Let's Talk About Cerebral Palsy and High Pain Tolerance

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8 minute read

I'm thirteen years old, when I visit a wave pool for the first time.

"Do you want to get in?"

I do.  I get help in.  My wheelchair remains near the edge of the pool.

The water is shallow.  Around my waist as I sit, perhaps a few inches deep.  I recline on my hands and enjoy the feeling of the water.

I have no context for this experience. I've grown up with plastic kiddie pools.  Water that stays where it's meant to stay.

[Tara, left, and Tonia, right, in a kiddie pool at age 6.]

Then, the waves start.

Rather than the gentle rocking I had anticipated, these are bigger waves.  Waves that can easily upend me if I'm not braced on my arms.  It's how I keep my balance.  The result is, I'm slammed into the cement multiple times at an uncontrolled speed.

It's all I can do to hold on.  To keep my hands in position and not let go.  

I think about chancing it and crawling the few feet to the side, but the bottom of the pool is so hard, and I have no way of knowing when the waves will hit.  I have a system that keeps me alive, right now.  If I try crawling and a wave tips me over, what then?

I want to get out, but I just got help in.  

Better to wait until help is offered again.

I hope someone offers me help out.

Waves are coming every 60 to 90 seconds.  They slam me into the cement over and over again.

I don't cry out.  I don't make any noise at all.

But that's not because it doesn't hurt.  It does.  Badly.

It's because pain is something that garners disgust.  It attracts blame: ("What did you do to yourself?")  And then, it's quickly brushed off and moved past.

I watch everyone else play in the deeper end.

Maybe they'll be done soon...

A little girl come to sit near me.  I'd like to talk to her, but I'm shy, and all my energy is being consumed by making sure these waves don't knock me over.

Waves continue to come.

It hurts to sit, and it hurts more when waves come and slam me.

An hour passes like this.  Maybe more.

Finally, everyone is done, and I get help out.

Relieved, I sit in my wheelchair, but wince and shift my weight forward abruptly at the pain that sitting causes -- even in my chair -- even on its cushion.

Bathing that night in the hotel bathroom is almost unbearable. I fold a washcloth into quarters and place it under me, so I can stand sitting in the tub.

Over the next few days, I look for reasons to stand up and walk around, even though my wheelchair is here to save my stamina.

Once home, I continue my washcloth-quartering in order to be able to tolerate bathing.  I do this for months because the pain is still present.

I accustom myself to it.

I don't know when it stops being unbearable.  Only that it does.

***

It's only as an adult that I've learned what actually happened to me in that wave pool:

I broke my tailbone.

Bruised tailbones heal in four weeks.  I was still tending mine in the fall and winter months after we returned from vacation.  Broken tailbones take two to four months to heal.

This kind of thing is often chalked up to 'high pain tolerance.'

The thing is -- as Tara has said before -- "Pain is not an alarm system for us, but something expected that we must tolerate."

I had been forced to tolerate intolerable pain since I was a five-day-old preemie.  When we are forced to withstand torture when most babies are still safely inside their mothers -- is it any wonder that I didn't say anything about my pain?

Because, of course it hurt.

But did it hurt like the medical trauma of my infancy?  Did it hurt like having 13 surgeries at once as a 10 year old?

No?

Then, I was probably good with just keeping quiet about it.

***

Here's what I need people to understand:

If medical professionals are going to recommend off-the-charts painful medical procedures to babies and children with CP, we are going to have a different relationship with pain.

If therapists encourage our grown-ups to ignore us when we cry and scream through painful range of motion exercises?  We are going to have a different relationship with pain.

We are going to stuff it down.  We're going to dissociate just to get through it.

Because we have no choice.

But that doesn't mean it doesn't hurt.  

It just means, we learned far too early that no one responds to us if we show that it does.

The stuff I have been through?  As a baby and as a child?  It would bring nondisabled people to their knees.

But I need you to realize what would have a nondisabled person screaming and writhing in pain, might only make me shift my weight and look for more opportunities to stand up, as it did when I was thirteen.

***

If you are the grown-up in a the life of a child with CP, I need you to know a few things: 

- Just because a kid with CP can't show their pain the way pain is traditionally shown, that does not mean we are not feeling any.  It doesn't necessarily mean they "got over that Botox really quickly."  Or that they are "resilient" or "tough."  It means they need you to pay attention to what they can show.

- Know that our pain scale is likely calibrated way higher than a nondisabled person's.  That means pain signals will be subtle.  Look for them.  Learn them, and tend to them in the same way you would a nondisabled kid with traditional pain signals.

- Your nonverbal child is still giving you signals.  So make a habit of checking them for injuries or pain.  Know there is always a reason when they cry (and that by crying, they are communicating with you.)

***

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