Imagination Rehab

The are many things I can't do since the stroke. For instance, I know that riding a bicycle is out of the question. At least for now. My lack of proprioception, sensation, balance issues,  and general right-side weakness are a few of the reasons. And it doesn't help that we live on a very hilly neighborhood. I haven't even had the desire to try.

About two months ago, we were driving on level ground, on a road with a bike lane. There was a bicyclist a few yards ahead of us, and from the car window, I had a great view of the bicyclist pedaling. The traffic was moving slowly. I watched him biking for several minutes. Suddenly, I remembered what it felt like to be on a bicycle: the wind, the noise of cars going by, the pedaling, the gliding, my own breath and the pumping of my heart. I had forgotten.

Sometimes I feel the stroke robbed me--temporarily--of parts of my imagination. Until something jogs my memory, my body can't conceive of some of things I used to do. And how I did them.

But little by little, my imagination is coming back. 

A Very Good Prognosis

My sister knows how devastating the stroke has been, for me and my whole family. She’s been a rock of strength and support. But every so often, when we’ve talked about how hard it’s been, she would also remind me: I’m on the upswing. It’s not like, say, cancer, she would say.

Well, in January I was diagnosed with cancer—sort of. It's a kind of breast cancer called ductal carcinoma in situ (D.C.I.S.), often called stage 0. It’s not one of the kinds of scary cancer my sister was thinking about. There is even some controversy about if it should be even called cancer (I like this NY Times article). D.C.I.S. is almost never life-threatening.

But it’s been a long four months since the diagnosis, and figuring out what to do about it. The fear that comes with the word “cancer” is one thing. The fatigue of entering back to the medical (and bureaucratic) world is a whole different story. It has felt so cruel: finally I had enough energy and fluency to chat with other parents at the playground, but now I needed to put my energy in talking to doctors about treatment options. Also, most of the doctors and medical people have been nice, but they haven’t seen many mid-life stroke survivors. At the appointments, sometimes I wanted to say: do you know how much energy this is costing me? Do I really have to change into the examining gown this time? Because I might have the energy to change into and out of the gown, or make dinner this evening, but probably not both.

Fortunately, this chapter of my saga is closed for now. I had minor surgery, and I can go back to focus on stroke recovery.

The really weird thing is this: I seem to be getting better all the time, despite everything. Maybe the diagnosis forced me to talk and write even more. Maybe my brain fog has been better because I've had to strategize about how to explain my issues before every appointment. Maybe I have even more of a sense of urgency about my stroke recovery.

 Who knows? Or maybe my brain was just ready to get better.

Coffee Therapy

I'm always looking for clues.

I'm always trying to figure out to get my body to move the way it used to move. The way it should move.

For instance, every day my long-suffering husband, Neal, brings my coffee to me in bed. I sit up, turn, and arrange myself so I can sit cross-legged facing the mirror that we (Neal) hung to help me do my exercises. Then I sip my coffee from my coffee canister. To the uninitiated, it looks like, well, I'm just drinking coffee very slowly, mostly with my affected (right) arm.

In fact, I'm hard at work. These days I'm concentrating on my neck muscles. As I use my right hand to bring coffee canister to my lips, I examine my right shoulder and my neck in the mirror. Every time I bring the coffee up with my right, my right neck muscles bulge. On the left, the neck muscles don't move. Aha: my neck muscles shouldn't be "helping." Each inch my right arm travels, I try to adjust my arm just enough that so that my arm and shoulder muscles are doing most of the work, instead of the neck muscles. Then I try to really feel the right shoulder muscles, my back muscles, my arm muscles--the ones that should be doing the bulk of the work.

Then sip more. Then do it again. And again. And again...


(Read Rebecca's excellent blog, Home After a Stroke, for more information about synergistic  movements, which I'm trying to lessen in this phase of my recovery. I'm not sure if I've really got it right about with what's going on with my neck/shoulder/arm muscles, but this is my guess.)

Grocery Therapy

Once a week, I prepare the grocery list. Here are some of the typical steps:

- Try to get the pad of paper that's on a magnetic hook on the refrigerator door. Forget I need both hands to grasp it. Drop the pad on the floor. Curse.

- Bend over to get the pad and hook. After few tries, I put the hook back with my affected hand. Tell myself: it's therapy.

- Open the fridge. Realize I didn't use my affected hand. Close the fridge. Open it with my right hand. Look in the fridge and see what we need.

- Go to the table, and haul myself up on a stool. Wish that the person who designed the kitchen used a leg brace. She would have known that counter-height tables are a bad idea.

- Start writing the list with my "good" (left) hand. Pause when I can't remember the first letter of "cheese." Tell myself: it's therapy.

- Finish part of the list. Stand up, after a quick check to see that my both feet are really on the floor. Go to the freezer, open it. Curse when bags of frozen vegetables fall to the floor, narrowly missing my left foot. Decide I need a break.

You get the picture. After writing the list, I type it, with both hands: it's therapy. Most weeks it takes me about two and a half or three hours for the whole process.

So a few weeks ago I was very proud of myself: for the first time, not only did I make the list, I did the shopping myself. Well, almost. After I put everything in the cart, I met our wonderful helper and asked her to wait in line. I went outside, sat on a bench, and basked in the sun. It was therapy.

Magical Thinking

When I come downstairs on Saturday morning, my daughter greets me at the bottom of the stairs. She's a confection in pink today. She's dressed up in an outfit her aunt brought back from India, made from a pink, gauzy fabric, embroidered with flowers. She is also wearing her Disney tiara, and holding a sparkly wand.

"Mama, do you want a spell?" she asks.

Apparently, she's a good witch today.

"What kinds of spells do you have?" I ask.

"Well, since you had a stroke and a seizure, maybe something... to help you with that," she says. Her voice trails off. Before I can speak, she's off again to another part of the house, talking to her stuffed animals and her brother, waving her wand and casting more spells.

Shrinkage

"Are you stylish?" asks my daughter the other day. She loves the word, even though she's shy about actually dressing up.

I was never very stylish, although I used to try. Then I got pregnant and had two kids. My body expanded, then contracted, expanded, contracted. In different ways. It's also hard to feel stylish when your clothes are often splattered with baby food, body fluids, or kids' paints. When my daughter turned three, I was hungry to change my look. I started wearing skirts, every so often. I bought some shiny ankle-length boots and I wore them two or three times. Then I had the stroke.

"I wish I could be stylish," I grumble. "It's hard to be stylish when I have to wear these stupid Velcro sneakers and my brace every day because of the stroke."

"Don't feel bad, Mommy," says my daughter, with a sympathetic pout. "It's not your fault that your brain shrank."

Theme and Variations

February 2^nd was my second stroke anniversary. I wanted to do an update about my progress. But at breakfast I read a story on the front page of the Boston Globe, and I knew I had to write about it. I had a hard time organizing the threads of different stories I wanted to include. So instead, I present you a theme and variations, for many hands:

1: The main story is about a man, Richard Mangino, who had lost all four limbs from a bloodstream infection about 10 years ago. For many years he painted with his prosthetic hands. About four months ago, he got a double hand transplant. Now he was able to pick up a milk carton with his hands. Like me, he is also starting to play piano again, if imperfectly.

2: The original owner of the hands was a man who, like me, had a cerebral hemorrhage with no warning. He had two kids, ages 5 and 11. He died the day before the day would have turned 44. His wife, Jodi Lloyd, had made the wrenching decision to donate his hands.

3: When I read the article, I remembered that about a year ago, I hadn't seen much progress with my right hand for a few months. One day I had gone down to the basement, and wanted to bring up something to the kitchen. On the way up, held on the railing with my left hand, and clutched a small can with my right. I dropped it, as usual. I sat down on the steps and start to wail.

"I can't do anything!" I sobbed when Neal came running to see what was wrong. I was exhausted with trying, and failing. Later that day when I had calmed down, I told him, "Sometimes I just want to cut off my right hand, and it be done with it!"

4: Often when Neal and I watch TV together and our hands are intertwined, I still get confused about which hand is mine. Neal is amused when I try to discreetly use my left hand to feel the pile of hands to figure out which one is mine, like a ball of yarn that I need to untangle.

5: Jodi Lloyd—who gave permission to donate her husband’s hands—visited Mangino after the transplant. From the Boston Globe: Lloyd said she was “very nervous’’ and didn’t look at his hands at first. But Mangino spoke to her about grief and put her at ease. He asked if she wanted to touch his hands, and she did.

“They definitely felt like my husband’s hands, and I knew they were my husband’s hands because I recognized them,’’ she said. “It was bittersweet. We had been together 23 years. When he was in the hospital, all I did was hold his hands.’’
 
6: At home I use special utensils to help me grip my fork with my right hand. Last week I used my right hand to hold a regular fork in a restaurant for the first time. It did slip a fair amount. Neal often reminds me that many of my fellow stroke survivors have it much worse. “Some people would kill for that hand,” he told me a few weeks ago, pointing to my right hand. After a pause, we laughed.

7: And finally, this paragraph from the Boston Globe: When his son pointed out that he was walking with his forearms pointed straight out, Mangino studied people walking at the mall, swinging their arms at their sides. “You forget these things,’’ he said. “If someone gave you wings, you’d say ‘what do you do with these?’ ’’



Here's the full story from the Boston Globe, by Liz Kowalczyk

Richard Mangino's website, including some of his art: richardmanginoartist.com