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reconfort: a farewell to a reader with ALS, or Lou Gehrig's disease

Melanie Olsen
Bon voyage, chère Mélo. If you only knew how much you meant to me--je te garderai dans mon coeur pour toujours.

Our dear friend and fellow Francophile, Mélanie, passed away September 23rd after surviving 18 years with the neurodegenerative disease known as ALS. Melanie will be honored in a ceremony on Monday. In case, like me, you struggle to find words to comfort a family in mourning here below is some encouragement--follow your heart.

le réconfort (ray-cohn-for)

    : comfort, reassurance

Audio File: Listen to Jean-Marc Download MP3 or Wav file

L’étiquette funéraire est simple; écoutez votre coeur. Observez ceux et celles laissés dans le deuil et offrez votre soutien et réconfort avec des paroles, des mots et des gestes du cœur pour témoigner de votre amour, respect ou sympathie. Funeral etiquette is simple: listen to your heart. Observe those who are mourning and offer support and comfort with words, words and heartfelt gestures to show your love, respect, and sympathy.  -from Etiquette Julie, in Quoi dire ou faire en temps de deuil "What to do or Say in time of Mourning"

A DAY IN A FRENCH LIFE... by Kristin Espinasse

Yesterday morning I woke up with fresh hope. It may have been a result of the strange and cathartic moment from the day before, when my husband surprised me on our anniversary. The outpouring of tears, and the intense emotion accompanying it, had felt, mysteriously, like mourning--and yet it was one of the happiest moments of our married life.

The release left me with a clear and positive mind as I sat down to another day of work as a self-appointed journalist. I've never managed to land a gig at the New York Times and publishing houses aren't exactly beating down my door, but one never knows when years of practice will pay off again!

The thought suddenly hit me: maybe today good news will come my way? In the eleven years since fueling this online journal, I've received a handful of life-changing propositions in response to it. There was the day when I clicked open my inbox and discovered an email from Simon and Schuster (a publishing contract followed!), then the chance to speak at the historical Parisian bookshop Shakespeare and Company, and recently, I was invited to join the editorial team at France Today magazine: they offered me the backpage column "Le Dernier Mot"! 

And who knew what could come next, when, against all doubts and the condemning voices in your head, you continued to follow your dreams? But first things first--no matter the hurdles overcome, you've gotta continue to do the work. And so, with a rare peace, I settled into another session of writing. At the end of the day, I checked my inbox. And there I discovered one of those life-changing, heart-thumping letters--only not the kind I had hoped for.

The email's subject line read "A farewell from Melanie"....

Mélanie! No......... I sat there with my hand clamped over my mouth. The news was so unexpected, and yet.... she had already beaten the odds by 16 years--living almost two decades with a debilitating disease.

*    *    *

I met Melanie in 2008 through my online blog, French Word-A-Day. Her first note to me came after a serendipitous coincidence (were the previous two words an oxymoron? Melanie would know--she was so curious and had a love of language! In fact, she had been looking up the word "insouciance" when--poof!--my mot-du-jour newsletter appeared in her inbox). The word of the day was souci

Dear Kristin, I have been intending for quite some time to tell you how much I enjoy receiving your email.  Many things you’ve written have struck a common cord with me, but when I saw that you had posted the word souci, I knew I could put it off no longer.

Melanie added, almost as a post note, a modest word about herself:

Thank you for all you do!  I love escaping to Provence through your adventures. I now have ALS or Motor Neuron Disease so typing takes time and energy but one day soon I hope to send you a message about my experience in Provence and other connections I have had to what you have written

I had goosebumps reading Melanie's letter and immediately looked up ALS, learning the heartbreaking reality of a horrible illness also known as Lou Gehrig's disease. Most people die within two years of coming down with ALS, or amyotrophic lateral sclerosis.

There began a tender correspondence. One hundred and two precious exchanges (including the comments Melanie left at my blog). Piecing together her letters and friending Melanie on Facebook, I learned a little, each time, about this beautiful, athletic, and funloving character who one day, at the age of 30, had the wind knocked right out of her sails.

In 1995 on returning from France--where she had passed the most exhilarating and inspiring time of her life--Melanie was diagnosed with motor neuron disease.

It was difficult to believe, even for the friends she would later meet. Poring over her Facebook photos, taken before she learned the news, I witnessed her joy via the scenes of her European adventure: there was Melanie, kicking up her boots on the dance floor, and there she was in Cannes, all dolled up (I wrote to her asking if she modeled, but she quickly downplayed her God-given beauty: "You are too kind!" she wrote, immediately changing the subject).

Melanie in Cannes, France
If I were a talent scout, I'd have snapped up this beauty, illico -- in no time at all!

There were photos of Melanie hiking in Porquerolles, clinking champagne flutes in Venice, and--was that a yacht she was on? I was fascinated by her adventures, lived with verve and a very sweet heart....

Melanie in Monte Carlo
Melanie told me that she loved hearts--collected them (notice the belt), but she admitted that her illness prevented her from sharing her life with someone. I pictured her in her wheel chair, years after this photo was taken. At the time she had no idea that on her return she would be diagnosed with an incurable disease. But her idealism, which she hinted at in one of her letters, had her beating the odds. More than the 2 years that ALS patients are given, Melanie lived 18 years with ALS.

As I got to know Melanie through her photos and brief notes, I could not help but imagine that once upon a time--with a Eurail pass and backpacks on our backs--we would have made wonderful complices, or partners in crime! She'd be the daring one, and I'd gladly tag along--sharing her zest for life, my own world brightened by her shining light.

"I think we have a lot in common," Melanie said one day, responding to one of my blog stories. What a compliment! The validation that we would have indeed been giggly complices in France--where we would have pinched ourselves again and again, unbelieving of our lucky stars that have sent us there, delighted me.

PORQUEROLLES France, Mehari car, Kristin (c) french-word-a-day.com
Moi--Kristin. Melanie's would-be accomplice--only pretending to be as adventurous as she!

 But such correspondence--indeed, such dreams--were limited. The truth was, owing to an illness that robbed her of her strength to eat or even type, Melanie grew weaker by the day. She had, so far, beat the odds--having suffered 16-years from the disease, though she never complained but remained a smiling inspiration to all who knew her. Yet I sensed moments when her bravery waned. Melanie once responded to a post I wrote, "Brebis", about a lonely shepherd. The last lines of the story moved her:

...Little did the berger know—and little do we all know—that out there, somewhere, someone is trying to comfort us without our even knowing....

"Your last thought was so touching," wrote Melanie, in the comments section of my blog. She went on to admit, "It warms my heart to think that it is so."

I, too, find comfort in the thought that out there, somewhere, someone is trying to comfort us, without our even knowing. And those lines, intended for my brave friend, were the closest I ever came to telling Melanie how much I thought of her and her bravery.

Around 2011, Melanie could no longer swallow. One day, in 2012, she wrote in, responding to this post on GMOs, encouraging me to continue to eat healthfully--no genetically modified foods! Melanie then shared with me her fondness for cuisine and how she had loved living in Chicago and DC, "both great cities for culinary diversity." She went on to say that in the past two years, because of her condition, she could no longer eat whole foods. Melanie had gracefully accepted yet another new fate: Ensure.

And yet, despite the liquid nourishment that she now received, she continued to enjoy reading about food--even her inner foodie (I loved it when she called herself this--a foodie!) could not be brought down by a heartless disease. She would have, with sincerity, wished all gourmands bon appetit! And Melanie's message was clear: we must all continue to enjoy life's bounty.

In our 5 year virtual friendship, Melanie encouraged me to continue to write freely and with an open heart and, little did she know, she carried me through my bout with skin cancer.

"Bon courage," she wrote, after a particularly invasive operation on my forehead. But how could I be anything but grateful, compared to my friend, who probably could not even speak (I never had the chance to hear her voice). Melanie would have traded places with me in an instant, wearing my dreaded scar like a rock star!  (On second thought, Melanie would not have traded places with anybody, but she bravely endured her cross.)

As I sat there with my hand cupped over my mouth, reading the farewell message sent from Melanie's family and remembering our delicate friendship (I never managed to tell Melanie just how much I loved her. I never did dare say Please, tell me all of your fears--lean on me! No, I was too afraid of somehow putting my foot in my mouth. I kept thinking my words might come off as pitying. So we wrote about other things, including coincidence--something that fascinated Melanie.

Coincidence! Yes!.... I remembered back to my cathartic moment at the lunch table, when my outpouring of tears felt strangely like mourning. And the heaving that accompanied them... and the bittersweat sadness that my happiness felt like... 

Jean-Marc! I said. (My husband sat beside me as I learned the news of Melanie.) "Jean-Marc! Remember when we were sitting at the table, just before I began to cry... just moments before I felt this sharp tug in my left hand." I looked at my palm, there, beside my thumb--where an insistant pinching caught all of my attention....  Pinch, pinch pinch. Pinch, pinch, pinch! I had thought it was a muscle spasm, but, looking down at my hand, I saw nothing...

But, at that very moment, before even knowing she had passed away, I thought of Melanie

*    *    *

I can see us now, together in France, me and my would-be complice. France, the only other place besides Heaven, that we'd rather be. The only place that we'd once again pinch ourselves on arriving. Can you believe it? Pinch, pinch, pinch--I'm here! 

I look down at my hand, amazed. I "heard" you, Mélanie! I heard you! I'm shaking now, those tears are back, rolling down my face drowning my keyboard. I believe. I believe. Bless your heart, thank you, Melanie--I believe!

*    *    * 

One of my favorite pictures of Melanie. Thank you Wendy, Melanie's sister, for permission to post these photos. Our hearts go out to Melanie's dear family.

 To comment, please click here.

Walk to defeat ALS
- each September Melanie encouraged friends and family to support the ongoing search for a cure for Amyotrophic lateral sclerosis (ALS). Her last wish was that in lieu of flowers at her memorial, donations be made to a cause she fought for with grace and determination. The week before she died I received this last message from Mélo in my inbox.

It must be September because I am sending out my letter for the Walk to Defeat ALS. The ALS Association funds vital research for possible treatments and a cure. The money raised also provides for patient services like assistive technology, guidance from an amazing staff, and equipment loan closet which have been so helpful to me all along from the time I was diagnosed to now, 18 years later.  Here are some numbers: Approximately 5,600 people in the U.S. are diagnosed with ALS each year. It is estimated that as many as 30,000 Americans may have the disease at any given time. Most patients survive only 2-5 years.   Please make a donation to help support all that the ALS Association does. Thank you so very much!!!

Melanie once wrote to me, pointing out another thing we had in common: the love of the famous prayer by St. Francis of Assisi. 

"Most mornings, as I lay in bed waiting for my help," she shared, "I say the prayer by Saint Francis of Assisi. I was thrilled when you posted it in French and immediately memorized it and now recite it en francais."

This is for you, chère Mélo:

St. Francis of Assisi's Prayer
Audio File: (Hear 16-year-old, Jackie, recite the poem below in French: Download MP3 Prayer-st-francis or Download Wav file

Seigneur, faites de moi un instrument de votre paix.
Là où il y a de la haine, que je mette l'amour.
Là où il y a l'offense, que je mette le pardon.
Là où il y a la discorde, que je mette l'union.
Là où il y a l'erreur, que je mette la vérité.
Là où il y a le doute, que je mette la foi.
Là où il y a le désespoir, que je mette l'espérance.
Là où il y a les ténèbres, que je mette votre lumière.
Là où il y a la tristesse, que je mette la joie.

Ô Maître, que je ne cherche pas tant à être consolé qu'à consoler, à être compris qu'à comprendre, à être aimé qu'à aimer, car c'est en donnant qu'on reçoit, c'est en s'oubliant qu'on trouve, c'est en pardonnant qu'on est pardonné, c'est en mourant qu'on ressuscite à l'éternelle vie.

                              *     *     *
  Lord, make me an instrument of Thy peace;
  Where there is hatred, let me sow love;
  Where there is injury, let me sow pardon;
  Where there is discord, let me sow harmony;
  Where there is error, let me sow truth;
  Where there is doubt, let me sow faith;
  Where there is despair, let me sow hope;
  Where there is darkness, let me sow light;
  And where there is sadness, let me sow joy.

O Divine Master, grant that I may not so much seek to be consoled as to console; to be understood, as to understand; to be loved, as to love; for it is in giving that we receive, it is in forgetting ourselves that we find, it is in pardoning that we are pardoned, and it is in dying that we are born to Eternal Life.

A Message from KristiFor twenty years now, support from readers like you has been an encouragement and a means to carve out a career in writing. If my work has touched you in any way, please consider a donation. Your gift keeps me going! Thank you very much.

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For more online reading: The Lost Gardens: A Story of Two Vineyards and a Sobriety