Denver, CO — I had no idea how the stroke survivor group would turn out. Every week is different. One time I asked what was new in the last week and we spent an hour-and-a-half talking, running out of time for my oh-so-carefully chosen topic. I could lament but one professor told me, “if you do not get to your curriculum, consider it a good group”. Not reaching my own agenda (as I’m often wont to push) and watching the group veer sideways toward a different topic means that they have congealed and formed the bonds needed to bring up the things they really want to talk about. Rather than depending on me to lead the charge, they sit together comfortably like fruit cocktail in a fish-shaped Jell-O mold, the kind your great-aunt filled with apples, carrots and walnuts. And a leader must actually plan each group for the congealing to occur. The more hours you spend, the better. Then, physics of group interaction hold that this good-willed, all-time-consuming, brilliantly-thought-out plan is exactly what the group needs to completely run amuck and jaunt away on their own just-as-meaningful agenda. Of course I’m fine with this.
A student was going to observe the group this time. She said it was for a multicultural project. She had to pick an underprivileged group new to her, participate in an event, and reflect on how this changed her perceptions. Being around people with disabilities was new to her, although I had to say, no one in the group felt disabled – more just different. Feelings about this often came up in the group, feelings of isolation met by solidarity that here we all were accepted, even me, and could define ourselves.
I sat the student next to one of my favorite people. He was a stroke survivor whom you couldn’t help but like for his friendliness, taste in music (he loaned me a Trampled by Turtles cd), and his love of the mountains. I thought if her world flipped, he’d be a safe person to grab in the tumble. She sat down, took off her jacket and appeared fine. I took to the other end of the table, starting with introductions and name-tags as I always and annoyingly did when someone was new. The friend I sat the student next to quipped that his name-tag was wrong – he wanted to be Brad Pitt. On the sign-in sheet later, I realized that Miley Cyrus had also attended.
The group shared with the student what people needed to know about someone who’d had a stroke.
“Sometimes you have to be patient when someone has aphasia and, like, let us find the words,” one young woman said. She was 400-pages into writing her first novel.
Another woman who had had a stroke more recently agreed. She was in a wheelchair but several days out of taking her first exhausting steps to the cheers of everyone around her. She still laughed easily. We joked about her past life as a dog groomer and what a poodle would look like now if she shaved it one-handed. Brad Pitt commented that it would look like those half-man-half-woman figures at the carnival. She laughed again and our goal, we decided, was to see if we could make her laugh so hard that she fell out of her wheelchair, or at least peed her pants. She giggled at the attention and around the table we went.
“We’re just like you,” someone else said.
Another man continued, “My brain’s not messed up. It’s just hard to find the words sometimes.”
I remembered one woman crying in sorrow one night and a thoughtful man across the table told her, “It is hard. Sometimes you’ve got to be your own rainbow.”
A woman new to the group asked about medications, saying they made her numb and not herself. Personality-wise, she was a happy soul with a head of bouncy, fun hair. It was bothering her to be so sleepy. Stroke often causes depression which is then compounded by a sudden loss of friends and disorientation about a new environment which revolves around hospitals and rehabilitation. One man I spoke with said that when he woke up post-stroke after being in a coma for three weeks, he pretended to still be asleep.
“When I was a kid, I had all these dreams about aliens. The lights in the hospital at night scared me. I didn’t know what was going on. I mean, I didn’t know if I’d been abducted or what so I just pretended to be in a coma still.”
Another new survivor in a wheelchair asked more questions about medications. He’d suffered a stroke after knee surgery. When he stopped making the needed progress to qualify for rehab, he was moved to a senior assisted living facility.
“I’m just with all these old people,” he said. “My house, they’re remodeling it but it’s not done. I’d rather be home and just make it, even if I have to go up the stairs on my bottom. These old people at the funny farm – that’s what I call it – they ask me all these questions at dinner and they can’t even hear my answers.” He started to get choked up.
“They ask me what I used to do for a living,” he paused and took in a deep breath. “It’s not ‘used to’ – I still have my job! I go back to my room and call my boss and she says I still do. I still have a job.”
He started to cry and I scooted the student out of the way so I could sit by his wheelchair with Kleenex’s and rub his back.
“I just want to go home…” he sobbed. “I just want to go home.”
We sat quietly with him, his face contorted in the worst pain imaginable.
“You will go home,” someone said. No one said anything about the job. Modern medical belief holds that the human brain will recover as much as it can in six months. Then they kick you off your health insurance. You should be healed. Then you just wait 24-months to apply for Medicare. It can take even longer to get on Social Security Disability Income (SSDI), often facing being turned down over and over. No income, no insurance, no friends. And it’s not true that your brain and body heal all they can in six months, and then whatever you’re left with is what you get. The brain continues to heal, building new connections, plateauing, then bursting through with a new ability. One stroke survivor in her thirties told me that her arm, curled with spasticity, worked once last summer when she was still mostly asleep but handed a baby back to the person for whom she was a nanny. Oh she knows this will happen again.
Out of reassuring words and tears, the group looked at me. As much as the physics hold that the group will run amuck, sometimes the circle returns.
“Well, this is tough,” I said. “But I think we need to laugh so we’re going to play charades. I don’t know of a good transition into this. Sound good?”
The group looked at me like I was a little crazy but they were exhausted from a group run to Timbuktu and back.
“I’m serious. It will be great.” Now they were looking at each other to see if anyone had another idea. Too late! And I split the group into two.
“Okay,” I told them. “I’ll pick a theme and then your group will pick something in that theme that they want the other group to guess.”
People looked at me skeptically like the time I brought in the cheesecake with the crust made out of Cheetos. They’d loved that but this lacked heavy cream and sugar.
“I’ll give you an example?” I asked, and everyone nodded.
“Okay, so the theme is ‘Movies’. Now what if I go like this?” I spread my arms wide and tilted back my head like an ocean breeze was buffeting my face.
“Titanic!” Someone yelled.
“Yes! Now let’s flip a coin to see who will go first.” Between finding a coin and flipping it, we couldn’t remember which team was ‘heads’ so I pointed to one side.
They led off with a horror movie and I invited the student to participate: “If you need to, she can move – use her!”
The other team guessed right away: “Chucky!”
“Okay, your turn,” I said to the other side.
“Oh, I got one!” said a beautiful woman in her fifties who could be a model. She lost her thought.
I told her to whisper it to me and I would tell the group.
“Titanic!” she told me. I said that that’d be a great one but I’d already done it.
“Oh,” she looked perplexed. “Oh! I have another one!”
“Twilight!” she said in a voice I hoped the other group hadn’t heard. “But I don’t know how I’ll do it.”
“Be a vampire,” I suggested and she nodded, starting to stand up shakily since one side of her body is weak. She’d also lost part of her field of vision, unable to see anything below the horizon, namely her feet and body when she looked straight ahead. She asked the other group if they were ready as I stood by to make sure she didn’t fall over. She thought a moment and then suddenly curled her upper lip back and pulled in her jaw. She stared at a shocked group in front of her. They looked shocked and stunned. Robert Patterson, eat your heart out!
“Here,” I whispered. “Pretend you’re biting my neck!” I leaned over.
“What are you doing?!” the novel-writer demanded. “Are you kissing her neck?!”
I held onto the vampire’s waist as she tried to bite my neck. If we fell, how would I explain this to my supervisor?
“She’s BITING my neck! Biting not kissing!” I gasped, laughing.
“Twilight!” the group shouted, including someone on her own team. We cheered.
The other team said they wanted to act out The Sting. The person whose idea it was didn’t want to act. I asked the woman whom we were trying to laugh out of her wheelchair to act with us. She was new but enthusiastic. Living with her parents now – one parent caring for the other who had dementia – the stroke center was her outlet.
She and I agreed to pretend to watch a bee flying around the room. She would mirror any movements I made with my head. Then I would sting her. She looked at me, shocked. I told her to just play along.
“Okay…” she said skeptically. I started to watch the bee flying over our heads and she quickly followed the movements of my head. Then I swiftly poked her in the arm with my finger, making a buzzing sound.
“Ow!” she said.
“That’s perfect!” I told her. She frowned at me.
“The Sting!” everyone yelled.
“Did I really hurt you?” I asked her.
“No,” she said and laughed.
“Want to switch themes?” I asked the group. We were close to our finish time but still going strong. Everyone was tired of the movie theme.
“Okay, the theme is food. Who’s got a food they can act out?” As soon as I said the word, I realized that food was a hard one. Food doesn’t move or talk. What are you going to be? A bundt cake? Lima beans?
I had no idea if this would work but then Mr. You-Gotta-Be-Your-Own-Rainbow spoke up that he had an idea. No, he didn’t want to whisper it to me. Cancer had left him almost blind as a child and a stroke after that left him living with his mom and step-dad. He had once been an ace on the golf course and a painter. He still trumped everyone on the putt-putt golf course at the annual summer picnic but now spent more of his time on art. I hung his beautiful painting of a bird of prey over my desk, loving the rainbow of blues and oranges. We watched as he stood his stiff body up – please don’t fall! – and leaned against the table. He put his hands on the top and continued leaning over until he could climb onto the table between his teammates. Then, lying on his side with his legs sort of resting on a chair, he put his arms at his sides, held his head up and grinned at the other team. We realized he was acting out a food. They looked shocked. We all looked shocked. They looked at me like it was my fault.
“What are you?!” I whispered. He looked up at me standing on the side of the table next to his head. With amusement, he raised one hand to his mouth so no one could hear.
“Sushi!” he exclaimed, trying to whisper. He put his hand back down at his side and grinned smugly at the other team.
I chuckled and could only think of one way to help. I tried to pretend my arms were a big pair of chopsticks. The other group guessed I was a mother bird, doing nothing to hide their confusion at a man lying on a table and me clamping my arms. The new woman stood up and started bowing Japanese-style to help.
Brilliant! I thought. The other team guessed spaghetti. Pretty soon everyone was guessing. Mr. You-Gotta-Be-Your-Own-Rainbow just grinned back at them from the table.
“Sushi!” someone finally guessed.
“Yeah!” we shouted back.
We ended the group on this high note with the family and friends support group checking on us because we were so loud. The student barely checked in with me while others told her how nice it was to have a chance to tell her whom they were instead of having someone assume. They told her to come back anytime. I found out later that it took dinner and a beer for her to come down from the whole experience. Everyone said they hoped to see the new people again. We all agreed that it was good to laugh.
“Rowdy group tonight,” said my co-intern as we turned off the lights.
“Yeah,” I told her, realizing my agenda was again put on the back-burner. “We needed to laugh. Have you ever seen someone act out ahi?”
She looked at me curiously, pausing with her keys at the car door.
“I’ll have to tell you about it sometime.”
I walked to my car in the dark and glanced up at the stars in the sky on the drive home. We certainly ran the gamut of emotions tonight. I tried not to lament that, coming into an established group, I couldn’t impose my new group skills like ground rules and organized check-ins where people only spoke for two minutes and then let the other people have a chance to report. Instead we interrupted, played jokes on each other, tried to support each other and laughed. This group would suffer through writing down a goal and going around the group in an organized fashion but really, the true goals were hard – like walking or talking – and sometimes we all just need a break.
The challenge is to keep the goal in mind but not forget a goal of life right now, the goal of being accepted and loved for where you are. Mr. You-Gotta-Be-Your-Own-Rainbow acting out sushi, being his own silly walnut in the safe Jell-O mold of group, that met a goal. Everyone loved him, everyone laughed. I thought of acting out The Sting and hoped that I hadn’t left a bruise on the woman’s arm when I stung her. She would be in for therapy in the morning, happy in spite of the pain, working on her goal of walking again. Goals can be so serious sometimes, I reminded myself to tell her, and walking is a great goal but some of us here adore you and our goal is to laugh you out of your wheelchair. Don’t forget that. I couldn’t wait to remind her.