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.

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.

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.

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.

Singing

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.

#AphasiaAwarenessMonth

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.

#AphasiaAwarenessMonth

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?

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.

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.

Four Years Ago

The last time the Winter Olympics happened, I watched them from my bed at Spaulding Rehab.

Someone from my family would come almost every evening--usually mother. She would help me eat, and keep me company. When it was time to watch the Olympics, she would turn on the TV and put it on the right channel. Changing the channel was still mystifying for me.

It's Greek to Me

My aphasia is mild now. I can have a conversation. I can write short emails without too much trouble. And of course, I can write a blog.

But the aphasia is still there. Even the people I'm closest to sometimes don't realize that I'm struggling in certain ways.

For instance, I still have some auditory processing problems, especially with numbers. Last April, my mother and I were watching the Boston Marathon on TV (this was before the bombs went off, when finishing times still mattered). We were enjoying hearing about Joan Benoit Samuelson, a fellow New Englander who had won 30 years ago. In the commercial break, my mother and I had a conversation that went something like this:

Mom: Wow, 2:ΣΨ:ΠΏ. They had said that she wanted to finish the marathon in under 2:ΣΔ:ΓΦ.

Me (looking blankly at my mom): uhhh…

My mom probably decided that I couldn't hear her.

Mom (in a louder voice): I said, she wanted to  finish the marathon in under 2:ΣΔ:ΓΦ, and Benoit’s time was 2:ΣΨ:ΠΏ.

Me (still looking confused): uhhh...

Mom(in a loud voice, again): it was two minutes under the other time.

Me (in a loud and agitated voice): Mom, don't you know that I can’t understand numbers?

It was my mother’s turn to look blank. We had a short conversation about how my brain can't handle numbers in certain situations, and then we went back to watching TV.

Sometimes I think that recovering from a brain injury is like peeling an onion: there's always another layer to peel. Each layer gets thinner and harder to see, but I know it's there.

(Fortunately, I can usually understand written numbers. Samuelson's time was 2:50:37, better than her goal of under 2:52:43. Go Joan!)

My Cane

Around of the end of last summer, I started walking around my neighborhood without a cane. It was a little scary at first, but I'm happy that I've made the leap (so to speak). I'm putting more weight on my affected side, and in general I feel stronger.

But I still do use my cane, especially in bad weather. I also use it, for instance, when I go to a store; or to a meeting; or any time I might encounter a crowd--especially a crowd of children. When I have my cane, people give me more room to pass. They hold doors. Parents ask their children to step aside. When I can't spit out the words at a normal pace, people (usually) give me more time to speak if they see the cane.

Sometimes I think I should ditch the cane, but I wish there were some other way to signal that I might need extra space or time. I guess I could hang a sign around my neck, that says: "Warning: Brain-Injured Person," but the cane does seem more elegant.

I have many canes, but this is my favorite

Piano Therapy

Since the spring, I’ve tried to practice piano regularly. It doesn’t sound much like music yet, but I have progressed a lot since the early days of my recovery. I work on scales, basic exercises, and pieces I learned when I was in third or fourth grade.

Sometimes I do have a good cry at the keyboard. I miss making real music. But I do think that trying play the piano has helped me a lot, in unexpected ways.

When I practice, often I don’t focus directly on finger dexterity, because it’s too frustrating. I still don’t have much sensation or proprioception in my hand and arm. So I focus on looking symmetrical while playing. I compare the angle of my right wrist to my left wrist, or left chest or the right chest,  or the angle of my forearms.

Then I make tiny adjustments of position or posture, and at some point, I usually get a sudden feeling of awakening in some muscle in my right side. Usually it’s a muscle (or group of muscles) in my trunk: my shoulder, or upper back, or my chest, or my abdominal muscles. It can be a stretching feeling,  or a heavy feeling, or an itchy feeling. But that feeling of my body waking up is addictive. So I try to hold on to that feeling, and make it happen again.

One day a few months ago, I was getting tired after about 15 minutes. I needed a change of pace, so I decided to really  to work on arpeggios for the first time (but with  my left hand--it’s too frustrating to try with my right hand at all). When I (and most people) play arpeggios, I have to lean from end one of the keyboard to the other end, and back again. So I leaned, and voila: I had that wonderful awakening feeling--in my right buttock. Now I think of arpeggios as “butt practice.”

I’m sure I could find a few reasons why regaining sensation in this part of my body is good. But the biggest is very utilitarian: any gain of sensation also helps me regain strength, and any gain of strength helps me to improve my gait. In stroke recovery, everything is connected.

Treat or Trick

On Halloween, I stayed at the house, while my husband went around the neighborhood with my daughter and some of her friends. They were the first trick-or-treaters to arrive at our house, and I could hear their excited chatter as they came up the steps. I was a little bit nervous. I wanted to greet them with the right mix of warmth, surprise, and admiration. I was also nervous about spilling the candy, taking too long to open the door, or tripping on the rug.

The doorbell rang. I opened the door, I mustered my enthusiasm and and said,

"Trick or treat!"

The children looked at me. I looked at the children. After a moment's hesitation, the children dug in to the candy bowl. As the children started to file back down the stairs, my daughter looked at me.

"Mom, you don't have to say 'treat-or-treat,'" she said coldly, without waiting for my response before leaving.

Did she understand that the aphasia that made me say the wrong thing, I wondered? Or is she already feeling that all moms are clueless, anyways?

I closed the door. Under my breath, I said: "Happy Halloween! Happy Halloween! Happy Halloween! Happy Halloween!"

Sports Fan

I've never been into teams sports, to put it mildly. So my husband has been flabbergasted that I watched at least part of each game of the World Series.

I watched partly because it's harder to have fun with my kids since the stroke--I can't ride a bike, or go skating, for instance--so cuddling with my kids in front of the TV suddenly seems like a great option. Also, I keep reading that learning something new is good for your brain, so learning the rules of baseball at the age of 49 must be great for my cognitive skills, right?  (It's also entertaining for my husband, who still can't believe the depths of my ignorance about the national pastime.)

But the biggest reason why I kept watching because I have been mesmerized by the twisting, turning movements of the players, especially the pitchers. The movements were beautiful. These days I get so focused on the mechanics of walking that I sometimes I forget about all the other movements a body can make, even a non-athlete body. Even I used to be able twist my body to vacuum in a corner, or turn suddenly to chase a child, I keep thinking.

I want to work more on my twisting and turning muscles. Inspiration lurks in funny places.

What I've Been Doing Lately

Recently I haven't been posting a lot. Here are some of the things I've been doing, instead of blogging:

making dinner - some grocery shopping - taking my son to piano lessons and nagging him to practice - looking over the kids' homework - driving myself into the city once a week to go to a class for people who have aphasia - driving once a week to the YMCA to work out - shopping for clothes for the kids and myself - organizing four years of photos - walking to school to pick up the kids four days a week - scheduling various medical, dental, and other appointments - trying to play piano for 20 minutes a day - managing social calendars for myself and the kids - writing emails - doing yoga on the living room floor

Compared to most people--especially if they have a job--my life unfolds at a slow pace. But it's a huge jump from my activity level a year ago, and I'm very pleased about that. I do wish, though, that I didn't feel exhausted all the time.

Flashback

Yesterday I was trying to hold my water glass with my affected arm at dinner time.

Maybe it was a slip of concentration. Maybe there was  a bit of water on the outside of the glass, making it slippery. Maybe it just was one of those things that could have happened to anyone.

As my hand was inching up to my mouth, the glass slipped onto the table with a loud bang. There was also the noise of splashing water everywhere--the table, my plate, the floor.

"ARE YOU OK?" asked my husband loudly, with panic in his voice.

"I'm fine," I said, "I'm fine. It just slipped."

My husband has always had a strong startle reflex, but he reacted as if a bomb went off.  He started rushing around--getting a dish cloth, barking orders to the kids, mopping up the spilled water as if his life depended on it. The kids were amused at the commotion.

We didn't talk to the kids about the reasons why their dad reacted so strongly to the glass slipping through my hand. We didn't even talk about it between two of us, this time, because we both knew what he had been thinking: that I was having a seizure, or worse.

My husband has been heroic through these years of the stroke, seizure, and recovery. But like most heroes, he has scars, and heightened reflexes.

How The Brain Works

Our seven-year-old daughter was working on a drawing a few days ago. It was a diagram of the brain:

How The Brain Really Works

She had color-coded each part of the brain in the drawing, and she explained to my husband and me how it all works:

Pink -   Separate World ("Seperate World")-- i.e., imagination. Everyone can have a separate world, she told us. You can decide the color of your separate world. My daughter's world, of course, is pink.

Green - Silly Beans. Everyone is born with 1,000,000 silly beans. After birth, you start losing them. Between the ages of 4 to 7, you have 1,800 (or at least, I think--her calculations were too complicated for me to follow). At this stage of life, my husband has 900; I have only 700 silly beans left.

Lines and Dots  - Files. Most of the space in your brain, she told us, is occupied by files. 

Red -  Blood  ("Blud")

Blue - Thinking. Note the size of the part of the brain that is devoted to thinking.

Lost and Found: Performance Anxiety

I'm still finding parts of myself that went missing after the stroke.

For instance, a few weeks ago, I was watching Nova. Some of the program was about test anxiety, and it showed nervous students taking a test. As I watched the show and tried to put myself into the students' shoes, I realized I could barely remember that feeling of performance anxiety. Before the stroke, any of these situations--taking a test, or speaking in public, or even thinking about some students taking a test on a TV show--would have gotten my heart rate up.

It's not that I don't feel anxiety sometimes now. But more often, it feel like I have a switch with two settings: crushing fear, or a strange calmness. In the few times I have had to speak in front of a group since the stroke, I haven't felt much of performance anxiety.

I'm sure there are many reasons why I feel calmer these days. First of all, a disabling stroke can put things into perspective. Or it might be medications. Or that after failing so many tests of language and physical ability, I'm used to failure now. Or it might be because I started out not being able to recite the alphabet or spell my name, so any achievement can make me feel like a wunderkind. But mostly, it feels like parts of my brain are still not hooked up the way they used to be.

Given how much I have struggled with performance anxiety all my life, you would think that I would be happy to leave behind that part of myself now. But I remember some of my discussions with my former piano teacher. I studied with her for many years before the stroke, and she helped me work through my anxiety a lot. She talked how important it is to be meticulously prepared. But she also talked about how anxiety can make a performance more focused: without some anxiety, a performance can loose its edge.

So I keep thinking: do I want this part of myself back? Do I need to regain that anxiety? Do I have a choice?

June Is National Aphasia Awareness Month

June is National Aphasia Awareness month. 

Here in Massachusetts, there will be the first Aphasia Awareness Day at the State House on Thursday, June 27. If you live in Massachusetts, please join us between 11am and 2pm to raise awareness about this communication disorder. The event will include information about resources for people who are living with aphasia and their families and friends. For more information, see Justice 4 Aphasia. Many thanks to Karen Kelly for making this happen.

This might be obvious, but I'll say it anyways: these kinds of events are important because so many people who have aphasia cannot speak (or write or read) for themselves--and people who can't speak for themselves can't get the services they desperately need.

For people who don't live in Massachusetts or can't join us at the State House, there is a growing number of online resources for people who are affected by aphasia. A good place to start is the National Aphasia Association and its directory of  support groups and centers that offer speech therapy and courses. Also, if you are on Facebook, there are also at least two pages that are great places to connect with other people who have aphasia and their caregivers: Aphasia Recovery Connection and Living Successfully With Aphasia (sorry, I don't know how to link to a Facebook page).