Recovery Beyond Two Years

I am five years post-stroke. Two-and-a-half years ago I started working with a new therapist. I hinted about the work we’re doing in Rehab From Rehab, but I’ve avoided specifics for two reasons:

1. I could not imagine how to write about his techniques.

2. I didn’t want to report on techniques that did not deliver results.

I’m heartened to state now that I have improved and there is good reason to believe I will continue to improve. How much? Will I ever be able to use my hand? No one knows.

I have recently been in touch with a stroke survivor and new reader to my blog who seemed to want assurance that a second round of Botox injections on a spastic forearm would yield a worthwhile result. While I wrote back with encouraging details of my Botox experience, I think my most important point was this: I would have lost heart and gone insane years ago if I’d been focusing on the result.

The information we stroke survivors want to hear is that we’re going to get better and how long it’s going to take. The past few years have taught me to shift my attention to the process and to focus on enjoying my life today.

I understand that it can be demoralizing to invest the time, money, and emotional energy in therapy when there is no immediate evidence of a result. In Stolen Identity, I wrote about the types of motivation that keep us going in an exercise regimen – the most helpful being the “identity motivator.”

Yes, I’ve continued therapy past the two-year mark and it has yielded incremental results. But I’m going to keep doing therapy because I’ve made the decision that’s who I am.

Next post: About my new therapist

Negative Space

Graphic design uses a concept called "negative space." It's the empty space around whatever it is you want your audience to look at. Negative space helps define the subject. Properly used it's as important as what is there.

If the subject is "my life," then the stroke helped bring it into focus. What's important? As I regain energy, how do I want to use it?

Two years before the stroke, I left an all-consuming career to pursue a lifelong dream to write. I did write…some…but in the heady rush of freedom, I also let my life become busy with non-writing. I cleaned my house and tended my garden as if Sunset magazine would be doing a photo shoot. I tutored out of a compulsive need to contribute financially. I devoted myself to becoming the Best Auntie in the World.

Since the stroke I don't clean. I don't garden. I don't see my nieces and nephews as often. The stroke created negative space. In the quiet parcels of time between therapy and the few household chores I manage, I find myself drawn to my desk. It's relatively comfortable to sit here gazing at the computer. But there is only so much on-line Scrabble I can play and then I yearn for something more. I start to write.

The stroke is helping me to become "the me" I always wanted to be. As if by design.

When in Rome

Physical therapists in rehab made predictions I would be "walking" within six months. I took that to mean "normally." But at 21 months I still limp and tire easily. I've started walking regularly around the block to improve my form and stamina. This half-mile took 38 minutes my first attempt and I had to lie down for 40 afterward.

My husband and I share a passion for world travel. More than any other recovery goal, I want to walk with my husband when we're on our adventures. Together we have trailed rhinos through the African bush and explored the ruins of Cambodia's Angkor Wat. We have braved the crowded streets of Old Delhi during Ramadan and hefted packs along muddy trails in a Peruvian rain forest.

I try not to think about whether I'll be able to carry weight over rough terrain again. My husband says my condition won't stop us from doing what we want. "We may have to do it differently than before," he says. "We may have to hire Sherpas."

I'm trying to focus on a more achievable goal. I remember a glorious day we had wandering Rome, encountering ruins so common they weren't even marked on the map. We probably walked 10 miles that day. I'd like to be able to walk like that again – with my eyes taking in the world around me rather than focusing on my feet. Three miles … just three miles like that.

I've cut my time around the block to 26 minutes and I don't have to lie down afterward. Both my pace and rate of improvement are agonizingly slow. But Rome wasn't built in a day … probably not even in 21 months.

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.

Grandma Goes Golfing

Soon after the stroke, my toddler nephew started calling me “Grandma.”

Because I was using a cane? Because I wasn't spending quality time with him?

Whatever the reason, it bothered me.

"Nate, I'm not Grandma. Who am I?"

"I don't know."

Something had to be done. He needed to be reminded that I am fun – a contender for "Best Auntie in the World." Weren't we the weekend before the stroke hurtling down a snow-covered mountain together on an inner tube? Was all the bonding we had done pre-stroke for naught? Unacceptable.

I racked my brains: Where could we go for a play date that would be manageable, fun and safe?

I decided on a nearby miniature golf course with a low-traffic parking lot. When we arrived, I left my cane in the car and took Nate's hand.

"Grandma, you're walking really good."

"Nate, I'm not Grandma. I'm Auntie. I know I seem old to you, but I'm not that old, I'm just sick. I'm Auntie."

We had a great time on the course and I even managed to work in a little hand therapy – gripping the club in my left hand and using my right to lower the club head to the tee. I actually made some good putts and sunk a few. I probably would have made more but Nate kept "helping" by picking up my ball and dropping it in the hole.

We had a heckuva time buckling him back into his car seat – but working together we succeeded and returned home in one piece.

The following week when I saw my nephew he shouted, "Hello, Auntie Celle!"

Yes! Whole in one.

Out of my Closet

I used to joke that when I retired I was going to wear nothing but flat shoes and expandable waistbands. But when I quit working, I still liked the way I looked in high-heeled shoes. And elastic waistbands feel so frumpy.

But the stroke has given rise to this once comic version of myself. Waistbands with buttons and zippers are just too fiddly. And my week ankle requires the stability of a flat, solid shoe. The stroke has speeded me toward that moment in all our lives when we realize we are no longer attractive in that particular way that might cause someone to take notice of us across a room.

I can see the upside to facing this moment a little early in life. There is no danger that I will become "mutton dressed as lamb." But more than that, there is the relief of stopping the pretense … of easing the unreasonable demands I made on my body: "Well, if I hold my belly in, these don't look so bad." Or, “I can wear these shoes if I don't have to walk too far."

Recently a friend helped me clean out my closet. Goodbye high-heeled shoes and strapless sandals! Goodbye 501 jeans with the button-up fly and the unforgiving waistband! From now on style will be sacrificed to convenience and comfort. Who knows what I might do with the space in my brain that I free from focusing on my own reflection?

Vulnerable

Even as a woman, and a small one at that, I never felt defenseless. I felt (rightly or wrongly) that I had enough strength, lung and brain power to get myself out of risky situations.

That guy who reached for me on a dark street in Copenhagen? An elbow to the face without even breaking my stride. That guy who snatched my friend's bike one night on the USC campus? I gave chase and bellowed so loudly that half a dorm was after him in no time.

I have the kind of mind that prepares escape plans. As a kid I used to lie in bed and imagine what I'd do if a murderer came in my window. As an adult: What if a snatcher grabbed my purse? Or something happened to one of my nieces while I supervised them in the park? Or my nephew was floating face down in the pool? I always felt confident that I could handle these situations.

Now I am keenly aware of my vulnerability. I can't run. I can't swim. I can't carry a child. All I can do is yell (and if the bad guy holds still maybe bash him with my cane). I sometimes have the foolish delusion that because of my disability I am off-limits. But I know at this point the only real strategy I have is to count on the goodness of other people – not to threaten me in the first place, and to step in and help me if I need it.

Stolen Identity

Years ago when I worked as editor of a fitness magazine, I published an article about staying motivated on an exercise routine. It delineated the types of motivation:

Negative Consequence Motivators: If I don't exercise I'll get fat, my husband will leave me, I’ll die of a heart attack, etc.

Positive Consequence Motivators: If I exercise I'll feel better, I can buy myself new clothes, etc.

Identity motivators: I exercise because that's part of who I am.

They can all work. But the most effective is the last one because, psychologically, it's hard to give up a piece of our identity.

Coming to terms with changes in my identity as a result of the stroke has been the most challenging part of my recovery so far. After I began to realize the impact of my physical limitations, I cried a lot. I thought I was depressed, but a psychotherapist told me I was grieving. I grieved the auntie who got down on the floor and played with the kids. I grieved the domestic superwoman who took care of house, husband and garden. I grieved the yoga student with an almost-perfect triangle pose.

Now, stroke survivor is part of my story. I'm looking forward to a time when it is no longer my headline … when I can look back at the experience and see how it led me someplace amazing I wouldn't otherwise have gone. And then I can say, "No, I wouldn’t give up this piece of who I am."

Painful Beauty

My brother's daughter has gorgeous hair – long, thick, silky honey. The weekend before my stroke, I French-braided a headband across the top of her head. She was only four, but she sat still with her head tilted sideways while I worked. At one point, she said, "Ow! Auntie, that hurts!"

"Beauty is pain," I told her.

My sister-in-law doesn't French braid. Shortly after I got out of the hospital, I bought her a "how-to braid" book. I studied it twice before wrapping it. The French Rope Braid was so intriguing, I found myself thinking about it during nights when I'd awake uncomfortable and unable to sleep. I would imagine rope-braiding my niece's hair – my nimble fingers sectioning and coiling the golden strands.

I have come to accept that braiding is another skill I won't relearn. The conditions that allowed me to develop it in the first place – two years on the cheerleading squad and my own long hair – are gone. I have stopped thinking during sleepless nights about braiding and turned my thoughts in other directions. But I still get a bittersweet pang of wistfulness when I look at my beautiful niece and run my hand over her glorious hair.

Abigail, 3-27-10
(Hair by Auntie Marcelle)

Ragtime

There was a piano at a party I attended recently. I asked my hostess if she played. "No, but I always wanted to play ragtime," she said. Pre-stroke, I would have sat down right then and pounded out the "Maple Leaf Rag."

The "Maple Leaf Rag" by Scott Joplin was my signature piece. I've been playing it for 30 years. It includes a hand-over-hand run all the way up the keyboard. In my talent show version, my hands kept running until I fell off the piano bench. A comedy routine – my dad's idea.

I didn't even need a piano to play the "Rag." I'd tap it out on my thigh during dull classes or meetings. In the hospital post-stroke, I reviewed the fingering in my mind. The brain doesn't know the difference between imagining and doing, and I hoped that this mental exercise would spur my fingers toward movement.

I have been told that any skill I want to recover will require hours of practice and repetition. I will not take the time to learn to play the piano again. It's a loss, but not a devastating one. I was neither a gifted musician nor an avid one. In fact, I can't remember the last time I played. What I do remember is during my dad's last visit before my stroke, he said, "How about a little Scott Joplin?

And I said, "Not now."

Click here to listen to "Maple Leaf Rag."

Qwerty Envy

On my first day of occupational therapy, I was asked to state a goal. My answer: To type.

I can't expect that I'll ever type as well as I used to. At university, I acquired speed and accuracy by entering classified ads on deadline for the school paper. Over the years, I became so fast that co-workers would comment. One asked, "Are you doing that for real? Or are you typing gibberish to make us think you're working?"

Typing was an integral part of my writing process. The words flowed out of my head and through my fingertips. When I stopped being able to type, I stopped being able to write. Several people recommended Dragon Naturally Speaking dictation software. Learning to adapt my writing process to this tool is one of the main reasons I started the blog.

My goal to type is an ambitious one. To reach it will take lots of patience and practice. I might as well start now.

The quick brown fox jumped over the lazy dogs.

(Typed with two hands – my right guiding all fingers on the left except the middle one, which can punch a key all on its own. 7 WPM, Errors: 0)