thislife-onwheels

[thislife-onwheels]

Childhood Dreams

I’m well aware not a lot of people follow me here--however, I thought this was worth posting!

Recently, I realized one of my childhood dreams of becoming a published author (and a New York Times bestselling one at that).  I am so honored to share that I’m a co-author in a book authored by Lady Gaga and Born This Way Foundation Channel Kindness reporters.  The book, also titled Channel Kindness, began as a digital platform of the same name that tells  stories of resilience, kindness and bravery that the foundation has collected via the young people they have met since its inception in 2012.  The story I wrote is an incredibly personal one about the power of connection and how that connection helped me realize my life’s purpose.

If you’re interested in learning more about the book, its authors, or purchasing your own copy, you can do so here.

[thislife-onwheels]

What It’s Like When Your Medical PTSD Becomes Reality

I wish I were making this up.

I wrote previously about my medical PTSD, crippling flashbacks, and other symptoms.  Shockingly, it resonated with hundreds, if not thousands, of people who said that although their physical diagnoses were different, the mental scars of post-traumatic stress disorder that remained were a common thread.  I struggled with right along with the strangers who read my words, and prepared my body and mind for one of the scariest surgeries I've ever had: my second baclofen pump placement for secondary dystonia associated with cerebral palsy.  The surgery, one that works well for the vast majority of people, appeared a success.  I responded well to the intrathecal therapy, and after close monitoring and a week in the hospital, I was sent home. 

Mentally, however, I was in a different place entirely.  Throughout my hospital stay and my time at home during recovery, I was in a dissociative state.  Moreover, I couldn’t look down at my lower left abdomen where the hockey puck shaped internal drug pump lay.  As a child, it stuck out  of my skin quite significantly, leaving me in fear of myself.   When I went on to overdose, there was a very real and palpable fear among not just myself, but my family and doctors, that it would kill me.  This impacted me so deeply that I was working through exposure therapy to be able to look at the second pump, still sticking out of my skin, with my therapist—even if only for a few short seconds. 

Eight days after my discharge from the hospital, my worst fears became reality.

"Everything is fine; don't panic," I told myself, pushing away racing thoughts as nothing more than anxiety while my legs visibly spasmed in my bathtub. I have an incredibly high threshold for pain and spells that make my body contort for hours with even the slightest of movements were a common occurrence prior to surgery.  Despite the fact that this surgery was done to prevent this type of pain from occurring, I thought this spell would pass, like all the ones before it.

Needless to say, that's not what happened.

After an hour of agony and dystonic movements so severe it began to physically interfere with the ability of others to care for me, I broke down and called my hospital, barely able to get words out due to the sheer amount of pain my body was in.  Speaking to the nurse that handles urgent patient needs, I told her that I had just been discharged from the hospital for pump placement the week before, in addition to the unbearable pain that was getting progressively worse.  

"You don't sound good," she said.  "I'm transferring you to the doctor."

My heart dropped.   I held onto a sliver of hope and said a prayer.

When he answered, he told me to take my oral baclofen, and if I didn't see improvement in two hours, to come into the ER.  I took my oral medication while a friend continued to pray for me.  

An hour later, I was delirious; I blacked out in the car while my mother drove.  When I got to the hospital, my mom proceeded to drive my power wheelchair through the emergency room, while I moaned, rocking back and forth.  

Then, just like when I was a child and overdosing from the device, I fell into a coma.  I woke up, but the days that followed were a mix of delirium, pain, multiple emergency surgeries, and darkness.  

As it turns out, a spinal fluid leak--a complication from surgery that we tried to prevent by carefully monitoring my incisions for the previous two weeks, combined with E. coli bacteria--caused the pump, and my central nervous system, to become infected with E. coli bacterial meningitis.  It's an infectious disease affecting the brain and spinal cord that can kill very quickly from the onset of symptoms.

Two weeks later, I was out of the ICU, but very, very weak, bed bound, and receiving daily IV antibiotics through my jugular vein.  My PM&R physician came into my room on rounds, profusely offering her sympathies.  "When I saw what happened," she said, softly, "My heart dropped into my stomach, because that's an infection that spreads fast.  I don't know what your religious beliefs are..."

She trailed off.

To say my medical-induced PTSD has at times been overwhelming since this occurred four months ago is a massive understatement.  One of the emergency surgeries was to remove the baclofen pump.  I am now faced with the decision to have a third placed due to my pain from secondary dystonia and spasticity getting progressively worse; pain that can leave me incapacitated and that is triggered from speaking, swallowing, or even slightly contracting nearly any muscle.

Despite the fact that this is a planned two week admission to address a potential spinal fluid leak before it becomes infection, the scars--physical and mental--remain.  More so than ever before, my brain views pumps as ticking time bombs, and my body remembers, too.  The worst part about medical PTSD, for me, is the legitimate threat of past traumas reoccurring, over and over.  Because my body and treatments are viewed by my brain as a threat, my traumas haunt my past, present, and even my future.  However unlikely I am to have life-threatening complications from my next placement, my mind is always on alert, prepared to fight.

It is my ultimate wish for this type of PTSD to be more closely studied and taken seriously among researchers (I myself did a project on this as apart of my undergrad social work program).  I believe this type of trauma is far more common and impactful than we currently know, among children and adults alike.  All individuals who have these traumas deserve to have their fears validated, and treatment readily available.  I’ll close once again with these final words.

If you’re experiencing these things, know this:

You’re real.

You’re valid.

I see you.

[thislife-onwheels]

Hey, new people!

Hi! I see a few people have found my blog thanks to my last blog being re-posted on The Mighty (sorry I can’t italicize things on a phone). It’s still so crazy that so many have read my words and honestly, I’m still grappling with it. Your comments have blown me away and I’ve become even more passionate about raising awareness for medical PTSD.

I’m also going to try to use this blog more often to post about funny life tidbits, issues I’m passionate about, etc. Welcome. I hope you enjoy my word vomit (which admittedly, this entire post is).

How was everyone’s day today?

[thislife-onwheels]

Getting real about medical PTSD

First, do no harm.

It hit me out of nowhere.  One moment, I was petting my dog, Ole, and the next, I sat breathless and terrified, my heart beating out of my chest.   Transported to the darkest memories of my childhood, I felt like an eight year old again - a child who would be rolled through the double doors of the OR without much explanation beyond “we need to fix something that’s wrong with your body.”

In truth, that something often involved osteotomies and casts and drug pumps that failed.  On more than one occasion, those double doors saved my life - what do you mean it’s traumatic?

Memories flashed of being held down as I got knocked unconcious, one after the other, in rapid fire succession. I could smell the chemicals of the anesthesia, taste the saline, and hear the familar sounds of beep beep beep that would radiate from heart monitors.  I felt the sheer sense of fear in those final seconds of conciousness knowing that when I awoke, I would be overwhelmed by excruciating pain.  I felt all of this as if it were happening again in the present moment, despite the fact that I was safe in my home.

This is medical PTSD.

It’s real - and terrifying.

It’s funny, because as an adult who has gone under general anesthesia 30+ times since birth, I can generally go through those same double doors without much thought.  I make small talk with the nurses about my college classes, my travels, my dog - and sometimes, I do this while anesthesia is rushing through my body.  But in those two hours, I became a child again.  I was so overwhelmed that I was tearing up at my desk, and even the thought of calling my dog to comfort me took too much brain power.  In a word, I felt broken.

But I’m done feeling broken.

I’m on a mission to make medical PTSD real and acceptable - not just to validate others, but to validate myself.  My cerebral palsy is, in the words of one of my physicians, “a little bit complicated.”  My hips have come out of socket four times; I aquired a severe form of club foot; and my spine became so curved it nearly collapsed on itself.  That’s not even counting two baclofen pump overdoses from which I very nearly died--and I have to have a repeat pump placement in August.

Every single one of those required major medical intervention.

Eveyr single one required the sounds of beep beep beep.

Every single one was traumatic.

As real as these issues are, they’re seldom discussed. Maybe it’s because of the oath physicians take to “do no harm.”  Maybe it’s because we’re so conditioned to “be strong.”  Maybe it’s because we don’t want to admit we’ve been traumatized.  But one thing I do know is that I’m not alone.

If you’ve experienced these things, know this:

You’re real.

You’re valid.

I see you.

[thislife-onwheels]

Ode to Ass Shots

Sometimes, reality with CP is so ridiculous, it’s funny.  This applies to botox shots--which I’ve mentioned in previous blogs--but this time, they’re in my piriformis muscles.  Without being too specific about anatomy, these muscles connect your ass to your hips.  When they spasm, as can happen with the combination of cerebral palsy and hip replacement, the sensation mirrors sciatica and also throws in the excruciating feeling of a traditional spasm.  I’d been having terrible pain for months--sometimes so bad it would extend through my middle back causing my legs to shake violently. When I eventually diagnosed myself with piriformis syndrome via Google, I found that treatment consists of one having to get a combination of botox injections directly in your ass to paralyze the piriformis muscles and stop the spasming + compression on my sciatic nerve.

If this sounds unpleasant and incredibly personal, it totally is.  Friday, I went in for my second round of ass shots.  The first round was more diagnostic than anything--if it worked, we knew we were on to something.  It did, so we repeated the injections.

My doctor who does the injections constantly asks about my nerve and “butt pain.”  While receiving the injections, which took maybe all of five minutes, my doctor did things doctors typically do--asking questions like what I’m into, what classes I’m taking for college, and the like to get my mind off the fact that massive needles were sticking out of my gluteus maximus and mirroring nerve pain down both my legs.

The procedure was over as quickly as it began, and I spent the rest of the day resting.  I’ve experienced pain and spasm as a result, which is extremely unpleasant, but having a treatment that works is worth any amount of pain it might cause.

Until next time, thank you, ass shots, for your sweet, sweet pain relief.

[thislife-onwheels]

The “W” Word

The other day, before my appointment with my mental health therapist, I had some time to kill--roughly an hour.  A couple of miles from her office is a rock and bead shop; it’s quite eccentric, as are the people that shop there.  It was only my second visit to this store, but I love the feel of it.  The walls are adorned with crystals and beads of all shapes, colors, and sizes; some even arranged in the colors of the rainbow. I jokingly say that I immerse myself in “rock porn” upon each visit.  The employees get a kick out of it, too.

This particular shop is rather small, though, even for able-bodied individuals.  Some areas are a tight squeeze and I’ve hit the stands with my wheelchair on multiple occasions.  Per usual, I was having a rough time navigating and accidentally hit a display.  Thankfully, nothing broke, but the exchange that followed with a fellow shopper whom witnessed my misfortune was nothing short of hilarious:

Shopper: It’s tight for me, too, and I’m not even in a...

Her lips formed the shape of the letter “W” but she couldn’t bring herself to finish the sentence.  She again said, “I’m not even in a...” and it was painfully obvious she couldn’t bring herself to say the word wheelchair.

“You can say the word ‘wheelchair. ‘ It’s okay.” I responded, not even meaning it in a shady way, but in a “it’s-okay-I-know-this-is-awkward-for-both-of-us” way.

After much effort, she composed herself, and said the words, “I’m not even in a wheelchair.”  She was clearly embarrassed, and I could sense it from a mile away. The person who drove me was with me the entire time, and witnessed the whole exchange.  By this point, we were both doing everything we could to hold in our laughter.

The next time someone approaches me about my wheelchair, I’m going to politely ask them to call it “The W Word” instead.

[thislife-onwheels]

How I got my nickname

When I was 12 and I didn’t have an accessible van—one that could transport myself and my power chair—I decided to stick it out and go with my brother and a family friend, Christmas shopping. This is a process in and of itself, given the fact that I need to be physically lifted in and out of a vehicle, and also into a chair. We couldn’t fit my wheelchair in the trunk of the car that we were using, so I was basically left with no other choice but to use a Walmart scooter. Point number one: they are a pain in the ass to drive. Point number two: if you don’t “look” disabled but still need such a scooter—despite the fact that you can barely hold yourself up in one—watch out.

I was minding my own damn business, trying to find a gift for my brother, when an elderly woman—who was also a store employee—approached me. I didn’t really understand why at first, to be honest. Pretty soon, our conversation went like this:

Employee: Excuse me, miss.

Me: Hello!

Employee:  You really shouldn’t be playing around on that scooter.  Please return it.

Me: ...I beg your pardon?

*incredibly awkward silence*

Employee: Oh, I see you’re crippled. Carry on!

Realizing I had been accused of faking my disability, I couldn’t stop laughing for a solid ten minutes like a maniac in the middle of the aisle. Eventually, the name “Cripple” stuck with me, and it’s been my nickname ever since. The moral of the story: I am an old person in a young person’s body, even if I don’t necessarily look like one in all situations. I promise you I am a 100%, fully-fledged, cripple. 

[thislife-onwheels]

Pictured above is a crippled girl in her natural habitat: the handicapped parking spot randomly placed outside of a Green Mill, with a (now semi-retired) service dog who is clearly not having it.  This is of course complete with a “Stop Staring” tank top.  I’m convinced whoever took this photo was staring the entire time.

[thislife-onwheels]

Poison and Britney Spears: A Day in the Life

Today, I went into clinic for the second day in a row.  As of yesterday, we are basically throwing the kitchen sink at my pain before we attempt surgery, largely due to how invasive it is.  According to my doctors, my fusion mass (a fancy term for my fully-fused spine, but that is another story for another day) makes things significantly more complicated as we would literally have to drill through said fusion mass to access my spinal cord and place a pump.  As my physiatrist likes to say, I’m just a tad bit complex.

At today’s clinic visit, our main goal was Botox injections.  Any cerebral palsy patient likely knows of Botox or has had it.   For those who don’t, no, it’s not cosmetic.  Although it has the same underlying effect when used cosmetically in that it temporarily paralyzes the muscles in which it is injected, therefore lessening wrinkles, for a cerebral palsy patient, it temporarily paralyzes leg muscles, such as in the hamstrings or around the hip joint.  Although poisonous if not very carefully dosed, it has shown promise in reducing muscle spasticity, or tightness. The idea behind this is that if the muscles are temporarily paralyzed, spasms will be reduced and thus we can expect a reduction in pain.

For me, this consists of about 16 shots over the span of about two to three minutes, directly in my hamstrings and calves. Unlike most people, I’m used to constantly getting stabbed with needles in one way or another, be it in the form of this, IVs, or blood draws, so it’s actually super easy.   Unless phenol is also used in combination with the Botox—another type of injection that functions as a nerve block thus requiring general anesthesia, and a procedure I’ve had about a dozen times—one is totally awake for the whole thing.  Music therapy was offered despite my pro status, so I thought why not?  

A man named Keith brought an iPad with a selection of playlists, and I promptly selected the 90’s playlist. After much consideration, I sang (okay, more like screamed) Alanis Morrisette’s “Ironic” with the music therapist while he accompanied both with guitar and voice.   My doctor then proceeded to inject me with poison in both legs.  The therapist actually said I sounded great—although I couldn’t stop thinking about how much I sounded like a dying cat—and made his day. Not bad for someone trying to sing laying totally on their stomach while getting stabbed with literal toxins!  After the procedure was over and I was waiting to be lifted back into my chair, we decided to have an impromtu jam session to “…Baby One More Time” by Britney Spears. I tried my hardest to imitate her “baby voice” and failed miserabiy.  I’m a 90’s kid, what can I say?

I can expect these injections to start giving relief within a week and hopefully, they will last around three to six months.  In the meantime, we are also monitoring vitamin levels, such as iron, which I’m apparently quite deficient in.  The nurse literally recommended Total cereal, which I’m told is like eating cardboard and makes me feel incredibiy old, but anything for progress! 

How was everyone’s day today?

[thislife-onwheels]

We need to talk about disability and post-traumatic stress

I was born with spastic quadrapelgic cerebral palsy—the most severe form of brain injury one can acquire at birth—due to both premature birth and birth trauma.  For my first three months, my parents lived inside the chaotic, yet sterile hospital walls of the NICU, watching my heartbeat flutter up and down, listening to the constant beeping of the monitors that were keeping me alive.  On top of emergency surgery to remove dying tissue in my colon and an ostomy bag that was attached to me for months after, my family had to accept the fact that their child would never walk, have limited use of their arms and trunk, and perhaps never talk.

Thankfully, despite being in a wheelchair, I talk—a lot—and as one of my therapists put it, I “had a lot of spunk.”

But the road ahead was still filled with uncertainties.

For example, my first memory as a child was my first femoral ostetomy for hip dysplasia. Both of my hips were surgically broken, muscles were released, pins were placed and at just three, I spent six weeks of my life in a body cast, immobile.

Similar procedures continued throughout childhood - ranging from having the aforementioned plates removed, to releasing both hamstring muscles, to placing a baclofen pump, and more.

The pump still haunts me.

Essentially, a baclofen pump is a drug pump that is placed under the abdomen, with a catheter threaded through the spinal cord to give my body a continous supply of drug.  Our thought process at the time was that this pump would make my muscles far less spastic, thus lessening the damage on my bones and muscles as I grew older and, in theory, lessening the need for future surgeries.  I was seven.

About a year after the pump was placed, it went haywire - for some reason or another, the line in my spinal cord had kinked.  I was overdosing around the clock.  No one knew why I couldn’t keep my eyes open, why I was projectile vomiting or why I became unrespnsive; my pupils were so dialated, emergency room teams thought I had already died.

To this day, I still have vivid memories of being the Children’s Hospital ICU, which contained multiple beds.  Some children were recovering from surgery; others had been burned; others had been in accidents.  Despite the fact that I could quite literally die at any moment, all I cared about was being able to move the head of my bed up and down, the orange buttons fascinating me to no end as they always did when I was admitted around that age.

Eventually, even I knew shit was hitting the fan.  At one point, while watching E.T.: The Extra Terrestrial in my room with a massive, old school roll-in TV and an oxygen mask covering my face—which I initally mistook for a surgical mask—I did everything I could to fight the urge to fall asleep.  I was terrified I would once again drift away, unable to wake up.

One admission turned into another as another overdose had occured not long after my discharge.  This time around, my mother drove me back to the hospital where the pump had been placed.  I was vomitting in a coffee mug in the back of our mini van, and she promptly carried me through the front doors of the hospital, begging for help.  It was eventually removed, but tne combination of having a warped self-concept from previous surgeries and two near-death experiences severely traumatized me and made me a shell of a child.  Not having a pump also means I’ve had to undergo additional procedures, such as on my hips, legs, feet and spine.

Which brings us to today.

At 24, after nearly three dozen trips to the operating room—most of them directly related to my cerebral palsy—I have made the decision to proceed with having another baclofen pump placed, due to severe chronic pain as well as fatigue related to my cocktail of oral drugs.  In the midst of coming to terms with that decision, I also began attending therapy and recieved the diagnosis of post-traumatic stress disorder related to medical trauma.

If there’s anything I’ve learned since my PTSD diagnosis—even if it’s only been formal for a few weeks—it’s that it’s really not exclusive to war veterans.  This is something I’ve known for awhile, of course, given that I’ve studied it and other diagnoses in school, but when you’re having to face your own trauma, you view it from a different perspective.  As I often tell my therapist, I was just trying to get from point A to point B.  As traumatic as it’s been, it’s also been my normal, and has been for literally my entire life.  I always viewed it from the lens of, this sucks, is excrutiatingly painful and I feel super vulnerable right now, but it’s what I have to do.  To get better.  There’s even a part of me that felt like the friends who distanced themselves from me in school did so because I deserved it, and that there was something about my disabilitiy that made me a bad friend.  A bad daughter.  A bad sister.  And most of all, a burden.

Through all of this, I’ve realized that there’s others who have gone through medical trauma that have probably felt this way, too.  It’s so seldom talked about, but very real.  And as I head into consultation with my neurosurgeon next week, I’m not going to hide the persistant feelings of panic and what if.  

And niether should you.  Your experiences are real.  Let’s help start the dialouge, and stop the stigma.

[thislife-onwheels]

Introduction

Hi!  My name is Emma and welcome to my blog.  As the description says, I’m going to be using this to share my life experiences that have resulted from my cerebral palsy.  I use a power wheelchair, but I adapt and make incredibly inappropriate jokes that are, nine times out of ten, at my own expense.  I joke that if all else fails, I’d be a pretty killer sit-down comedian.

I’ll also be sharing more serious disability-related content and raising awareness for important issues.  I’ve gone through some pretty crazy shit and sometimes it amazes me that I’m alive to tell about it, but here I am!  

Welcome to my life--on wheels.