Mother's Little Helper

My mother has been my greatest cheerleader since my stroke, driving me to therapy, holding my hand during Botox injections, and encouraging me when I feel hopeless. Sometimes I feel she’s naively optimistic.

This same “can-do” attitude prompted her at age 71 to embark on writing a non-fiction book about a program she participated in during college. My mother admits that when she volunteered at an alumni meeting to document the program’s history, she had no idea what she was getting into.

She researched for a couple years, produced a 600-page draft, and showed it to fellow alumni who changed some commas. But she needed more help and nobody was better positioned than me – a professional editor – to provide it.

I hesitated: Would editing the book take too much time away from rehab? Could I sit at the computer for long hours given my physical restrictions?

My husband encouraged me to volunteer. As well as “paying back” all the support Mom gave me post-stroke, working on the book would give me something to focus on besides rehab, and would show me whether I had the stamina to pursue my own dream of writing books.

After more than a year of intense editing, the book has been published; program alumni are happy; and Mom and I have bonded at a whole new level. Just as important, I’ve discovered one more thing I’m capable of doing despite my disability. 

Of course, my mother never had any doubts.

Project India: How College Students Won Friends for America, 1952-1969 by Judith Kerr Graven, available through Amazon.com and Barnes & Noble in print and ebook formats.

April Anniversaries

My two-year stroke anniversary was April 3, 2012. The date loomed large because of two comments I heard in early recovery: A relative in healthcare predicted my rehabilitation would take two years. And my GP told me to ignore people who gave timeframes for recovery, then proceeded to say I could experience improvements for up to two years.

Today I have minimal functionality in my left hand; a slow, uneven gait; central nervous pain and discomfort from spasticity. I'm continuing with rehab and remaining hopeful, while adapting to the idea of lifelong disability.   

My wedding anniversary is also in April. Two years ago on April 9, I moved from the stroke ward to the rehab unit and prevailed upon the nurses to let my husband sleep in the empty bed beside me to celebrate our 16^th year of marriage.

My husband remembers this as a hopeful time. Being moved to rehab was "a sign of progress," he says. I remember him visiting me after a full day of work – bringing me freshly-laundered clothes, tucking me in. I imagine him going home afterward to eat a late dinner alone. He lived on Panda Express during that time, gave into a few tears. I have tried to discover the details of this story from his point of view. Because it is as much his story as mine. His life has changed as much as mine.

A therapist from the rehab unit expressed surprise that my husband has stayed with me. "Do you know of spouses who leave?" I asked with equal surprise.

"Yeah," she said. "They can't deal with it."

Thank you, Ian, for vowing to stand by my side and continuing to do so in sickness and in health.

Ian and Marcelle – April 9, 1994

Connections

The right hemisphere of the human brain has one set of motor neurons to control all movement on the left side of the body. Because the stroke damaged that section of my brain, I now make bizarre involuntary movements – similar to a dog that shakes its leg during a belly scratch. I rub my left eye … my fingers straighten.

My hope for regaining control depends on forging new neural connections between my healthy brain tissue and nerves. I often feel electrical impulses shooting through areas of my left side. When I feel these twinges, I visualize my neural pathways branching out like a root system.

The stroke has had a similar effect on my relationships. Word of it traveled to my family and friends; it stretched into the past to people I hadn't heard from in years; it branched out to friends of friends and total strangers.

The blog has contributed to this phenomenon, connecting me with survivors across the continent and readers around the world. I used to think people who put their lives on the Internet were odd. Who would want to be so public? Now I can't imagine recovering without it. Suffering in isolation makes the suffering so much greater.

Like my motor neurons, these human connections move me. In the face of mortality, fears and pretenses melt away, making my interactions honest and intense. Even strangers have become more accessible – they initiate conversation, they offer help.

The stroke has shown me that the pathways between us exist. We just have to access them.

Like Father, Like Daughter

My father recently survived his third stroke. My siblings and I decided he could no longer live alone amidst the cows and corn of rural Wisconsin. My sister located an assisted living near her home in Houston. My brother flew to Wisconsin in a snowstorm to pack Dad's treasured things. And I joined Dad last week in Houston to help him settle in.

After my stroke Dad stayed with me my first month home from the hospital. He chauffeured me, helped me shop, and bore the emotional upheaval as I started to adapt to this huge change in my life.

I flew to Houston on my own, drove a rental car, stayed in a hotel. I did little exercise. By the end of the week, my left side was in spasm and I could barely walk. After working so hard at recovery, I was disheartened to realize I could lose so much of what I've gained during times of stress and exhaustion. Sitting with Dad in the home's communal dining room, I sometimes felt I fit in better than he among the walkers and wheelchairs.

Dad still has physical abilities; he lost his driver's license and has trouble communicating. I chauffeured him and helped him shop. During our final excursion to Best Buy, I plonked down in the store-provided wheelchair and Dad pushed me around as we sought to locate a corded phone without too many confusing buttons. "People probably think I'm here to help you," Dad said. "But you're really here to help me."

Being able to help made my discomfort bearable. While I wasn't able to carry boxes or assemble furniture, I was well-equipped to share the emotional upheaval as Dad started to adapt to this huge change in his life.

My Peeps

About 20-30 percent of the 795,000 Americans who have strokes annually live with a long-term disability. Yet, outside medical facilities, I have encountered only two of them. Shortly after my release from rehab, I was in the passenger seat of my Dad's car waiting at a red light and watching a pedestrian limp-skipping across the street to catch a bus. His curled arm was on the same side as his lame foot.

"Look! He had a stroke!" I was fascinated as I watched the man pinch change from a coin purse with his bird-claw fingers. The sighting gave me heart. Here was someone like me getting on in the world.

Since then every time I see someone with a limp, my eyes dart to their same-side arm. No, not a stroke.

Then just before Christmas in the Home Depot parking lot, I spotted a woman coming toward me. Limp. Curled arm. Stroke. I tried to catch her eye to give her a smile, but she looked right past me. I was disappointed. I yearned to connect with her … to see the recognition in her eyes of our common burden as if that, somehow, would lighten our loads.

We survivors need some sort of handshake – like a fist bump or a high five – a way of acknowledging the deep understanding that comes from our shared experience. But with bum hands on random sides, a handshake could prove difficult.

Maybe we could salute with our good hand … being careful not to whack anyone if we're carrying a cane.

Maybe we should just stick with eye contact and a smile.

Or I could say: "Here's to you, fellow survivors. Thanks for lightening my load."

Ten Steps

For more than a decade, I've belonged to a women's group that gets together every Saturday morning. We meet in a Craftsman-style house. There are ten cement steps leading up to a broad wooden porch. The steps are uneven with no railing up the right-hand side. Post-stroke, when I first tackled those steps, I climbed only with my strong leg, using my cane for balance and pausing often to rest.

Each week my Saturday women would stand on the porch watching like nervous mothers and exploding into smiles when I reached the top stair. In time I found the courage to climb leg over leg.

A couple months ago I set a goal of climbing the stairs without my cane. One of my Saturday women would climb beside me so that I could grab her if I lost my balance. Last weekend I tried for the first time to climb alone. I lost my balance on the eighth step and called for help. Then I went back to the bottom and tried again. That second time I cleared the tenth step. My Saturday women hugged me and we cried.

A long time ago my first boss taught me this: "Marcelle, you're going to encounter two kinds of people in this world – those who pull you up and those who pull you down. The ones who pull you up are 'Balcony People' and those are the people you want in your life."

She was right and I found mine standing on a porch.

To the Rescue

Almost two years have passed since my golden retriever died. My subsequent stroke prolonged the grieving-before-replacement period because I am now incapable of walking a dog, training or cleaning up after it.

But after much fawning over friends' dogs, I decided that the benefits of daily interaction with my own would outweigh the challenges. Clearly, I could not manage a puppy ... but an elderly adult?

I searched the online pounds and rescue organizations and discovered Bella, a nine-year-old Golden Retriever found in a park in Taiwan. Filthy and emaciated, she was nursed back to health over the course of a year. In July she was flown to the United States because she had a better chance of adoption here.

I fell in love with Bella before I met her. I identified with her fight for survival and the drastic changes in her life. The thought of helping her filled me with gladness and hope. Her healing power had taken hold already.

My husband and I made an appointment to meet her. She had ear infections, fleas, worms, a bleeding teat, a massive fat lump on her chest, and she didn't smell good. We brought her home anyway.

Four baths and as many vet appointments later, she's looking and smelling better. She lies by my side as I write this – a reminder of the extent to which we must sometimes go to give life another chance.

A-Team: The Miraculous Mira

I lie on my back and watch Mira work on my arm – her eyes half-closed as she listens to my body with her fingertips, searching out my cold places, my twisted tendons. She coaxes my spastic muscles into their proper place … snap! She is sculpting me. She is an artist … a healer … a life coach. For me to call her masseuse would be to ignore her decades as a physical therapist and what seems to be her personal connection with God.

Mira came to me as a gift from my brother who had done some free legal work for her. When she first arrived at my door, I was expecting a massage. Yes, she soothed my traumatized body, but she also addressed my spirit. She added me to a list of patients on whom she meditates nightly; and at each of our appointments she offers her visions to me as messages of hope. "I know, it sounds ooga-booga,” she says in her thick Croatian accent.

Whatever it is, my appointments with Mira are the best part of my week. I always feel more hopeful afterward and have noticed marked improvements in my body wherever she focuses. Mira takes on only select patients – a baby with leukemia, a new amputee, an elderly man so deprived of touch he cries in her hands. I think she is one of the most generous, loving people I have ever met. She actually gave one of her kidneys to a friend: "Whats I need two for," she asks and rolls her eyes skyward. “Thanks God.”

A-Team: A is for Arbi

I had been Arbi's chiropractic patient and a member of his gym for years. I always knew he had healing hands. What I didn't know was that he could do more than crack my back. After the stroke, he put my gym membership on hiatus. I called him in February to say I was ready to come back. He wanted to train with me the first time.

"You don't have to do this alone," he said. "I'm right here with you – through good times and bad. We will do this together." I dropped my blasé physical therapist and have been working with Arbi since.

Three times per week, Arbi and I do an hour of weight training in the gym. My former PTs focused solely on my leg. The problem with that approach is that the wires on my left side are crossed: I exert my arm, my leg moves. Arbi trains my whole person to teach me simultaneous control over multiple muscle groups. The video below shows us working together in July 2011 – 15 months post-stroke. (My wonderful sister-in-law behind the camera.)

After the gym, Arbi treats me with electrical stimulation, which tires my spastic muscles, allowing him to stretch them – more effective than what I do on my own because the very effort of self-stretching makes me tense. Arbi has filled me with hope that we can beat my hated spasticity. I am so grateful to him, I volunteered to help launch his new website: www.arbiderianchiropractor.com. Editing the testimonials confirmed my impression that he's a swell guy. Plus, he's a Trojan fan … and buff.

A-Team: Mother Teresa

Transferring to Teresa's care for occupational therapy meant changing facilities and a cross-town drive twice weekly. Teresa did not wrench my fingers open like the Witch OT, she caressed them until they unfurled like petals in her palm. As she stretched and massaged my arm on her desk, I talked of my despair and tears appeared in her bright eyes. Her compassion set her apart.

Teresa did not say my hand would return to normal, but she helped me believe it could progress if I worked at it. And I have worked – always diligent, but not always successful. One session Teresa dropped items on the floor for me to pick up. I wound up sobbing on the linoleum in total frustration. She crouched and held me.

"Am I your only patient who has breakdowns?" I asked.

"You’re the second one this morning."

That gave me some compassion for Teresa.

Teresa's been an OT for 17 years. She says most stroke patients don't do their exercises. One day I asked her about the difficulty of strengthening the muscles that open the fingers. "How have your other stroke patients dealt with this?"

"Marcelle, I've never had anyone come as far as you."

"Well, that doesn't give me much hope," I said.

She looked me in the eye. "You've restored my hope."

And so I have given her what I came seeking and found in the first place. Now as I struggle through the tedium of rehabilitation, I'm not doing it just for myself, but for Teresa.

Driving Miss Lazy?

After the stroke my neurologist reported me to the DMV, which resulted in a suspension of my driver’s license. I spent eight months completely dependent on family and friends for transportation.

I have lived in Los Angeles all my life and have ridden public transportation only twice: Once on the new metro system simply for the novelty of it; and once as a teen in a story that ends with the punchline, "Say what?! Youz on da’ wrong bus!” Post stroke, no one, least of all me, thought I should take a bus. One of my regular appointments is a cross-town trek. I was using every ounce of energy I had in therapy sessions. How could I cope with long bus rides, transfers, and walks to and from bus stops?

At the gym where I exercise, the cardio equipment looks out a picture window onto a bus stop. I study its patrons while they wait: Hispanics and African-Americans, students and single parents, the elderly and disabled. I watched last week in wonderment as an oversized woman in an oversized wheelchair made a five-point turn on the sidewalk to back herself onto a platform that the conductor had lowered for her.

The many advantages of my life include having my own transportation and, during that relatively short eight months when I didn’t, knowing so many generous people who were willing to take me a distance along my road to recovery.

Gratitude List

Abby, Aline, Allison, Amy, Andrew, Angie, Annie, Ara, Arbi, Audrey. Barb, Betty, Bianca, Bill, Bob, Bonnie, Bryce. Carrie, Casey, Cathy, Cecelia, Charl, Charlotte, Chelsea, Chonita, Chris, Cindy, Claudia, Colin, Connie, Cynthia. Dad, Dave, David, Dean, Deb, Debbie, Denny, Devin, Dianne, Dick, Didi, Dru. Edie, Elizabeth, Emma, Eric, Erik, Erin, Ernie, Evan.

Faith, Francesca, Freddie. Gary, George, Gloria, Grace, Greg, Gwen. Haley, Hannah, Harmony, Harold, Henry, Holly. Ian, Irene. Jack, Jackie, Jackie, Janet, Jazmin, Jee-Jee, Jeff, Jeff, Jenny, Joanie, Jodi, Joe, Joel, John, Jono, Judith, Julie, Junie. Karen, Karen, Kate, Kathy, Kathy, Kayden, Keely, Ken, Kim, Kirsty, Kit, Kris, Kristen.

Larry, Laura, Leah, Lela, Leslie, Liam, Linda, Linda, Linda, Linda, Liz, Logan, Lorraine, LuAnn, Lyn. Madeline, Maeve, Margaret, Maria, Maria, Marilyn, Marilyn, Mary, Mary, Mary, Mary, Mary Beth, Maryann, Matthew, Mel, Melinda, Mia, Michelle, Mickey, Mindy, Mira, Mom. Nanci, Nancy, Nancy, Natalie, Nate. Patti, Paul, Paul-Louis, Penny. Randy, Rebecca, Rebecca, Renee, Rex, Rex, Rhonda, Rich, Richard, Rilla, Rob, Robin, Robin, Roger, Ron, Ruth, Ryan.

Sara, Sarah, Sarah, Sarah, Scott, Sean, Serena, Sherrie, Solomon, Sona, Stacey, Steve, Sue, Suki, Susan, Susan, Susan, Susie, Susie, Suzanne, Suzi. Ted, Teresa, Teri, Terry, Thomas, Todd, Tom, Tony, Tracy, Trudy, Twinnie. Val, Vanessa, Vicki, Vodie Ann. Wayne, Wells. Yolande. Zachary.

I used to have things on my gratitude list. Now it’s all about you.

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.

Lucky

An old friend in a business suit appeared by my bedside in the stroke unit. "I built this hospital," he told me. We had lost touch. He is a VP in hospital administration now, but he started his medical career in physical therapy working with – get this – stroke patients. "Anything you need, honey, you just let me know. My office is right downstairs."

From that point forward it felt like doctors became more accessible and nurses became more attentive. Most importantly, here was someone who knew me and what I was made of.

He was my first crush in seventh grade. By high school we were acting together in plays. We took ballet classes and college-level French courses together. "You have a long, hard road ahead of you, Marcie. But if anyone can do it, you can."

His words became a beacon once I started to face the naysayers and statistics. As I reflected on how lucky I was to have such an advocate (and worried about the many who don't), a vision from long ago came to me: A scalpel piercing a sheep's eyeball – liquid squirting out, the rubbery, chicken-skin look of cartilage.

I phoned my friend. "Were you my lab partner in biology class? And did you agree to dissect the sheep's eyeball if I would write the report?"

"That was me, honey."

My hero.

Paul and I get into character for a one-act version of Sweeney Todd. (1982)