My name is Corrie. I was born in Bristol on the 11th of March 1990. I was born at 28 weeks gestation, weighing 1 pound 10 ounces and on the day my sister started to walk. I was born by emergency c section which lead to a number of problems. One of which was that my lungs weren’t developed or mature enough to give enough oxygen to my brain. This lack of oxygen lead to one of the reasons I ended up being diagnosed with CP. Another reason was the fact that, (shortly after my lung collapsing), I suffered a brain bleed. Despite all of this occurring a brain scan was only carried out the day I was due to come home. This was the day the neurologist had told my parents, “She’ll be a cabbage, she won’t be able to feed or dress herself.” I can’t imagine what was going through my parent’s heads at that moment. They were just left with little ole me in the back of the car riding home.
My Nan and grandad weren’t having any of it. My dad and mum were in bits, tears, having to bring up a four year old, a 15 month year old and now a disabled daughter with an unexpected future and diagnosis shook them. But my nan, (stern Northerner that she is), hugged them and said. “Bloody ridiculous they’re stupid and don’t know what they’re talking about, she will have the same opportunities as everyone else.”
I had constant physiotherapy from the age of 3, thankfully, because of where I live and where I am from. Despite being discharged at 17 I naively thought this meant that my body would stay the same all my life. After all, I worked hard enough through the rehabilitation and operations I had been having what could go wrong? I can just move swiftly through life so long as I use my wheelchair and continue doing my physio. That’s what I thought, I wanted a life like everybody else and I worked damned hard for it. I deserved it, my family deserved it, I was positive enough throughout it all.
By the time I was 23 years old I still remained positive I was on my way away from home to study Occupational Therapy. My first taste of independence and an active social life was just around the corner, (or an hour and a half to be precise). I remember being sat on the floor packing my suitcase not believing this was actually happening. I also remember experiencing the familiar feelings of pain everywhere in my body, every muscle in my body. “Oh this is just because I’m tired,” I thought. “I will sleep it off during the journey tomorrow.”
When I finally arrived the pain still didn’t supress. But the adrenaline in me and the excitement kept me going. “I can’t believe I’m finally going to university, I can’t believe I’m here.”
1 year later my muscles gradually got worse. It wasn’t until I had physio when I graduated that the physiotherapist from outpatients had said that the stress and tiredness had caused me to have spasms and be constantly in pain and fatigue.
Before that however, the first year I came home from university, I was in tears. “Why is this happening? Who can I turn to now? Now I’m an adult?” My dad was shocked when he first saw me. “This must be bad,” I thought, “Dad doesn’t usually show he’s worried in front of me.”
It was my dad who made the decision to phone my paediatric physio who I had when I was 3 up to 17. “I can’t put this on her dad,” I said, “the poor lady has enough on her plate.” But dad refused and phoned her anyway.
Her response, “you need botox.” I thought it was as easy as that to get that ball rolling. I still had some positivity left in me after all. But, it took a whole year and a half more, it took until literally the end of university to get treatment and on the botox list. This was all because my university doctor refused to believe the diagnosis my physio (who had known me obviously a lot longer) had given. So I had to go through the whole rig moral of having months’ worth of ineffective physio as well as trying to get through placement, before my doctor could finally believe I needed botox in the first place.
Looking back, I don’t know how I managed to even graduate but I did. Long story short adulthood has left its scars (pain, fatigue and spasms) but I don’t regret my decisions. I had no idea, (like many young people with CP,) that this would happen as a result of my decisions. I have made many fond memories which will stay with me for life. I dated, I made lots of friends. For the first time since my teens I felt like I was being included and people just accepted me for me. It didn’t matter about my diagnosis I wasn’t judged on that.
There’s a lot more to my story then this but I hope that this has helped someone feel like they are not alone in the CP ‘bubble.’ Fatigue and pain are sadly common and that you will get through it. Unfortunately, (like most things CP has brought to many), you learn to accept and deal with it. Sometimes though, it’s difficult and you will cry and be angry. But this is fine and it’s fine to feel like that, it’s normal. (Ok, you probably shouldn’t take that advice from me, my dad will agree with me and say that I and my family are far from that!)
I feel that the acceptance process is like grief. You grieve for the body you wished you had. You grieve for the opportunities you wish you could have done. Saying this, I am so grateful for what I have been able to achieve. I’m especially grateful for my father and sister who have picked me up (sometimes even literally), through some really rough patches.