Two Disabled People & a Dog

Like me, my dad had a stroke that limits his ability to walk.  Like me, he resisted buying a mobility scooter but, once he bought one, he loved it.

Dad also loves my dog – one of the few creatures on the planet with whom he can still communicate. Most of all, he loves lakes and waterfowl. My goal, since relocating him to Los Angeles after his stroke, has been to put him in the presence of these treasures as often as possible.

The challenge? How do I transport two scooters, two disabled people, and an elderly golden retriever in one car? Scooter trailers hold only one scooter, and anything bigger would be a hassle.

My solution was to have a Bruno Curbsider installed in my SUV. Dad operates the remote control to hoist the scooters while I keep them from hitting the car bumper (a concession in the position of the hoist that had to be made to accommodate the size difference in the two scooters). When I’m on my own, I can perform the entire operation single-handed – literally.

Once the scooters are loaded, I board the dog and stow the pet stairs she needs to climb in and out of the car, allowing just enough room for her to ride with her head out the window or to curl up and rest after our long stroll by the lake.

Presenting: Two Disabled People & a Dog 

It's a comedy!

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.

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.

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.

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.

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!

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

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.