What It’s Like When Your Medical PTSD Becomes Reality

I wish I were making this up.

I wrote previously about my medical PTSD, debilitating 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 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 and spasticity 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.

• What is PTSD?

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.

Follow this journey on the author’s blog.