Thursday, November 29, 2012


Right after the stroke, I had to practice saying (and spelling) my children's names. At this point, I still confuse the two names, but probably not more than other parents who don't have aphasia. But just to simplify, when one of my kids has helped me, I usually just say,

"Thanks, Sweetie."

The problem is, my brain can't switch tracks easily, even now. So when I want to thank someone--anyone--I often can't stop from tacking on a "sweetie" after the end. The cashier at the pharmacy, my neighbor who is twenty years older than I, the UPS driver--they're all my sweeties, now.

Friday, November 23, 2012

What's in a Name

Many people are puzzled why I called blog "My Happy Stroke." Even I forget why I chose the name sometimes.

So I wrote About My Blog's Name, partly to remind myself of what I was feeling in the early days of my recovery.

You can click on the link above, or on the right-side column on the homepage, after My Stroke Story.

Thursday, November 1, 2012

Mysteries of Stroke

I still have so many questions about the way my body works, post-stroke. Some are general, like why does cold make spasticity worse? Other are more specific to me, like what's the deal with my toes?

A lot of survivors have problems with toes curling under, making walking painful and making it easy to trip (see posts from Home After a Stroke, Up Stroke, Dean's Stroke Musings). In contrast, when I walk, my toes on my affected (right) side barely make contact with the floor (other than the big toe). My toes go up, as if I am trying avoid getting a splinter. 

Yet I do have a lot of spasticity everywhere, including in my feet. In some positions--often when I'm sitting up and putting on my socks, for instance--my toes often get all scrunched up, as you see in the photo on the right. (My unaffected side looks, well, normal and flat.)

I'm thankful that the position of my toes is not painful. It's also not causing me to trip. But I'm almost certain that it's affecting my gait for the worse.

When I ask different doctors some of these questions, I often get a shrug, literally or figuratively. Physical therapists are much better at answering these questions, but even PTs have been stumped about the toe issue.

But I still need answers to get better. Who will answer these questions?

Friday, October 26, 2012

Free At Last--Sort Of

I've started to tell people my good news: I passed my driving test in September.

"That's fantastic!" people say. "You must feel so free now!"

I'm very proud. It's a big milestone. But it's not as liberating as I wish.

It's partly that I'm still getting my confidence back as a driver. To feel comfortable, I have to plan the route ahead of time, mentally going through busy intersections, rotaries, and tricky parking lots. It's partly that the most simple errands are a lot more physical work now--from getting my coat zipped up to wrangling a shopping cart with my uneven strength. And it's also partly that I tire very easily, so I only drive around my town or the next one, for now.

But the biggest reason is that it's the first time that I've felt the weight of total responsibility since the stroke. Although I have responsibility for my kids when I'm alone with them, they are old enough that I don't have to watch them like a hawk. Driving is different. I've spent a lot of time in a rehab hospital over these years. I've seen the results of serious car accidents, and the wreckage of people's lives.

Saturday, October 6, 2012

Childhood, Revisited

The last time I walked to school with the kids with any regularity, my first-grader son would trudge along, and he often wanted to hold hands--even though I was pushing a stroller with my daughter in it, even though I was constantly urging him to pick up the pace.

I've started to walk the kids to school in the morning again, about once a week. My son, now 10 years old, dashes out the door as soon as he sees the neighborhood pack of boys walking up the street. I don't see him until after school. My daughter hesitates as I come down our front steps, then she hurries up the road to walk with her friend. She does want me to wait in line at school with her, so right before she gets to the school, she stops and waits, until she sees me and my cane.

I remember walking to school many years ago with my two sisters. I was the youngest. Every four or five steps, I would have to run to catch up. Sometimes I can hear my own childish voice:

"Wait, wait!" I say with panic in my voice, "I can't keep up!"

Thursday, September 13, 2012

Those Uncomfortable Feelings

A friend's mother had a stroke about nine months ago, and I've been getting updates about her for a while. I saw my friend a few weeks ago, and she mentioned that her mother has recently having gastrointestinal problems. My friend didn't go into details.

It brought back uncomfortable memories. After the stroke it could have been so much worse, but still: I have felt sick to my stomach so many days since.

I had one real GI crisis about four or five months after the stroke, when I was directed to take iron supplements, and Neal and I both misunderstood the directions. It took me about a week to figure out why I felt so awful: I was taking about 3 or 4 times the correct dosage. I had alternating bouts of diarrhea and constipation, and constant nausea for about 6 weeks. I lost more weight, which wasn't a good thing.

The whole stroke recovery has reminded me sometimes of being pregnant: a few periods of crisis, then this off-and-on stuff.  The threat of nausea is always there, even though I almost never get truly sick. My appetite has been very unpredictable. I've often felt like I have a low-grade stomach bug for more than two years.

In general, I'm feeling so much better these days. On bad days, though, I remind myself: I can deal with this feeling--the feeling that my body is a bit of a stranger to me. I'm getting to know this new version of myself. It's like a very, very long gestation. 

Monday, September 3, 2012

Three Blogs

I've never been a prolific writer, but in the summer and early fall--when my kids' routines are changing constantly-- my output slows to a crawl.

But I have been reading other people's blogs (and tweets).  Here are three blogs/websites that I've been enjoying for a slightly different angle on stroke recovery:

Finding Strength To Stand Again : Prosopagnosia (face blindness)

Blogger Tara Fall started to have seizures in her teens. At age 27, she had brain surgery to try to stop the seizures, but suffered a stroke in surgery. When she woke up, she couldn’t recognize any faces at all, including her own. Tara’s blog is an insightful look at an invisible disorder, prosopagnosia. She also talks about her life as a stroke survivor and a person with epilepsy.

Girl With The Cane : Disability Advocacy

Sometimes I’m so involved with my own recovery that I forget how many people are affected by other disabilities. Sarah Levis is a stroke survivor, but she addresses a broad range of disabilities in her writing. Her lively and informative blog is a great way to keep up with the disability community in general.

 Stroke XYZ : Young(-ish) Stroke Survivors

This new website/blog/e-community is geared towards younger (loosely defined) stroke survivors and their caregivers, families, and friends. Isolation--physical and emotional--is a huge problem for stroke survivors and caregivers of any age, so I'm always grateful for any new voices/communities. I'm also grateful for new voices talking about aphasia: Kelsae, the blog author and caregiver to her husband Mike, has blogged about aphasia and the ways that aphasia affects relationships.

 Happy reading!

Wednesday, August 15, 2012

Derek Who?

I got a phone message a few week ago. It was Massachusetts General Hospital Stroke Service. I was enrolled in a long-term study in right after my stroke, and it was time for my yearly phone follow-up. Each phone call involves about 15 minutes of questions. Some are health-related; other are tests of my speech and cognitive function.

Even though any neurological exam--including these phone calls--might differ a little bit, by now I know the kinds of questions I might be asked. So before the woman from MGH called me back, I did some work. Any good student tries to prepare, right? I made sure, for instance, that I didn't forget the vice president's name. I practiced saying "Methodist Episcopal" out loud. And since I still have some trouble with numbers (linked to my aphasia), I made a Excel spreadsheet that had a column of numbers from 100 to 65 by sevens to review, in case they asked me to count backwards by sevens. Just in case.

I felt very proud of myself. The phone rang.

I answered many questions: how was my health, in general? Have I had any more seizures? What day was it? Do I drive? What's my birthday?

So far, so good. The woman asked me the name of the president.

"Obama," I say. Easy.

"Do you remember his first name?"

Of course I do.

I know, for instance, that "Derek" is not the right name.

"Um, I know it," I say.

These days, I often see words in the inside of my forehead, when I'm concentrating hard. Unfortunately, the wrong letters--D and E--are blocking my view of the right letters I need.

"Oh, I know it," I say. I'm getting worried.

I know I could say it, if only the wrong letters would fade out. But they are bold, strident. I wonder if the woman on the other end knows that there's a wrestling match in my head? I finally pin down the bad letters. The good letters pop into view.

"Barack," I say, with a sigh of relief. It's a nice name.

Saturday, July 21, 2012


Every year we go to Maine, and stay in a cottage that my parents have rented for many years. Usually we don’t stay very long, but the cottage and the coast are a highlight of my kids' year.

Sometime last fall, the kids and I were telling a friend about the cottage.

“Mama, maybe this year you will be able to swim there!” my son said.

My heart sank. Neal and I often point out to the kids how much I’m improving. But it's still hard to explain to the kids about the all the unknowns in a brain injury. So I tried to say gently that I probably wouldn't be able to swim at the cottage this summer. Maybe for many years to come. Maybe never, I thought.

I was never a strong swimmer, and there isn’t a real beach near the cottage. Either you jump off the dock at high tide, or you go swimming in a rocky cove. To get to the cove, you have go through an uneven field of wild blueberries, then cross a short bridge over a swampy area, then walk down a wooded slope. You arrive in a cove strewn dried sea grass and large pieces of driftwood. You have to wear sandals or water shoes, to protect your feet from the stones, snails, and barnacles underneath. If you wade out through the seaweed, you can often see schools of small fish. My kids love it.

So a few weeks ago, we went to Maine. I didn't try to swim. I did go on a boat ride, though. And I had a great time on vacation. I felt relaxed.

Most days, I watched the kids and Neal or their grandparents setting out to go the cove to swim. I sat on the porch, reading and sipping coffee. I read guidebooks about Maine, daydreaming about the next vacation. I enjoyed listening to the sounds of the coast.

Sometimes I would think about my late grandmother, who went swimming well into her nineties, and I would remember her worn canvas sneakers she used as water shoes. I would think about how hardy my parents are, how they often swim twice a day. How Neal learned that there's no way to gracefully refuse to swim with my family. How my kids are swimming in the ocean.

And every so often I would think, how did I become the broken link?

Sunday, June 24, 2012


I wish English had a better word than "weakness" to describe the movement on my affected side. If it was just weakness, I would have been done with the recovery process a long time ago. Like many stroke survivors, I have a constellation of problems, in varying degrees: weakness, spasticity, lack of sensation, confusion of sensation, lack of proprioception, neglect, pain, etc.

Every so often, I use the word "hemiparesis." But it means the almost same thing as weakness. And it has too many syllables.

Another fellow stroke survivor and blogger, Lori, uses the word "gimpy." The word is growing on me. I think it has just the right amount of vagueness to describe the general weirdness with my right side.

So here's a video, filmed on 4/29/2012, of me doing one of my daily tasks--putting away utensils--with my gimpy hand:

Monday, June 11, 2012

So Long, Brace

I’m done with the brace. For now, at least.

This was my second brace, and my second try of getting off of a brace. So who knows, I might need a third round at some point. 

My gait is still uneven, and I still use a cane. And much to my disappointment (and my daughter's), I'm still wearing the same stupid Velcro sneakers.

For now.

Tuesday, June 5, 2012


I wrote a personal essay for the American Speech and Language Association's newspaper, The Leader. It's my first publication since the stroke.

Here it is:  You Can't Just Wear Socks!

Thank you, Rick and Jena, for your expertise but especially your kindness.

Tuesday, May 15, 2012

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. 

Friday, May 11, 2012

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.

Friday, April 20, 2012

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.)

Monday, March 26, 2012

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.

Wednesday, March 14, 2012

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.

Wednesday, February 29, 2012


"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."

Wednesday, February 15, 2012

Theme and Variations

February 2nd 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:

Friday, January 27, 2012

This Writing Thing

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.

Tuesday, January 17, 2012


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?