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The chaotic mosaic that makes up my Cerebral Palsy diagnosis

htlcyhtlcy Posts: 132Member Pioneering

Heather Lacey is an award-winning disability rights campaigner who regularly speaks on panels and at conferences relating to diversity and inclusion. She has worked with a variety of organisations - including AccessAble, Inclusive Minds, the BBC and Recruitment Industry Disability Initiative and during her time at an international law firm she has contributed to the planning and delivery of disability, mental health and LGBT+ events.

The Cerebral Palsy (CP) community is as varied as the condition itself; we’re a diverse bunch of people from all walks of life and with differing experiences and perspectives. CP exists on a spectrum of sorts, where no two people experience CP in the same way.

One thing that does unite us, is that Cerebral Palsy is a neurological condition. Due to this, it must come as no surprise that there are further differences when it comes not only to symptoms, but to secondary and related conditions.


I have a type of Cerebral Palsy called spastic hemiplegia, which essentially means that the muscles in half of my body are constantly tight and contracted, making some movements and coordination appear jerky and clumsy. With spasticity comes pain, potential bone deformities, overactive reflexes and contractures. Sometimes these symptoms contribute to the development of secondary conditions, as is the case for me.

I remember it vividly; staring at the photo that would impact on my life forever.

When the photo was taken, I was walking on a Floridian beach, soaking in the sunlight and feeling the sand between my toes. It had been a fairly busy couple of weeks, so I relished the opportunity to enjoy the balmy weather. However, when we got back to the hotel room, things didn’t seem so serene.

Staring at the photo mum had taken earlier on a small digital camera display, we noticed that something just didn’t look ‘quite right’. It was quite obvious that there was a large curve in the upper part of my spine, and my neck appeared to jut out at an unusual angle. Back on home soil, my mum dragged me to a doctor, where I reluctantly showed them my back. I spent the appointment red-faced and reticent, ashamed of the way it looked. Several hospital visits later, I was diagnosed with Scheuermann’s Kyphosis, an incurable spinal curvature that was likely to cause me pain and complications for a lifetime.

I was suddenly thrown into a world of spinal braces, pain management and intensive physiotherapy on top of my Cerebral Palsy treatment. I remember being told to wear both my resting night splint for my affected leg as well as my rigid Boston spinal brace. As an insecure teenager, I was overwhelmed when I realised I was discussing invasive surgery and changes to my lifestyle. The CP on its own was something I’d learnt to handle. It hadn’t been entirely smooth sailing, but it was familiar at least.

Like many others I’ve spoken with, the treatment of both conditions wasn’t done in tandem. Due to the type of Cerebral Palsy I have, it’s not necessarily obvious and for whatever reason the link between the two wasn’t made until I approached my consultant at an orthopaedic assessment. Unfortunately, as many would attest to, regular CP care tends to taper off once an individual reaches adulthood. And for some reason, although I now know the two are linked, no-one appeared to prepare my parents for the possibility that I’d develop further conditions related to the CP diagnosis.

If there’s one thing I’ve learnt about having CP, it is that no case is the same and no two days are the same. Each day comes with its own unpredictability, its own variant of pain, fatigue and mobility. As I’ve grown, I’ve learnt to try and embrace this body of mine, spinal curve, spasticity, pain, fatigue and everything in between. When I think back to that photo and my diagnosis, I feel sad. Sad that, despite all my body and brain’s achievements, I was ashamed of it. Ashamed of my cerebral palsy, and of the associated Scheuermann’s Kyphosis, things that are so intrinsic to everything I do and who I am. 

To any parents with newly diagnosed children, please know that despite the difficulties, CP and related conditions are not a hindrance to a fulfilling and quality life. I learnt to think of CP as a chaotic mosaic: even though the pieces may be different, and some edges rough, the tiles come together, creating a whole that is one coherent and beautiful piece.


Heather is a contributing writer for several publications including Able magazine and has published work in journals and online articles. She writes posts at no superhero and can be found as @nosuperheroblog on Twitter and Instagram.

Have you ever been embarrassed by condition? What advice would you give to a parent who had a child with your disability? Let us know in the comments below!

Replies

  • April2018momApril2018mom Posts: 1,618Member Disability Gamechanger
    This is a topic near and dear to me. I was just discussing this on Saturday with a friend. 
    These are my top tips for new families:

    1- Let out your emotions constructively. If you have a diary, write down your feelings in it or talk to your partner. Punch a pillow if that helps too! 
    2- Accept offers of help. I could not have survived without the numerous offers of practical help I received in the early days from caring friends and family members. Try to listen to your body as well. Forget what your child cannot do, and praise him/her for any achievements/milestones. Take care of yourself as much as possible. 
    3- Set goals for your child. Be positive and smile. Recently I sat down with one of my son's therapists and discussed goals for him for next year (this is also important). Take it easy however at first. Find a support group for friendship and understanding (this is so important!) especially in the beginning, seriously. Make friends (some of the friends I've met over the years were members of a online support group). 
    4- Make time for exercise. I am a member of my local council operated gym at a leisure centre. It helps me unwind. If it helps, I found this article https://www.familylives.org.uk/advice/your-family/special-educational-needs/advice-on-parenting-disabled-children/
  • Richard_ScopeRichard_Scope Posts: 1,612Administrator Scope community team
    @htlcy ;
    I am giving you a virtual standing ovation here! 

    Echoes of my personal experiences and that of many others I'm sure.
    Scope
    Specialist Information Officer - Cerebral Palsy
  • redchicken43redchicken43 Posts: 32Member Courageous
    edited September 11
    Truly an inspiration and agree that with this condition no two people are the same and for me not even two days are the same. No rhyme or reason, you just have to deal with it. But there is hope. When I was a child, people, not even my parents would talk about disability which, finally, finally seems to be changing. The good work that this young lady is doing and indeed scope are real game changers.
  • April2018momApril2018mom Posts: 1,618Member Disability Gamechanger
    I think the world is changing. My parents talked to me about my impairments and I do the same for my children. I’m 22 almost 23 now. I think that my generation made up of 18-22 year olds are much more aware than their older family members when it comes to disability etc. I grew up thinking disability was normal. My mom now works with physically disabled people as a qualified physical therapist. Before she taught physically disabled kids who were attending a mainstream elementary school in Philly, PA when I was a child for years. 
  • Adrian_ScopeAdrian_Scope Posts: 2,936Administrator Scope community team
    Fantastic read @htlcy. Thank you for sharing. :smile:
    Senior Online Community Officer
    Scope
  • AilsAils Posts: 567Community champion Pioneering
    This is a great guest blog @htlcy.  So insightful and inspiring.  I love the way you describe your CP as like a "chaotic mosaic", I totally get that with my own disability and this post will give hope to a lot of people.  Thanks for sharing it with us.  :smile:
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