Thursday, April 23, 2020

Haircuts and Dental Cleanings: Now and Then

After a more than a month of lock-down, my hair is a mess, and also I'm worried about how I'll get my regular dental cleaning. About a decade ago, I had the same concerns, albeit for different reasons.

Back then, half of my head had been shaved for emergency brain surgery. After several weeks at the rehab hospital, a few people gently teased me about my punk hairdo: bristly crew-cut on the left, and straggly and overgrown on the right. So my sister Cindy arranged for her sweet and talented hairdresser, Brian, to come to Spaulding to neaten up the outside of my head.

I was pleased by the result. Since Cindy was obviously capable of making amazing things happen, I wondered out loud--probably in one or two short and broken sentences--if she could also maybe arrange for my dentist, Dr. Torelli, to come and clean my teeth. In my hospital bed.

Cindy looked at me with a slightly sad smile, and said something like: no, Sweetie, that’s not going to happen.

The stroke had robbed me of many things--such as movement and fluent language--but my ability to reason, in general, seemed to be intact. But I saw by Cindy’s reaction that I asked for something inappropriate, or at least, unrealistic. I was mortified. But why wouldn’t the wonderful Dr. Torelli make a house-call, so to speak, for a dental cleaning at Spaulding, I wondered?

That evening, after Cindy left, I sat in my hospital bed and pondered the situation. I had been a loyal and grateful patient of Dr. Torelli for decades; I was pretty sure that he would care about the state of my teeth.

Suddenly, an image appeared in my mind. I saw an image of Dr. Torelli’s office, with all of the specialized dental equipment: a chair with adjustable height, angle, and light; the electrical cords connecting the sprayer and drill; the small sink with a push-button tap. Then I saw a laughable image of movers installing a dental chair in my room at Spaulding.

Aha, I thought: it must be the special chair! I have to be in a special dental chair to have my teeth cleaned.

A healthy human brain is amazing, but a damaged brain can be capable of surprising things. The fact that I had been hoping to have a dental cleaning in my hospital bed tells me that my logic must have been impaired. But in the end, some of my brain connections were working just well enough to take me to the right conclusion: haircuts and dental cleanings are very different. A dental cleaning out of a normal setting is a lot harder to arrange than a haircut.

After I had returned home from Spaulding and I was more mobile, I had a cleaning and check-up with Dr. Torelli--at his office, in the usual chair. No cavities.

Monday, March 30, 2020

Ten Years Later: I'm OK. I Hope You Are, Too.

Note: I wrote most of this update a few weeks ago, before the Coronavirus had reached most of the US.

Last month was the tenth anniversary of my stroke. Many people have asked me two questions, either in person or online: Are you OK? Why aren’t you writing these days?

The answer to the first question is: yes, I’m generally OK. I’m still fairly disabled in many (and sometimes weird) ways. But I’ve had great improvements in two areas: my language, and my stamina.

For instance, I rarely need help with telephone conversations or emails now. I admit there was one time recently when I had an issue with my prescription coverage, and after several fruitless conversations and emails with my insurance and doctors, my husband stepped in. He has a Ph.D., and a lot of patience. But I usually manage my own communications, as long as I have enough time and I'm not too sleep-deprived.

And although my stamina varies greatly from day to day, here are some of the things I did on a regular basis this fall: driving into (and parking in) Boston to attend a three-hour class; riding on my recumbent trike for more than 30 minutes on the bike path; and shopping at Wegman’s after a harrowing drive through rush-hour to drop off my daughter at her climbing gym.

As to why I haven't been writing much: I could tell you that I'm too busy with the house, or the kids, or volunteering, or therapies--which is all true. But the main reason is that I think my story is less compelling at this point, both for readers and for me. This is a good thing. My story at first--mother of two young children who suddenly loses the ability to read to her children, to hug them, or generally interact with people normally--was terrible, weird, and poignant. It was great material for writing. And I was desperate to convey my altered reality.

My current story is less dramatic these days: I'm a somewhat disabled mother of two healthy teens, who (with her husband) tries to keep the household from descending into work-a-day chaos. But now that I'm well into middle age, more and more of my friends and connections are dealing with their own physical limitations and deep challenges.

Closing Note: I was pondering the conclusion of this post, and what to write about next, when the pandemic starting taking off. Like most Americans--and most of the world--I'm having a hard time focusing on anything other than the current crisis. My family is healthy, so far. I'm wishing health and safety to all my readers. Wash your hands.

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?