I Can't Stop Fighting

I want my old brain back.

Posted Jun 03, 2020

When I first had my stroke two years ago, I went through the seven stages of grief. I knew the traditional Elisabeth Kubler Ross’ five stages of grief from my work as a social worker:

  1. Denial
  2. Anger
  3. Bargaining
  4. Depression
  5. Acceptance

I became aware of two additional stages I felt matched my situation:

  1. Shock: Initial paralysis at hearing the news
  2. Testing: seeking realistic solutions

I definitely was in shock at hearing the news, and then denial set in, especially since the doctors were unable to pin down the cause of the stroke. It was neither an ischemic stroke, a clot that occurs when a blood vessel supplying blood to the brain becomes obstructed, or a hemorrhagic stroke, a brain bleed when a weakened blood vessel simply ruptures. The doctors saw the evidence of the stroke on the MRI but labeled it as a cryptogenic stroke or one of unknown origin.

Source: © Shutterstock | Image ID:1537605083

I endured a serious post-stroke depression as I struggled with the unknown. I returned to therapy and needed additional psychotropic medication to lift and stabilize my mood, I recovered physically from left-sided weakness but continued to endure the aftermath of cognitive deficits. The deficits were mainly in the area of executive functioning which includes processing speed, ability to focus and pay attention, organizational skills, ability to multitask (not ideal, but sometimes necessary), and follow and retain direction. These are the skills I used most often in my highly stressful and demanding job as a psychiatric social worker.

My neurologist kept assuring me that while the old school of thinking was that all brain recovery took place in the first six months after a stroke, they now know that not to be true and recovery can be an ongoing process. I heard the words floating in the air between her and me, but I couldn’t grasp them.

I worked with Dr. R., a rehabilitation neuropsychologist who had over 30 years of experience in working with people with traumatic brain injuries. She was the one who eventually said she thought I’d be able to return to work, starting on a very limited basis and increasing my hours gradually as I could handle it.

I had the stroke on Memorial Day weekend of 2018 and I returned to work just after Thanksgiving, putting in only eight hours a week – two four-hour days. Under Dr. R’s guidance, it took me 13 months to get back to work full time. I started back at 40 hours a week in the last week of December 2019.

I’ve been full-time now for five months and I feel as though I’m going through the five (the original five) stages of grief all over again. Before the stroke, I was a leader on our team, I was the person our team looked to for answers, I was the intermediary between the managers and the rest of the team. There is a paid position and a title for that called “Team Lead,” and each time I asked for the promotion, I was told to “hang on” as the managers were working on getting the position approved. The stress of doing that work and carrying a regular caseload of well over 100 cases was a contributing factor to whatever caused the stroke.

I was the one who our team's managers filtered all the requests through to review cases from other teams in the company. They trusted my clinical knowledge and judgment and rarely looked at the case themselves. I felt proud they believed in me.

All that is gone as I struggle to get through the ten or so phone calls I have on my calendar to make every day (we are not going out into the field right now due to COVID-19). We have to document every phone call we receive or make, even if we leave a voicemail, and this gets time-consuming. I have other responsibilities as well; I’m presenting a case in clinical rounds on Friday, so I had to go into various databases to gather as much information as possible, then condense it and complete a template. Even this takes me longer than it used to and I debate over what to include and not to include.

I try to use the DBT (dialectical behavior therapy) skill of radical acceptance. Radical acceptance means acknowledging my situation, not necessarily agreeing with it or liking it. In radical acceptance, fighting what has happened intensifies the emotional reaction.

And I’m fighting. Because I don’t want to accept that my brain won’t bounce back like the pink Spalding balls we played with as kids. I keep waiting to wake up one day and when I turn on my computer to work, my brain turns on too – at full power.

Source: © Shutterstock | Image ID: 29618374

Though I am grateful because I realize the stroke could have been much worse, I’m not graciously accepting the place in which my brain decided to land. “Move,” I scream at it until I’m hoarse. “Do something. Don’t just sit there.”

I refuse to accept this mental clumsiness. And each day I awake poised to fight.