Category Archives: Writing from the heart

Thank you Melinda.

“I knew if I didn’t leave my bitterness and hatred behind I’d still be in prison” – – Nelson Mandela

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In California, roses bloom in  January. Not here. Not here. Not here.

I sit with my hot chocolate and look at the drifting snow and 18° weather. I’m reflecting on the past year, my diagnosis of CIDP, and asking God what that means for my future. It’s a mysterious future with hours of submersion in cultural waters carrying unexploded bombs of bitterness.

It’s like finding a World War II land mine. Family stories never stop. After years of begging the universe to make my family normal, or at least in my next life give me a normal family, it occurs to me that my family is normal. For what it’s worth, it’s me who lives outside the culture, enjoying the explosion of hidden fireworks that somehow foster the courage to love even more.  

My brother and his wife have separated, and the children are the ones who suffer. I see myself in my 13-year-old niece; a child with a passion for art—food and ice-skating and writing. I see a child struggling between the promise of her passions and the chill of being blown into the winds of abandonment. In this case, it’s her dad who is the chill. And I love them both. It’s not right. Prodded by cultural misinterpretations based on religious fear, dogma, and wrong understanding there is a sect of craziness that is trying to make this separation normal.

Millions of children grow up with single parents. And while I really believe that my family put the “dys” in dysfunction, my parents were never missing in action. The child in me wants to believe that for better or for worse, folks can stick it out. My grown up self knows that sometimes it’s easier to walk away although somewhere, somehow there must be dignity.

I am lucky. I’m old enough to witness the rescinding tide of fitting in. I am bolder, happier, and becoming, yes, whole. But for a child, fitting in is everything. A 13-year-old girl wants her family to be normal.

It is not an easy climb in the struggle against cultural forces that create and defend narrow definitions of family, womanhood, race, or work choices. We are moving uphill against cultural norms that sanctify secrecy and codify hiding our feelings. These norms threaten us with collapsing the walls of love and personal dignity.

Well.

According to me, freedom exists only in sandblasting away cultural definitions that keep us bitterly imprisoned from our own truth. It’s not easy to choose authenticity. But in the end, if we want to be whole, authenticity is what we must choose. I pray that this is the realization my niece comes to.

Now… about the words I chose for this post:

Self reflection. Years ago, during a meditation, I heard these words inside myself: “Can you embrace your own heart? Can you bow to your own self? Can you love the essence of your own being?” I was deeply moved because at the time I bowed to everyone but me. Those words have fueled my journey ever since. I discovered the truth about anger and bitterness: Anger is exhausting. The Buddha said, “Holding onto anger is like drinking poison and expecting the other person to die.”

I constantly reflect on my choices in life, and I am happy to say that there are very few choices I regret thus far. I embrace the consequences of my choices, and this gives me more energy to be true to myself. It replenishes courage.

Have my choices made me happy? Do I treat my friends and family with kindness, openhearted listening, and respect? Do I live with and give compassion? If so, I have learned something. If not, I have learned something.

Can I enjoy the moments of simplicity before me?

A beautiful tray of chicken and roasted vegetables drenched in a sauce of cloves, garlic, and spices sits before me. I made this meal with hands that vibrate with nerve pain. But I made it, and I am happy. Yum.

I cannot hold anger and happiness in my heart at the same time. I cannot be married to cultural definitions and explore the depths of my own soul. I have tried; it hurts.

Self dignity.  Do I love myself? Am I committed to maintaining a world that is fair, just, and kind? Can I be honest and kind in my speech? Disciplined in my eating? Am I grateful for my own presence in the gifts I offer to my world? Whatever I do, do I do it out of love? If so, I can maintain my dignity no matter the circumstance.

Happy New Year. May 2014 be filled with joyous reflection and abundant dignity.

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.

“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.