Sunday, February 1, 2015

Ground Hog Day

I had my stroke five years ago on Ground Hog day.

I don't think I realized that my life had probably changed forever. How can anyone be prepared for such a radical change? Mercifully, I was in a fog. Also, I was also focused on getting through every day.

The fog is still clearing. I have made huge progress in five years. Daily life is still frustrating, but my life is OK. In fact, I have some pretty great days. I'm not so overwhelmed by fatigue every day. Although it might sound strange, I enjoy many of the challenges of recovery.

I still feel guilty about making all this extra work for my husband. But, as he has said many times, it's not like I asked for a stroke. I also get really sad about the time I've missed with my kids. But when I look at photos of them with my extended family, I get teary: my children got so much love from all the other people in their lives.

On this anniversary, I'm going to make it official: I'm taking a break from blogging. I have so many projects that had been on hold, and now I finally have the energy to tackle some of them.

The blog has been great therapy.  I had just enough language and cognitive skills to get the blog going. It helped me work on my language, and it helped me feel connected with so many people. For a long time, it was hard for me to have a conversation in real time, but I could write--in a slow and painstaking way--about my altered life. The blog helped me to be heard.

Thursday, July 24, 2014

Problem Solving

I'm a tall person, and I think of myself as fairly resourceful too, so I'm always surprised when I can't figure out how to get something from our high kitchen cabinets now.  It was never a problem before the stroke.

Obviously it's harder physically now. But I think there's something else going on. Maybe mild cognitive impairment? Or learned helplessness? Or mind-body connections that are still being forged? Maybe all three.

For instance, the other day I wanted to make a smoothie. But our immersion blender was in the back of the top shelf of the cabinet, just out of reach. Usually, I just ask my husband or my children (who can climb up onto the counter) to get something I need. But I was alone, and after a few failed attempts to reach with my good arm, I was about to give up on the smoothie idea. Then I spotted the container of cooking utensils on the counter. I picked out a big cooking spoon, reached up, and gently dragged the immersion blender right up the the edge of the shelf. From there, I could grab it. When the kids got home, we shared a blueberry smoothie.

I was pleased that I figured out how to get what I needed. But later, I thought: wow, it took me more than four years (and a cooking spoon) to solve this problem.

Saturday, June 14, 2014


I know that some people who have aphasia find singing very helpful. For me, singing is more frustrating than speaking, especially now.

For instance, the other day I tried to sing the chorus of Yankee Doodle. This is what came out of my mouth:

Yankee doodle wake it up,
Yankee doodle dandy
Mind ta ta ta ta ta ta
And let the girl be handy.

Just so you know, I sang this song before the stroke with my kids, and I have sung it approximately 63 times since the stroke. I have looked at the printed lyrics several times since the stroke. But each time I sing it, different words come out. (Here are the real words.) It's not a big deal except in church, where I worry about my mouth saying surprising things in a hymn.

I have some guesses about why singing is harder than speaking for me. I still have mild aphasia, but I think the motor control issues I have--such as apraxia and dysarthria--come to the forefront when I sing. Sometimes if I slow the tempo down--way down--and have the lyrics front of me, I can get through it without making hash out of the words.

But sometimes I think this what is really going on: I have gremlins in my mouth. Often, they're sleeping. But they like music, and when I start to sing, the gremlins wake up and dance in my mouth.


Monday, June 9, 2014

Just Like It Sounds

I have been driving into Boston once a week and volunteering at the rehab hospital. When I'm done for the day, I have to stop in the lobby and tell the guard my name so that he can validate my parking ticket.

"Carpenter. Just like it sounds," I tell him.

He starts to the write down the name. "C-A-R--?" he says, with a question mark in his voice. He assumes I will rattle off the rest of the the letters in my last name.

I hesitate. "T," I say, "I mean, "P--" My mouth gropes for the next letters. I want to say "T," but I have a feeling that I'm mixing up letters and sounds. After what seems like a long time, I tell the guard,

"I can't say it. I have aphasia," I say.

He looks a little bit embarrassed that he had asked me. "Don't worry,"  he says, "that's good enough," and stamps my ticket.

I can easily write down my name on paper. And if I had an unusual name, I would probably tried harder to work on spelling out loud. But stroke survivors have to chose their battles, or at least, prioritize. So I read aloud to my daughter; I work on my walking; I usually make dinner--these things (and many others) are really important to me. But for now, being able to spell "carpenter" out loud is still way down the list.


Wednesday, May 28, 2014

Upstairs, Downstairs

When I climb the stairs after my daughter's bedtime, it takes me back to my own childhood.  I remember falling asleep to the sounds of  the rest of the family going about their business.

My father was (and still is) a fairly quick walker. But when he climbed the stairs, his steps sounded ponderous. Between the landing and the upstairs hallway, he often punctuated his steps with a long burp (sorry, Dad).

I could recognize my mother by her sprightly, rhythmic steps. Sometimes she also whistled softly (as she still does) with her classically trained warble.

I'm sure my daughter recognizes the sound of me going up the stairs. I don't lean on the railing the way I used to, but I still need it. My gait is uneven, and there's nothing remotely sprightly about it.

There have been times when I thought that full recovery was right around the corner. Now I realize there's a very good chance that when my daughter is a teenager, I will still need the railing.

I have many identities: mother, music-lover, aspiring writer, wife, daughter. Am I ready to tack on this one: disabled mother?

Saturday, April 12, 2014

Goodbye To Our Helper

We said goodbye to our last babysitter/housekeeper/all-around-helper. We have had many helpers since the stroke, but she has stayed the longest. She knows the good things about our family, and the not-so-good.

She has come most weeks for two-and-a-half years to help with a dizzying list of tasks: walking the kids home across a snowy park; doing the grocery shopping; taking the kids to swimming lessons; preparing snacks for two cranky kids; hugging me when I was crying; doing the laundry; supervising playdates; driving me to appointments; making dinners; watering the plants; taking the kids to museums; washing my daughter's hair; reading aloud to my kids; bringing packages to the post office; putting my daughter to bed; saying "no" to the pleas for more cookies, etc.

We will miss her a lot. My daughter is especially sad: they have a special bond. But I'm getting better, and the kids are growing up.

Thank you so much, Linda.

Monday, February 17, 2014

My Ataxia

There's a stunning lack of data about recovery for someone who's in my situation--healthy (pre-stroke); in their forties; and more than a year out from the stroke.  Often I just make up my own theories about the process of recovery.

For instance, I have ataxia (Amy's blog talks about cerebellar ataxia, but from what I understand, my stroke didn't touch my cerebellum). My physiatrist has noted my ataxia seems more noticeable now than a few years ago, but we haven't talked about why that might happen.

This is my theory about it: the ataxia is a good sign of pushing to the limits of my range of movement. Very slowly, I'm gaining more range of movement. But each millimeter (or so) of increased range takes a huge amount of effort and exercise. It takes a while for my muscles and joints get used to the new way of moving. The ataxia gets better with exercise--until I gain a tiny bit more of range of movement, and the cycle will start again.

That's my theory.

I made a video to show how tiny changes of position can set off my ataxia. The video is probably confusing, because I blabber on about "good" and "bad" positions. When I say a position is "bad," I mean that I'm compensating a lot for weak muscles (even though most viewers can't see much a difference); a "good" position challenges my stability--leading to more strength in the long run. I think.