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An Invitation To Provence

So I wanted to take a little break today and tell you how lucky I am. That may seem odd coming from a girl with ALS. But I am. I’m super lucky. See, I have these friends. I have these friends who make ALS go away. You know how people say that you are lucky if you can count your good friends on one hand? Well surprisingly, I can count my friends on two hands! I received an email from one of them yesterday that I wanted to share with you.

The letter is from a dear friend named Susie inviting me to her beautiful house in Provence. I was going to give you a description of Susie but my words were not doing her justice so I just thought I would let her personality shine through in her letter and you all could see how wonderful she is.

 Dear Ellie,
Somebody once told me that it is important to tell the people we love that we love them. And, in a letter, this should be said at the beginning rather than at the end.

Of course I love you, how could I possibly not?
You are everything I love, you are sweet, funny and intelligent. You have amazingly good taste and you would be surprised to learn, how much inspiration I take from your fashion dos and don’ts.
You are sunny, keep up your smile in all kinds of situations and when you once really loose it, then it never takes long until it comes back to brighten your pretty face.
Oh yes, I have seen that you are in Provence already, seated on a pretty wicker chaise, sipping a pastis and nibbling some crispy toasted bread with tapenade spread on top.
Let’s make this happen! Let’s stop talking. We have been waiting too long already!
Could you PLEASE try to come to Provence around the 18t of July and you stay as long as you feel happy and don’t get tired having me and my little stories around you. 
Another beautiful idea would be that you come and see us here in Lugano, on the 2nd of August. We will then explore Como and the lake, go on a Riva boat ride, have lunch at the Villa d”Este, enjoy Sao’s homemade specialities, explore the Borromean islands with their breathtakingly beautiful gardens in Lago Maggiore.
After the 6th of August we’ll return to Provence, with the next window for us to inhale the lavender perfumed air together, to go to the market under the old sycamore trees, take a break for aperitif and newspaper or simply people watching, return home for lunch and laziness around the pool. The musee Granet is waiting for us, as well as little street concerts and the coral colored old town of Aix with its uncountable, refreshing fountains.
Jean Claude and I are already looking forward to having you with us very soon. Your room is waiting for you, we stop eating the fraises de bois ourselves to keep them for you, we start to observe the weather forecast to be sure it’ll be sweet and sunny, Jean Claude works on his apricot teint and I have gotten myself a new petrol eye liner ; )
I can’t wait to share with you sooo much in person, with all details, accompanied by laughter and moistened with some bubbly drinks. 
Love you more than cocktail hour at the Quisisana in Capri!
Tender hugs,

 How could I refuse an offer like that? Then, after I emailed her today and asked her if I could share her email with everyone she sent me this:

Oh Ellie!
You should see me know … blushed all over and with shiny eyes.
How can you possibly thank me? I love you and all I do is express what I feel for you.
You allow me to share in little stories, the beauty of the fairytale called life. We talk about all the interesting people we meet, people with different backgrounds and fascinating passions, we get hungry over the latest homemade dishes we have enjoyed, share our enthusiasm over organically grown vegetables from our own hatch, we love to look at chic Parisians, huge sophisticated flower bouquets and wide, aery hotel lobbies.
We love to laugh together, giggle over silly things, and when a dark cloud shows up on the blue sky above, we love to be together, tenderly united, as together we have the strength to blow it away!
You are my very dear friend. Feel free 
I love you more than the smell of the orange blossom in Sicily (we’ll go there on Sunday)
Many sweet hugs, also from Jean Claude

 See! How could I even possibly think about ALS after receiving emails like this is?
Note to other friends: Relax, darlings… I love you all equally.

Top 10 Things I Hate This Week.

Round rugs

The word “tablescape”

Men who wear tank tops

Chefs who get so close to the plate they are preparing

People who have “Tuscan villas” outside of Tuscany

Celebrity perfume

Adults who skateboard

Wharf themed restaurants

Hotel pools

Capped teeth

Yacht, non. Riva, oui.

I am not really a yacht type of girl. That’s probably due to my aversion towards plastic, fiberglass and tackiness. I am more of a classic wooden boat type of girl. Not that I own a boat or want to own a boat but if I’m forced to go on a boat I would prefer it to be wooden, s’il vous plaît.

However, I have to say that I am pretty sure I would enjoy Valentino’s boat. Also, Yolanda and David Foster invited me on a spectacular yacht a couple of summers ago that I loved. Why? Because inside, it was mostly woodpaneled. It was like a traveling house on water. But other than that, I am not into yachts.

I love the wooden boats. There’s something so classic, so stylish and so chic about them. I am not any expert but I just sort of know what I like. I think they are called Chris CraftHacker-Craft, FrauscherRiva or something like that.

I spent a wonderful afternoon on a Chris-Craft boat in St. Tropez with my father’s friend, his wife and their friend the actor, Seymour Cassel. Remember him? We packed a wonderful picnic lunch and drank rosé wine. This was very exciting for me because here I was drinking alcohol at age 19 legally! We anchored the boat in front of Brigitte Bardot’s house. How’s that for a table with a view!

Do you think that I have exhausted Provence/south of France/French Riviera/Cote d’azure? I’m not bored with it yet so I’m going to keep going. Sorry.

 A tout á l’heure!

Is it any better in Heaven, my friend Ford, than you found it in Provence? — William Carlos Williams to Ford Madox Ford in Heaven.

I don’t think you’re allowed to live in Provence unless you have a pair of Anduze pots at your front door. I have two in storage so I’m good to go. My mother and I (and of course we dragged poor Gracie along) to the Anduze factory in the south of France. We wanted to have the pots for our antique store, Circa. We picked out two big beautiful green pots and asked to have them shipped back to California with all of our other purchases in a huge container. Two months later, this container shows up at my mother’s front door. I’m talking huge shipping container. They told us we had two hours to unpack it. We broke open the seal and the first thing we saw were two ginormous wooden crates that were taking up one fourth of the container. We were like, “What the hell is that?” It was a crate inside of a crate inside of a crate and finally it was revealed that these were our green Anduze pots. Good Lord. We probably just paid more in shipping than the actual pots. Typical O’Connell move.

Here is a little history of these pots:
Once upon a time, a small village in the foothills of the Cevennes ranges, Anduze, grew famous over the centuries for its manufacturing of clay pots, urns and jars, a legacy of the Medici design, in awesome but still harmonious shapes and sizes. Nowadays this little township close to Provence, the southernmost part of France, is known worldwide for its garden vases and orange planters, that are an essential landscaping feature of the Versailles Palace timeless garden designs. “ – The Good House.

 “The legend takes us back to a fair occurring in year 1610 when an Anduze potter who was captivated by the elegance of a Medici vase drew his inspiration from its general shape to create the first ANDUZE planter. The result turned out to be a harmonious combination of Italian exuberance and Cevenol (meaning : from the Cevennes) austerity on a stocky bodied planter, embellished by garlands and “stamped” clay badges showing the potter’s name ; since then, the ANDUZE planter has acquired its worldwide French gardens ‘ornament reputation. Originally designed to plant orange and lemon trees, these large glazed planters were displayed in gardens and orange groves to ornate Southern aristocratic properties in the past ; it is the case around the world today.” – La Chêne Vert

“Not only is the Gautier family one of the most ancient dynasty of potters, it has left the strongest marks in the corporation… The oldest written information found about a potter named “Gautier” takes us back to year 1560… But it is likely that the craftsmen’s tradition of this family may go back further in time… When signing their planters which ornate numerous gardens, the eldest pieces being dated 1728 in the vicinity of Vauvert and 1730 in Anduze, this family left its marks in the history of the Anduze planters… We have strong reasons to believe that the Gautier were the first to make pots in Anduze during the first third of the 17th century. One may say that they have largely contributed to the prosperity of this arts and crafts industry to a point where today’s potters owe them a great deal.” – Le Chêne Vert

There are lots of colors to choose from:
Natural-The Natural aspect of Terra Cotta. The planter will naturally become covered with lichen.

Traditional “flammé”-The original colour which made the planters famous around the world. A subtle mix of three shiny stripes of blended colours is displayed to enhance the distinctive features of the planters which fit perfectly in a natural environment: The yellow stripes symbolize the sun, the green stripes imitate foliage and brown stripes the earth.

Green-Green is a traditional colour usually found on antique earthenware such as ancient tiles, culinary dishes, antique olive jars… It is also one of the oldest colours observed on ancient Mediterranean horticultural pottery.


Ceruse finish-A quite contemporary white matt finish slightly brushed over terra cotta. These planters should be set up inside or outside preferably under a sheltered area.
Aged finish touches-Any glazed planter can be hand-stressed once fired into the kiln to obtain an older aspect.

Antica -Touches of brown and green glaze on a contrasting, slightly hand-stressed terra cotta.

Old Antic -The most “authentic” patina. Not only will the rain reveal the pink colour of the terra cotta but by the time the sun rises, the planters will whiten up as they dry.


My favorites are the green and the flamme. I swear to God this thought crossed my mind: What color Anduze pot would my cat, Frances, look best sitting next to?
What are your favorite colors?

I’ve done a little research and compiled a little list of the best sources for these Anduze pots. Voilà!
Authentic Provence
Big Daddy's Antiques
Eye of the Day
Poterie de la Madeleine
Le Chêne Vert
The Good House

                                                                           A tout á l’heure!

Portrait Of a Disease

 November 2010. New York
( Had ALS but didn't know it)
So, I have been receiving an inordinate amount of emails lately from people who read the blog who do not know what ALS is. So, I thought I would explain it. Don’t worry, I didn’t know what it was either and I actually had it! When my doctor told me that he suspected that I had ALS I was like, “Oh, okay, is there, like, an antibiotic for that?” Later that day, when I got home I googled “ALS.” I almost fell out of my chair. Imagine reading this:

Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease or motor neuron disease, is a progressive and fatal neurological disease that causes the neurons that control voluntary muscles (motor neurons) to degenerate. The first symptoms include muscle twitches, cramps, tight and stiff muscles. Eventually, individuals with ALS lose the ability to stand or walk, use their hands and arms, or eat normally. In late stages of the disease, weakness of the respiratory muscles makes breathing difficult or impossible without a ventilator. Cognitive abilities remain mostly intact, though some individuals may experience problems with memory or decision-making. Individuals with ALS will experience weakness of an arm or leg, slurred and nasal speech, and difficulty chewing or swallowing. Most people with ALS die of respiratory failure within 3 to 5 years of the onset of symptoms. There is no known cause and no cure.

New Years Eve 2011
(Still did not know that I had ALS)
Yeah, not cute. I kept thinking, “I have brain damage? How is that possible? I am like a fucking genius and a sharp as a tack. I’m going to become a brain-dead vegetable?” Then, I kept reading and I realized that I was going to become a vegetable but not brain-dead. Great. I think I’d rather be brain-dead. That way I won’t know what’s going on.” So, after this politically incorrect, ignorant train of thought I decided to educate myself regarding ALS.
 June 2011. New York
(Was diagnosed two days earlier on David’s birthday)
 June 2011.Paris
Before my diagnosis, I didn’t know what a motor neuron was. I didn’t even know what a neurologist was. Maybe I am brain-dead. Anyway, basically my brain sends a signal to my motor neurons which should send a signal to my muscles to move. My motor neurons are dead so they cannot send a signal to the muscle. The muscle therefore atrophies. Therefore, my cute little body is paralyzed.

 June 2011. Paris
(with friends, Ann-Lise and Chistophe)
  June 2011. Lake Annecy, France
The progression is called degenerate. The process was slow but not slow. To give you an idea of timing, three years ago I was a perfectly healthy gorgeous supermodel. Just kidding, but I was healthy. Today, I can only move my head. I just got weaker and weaker day by day until one day I just couldn’t move. Not only were my muscles weak but my diaphragm weakened as well. Translation: I could barely breathe. So unfortunately, I had to get this ugly breathing machine strapped to my face, up my nose, pushing air into my lungs. If you thought having a zit on your face was bad, try having a breathing apparatus strapped to your face 24 hours a day. However, it might cover up the zit.

 August 2011. Hamptons, New York
  September 2011. Santa Barbara
I have seen every neurologist, neurosurgeon, orthopedist, pulmonologist, respiratory therapist, nutritionist, chiropractor, naturopath, acupuncturist, psychiatrist, chemist, botanist, priest, healer and witch doctor from New York, Santa Barbara, Los Angeles, Chicago and Paris. I have had every test from blood, saliva, hair, metal, physical, urine and psychiatric. I have had every CAT scan, MRI, and x-ray. I have been prodded with needles in every vein and artery. I have had intravenous vitamin drips and oral supplements. I drank illegal weird Japanese tea. I have had two surgeries. One surgery put me in the ICU because my lungs collapsed. I was on oxycodone for eight weeks until I was nearly suicidal. I have done everything short of stem cells and pigs blood. I was even, egads, gluten-free for a time being!

 October 2011. Santa Barbara
                                                         November 2011. Santa Barbara
So, to make a long story short I’ll tell you where I am at today. I will go into depth about this whole process in my book in case you were worried that you weren’t getting the whole boring story. Today, I am totally paralyzed from the shoulders down. I use the breathing machine when I am at home and when I sleep. I have a feeding tube. I use a miracle feeding tube formula called Liquid Hope that is the healthiest formula on earth. Everyone should take it. The good news is that I can still eat by my mouth. Kind of phenomenal. I have a diaphragm pacer that doesn’t work. I take the ALS medication called Rilutek twice a day. I take a breast cancer medication called tamoxifen once a day because it’s supposed to slow the progression of ALS. I take an amino acid called L–Serine 5 to 6 times a day. I eat everything I want which includes fried chicken sandwiches, chocolate, beef bourgignon, gummy bears, pastrami sandwiches, croque Monsieurs, lots and lots of French cheese, more butter than anyone should, at least five pieces of fruit a day, lots and lots of vegetables, and I have one coffee with cream and sugar a day. I drink green juice, red juice and any other juice that is in order for the day. I used to make my own feeding tube formula which consisted of kale, dark spinach, apples, avocados, nuts, olive oil, tumeric , blueberries and any other superfood that I could find. I have egg whites with crème fraîche for breakfast and usually a salad with lots of olive oil for lunch. My husband always brings me some sort of dessert every day. Even after all of this, I am a toothpick. My stomach may look a little bit bigger but my arms and legs are scary skinny. I have zero body fat. Jealous?

 December 25, 2012. Santa Barbara
 February 2013. Santa Barbara
That is how I am physically. Want to know how I am mentally? Statistically, people with ALS strangely do not have depression. How crazy is that? You get the worst disease on planet Earth and you’re not depressed? Nope. I’m not even mad. This is how I explain it… I had to have my own personal “come to Jesus” moment early on. If you start to think about the disease that is racing through your body that will eventually kill you, you will go crazy. So, I just don’t really think about it. I know I have ALS. I know it’s going to kill me. I know that my daughter will not have her mother much longer. I know that I will most likely die of suffocation. I know, I know, I know. So, therefore, I pretend like I don’t know. Ignorance is bliss. Additionally, the way my daughter and I are getting through this is through humor. We are laughing through the tears.
 March 2013. Las Vegas
 May 2013. Los Angeles

November 2013. Paris
My husband is my hero. He pretends like I don’t have ALS either. He still buys me pretty clothes, takes me out to dinner, organizes fun weekends and tells me I’m pretty even with tubes and wires coming out of my emaciated body. To be honest though, I have been prescribed some anti-anxiety medication. I’m too anxious to take it though. I got it because I had a panic attack at the hair salon. Note to self: don’t look in a mirror for an extended amount of time. When I was at the salon, I just kept looking at myself and looking at myself while she was blowdrying my hair. When you look at yourself and see how your body has changed and you can see that you are sick, you kind of freak out. Also, I’ve been having crazy nightmares. Very detailed, suspicious nightmares. I know I can control my emotions during the day but I guess my subconscious takes over while I sleep and the demons come out. I like to wake up my husband at 3 o’clock in the morning and tell him every detail. I am sure he likes that too.

                                                              January 2014. Paris

What will I do if this all becomes too much, too painful, too difficult, too overwhelming, too heartbreaking, too embarrassing, too much of a burden, too obnoxious? One word: Dignitas.

May 2014. Paris
Currently, I do not feel “sick.” Most days I actually forget I have ALS. Some days I actually feel great. We don’t talk about ALS a lot at our house. We have too much other stuff to talk about. We don’t worry about ALS that much either. We have other things to worry about. For example, Gracie informed us the other day that when she grows up she wants to be a housewife. Seriously, Gracie?

So that’s it in a nutshell. I have ALS. I’m sick. I’m dying. I’m living. I’m living happily. Back to blogging about Provence, shall we?