Category Archives: Writing from the heart

Show and Tell

“I love you.”

Spiritual texts tell us that love is all around. We must show it, not tell it.

Even as a child, I wanted to be told. But, love, in the pragmatic world of poverty, extreme racism, and fear revealed itself as a practical thing, woven into the daily life of meals, clothes, and housing. During the summers we experienced love in visits to the south where hot days in the fields, riding the backs of cows, and filling buckets of clean, tasty water from an underground spring left us tired and happy. Eating freshly slaughtered chicken and meats, farm grown veggies and fruit— figs, grapes, and peaches were my favorites — left us feeling supremely cared for and nourished.

Those things were evidence of love, and for the adults in the world around me this evidence was proof enough. My father would say “show me, don’t tell me” and he was no hypocrite. He lived his life showing through baseball games, circuses, and rides on his back after Thanksgiving dinner.

I embraced the apparent truth that love was show, not tell.  And yet, as I grew into womanhood, I began yearning for the words. Perhaps it was because some of the folks that came into my life did not know how to show. They did not come from families of evidence.

In this world where I pray to see a do-nothing Congress get past the extraordinary racism buried in attacks against the president so that they can show some compassion for those who are less fortunate, I think that many of those people do not come from families of evidence. I want to be shown that they have an ounce of feeling for those without insurance, without food, and who have placed their lives on the line to defend them and now need support. Show me; stop the flapping lips.

But I’m getting off track.

Evidence, of course, is mixed. I also experienced evidence that love was far from our door. My mother was not one to exhibit as much as one millionth of an inch of sentimentality. Except for anger, which was constant, she kept her feelings sacredly locked within her until women came together to can fruit and vegetables, cook holiday meals, and talk about their husbands. Only once do I remember her exhibiting sorrow — it is the only day in my memory — and that was when my father pushed her to the floor. Show, don’t tell. The day remains in my mind like a photograph that cannot be destroyed.

Why, sometimes, do I want to hear the words?

I am blessed with a view of the campus park across the street. The leaves have dropped from the trees, and I have a full view of the trail that winds through the college. Parents with toddlers, dog lovers, boys holding girls, and boys holding boys; future track stars in heavy coats force their tired legs uphill. The setting sun presses fat fingered rays through empty branches, covering the brown shrubbery and happy hikers like dripping paint. It’s like a drawing that revals my memories of past walks in forests where I was shown, not told, about love.  Show me, I would insist, don’t tell me.

Yet.

I’m open to thoughts…

Short and Sweet

It’s November. I’m going make this short and sweet. I’ve been home since October 10, and I am giving a grand hallelujah for leaving behind me eight months of rehab for CIDP. I’m still receiving physical and occupational therapy at home, but the important words here are: at home. Therefore, as I get settled and comfortable in my new space, I’m going to be brief.

Gone, for the time being anyway, is the cacophony of doctors, nurses, nursing assistants, medications, and the politics of teaching people to treat people like people. Today is golden.

A couple of weeks ago M came over for dinner.

“I’m not washing paper plates!” she laughed.

I wanted to use paper plates. But I also wanted to rinse them off before tossing them away. I know; weird. M pointed out —um — that the purpose of paper plates is to avoid washing dishes, therefore we would use real plates and wash those instead.  I’ll tell you that this was guaranteed the best laugh I’ve had in eight months.

Strangely enough, in the past week I’ve received two e-mails where the word “luminous” was used. There’s a lot to reflect and a lot to enjoy. As little things come together — plants, a closet full of my own clothes, my stereo, books; the bedroom so beautifully arranged by friends who moved me here without my presence, luminosity reigns. Health is luminous. Equality is luminous. Beginning the work of eliminating the veil of belief systems built on the rocks of myths, stereotypes, and lies is filled with the power of luminosity. CIDP — oddly — retains elements of the luminous. Luminosity is now.

Once again, I’m inspired by the late Erma Bombeck. I heard that she had something she wanted to say to God if she faced him in heaven and he asked her what she had brought for him. The story goes that she said she would tell him she had nothing to give. She had used every gift He had given her, and there was nothing in her pockets to return. I dare to say she did this through luminous living; through being at home in her own skin.

Hallelujah. Home.

On: Equalization and TMI

“Stop.”

There was no mistaking her voice. My sister’s pretty clear when she doesn’t want to hear something.

And there’s plenty to hear about. The chefs are amazing. Last night I had the best turkey Tetrazzini and cherry crisp for dinner. Then, there is my roommate who cried for three nights straight because she didn’t want to be here (here being one of the best physical rehab hospitals in the country). I also could’ve gone on and on about how excited I was that two (did you get that?) of my doctors are active musicians.

I could talk about my physical and occupational therapists who are so familiar with CIDP that they gave me information I had never heard anywhere else.

Even more, I could talk about the equalizing effect that disability rehab has on all of our particular biases. Racism? Gone in the equality of learning how to walk again. Sexism? Ceases to exist when you’re trying to stand up straight or speak your words clearly without drooling. Homophobia? Everyone’s working hard here, and no one — at least no one I’ve seen — has the time or inclination to care about anyone else’s sex life. Christian,  Muslim, Jew, Sikh, Hindu, etc.? All are learning to stand again.

“I’m learning to drive,” quipped the woman practicing in a power wheelchair.

“I’m learning to walk,” quipped the gentleman who passed her with a grin.

The focus here is: get the body working again. It takes total concentration, exercise, and effort. In my view, physical disability can be a great equalizer. All  one’s energy is put into healing and rehabilitation.

So I could have talked about that. But I didn’t. Instead I told her about another equalizer. Everyone in every room is concerned about the same thing because we hear it every day from every nurse.

“Did you have a bowel movement?”

My sister was not amused. She has a sensitive stomach.

The truth is, being in bed a lot of the time is a constipating experience. How much time can you spend hating the person next to you because of his or her race, sex, or other beingness when your bowels are backed up to your diaphragm? Not much I can tell you. One’s work is immediate.

This place is beautiful. Sprawling acres landscaped to perfection. Simple and attractive rooms that are cheerful and clean. Nurses and nursing aides that are respectful, kind, and willing to help. And excellent chefs — did I mention the excellent chefs?

“Stop!”

Too Much Information.  Please, no words about my consumption of copious quantities of Miralax and prunes. It doesn’t matter that what goes in must come out.

What is important is that here, everything points to equality. The rest is TMI.

On: Listening to Words From My Ancestors

“She was so proud of you. That’s what she told me. ‘Sala wrote this play. I’m so proud of her.’  Yes she was. She was very proud.”

Hearing these words was startling. So much so that for the next several nights I woke with a zillion questions. Among them:

Would I have made different choices had I known how she felt? Would those words have encouraged me to work harder, be more focused? Would I have had more faith in myself and continued to write plays?

The first question could have been about how long it took for me to get these words. But it wasn’t. It’s been almost three decades since my Grandmother Hattie’s death. It’s been probably longer since I talked with my cousin in New York. But does it really matter when I received the words? My grandparents — all four of them — would say, “God is on time, all the time.”

Still, when my cousin shared my grandmother’s words about my creative work, I was surprised. My grandparents were solid, God-fearing, Southern folk. It never occurred to me to share my work in the theater with them. And when I heard that this was her response to the first piece I had written and staged, I rejoiced. So what if it was decades later.

“I didn’t always agree with what your father did as a boy and young man,” my Grandfather Julius said about daddy. “But when you see what a child has grown up to be, you feel proud.”

It feels like it’s always been this way in my family. Pride in another’s accomplishments exists but is not always expressed.

Sigh.

I wish I could have heard her words back then. But if I had, would my rocky imperfections have resulted in the dollop of wisdom I see in myself today? “God is on time, all the time,” say my ancestors.

I try to remember this when I have challenging days. Well, this and the fact that words have color, power, and vision.

“He was very proud of you,” a friend told me after my father’s funeral. “He just couldn’t tell you himself.”

More encouragement.

These folks’ words bring  light to me. Brilliantly healing and erasing an overshadowing need for approval and periods of self-doubt. I sit here snacking on tortilla chips and thinking about meals to come. It’s one of the things I do when the nerves in my hands are ultra sensitive. And I’m hearing my own voice inside saying, “better late than never.”

I am not rueful. I still have words to write.

When I started blogging I had a concept about words. With a reluctant nod to Merriam-Webster, I would choose a single word and match it with a color. It was a brilliant idea, but too much work. Anyone who has tried to express her truth in writing knows that the craft is anchored in the practical. I am faced with the reality of the limitations in matching a galaxy of words to a small palette of colors.

And again, there is the reality of CIDP. Anchored down by my commitment to stay as positive as possible, I stay away from words that dwell on negative emotions. Words have color, power, and vision.

Perhaps this has never felt more true than when I hear words that come from folks whose physical light has gone out.

God is on time, all the time.

On: Tenderness

Dignity

What was it that Otis Redding said? Oh yes.

Try a little tenderness.

Tenderness.

Why is it so challenging to bask in the love that we all desire? I believe that it is everyone’s intention to surround themselves with the softness of life. By that I don’t mean the softness of material things, the silks and satins and cashmere of life. I mean the softness that comes with peace of being… Soft. Tenderness.

It’s a quiet summer afternoon. I’m looking out the window and watching butterflies circle the backyard. They seem completely at ease. Is it because, amazingly, the black cat with the strange green eyes is at ease? Is she practicing cat tenderness?  She doesn’t move from her perch as the butterflies and birds flit around her. Only the gray squirrel raises a racket. There is no threat. Softness abounds.

Sunlight fills crevices like liquid. My soul is filled with tenderness. And I, who thrive on seeing the world through rose-colored glasses, want to believe that every human being loves the sun.

The poets, romantics, musicians, spiritual teachers — even scientists — testify to the healing power of tenderness. Go ahead, say it isn’t so. But you’ll find yourself in some very isolated company.

I’m reminded of mornings on my grandparents’ farms. Both maternal and paternal grandparents knew the power of tenderness and peace. My own memories allow me to understand why my mother, in her dementia, retreats to a place of softness and safety.

Not too long ago, I was asked by a health practitioner to remember what that tenderness feels like in my body. I was happy to revisit that glorious childhood experience. Vacations were watercolor mornings, filled with strolls amid the corn, watermelon, and tomato fields with paternal and maternal grandfathers. For me, our small farms and communities played in my mind as barricades against treacherous white men whose daily bread filled them with the hatred required to circle the south looking for unarmed black men and boys.

“Remember what that tenderness felt like,” they say. It’s because currently my life requires the wondrous gift of tenderness: regular rest, naps, real food and more proteins (did I tell you I now eat poultry as well as fish? Gone, gone are those days of self-righteous food Puritanism!) I eat vigilantly, and monitor my emotions. “Get eight hours sleep,” said my dear physiatrist Dr. J.

For 40 years when I thought of South Carolina away from my grandparents’ homes, I thought of a place contaminated with murder and the blood and bones of enslaved black people. With my maternal grandparents gone, their home and land sold, and my estrangement from the conservative religious views of the South, there was no reason to return to that place. History suffocated tenderness.

Then I attended a family reunion in Myrtle Beach and the feelings flooded back. The signs on stores, restaurants, and bathrooms and drinking fountains — “colored” and “white, ” placed there to kill the human spirit while threatening the physical body — were gone.

Those signs had pitted my tender heart against my gentle maternal grandfather. When I was about 10 years old, he took us into the city of Sumter to run errands and buy sweets. As if in slow motion, I found myself bowing my head to drink from a fountain clearly marked “white only.” My grandfather did what he had to do to protect me.

He grabbed me by the collar with such force I thought I would choke. My lips never touched the water. Later on, sitting on the porch in his arms, surrounded by the night songs of frogs and crickets in a dark so black you could not see the outline of trees, and the smell of the forest so sweet I wanted to wrap it around my skin, I came to understand three things:

the incredible love and tenderness in the heart of the man forced to take such action;  the incredible love and tenderness in the heart of the man saddened by his own action and; the incredible love and tenderness in my own heart that allowed me to keep loving him.

Tenderness in its myriad forms — family, church, and community — ensured our survival. Tenderness has contributed, in spite of the traumas of living, to the person that I am.

It is a tender summer day and I wonder: If every person, politicians especially, accessed a single memory of tenderness, would the world be a very different place? I, who thrive on seeing the world through rose-colored glasses, would like to think it so.

On: Extraordinary

“Extraordinary.” It sparkles with power. It’s also a twofer. It supports tenderness as well as harshness.

It is extraordinary that, after this journey of being away from home for four months, I wake with feelings of gratitude rather than self-pity. It is extraordinary how the path of patience seems to anchor me to a sense of humor. It is extraordinary what I am learning about myself.  I underestimated my own psychological power and  physical endurance.

Within a skilled nursing facility, those who advocate for themselves get stronger. Those who cannot — because of fear or frailty — walk an extraordinarily stony path. Being surrounded by other patients (and some very crappy nursing assistants) also presents the opportunity to develop an–extraordinarily– macabre sense of humor.

One afternoon, the nursing staff ran frantically through the halls thunderously slamming the doors to all rooms. Then silence. Fifteen minutes later they, just as frantically, opened the doors. I asked why.

“The undertaker’s here and we don’t want people to see.” Oh, okay.

Imagine my extraordinary surprise when less than ten minutes later, a pale, sad-faced man in a pitiful black suit slowly passed my room pushing a gurney with — yes, you guessed it. He was the undertaker.

“Stick a fork in me,” I said. “I’m done.”

But I’ve kind of wandered away from my point…  The word is extra plus ordinary. And I’ve spent decades dancing around the ordinary.

“Do not settle for mediocre.” It was a worthy and valuable teaching. But, somewhere in my child’s brain the words got scrambled.  Instead, my ears heard my parents say “We will not love you if you are ordinary.” So I wanted to be extraordinary; to be the best.

Ironically, I didn’t know what my best was or how to achieve it until this past year when I was diagnosed with CIDP — chronic inflammatory demyelinating polyneuropathy. (Learn more here: http://www.gbs-cidp.org) I think about how I’ve straddled the abyss of desire for public recognition and the fear of dismal failure. Yet, every once in a while I’d get a glimpse of truth that pushed me into the extraordinary.

I was having lunch with some friends. We were talking about dreams for wealth and fame versus living an effective and “wealthy” life as an ordinary person. A woman, a former model and gifted singer, sang to us.

Just ordinary people
God uses ordinary people
He chooses people just like me and you
Willing to do as He commands
God uses people that will give Him all
No matter how small your all may seem to you
Because little becomes much as you place it in the Master’s hand
                       The late Danniebelle Hall

For a moment the spell was broken. I had crossed the abyss. I was free and my quandary about the ordinary was cast aside. Everyone, no matter what his or her calling, is extraordinary in ordinary ways. As the great spiritual teachers proclaim, inside every person is greatness. When it’s time to see it, we feel it.

The truth is, every day is a new test and a new blessing. After all, it is now seven months of not being free to travel as I would like; seven months of living inside one building or another without driving or going as I please.

Two weeks ago, neighbors, across the street from my friend at whose home I’m staying, invited us to dinner in their backyard. Everything was extraordinary. The night sky, the candlelight, the backyard, the smells, the sounds. The gourmet food that the hostess prepared herself.

Like thousands of pink rose petals falling around me, I felt something extraordinary. Peace.

On words that begin with L: Laughing. Loud. Love.

Daddy laugh

Laughing.

I watched my father eat: turkey, ham, selected pieces of fried chicken, greens, potato salad, cranberry sauce, homemade rolls. There were assorted pies, cakes, and desserts. We all ate like that. It was Thanksgiving. Sometimes Christmas. Sometimes Easter.

Like many Americans creating their versions of a Norman Rockwell painting, we gave thanks for our abundance before washing it down with lemonade (kids) or booze (grownups). Then Daddy rolled from his chair to the floor, landing on his hands and knees and crawling away from the table as children competed for a seat on the human horse.

In those moments, there were no concerns.  Racism and segregation were far away from the plate. Family arguments stayed out of the soup. All earthly concerns were buried beneath an avalanche of laughter.

Loud.

Daddy would throw his head back and release a sound so all consuming—and loud—that everyone was affected. I have inherited his volume. There is no doubt that I am in the room when I laugh. Like his, mine is wall-to-wall laughter. It was infectious. Our knees buckled, our eyes watered, and we almost wet our pants. His laugh carried the good stuff.

Everyone says that laughter is the best medicine.  That’s because laughter — real deep down jiggle your insides healing laughter — is synonymous with love. Right?

Love.

Exactly. Real laughter comes with love.

There are all kinds of laughter that have nothing to do with love. Or happiness. There’s the forced laughter we hear in business meetings when folks are pretending they want to know who you are, but mainly they want something from you. Then, there’s the dry, scratchy laughter of contempt. (Just think of childhood bullies.) You know these folks when you meet them; there is no mirth in their eyes; no “there” there.

Real laughter rides the wind like bird songs, cricket cries, or the whoosh of waves lapping against the side of a houseboat. Real laughter plays the soul like harp strings. Real laughter melts the heart like warm cherry pie melts ice cream.

Real laughter is passed along like family recipes. When you come from laughter, you give laughter. I hear my father’s laugh in my brothers, my sister, and my nieces (who never met their granddaddy). It’s a rich and sanity saving heritage.

Forget LOL. I think I’ll start signing messages LLOL.  Love laughs out loud.

On: Strength

Strength

It was never intended for these pages to trickle into a diary.  You know—”today I did this, yesterday I did that.”  But it’s Spring.  I’ve been through autumn and winter, and I realize that for six months I’ve been living a life I never saw coming.  So, I find myself using these pages to write about a world that I would rather ignore because it helps me keep some semblance of sanity.  The words I’ve written have felt, a little too often, dark even when the words themselves are bright.

But I wanna track back to the beginning, to the color, vision, and power of language. So in a hopscotch fashion, I have leaped around to land on: Strength.

Endurance, vigor, physical power, potency.  How to define the ability to withstand and overcome the curve balls of life?  I am not the only one with diary-producing issues.  At least three people I know have lost parents; another had a serious operation; and yet, another has been trying to heal in the wake of separation from a 35-year-old marriage.

What, I ask my God, do you want us to learn?  Could it be how to maintain equanimity under pressure? Perhaps it’s a subtle directive to keep our hearts open in spite of the ignoramuses we encounter (see?). Perhaps it’s as simple as a desire and need to find love within our courage.

I asked a minister if his faith was ever tested.

“Yes.  Every day.”

“What do you do?”

No, I’m not a skeptic.  I just want to hear what I know is the answer.

“Pray without ceasing.”

That’s all I wanted to hear.

I’ve been depending on the view from my window to help fill me up.  In the morning, I watch the clouds gather. They are snuggled together like sheep, or like cotton balls with soft, tangerine colored edges.  Some days they are scary in their weighted grayness.  And some days, the sky has no clouds at all.  I admit it: those are great days.

In the wee morning hours, say one ‘o clock, before clouds take visible form in the black-but-really-deep-blue sky, I watch the Moon through the same windows where the clouds will soon be. The Moon, in her guardianship of millenia of human genius and ignorance, is a tremendous comfort.

I willingly relinquish control to the sky, to the stars, to the deep blue infinity. In doing so, I somehow feel stronger.  The time I spend trying to control what I cannot control is like fighting an undertow.

We cannot control the death of parents, and even though we try our best, we cannot control the destiny of our bodies.  In spite of all the efforts we put into commitment, sometimes our partners will not be committed.

And so, I am taught to admit that great strength lies in surrender.  There’s something zen about that, but I don’t really know what it is.

Yet.

On — Needs?

At first I was just pissed. I’ve been struggling with this dis-ease for a long time, trying to accept its presence; wanting to surrender to letting others help me. But, alas: people cannot give what they do not have. But the tape plays on: Insist on getting your needs met.

It brings up old shit. As a child, the adults I needed to care for me were not able to meet some critical needs, so as a young singer, I constantly performed this song:

There’s a someone I’m longing to see…  Oh how I need someone to watch over me.

But as I was longing, I was also resisting.  I had received the injunction to take care of myself. For years I’ve tried.  But, surrendering to others is not the way I roll, although deep down inside there was always a prayer for that experience.

Well, things change. The body has its own agenda. Surrender to others sometimes, whether we like it or not, is the answer. Lectures and prodding from friends, a little deep reflection, and the reality that I cannot care for myself brought surrender.  Friends have come forward in amazing ways. And still, I need more support to manage daily life. How disappointing that it costs money and that it’s in a rehab hospital. And therein is the rub. For many of the people in these institutions, meeting needs is not the goal; having a steady job is the focus.

Since September, the pain and impaired mobility caused by peripheral nerve damage has taken over my days and nights.  In the morning and the evening, tingling  and burning in the hands and feet, heavy legs, and a tight torso frighten me.  On February 2nd, I went to the hospital for my second in a series of IVIG treatments. For a month and a half, I’ve been cared for by nursing assistants who neither know anything about my condition nor care to learn. The situation highlights a toxic belief that I’ve carried all my life: I cannot get my needs met.

It is Easter morning, and life in a rehab hospital is getting old. There are physical successes and setbacks, emotional frustration, and anger at the clueless. They are getting their needs met; they get a paycheck.

“Yours is an invisible disease; they don’t see where your pain exists and so they don’t think that it’s real.”

Oh, brother.

This is majorly frustrating because nursing assistants only understand what they see. They do what they’re told to do: make sure patients are fed, bathed, and their vital signs checked. They are not trained nor do they care to respond to the invisible. Things like Guillain-Barré syndrome or chronic inflammatory demyelinating polyneuropathy are inconveniences; conditions where they have to think about and take a step towards understanding so that they can help people heal.  The tape blares in my head: Will I ever get my needs met?

I’ve expelled a lot of anger and resentful about not getting my needs met. And this saga seems to be a continuation of the negative belief. How do I change the story? A nursing supervisor advised, after I had an encounter with the nursing assistant who was fairly brusque and impatient, to educate her, to ask her if she knew anything about peripheral nerve damage or Guillain-Barre. I did that and, not surprisingly, the answer was — surprisingly — a humble “no.” My frustration, along with her judgment, dissolved for the moment, and in a perverse kind of way we both got our needs met.

People cannot give what they do not have.  Have I said this before?  I know that I’ve heard it.  People cannot give what they do not have, and I cannot get what I never got in the past from those in my present. In my push to be loved and cared for in this current situation, I’m faced with the reality: I am getting my needs met.  

My friends are here for me, and I have to meet my needs by finding a facility where the staff completely understands my condition. I can change the message and start things anew. After all, it Easter, and with rebirth,  I always get my needs met.

On eggs and the fragility of the human heart

I was running out of patience.

“May I have potato salad?” No.

“Boiled egg?” No.

“Pizza for heaven’s sake?”

How the hell did my name get on the cardiac diet list? Perhaps it was the high blood pressure.  But when it came to anything that tasted good, boy, I got nothin’. It’s amazing how contrary a person can be when told “no” about food.

“Where’s the dietician? I want to speak to the nutritionist!”

Was it too much to ask? An omelette with cheese, mushrooms, and spinach? Maybe some French toast? It’s been a long haul from veganism to dairy and, now that I’ve made the trek, I’m out of patience with egg substitutes, salt-free steamed veggies, and bland breakfast cereals.

But this is not really about the eggs. It’s about feeling that I’ve lost control to some of life’s most basic decisions: Pancakes or frittata and toast? Then there was this reflection (I know, I know…) that the egg represents the strength and tenderness of the human spirit.

I started thinking about how the fragile yolk is the source of necessary nutrients; the shell, protection.  Then I reflected on the heart as the source of spiritual nutrients; the awareness of the heart, its shell of protection.

I’m not smart enough to come up with these ideas. There are sages with wisdom that I do not possess. I keep trying.

When I was about 11, I watched my paternal grandfather kill a snake that had gotten into the chicken coop. For that unfortunate reptile, the meal was so not worth the effort. As granddaddy beat it with a heavy stick and held its body in the air for us to see, I was stupefied to see the sun-yellow yolk, mixed with bits of shell and egg white, drip from the mouth of the predator.

Recently I received an email from someone who revealed that something I said had hurt her deeply. Added to that was her discomfort with the fact that I did not remember the incident. Hearing her story was like watching the yolk fall from the mouth of the snake. I had moved away from one of life’s most important choices:  be aware or unaware.

I felt bad about it. It’s a thin wire we walk; learning to acknowledge personal power and largeness of spirit, while ensuring that every interaction is respectful and empathetic.

Keep the snake out of the chicken coop.  Keep the eggs on the plate.