Dear Future Self #NationalCPDay
"When you think you can't, revisit a previous triumph"
- Jack Canfield
Life with Cerebral Palsy isn't always easy and some days it gets a bit much, I hope by writing this it will show I'm human, I struggle but I also triumph.
N.B. I know its meant to be a blog and this is an essay :) Sue me!
This is a reflection of my experiences. I am sharing them in the hope that parents of children with CP will gain a greater insight into what their child might go through at some point.
For everyone reading with CP I think a lot of this will resonate with you, some of it will touch you, some of it will make you laugh. (For anyone reading without CP this might provide some insight)
P.S. I will no doubt ramble on about other things, I will leave in ramblings that are useful even if off-topic.
You are GOOD ENOUGH!
I wish I understood this earlier in life. Having CP is not a punishment from God, you didn't do anything wrong, no one hates you (I genuinely used to think I was cursed).
So what you shake.
So what you don't walk properly.
So what you don't walk at all.
So what you talk differently.
So what you don't talk at all.
So what you drop things (its bloody annoying though).
Let me be clear I am not disregarding anyone's symptoms or struggles, nor am I ignoring them. I am attempting to contextualise things and share my experience, I understand not everything I say will be the same for everyone.
In the grand scheme of things do any of these things matter?
I would argue that they matter far less than you think, we attribute too much time to things we can't control, and this is valuable time that could be spent living life...
Whether the situation is good or bad, never forget how blessed you are to be alive. (I know I haven't always felt this way, or always valued life but it is the greatest gift we have)
FOCUS on what you CAN do!
Easier said then done, its VERY easy when you have CP to get down about the things you can not do, the things you struggle with, the things you have to adapt or the things you wish you could do.
I know I used to say the word "CAN'T" (A LOT) growing up. Eventually I was banned from saying this word by my mum (and I think it was beaten out of me lol :)
If you repeatedly tell yourself you "can't" do something, you never will, even if you are capable of doing so. Just because something is difficult it does not mean it is unachievable or that you are incable.
It MAY take you slightly longer (sometimes a lot longer), you MAY have to adapt things slightly, you MAY require assistance, BUT usually there is a way to work things out!
FOCUS on what you CAN do! (And don't say "Can't !)
Dealing with the TOUGH days...
- Firstly it's ok to have them!
Non-palsy people have tough days too! All humans have tough days!
- Slow progress is still progress!
Keep working hard at it! It might not happen straight away but you'll get there - don't be in a rush to succeed
- Reflect on how far you've come!
Last month there was probably something you said you couldn't do/ struggled with - now your doing it, a year ago you were a completely different person. You've come a long way from where you started and you've got a long journey ahead!
- TALK to someone! Find someone you can talk to about how your feeling, keeping it inside only does long term damage. P.S. I know its difficult - talking/opening up [ Trust me I know - I'm an Asian/Caribbean male; we don't do talking and we don't do disability ;[
Everyone sees me as this "super-hero", "inspirational", "Role-model", I coach, I'm an athlete, I'm a student, I'm a therapist, I work 5 jobs, I'm a disability advocate BLAH BLAH BLAH
I'm HUMAN, I struggle like anyone else, I have dark days. Some days I don't want to get out of bed. Some days I can't get out of bed. Some days I do nothing. Some days I'm down about my shakes. Some days I'm down about mobility. Some days I'm down about my CP.
Parents... Let me talk to you for a minute
Growing up I wasn't really that aware of my CP at home. We never spoke about it. My parent's never treated me any differently - I did everything my brothers did to the best of my ability (not disability). There was no talk of Cerebral Palsy or disability.
Whilst this was a hugely positive experience on reflection I'm not sure if I would advise this to other parents.
The most harrowing day and some of the most horrible experiences I have faced and others I know have faced, is when they become aware of their CP/ disability by others in the outside world. Usually in the form of BULLYING. It sucks! Its something I wasn't prepared for and something I never expected. I think the bullying started around age 5, it didn't stop till after 16/17 years old and it did its damage.
I understand parents only want to protect their children. Its noble, honourable, loving and caring. BUT you might be doing your child a dis-service in the long-term. You need to talk about Cerebral Palsy at home, as there will come a time when your child is made aware of their CP outside in the wrong way.
Lessons I've learn't from therapy...
*Disclaimer - growing up we never had any therapists because we couldn't afford it. I am not a qualified physiotherapist and I'm not medically trained (thankfully otherwise I wouldn't be creative and innovative when it comes to long-term treatment for people with Cerebral Palsy)
The GREATEST therapist I had growing up was my great-grandmother - Big Nanny as I used to call her (God I MISS you), my grandmother - Little Nanny, and my parents.
When the doctors told my family I would never walk Big Nanny was Furious (I was told) she took it upon herself to help me. As she got older she instructed my Little Nanny and my parents. What they did defied medical experts, CP specialists, neurologists, doctors, physios and science!
P.S. the craziest thing which I still don't fully understand to this day... Big Nanny had no qualifications, she didn't read or write English and she left school at a young age. It was ALL instinct!
My experiences growing up have greatly shaped my philosophy now as a therapist, and given me a unique perspective. When you add in the knowledge of bio-mechanics/ nutrition and movement patterns of elite sport it is a unique cocktail.
"Under-qualified yet the most experienced"
- Paediatric Neurologist OCTC Ottawa Children's Hospital
Massage, Stretching, Mobility, Strengthening.
These are the 4 pillars of my philosophy when it comes to CP. (I don't have a "method" or a fancy name for it so I can't make money from it dammit lol!). I also can't explain everything as all of it is instinctual, based on feel and touch.
Some of the reasons I'm "good" (parents would say I'm better than good) at therapy is that my hands are hyper-sensitive because of the CP. I've lived with this condition for 21 years and experiment almost weekly on myself.
P.S. I will be the first to admit I don't know everything and I am always learning!
Here's some insights...
Parents/ families need to become therapists (you don't need qualifications - you MUST be willing to learn). No one sees your child more than you, no one knows your child better than you. The everyday nuances matter, seeing a therapist for 1hr a week/ 2hrs a week isn't going to make 'that much difference' compared to if your doing home therapy everyday.
Don't buy into the latest fancy new method/ machine. Unfortunately therapy is a business (I clearly don't charge enough as I'm still poor) and people will sell you anything. Wait until proper research has been carried out!
Trust your Instincts. They're usually right.
Everything and Everyone CAN be improved - its a matter of time/ the right intervention/ patience & persistence. NON-NEGOTIABLE I haven't met a single person I don't think can be improved - don't fall into the trap of comparing therapies, comparing your child to someone else's and comparing different therapists.
Light at the end of the tunnel...
Many years ago a young boy with CP fell over at Sports Day... That day there was lots of crying. Lots of self-doubt. Lots of anger. Lots of emotion.
I remember back then this was the worst day of my life. I didn't win the race, I wasn't even competitive.
I don't remember the exact words it was 12/13 years ago, but I remember the feeling, the sentiment and what my father told his sobbing son.
I remember my dad picking me up, dusting me off and wiping my tears away. Through my sobs I said something along the lines of "I'll never be good at anything".
What he said to me was POWERFUL. "Son there are many things you can do that other people can't, we are all unique, all talented, we shine at different things". (I'm paraphrasing)
At the time this was not what I wanted to hear, I'd lost the race, I felt worthless, angry at my CP and pissed off that I couldn't keep up with everyone.
That same boy that fell over... now he represents Great Britain in the Long Jump and is in the top 15 in the World.
Thank you for Listening.
I don't know if this was for me or for you, but I'm glad to have got some things off my chest.
Happy National Cerebral Palsy Awareness Day!