Spasticity

I'm clumsy. I've always been clumsy. People are terrified of telling me to take a break because I do. I break cups, glasses, plates - you name it. They nicknamed me Zorba the Greek, one place I worked because of this. Talking of jobs - with me they've always been few and far between. nothing lasts long. I either get bored and leave or get sacked.

"Now look what you've done!" or "What happened to that order I gave you, to send out to Mr Harvey on the eighth?" (Well he didn't specify which month, did he?).

To say I was socially inept, is mildly true too. If I had a drink in my hand, I'd either drop it or spill it on someone.

"You clumsy idiot!" (Well yes, I know that - can you be more specific or add something else of interest to that point?).

I was never a great talker and got on better with kids and animals, than I ever did with adults or the human race altogether.

"Stop grimacing at me you nutter!" And other plaudits like this, would come my way. Talk? How could I? I could barely get my body to work, let alone my brain. Occasionally I'd let slip a terrible pun, to break the ice, in social situations. Every time I tried to be clever, an uncoordinated load of stumbling rubbish would come out.

"What do you mean, I-I-I, ig ag ooh?"

Ruthless Mickey takers at work or down the pub, would plough right into me as soon as I opened my mouth, so I shut up again or I'd burst into hysterical laughter as I found the joke funnier than anyone else.

"For Christ's sake shut up! The joke's over!"

Then there were the times I couldn't understand what anybody else said. It was like that Far Side cartoon - What you say and what a dog hears:-

"Blah, blah Rover. Rover blah, blah."

It was like I was hearing a foreign language or none at all.

"Cat got your tongue? Well it bloody should have - you don't use it enough, to need it!" (Ha-ha - very funny I thought but couldn't stand the humiliation of trying to actually say it).

Hugh and Milly Asian? Now that's a couple I know well! Yes, my literal sense of humour categorised me as autistic, even if nothing else did. Then there was phonetic spelling.

"That's not how you spell it Wright - get a dictionary!" ( Wright, wrong again! School, who needs it? If they want to spell it that way, why can't they say it that way too? It's all so jumbled up and illogical!).

There's some legend that says having Asperger's makes you a mathematical genius - not me. On the way to school I obsessively count the telephone poles, yes but I couldn't add up to save my life or yours, when in the classroom. Oh yes, the stories of us being selfish and self centred are true. We live in our own little world and you can't enter, even with a valid passport. Our borders are closed Mr Schickelgruber and nobody can come through without our express permission, so turn your tanks round and go home.

We are a strange mix of contradictions - egotistical, blunt in our speech, when we do open our mouths. Bloody minded and stubborn, yet fearing confrontation because in a fight, we wouldn't know when to stop - at least that is what we believe. It takes a hell of a lot to get us going and just as much to put the brakes on: Quick to anger, slow to cool down and come back into Earth orbit, if we don't miss it altogether. Innocent, vulnerable, trusting and blundering. It is this openness and honesty that turns us into the brainy creature we so often are. While others play about in the classroom or outside it in the playground, developing their social skills through interaction, we shut up, sit still and, look and learn. We shut them out and let the light of understanding in. Ordinary people connect with the outside world, through talk and physical contact - not us. We are geeky, clumsy and inappropriate in our comments and movements but we connect internally with ideas. They can dance, play football, cake on make up or make cup cakes but not us. Books are our only friends - failing that our computer screens are. We'd rather text than talk, write and read rather than speak - even to each other. We want to know how the universe works and maybe even one day, we'll find out how we work but not today, oh no, not today...

We know we are not liked - even feared and despised by some people or why attack us? (You only bully what you're afraid of - what challenges you to be what you are not or at least makes you think about it as a subject). Limited intelligence, criminality and defensiveness go together - leading to ignorance and suppression, by those wanting to shut out the light. Perpetual motion and emotion, keeps them on the move but not us. We don't want to leave home or even go out. We just want to collect our train numbers or plonk about on our computers in peace. Failing that we want to vegetate in front of the goggle box. We are not active participants in life. We are just passive viewers, along for the ride (Don't ask us to drive -we're not up to it or up for it either). We understand sound and motion go together (as with music and dance) but we are detached because we are observers of life, not activists (We don't move with the times because we are lumps of rock - orderly and controlled, not relaxed). We see only chaos and confusion in the world - danger we are not ready to face. Go for a swim? No thanks! You could drown and then there's all the pollution in the sea and God knows what in the rivers and swimming pools! We don't enjoy our lives, we study them for that great examination in the sky, when we all kick the bucket (Did we do well?). Live our lives? Maybe next time. Spontaneity is for wimps - we love routine. Order and discipline, that's us.

We're not in our bodies but always outside, looking in. This explains our odd gait as we're not in contact with life or society's natural rhythms.

We feel continually under stress because we are. Our twitching, tics and odd mannerisms show this. I need to crack my joints continually because of this (neck, between the shoulders, lower back (especially this point), ankles, knee caps, wrists, fingers and toes - by the way did I mention we're obsessive list makers?). This is why you'll see me and others like me, suddenly tilt their heads to one side or move our hands and feet into strange positions, for no apparent reason - we need to relieve our spasticity (Perhaps this is where 'Jerk' comes from as an insult?). It could explain the difficulty swallowing, indigestion, sensory sensitivity and allergies as well. Maybe too, it explains the dietary fads of eating nothing but a particular food - like crisps, beans, bread or biscuits, for months, even years on end (I've heard that we're carb eaters, avoiding protein and choking on fats).

Is it any wonder that we're stressed? Our attention to detail driven characters, fear of making mistakes, rigid personalities (love of tight clothing), passion for order, discipline and routine - all contribute to the pressure we feel under and put ourselves under. If we weren't so visually orientated, we probably wouldn't be so language impaired, continually swallowing nervously in social situations. This passivity and receptivity is probably what allows us to be so logical but it also leads to the need for space and the temper tantrums that follow, should we not get it and find we cannot cope: The sensory influx that drives us insane - the obsessive compulsion to wash our hands and protect ourselves from every other potential danger , turns us into an explosive powder keg of emotions, which blows up like a volcano every so often.

They say it is a male thing - this turning down and in, in curiosity, then up and out with answers and insights. This mental pressure is the same as physical pressure as in sex and other expressions, I believe. The physics of it is male concentration versus female dispersal of attention and energy. This is why males are more volatile and suspicious because of it (wound up and easily triggered into

Today, March 25, is National CP Awareness Day! I hope everyone has an amazing day & can acknowledge their own strength in the obstacles they are facing. To everyone who has CP, I’m here for you and you are not alone. Let’s spread awareness of all the beautiful things Cerebral Palsy can be.
Happy CP Awareness Day! 💚

#CerebralPalsy #Spasticity

I had to make a choice this summer. My choice was this: be in pain indefinitely or have orthopedic surgery. You can probably guess which one I chose.
I didn’t consider surgery a particularly fair choice, but one thing I have learned in my life is that life can be both beautiful and unpredictable—and unfair. Life isn’t fair. Spending the summer recovering isn’t fair.

I can acknowledge all of that, but then I have to move on. The surgery was logically my only option. It was the opportunity God gave me, and I felt I had to take it.

I was put to sleep for three hours and when I woke up, my legs were different.

I was unnerved. I had a rod and screws in my leg and my femur—the biggest, longest bone in the body—was broken, albeit intentionally. For more than fourteen years, my femur caused my leg to turn the wrong way. Now it was like I had a new start.

As I lay in the hospital bed, my mom pointed out that my feet were turned outward for the first time. I think she almost cried. I might have cried, too, but I was too loopy. The outward rotation of my left foot, specifically, meant that my hips had less pressure, which was one of the goals of the surgery.

Since the surgery, I have had many ups and downs. I had been home from the hospital for two days when I started having chills and constant spasms. My parents helped me to my bed and I eventually fell asleep. Generally, sleeping after the surgery has been hard. I never found it easy to fall asleep to begin with, but after surgery, the pain and spasms kept me awake. I slept during the day because the medicine was very strong and made me drowsy. The pain would move from my hip, settle in my femur, and travel to my shin. Despite the pain, I had some amazing accomplishments after surgery, too.

The day after my femoral osteotomy, I started using a walker. I noticed that as I walked, my left foot would either straighten or turn outward, not inward like it used to. The lengthening of my abductors helped to drastically widen my stance as I walked. I had walked the same way for years—knees bent, left foot inward, narrow stance. Now I wouldn’t trip myself up because of my rotated femur and lengthened abductors. I thought that was amazing!

However, for the first few weeks of my recovery, my left knee refused to bend. I couldn’t tell that my knee wasn’t bending but found out when I began intensive physical therapy. I also couldn’t determine the direction of my feet—whether they were turned in or out, or straight. The natural way my left foot was for so long was turned inward. Gradually, I guess my body was trained that my left foot’s crookedness was actually straight. My inability to determine the direction of my limbs is neurological. My physical therapists hope this will get better as I continue to relearn how to walk.

The loss of independence that the surgery caused has been really difficult for me, even though it’s temporary. I can’t walk for long periods of time. The surgery and sharp femur pain wiped out my stamina and endurance. School starts in three weeks, and I’m not sure if I will be able to go to school without an aide or pull my roller bag by myself.

I don’t trust myself anymore. When I walk, I feel like I’m losing control—going too fast, locking my knees, hyperextending. I’m constantly paranoid that the rod slipped out of place and that my left foot is turning in. It’s exhausting, and I often wonder if I will ever trust my legs. I wish that the muscles in my legs would learn to work together soon.

I never really had control of my left leg before. It often felt like my left leg would cave in on me. And even back then, my right leg had to support most of my weight. My struggles with my left leg are not my body’s fault. But my left leg has never really felt like it’s mine. Now, especially, my leg feels like it belongs to someone else.

When all the bandages came off of my incisions, I remember sitting in the bathtub one night, tracing a few of the scars. I was thinking that I’d had chronic pain in my hip, especially the left, for so long, and now I had a visual representation. I looked at all the scars and felt, honestly, that my legs were so flawed. That had to be why I’d needed so much surgery. I looked at my left leg and thought that it was so ugly, inside and out. In reality, my left leg was doing the best it could, using the muscles that had the least amount of spasticity. My left leg has the help it needed now.

The pain has been severe and intense since I’ve had surgery. My physical therapist has pushed me to achieve what I can, and I’m so grateful for his help. However, there were some times I had some emotions to let out during PT appointments. During one appointment, he laid me on my stomach and pushed on my quadricep. I nearly cried. I struggle with telling my physical therapist that I’m in pain because I feel like I’m complaining. Throughout my recovery experience, I have had to learn to ask for help.

I have had to use a wheelchair to go to appointments with my doctors and to physical therapy. It is emotionally draining, even though my use of a wheelchair is temporary. I feel like everyone stares at me. I am too short to see much of anything when I sit in the wheelchair. My legs stiffen and it is very painful to sit in the wheelchair for an extended amount of time. Overall, much of my recovery process has been emotional, in good ways and bad.

I have thought so many times during this surgery that one type of pain was swapped for another. My chronic pain was replaced by a new bone-deep, intense pain. I wasn’t sleeping well. I was struggling to walk. At night, I was exhausted. I knew the surgery had benefits. So that’s what I’ve tried to focus on.

A few weeks after my surgery, I was able to stand up from a chair without using my hands—something I couldn’t do even before the surgery. I was shocked and so, so happy. It was emotional for me. My eyes welled up and I smiled at myself in the mirror. I had never done something like this before. As I did it again, I think that’s when I fully realized that the surgery was worth it. The action was so unnatural and new that I kind of wondered if my legs belonged to a stranger.

On the stairs, my feet don’t turn in anymore. My feet would dramatically turn inward, which was a major fall risk. My physical therapist told me in the past that my feet would never be straight while climbing stairs. He thought it was impossible. My femoral osteotomy helped me achieve something that was impossible for me.

I use more muscles than I did before. There is a muscle near my shin that has been activated lately. A few days ago I told my mom that my shin was hurting, but that it wasn’t a shin splint. Turns out, I had started to use a muscle that I had never used before called the anterior tibia. I was stunned. It took me my entire life to start to use one of the muscles in my body. Because I always dragged my left foot, the muscle that lifts the foot from the ground during a gait pattern had never been used. I felt like I had just discovered that more was wrong with me than I ever realized, but then I reflected that the surgery has given me a chance to do things I never could before.

So yes, the pain of a femoral osteotomy is miserable at times. Yes, I can’t really trust my legs yet and have to relearn how to walk. But having surgery has shown me so many small miracles. My legs finally have the help they need. I can do so many things that aren’t impossible anymore.

#CerebralPalsy #Recovery