Monday, January 13, 2014

On the Other Side

I know, I know, I hardly ever write.
I will try to get more in the habit!
I've been thinking lately about my life and how CP plays a role.
And it feels like now, especially since I successfully transitioned out of my wheelchair and out of therapy, (can anyone else believe that actually happened??) CP has an increasingly diminished place in my life.
Oh sure, it still affects me, every day.
But the challenges have become so ordinary I hardly notice they are there.
Such as when I lose my balance several times a day- I just get back up and continue on, mostly without injury.
It's like I've moved on from having to fight with CP every day to just living, and handling CP related complications when they arise, and then contiuing on my way.
My disability doesn't dictate my life anymore.
When I was younger, it sure did. I couldn't do SO many things my siblings and friends did, like walking from the carpeted living room to the tile kitchen without landing on my face, and participating in gym class or a neighbourhood game of tag. And so much more.
I had surgery after surgery to deal with and recover from.
I had constant therapy requiring commutes to the city and more therapy at home.
I had adaptations and struggles at school.
So on and so forth. It was a constant feat of endurance just to get through each day.
And now?
I can go an entire day without even thinking about CP.
I've been known to forget there is anything different about me until I catch a strange look from someone  as I walk by.
There are days when I get super discouraged! Like when spasms will not stop or my friends go on a snowboarding trip and I stay behind.
But the majority of the time, I just live.
What does daily life look like for me now?
It looks like any other young adult's, with a little extra falling on my face at random intervals!
Adulthood with a disability is very different than childhood with a disability.
I feel like I have reached the other side, and I am standing there cheering for others as they climb their own mountains.
You can do this, you can. It might not feel that way, but you are far more capable than you realize!
Adulthood has its own set of challenges, and I'll write about them more.
Things like trying to find a job and having to factor in what I honestly can and cannot do, and the extra struggles of trying to convince potential employers that physical disability does not mean lack of ability to do a job well.
And things like the prospect of living independently and what needs to be factored into that.
Taking responsibility for my own body and being careful to have a healthy lifestyle so that physical issues do not get worse due to lack of health.
The challenges are certainly there, but things are different now.
I can look back and see how far I have come (which is incredibly far! From the little girl who was supposed to never do anything independently to almost entirely self sufficient!) and then look forward and face new challenges with the same amount of determination and spunk that helped me conquer all the others.
So, from this side of things, I'd like to encourage others who are fighting your way through to just keep at it! It will all be worth it. Don't forge to look around and enjoy the journey while you're at it. My Mom always told me to keep my chin up. Look the world in the face and tell them you won't be beaten, you will persevere. Life is beautiful, life with a disability is its own special form of amazing.
We can all do this, together.

Friday, December 27, 2013

Dreaming...


Sometimes it feels like a punch in the stomach.
When my siblings talk about going snowboarding like its no big deal.
When I hear the shouts and the sounds of skate blades on the ice of the rink just down my street, and my brother and sister talk about the hockey team they both play with.
When my sister talks about going for her run and how much stronger she's getting, as she wins awards for her skills in the military and holds her own among all the guys.
everything I can never do, never be.

I smile and join in the conversation, laugh when my sisters joke about me tumbling down a snow hill, tell stories of my dreams of figure skating and running in the Olympics.
How cute I was when I was little. Their smiles are kind, but underneath facts are the same- the impossibility of any of it.
I smile and laugh, it's funny after all.
My brother pats my shoulder: "It's ok, Funnylegs, someone's gotta burn the salad. And the cookies, and.." and everyone laughs. (this is a family joke at my expense- that has grown in legend since the day I put a plateful of leftovers in the microwave and there was salad on the plate, hidden behind the mashed potatoes.)
I laugh too, and get up to tidy the kitchen.

Tomorrow, two of my siblings will join friends and head down to the States to spend the day on snowy slopes, enjoying a kind of freedom I only dream about.
I do dream about it- I can almost feel the wind in my face and the thrill of racing down the hill..
I want to do the things they do so badly...
I want to run a mile just because, I want to strap on skis and fly down a hill.

I can't.
I can't, and it's not just because I don't try.
I feel like I don't belong so much of the time.
Like I'm just my family's little tagalong, who likes to stay home and tidy up and read.
I just want to go with them and join in.
I just wish I could.
I feel so trapped, so held back by my disability.
Sometimes I wish it was more severe, so I wouldn't really understand what I am missing out on.
I know that's silly, the blessings far outweigh the challenges.
But just once, I'd love to fly down a snow covered slope without a single worry.
Just one time.

It's impossible, but that doesn't stop me from dreaming of someday...
Someday when I won't be left behind as they all head out on another grand adventure.
I wish I could show them I am more capable than anyone knows.
I hope someday I'll be someone other than the "caboose" and the tagalong that everyone slows down for and offers a helping hand to.
I'm just dreaming.

Thursday, October 10, 2013

Falling and Frustration


I'm feeling discouraged today.
Today I fell on my way up a flight of stairs at school. 
I was carrying a textbook, and my backpack, so I couldn't catch myself.
I landed twisted, with all my weight on my left wrist, which is already injured and has been for years.
From, you guessed it, falling. And from heavy doors slamming on it during the years of trying to get around in my wheelchair.
The joint is really weak and has a permanent crack.
So, I held it gently the rest of the school day and put on my brace and sling when I got home.
I'm fairly proficient at managing one handed for as long as necessary each time this happens.This would have been no big deal for me.
I fall, I get hurt, I get up, I move on. It's life with CP. It's my normal. 
But when I tried to explain to people, they worried.
I ended up feeling guilty for getting hurt and for falling, and eventually wishing I hadn't said a word. 
The same thing happens when I excitedly share with others that I have managed without my wheelchair  at school this year. If I share that, and then so much as mention that sometimes I get tired or my legs hurt, they immediately ask why I would bother trying. 
I know that my friends and family genuinely care for me and want what's best for me.
But sometimes what they think is best only ends up limiting me.
Making me feel guilty for even having a disability because they worry for my safety and my opportunities in life.
I feel like I cannot be honest about the challenges because if I am, that is all they see.
All I want is for my family and friends to believe in me.
If I tell you I can do something, who are you to disagree?
I know they love me. But sometimes love means that it's ok to just let me try, and if I don't succeed, be there to catch me and offer me encouragement to get up and try again!
If you know me at all, you know that eventually, I will get back up. I will try again, with even more determination than I had before.
I'm just frustrated today. Tired of always having to prove myself, even to those who should be the ones supporting me no matter what.
I should have the freedom to share the challenges without being criticized for doing challenging things.
Life is a challenge, people!
And if you limit me to that which is safe, to your own ideas of what I should and should not do, if you decide what I am capable of, how will I grow?
I will be trapped. I will not be free to squeeze every drop out of this life and to explore, learn and build a reality beyond labels and predictions and pain.
I will not be free to just be me.
Here's the thing, my dear friends,
I am not a child any longer.
I've been through all the therapy and surgeries and everything that helped me get to this point.
Finally, I am realizing that I have the ability to decide what I want from this life.
To decide where I want to go and who I want to be.
And I need to ask one thing from you:
Please don't stop loving me and being supportive, I need you to make it through.
But as you do that, please do not limit me!
I am discovering that limitations can be pushed past, but I'm so afraid of disappointing you..
So please, believe in me.
Believe I can do more than even I know!
Believe I can accomplish great things!
Believe I will go to impossible places.
Believe that I am able, capable, of being free.
I need you to believe in me.

I'm reposting a poem I wrote last year- when frustrated about this exact thing.

I am tired of fighting
against the mistaken perceptions of this society.
I am tired of having to prove myself-
I am NOT my disability.
From now on I am letting go
of what you think of me.
I am going to live my life, and flourish
In my own definition of who I can be.
I am moving beyond limitations.
You have caged me in incapability
and low expectations-
But I hold the key.
And my own determination
Shall set me free.

Saturday, October 05, 2013

Feeling Victorious

It's been a month.
I've been walking independently everywhere for one month.
At first it was so hard.
I considered giving up, admitting defeat.
Going back to my wheelchair, to safety and comfort.
More than once I decided it wasn't worth it.
Yet here I am, still walking.
And I am stronger.
My physiotherapist noticed the improvements immediately and is slowly phasing me out of therapy. (Did anyone else just read that??? A few months ago I was begging for therapy, anything to help! That's huge!)
I no longer dread the mornings, getting out of bed and facing the day on my own two feet.
I no longer run out of breath walking from one class to the next, my legs aching for relief.
I am stronger!

Doctors told me to prepare for a life of chronic pain, that would only worsen over time.
They told me that my wheelchair was to be a lifelong companion.
My reality was needing help everywhere I went, always.
The Girl in the Wheelchair- that was me.
Except it is no longer!

It's been a month, a hard month, a tiring one.
I didn't think I would make it through- but I did!
And I will continue on, one step at a time toward the future.
Embracing life for all that it is along the way.
I feel like I conquered another mountain this month, and though I know there's an entire range ahead, I'll enjoy today.
Today, I am stronger than even I knew.
I am more capable than I gave myself credit for.
I am a conquerer, an overcomer.
Today I am victorious.

**P.S. with this little development, I clearly needed a name change! Still working on the design- stay tuned!

Friday, September 06, 2013

The Pursuit of Independence

Sorry it's been so quiet here lately... summer was beyond busy.
Working, volunteering at a summer camp in a leadership position five hours from home, and doing an online course for school.
Oh yeah, and being a bridesmaid in my dear friend's wedding!
On that note- I was so afraid I would fall. Or not be able to manage all the preparation and then spend the entire day on my feet. But I only tripped one time, did NOT fall, and managed just fine! This is HUGE.
That little victory, combined with an amazing summer as far as stamina, spasticity and pain goes, leads into my next point...

This morning, I am scared.
It is my first day of school, which is all right- I mean, it's my fourth year at the same University so nothing too huge is on the horizon.
Except that this year is different.

I decided, in light of the way my legs behaved this summer, to attempt school without a wheelchair for the first time since 8th grade.

Just typing that sentence makes my heart beat a little faster...
I decided this mid-summer, and was so excited.
And then last week my legs got really bad. The pain was insane.
I was put on so much medication, but nothing really helped for awhile. It took several days for the spasms and pain to settle down to a manageable level.
And when I got up this morning, way too early (it's still way too early..) I went downstairs and immediately felt the tightness of my muscles and the familiar twinges in my hips- and my heart sank.
My legs are the best in the morning. And they're not that great today..
So I am scared.

Just for background, I was able to walk independently at school (with leg braces) starting in grade 2 after recovery from major surgery and then breaking my femur.
Then in the 4th grade my legs began to hurt. A lot. I've talked about that before, but it basically led to using a manual chair or walker every now and then.
By the 6th grade, I was once again using my kaye walker full time. (at school)
And by the 8th grade I'd transitioned into a power chair because I am not very strong and my arms/hands are also affected, so that option made the most sense over a manual chair.
That's where I stayed for the next 8 years. It was safe. Comfortable. Easy to get around.

At home, I walk and can usually manage fine.
At school/anywhere lots of walking is required, I use my wheelchair.
Even in summer, I have a scooter.
But this summer, my scooter broke down.
Which would usually mean I'm up a creek without a paddle, but I decided to just try to manage.
And to my surprise, it went ok!

So this is the day.
And I am excited, because ultimately my goal is to transition back to walking everywhere independently.
When I imagine my future, when I dream about who I will become and where life will take me, my wheelchair doesn't even factor in.
I don't know if that's realistic, but I want it to be.

I don't know if I can do it. But I want to.
I told my sister what I was planning, and she said "Why would you do that to yourself?"
I don't know- because I want to know if I can.
My mom cautioned against it..
I just want to try.
I know it will be hard, and yes, I am frightened. (my school is huge!!! Nobody will move out of the way like they did for my wheelchair! I have class in a far away building and then ten minutes to get across campus before the next one starts. I'm still recovering from a bad spell. I work all evening immediately after returning from school. Etc.)
Anyone in their right mind will tell me just to  use my wheelchair and save the hassle and the pain and the weariness.

But I am also determined. And I'm known for my stubbornness, so I am going to try.
No matter what anyone says.
No matter what seems logical.
I think I can do it- and I want to prove that to myself and to others.
I just want to be independent.
I don't think anyone "able-bodied" (what does that even mean?? That's just it. I want to prove I am able. Capable.) will understand.

I WANT TO BE INDEPENDENT.
And I will fight to make that a reality.
We'll see what happens I guess.

I'll let you know how it goes!

Saturday, July 20, 2013

My Mount Everest

Recently I've had to start going to physiotherapy again, willingly.
I actually asked my doctor to refer me to a therapist.

Anyone who knows me is extremely surprised by this fact, because I despised therapy to the core of my being and got out of it as soon as I was given the choice, around age 12. I had some the world's most wonderful therapists and was blessed to receive therapy from the age of 1 until the day I quit at the very same place, the Rehabilitation Centre for Children. RCC is top notch and they offer services to so many kids who have so many different disabilities. My therapists actually cried, just sat down and wept for joy, the day I first took a few steps on my own. They loved me, and I loved them, but I detested therapy.

It was hard, painful work. And I didn't want to be different. Nobody else had to go to therapy so many times in a week. My siblings got to go to our friends' house while we made the long commute into the city. And I just wanted to be done. Eventually the therapists and my Mom decided I had gone as far as I could with their program, and I happily waved goodbye one last time.

But I have begun going again, because as I get older it gets increasingly hard to maintain those abilities I once worked so hard to gain.
And the other day, the therapist had me practice stepping up and down a few stairs.
As I completed the exercise, I remembered those long ago days in the Rehab Centre, as my PT worked with me hour after hour, trying to teach me how to step up a single stair.

Up and Down. Up and Down. Over and over and over.
There were many times I wanted to give up.
I couldn't do it.
I remember crying in frustration as the therapist guided my twisted, tight, uncooperative legs onto the step, as she patiently encouraged me and I tried and tried to just take that one little step.
Leg braces clunking, adapted straps pulling my legs until they pointed outward, walker waiting nearby.

My sisters would often be playing in the background, clambering over all the equipment, and I would catch a glimpse of them through the big mirror on the wall and realize yet again just how different our worlds were. (and still are)

I don't know how long it took, how many hours I spent on those wooden stairs, clutching the railings, willing my legs to move.
But I do know that one day, finally, I was able to manage the stair on my own.
And that day I conquered a mountain.
The cheering, hollering, celebratory spins in the air and happy tears echoing through that therapy room rivalled any Everest expedition reaching the summit.
I was victorious.
And suddenly all the hard work was entirely worth it.

I think of that day every time I climb the stairs to my bedroom at home.
Every time I am out in public and manage to step up a curb without falling.

One simple step.
One small victory.
One big impact.

Tuesday, June 04, 2013

A Lifelong Challenge

I am 8, sitting on the curb, watching my little brother learn to ride his bike for the first time.

All of my siblings cycle around, cheering and racing, so fast.

"Here, Jacquelyn, you can time us!" I smile, take the watch, time them.

They offer to race with me, and I climb onto my own bike, with its oversize training wheels and special flag, make my way down the street. They let me win, I know they do.

I don't want to be pitied, so I return to the curb, watching.

I am 12, skating at the neighbourhood rink. My friend offers to help me, but I cannot balance and fall many times.

Until I am cold and bruised and no closer to being able to skate.

So I head inside to warm up and watch out the window as she spins in endless circles on the ice.

Always watching.

I am 21, out camping with my friends.

They all bring their bikes along, ride down the long trials through the park.

Some sit by the fire, and I join them, but I watch the others pass by, wishing I could be with them.

The boys offer to teach me, and so we go around the circle and they hold me up, propel me forward.

I try, I laugh, it is fun.

But I cannot manage on my own. And eventually I return to the fire, watching.

Some go for a run and I start to say I will come along.. and then remember that I will hold them back.

So I stay silent, stay in my chair, smile and bid them farewell.

Always watching.

Sometimes the reality of "being disabled" seems like a long ago memory, long ago therapy and surgery, long unused equipment piled in the garage.
Just like the fading scars on my legs.
Sometimes I forget my limitations in light of all I can do.
Cerebral Palsy does not define my life the way it used to, when everything I did was monitored closely and my life planned around appointments, full of adaptations.

But sometimes, sometimes it hits me in the face all over again and I am forced to confront reality.

When I have to start physio again in order to maintain those abilities and skills I once fought so hard to gain.

When I cannot join my friends in certain activities, even though I really want to.

 When I cannot maintain a healthy weight because my muscles are working so hard.

Everybody says to eat more- but it doesn't matter how much I eat.

When I go to a public place and notice people staring as I pass by, always looking at my legs or my wheelchair, not at me.

When I have to learn to function despite constant pain.

There is nothing easy about having a disability, and though the challenges change as I do, the reality remains.

This is lifelong. I will always have to deal with limitations and appointments and make adaptations.

Sometimes, that is harder to face than I'm willing to admit.

But always, it is worth it, because life is amazing, challenges and all.

So I will continue on, keep fighting and learning and living.

Always worth it.