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...