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"What were the first few months after your stroke like? And rehab?"

Diane Barnes answering audience questions after My Stroke of Luck, The Marsh, SF

Of the first few months after my stroke, I have mainly sense and image memories, rather than verbal ones. Some of my senses were amplified, especially light and color. I remember the sky being so bright and blue one day that it seemed vibrate and strike a complex, audible chord like an organ. I must have stood staring at the sky listening to her music for an hour. It was so vibrant, so intense, I have rarely felt so alive. It was more stirring than any art or music, the closest thing to heaven and utter peace I could imagine.

But it was not always so wonderful. Noise was everywhere. I heard a dripping faucet, a lawn mower, a passing truck, children playing, birds singing all together as a cacophony of blaring sound. Only with difficulty could I identify the individual sounds, but I could not locate any of them in space, or tune my attention to any one. They all seemed to be in my living room at 50 decibels, though none actually were. When I found myself in a space with other people, I heard every conversation at once at the same volume, whether they were next to me or across the room and could discriminate none. Which made me self-isolate, to control some of the untoward sensory input.

I could not identify regular household and kitchen objects. I could not read the newspaper. I could look at it, and I could read the words, but by the time I got to a period or comma, I realized I had no idea what I had read, or what the words strung together meant.

And as those of you who have seen the show know, I had an aphasia, though I was unaware of it.

Occupational therapy and speech therapy were the first services I was provided. The occupational therapist evaluated my functioning in my home. In addition to safety stickers, she plastered memory stickers around the house (on the front door - keys, jacket, purse, phone). And after watching me get up, leave my room, stand in the middle of the living room confused, then go back to my room, she said, "You are practicing forgetting. You got up to do something and forgot what. From now on, whenever you want something, start repeating what before you get up and continue repeating it until the task is complete." Turns out, several minutes later, I realized I was thirsty and had been going for a glass of water. "Then you say 'Glass of water, glass of water, glass of water,' until you have it in your hand." So, I said glass of water,' stood up, repeated 'glass of water' until I was in the middle of the living room again. At that point, she realized I didn't know where to get a glass or where the water would come from. So, she walked me to to the cabinet, had me open it, take out a glass, close it, turn, go to the sink, turn on - you get the idea! -all the while repeating, glass of water, glass of water.


And if you've seen the show, you know a bit about the speech therapy. But in a nutshell, imagine learning a foreign language. Now imagine learning that new language on a different planet. Meaning every object is foreign and unknown to you, so you have to learn the name for everything you see, and also its function.

Gradually, I relearned the names of things, and began to learn how things around the house worked. At some point I made enough progress to have a neuropsychological assessment, and begin a tailored program of cognitive rehabilitation, which involved computer games, work books, story sequence cards, flash cards.

My physical therapy came mainly through my gym, I'm guessing, because I could handle the activities of daily living (the medical criteria for services). I followed structured exercises, adding Pilates, Yoga, then Zumba as my ability and stamina increased.

My program of rehab lasted a bit over 5 years, after which, I continued only the computer programs to increase processing speed. After that, I felt improv, writing and acting as well as the gym were doing more than rehab could.

Some of you have asked how I was so successful in rehab. It was a combination of luck, knowledge, motivation and grit.

Certainly, a lot of recovery and successful rehabilitation depends on what parts of your brain are injured and the extent of damage. I was lucky; the areas that controlled insight, self knowledge and awareness were either intact, restored or repaired quickly. So for me, rehab really began with the daily process of discovery and rediscovery of the changing landscape of my brain. As I discovered and tallied my losses, I still had a clear image that I had been quite different before, quite capable of so much of which I was now incapable, and I could see the distance I had to travel. Yes, it often felt overwhelming, bordering on hopeless, but I knew - and I BELIEVED - recovery was possible. I cannot overstate how much FAITH helped me persist.

In my survivor of brain injury support group, one woman truly believed she had never had a stroke, had no deficits, and was only coming to group to humor her son who insisted the contrary. I don't think it was denial. I think she had lost the parts of her brain that would have allowed her to know. Needless to say, she was a poor candidate for rehab.

Age was also on my side. Though not a spring chicken, I was young enough, otherwise healthy enough and in good enough physical shape that I had the motivation, interest and drive to want to regain my lost abilities, and the potential ability to do so.

And both my sons' birth parents had chosen me in no small part because they wanted them to have the opportunity to go to college. So I felt honor bound to make that happen. The prospect of being on SSI, social security or disability was terrifying. I wasn't going to let that happen. At one point during a computer remediation session, I hit the wall of my mental abilities. My head was killing me (though nothing like the worst headache of my life of my stroke), a frequent occurrance in the first couple years during mental exertion. And I just could no longer think. I broke down. As I sat there sobbing, the facilitator suggested I call it a day. No, I thought, I will do whatever it takes to get better, or die trying. If I die, my life insurance is good enough, it will see the boys through better than an impaired me on disability. (Disclaimer: I was brain damaged!!!) . I dried my eyes, and went back to the task at hand.

And I cannot underestimate the role of grit. Having survived growing up, medical school, internship, training, single motherhood (especially with baby Takeshi, who slept through the night only once before age two), I was used to hard work, and determined. That said, rehab was the hardest thing I have ever done in my life, and it brought me to my knees on a daily basis.

Of course, the silver lining: in the need to rebuild myself and our family after that bottom hitting whallop, there was lots of space for reinvention! Yes, and!

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