What Does Fear Feel Like After a Brain Injury?

Brain injury can have terrifying consequences.

Posted Apr 29, 2019

Shireen Jeejeebhoy
Source: Shireen Jeejeebhoy

Last week, I wrote about how critical social support is to people with brain injury and how we need to hear: "Don't be afraid." This week, I excerpt from my memoir my experience with fear after the inside of my mouth swelled up, the ER didn't know what to do other than prescribe steroids because the edema resembled an allergic reaction, and my body temperature shot up and my skin broke out in morphing, moving rashes.

Alone at home, after the ER visit, I didn't know what to do, and I felt in constant danger from my own body in the days, weeks, months, and years following. Concussion Is Brain Injury: Treating the Neurons and Me begins at the start of my brain injury journey; the "Fear" section recounts my experience with terror after my injured, recovering brain stopped regulating my body and how I tried to regain some control through connecting virtually with my doctor. Below is a brief excerpt from that section:

Fear

Chapter 14: Humans Aren't Tigers but Elephants

It was threatening my breath.

It was not being treated.

It was ruling my tissues.

My brain couldn’t regulate my body.

I couldn’t recognize the chaos in my thoughts, the round and round, what if it was this, but this was happening. But I knew I needed to see an endocrinologist. Anger vied with fear as they marched on my mission: See an endocrinologist.

Mum called the clinic for me.

She got me in to see an endocrinologist on Tuesday.

She wasn’t going to drive me.

I yelled that she had to.

OK, but she wasn’t going to stay. She had to get to work. I could get one of my kith to drive me home. I began to plot how to get her to accompany me into the endocrinologist’s office. I worried about getting back home. The clinic was so far. I flagged. I fought myself stopping in my tracks, standing, swaying, collapsing. Once I sat, I couldn’t move again. Keeping going was easier, though the fatigue consumed me, sharding fire lines into my muscles.

If I have to, I thought, I guess it’ll be a return to that nightmare of 2000 and 2001 of praying not to fall over on the TTC, of talking my legs into a one-two rhythm. I phoned Arta, the one who was on time when only a half hour late and who seemed to disappear during daily life and pop up during terrifying emergencies. She cheerfully agreed to drive me home.

Mum, in her lifelong forgetful way, went to work in Brampton Tuesday morning. I panicked. She had to drive me to see the endocrinologist! She said she’d come right away. I stared out the window, waiting, waiting, worrying, feeling my sinuses worsening, doubling my traumatic rhinitis medication, hoping the Benadryls wouldn’t wear off, fearing the long drive where other sober drivers competed in who can threaten my safety the most, tailgating, erratically changing lanes, running red lights, speeding. I remembered my psychologist’s visualization technique. See myself like an enormous giant, striding over the highways and arriving home in one piece while deep breathing. My breath slipped in and out of my throat. It wasn’t being cut off, I assured myself.

As Mum and I waited in the gulag waiting room for the endocrinologist, I hadn’t gotten any further along in my plot to get her into the office with me. He strode toward us, hand extended, my former now-semi-retired endocrinologist, happy to see both me and my mother. He ushered Mum in, taking it for granted that she would come in with me. I almost smiled in relief. Mum wouldn’t counter the doctor.

She stood at the far wall in the tiny office, so reminiscent of my ex-husband on that long-ago day when I got the diagnosis of brain injury. I strained to focus on the endocrinologist’s words. I must remember. I’d long ago learnt I couldn’t take notes and follow along at the same time. I fared better by focusing as hard as I could and remembering.

He said authoritatively, “I’ll order more thyroid tests because it can flip.” He didn’t think it was stress, and I recalled how ER said it was a diagnosis of exclusion. He said categorically that I did not and do not have an allergic reaction. This is dermographia. He pointed out to Mum, “See here, these red patches.” I stared down at my forearms. Mum nodded, as if she was paying attention. “In ninety-five percent of cases, the cause is unknown.” He pointed out my eyes. I didn’t understand what was wrong with my eyes, something to do with what the eyelids were doing. Mum nodded.

She could explain it to me, I thought.

He took my blood pressure, said my heart rate was always high, so he wasn’t concerned about that. But my blood pressure was another thing.

“Atenolol,” he said. I was to take it.

I hesitated. My high heart rate concerned me more. My blood pressure couldn’t be high; my whole life it had been too low. “Take half a tablet of fifty milligrams atenolol immediately,” he instructed firmly as he handed me the prescription. It would drop my heart rate, too.

“OK,” I agreed, wondering how I’d fill it, wondering how I could arrange to take the first pill in front of someone in case anaphylaxis drained my body and terminated my breathing.

Mum waited with me because Arta had gotten lost, and I asked her about my eyelids. She had no clue what he’d said, her brain’s old habit of zoning out having taken hold. Despair, anger, and confusion competed for supremacy in my heart. What was wrong with my eyelids? As soon as Arta arrived, Mum left. Arta drove me to the closest Tim Horton’s for an apple fritter for me and a large, sweet milky tea for her. Her young sons kept us company in her utilitarian vehicle. She helped me pick up my prescription. Back home, I cut it in half and swallowed my first dose of atenolol, fearing allergy would strangle me. I noted the time: 2:30 p.m.

Twenty minutes later, stress released me from its hold.

And Arta and her sons left.

I began to document my ordeal to email my endocrinologist.

Document. Document. Document. Feel like I have some control. Be a partner in my health.

Copyright ©2017-2019 Shireen Anne Jeejeebhoy. May not be reprinted or reposted without permission.

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