Medical Trauma and CP

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"So, you have a little bit of White Coat Syndrome..."

"Well, I don't like going to the doctor either, but..."

These sentiments and more are the types of things I hear when I mention I have medical trauma.  But medical trauma is more than just not liking going to the doctor.

Medical trauma is what it sounds like: trauma that stems from enduring medical procedures, illness or prolonged hospital stays.  Pediatric medical traumatic stress is a child's response to an invasive or frightening treatment and / or medical procedures.

There aren't a lot of resources out there that discuss medical trauma and CP.  So, as I do, when I can't find information...I'm creating it.

Let me say upfront that I am not a medical expert.  What I am is a survivor of years of medical trauma.  Medical trauma that was -- yes, I'll say it -- largely unnecessary.

In my case?  Even the necessary was torture.

***

These are the pieces of my history put together myself:  

When I was a five-day-old newborn, I endured heart surgery without anesthesia.

At four months old, I had two throat surgeries, a week apart -- and again -- without anesthesia.

This is because, prior to 1987, premature babies only given paralytics for major surgery.  We were not anesthetized because it was believed we could not feel pain.  So, I was operated on three times, while fully conscious, but unable to move.

My family was two and a half hours away and received updates by phone.  I had no one waiting for me.  After that first surgery, it was eight more days before anyone could come and hold my hand.

[Image: Tonia, 13 days old -- 8 days after major heart surgery.  Part of the large bandage is visible on her back.]

These are only the procedures I had that I'm aware of.

There are likely more "less invasive" interventions that were also given without anesthetic, like bronchoscopies, which I had more than once as a baby.

Yes, I needed these procedures to stay alive, but the medical trauma I endured?  

That's unparalleled.

***

I lived in the NICU for the first 11 months of my life.  

I was surrounded by monitors, sounds of distress, and I endured unimaginable pain and suffering.  My family lived two hours away and could only visit once a week.  I only saw my twin sister a few times over eight months after she was released.

The affects of these early traumas were evident as early as two years old, when I apparently fought an eye doctor so hard he could not complete the tests he intended to run.  In his words, I was "uncooperative."

But in mine?

I was traumatized.

***

And that was just the beginning.  

I endured five different non-lifesaving surgeries between the ages of three and eleven years old.  

These surgeries were rarely singular orthopedic events, and more often, I had multiple operations at once: four incisions at once when I was three years old.  Thirteen incisions at once when I was ten years old.  Two more at once when I was eleven years old.  

In total, my surgical scars number more than twenty.  And at a few of those locations, I've been operated on more than once.  (One did not leave a visible scar at all, but did leave lasting trauma.)

***

Here's the thing I need you to hear: most of the time?  I didn't act traditionally traumatized.  I went along with surgeries because I had no choice.  I stopped crying when I had bloodwork done by the time I was three.  Instead of recognizing this lack of reaction as trauma, I was called "brave" or "good."

But I was neither.

I was dissociating.  Coping in the only way I could, because I was enduring these things against my will.

Just because you don't see symptoms does not mean we are not suffering immensely.

And when I could not dissociate?  My pain and trauma did not matter...because the doctor's orders mattered more.

Related: The Bed Thing

***

People with CP -- even adults -- are forced into nonconsensual, non-lifesaving medical interventions all the time.  

In December of 2016, Just after speaking out about experiencing a super unsafe inaccessible home, a family member in the medical community suggested that I get PT and a Baclofen pump.  

I nearly blacked out at the words. 

After my entire childhood was marked by unnecessary surgeries, here was another being suggested.  All so nondisabled members of my family could avoid providing basic access and safety features in their house.

The trauma it brought on was real.  

And the pain of those words...I can't explain how it feels to be brave enough to tell someone "I need accommodations," and to hear, in essence, "I need you to suffer through unimaginable pain instead."

***

It's been said here before, but I think it bears repeating: nondisabled people get medical intervention for the most part when they choose it.  Because it's something they want for themselves for some reason, or it will help their pain.  (They even choose Botox for themselves, but they don't get it in super tense muscles because that would be even more painful and ludicrous -- and they wouldn't insist on it for their nondisabled child!)

But as disabled people, we are often not given this basic right.  

I have friends who were forced into getting Botox injections as kids (sometimes without anesthesia), some acquaintances who still feel pressured to go along with their parents' wishes for them to get Botox as an adult.

It is traumatizing.

And we don't just get over it.

Related: Why 'Just Forget and Move On' Is Dangerous Advice When Discussing Trauma and Disability

No nondisabled adult would choose to put themselves or their nondisabled 3 year old, or 10 year old through multiple-incision surgeries.  Especially if they didn't need such drastic medical intervention to survive.

Before all my non-lifesaving surgeries, I felt fine.  I wasn't in any pain at all.  I felt normal.

But instead of being able to carry on being a kid and playing with my siblings, I went through the trauma of anesthesia, the torture of recovery and the abuse of rehab / therapy.  All for what?  So I could reach some nondisabled ideal of what's normal?

It wasn't necessary.

***

This is why you'll see me react so strongly to nondisabled parents who share about their kid with CP going through unnecessary medical interventions.  Because whether it's the latest and greatest promise from a doctor that your kid will get "new legs" after the surgery, or will somehow not need previously necessary mobility aids.

Even treatments given to reduce spasticity and related pain (Botox injections) seem barbaric to me when chosen by a nondisabled parent for their disabled child.  Not the least of which because there are non-invasive pain relief options available.  There are things to try that may actually soothe tense muscles instead of causing unimaginable pain.  (Like gentle massage.  Like a warm bath.  Like topical pain relief creams.)

The younger the child is, the greater my fear is for them.

Because, contrary to popular opinion?  The younger a child is, the greater impact trauma has on them.  (See What Happened to You? by Dr. Bruce Perry and Oprah Winfrey for more.)

***

It's June, 2021.  

I've decided to check out the musical Next to Normal.

I've been hesitant about it for a while, but finally decided to give it a try, knowing that it shares the same writer as my current focused interest 13 Reasons Why (on Netflix).

Maybe fifteen minutes in, I start noticing discomfort in my arm.  It's the kind of pain I traditionally have on the CP side of my body, but this exists in my only unaffected limb.  From shoulder blade to wrist, it's locked up with tension.  No matter how I position it, there's pain.

I leave the room a couple of times to try different pain relief options -- and they barely make a dent.

Tara asks, "Should we pause it?" several times during our viewing but I want to see it, and I know if I stop early, I won't finish it.  At this early stage, I don't think about trauma.  Yes, I don't like the medical content, but I'm a Grey's Anatomy fan, so clearly I can handle this...right?

There's significant invasive, intensive medical trauma depicted in this musical and alluded to throughout.  I cope by being out of the room for the duration of the most intense scenes and by heeding Tara's warnings about what's coming up next.

I insist we keep watching.  Tara's already seen it.  I want to share this with her and another friend, who has sung the musical's praises for months.

I watch the entire thing -- all two hours and three minutes of it.

It's afterward, when discussing it with a friend, when I realize I am triggered.

Did you like it? they ask, and I stall.

I actually wanted to hear why you like it.

(It's not a lie.  I do.  I love hearing about what people in my life enjoy.)  

As they share, I'm aware of tension blocking my throat.  Tension all through my body, channeled down that one arm.

Around the same time, Tara asks, "What did you think?"

And when I try to answer, I'm stunned to find myself close to tears:

"I....um....I can see why you liked it...  The music was really good.  I just...  I mean...  I don't know how to..."

My words are gone.  There's actual tension blocking them, but even behind the tension, there is nothing.  

I have no words.

It's like they vanish entirely.

"Was it kinda heavy?" Tara asks, giving me some.

"Yeah," I agree.  "It was kinda heavy."

Meanwhile, I tell our friend, in response to their question about if I liked it:

Honestly?  It's a little too medical for me to feel safe watching.  I def feel like I'm a little triggered.

The rest of the night, friends ask me how I am, and I can't speak.  Their well-meaning questions, ("Want to share more?") trigger even more tension, even more overwhelm and feeling stuck and powerless.  

Because I can't share more.  

I respond with an abrupt and ineloquent, Like, literally no.

Tara spends the rest of the night telling me, "I miss you," because I can't talk to her.  I want to.  But I can't.  The only chance I have for words to come is if I'm sufficiently distracted.

(Somehow, too, I persist in feeling left out of the conversation that Tara and our friend are having about the musical.  Even though I know it's triggering me, I still hate feeling left out.)

I comfort myself drawing Joanna, the monitor lizard from The Rescuer's Down Under (because I'm in my 'lizard brain.'  A traumatized brain -- like a lizard's -- can't tell if a trauma is happening right now, or decades ago.)

Eighteen hours later, I still go silent -- tense and wordless -- when asked if I'm okay after this trigger.  I insist I'm fine as long as we don't talk about it.

Twenty-four hours later, I can finally share the barest details:

And it sounds silly: 

"My preverbal medical trauma was triggered watching a musical."

It sounds silly, but it isn't.

It doesn't escape me that it was June almost four decades ago when I had that heart surgery as a five-day-old preemie.  That the tension is localized around my left shoulder blade, the same place my scar from that operation starts.  Ten inches long and wrapping around me high on my left side.

I don't have a conscious memory of this surgery -- of this torture -- but my body carries it.

And every once in a while, it emerges, a tense and wordless thing.  A wall of fear.  An enforced stillness that I can't surmount.  I just have to ride it out, like a passenger in my own mind, in my own body.

I can't even wrap my mind around how to comfort the baby I was, because the trauma is still so fresh.

***

If you have read this far, and now you're thinking: "Well, I would never do that," I encourage you to pause.

Because while I'm grateful that you realize how off-the-charts painful surgery without anesthesia would be, I want you to recognize that children with CP still endure this in some parts of the world.  

It's not the ancient history we would like it to be.

Both in the US and abroad, kids and adults with CP are forced to go through unbelievably painful Botox injections without anesthesia.  From what I understand, this usually occurs because of a combination of a misunderstanding on the doctor's part, when a parent requests a general anesthetic for their child.

There's also exhaustion and desperation on the parent's part because maybe they have just called out of work and rearranged their entire schedule (and their significant other's and that of more than one kid) to get this done. And everyone's here and it was so hard to get an appointment in the first place...

They are convinced by the medical community (who is there to fix and heal) that this really is the best option, so an impossible choice is made.

But even if it only happens one time, we suffer.

We suffer because we are still dehumanized in medical spaces.  While the general population doesn't even get a vaccine without being told "relax your arm" we are put through torturous procedures -- focused on places we can't relax.

I need you to know that even if you would never do what you have read about here, parents are still told to ignore when their baby with CP cries in that new gait trainer, or throughout that new series of stretches because the end justifies the means.

I need you to know that children with CP are still threatened with surgery at routine doctor's appointments with their parent right there in the room.  As a consequence for not stretching.  For growing (which can increase spasticity, despite dedicated stretching.)

Maybe you would never restrain your four year old to sleep (as I experienced) but maybe you would take a doctor's word, to have your child wear their braces twenty-two hours a day.  (Not recommended.  What is?  To wear them as the wearer decides and is comfortable.)

***

So, what can you do?

Pay Attention:  Take in the signals your child is giving you.  Take them seriously.   

Make Medical Decisions Based on Different Criteria: The criteria you would use for yourself or any nondisabled child.  Do they need this intervention to stay alive?  Do they need this intervention to ultimately mitigate pain?

Know That Most Medical Professionals Aren't Specifically Taught About CP:  One of my siblings once shared that in his nursing training, they covered CP in a single handout and he already knew everything on it, just from growing up around Tara and me.

Take Your Child's Cues:  If they are crying or distressed in the midst of a non-lifesaving intervention or with a doctor's words, you can intervene.  A lot of people won't take the words or behavior of a person with CP seriously, especially a child.  But if you are a nondisabled parent, you have the power.  Use it to protect your child.

If Your Child Has Medical Trauma, They Won't Just Get Over It:  Even if your intentions are the best you've ever had, reframing a day where your child had their autonomy taken away, where they were violated and / or restrained to something positive is only teaching them a lesson in denial.  Give them words to talk about it.  Give them space to play about it.  Help them name their feelings, and help them navigate their triggers.

***

To finish, I want us to consider this question: Is it really worth it to put your child through medically invasive procedures in the interest of achieving nondisabled milestones?

Is walking really that important?

I'm a full-time wheelchair-user right now, and I'm happy to have a way to safely navigate through the world.  A way that does not exhaust me.

And I can't begin to say how much I hope that the tide begins to shift with regard to just how quickly those in power positions -- in the medical profession, and nondisabled parents -- make decisions that will stick with those of us with CP for years to come.

We will carry this trauma in our bodies.

We will carry it in our souls.

Even if we can't remember it...it remembers us...the ghost of it rising in us when something nudges it awake.

I'm all for lifesaving interventions.  I'm all for adults with CP making our own decisions about wanting (or not wanting) medical procedures when we can consent.

What I'm asking for is awareness.  It's consideration.  It's trauma-informed care.

And it's a realization that people with CP will always have CP, no matter what.  To accept that, and learn to love us, will do you (and us) more good than you can imagine.

***

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