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"You couldn't even talk straight! Why didn't anyone tell you?"


Who says they didn't tell me?

That might seem a flippant answer to an earnest question, asked by an audience member following a recent performance of My Stroke of Luck. But that's the truth. I didn't know I couldn't speak, that's for sure, but remember, I was seriously brain injured. To know something, one must first learn it. Learning depends on the ability to store and retrieve information. Had they told me? Did I understand? Did it register? Did I forget? Or did they not bother to tell me? Or was I mute while I was in the hospital?

No real way to know.

But would knowing have been helpful? When I did discover I had word salad, I was overwhelmed, flooded with depression and hopelessness. And so I retreated from any interaction into my own little world. Indeed, there is some evidence that people with cognitive disorders may benefit not from being confronted with the truth or reality, but from going along. Take the recent story of the woman whose husband with Alzheimer's forgot they were married, He knew he loved her, wanted to be married to her, and so he proposed. Though she could have insisted on the truth, that they'd been married 38 years, she did not. She arranged a wedding that weekend, which made him estatic. What a graceful solution; insisting on the truth would likely have be met with agitation.

"How could they send you home not talking right?" I addressed that in my 1/28 shoutout (available on my blog page) about the medical criteria for assistance, the activities of daily living scale. Basically, being inarticulate or having a speech disorder does not affect one's self care ability on the most basic level. So, home you go.

Someone asked, "Well, you made no sense when you spoke. Did you make sense when you wrote things down?"

Again, I don't know. Problem is, I didn't know I didn't make sense, so it never occurred to me to find a pencil and paper to attempt to communicate. So, did anyone in the hospital discharge summary or in my discharge instructions suggest writing? Again, no way to know. I'd guess not. A hospitalization treats acute medical conditions, the longer term issue of rehabilitation is after care. (Again, 1/28 I discussed why I may not have had the best coordination of services.) And once home, the only people I was interacting with was my sons. At 12 and 14, faced with an incomprehensible, babbling mother, asking me to write would never have occurred to them. I couldn't get to the phone before it stopped ringing, couldn't get messages, and for over 6 months, couldn't dial a phone number before the dial tone disappeared. So...

All of which highlights the exquisite vulnerability of single parent households in the face of medical catastrophe. And not just stoke- any number of acute or chronic conditions can leave any family in dire circumstances, with an inadequate safety net, and inadequate support; take away one parent, and the risk is magnified. We were relatively lucky; I was impaired, but relatively mobile and continent, had excellent health insurance, a decent employer, disability insurance, automatic bill pay and savings- things many single parent families do not. But without close family, with friends spread through 4 counties, our children in different schools, and no one I spoke with daily other than my children and colleagues, we lacked a close, extensive support network. And as a single working mom, I had been juggling enough that I hadn't cultivated one. But I digress.

As any brain injury, my stroke impaired my cognitive functioning, defined as

"the ability of an individual to perform the various mental activities most closely associated with learning and problem solving." In my case, in addition to the speech problem, that meant impaired ability to concentrate, short attention span, poor memory, poor comprehension, not to mention impaired higher functioning, like reasoning, insight, recognizing cause and effect, planning, understanding consequences, math ability, direction sense.

And every bit of mental work required tremendous effort, an effort that usually come up short, and quickly exhausted me. My brain was scrambled and it needed rest to heal, lots of it, before I was even ready for cognitive rehab.

Would it have done any good to be told how messed up I was?

Perhaps someone in your life has memory problems, dementia or a tenuous grip on reality. Does insisting on the truth help them or agitate them? Perhaps going along with their reality, their truths, will be more comforting and peaceful. Might be easier if you remember the words of Lily Tomlin, "Reality is nothing more than a collective hunch."

My Stroke of Luck resumes at The Marsh, San Francisco, 2/24-3/28

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