“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.

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.

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 2^nd, 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.

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.

First resolution: hold on to the magic in life.

After a horrendous summer that became a worse fall, I need an abracadabra on my view of resolutions. Gone are the weight loss aspirations; the obsession with changing my diet. I’m grateful for having an appetite again. Into the cosmic trash goes a daily commute made bearable by books and my iPod. A pox on those sorry promises to keep my apartment showroom spotless–anyone who knows me knows that promise could never be kept.

Second resolution: Make resolutions easy. Make ‘em realistic. Make ‘em something I really care about, that way they’ll stick.

I was thrilled on New Year’s Day to find that I had taken yet another step on my path to healing. I cooked dinner. My hands worked. Vegetarian Hoppin’ John. Cornbread. Greens. Rice. But there’s something I need to remember.

Third resolution: I’m still healing. Sitting is a good way to chop vegetables.

There are some things I know I’ll be doing for the rest of my life. Eating. Cooking. Singing. Laughing. Loving.

Fourth resolution:  These are the things I must write about.

Over the past few months, some people have dropped from my world and others have become closer. It’s so nourishing to know who your friends are. Like a warm pudding. Comforting. Sweet. Sticks to the ribs.

Fifth resolution: Being grounded about how I spend my time and who I spend time with.

Easy enough. Simple. Like magic.

May your resolutions be nourishing, easy, and real.