|Adam and I at our graduation, July 2010.|
Today I want to blog about the condition I was born with, left hemiplegia cerebral palsy. My inspiration behind this idea was that for my MSc degree, I'm currently writing a thesis on how cerebral palsy affects the self esteem and identity of adolescents, and it put me in a reflective mood. I don't often think about my condition, as I'm so used to having it, it's my normality.
Cerebral palsy is the most common cause of childhood physical disability, affecting as many as 1 child in 400. My type means that my left side is affected. It's effects mean that I can't use my left hand, I can walk, but I walk with a visible limp and walking is slow and tiring. People with CP use 5x more energy to move about than 'normal' people! My posture is also affected, I sit very slouched putting all my weight on the right side and I do have a curvature of the spine called kyphoscoliosis, this means my back is hunched over and curving to the right. This is caused by muscle imbalance between my left and right sides. My muscles on my left side are affected by something called 'spasticity' which basically means they're very tight and if they're not stretched out my joints can get stuck in contracture. Which usually needs surgery botox injections or stretching plaster casts to rectify the situation. I also have a leg length discrepancy which is apparently helpful for me I also have some quirky fingers on my left hand, they're double jointed so I can bend them right back, secretly I love this as it freaks people out. I also have reduced sensation on my left side. I can sit in front of the fire and not get feel myself burning. When I was small, I broke my left arm and it went undiagnosed for eleven days, rather scarily, I still had my regular physio and stretching during these days.
My hemiplegia also has unseen effects that if I'm honest with you, I find more difficult to cope with than the physical effects. I have anxiety (and now depression) that has been with me ever since I can remember. I also have visual perception issues. This one is tricky to explain. Basically I can't do things like read a map, following directions. I can't do certain things in maths like algebra or symmetry because my brain cannot translate the information. I'm still adapting to this one, as I only found out from talking to others with hemiplegia that this was related to the condition. I thought it was me just being stupid. I guess the unseen effects are harder to deal with because it's difficult to get people to understand, as it's invisible.
My hemiplegia was diagnosed at 9 months, after a relative noticed I wasn't using my left hand. It's not known what caused my hemiplegia. I only weighed 4lb 4oz at birth. I was a tricky delivery too - an emergency C- section, I also had to be resuscitated at birth a few times. However, one Dr suspects my CP is the result of a bleed on the brain when I was still in the womb, because of a seatbelt injury or something. I don't dwell on the cause because frankly it does not change the result. I do have a curious mind though, and would like to get a brain scan one day as I'd like to see how my brain is different.
I've had various treatments to help me cope with the physical effects of hemiplegia. I used to go for weekly physio from my diagnosis until I was 14. I've wore splints on my leg and my arm for most of my life. I have a real hit and miss relationship with them. Sometimes they help, other times not so much. I've had countless amounts of botox injections. This stuff had medical uses before the beauty industry waded in. I had amazing results the first time I had it in my hand (luckily I have general anaesthetic for the jabs!) my hand was straight for the first time in my life. Not ashamed to say I cried tears of happiness. Previously, my hand was completely bent under. However, I think I've now got an immunity to botox as the effects have lessened considerably.
I've had numerous operations to get rid of contractures. I've had my achilles tendon lengthened, with amazing results. I used to tip toe walk now I do not. I've had my calf muscle stretched - this was a failure. As an adult, I've had a wrist fusion done - my hand is completely straight now and does not bend at all. This surgery was the best decision I've ever made. I've had my bicep muscle lengthened, mostly to ease pain that my elbow contracture caused me. In February this year I had the tendons lengthened in my fingers and muscle removed from my thumb to stop it pulling inwards so much. Unfortunately my finger tendons might need re-lengthening as they're pretty determined to stay curled under. I'm now waiting on further surgery on my leg, I'm having my calf muscle re-lengthened and a tendon transfer to correct drop foot. I'm feeling pretty excited for this surgery, as it promises big results. All being well, I'll be free from splints forever! I've been warned by other people that the rehab is pretty brutal and long winded but I'm up for the challenge!
I think having hemiplegia has contributed considerably to who I am as a person. I've had no choice but to be a determined person. I might have a degree but my proudest moments in life are learning to swim and riding a bike without stabilisers. I was told by my physio these would be impossible. To be able to prove to people that they're wrong is a great feeling.
It's only in my adult years that I came to see myself as a person with a disability. I guess as a child I thought nothing of my parents helping me do stuff like cutting up my food, tying my shoe laces, doing my physio. I thought it was 'normal' it was only after I wanted to go to university that it hit home that I do need help everyday I suppose I took my Mum's help for granted. However talking to other people with hemiplegia, this seems a common trend. I guess you go through a journey with this condition, you develop as a person and the way you see yourself changes. I often get greeted with the word 'sorry' when I tell people I have CP. I can hand on heart say I've never wished my life was different. To me, it is completely normal not to be able to use a hand. If some miraculous surgery to restore it's use was available, I would not take it. I can't even explain the reason why I wouldn't take it because I don't know why.
my super straight arm after surgery last year.
Having hemiplegia is a constant learning curve. For the first time in my life I'm talking to people who have hemiplegia on the internet. I'm a proud member of the Hemihelp charity, and through them I've met people who are like me. This has helped me so much, as it can be quite socially isolating not knowing anyone who has the same medical condition. It's great to interact with parents of kids with hemiplegia and to help them understand how their kids feel. I'm also constantly learning new things about hemiplegia as it is a more complex condition than it appears on the surface.
I'd be lying if I said I didn't worry about how hemiplegia and my future fit together. I worry about how it impacts on my career choices, I don't think I'd be able to work full time due to the sheer exhaustion I'd experience. I want children, but I constantly think how I'd manage. I think it's only natural to worry though, and talking to others with Hemi definitely helps calm my fears.
I know I'll manage. When I was younger I could never have imagined me being in a relationship for six years, moving to Liverpool on my own. going to university, never mind studying for a Masters degree, so I guess the other things in life that I want will happen just as these things did! and as I said before hemiplegia is a journey, and it's great to reflect on the progress I've made, makes me worry far less about the future.
Thanks for reading.
Feel free to ask any questions.