Karen Rowe, a freelance writer from Cornwall, shares a powerful story about spending almost four decades with an undiagnosed condition, to later discover she’s living with the neurological condition cerebral palsy. She highlights the challenges faced growing up with tight, painful limbs, multiple medical procedures, battling barriers in education and employment, and how a routine appointment changed everything for her and brought her the understanding she needed to move forward.
Growing up with an undiagnosed impairment
November 13th, 1970. A significant day for me, my birthday. However, my due date was February. I weighed 2lb 11oz and was swiftly placed in an incubator. I was not expected to live. My parents told me that one day, I pulled the tubes from my nose and cried to be fed.
I had survived, clearly the best ending to any story. However, when I walked, my heels were elevated. Concerns over my ability to remain walking resulted in surgery to lengthen my Achilles tendons. The picture and feel of the white casts which enveloped both legs up to the knees are still vivid. It was 1976, one of the hottest summers on record.
When they recast my plaster, several items that failed as itch relief fell out, small toys, pencils and a ruler. My feet in-toed, and more so on the left. I tripped over things often, and my legs always held tension, but I was mobile.
Primary school was like a cosy fire. Secondary, a blazing inferno. The verbal taunts started. I was called retard. It impacted my confidence and mental health. I had counselling and changed schools. It still happened, but I made friends too. It set my feeling awkward about my differences compared to others.
From my 20’s, I got back pain. Certain occupations exacerbated it. Like being stationary. I changed jobs three times, and with the latter one, I dropped to three alternate days. Despite my efforts, my back is still hyperextended three times in as many years. It was excruciating. I couldn’t sit. I ate standing up. My legs were tight. The bed was a mattress on the floor.
It took three months to recover each time, even then, I was exhausted and extremely low, due to pain, and would fall asleep in a side room at work doing exercises for my back. The fourth time it happened, I returned a year later to implement my medical retirement meeting. I was 37.
Discovering cerebral palsy in adulthood
October 2010. I sat in a chair. A practitioner was covering my lower legs, once again with plaster of Paris. This was so I could have orthotic casts made. At the start, I was sort of pleased because they were finally taking notice.
I always asked GPs and physio’s wether the problem stemmed from my legs, as I had them operated on. At first, they all said no, and what made it worse was that the paper notes from my childhood GP had been lost.
I started talking about my leg op. What he said next shocked me: “Well, it’s like this with CP.”
“What’s CP I asked. Feeling alarmed.
“Cerebral palsy. You really don’t know you have it?”
The rest of the appointment was a blur, as I was heavily internalising.
I got home and feverishly searched the web. It shockingly fell into place. Caused by birth trauma and low birth weight, plus I had a blood transfusion as I was jaundiced when born. I had, unfortunately, lost both my parents by then. I knew they wouldn’t have kept this from me.
I always told people who were polite enough to ask me about my feet that it was due to being premature. I just presumed it was physical, but it was neurological.
I was surprised by the diversity of CP. Classification is given by the number of limbs affected. Two in my case. So I had Diplegia, which was spastic due to tightness. It also varied, one person with my type may never walk, another could climb stairs without handrails, which I never could.
I cried a lot. One of my friends tried to help by stating I was dealing with it already. Did it really matter?
Answer: Yes. My grief turned to anger. I am proactive. It wouldn’t have helped me, and I get why doctors say it isn’t progressive. However, it should be common knowledge that you may get fatigue and pain increase as you age.
An appointment with a neurologist confirmed this process was normal for the condition. I could run, but now I walk with a stick and am a part-time wheelchair user. Also, I returned to education at 28 and gained a degree. I would still have done it, but my subject choice would have been different, one I could have possibly done self-employed. It was wasted. It would have resulted in a well-paid, interesting career within the NHS.
The mental impact of living with cerebral palsy
My mental health declined. Even at my worst, I always believed I would get better. It was compacted further by bereavement, isolation and battles with the DWP. When my alcohol tolerance levels became scary, I sought professional help.
In 2017, I attended a self-management course for people with long-term conditions (my group still meets for coffee), and I became a volunteer tutor. Last year, I was offered a 10hr contract as online support, but unfortunately, the NHS shut the course. I felt like I had lost my job all over again.
Worried that my mental health would slip, I joined a community course led by Cornwall Mind. This has led to an open podcast group, which I am enjoying.
Other aspects I discovered during research told me that certain traits I had were possibly due to CP, and were not just motor function, such as dyslexia, walking into doorframes, or being unable to judge distance and speed. I bite my inner mouth and can’t cut a sandwich without it looking massacred. There is a 50% increase in having depression and anxiety too. It offered some relief to know they were less me and a result of a condition.
The positive aspects of living with cerebral palsy
Positives of my altered life path are that I have met amazing people who support and understand. I also offer advice on CP university studies.
I have sought counselling numerous times, and learnt mindfulness and meditation. Found accessible, bench Pilates. I consistently write, both stories and poems. This isn’t CP. This is definitely me.
Have you had a similar experience of growing up with an undiagnosed impairment and eventually finding out the truth of your condition in adulthood? Let us know in the comments box, on social media or contact us to share your personal story.