Out on a limb - Me, Myself & Cerebral Palsy
NHS Number 45382 born with cross lateral Cerebral Palsy resulting in left hand paralysis, hearing loss and speech impediment (how I was referred to by medical professionals, not Emma-Jane Frost a person). Even before my birth the health professionals involved in my delivery were far from accommodating, I was breach for 3 weeks, and ended up being distressed and delivered by emergency C-section 6 weeks premature weighing 4lbs. Both mum and I were resuscitated and so began the ongoing relationship with a multitude of agencies. I wasn't officially diagnosed with CP until 10 months in. From that first label I moved between pediatricians’, physio, Speech and Language therapy, educational psychologists the list was endless and not particularly enjoyable. Life was a stream of prodding and pulling and my parents being told I wouldn't walk, talk or amount to much. But here I am, walking, talking and with a few letters after my name to boot!
I learnt early on that I needed to be both resilient and the "expert". So endeared my GP who up skilled me in the medical jargon of my condition and together with support from my Mum we took on the education and health system. This entailed 3 hours of exercise per day, speech therapy and fighting on my mum's behalf to get me into mainstream school. Schooling was a challenge as unfortunately with a speech impediment and calipers I was labelled by an educational psychologist as intellectually challenged. 10 A-C GCSE's, 3 A ‘Level’s and a couple of degrees later I think that might be a moot point.
I regard myself as one of lucky 150 a month to be born with Cerebral Palsy. I say lucky because despite the restrictions and the lifetime of bullying, hospitals, doctors and other therapists, I have a determination to push forward and I do not take life for granted. I have benefited from a very normal life School, Universities, travel, employment, relationships, marriage and divorce – so all quite normal! The physical aspect I have adapted to and modified accordingly – my speech still troubles me. There is one aspect of Cerebral Palsy I do struggle with which is the emotions. They can be extreme, and I have often thought I’m oversensitive and in some cases I can be. But I remember my GP explaining that to make my body work it takes twice the energy. Because of this fatigue is a running theme which in turn equates to my emotions sometimes being hijacked and at times irrational due to a slight delay in processing thus sometimes my emotions can be a bit off point. I know I hate to fail but more than that I always wanted to be liked for me, not because of the Cerebral Palsy.
For me life with Cerebral Palsy has been varied but there isn't much I don't know about any of my issues. I just want to be viewed as an individual and enabled to reach decisions, collaborate and support where appropriate to self-manage and be confident interventions when required will not lose sight of me as Emma. I'm not just a number I’m a very normal sometimes pain in the proverbial person – just ask my partner!