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‘Cured’ Of Cerebral Palsy After 50 Years

October 31, 2014

In yesterday’s Sun, (£) I read a story that really made me think about something I haven’t thought about for quite a while- the ‘cure’ debate.

When David Hayes, 58, was 5, he was diagnosed with Cerebral Palsy. He spent his life “struggling to walk and using wheelchairs.”

The article says that Mr Hayes  spent 15 years on the board of directors for Scope and four as national vice chairman. He retired in 2007 due to chronic pain.

Readers, Scope used to be the main UK charity for Cerebral Palsy. It is only very recently that they have expanded to supporting all disabilities. So the fact that Mr Hayes was working for this particular organisation tells me almost instantly that Cerebral Palsy was an important part of his life, a part of his life that he had clearly accepted.

Mr Hayes says in the article  “I never let the condition I thought I had hold me back.”

However, five years ago, Mr Hayes’ son, Philip, began feeling pain in his hip during cold weather. It was only then that doctors realised that David Hayes had been misdiagnosed, and that the condition he had was in fact a congenital deformity.

Readers, given Mr Hayes’ age today and the medical knowledge that was available in his childhood, doctors cannot be blamed for the misdiagnosis. That is far from the point of this post.

The point of this post is that the story made me think very hard about my own relationship with Cerebral Palsy- the condition I’ve had since birth.

Mr Hayes does not reveal, in the article, any emotional difficulty coming to terms with the misdiagnosis. He has had hip and knee replacements which, he says, have given him a new lease of life. He is now able to walk pain-free and says that finding out his condition could be cured was, for him, “a dream come true.”

Readers, I’m much younger than Mr Hayes, but his story and reaction brought a question I thought I’d forgotten back into my head. If I was put in Mr Hayes’ position tomorrow, told that I had been misdiagnosed and that, in fact, I had a condition that could be cured, what would I do?

After being in the constant company of Cerebral Palsy all my life, I know the condition inside out. I know its types, its levels. I even know most of its medical terms. Sometimes, I think I have more knowledge of Cerebral Palsy than most of the healthcare professionals I’ve met.

Besides, readers, all my closest friends are people with Cerebral Palsy, the parents and siblings of people with Cerebral Palsy, and healthcare professionals who treat Cerebral Palsy. If I lost Cerebral Palsy, I would lose the strongest connection I have with all of them.

Once before, a couple of years ago, I wrote here about whether I would want to be cured.

In that post, I wrote that if I was cured I would “buy a pair of high heels, take a driving test, pass it and drive a fast car. Then I would cure those of my friends who are still alive today and have long, clear, verbal conversations with them on long walks around a lovely park.”

But what if I was misdiagnosed? What if I had a whole new condition, maybe one that could be cured, or one that would allow me to drive or wear high heels?

The answer, readers, is that any new condition that doctors may correct my diagnosis to tomorrow would be a condition that I would know nothing about. And that, readers, by the way, includes a total cure, entry into what I call the ‘mainstream world.’

Any cure I’ve ever imagined before has been a cure that would also be available to my friends with CP. But would I want a misdiagnosis, which may be a cure from CP, but which would only be available to me? Would I want an exit, an ‘escape route’ from what I’ve known all my life?

The answer is that such a situation would take me into a whole new world. To some, entry into a whole new world may feel like a magic carpet ride. But after a lifelong relationship with Cerebral Palsy, I, for one, now know that I wouldn’t want to enter a whole new world- at the very least, not unless I could share it with my friends.

Cerebral Palsy is my world. It has been my world for so long now that if I lost it, I would lose a part of myself. A big, important part of myself.

Would my friends still want to know me if I left the world of Cerebral Palsy? I don’t know. They might not like the person I’d become given a driving license and a pair of high heels. I don’t know if I would like the person I’d become given a driving license and a pair of high heels.

Do I want to find out? That question opens a massive can of worms, readers. I know that I would find it very, very difficult now, almost impossible, to identify with another disability in the same way as I do with Cerebral Palsy. I think that I would personally face great emotional difficulties if I found out I was misdiagnosed.

The world of Cerebral Palsy is a strange one, readers. Maybe the specific worlds of every disability have this in common- I don’t know.

But in the world of Cerebral Palsy, at least, I have seen that if your family member dies and you choose to stay connected, you are welcomed with open arms. Yet I can clearly see there being a difference if a person with CP was misdiagnosed.

Misdiagnosis would instantly take a person out of the world of Cerebral Palsy. Maybe not out of the wider world of disability, but definitely out of the world of Cerebral Palsy.

If one of my friends was misdiagnosed, I would personally feel that we had lost the most important thing we had in common. As much as I would still love them as a person, I would feel that I could no longer share the most important part of myself with them.

Readers, for me personally, a part of me will always have Cerebral Palsy, no matter what cure or misdiagnosis may come along in my future. But would my friends from my world believe me if I told them “I may have been misdiagnosed, but I’ll always understand you?”

I don’t know the answer to that question, and I would hate it if the answer was no. So, after many struggles and rants, I have come to the conclusion that Mr Hayes can keep his dream come true. And while I very sincerely and honestly wish him very good luck, for me, personally, the situation that he now finds himself in would be a nightmare.






3 Comments leave one →
  1. October 31, 2014 11:09 am

    Reblogged this on sdbast.

  2. jeffrey davies permalink
    October 31, 2014 11:55 am

    you see David Hayes, 58 spent yrs on a charity board getting paid so money wasnt a problem to him but then there are those with a disabling bodies live how they can but to ask oneself whot if or how isnt a option we just get on with it fighting these devils who take away our monies so that atleast we can live but sadly being disabled one gets to grips with it but our government will tell you today you are cured but you and i now thats all we want in life is the small thing that others do or wear but atleast we have learned that abusing another is not on but this government does it daily another mans dream well it wont be yours or another mans poisen we just get to live our lives has best we can without the thrills of jeff3

  3. October 31, 2014 7:42 pm

    Being in pain and that pain cured is not a nightmare. There is nothing to fear but fear itself. If there is a cure you are not moving into a new world. You are exactly the same individual, with the same personality. You are not your illness / disability. That is just one aspect of you.

    The fear is lack of money to buy food and that has been caused by welfare reform and political propaganda that incites hatred and stereotypes people.

    Someone can be 60 or 65, disabled, sick, suffering benefit sanctions for months so no food money or declared fit to work when not a chance in hell if disabled / sick and over 50, your benefit taxed, forced onto Workfare when starving.

    The Greens have the answer to all this cruelty. So why hasn’t Labour had the idea first?

    The Greens in 2015 manifesto offer:
    – Citizen Income
    non-means tested

    With a supplment for a person living alone and for those who are disabled.

    To the amount of the basic tax allowance.

    The Greens also offer a bettered state pension, giving all the state pension, instead of abandoning huge numbers of women born from 1953 and men born from 1951 to

    As Labour is due to lose most Scottish Labour MPs, they cannot form a government in 2015. If they talked up The Greens in England and Wales, Labour have a coalition partner that could give a chance of hope to automatic basic income for all, without all the misinformation about those on benefit, the sneers if you can manage a few steps from a mobility scooter as if commiting criminal fraud when you never got any benefit and even if you did, you more than paid for benefit by the 90 per cent tax rate of the poorest from the 75 per cent of tax from indirect taxes and VAT, we all pay in or out of work.

    Labour could give The Greens sole power over welfare (replaced by CI) and pensions, in a coalition agreement.


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