Houston, We Have a Problem...

What a difference a day makes… Just last week I was cozying up in my cute farmhouse in Provence with my favorite caregivers, Teddy the big dog with a heart of gold, Valentine the little dog snuggled between my boobs, and Iris the little injured black stray kitten holding on for dear life, 50 sheep outside, plane tree lined streets, Alpilles mountain views and the promised Provençal lifestyle depicted by my favorite Impressionist painters at my fingertips…

And today…

I am in a palliative care center in Paris.

But let’s back up… What could have possibly happened within a few weeks for this drastic change? Well, it turns out I am a tad bit more delicate than I thought. With the past six years that I have had ALS, I have had everything under control, monitored and finely tuned… Caregivers, medication, feeding tube formula, vitamins and my sanity… And then all hell broke loose. My caregivers quit because I had too many animals and they hated living in Provence. I stopped taking my medication, couldn’t find a good masseuse, the kinesiologist never returned my calls, the post office couldn’t find my little farmhouse to deliver my feeding tube formula so it got lost, the new Moroccan Muslim nighttime caregiver was too busy smoking, drinking espresso and praying to Allah to give me my vitamins, I didn’t have the energy to ask for my regular chai soy latte and green juices. My husband, David, showed up at the house on Friday with three new caregivers who, bless their hearts, were/are idiots and I think one of them had elephantiasis of the balls… literally… which was the straw that broke the camel’s back. My little body just couldn’t take it anymore and I crumbled.

I couldn’t hold my neck up, I couldn’t even swallow water or food, and on a TMI (too much information) level, I couldn’t go to the bathroom without some powerful drugs. A recipe for disaster. Time for a little hospital visit, wouldn’t you say? The paramedics arrived and got me ready for transport to the hospital. Here’s the best part… They took me out through the window like a fat person because my doors were too small for the stretcher but probably just to humiliate me. The doctors at the hospital thought it would be best to check into a palliative care center (whatever that is) that specializes in ALS losers. David thought it would be best if I did so as well, but… in Paris. Au revoir, Provence.

 

So here I am. I arrived with a broken heart, a broken body and broken moral. I thought to myself, “Maybe it’s time that I exit gracefully, while I still can.” I had David take me to Notre Dame Tuesday night like to, I lit a candle and started to have a little discussion with the man above. I wish I would have politely asked, “God, why must I carry such a heavy burden?” But instead, it came out more like, “Dude, what the fuck?”

 

I asked him, “Why are you throwing so much at me? Are you trying to force me to quit? Are you trying to break me? Are you trying to see how much I can take? Are you searching for my breaking point?” As I sat there waiting for answers amongst a sea of tourists, I felt alone. All alone for the first time in my life and especially the first time with ALS. As I waited for some sign from God, I started to feel myself break. All of my six years of bravery were being reduced to rubble right before my eyes. I was losing my mojo in Notre Dame of all places.                                                             

 

Then I thought to myself, “Ellie, this is what separates the mice from the men.

You can either give up like a coward or forge ahead and prove to yourself that your life is worth fighting for. You just might have to fight a little harder."

 

So, call me a fool, but this is what I decided to do. I am going to fight my ass off to stay alive. I have now transformed the palliative care center into my wellness center. I have informed the staff that I am not here to die, I am here to thrive. I will spend the next month recuperating on my own terms. This means doubling my food intake, everything natural and organic, increasing my amino acids, pounding my medication, sucking down green juice after green juice, chai soy latte after chai soy latte, coconut oil, coconut water, flaxseed oil, turmeric and guacamole… Lots of guacamole.

Massages, meditation, acupuncture, physiotherapy and kinesiology.

 

That’s what I will be doing physically. Mentally, you know what makes me happy… My blog, my shop and writing my book… So that’s just what I’ll do. Little does this palliative care center now that I will be transforming my room into an office, an antique shop and a writing retreat.

 

Gracie and David have been with me every step of the way. My mother and sister are keeping me laughing and all of my friends, as usual, have been fucking champions. And I have decided to treat myself like a princess while in Paris and I will order beautiful flowers from Odorantes on rue Madame and chocolates from Patrick Roger on Boulevard Saint-Germain.… To keep my spirits up, of course.

 

I will be here for a month, so let’s make the best of it!
XOXO