A brain goes rogue

on December 26, 2004, I experienced a major brain bleed that sent me into a coma and brain surgery. Up until that event, I had been a totally healthy 22-year-old. And then POP, just like that, what I knew of health and normal and independence vanished. Waking up was a two-day process after brain surgery. When I finally had my wits about me, I learned that I’d experienced a stroke, I couldn’t walk and might never live on my own again.

It would take another day for me to get up and test my legs — they worked— and months before I could drive again.  But I did it. In early 2005, I returned to some semblance of a normal life.

At the same time that I was gaining a sense of balance, both physical and metaphorical, another young woman was dealing with her own cerebrovascular event. In 1990, Terri Schiavo, then 26, had a heart attack and collapsed. The loss of oxygen to her brain sent her into a “persistent vegetative state.” For years, her husband, Micheal, had rallied against her parents, insisting that Terri would not want to live in such a state. Her Catholic parents said she was still a human, still their daughter, and they fought his attempts to end her life.

At just 22 when my brain went rogue, I was horrified by Terri’s situation. I watched news updates from my  parents’ couch, torn between siding with  Terri’s parents and her husband.

If it were me, what would I want?

Decisions

In those first days of recovery, before I could drive again, and thus before my independence was re-granted, I decided that I would have wanted to die.

“If I stroke out again,” I’d tell my dad, “you better let me die.”

He’d nod, knowingly. That’s what he wanted for himself, too.  I didn’t talk about it with my very Catholic mom, who I knew viewed every life as sacred, and would do anything in her power to keep me alive. As time went on and follow-up visits persisted, with each new care provider I saw, I would be given paperwork for an advance directive.

“It’s not a bad idea to state what you’d like done in the event of another emergency,” they’d say, handing me the folder. I’d carry it home to throw away, not wanting to think about such heavy decisions.

For the 14 years that Terri had been caught between her parents and her husband’s decisions,  the court in her state of Florida sided with her husband. But in 2005, President George W. Bush signed legislation that allowed Federal courts to have a say. Terri’s feeding tube, the thing keeping her alive, came out.

On March 31, 2005, Terri Schiavo’s decades’ long ordeal was over.

Today

Today marks the 15 year anniversary of  Terri’s death, and I have been thinking about her off and on all day, as I do every year. I didn’t know her and didn’t know of her until my own medical crisis brought hers into my world. But in the past 15 years, her legacy has continued to orbit in my mind.

When I finally returned to life on my own in May of 2005, I ran into a friend I hadn’t seen since before my stroke.

“Mars,” he shouted from across the packed bar I had entered with a friend. “Shit, I can’t believe you’re here. I heard you’d been Terri Schiavo’d or something.”

I assured him that I hadn’t and sent a heart call out to Terri, feeling connected to her despite our differences. I’m so sorry you died, and I lived.

When I moved to Chicago fifteen months later and began volunteering on the stroke and traumatic brain injury floor at the Rehabilitation Institute of Chicago (now the Shirley Ryan Ability Lab), I felt Terri’s presence as I talked, or walked, or sat with patients recovering from their own traumas.

When I studied the therapeutic power of writing during grad school, I felt her presence when researching and writing about disability.

And in my current life and work, I think of Terri every time I write about advance directives, difficult conversations and life support paperwork. I do some writing for a company that has designed a web platform and coach system to help caregivers navigate responsibilities in their role of caring for an adult loved one, so these topics come up a lot.

And outside of my own  bubble, I see a raging debate about who should get care during this time of COVID-19, how those decisions are made and what it does to those who are actually making decisions.

On this anniversary of her death, I think of Terri not as someone who died stripped of dignity, but as someone who we should all think about on occasion. We should all have in place our desires for our own end of life so that no matter how it comes or when, we’re able to have a say in what we want.

Love and light to you, Terri.