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.

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.

Cane Craft for Kids

I often receive compliments on my hand-decorated cane to which I reply, "Isn't it great? My nieces did it!" After coming home from the hospital, I wanted to prove to my nieces and myself that we could still have fun; so I arranged a play date to decorate my cane. We chose to shop for materials together at a craft store, but the 3-D paint and self-adhesive gems also can be purchased online.

To make your own personalized cane, you will need:

(1) plain cane
(1 set) 3-D paint suitable for metal/wood
(1 package) self-adhesive gems
(1-2) children

The paint squeezes directly from the bottle meaning no messy brushes to clean afterward. It comes in a variety of colors including neon and glow-in-the-dark. The gems come in all sorts of shapes and colors. We picked some sparkly dragonflies and butterflies.

If you have more than one kid – let one of them do the top half, and one the bottom. Be sure to tell them to stay away from the handle and the tip.

I forgot to allow time for my cane to dry and had to rush off to a doctor's appointment, which created a drip effect in some places. Plan on letting your cane set for at least a couple hours before using it.

Besides being reminded of my nieces every time I receive a compliment, I never have people mistaking my cane for theirs in the rehab gym. My colorful cane has been a great way to cheer up this otherwise dreary accessory to my disability.

Happy decorating!

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.

Getting Better vs. Getting It Done

I manage three household tasks: Washing and putting away dishes, washing and folding laundry, shopping and putting away groceries. I do these things one-handed, which means I get things done only slightly faster than Congress. Imagine moving wet laundry from washer to dryer with one hand; moving dishes from rack to cupboards with one hand; carrying grocery bags from car to house one bag at a time.

The BIGGER problem is that I should be using my injured hand to assist with these tasks because that is the only way to retrain it. I can't expect that just because I improve at my formal hand exercises, I'll be able to grasp a T-shirt and fold it, or drop silverware into the correct slot in a drawer. I am going to have to practice these things repeatedly. However, when I attempt to do these things with my affected hand I often get so frustrated I default to using the good hand so I can get the job done.

It reminds me of my working days as a manager trying to implement an improved business process at the same time that daily business needed attending to. How can a business slow down productivity now for the sake of developing a system that allows it to become more efficient later?

Of course the Big Boss always wants both: Do it now and do it better. And in this case, I am the Big Boss. Sigh. Too bad I can't just fire myself and bring in somebody younger.

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.

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?

The A-Team vs. My Bicep

The bicep is the most powerful muscle in the arm. When it becomes spastic, the stroke survivor's arm curls. Working against the bicep to straighten the elbow and use the hand becomes difficult or impossible. My bicep was inflexible as stone for more than a year.

Fourteen months after my stroke, The A-Team finally agreed that my shoulder had "opened," and that we could tackle my bicep. On Tuesday, July 19, The Miraculous Mira massaged my arm like she was tenderizing beef. "Your bicep will open within the next 10 days," she told me.

On Wednesday I reported this to A is for Arbi, who put me on the shoulder and chest press machines in the gym to stretch my bicep. Electrical stimulation on my arm that day triggered spasms that had me shuddering for half an hour. Arbi then stretched my arm by holding my elbow in place, turning my hand palm upward, and bending it backward at the wrist.

On Thursday Mother Teresa did her own brand of stretching and massage, twisting my forearm outward (supination). She taught me to stretch with a pillow under my tricep, palm turned upward. I started assuming this position for sleep.

I did my part: I exercised, I stretched, I believed. And Saturday night in a relaxed state as I settled down to sleep, I heard the first crack.

My bicep cracked twice that night – loud, like a knuckle. It felt wonderful. And now it is open – soft as a puppy's tummy. Onto my forearm…

Unbrace Yourself

I left rehab with an Ankle-Foot Orthosis (left) to support my ankle and keep my foot from dragging. I hated it. I hated having to wear long socks in hot weather. I hated having to put on a brace and shoes in the morning just to walk to the kitchen for a cup of coffee. I hated wearing shoes that were two sizes too big so they could fit the brace.

I googled alternatives and found the Freedom Soft Footdrop Brace (center). I discussed it with my since-dismissed physical therapist who said it wouldn’t give me enough support. I ordered it anyway (July 2010, $120). By allowing more ankle flexibility, my muscles strengthened.

When I started with Arbi (Feb. 2011), he said, "Marcelle, why are you wearing shoes that are too big for you? No wonder you walk funny." He directed me to a sports brace (right). It was only $20 and I could wear it with my regular shoe size!

The first few days wearing that brace my foot felt like it was going to roll over and break off at the ankle. I questioned Arbi – but he was firm and so was the brace. Within weeks, my ankle strengthened and, in July 2011, I stopped using a brace. Period.

I read in a fellow survivor’s blog that she had become dependent on her AFO because it had prevented her muscles from developing. I don't know if what I did would work for everybody. But I am glad I ignored the skepticism of my first PT and trusted Arbi enough to follow his advice. Half the battle is knowing who to listen to and when to listen to yourself.

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.

Assembling the "A Team"

I had several bad experiences with healthcare professionals assigned to my case: An occupational therapist, a neurologist, and a physical therapist who, though he specialized in neurological conditions, should be rehabilitating buff guys with sports injuries. My progress was simply too slow for him, and I left every session heavy with his disappointment.

Fortunately, previous medical problems taught me I don't have to work with the first provider assigned to my case, that I need to trust my instincts, and that I need to act as my own advocate no matter how much I want to lie down and play the sick patient.

The professionals I choose to work with have several things in common: They listen, they respect my instincts, and they are able to clearly communicate their knowledge to me.

My medical team consists of:
1. Occupational therapist (covered by insurance)
2. Exercise physiologist/chiropractor (not covered)
3. Massage therapist (not covered)
4. Acupuncturist (covered)
5. Doctor of Physical Medicine (covered)
6. Neurologist (covered)

I call the first three my "A Team." Each of them has done as much for my emotional rehabilitation as my physical. In the 21st century, doctors who don't understand the importance of attitude – and their influence over it – should consider an alternative career … pouring cement, perhaps.

I've talked to people who have trouble finding the right health care provider. My advice: Keep looking. A good one makes all the difference.

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.

Parking Lot Stalker

Recently at Trader Joe's, a car ahead of me pulled into the last handicap spot. I idled behind and watched as a gray-haired man stepped out and strode into the store. No cane, no limp.

It’s not the first time I’ve done this – hovered to judge a person who has snaked a parking space from under my nose. I have turned into a parking lot stalker. I never used to be this way. I used to pull around those waiting for a close spot to be vacated when plenty of open spaces were on offer at the end of the lot. I judged them as lazy and delighted in my willingness to exercise.

Inside Trader Joe's, I looked for the gray-haired man in the blue jeans and lumberjack shirt, rehearsing what to say to him. "Hello, you took the last handicap spot." Surely I would not need to say anything more. One look at my cane and brace would say it all: I deserved that space more than you did.

I decided not to confront him just before I spotted him cruising toward the cashier with his few items. Who was I to judge his need? Perhaps he has some invisible disability that's troublesome when he's tired. I decided it was not worth the risk of being that most offensive of combinations: both righteous and wrong.

After all, I had found a suitable space in the next aisle only 20 yards along. And I was perfectly capable of walking that extra distance. In fact, I probably benefited from the exercise.

Taking Inspiration From FDR

As a political scientist, my father devoted time to studying and writing about Franklin Delano Roosevelt, our 32nd president. He recently suggested that I watch Sunrise at Campobello, the story of Roosevelt contracting polio and becoming a cripple at the age of 39.

Until it happened to me, I didn't recognize the profound effect of becoming disabled in middle-age. Unlike me, FDR never walked again, but after seven years of facing what we go through – the grieving, the depression, the redefinition of self, the hoping, the endless therapy – he decided not to live the quiet, comfortable life of a wealthy invalid but to run for President of the United States. Audacious!

Taking office as the Great Depression peaked, FDR shaped relief programs such as Social Security, which Americans have enjoyed for nearly 80 years. The political battle over these progressive reforms was as difficult then as it is today, and I wonder if the humility and compassion that FDR gained while adjusting to his disability gave him the courage and patience to push this legislation through.

My dad says that without polio, FDR wouldn't have become president because he would have run too early and lost to an entrenched Republican Party, which didn't become vulnerable until the Depression. My dad says that without FDR, Hitler would have won. In Hitler's vision of the world, invalids like FDR were candidates for euthanasia.

What a difference a cripple can make.

Rights of Passage

I just finished listening to an audio book set in 1969. The main character’s brother returns home from Vietnam missing both legs. As he goes store to store in his wheelchair looking for a civilian job, not only will no one hire him – he has to struggle with curbs, stairways and narrow doors.

I used a wheelchair for the first few months after my stroke. On one errand my husband parked our car in a handicapped spot, pushed me along the blue walkway up a ramp in the curb, and through the store’s automated doors. Somewhere along the way he said, "Thank God for the Americans with Disabilities Act."

The ADA passed in 1990 and includes regulations for disabled access to public places, accommodation for the communication-impaired, and anti-discrimination protections for the sick. The ADA has its roots in 1974 civil rights legislation, but the 1980s saw the regulations challenged in both the Supreme Court and Congress. Businesses were balking at the expense of compliance while activists fought back by trying to educate those in power.

The signing of the law by President George H. Bush meant that for the first time in history, businesses had to think about access for people with disabilities. Despite this success, I often wonder as I run my errands: Where are all the people like me? According to the Census Bureau, about one in eight Americans have a "severe disability." But I rarely see anyone more impaired than an elderly person with a cane.

Of course there are other barriers for the disabled to overcome before they venture out in the world – fear and shame among them. But one thing is certain: Without the provisions of the ADA, you would see even fewer of us.

Worldwide disabled statistics
ADA history

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.

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.

Trickle-Down Recovery

Healing from stroke has a hierarchy. The upper joints recover before the lower joints, and the leg recovers before the arm because it has the benefit of weight-bearing. So far, my recovery has followed this conventional wisdom. Where my experience has not aligned with medical lore has been in the timelines. My expectations and those of my family were that I would recover more quickly.

In the beginning my "failure" to meet recovery "deadlines" worried me. But I have since come to disregard the neurologists quoting statistics on the diagnostic front: Eighty percent of my recovery will occur within the first three months? NONSENSE!

I am continuing to make steady progress in my 16th month. Therapists and survivors with experience say that recovery continues for years. I hold onto these truths, and try to have faith that the comparative riches of movement and feeling in my upper limbs will trickle down to my struggling fingers and toes.

Here are some of my real-life milestones to the best of my recollection:

Leg
Week 3 — bend knee while lying on belly
Month 11 — bend knee with some regularity while walking
Month 15 — walk without brace

Arm
Month 1 — move shoulder joint
Month 4 — straighten elbow with effort
Month 7 — hold full weight in crawl position
Month 10 — hang onto moving bars on cardio machines
Month 13 — open fingers in relaxed position (index/thumb inconsistent)

Oh, What a Feeling!

My loss of sensation was as concerning as my loss of movement. In the hospital, family members would touch my fingers or toes and ask, "Can you feel this?"

"No."

Not only did I lose sensation in my lower limbs, I could not place them in space. With my eyes closed, I could not tell if my arm rested by my side or in your hands. My perimeter had become fuzzy.

As feeling began to return in those early weeks, I qualified it: There was vibration and pressure, but not touch – no sense of skin against skin or the texture of bed sheets.

Temperature returned during a rehab shower – strange signals from my left leg. My right leg felt hot water. So, this is what hot feels like, I told myself. To this day my left side feels heat more keenly than my right. Hot is insistent.

A different sensation emerged one day as my occupational therapist worked with my arm. Her hands were cold. And so this is what cold feels like, I instructed myself. Cold is subtle – it reveals itself from a distance.

Without looking, I still cannot tell if my fingers are open or curled – grasping an object or empty. To test my sense of touch, I ask my husband to brush a cotton swab beneath my fingertips. With eyes closed, I try to tell which finger he's touching. For the first time last week, (15 months post-stroke), I was finally able to identify each finger correctly.

Who knew that having my husband tickle me with a Q-Tip could be so exciting?

The Antidote to Self-Pity

As I began to examine my depression post-stroke, I recognized that I was full of self-pity. "I am too young for this." "I took care of myself, it shouldn't have happened." "There is still so much I want to do with my life." Etcetera, ad nausea. These thoughts always led to despair, but I didn't know how to turn them off.

I wondered, what is this instinct for self-pity? As a child, I received pity from adults when I was hurt, and that helped me feel better. Was that what I needed? I imagined sharing my thoughts and seeking comfort from others. But, wouldn't people soon tire of my complaints – as I had tired of them? And what were they supposed to say, anyway?

I turned to a wise girlfriend. "How do I get out of self-pity?" I asked.

"Self-care," she answered. "When the self-pity tape starts playing, do something nice for yourself."

I took baths with muscle-relaxing oils. I lay on my back in bed listening to audio books on my iPod. I scheduled play dates with my niece and nephew. During these brief periods, I did not reprimand myself for not doing my rehabilitation exercises.

After a couple months, I noticed that the self-pity tape was no longer playing as frequently. Now, when it does receive airtime, I know how to change the channel.

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.

The Value of Acceptance

This time last summer I was in a dark place, exercising four hours every day and still not seeing the results I wanted. My imagined life as a disabled person stretched before me unwanted. Two years, I told myself. If, in two years, I can't stand this anymore, I will jump off a bridge. In tears once again when my husband arrived home from work, I followed him into our sunny garden to talk.

"What I've been trying to figure out," I told him, "is why I was willing to work hard at a job for 11 years to make things better, but I am so quick to give up on myself."

"Why do you think that is?"

"Because at my job, there was the promise of something better – a raise, a promotion. But now, I'm working so hard just to get back to where I was."

"It sounds like you haven't accepted what's happened," he said. "You're not trying to get back to where you were. You're trying to move forward from the day you had the stroke."

Oh.

So long as I focused on what I used to be or what I wanted to be, I could not be happy now. I had to realize that exercising like a maniac was not going to get me "there" any faster. I had to find ways to enjoy my life now and balance that with rehabilitation.

I used to equate acceptance with giving up. Now I see it as a gateway to happiness.

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."

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!

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.

Recipe for Recovery

Dear Ana,

Six weeks after my stroke at our third appointment you told me, "I haven't seen anything that helps stroke patients. You're pretty much going to have the functionality you have now. You need to learn to adapt."

At the time, my left hand curled into a useless fist. I could not even twitch a finger.

At our next appointment, I told you I was transferring to another occupational therapist. What I didn't tell you was that I had gone home sobbing and spent the next two days in bed, paralyzed from despair. Your words haunted me for months.

Fortunately, a chorus of voices rose around me, saying you were wrong.

Last Sunday I made dinner for 12 people. I held a grater as I skimmed lemons across it to make a zest; I minced garlic with a two-handed Ulu blade; I held tablespoons flat and steady as I filled them with spices and oil; I poured marinade into a bag of chicken pieces and sealed the Ziplock with both hands; I husked corn.

Dear Ana, there is something that helps stroke patients: Hope.

In future, if you can't give it to your patients, please don't take it away.

Sincerely,

Marcelle Greene

Such a Spaz

When I was a kid, one of my favorite expressions was "Don't have a spaz," which I would say to someone who had lost emotional control. I didn't know it then, but spaz is a derivative of "spasticity," which is a common result of stroke. It describes a state of continuous, uncontrollable muscle contractions.

Absent the proper signals from my brain, my fingers clench into a fist. My arm curls toward my chest. My foot turns inward, pulled by tight muscles along my inner leg. My chest constricts like a steel band around my lung. Sometimes it's hard to breathe.

I am on two types of medication to counteract this problem – daily oral baclofen and quarterly Botox injections.They both ease but do not eliminate the symptoms.

My therapists tell me that I can learn to control the spasticity. For each movement, I concentrate on extending one set of muscles then contracting the opposing muscles. To straighten my arm, I focus on relaxing my bicep then recruiting my tricep. It's exhausting mental and physical work. I sometimes break a sweat just moving a can of tomato paste.

My no-longer neurologist told me that I'd be fighting spasticity the rest of my life. I'm not sure how that statement is supposed to help me. As someone who cultivated flexibility during 10 years of yoga, the idea of spending the next 30-plus years with half my body contracted totally makes me have a spaz.

It Had To Be Me

When I had the stroke, I was no longer working, but I still had medical insurance through COBRA. And my husband had just landed a good contract.

And yet I know people without medical insurance or a job.

My parents are still alive and active. My father stayed with me the first month I was home and my mom drove me to endless medical appointments.

And yet my brother-in-law, cousins and three high school friends
have lost a parent in the last year.

I live in a beautiful, handicap-accessible house, and employ a maid and gardener.

And yet I hear of those who cannot afford to stay in their homes.

I have friends who believe in service to others as a way of life. For months, they filled my refrigerator with meals.

And yet I see people on the street asking strangers for food.

I know parents struggling to raise their kids; and I have young people in my life who give me great joy.

And yet I have no children dependent on me.

If this had to happen to someone, it's best that it happened to me.

"Strength of heart comes from knowing that the pain we each must bear is a part of the greater pain shared by all that lives.
It is not just our pain but the pain."

– Jack Kornfield

Rehab: The Movie

Unlike every other thing about rehab, I loved my therapy sessions. And I was a refreshing change for my therapists; I had a good understanding of my body and a determination to get better. It was this, combined with my sense of humor, which prompted them to film me for a celebration of Rehab Week.

Most of the footage was shot in the gym at the rehab unit. Some of it was shot during my home visit a few days before my release. My therapists and I looked through the house for hazards and discussed strategies for coping without their help. My husband had already rolled up the carpets, put a handicap bar and seat in the shower, and added a second railing by the kitchen stairs so I would have something to hold onto with my functional hand in either direction.

I am grateful to have this footage as a benchmark of where I was. One of the hardest things for me about living with this condition is to celebrate the progress that has been made rather than focusing on how much further I want to go.

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.

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)

That Is the Question

[Q]: How does a non-smoking, non-drinking, exercising, healthy-eating, low-stress mid-lifer have a stroke?

Doctors [A]: Dissection. The carotid artery that carries blood to my brain developed a split in its interior wall. A clot formed and a piece of that broke off and blocked a vessel in my motor strip.

Me [A]: In short, a corroded carotid.

[Q]: Why did I have a dissection?

Doctors [A]: Twisted arteries. Neck stress from yoga and chiropractic. Fluctuating blood pressure.

Friends and Strangers [A]: To learn a life lesson. To find my path.

Me [A]: I have gone over and over things I did that may have led to the stroke. In yoga class the night before, I turned my head while in shoulder stand. A few days before that, I self-administered a neck adjustment that emitted a loud crack. Just months before that I was showing off for my three-year-old nephew by doing a headstand, and he toppled me like a tower of blocks. I’ve also pondered what I needed to learn that took something this drastic to get my attention: Patience. Compassion. Balance.

No matter what I think, or what I'm told, I always come back to one truth: None of the answers can change what happened. And so there is only one question that really matters.

How do I go forward from here?

Powerful Words

Years ago, I memorized prayers to meditate on – Christian, Buddhist, Hindu. The benefit was to put words in my mind that wouldn't otherwise be there.

… make me an instrument of Thy peace –
that where there is hatred, I may sow love …

In the early hours of Easter Sunday, my condition worsened. We had spent Saturday believing I had a mini-stroke, but a bad turn after midnight prompted the duty doctor in Baldwin Park to order me to a specialty unit in Hollywood. I overheard his phone call to the paramedics:

"Get her there as soon as possible – sirens going the whole way."

… whatever you do, make it an offering to Me – the food you eat,the worship you perform, the help you give, even your suffering …

My husband arrived in time to ride shotgun. I lay in the back of the ambulance reciting as the driver blared the sirens and swore at cars to move out of our way.

… He maketh me to lie down in green pastures,
He leadeth me beside the still waters …

In the ER, I overheard the neurosurgeon's conversation with my husband as they studied an image of the black spot that had emerged in my right hemisphere:

"… irreversible brain damage … "

… grant me the serenity to accept the things I cannot change …

"Will her language be affected?" my husband asked. "She's a writer."

Oh, Great Powers of the Universe, thank you for my thoughtful husband.

And thank you for sparing my words.

Call of the Sirens

For months afterward the cries of an ambulance pulled me back to that morning: Awakening to the discomfort of a strange arm beneath my head. Hurtling it out of the way, only to have it bounce back and disturb my sleep again. Opening my eyes and realizing the offending arm was my own. There were my wedding rings on the fourth finger of my left hand.

“Move your left arm,” I commanded myself. It did not move. Calling to my husband. Standing up and taking a few steps. Crumpling to the floor.

My husband arriving in the doorway. "What's wrong?!"

My irritation. Duh. Help me off the floor so I can tell you about my arm. His call to 911. "She's slurring her words."

Every time I heard the sirens, I replayed it, filled in the details, until I finally believed it. I had a stroke.

Now when I hear the sirens, which happens a lot in this city of mine, I think of "some poor bastard" whose life has changed. A man having a heart attack. A woman awakening beside the corpse of her husband. Compassion pours out of my heart and follows the sirens. I don't think they will ever be just background noise again.

Blindsided

I awoke in the middle of last night to utter blackness. No display from the digital clock, no nightlight from the bathroom. I blinked and blinked but could not clear the darkness.

I'm blind! My God, I've gone blind!

Heart racing, I woke my husband …who determined we were having a power outage.

An extreme reaction? Maybe. But, that's how it happened before. I went to sleep on Good Friday 2010 with the full physical and mental capabilities of a fit 45-year-old, and woke the next morning unable to move my left arm or stand on my left leg.

On that morning there was no panic – only confusion. It didn't occur to me that my life could change overnight. Stroke. When I returned home from the hospital a month later, I would look at the bed that had once been my haven, and I would think "the scene of the crime."

Perhaps the biggest change since that morning one year ago is the way I see things.