When the doctor told me I needed to learn to reinvent myself, I chuckled under my breath and mumbled something sarcastic. I can’t remember exactly what I said, but it was disparaging and ill-mannered. Afterward, there was a moment of silence between us and our eyes locked. I was scared and he knew it.
He smiled at me with compassion, jotted down a phone number on his prescription pad and slid it across the table. It was the number to a well-respected shrink in the area; someone who specialized in physically debilitating illnesses. “Here,” he said. “Just in case you change your mind.”
As I struggled to stand up, I aggressively snatched the piece of paper off the table, crumbled it up and threw it inside my purse. Actually, my reflex was to throw it at him, but just because my body was failing me, didn’t mean my manners would, too. Frankly, I just didn’t believe that I had some strange neurological disorder (that I had never heard of,) sparked by some random virus that the doctors couldn’t even place. It all sounded a bit absurd to me; I mean, who does that happen to?
“Whatever,” I thought to myself. I’d show them, the lot of them: my doctors, my body, even myself. I wasn’t some sick person. I wasn’t going to let that happen (even though my nerves were fully demyelinating and I was in severe, sometimes excruciating pain. ) As I busied myself with positive, yet slightly pissed-off thoughts, I frantically drove home from my neurology appointment with one thing on my mind: working-out.
Mind you, I used to work-out to relieve stress, so it made perfect sense to me to go sweat it out. You know, release my frustrations. Plus, I thought making myself stronger was imperative at that point to beat whatever it was in God’s name that I had. So, I hobbled to the beach path behind my apartment building and started to jog, slowly.
The pain was agonizing. It was so intense that I started sweating profusely and tears ran uncontrollably down my face. I wouldn’t stop running, though. I wouldn’t give up. I would NOT let a life-threatening nerve disorder stop me from living my big, beautiful, bustling life.
I don’t remember what happened next, so I’ll give you the cliff notes, based on eye-witness accounts. After I fainted, I fell quiet hard on my face. The ambulance was called and I was rushed to the hospital, where I stayed for a few days. The doctors still weren’t seeing eye-to-eye on a diagnosis. They debated between Transverse Myelitis or Guillain-Barre’ Syndrome that had developed into Chronic Inflammatory Demyelinating Polyneuropathy. Okay, maybe debated is being generous. They actually said: “It’s like flipping a coin, whatever it lands on, well, that’s probably what you have.”
When I finally woke up from my work-out gone wrong, it was like a scene out of the movie, “Terms of Endearment,” but instead of being the sweet dying daughter, I was the crazy mother (the role Shirley MacLaine made famous and would later go onto win an Oscar for at the 1983 Academy Awards.) I WAS running (well, it was more like pushing myself down the hospital walls) because I could barely walk and I was screaming for help, screaming for someone to relieve my pain. Looking back at it now, it was nothing short of heartbreaking. I was incredibly vulnerable, physically frail and desperately seeking answers. No one had them.
The couch was beige and inviting. I sat with my back propped-up against a few overly-stuffed and probably overly-priced throw pillows as Dr. Nancy (the shrink my neurologist had referred me to) peppered me with questions to find out how I was coping with my illness. I answered the best I could, but inevitably, my eyes welled-up with tears and I started to cry.
The crying quickly turned into weeping. My body shook with pain, fear and grief (for the person I used to be.) She walked over to the couch, grabbed me and cradled me in her arms. I clung to her like a lost, hysterical child. I was at death’s door, or somewhere close to it and Dr. Nancy was the person that would help me come to terms with opening it.
Over the next few months, Dr. Nancy and I laughed, cried, and figured out how I could make peace with my friends, family and most importantly, with myself. For the record, she always urged along my survival and unequivocally believed in my eventual return to health. Dr. Nancy breathed new hope into my life and tenacity into my fight. And so it would come to pass that my big, beautiful, bustling life would turn into something incredibly real, irrevocably raw and strangely enough, peaceful. I was living proof that Tim McGraw’s country song “Live Like You Were Dying,” was true, because that’s exactly what I was doing.
It was a sparkling blue, sunny day when the flowers arrived. I had arranged, per Dr. Nancy’s request, to have tulips, roses and hydrangeas delivered to my apartment. I was determined to “re-invent myself.” I needed to give meaning, purpose and direction to the time I had left (however long that was.) I had always loved flowers and dreamed that in a perfect world, I would arrange them for a living. Perhaps, own my own quaint, Shabby Chic flower shop, like in the movie “Bed of Roses,” starring Christian Slater and Mary Stuart Masterson. I guess it was a pipe dream of sorts.
Unfortunately, I had grown so ill, that the simplest task, like showering or using the bathroom had become a challenge. I wasn’t sure I could tackle arranging flowers, but I wanted to try. My normal life had become all but a distant memory and I needed to find solace with time, that I had found so much of, as of late (because what I had busied myself with before had become irrelevant.) Below is an actual excerpt from my diary:
January 16th, 2011
“If I’m well enough (not feeling too sick,) every Sunday I arrange a beautiful bouquet of fresh flowers. Each week, I have a surprise assortment of blossoms delivered to my apartment in all shapes, colors and sizes. First, I’ll pick the perfect vase, mix and match the colors, clip the stems and arrange them with whimsy. When I’m finished, I just sit and stare at my colorful creation. Life has truly become about the simple pleasures.
It’s amazing, really. Not the fact that I’m arranging flowers, but that I’m actually enjoying it. I would never have done such a frivolous activity before I was sick. I used to spend every waking, breathing moment to better myself, physically and materialistically. It’s shallow to admit, but if I can’t be honest with myself at this point, death will not become me.
I used to spend a lot of time preening my hair, nails and skin or buying clothes, shoes and purses. I’d exercise a lot, too. I’d run, do pilates, run some more, lift-weights, run again, stretch, run. I mean, what in God’s name was I running from? Myself, perhaps? And although I was healthy (back then,) was I really living a good, decent, full life? I wasn’t feeding my soul, my spirit or my authentic self. I realize now that without a doubt, I was indeed running, literally and figuratively, so to speak. The only problem was, I was completely running on empty.
When I’m arranging flowers, I notice that each has its own personality: some are delicate, strong, soft, velvety, subtly sweet or divinely intoxicating and despite being so still, they’re palpably alive. A flower is simply astounding. Mind you, I used to describe a pair of Prada shoes that way. Don’t get me wrong, I’m not changing the world with a true awakening I am, however, reinventing myself. Doctors orders.”
During my arranging days, as I so lovingly called them, I, too, became like a flower. I blossomed in the most unexpected ways. I grew more patient, loving and caring for the important things in life. I weeded out the bad and embraced the good. I treated each day of my life as if it were a delicate petal. I grew taller in the sun and wilted in the harsh shadows of negativity.
Other unexpected things happened, too. I met a special person that helped me get into the Mayo Clinic. It was there that I found answers, because it was there that I found doctors that would not stop until they found them. Which led me to a diagnosis (a classic, almost text book case of GBS/CIDP). That diagnosis led me to Aventura neurologist Dr. Jeffrey Gelblum (a neuroscientist.)
The first time I met Dr G (I nickname all of my doctors) he went through my entire medical history right in front of me (and it was longer than the Old Testament.) When he was done, he looked at me and said something I’ll never forget: “I’m sorry.” He actually expressed true compassion and sorrow for my pain and suffering. I cried. Dr. G also told me that I was too young to die and that he would make me BETTER.
I left his office that day with a new lease on life, literally. I drove to Target and limped my way to the card section. I scoured each heartfelt message until I found the right one to gift him. I settled for something simple. The card was beige with pretty gold flowers embossed on it. It said…’Thank You.’ I went home and immediately wrote him a heartfelt note, thanking him for saving my life, before he had even tried. Then I took a nap because, well, I was living a life where it was important to stop and smell the roses.
Dr. G. did indeed make me better and I did indeed keep arranging flowers. In fact, the act itself is an extension of my willingness to relearn how to live my life in the most healing and nurturing way possible. The flowers are also a reminder to feed myself, not just emotionally and physically, but spiritually, too.
I smile wholeheartedly when I see flowers speckling the landscape of what is called a “fashionable life” (like the dress pictured in the blog by Clover Canyon.) And while a gorgeous, garden extravaganza on any garment is a clothing trend now, for me “Flower Power (a true awakening)” is a way of life.
I haven’t given Dr. G his card yet. I guess I’ve been waiting for the right ‘time’ if you will, because now I have a lot of it and that’s why I can think about other things, like: one can never go wrong with beautiful, blossoming buds on any part of their Spring and Summer wardrobe and that’s why “Flower Power (a true awakening)” will always be one of my favorite things.
Dress by Clover Canyon available at www.kokopalenki.com
Earrings & necklace provided by Koko & Palenki
Shoes by Valentino
Sparkling Butterfly Ring – a gift from a friend
Have a fashionable idea? Contact me.
photography by tod p/t4twophotography
Hair & Make-up by Odette Hernandez
Editor: Matthew Auerbach