Twelve Days of Recovery

HMMM … Everybody now, SING!

In three years post-stroke,
I've acquired for recovery:
24 balls for gripping,
18 shower strips non-slipping,
14 finger flexors,
10 toe relaxers,
7 braces a-bracing,
6 shoes no lacing,
5 p i l l  b o x  s o r t e r s . . . 
4 grab bars,
3 cooking aids,
2 walking canes,
And balance games to play with Wii!

And like the "Twelve Days of Christmas" song, the list could go on and on . . . just look at all this stuff!

"Exercise? I thought you said 'ACCESSORIZE!' "

I hate clutter. I hate being reminded of stroke everywhere I look around my house; so as soon as I think I've outgrown some piece of equipment, I put it aside for storage or throw it away.

MISTAKE. As I've progressed from one stage to the next, I've discovered how some of my old "excessories" could have been re-purposed for exercises at a higher skill level. I keep sending my poor husband into the loft to look in the "therapy bag" for some old brace it turns out I threw away months ago. 

And that's just the truth of my life: Stroke is always in season.

Get a Grip

One thing that continues to blow my mind is how the stroke affected every part of my left-hand side — my toes, my intestines, my ear canal, even my eyeball.

My left eyeball now gets irritated easily. When I first tried to soothe it with eye drops, the drop plopped in one side of my eye and rolled out the other. I had no blink reflex because I couldn't feel the drop hitting my eye. It kept happening, so I started calling my Visine, "Eye Drop Outs." I had to learn to blink right away to "catch" the drop in my eye. Once I could feel dampness on my lids, I knew the drop had reached its target.

I remembered this lesson during my first efforts to pick up exercise balls with my fingers. The balls kept popping out of my hand. I was applying more pressure than necessary because I couldn't feel the ball against my fingertips. I had to learn to moderate my grip pressure.

I was explaining this to a friend who suffers from neuropathy. She said, "I know exactly what you mean! I was trying to pick up a bobby pin and I couldn't do it, because I couldn't feel it!" 

Wow. That was awesome not only to have my realization affirmed — that a sense of touch is important to grip — but to be reminded that if this stroke hadn't gotten me, some other thing probably would have. There is just a whole smorgasbord of difficulties out there to suffer from.

Over time, as I've practiced moving the exercise balls, I've begun to feel them. I had the clear sensation last week of the rough texture of the balls brushing my fingertips as I released them.

Next post: a formula for reawakening nerves.

In 'N' Out

Sometimes I notice that I hold my breath when I'm doing something challenging. Pre-stroke I caught myself holding my breath whenever I changed lanes on the freeway. Post-stroke I notice it most often while doing hand exercises.

My occupational therapist used to command me to "BREATHE!"

My retort: "I can pick up this ball or I can breathe, but you can't have both!"

I wasn't the only rehab patient with this problem. I heard other therapists bark the same instruction at other straining patients. 

Here's my new tactic: When I become aware that I haven't exhaled, I stop whatever I'm struggling to do and take a few purposeful breaths. Then I make another attempt while focusing on my breathing. Whenever I do this, I notice my coordination and execution improve. I have become convinced that my recovery will coincide with my ability to breathe easily through my motions. Like golf or yoga, the perfect swing or the perfect pose feels effortless.

Jack Kornfield tells a story about a meditation student who complains to his teacher that focusing on his breath during meditation is boring. The teacher grabs the student by the neck and plunges his head under water. When the teacher finally releases the struggling student, he says: "Do you think your breath is boring now?"

Mouthing Off

In the beginning I did mouth exercises to counter a drooping smile and slurred speech. Lying in my hospital bed that first week, I practiced my pucker with enthusiastic sucking noises. I filled my cheeks with air and pressed it out in tiny farting bursts. I pursed my lips "Oooohhhh" and stretched my lips "Eeeeeeee." I once practiced this last exercise with such vigor, a nurse checked to see if I was okay.

In rehab my speech therapist fed me crackers to see if I was "pocketing" food between my cheek and gums. I chewed the crackers and opened my mouth for inspection.

"Good," she said holding out another Saltine. "One more time."

"Bwwaack," I said. "Marcelle want a cracker."

I minimized chewing on my left side because my weakened tongue lacked the agility to scoop food out of the corners of my mouth. When chewing I often bit the inside of my lips and cheeks. I haven’t done that in awhile, I think. Then I bite my cheek again.

Swallowing poses hazards. The muscles on the left side of my neck are weak and sometimes food sticks in my throat. I never eat without a glass of water at hand.

Also food doesn't taste as good. For a long time I thought this might be my imagination, but last week the nerves along the left side of my tongue began to reawaken with an electric jolt. Then I realized that half my taste buds have been disconnected from my brain – so no wonder I'm not getting full flavor.

On the upside food doesn't taste as bad either. Guess that's why a few nights ago I was able to eat beets.

Top 10 Benefits

This list balances the bad (see Top 10 Challenges) with the good. These are the Top 10 Benefits of My Disability:

10. No one expects me to help clear dishes at dinner parties.

9. I'm given the most comfortable chair in the room.

8. Any time I'm not in gym shorts and a tank top, I can claim to be "dressed up."

7. I have a legitimate reason to get regular manicures and pedicures.

6. I take a nap whenever I want to. (Oh wait, I used to do that anyway.)

5. I cut to the front of long theater bathroom lines and go into the handicap stall.

4. When the cashier at the market asks if I'd like help out with my groceries, I say "yes," and then I don't have to take my own cart back.

3. People hold elevators for me.

2. I have lots of stuff to write about.

1. HANDICAP PARKING SPACES!

That's all from me this year. Thanks for reading and happy holidays!

Top 10 Challenges

Time for those year-end Top 10 lists!
This is the Top 10 Challenges for the One-Handed.

This list could have been a Top 100. I've confined it to things I do on a regular basis. If something obvious isn't here, it's probably because I avoid it — i.e. zippers and buttons.

10. Getting the last bite of food onto a fork.

9. Taking a greeting card out of an envelope.

8. Putting a greeting card into an envelope.

7. Signing a credit card receipt – a short one that curls.

6. Opening that waxy plastic bag inside a cereal box.

5. Preparing a toilet seat cover.

4. Texting while driving*

3. Donning shoes while my dog confuses them for chew toys.

2. Removing fingernail polish.

1. Pinching one nostril closed while snorting allergy medication from a long-nozzle, pump-action bottle.

*Calm down – I’m kidding.

Black Crayons and Perfection

I continue to fret about how the stroke affects my nieces' and nephew's perception of me. Above is a page from one niece's kindergarten journal after Thanksgiving last year. The two of us stand in my backyard. There's the hot tub, the patio table and…

"Abigail, what's that?”

"A trash can."

I'm more recognizable: There's my cane, my glasses, and a pizza on my head. (Oh, sorry – that's a hat.) What puzzles me most is why I'm dressed for a funeral. Really? Of all the crayons she reached for black? I look like an old lady with both feet in the grave.

I suppose I should focus on the fact that of everything my niece did during that four-day weekend, she chose to document the afternoon spent at my house.

My favorite memory of that afternoon is of Abigail and me walking up the drive. I felt a strange sensation in my stroke-numbed palm, looked down and saw her little hand in mine. She had slid it easily between my clawed fingers. I was amazed. She hadn't given it a thought – as if I was completely normal.

Which makes me think: Perhaps my concern about the children's perception is more a problem of how I see myself.

As if to underline that idea, here's the card Abigail made for me at Thanksgiving this year:

I'm trying not to let it go to my head.

From the Mouths of Babes

Before I had one, I couldn't have explained stroke. I would have described a couple of symptoms – slurred speech, impaired arm function. I would've said "It's sort of like a heart attack." I didn't understand it was brain damage. I didn't understand the possible long-term effects. I've since talked with an adult friend whose concept was just as fuzzy.

It might be that we were never interested enough to pay attention to the definition, or that we were confused by the statistics we heard lumping heart attack and stroke together as leading causes of death. Or it might be simply that it's complicated.

My sister recalls her attempt to explain stroke to her seven- and eight-year-old daughters: "I told them 'Auntie had a stroke' and explained what that was. They listened and nodded and then a minute went by and they said, 'Wait, what's a stroke again?' "

Earlier this week I was picking up my brother's son from preschool when a little girl rode alongside me on her tricycle and asked, "How did you hurt yourself?" I struggled for words. How do you explain stroke to a four-year-old?

My brother's six-year-old daughter – by my side and never wordless – came to my rescue. "She had a stroke," my niece said brightly. "That means your blood stops moving and your brain gets all kooky and your arm stops working and your leg stops working and – it's really bad."

Only a child could give a description so dire and make me laugh.

Now I Lay Me Down To Sleep

When my husband and I were dating, he took me on a hike. After a couple hours of climbing, I needed a nap. I stepped off the dirt trail onto the rocky slope and lay down. I slept for an hour, amusing passing hikers and giving my husband a foretaste of our traveling life together. I have missed great swathes of Africa and Asia curled in the womb of the passenger seat while my husband serves as both driver and navigator.

Like everything else, the stroke has changed my ability to snooze easily. I put on the foot brace, the arm brace, and position the pillows just so – then get an itch under my left shoulder blade. Or I struggle to pull the covers over my icy left side and, in the process, break a sweat that requires everything to be thrown off again.

Thankfully, I am now able to sleep on my sides for brief periods. But this requires rearranging everything, so rolling over is a major commitment. And getting up in the night? To ambulate, the boot has to come off. Sometimes those devious Velcro straps conspire to stick to each other while I'm in the bathroom so that I have to pry them apart one-handed in the dark when I get back.

I spend plenty of time lying awake, my husband snoring happily beside me. My solution: audio books on iPod. Now if only I can figure out how to stop the earphones tangling.

Battling the Dragon

I am learning to adapt my writing process from typing to dictating through Dragon Naturally Speaking software. Dragon is very helpful but ...

I say "My sister mothered me," and it types "My sister bothered me." I say "enunciation" and it types "NCAA sin." I say "air kisses with super loud" and it types "Eric kisses with sick birds allowed."

I am not make you dish it out. Correction: I’m not making this shit up.

I check the settings on my microphone and wonder if people are lying to me when they say my NCAA sin sounds normal again.

I found the mistakes so distracting at first, I had to go back and correct them right away. But then I lost my flow. So I tried writing with my eyes closed. By the time I opened them again, I had no way of reconstructing what I'd said.

Eyes open, I have learned not to swear out loud at these errors. Or I get something that looks like this: Eric kisses with sick birds allowed God dammit!

I have learned to pause and turn off the microphone before responding to my husband’s knock on my office door, or I get bizarre renditions of one-sided conversations.

The soft hiss of my breathing against the microphone often appears as "him him him him … ."

I have learned to speak punctuation and capital letters as a natural part of my dictation: open quote I close quote often becomes open quote cap A close quote period. Translation: "I" often becomes "A".

Forget playing the PNO, forget breeding my niece’s hair! A just want to type!

Stop It – You're Killing Me

My first roommate in rehab had broken her hip while sneaking out of her daughter's house for a cigarette. One morning over breakfast, she gave voice to my sentiments in her
tobacco-roughened Alabama accent: "I hate this place.
Get me out of here. I can't stand it another day."

I lost it: I laughed, I howled – I went into a complete hysterical fit. Sensing that Helen was not amused, I tried to stifle my giggles and focus on my flat-as-roadkill sausage. But bursts of laughter continued to erupt out of me for several more minutes.

I remembered something I'd read in the thick stroke notebook I'd been given on my arrival in rehab. An effect of stroke can include "emotional lability – uncontrollable laughing or crying for no apparent reason."

The next time I saw my husband, I asked him, "Am I behaving inappropriately? I mean, any more than usual?"

"Like when we were having lunch with your mom and you laughed so hard you snorted milk out your nose?"

"Okay, the milk bit," I conceded. "But the situation was pretty funny – you've got to admit."

(I’d relay the story here, so you could see my point, but it's really one of those things where you had to be there.)

"It wasn't that funny," my husband said.

Okay – maybe you had to have a stroke and be there.