proud of. For example, some days I may pick up something with my left hand, while on other days this would just be foolish to attempt or even impossible. On a good day, certain muscles won’t be as tight and will therefore be more functional but on a bad day, they may be a lot tighter than normal. Trying to explain this can be difficult when you can’t see what is going on inside your own body. People often respond by saying something like “just relax”, to which I invariably reply: “trust me; I’m really trying”.
Even a change in temperature or having a cold can be enough to confuse our muscles, making our bodies function less effectively. On occasions, the unpredictability can come from movement being slightly delayed or even involuntary. A bad day may be a result of over doing things previously or may just come out of nowhere. Yet I know that it is possible to manage these bad days to a certain extent, if you have many years of practice or the right equipment to help you.
Using a chair
In attempt to control the constant changes in my body, I use a wheelchair on a part-time basis; this means that one day I can use my chair and the next I will be walking with my stick. Being able to use a wheelchair has allowed me to manage my energy levels and reduce pain, letting me function more effectively in everyday life when my cerebral palsy is presenting greater problems for me. It is very common for me to start the day walking around and then by the afternoon I could be using my wheelchair. Yes, this could illustrate how I have become tired over the course of the day, but could also be because my muscles have become tighter or keep giving way and putting me at risk of falling. Other people do not always understand why I only use a chair some of the time. Using a wheelchair may make it look like I am giving up or being lazy, when in fact it is the opposite. This is my way of managing my condition and allowing myself to live more fully. It’s something that even I can have trouble understanding, so I suppose it’s no surprise if others sometimes don’t get it.
See the person
Even though cerebral palsy can manifest itself in many different ways, it is important that people are able to see the individual and not just the disability. We are all unique individuals who are so much more than any condition or disability that we have. Even if we have many years of experience of living with our cerebral palsy, we can sometimes find it disheartening. Can you imagine being able to do something on Monday but finding it impossible on Tuesday? Unfortunately, cerebral palsy does not always cooperate on the days when we need it to. I think it is at these times when it is most frustrating.
I hope that I and others with cerebral palsy can use this frustration to help us learn more about how our condition affects our bodies, rather than as something to demotivate us from a task. Cerebral palsy may be unpredictable but we are adaptable.
Chloe Tear (pictured above) is a 19-year-old who is currently studying Psychology and Child Development at University. She has mild cerebral palsy (as a result of being born eight weeks early, weighing three pounds three ounces) which affects the left side of her body, as well as epilepsy, chronic pain and impaired vision.
At the age of 15, she started writing a blog to try to help raise awareness of her condition. She continues to publish Life as a Cerebral Palsy Student, at: