Making Memories

March 2010: six days before my stroke

It has been a long time since I have grieved over my physical limitations. But this Thanksgiving my brother's family escaped to our shared condo in Mammoth. As I think of them there, I cannot help but remember the time we shared together just days before my stroke.

We had gone to Mammoth to enjoy the snow with my young niece and nephew. We are from Los Angeles so snow is miraculous, magical! I was as excited as the kids. They were finally big enough for inner tubing!

The kids eyed the tubing hill with uncertainty as we buckled their helmets under their chins. We had signed the liability waivers and were persuading my nephew to try it “just once.” We doubled up one kid with an adult and we flew down that mountain!

"Again!" they screamed as soon as we skidded to a stop.

We headed for the towline that hauls riders up the hill. I rode with my niece: me on my back in the tube, her small body warming my belly, our faces turned to the sky and the snow-laden trees. I recall the swish of our tube over snow, intimate whispers between us. What did we talk about on that gentle ride up the mountain?

These are the moments I miss.

More than two years have passed and the children are big enough now to ride their own tubes. I cannot ride at all. I suppose my experience is no different than the parent who loses the child through its growing independence. I just wanted more time.

This Thanksgiving I remind myself to be grateful for the time I had, and the time I still have to make new memories.

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.

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)

Lighting the Darkness

My dearest friend from grade school made the effort to visit soon after my stroke. Living far apart, we don't often see each other. She brought her six-year-old son with her.

"Zachary," I told him, "Your mommy and I were your age when we became friends."

This did not interest him. Nor did our conversation, which we gorged on, sitting before the fireplace in my backyard. Taking pity at last on the bored child, I told my friend where to find leftover sparklers from the Fourth of July.

The two of them danced, sparklers crackling, my friend’s graceful arms waving overhead, her son spinning like a dervish. I began to weep. My friend took me in her arms and held me.

When Zachary's sparkler burned out, he came for another one.

"Why are you crying, Marcie?"

Because I can't dance anymore. Because this is my life now.

"Because you and your mommy's dancing is so beautiful." And that was true, too.

"Thank you," he said. And his mom lit more sparklers and they danced some more, throwing pieces of light into the darkness.

If I had been well, I would have been dancing with them, and I wouldn't have this memory that moves me more than dancing ever did.