My Happy Stroke

Shrinkage

2012-02-29T16:22:00.000-05:00

"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

2012-02-15T10:49:00.000-05:00

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

This Writing Thing

2012-01-27T12:07:00.000-05:00

In a rough draft of my blog post about Thanksgiving, I wrote this sentence:

I have a lot of thing to be thankful.

Writing is much easier for me than even two months ago. But still, almost every sentence I write has a mistake--usually several. Sometimes I can't remember the word I want. Sometimes I leave out several words. My spelling is awful. But the thing that pains me most is the grammar: the confused word endings; the mixed-up genders; the wrong tenses.

So I usually re-read every sentence in a whisper before going on. I spotted an error in the sentence, fixed it, and then re-read it again:

I have a lot of things to be thankful.

I don't use a grammar checker, partly because I worry that if I don't correct errors myself, my language skills won't improve. But I was still sure that something was wrong. But what? I whispered the sentence to myself over and over, trying to figure out why it still didn't sound right: For thanksful? By thankful? To thankful? Ah, I know. I had left out the final word. I fixed it:

I have a lot of things to be thankful for.

But then a voice--a chorus of high school English teachers, actually--in my head said: never end a sentence with a preposition.

Was that really true, I wondered? But I heard the chorus, again: when in doubt, leave it out.

I deleted the sentence. Back to the blank screen. Damn this writing thing is hard.

Baseline

2012-01-17T10:13:00.000-05:00

Last week I had minor surgery. I haven't been hospitalized since Spaulding.

In the two years since, I've been trying to recover the many functions I lost: walking, talking, right arm movement. I've also been learning new things, things that I wouldn't have to learn if I didn't have a stroke: how to fill out medical forms with my left hand; how to be sure that an infection doesn't blossom in my right side, where I can't feel much; how to explain to the hospital aide why, no, I can't spell my husband's last name out loud.

After surgery, I had some crackers and ginger ale in the recovery room, trying to shake off the groggy feeling. After a while, the anesthesiologist came by again, wanting to know if I was ready to go home.

"Do you think you're back to baseline?" she asked.

Baseline? What baseline?

Thanks for the Hamburgers, Mitt Romney

2011-12-30T16:49:00.000-05:00

One day when Neal came home from work--about four months after the stroke--he asked about my day, as usual: did anyone visit? Did anyone bring dinner? I said "yes" to both.

"Who brought it?" he asked.

I considered the question. I was very happy to see the woman who dropped off dinner. Often she and I used to walk back from dropping our sons off at school. Although I didn't know her well, I enjoyed her sense of humor. I used to know her name, her son's name, and her two-year-old daughter's name. Neal usually relied on my memory for names and faces. But we didn't have a back-up plan in case of aphasia. Now I tried to think about how to tell Neal who the woman was.

"Like Mitt Romney," I finally said. Neal looked surprised.

"Mitt Romney dropped off supper?" he asked.

"No, like Mitt Romney," I said.

"Was it a he or a she?" he asked.

"A man. No, I mean man. No. Woman."

"So... a woman dropped off supper?" he tried to confirm.

"Yes."

"Like Mitt Romney," he repeated it, puzzled. "This person.... was a politician?"

"No."

"This person... lived in Belmont?" he said hopefully.

"No."

"Is a Republican?"

"Yes! Probably," I said. Although that wasn't exactly what I wanted to say, probably there were about five Republican parents in our school district, so that narrowed down the field. "You met the guy," I said. I hoped that Neal would remember he met the husband, and that they had a common acquaintance through Neal's work, and the coworker was Mormon.

"Oh," said Neal. "You mean ... that family, that's probably Mormon?"

I sighed with relief. At least one mystery--who brought dinner--was solved. Except that we still couldn't remember the woman's name that evening, I think, even between the two of us. Somehow I did convey that family was moving away, soon, and that I was sad to see them go.

Now I remember her name.

Amber, if you're out there, I miss you. The hamburgers were great.

Cooking the Beets

2011-12-08T19:22:00.000-05:00

Usually I think my memory was unaffected by the stroke.

Then it happens: something I used to do that comes back, almost without effort--and I realize that part of myself has been missing for almost two years.

Like last week, I was rummaging around the fridge, and saw that we had some beets that were looking old. My family loves beets. Neal and I love the taste; the kids love fact that eating beets makes their pee turns red.

I used to cook beets every so often--pre-stroke--after the kids were in bed. I would start them simmering, and them do something else: do emails; pay bills; write. It was very satisfying.

When I saw the beets last week, my hands got to work. I got the beets out from the fridge, turned the water on (with my right hand!) and put the beets on to boil. I put the timer on, then browsed the Web. Neal and I took turns checking on the beets, making sure that they weren't boiling over. When they were done, I slipped the skins off, and then put them in a container for salad for some other day.

There is no punchline here. No funny story about weird things I forgot to do, or a story about the kids' reaction. It's just about this feeling I have, that my mind is like a bicycle slowly changing gears upwards.

Click.

Happy Aphasic Thanksgiving!

2011-11-25T17:04:00.000-05:00

Yesterday--Thanksgiving day--I went for a short walk. It was a beautiful day. I saw a small group approaching from the other way. They smiled, and I smiled.

"Happy!" I said in greeting.

I was a little embarrassed. They were probably a little puzzled.

It's the thought that counts.

Aphasia, Five Weeks After My Stroke

2011-11-18T14:18:00.001-05:00

When I woke up in the hospital after the stroke, I couldn't speak, spell or read. I could understand a lot. One of the language centers, Broca's region, had been damaged in my brain.

This video clip shows what my speech sounded like, five weeks after the stroke, in March 2010.

(Note: It's hard to follow that I was trying to say, of course! I was trying to say--in a nutshell-- is: "my memories of those first few weeks are already fading. Your brain can't remember everything! But I also I think that I've been listening more intensely, especially the first week at MGH, because listening was all I could do." If you're bored, you could fast-forward it the end, to see my demonstration of my arm movement.)

My love and thanks for my family, especially Neal, are beyond words, especially for being there at that scary time.

Vocabulary Lessons

2011-11-04T19:49:00.000-04:00

I've starting to collect stroke-related words and phrases. Here are some my favorites:

Tone (noun): Specialized usage. Shortened version of the phrase "abnormally high muscle tone," or spasticity. The affected muscles are rigid and tight, which makes movement difficult and sometimes painful. Example: "I thought I was being complimented when my PT was talking about my tone. Now she's saying that if my tone doesn't get better soon, I might have to have Botox injections to relax my leg."

Cryptogenic (adjective): Of unknown or mysterious origin. Example: "All the tests came back negative; your case is cryptogenic. Basically we don't know why your brain started to bleed."

Perseverate (verb): To repeat or prolong an action, thought, or word after the stimulus that prompted it has ceased. Example: "The patient has severe aphasia and has been perseverating. She keeps repeating 'why?' even though her family has told her repeatedly that they don't know why she had a stroke."

Mindfulness

2011-11-03T10:01:00.000-04:00

Many times a day, I remind myself that I have to put weight on my right leg and hip when I am getting up from a sitting position. If I forget, I often sit down and try again.

Is this mindfulness? If not, what is it?

Progress

2011-10-25T21:23:00.000-04:00

Neal has always done his fair share of housework. But I usually did put his clean laundry away, just because it seems like a nice thing to do for your partner.

After the stroke, for many months the only thing I could do by myself was to put my underwear in the bureau, one-handed, while sitting down. Now I've progressed to sorting a whole of basket of my laundry, including hanging up my tops with my both hands (although with several breaks because of my fatigue).

Yesterday I put my own clean clothes away, and then even hung up some of Neal's shirts. Two of them.

Scrambled Mantras

2011-10-14T09:36:00.000-04:00

A lot of people have urged me to meditate, especially to help with my insomnia. Sometimes I try, but it's hard. Often I just concentrate on my breathing. Usually that helps.

One person suggested to me meditating on the mantra, "I am at peace." But let's be realistic: I'm not at peace. I'm a skeptic who doesn't like wishful thinking.

I was talking to a friend about meditation, who empathized. She told me she sometimes meditates on the simple phrase, "I am here." As the friend said, there's isn't much to argue about there. I thought maybe I should try it myself. I sat on the floor and closed my eyes.

"Here I am," I said in my head.

Every so often I forget I have aphasia. Until I actually try to say something, even in my head. I tried it again:

"Here am I."

Did I tell you that short phrases are the most difficult ones for many people who have aphasia, including me?

"Am I here."

Maybe I'll just go back to breathing.

Funny Feelings

2011-10-10T13:46:00.000-04:00

The other day I was writing at the computer. After a while, I got up and starting to walk into the kitchen. But I kept stumbling--which I don't do usually--as if my right leg wasn't working. I was scared. What was happening to me?

Then it hit me: my right leg had fallen asleep. If I really concentrated, I could feel a muted pin-and-needles feeling in my leg.

The warning signs of a stroke often include trouble walking, speaking or thinking. But what if you have all these problems already?

Journaling

2011-09-21T21:02:00.001-04:00

The other day I came across a short document on our computer. It 's dated April 2010, about seven weeks after my stroke. This was my first attempt of keeping a journal, post-stroke.

It's been a long trip.

Sat., March 20, 2010 
Dana (friend) ju came  casserole. Dana worried. The worried faces a 

Tuesday, March 23, 2010 

Charlotte;s Web was reading  a help fall bed. 

Sunday, March 28, 2010. Written by Neal at Grace’s request.
Grace notes that ifshe can read something to herself, she can understand it pretty well and getthe meaning. But is she reads out loud, she gets hung up on many of the words(especially the little ones) and has a hard time understanding the meaning. Forexample, she was trying to read the title of the book “Don’t Leave Me ThisWay”, and had a really hard time, especially with “This”. 

Thursday, April 08, 2010 
Jenny (babysitter) and the kidsnow.  (Myson) help jenny screen put in

Tuesday, April 13, 2010 

I’m so frustating. Ajust so any thing. 

The sound of one hand shampooing

2011-09-15T09:05:00.000-04:00

I have a fair amount of movement in my right (affected) hand. But my sensation isn't great, and even more troubling is my lack of proprioception. If I can't see my hand, sometimes I forget where it is.

I've heard that visualization might help. For example, when I wash my hair I use both hands, but concentrate on visualizing kneading my hair with my right fingers.

But sometimes my mind wanders. Then I realize that something doesn't feel quite right on my right side of my head. When I lower my right hand and look at it, I realize that I've been washing my hair with the back of my wrist.

Spelling Test

2011-09-10T20:58:00.000-04:00

Our little girl starts kindergarten on Monday.

On visiting day last week, she got her first "homework" assignment: draw a picture of her family, and write down--with help, of course--one thing she would like to do in kindergarten.

"Don't stress about it," her teacher said to the parents.

In the spring, I was still struggling with spelling things out loud. So I thought we would to do the homework--with Neal--this weekend.

But my girl was already to start homework by Friday afternoon. When I asked her what she wanted to do at kindergarten, she had a ready answer: play with the toy food. She wanted me to spell it, out loud. The whole phrase.

I took a deep breath, and starting spelling. Very slowly.

"Mama, I can hear you saying the alphabet before every letter," she said.

But I did it. We're ready for kindergarten.

My New Roles

2011-08-21T16:54:00.000-04:00

Sometimes kids are fascinated by my brace. I can see the gears turning: is her leg real? Can she take her leg off? Does it hurt?

"This is a brace," I tell the kids, if I have enough energy to talk. "It helps me to walk. It doesn't hurt, but my leg doesn't work very well right now."

The other day I was walking without my brace, but very slowly and leaning on my cane. I saw a woman with a dog coming down the road on the other side. As I approached, the dog--who looked young--started to bark loudly at me.

"Hi Pooch!" I said, in a friendly voice.

The dog immediately stopped barking, and started to wag his tail. The relieved owner crossed the street to my side, and apologized to me.

"You know about canes!" said the woman to the dog, gently scolding him. "It's nothing to be afraid about!" The dog licked my cane and me.

I guess that one of my new roles is being an ambassador from the disabled world to the young, including dogs. I don't mind.

August

2011-08-12T11:30:00.000-04:00

The kids are at home most of August. We were traveling. Our fantastic babysitter/housekeeper has gone. I hate hot weather. I don't have much time to think, let alone write.

Thank goodness for the cicadas and crickets. When I feel overwhelmed, I try to go out on the porch, and listen. They're oblivious to me, but their songs calm me down.

Adventures

2011-07-25T13:18:00.003-04:00

When I was young, my family lived in Tokyo for a year. I didn't speak Japanese. But I had a good sense of direction, I loved maps, and I loved independence. After school, I often rode the trains to other parts of the city to explore. Alone. I was 11 years old.

Last week, I made my first outing without any help at all since the stroke. I made an appointment with a doctor, myself; the next day, I called the cab to go see the doctor, myself; I spoke to the doctor, myself; I called the cab for the way home, myself. The trip was two miles, round trip.

I know that I could have done it a few months earlier, if I had to. But I'm still scared that I won't be able to get home. I can't walk very far. What will happen if my words fail me, as they sometimes do when I'm stressed out? What if I can't spit out my address? My husband's phone number? My name?

Aphasia is much more scary than being a 11-year-old girl alone in a foreign city.

Subject: Aphasia

2011-07-10T12:15:00.000-04:00

Neal and I went to the library last week.

It was exciting for me to have enough language skills and energy to make a trip to the library worthwhile. I even remembered to prepare a list of books ahead of time.

The only problem was, I forgot the list. When I got to the library, I couldn't remember the titles in the list. I wracked my brains. I couldn't remember the authors.

But I did know one of the general subjects I wanted to read about: aphasia. So I sat down at a library computer with a catalog. Under the subject heading, I typed "aphasia."

Here was my answer:

Aphaniptera -- See Fleas

        Your entry aphasia would be here

Aphganistan -- See Afghanistan

Over a million Americans are suffering with aphasia. Doesn't aphasia merit even a line?

Home Together

2011-06-28T11:06:00.002-04:00

On Thursday I spent the morning and early afternoon with my daughter.

It was the first time since the seizure--almost 10 months ago--that I was alone with her for more than an hour or two.

We read. I wrote a couple of emails. She played with her dollhouse. We went for a short walk. We had gooey sunbutter sandwiches for lunch.

"I'm bored," she said, as morning turned into afternoon.

It was a boring, perfect day.

My Mother's Visits

2011-06-19T19:25:00.000-04:00

I saw the photos of Gabrielle Giffords the other day. The camera focuses on Giffords' beautiful smile. Her mother is the background, maybe a little care-worn, but smiling.

I don't know if we have many photos of my mother and me together from those six weeks when I was at the hospital and in Spaulding. But my mother was there, every day. If we had a photo, probably you would see my mother smiling proudly, maybe after she had pointed out my latest accomplishment.

For me, a lot of those days blur together: the parade of visitors, the endless procedures, the night awakenings. I do remember that after other people had left, often my mother would stay. As I drifted into and out of consciousness, she sat in a chair by the foot of my bed, quietly reading magazines.

Every so often I would open my eyes, on the cusp of sleep, wondering if she had left.

She was always still there, quietly sitting.

Laughter Therapy

2011-06-06T11:43:00.005-04:00

When I was at Spaulding, a music therapist visited me, partly to see if it would help me with my aphasia. She wheeled me down the hall to the lounge, and set up her guitar and music stand.

"Do you like the Beatles?" she asked.

Not really. But I knew some of songs, so I nodded. We started to sing--mostly humming, for me--but I thought my voice sounded awful. I made a face of disgust. The therapist looked worried, and flipped through her music.

"Do you know 'You Are My Sunshine'?" she asked.

I wanted to tell her, Sometimes I used to sing that song when I was putting the kids to bed. I also wanted to tell her that the lyrics are actually pretty sad. Especially the Johnny Cash version. I think he had recorded it after his wife, June Carter Cash, had died, and his voice was ravaged from old age and heartbreak.

I started to cry.

The music therapist scurried out to find some tissues. I could see her through the glass door, and a few minutes later I saw her coming back down the hall. She tried to open the door. It was locked.

Don't worry, I wanted to tell her. It wasn't like I needed to be somewhere. I started to laugh.

She pantomimed that she would be right back. She returned with another staffer, who looked puzzled. Still no key. There was more commotion in the hallway.

Now I was really laughing, so much that I was tearing up from laughter.

Finally, someone from the maintenance crew arrived. He found the right key, opened the door, and left. The music therapist wheeled me back to my room, apologizing the whole way back down the hallway.

She was apologizing so much, in fact, that she didn't realize that that was one of the best therapy sessions I ever had at Spaulding.

May Is National Stroke Awareness Month

2011-05-25T16:56:00.000-04:00

The National Stroke Association has been encouraging survivors, family members, health professionals, and anyone who has been touched by stroke to submit their own stroke story on their website.

Here's my stroke story.

Fellow bloggers, share your stroke story!

Compliments

2011-05-17T21:01:00.000-04:00

When someone compliments my daughter--how high she can jump, for instance, or how well she can do the monkey bars--she says, "Of course I can! You know, I am 5 1/2 years old."

Sometimes when I see someone who I haven't seen for several months, they comment about how much my speech has improved. I'm always grateful for the acknowledgement. But every so often I think, "You know, I am 47 years old."

Spring

2011-05-09T21:16:00.001-04:00

Some of my words and memories still seem to be lying dormant. Then when conditions are right, they poke up into my consciousness.

Last week my sister came by to prune my rosebushes. Then we walked around the yard. I'm not a great gardener, but when she commented about a particular plant, I was delighted that I could remember the name. That's sweet woodruff, I said. I started it from a few sprigs many years ago.

Almost every day I walk around the garden now, and almost every day I remember more: bleeding hearts, that I almost pulled up that first summer in our house; irises, that my friend brought from Philly, nine years ago; the peony, that never blooms but always looks on the verge of it.

These are my memories, my words, I thought proudly. My garden.

Lost in Space

2011-05-02T20:34:00.001-04:00

A few weeks ago, I ordered some new shoes to go with my new brace. Neal filmed me walking to try to figure out if I'm walking correctly with the new shoes.

When I watched the video, I was surprised. I looked liked a person who has a limp, but it wasn't too bad. Sometimes I have a slight circular motion with every step.

But with either new shoes or old, I feel like each step is stepping into the void. I have some sensation, but a bigger problem is this: I know my right leg is somewhere, but I don't know where. It's like my brain and my right leg are trying to call each other, but each call is met by static.

Isn't any wonder why I'm so tired?

Sequencing, Part 3

2011-04-22T16:42:00.000-04:00

A few days ago, my son was talking to me while I was preparing my breakfast. I got out the Cheerios box, put cereal into my bowl, and got the milk out from the refrigerator. Then I poured some milk into a bowl.

OK, I poured the milk into the wrong bowl.

But sometimes I wonder: do I do these things because I have a brain injury, or because I'm a mom of young kids?

Before and After

2011-04-18T09:13:00.001-04:00

My son is helping me to put photos in an album.

"I wish you didn't have a stroke," he says, looking at the photos of our family from a few years ago. "You were more fun then," he says, with a hint of sadness.

"I wish I didn't have the stroke, either," I say.

But I try to tell him that all these experiences becomes part of who we are. When I was growing up, I tell him, there were things that were very hard for me at the time. Maybe some good things came out of those experiences.

Right?

What Comes Around...

2011-04-10T18:09:00.003-04:00

One of the frustrating about aphasia for me is the lost opportunities to make snide remarks. I'm too slow.

A few days ago, Neal and I were driving, and the Diane Rehm Show came on NPR.

I couldn't say it, but I wanted to say: a southern drawl is nice, but she sounds like a southerner on a big dose of tranquilizers. Or: isn't time for her to retire?

Neal was about to turn off the car. I was still trying to formulate a witty remark.

"I wonder if she had a stroke," Neal said.

I hadn't connected the dots. Her voice sounds a little like... mine, I realized. But without my grammatical mistakes.

That evening we went online to find out about her. Diane Rehm has Focal Dysphonia, a neurological disorder.

One of the good things about aphasia is that sometimes I'm too slow to make stupid remarks.

The Invisible Line

2011-04-05T15:26:00.000-04:00

I'm still getting used to my healing body. Or rather, my brain.

There are things that still surprise me, especially with my sensation.

If I trace a line with my finger across my waist--or anywhere on my body--from left to right, my sensation is suddenly muted when I cross over the midpoint. For some reason, I always think that my sensation should fade slowly, the further I go to my right side. But instead it's like a switch with two settings. My left side is on the brighter setting. After I cross over my middle, the light is dimmer.

Slowly, over the course of months, maybe years, the light is getting brighter. But I don't know if the two lights will ever be equal.

Modified Constraint-Induced Movement Therapy

2011-03-27T21:05:00.001-04:00

For the last two weeks I went to Spaulding everyday to try to recover more movement for my right hand. I did a program called Modified Constraint-Induced Movement Therapy (M-CIMT).

Warning: this post is much longer than usual. I wrote this summary since some stroke survivors I know were curious about this program, especially since the price is so reasonable.

The program

Every day from 1 - 3pm, five stroke survivors, including myself, gathered around a big table. After our occupational therapist (OT) led us in some stretching (both hands), we were asked to put our less-affected hand in our lap.

Then the fun began.

We would warm up by rolling a ball to each other for about 15 minutes. Then the OT and aide opened the big cupboards behind us and brought out the toys: jumbo pegboards, little pegboards, puzzles, games, kitchen utensils, beads big and small, cards, etc. There were other toys that only an OT would have: hand putty in all grades of resistances, adaptive writing tools, stacking cones, the Amazing Clothespin Contraption, and my favorite, a little "skateboard" for a hand.

The OT would picked out the things that she thought would help the most, depending on the individual person and problem she was working on at the moment. Usually we worked alone or in pairs, and then switched to new activities after 15 or 20 minutes.

Every so often if someone was struggling to remember to use only their affected hand, the OT would bring out the big mitt to constrain their "good" hand. Other times we did bi-manual activities, so the mitt was irrelevant.

After two hours most of us were exhausted. Before going, we had to bring out our checklist for activities for the evening or next morning, for a total of two hours. For instance, some of activities I worked on were: turning pages; stringing beads; tying a bow; playing scales on the piano. For another person, the activities might include drinking from a plastic cup with a handle; eating finger foods; wiping a table with a circular pattern; using a rolling pin with both hands.

Five hands, five different recoveries

We were all very interested to see how different our problems are--and also similar. For instance, I and another person were always dropping things. Another person could inadvertently crush a water bottle in his hand; his challenge was to pry his fingers off it. My sensation is diminished, and another person reported that his sensation had just returned after two years, apparently very suddenly. Most of us had shoulder issues.

As a 47-year-old, I was the youngest participant, but no one could be called elderly either. Most of the people were working before stroke. (I wasn't working at the time of my stroke. But parenting young kids is hard labor, either paid or unpaid). I think every one was at least one year post-stroke.

My decision to participate was partly a financial decision. Although my hand is partly functional, I need a lot of therapy before I will be anywhere near back to doing normal household tasks. (Playing piano--which I used to do--is another whole level) . We had two options to pay for the group: use insurance, or private pay, which had a flat fee of $40 per session ($400 in total). Given that there's a chance that my insurance won't authorize more than a handful of visits this year, the group bought me a lot more therapy for my buck.

By contrast, the Taub Clinic, the pioneer of CIMT, charges $6000 for two weeks of half-day private treatment.

Our OT told us: "this isn't a magic cure." You have to work incredibly hard. But hopefully this can help people by jump starting their recovery, or this phase of their recovery. For me, the best part was that I got a lot of ideas to challenge myself at home. The moral support from other stroke survivors was incredibly helpful.

As always, the therapists at Spaulding were fantastic. They were so skilled with figuring out how to help each individual the right mix of encouragement and sensitivity. And humor.

Bad Brain!

2011-03-11T09:58:00.000-05:00

My daughter wanted me to read "Amelia Bedelia."

Do you know how many ways you could say this name?

I came up with these ones, for example, when I was reading aloud one day last week:

Amela Bedila
Media Bedelia
Anealia Dilia
Melia Belia

When my daughter was laughing so hard that she had tears in her eyes, I finally gave up.

"I'm trying to say it," I said, "but my brain just can't handle this name."

She frowned.

"Bad brain!" she said.

Ode to a friend

2011-03-06T12:07:00.000-05:00

I was shaken by the news that Bob Slate, the Harvard Square stationery store, is closing.

Before the stroke, I would make a pilgrimage to Harvard Square every so often to buy the notebooks that I couldn't buy anywhere else.

Never mind that I've become a proficient one-handed typist (hopefully two-handed, soon). I still thought that I would go back one day to buy a new notebook for my journal, which I've kept since I was a teenager. One day--when my handwriting isn't so painfully slow, when my sentences are not filled with grammatical errors, or when I've decided to be a lefty forever--I thought that I would celebrate by make a trip to Bob Slate, for old time sake.

Goodbye, Bob Slate. Goodbye, handwriting.

Little goals

2011-02-28T10:33:00.000-05:00

I set goals, with my therapists and by myself. For example, by April I want to walk to my son's school at least two days a week. By the end of summer I want to type with both hands, all the time.

Other goals are smaller. This week I've been working on licking my lips on the right side. I hate realizing that I've been walking around all day with a crust of toothpaste right below my mouth.

Theatre of the absurd

2011-02-22T17:39:00.000-05:00

Last week I didn't sleep very well. In addition to my usual sleep issues, I couldn't stop thinking about Serena Branson, the TV reporter who had a "neurological event" on the air.

Thankfully, she seems fine. Her doctors say she had a complex migraine, not something more serious.

But last week, as I watched the clip, it looked a lot like a stroke, or maybe a TIA. As her speech descended into gibberish, Neal and I had flashbacks about our own nightmarish event. I was pretty certain that Branson's eyes were telegraphing bewilderment and terror.

So I was even more horrified that I couldn't help myself from laughing about the phrase she uttered, "a very, very heavy burtation."

I didn't really understand the word "absurd" until I had aphasia.

(The New York Times "Well" blog and the Serena Branson clip is here)

Sore Loser

2011-02-12T21:01:00.000-05:00

One evening this week Neal suggested a game of Candy Land for the whole family. With aphasia, there's twice the fun. For some of the players.

On my turn, I pick a card.

"Red," I announce. I start to move my piece to the next yellow square. My boy starts to laugh.

"Mama, it's yellow!" I know. I start to blush.

We go around the board. It's my turn. It's just a game.

"Purple red!" I say. Shrieks of laughter.

"You said 'purple red.' It's 'double red'!"

It's my turn again. Who wants to play checkers?

"Green," as I put my piece on the next yellow square. Howls of mirth.

I've always hated Candy Land.

Snow day

2011-02-06T16:15:00.003-05:00

These snow days are wearing us out.

On Wednesday, L. was tired after a long day of playing in the snow. I was tired of being cooped up inside. Neal had shoveled for four hours. As dusk fell, he was about to collect our son at a neighbor's house.

"You have to stay with Mama," Neal said to L. As Neal walked down the street, she started to erupt.

The full wrath of a five-year-old can be terrifying. My right side is weak, and I was worried that her kicks would knock me over. I told her she needed a time-out, and I left the room.

But her yelling and kicking escalated into a feverish pitch.

"Don't leave me! Don't leave me!" she screamed.

I sat down on the couch again, next to my flailing daughter, trying to catch my breath.

I won't leave you, I told her. I won't leave you.

Whole-Year Day

2011-02-02T20:35:00.000-05:00

A. came down in the morning and told us, "it's Ground Hog Day!" He also told us that it's Half-Way Day, where the kids at his school celebrate the mid-point of the school year.

It's also the first anniversary of my stroke. Should my family and I celebrate? Mourn? Meditate? Pray?

Maybe all of the above.

Vending machine therapy

2011-01-27T17:20:00.001-05:00

I bought a snack from a vending machine today for the first time since the stroke. Since January 2010, to be exact.

I didn't realize how complicated this process is: reading a random combination of letters and numbers; putting things in the right sequence (put in money first or push the button first?); math; some physical work (bending to retrieve the snack); and finally, opening the package.

Sometimes I feel triumphant when I can do things again. Other times I feel like an alien who's just landed on earth.

Lunch

2011-01-20T16:54:00.000-05:00

When I'm alone, sometimes I make a sunbutter and jam sandwich. (My son is allergic to nuts).

I'm used to the mess. But sometimes my brain doesn't recognize my right hand. So when I lick my right hand to get the sunbutter off, it feels like I'm licking someone else's hand.

Kinky.

Date night

2011-01-15T11:47:00.004-05:00

Neal and I had a date on Sunday. We talked about the usual stuff. The kids. Work. Schedules. Brain injuries.

Although the circumstances are very different, the shooting of Congresswoman Giffords in Arizona brought back our memories about my stroke. Mostly Neal's memories, since it was too early for me to realize what had happened, or that I was traumatized. That came later.

But Neal knew that our lives had been upended. Brain injury survivors and their partners can share some of the burdens, but we have such different journeys to make. Now almost a year has gone by, and Neal and I are still adjusting to our new shared reality.

Our hearts go out to the shooting victims and their families.

Pudding for dessert

2011-01-04T10:50:00.003-05:00

We have two great helpers/babysitters. One of them is fairly new to the job.

Usually, I type my shopping list, then one of them does the shopping. Yesterday I typed a list, but was too tired to write some specifics. So I told her what I wanted. I thought.

She came home with three gallons of milk. When she saw my puzzled face, she told me that she thought we usually bought two gallons, but I did say three.

Welcome to Aphasia-Land.

New Year

2011-01-01T21:25:00.010-05:00

My mom forwarded something to me from a family friend with quotes about the New Year, including this one:

“An optimist stays up until midnight to see the New Year in. A pessimist stays up to make sure the old year leaves.”

The stroke happened in February 2010. Call me a pessimist, but I'm really glad that 2010 is over.

Santa Baby

2010-12-20T10:19:00.000-05:00

Even though I wasn't in a high-risk group for stroke--I was healthy, walked a lot, normal blood pressure, comparatively young--I'm very aware now of risks of stroke in other people. Whenever I see someone very overweight, I worry for them. I want to tell them, "don't kid around! You don't want to go through what I've been through."

I'm probably overreacting. A few nights ago we were watching TV. Whenever I saw another rotund Santa in an ad, I thought: there's a stroke waiting to happen.

Broca's neighborhood

2010-12-08T10:41:00.001-05:00

Many years ago, I lived in Paris. My friends and I would often congregate at another ex-pat friend's apartment, which was centrally located.

The apartment was on a street named rue Broca.

After the stroke, people explained to me that I had aphasia. But it wasn't until when my brother-in-law--who is a doctor, and a very kind one--showed me his Ipod with an app that had a diagram of the brain, where I saw a label: Broca's region.

When I saw Broca's name, it was as if I saw an old friend again. Of course, in a different context.

Testing, testing

2010-11-30T20:40:00.000-05:00

Today Neal and I went to a psychologist for testing as part of the process to apply for disability.

The woman at Social Security and the psychologist kept using the word "deficits." Usually I think of "deficits" in the context of budgets; I don't like the word when it's applied to me.

The doctor didn't have to search far for deficits: I couldn't say the year, although I explained that I could write it, and I did. The testing was very tiring, but it was interesting. It was the most thorough test of my memory since the stroke.

Although my pride was wounded, I think I'm a shoe-in for disability.

Babes in the woods

2010-11-26T12:08:00.085-05:00

These days L's favorite friends are two Beanie Babies called Chips and Nut. No, I meant to say, Chip and Nuts. Or are they Nut and Chips?

Several times a day I'm corrected by a testy five-year-old who is very particular about singular vs. plural. I'm certain that a malevolent person at the Beanie Babies company made up the names especially to torture a parent with apraxia.

Chip and Nuts: friend or foe?

Happy... Happy... Happy...

2010-11-14T12:26:00.002-05:00

Today is my dad's birthday. Although we see each other at least two times a week, I want to phone him today to wish him birthday greetings.

Me: Hi Dad.
Dad: Hi Grace.
Me: Happy... happy.. happy...

The word is sticking in my mouth, like a huge sneeze that can't quite come out. I know that "Thanksgiving" is the wrong greeting, but the word is blotting out any other words in my mind.

Dad: I know what you are trying to say.
Me: Happy Birthday!

Happy birthday to a giving, patient, loving dad.

Frustration is the mother of progress

2010-11-07T09:23:00.000-05:00

Sometimes I'm too patient. But even I have my limits, like this week when I was face-to-face with a bowl of left-over Halloween candy. Alone.

I'm sure that my OT will be pleased that I can cut--especially candy wrappers--with scissors now with my right hand.

My Happy Stroke - Not

2010-11-04T19:41:00.000-04:00

One of my doctors at MGH said right after the stroke, "in nine months, it will be a bad dream."

So it's been about nine months.

Even without the insomnia, the iron problems, the seizure, and other littler problems, I think the doctor was overly optimistic. I still have a good prognosis (I hope), but the time scale was way off.

It's like climbing a mountain, with a lot of false peaks. The more I feel like my old self, the more I realize how far I have to go.

Moving on

2010-11-01T20:36:00.001-04:00

I hate good byes.

We're finally moving my therapy from Spaulding Boston to Spaulding Medford, which is closer for us.

On Thursday I had my last therapy at Boston. I cried. (My speech teachers have reassured me that one of the after-effects of a stroke often is some heightened emotional volatility; in turn I've reassured them that I was like this even before the stroke).

To Varsha, Rick, and Jenna, thank you. You are all so skilled, involved, and most of all, kind. I could go on about the ways you have helped me, but then I would start crying again.

Sequencing, part 2

2010-10-15T17:01:00.001-04:00

Here's a scenario:

You have a runny nose. You locate a tissue. Then you blow your nose.

What do you think happens if you have some sequencing issues?

This time I won't include a photo.

Pep talk

2010-10-14T09:43:00.001-04:00

Yesterday my father took me to the acupuncturist, Mr. Cheng.

Although my sister and father warned me that this person would be all business, he seemed very kind. Both times he ushered us to the office, motioned me to the exam table, and then said, "here's a chair for Daddy."

He examined my arm, and then he basically said, your recovery is up to you. Then he put a lot of needles in to me. Afterwards I confessed to my dad that some of the needles seemed a little too close to my spine. Fortunately, I didn't see most of them.

These days I've been having a really hard time, especially with sleep issues. But a gentle reminder, delivered with sympathy, helps me: my recovery is up to me. And of course, with a lot of support from family, friends, and therapists.

Methodist Episcopal, part 2

2010-10-04T11:37:00.000-04:00

On last Monday, I had an appointment at the neurologist. She seemed satisfied with my progress, although it's disheartening for me. My strength took a backward step since the seizure.

I had to do the usual neurological tests. In one of the tests, I'm supposed to close my eyes, put my right hand straight out, and then try to put my right hand on my nose.

When I opened my eyes, my right hand was about to crash with my left shoulder.

I hate this test. It's one thing to lose your keys. But it's another thing altogether to lose your hand--even for a few minutes. It's profoundly embarrassing.

At least, I did better on an another test, an apraxia test: I could say "Methodist Episcopal," even if it wasn't flawless. Maybe I'll switch denominations.

The walk

2010-09-20T20:01:00.000-04:00

I did it.

I walked A home from school. I'm totally exhausted.

I was worried that A would be embarrassed by my cane, but he had his sweet smile when he saw me. So sweet.

Cranio-what?

2010-09-13T21:10:00.000-04:00

One of the specialists we saw last week was looking over the notes about my stroke and said, "I see you had a craniotomy."

Craniotomy?

I know that I had brain surgery, but I didn't realize that it's called a craniotomy. The image that comes to mind for me is a slightly unbalanced Victorian surgeon, indulging his curiosity by drilling holes willy-nilly in his patient's skull (apologies to the fabulous Dr. Tierney).

I'm sure this procedure has come a long way since the Victorian times, especially at MGH. Still, I'm glad that I wasn't awake during the operation.

Seizure

2010-09-08T21:05:00.001-04:00

Two weeks ago I had a seizure.

When I came to, I first thought that the nightmare happened again: another stroke. Fortunately, it was only a blip. But the anti-seizure meds have been slowing me down, and I'm still not back to normal.

Now our plans are up in the air. We thought that I could handle caring for the kids, but we're not so sure now. We think A could handle calling 911 if I had another seizure, but it's a lot to ask a 8-year-old.

Goodbye, Urvashi

2010-08-23T10:54:00.000-04:00

Torturer. Slave-driver. These are some of names I call my physical therapist, Urvashi. But actually, she's been great. She works me hard but always makes me laugh.

So I'm a little sad that Thursday I finished with PT. I'm also worried: I still have a lop-sided gait; a ten-minute walk exhausts me; and my knee is very, very wobbly. But Urvashi says that I'm much stronger, and I can do most of the exercises by myself. She also said that my gait will improve as my sensation returns, and maybe I will need more PT down the road.

I will miss her.

R-R-R-Rip

2010-08-12T20:18:00.000-04:00

I like Spaulding, and I have great therapists. But the highlight of my trip is going to the bathroom.

Specifically, using the paper towel dispenser.

Until about three weeks ago, I didn't have enough strength or coordination in my right hand to rip off the paper towels. Now I can finally do it. It's so satisfying.

R-R-R-Rip!

Stroke reunion

2010-08-11T11:01:00.002-04:00

At Spaulding I went to a "Stroke Reunion" on Sunday with my mom. I met some young-ish stroke survivors, including a woman who had kids about the same age as my kids. It was strange to listen to other aphasic people.

One of the speakers--he was a stroke survivor--called us "our Tribe." I like that. Calling us "our Tribe" has a mystique, like a secret handshake. It's not far from the truth, if we can shake a hand at all. (Neal also suggested the term "stroke-empowered woman.")

In the news, there was an obit for the actress and stroke survivor Patricia Neal on Sunday in the NYTimes. There was a great quote:

"When Ms. Neal could not understand a Beatrix Potter book she was reading to her son, her husband told her not to mind because The Tale of Pigling Bland was 'Potter’s toughest book.'"

Indeed.

Still not quite ready for prime time

2010-08-02T20:42:00.000-04:00

It's been six months since my stroke.

Last week I added two accomplishments: tying my shoe laces, and hugging Neal--with both my arms.

But I wish that my progress could be faster.

This evening, for example, I had some sequencing problems. Here's a piece of pie that I served myself with ice cream:

Note to self: microwave the pie then serve the ice cream.

(Thanks to Brain Injury X-Posed: The Survivor's View for inspiration) .

Methodist Episcopal

2010-07-27T15:50:00.000-04:00

Last Sunday I went to church. I've been to church about 3 times since the stroke. Last time I realized that they're still praying for me every Sunday, so I asked them to remove me from the list. But another parishioner suggested that we should do a prayer of thanksgiving for my recovery, so we did that on Sunday.

I'm relieved I'm off the list so that I won't hog all the prayers. And yet,
I think I'm only about half-way recovered. Is there a prayer continuum for someone like myself? Sort of a prayer backup plan?

Let me out, let me out!

2010-07-24T12:09:00.002-04:00

I really miss reading aloud to my kids. A lot.

I do try to read for L, since she's not too picky. But her older brother is too impatient to listen to my halting diction.

But sometimes, even L starts to be impatient with my aphasia. Last week she wanted me to read The Three Little Pigs, but it's hard to be convincing when the evil wolf sounds like this:

me:"Little Pig, Little Pig, let me out!"
L:"...you mean, Let me in."
me:"Or I will puff and I will puff and and I will puff!"
L: "...you mean, Or I will huff and I will puff or I will blow your house down!"
me:"And then I will eat you!"
L:"...you mean, I will eat you up!"

Of course, L has her own speech issues, but that's another story...

Summer reading

2010-07-15T20:49:00.003-04:00

I've been reading a good book. It's a slightly trashy read, but very suspenseful. But the only problem is, I can't say it. I mean, I really can't say it.

I can write it: The Da Vinci Code.

The first two words are apparently too close phonetically, because I can say 'the,' or 'Da,'but not 'The Da'. When I try, it sounds like 'The (--a pause--) Vinci Code' (then a expletive when I've failed to say it, again.)

Self knowledge

2010-07-07T14:40:00.000-04:00

This morning I was combing my hair, and I realized: I've been combing it on the wrong side for five months.

Of course, for a while I didn't have hair on the left side, just a big scar with peach fuzz. Still, I can't believe that I took so long to figure it out.

Five months

2010-07-03T16:40:00.000-04:00

I went to the basement and put the laundry in to the dryer for the first time in five months. I don't know if I should rejoice--or not.

My sisters

2010-07-02T21:00:00.001-04:00

My sisters are very good to me.

My sister Deborah was visiting over the weekend, and cooked me (and the crew) a delicious steak. This last semester she cooked several meals for me, actually, in between jetting to Haiti, Jamaica, etc for research and her home base in NC. And she always remembers to make hollandaise sauce for me.

My sister Cindy has been fantastic, too, in the whole ordeal. Some of the things she has helped me during the last five months: arranging a haircut (several, actually); flossing my teeth in the hospital (I tried to not bite!); hiring great helpers; playing "20 questions" when I couldn't find the words; the list goes on...

One shoe off, one shoe on

2010-06-28T13:37:00.002-04:00

Yesterday when I was waking up from a nap, I could feel my left foot was bare, but I was sure that I forgot to take my right sock off. When I sat up, my right foot was in fact bare. I had a nagging sense of disappointment all day that I can't still feel my right leg (and foot).

I will eat my kids

2010-06-20T17:42:00.001-04:00

One of the weird problems about aphasia is I'm always saying things that I didn't mean to. For instance:

"I will eat my kids."
"I command you" (Said to Neal. Of course, he could say that I said this even before aphasia.)
"How are your kids?" (Said to Mark, my dear cousin who has no kids.)

And of course, "This is my mom," when I'm introducing my dad. He's used to it.

The Oracle Speaks

2010-06-15T15:52:00.002-04:00

My parents invited us to their block party yesterday. My parents' neighbors hadn't seen me since the stroke. Someone put a chair in the road for me, and a crowd begin to form in front me, as if the oracle was waiting to speak. But this oracle has aphasia! I did managed to say, "I am hungry."

Five Little Monkeys Jumping on the Bed...

2010-05-28T21:28:00.001-04:00

I did it! I sang with L at bedtime. I mangled the lyrics, but L cut me some slack.

The song book that finally got L and I singing was her preschool song book, from two years ago. The lyrics were very (very!)familiar, and sometimes I could fudge it, if I need to.

Lindsay Wagner, eat your heart out

2010-05-26T10:42:00.000-04:00

Yesterday Cindy and I went to the hospital to wire me up with a Holter moniter, in just in case there's something funny with my heart. Neal said I look like the Bionic Woman.

Two aphasiacs walked in to a bar...

2010-05-23T11:08:00.001-04:00

Today dad and I went to an aphasia support group and picnic. As my therapist said, a group of aphasics can be really loud!

I go to speech therapy for my aphasia 4x a week with my great teachers at Spaulding. For example, this post took me about an hour (even more) to complete.

Aphasia (pronounced /əˈfeɪʒə/ or pronounced /əˈfeɪziə/) is an acquired language disorder in which there is an impairment of any language modality. This may include difficulty in producing or comprehending spoken or written language. (From Wikipedia.)

Boston University has an Aphasia Resource Center that's been running for 20 years.