Courage, Caring, Laughter, Love

Eight years ago today, an essay I wrote was published in the Charleston newspaper. It's not that I remembered that specifically, but thanks to the wonders of social media, I received a reminder this morning and a link to the essay. Only, when I followed the link, the article was gone. Apparently, the Charleston Post Courier thought it too hard, in this digital age, to maintain all those digital files, so retired some, including this particular article, about my mother. Luckily, I still have a copy of it, and dug it up to re-read. Their title was Memories of a Life Still Lived.

Courage, Caring, Laughter, Love: A Remarkable Journey

Amy Nadel Romanczuk

I am a stowaway on a remarkable journey. The main traveller is my mother, Ruthe Nadel, born 87 years ago on New York's East Side. In her four score and seven years, she has done both remarkable and ordinary things. But she did them all with true joy and immersed in love for the world. Whether it was being teaching assistant to Abraham Maslow (yep, the fellow of the Hierarchy of Needs theory in Psych 101) or discussing Jane Austen, she has a style all her own. She’s loved one man, raised 3 children (10 dogs, 5 birds, a few dozen guinea pigs and a assorted other critters), adored her grandchildren and great-grands. She has won hearts around the world with her spirit, courage and humor. She did all this while almost completely deaf from young adulthood, and while living with Multiple Sclerosis for nearly 50 years. For the past year, breast cancer has also been in the health mix.

Our "Bumma" (the nickname given to her by our son) sailed through initial treatment and surgery under the wonderful care of MUSC’s Breast Cancer team. In March, Bumma had a sudden, vicious recurrence. Because of the extensive scope of the disease, she opted for palliative treatment. She told me she'd had a good life, but that she had only one regret: “When the inevitable comes, I am sorry I will not be around to read the letters people send you about me.”

I looked at this tiny woman with the enormous heart, and thought “I can do that for you. And you don't have to be gone for me to do it. It can happen now.” With the help of my brothers, we have reached out to people she has known over her lifetime, inviting them to send a thought, wish, memory or whatever, to her now, before she's gone from us. What started out as a whim has turned into a life affirming, joyful celebration for and of our mother.

Emails started coming in immediately, followed by cards and letters. Friends worldwide sent care packages, stuffed animals, handmade gifts, photographs, drawings, poems, musical recordings. She received a beautiful comfort afghan from the nonprofit HeartMade Blessings. There is even a site online where a candle can be lit for her. As people shared their hearts with her, she shared their responses with us.

Our childhood friends recalled coming to our house just to look at her, because she was both beautiful and she talked to them, never down to them. Or how she demonstrated making a french twist, then shook her hair down like the proverbial librarian throwing off her bun and glasses and letting her inner tigress loose.

She showed one child to do wheelies in his wheelchair by demonstrating in hers. A busy executive remembered she helped him learn to take time from his urgent work priorities to cherish the here and now. Jazz greats at the Stanford Jazz Workshop would tumble like puppies in their eagerness to be in her company. The image of her zipping around on her mobile scooter, orange flag waving on the back, is a memory for many.

She has a huge following of people online, especially at www.bookcrossing.com, a book-lover's website she joined at the young age of 82. Her candor and unique style are adored around the world. She is a sweetheart: strong willed, outspoken, loving and generous. A true “oner”.

Our family is a family of storytellers. We thought we knew our history pretty well, but have been astonished to find so many acts of kindness attributed to Bumma. This experience has opened avenues to explore and learn, new stories for the grandchildren to pass on to their children, someday, about a remarkable woman. Our days are extra poignant as we learn more about this woman we love through the lives she's touched. And it has meant an enormous amount to her, to see that she has indeed helped lives and made a difference in this world. She and I made a pact in March: we would face this with Courage, Caring, Laughter and Love. She's kept her part of the bargain. I’m trying but am sometimes blinded by bittersweet tears.

I encourage others to do this same project with your own loved one, should the opportunity arise. Help show the wonder of how they have made a difference on this planet. One need not be famous to be extraordinary. I have learned that, and so much more, from one little woman I am honored to have as my mother.

Ruthe Nadel,on the way back from first Radiation Therapy 2009

Amy Romanczuk is a retired pediatric nurse, active BookCrosser , blogger and pysanky artist here in Charleston, SC. She, her husband and son, have shared a home with their beloved Bumma for the past 20 years.

I've just fallen in love

You know how you read a book, enjoy the way the author presents the tale, and decide to keep an eye out for other books by that author? Well, yesterday, I stumbled upon one of those "other books". I began reading said book. It's proven to have, at least in these early pages, an unfolding story which I like, characters who interest me, and the promise of a premise which can provide what some folks call "a good read".

Then, this morning, over breakfast, I read this excerpt:

                                                      From The Atlas of Love, by Laurie Frankel

I have found another author who has touched my reader's soul, and clearly had visited my childhood bookself and bookshelf.

The world according to Mike

My friend Mike is amazing. I knew that before his diagnosis of pancreatic cancer, but since then, I'm upping that amazing a couple of amps. He and Olive, and Ricardo, their son, all have a special place in my heart for allowing those of us who love him to travel this journey with him. (If I have forgotten to say so, thank you.) My own inclination when health problems come up, is to curl up within myself and hide. (The two notable exceptions to this were my mother's battle with breast cancer, where I found myself her spokesperson to keep in touch with what she lovingly called her "fans", and my own experiences with latex allergy and the resultant pulmonary problems, which I've tried to use as a teaching tool to increase awareness about this problem.)

A few friends who have not made the leap from LiveJournal or Dreamwidth to Facebook have written me for news of Mike. Today, yet another friend wrote, and I ran an idea by Mike. I asked, simply, if he would mind my reposting some of his health updates when he makes them on FB. It would be a way to pass the information without taxing his energy, which is a precious commodity these days. I'm posting Mike's response, edited only to remove the name of the latest person to write me. I will do my best to remember to repost, from here on out, but if I forget, nudge me and I'll zip over to his FB wall, brush aside the cricket posts, travel links, Humanism/Atheist or Organized Religion objections, and find the latest update.

And without further adieu, heeeerrrreeee's Mike!

Hi Czukie!

Feel free to forward/repost any of my FB posts! I keep meaning to e-mail (redacted) directly, but I only have her e-mail address on my laptop, not iPad, and to use the laptop I have to trek upstairs. I know that sounds dumb, but sometimes these days my body moves slower than my brain and I am becoming an even worse procrastinator. Anyway, if you speak to (redacted) first, give her my love, also from Olive.

I'm determined to make another LJ post soon. A lot of people ask me how I am. I appreciate their concern but it's burdensome to reply to everyone individually. Basically my health has stayed the same since May, nothing to report. No news is good news! If there is something to say, I'll let people know. Neither I nor my doctors can predict the path of this illness - it may strike suddenly, it may not. I'm not going to waste a second wondering about it. I just want to have fun!

XXX

Mike

Sent from my iPad

But I want to close with a recent post that may go down as one of my most treasured quotes from a treasured friend. It sparked a wonderful dialogue on FaceBook, and maybe it will here, too. (I've blocked out Mike's last name, because I neglected to ask him if I can post it, and this is a public blog. )

Thanks, my friend. Keep on keepin' on.

#mikeshares

Bumma's Bounty: Dancing with the Stars (Originally posted June 30, 2011)

All month, I've been experiencing the generosity of my mother's spirit by sharing memories of her and some of her bits and bobs she left behind with others.  I've made donations in her memory to some of the causes she loved, and to some that remind me of her, that she didn't know about in her lifetime.  I've shared her story with a number of new friends, including someone beginning the final journey with her own mother.  Hearing of how bumma's friends and family showered her with love in her final days, (what I've labeled in in my mind as "The bumma Love project"), she's decided to try a version for her mother, and for herself, to help ease the sadness she is experiencing. This has given me happiness, as have the thank-you's that have come in from people Bumma's Bounty 2011 has touched.


Today, the last parcel I'm sending out of bumma's, for this year, was mailed.  It would have gone out sooner, but one thing I was looking for went missing.  I searched all over for it, but the gremlins seem to have stored it away for now.  Perhaps the recipient, as perfect as I thought, was not the real intended.  Perhaps it was for another reason -- that bumma wanted me to find something else instead. As I searched for this item, I found a necklace that Erico and Heather gave bumma for, I think, her 75th birthday.  It is a piece of pale turquoise, cradled in gold.  I'd forgotten all about it, and was blown away by the memories it evoked, seeing my mother wear it.  I slipped the chain over my head, and it nestled against my heart as I continued my search (unsuccessfully, I might add.)

Soon, it was time for me to head to my dance class.  I have to say that I've never considered myself a dancer.  I took some sort of dance with a formidable woman named Batya Heller  when I was 4 and 5.  She scared the living daylights out of me, and carried a stick she thumped on the floor to count out rhythms.  My main memory of her is that she proudly told us she even slept with her toes pointed.  I dreamed of pink tutus and toe shoes, and secretly covered the classy carrying case one of my classmates had for her ballet slippers.  What I got was Batya Heller and her stick.  As a little girl, I remember watching my mother practice hula in her room.  She swayed gracefully to the music, her hips and hands telling stories.  (I've written about that <a href="http://bookczuk.blogspot.com/2013/04/aloha-oe-originally-posted-july-04-2005.html">here</a>, previously.)  One of bumma's last requests to me was that I try something new, and be good to myself.  Last year, I decided that I would honor that promise by starting yoga, which bumma loved.  At the studio, I was introduced to <a href="http://nianow.com/">Nia</a>, which was a type of dance that I could gallump through and feel good.  Over the past year, I've seen how my body has responded to the freedom of movement it experienced through dance, so much so, that I find myself heading off to the studio 3 or 4 days a week to dance, and have even added belly dancing into the yoga/nia mix (wouldn't Bumma have <i>loved</i> that?!)

As the music started, today's dance began with some gentle arm movements and hip-swaying, reminiscent of hula.  Suddenly, the air around me was filled with my mother's scent.  It startled me so, that I almost began to weep.  I looked around, expecting to see her face.  But then I realized that the gold chain and pendant I wore must have carried a little remnant of her perfume.  As I danced, and my body heated up and moved, it was released.  I danced in the arms of my mother.  Bumma found a way, two years later, to send out her essence and embrace me. I danced with a star.

On Wellness

The Springtimes of my childhood were filled with forsythia and dogwoods, the soft velvet of pussy willows, the return of robins, hungry for worms after their their long flight north. The days were marked by the greening of the trees, and by daffodils, pushing their heads up from the thawing ground. Spring brought a cleansing, as homes around us cleaned and cleared in preparation for Pesach. Being ecumenical in the approach to life, my friends and I dyed eggs, while wondering where the Afikoman would be hidden, if we we would be the one to find it, and what our prize would be.

In the springtime of my fifth year, my mother took me downtown for a special girl's day, to buy a new dress to wear for the holidays. It was fabulous to have my mother all to myself, not having to share her with big brothers, father, dog, and whatever else could grab her attention. We were headed to Hecht's, waiting for the light to change to cross the street. There was a bus at the corner, loading passengers heading into DC.

Red light to green, and a flashing walk sign; look right, then left, then right again. I pulled on my mother's hand to cross the street.

"Not yet, Mamele, let both buses pull away from the curb. We don't want to step between them. The driver of the second might not see us."

I looked again. There was only one bus. What I was witnessing was one of the first manifestations of my mother's Multiple Sclerosis. It's called Diplopia, or double vision. The disease that would hound her heels, but never conquer her, had grabbed the brainstem, creating lesions, and causing problems for her cranial nerve.

Over the years, my mother's MS tried various ways to take over her life. But she was amazing. She charged forth, living her life fully and with flair. People used to say to her her how hard it must be to be sick. "I'm not sick. I'm one of the healthiest people around. I just happen to have MS".

Of course, the same knuckleheads would ask me if it was hard having a mother who was "crippled", because she used canes, or braces, or walkers, or wheelchairs to help keep herself mobile. What a ridiculous thing to ask! She was my mother; we rode the curves life threw us together. That was the life we knew. Any other type of life was not reality. I grew up with her coming to terms with what living with MS meant, but not being defined by it. I knew no other way. She was my mom, and she was terrific.

These thoughts recently came to mind in two conversations with an old friends, who found me online. For one, it was after a gap of close to 50 years, but she found articles that led her to me. She remembered the vision trouble my mother had in those early days of MS, back in Silver Spring. She said, when we reconnected by phone, "I know she was sick, and had such problems seeing, but there was always a twinkle, a sparkle in her eyes. Coming to your house was coming home. Like walking into your brain and feeling just right."

The other friend and I reunited via Facebook. He is  living with a life-altering disease. From what I can tell, he is facing it with courage, and reaching out to help others who suffer from severe neurological insults. In my mother's last days, when she was ravaged by the cancer that hastened her demise, we made a pact to face life with "courage, caring, laughter and love." It was only after she passed that I realized that was how she faced all her days.

Apparently, courage, caring, laughter, and love are a legacy she passed on to her offspring. I see it in my brother in great abundance; it was a way of life, too, for my elder brother before his death. And with my wonky health challenges, I do my best not to be defined by the condition. I'm not always successful, but even if I have to curtail an activity, or adjust to accommodate and stay safe, I try to keep going. It's not that I'm strong, or special, or smart, or wise, or any of that crap. I'm Ruthe's kid, and I'm living life as she taught me to do. I try to look twice before I cross the street, to not step between buses, and to walk forward, with a twinkle in my eye.

I've looked at clouds from both sides now

Driving home from choir and church (and my peaceful Sunday strolls around downtown Charleston) yesterday, my reverie was broken by a cloud formation. (Luckily Javaczuk was driving, so no cars or fishermen on the bridge were injured by my contemplative state or awakening from it.) I've always wanted to see rabbits, or puppies, or even dragons in the clouds.  I guess once a urology nurse, always a urology nurse, because the cloud I saw clearly only looked like one thing to me, and to everyone that I have showed the picture.

And for my medical friends, when the wind began to blow from the east, it developed hypospadias (which spell check wants to change to hypochondriacs, but I won't let it.)

I've heard it said that nature makes no mistakes, but clearly sometimes there's junk in the sky.