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It's Not All Rainbows and Unicorns over Here in Paris

So, I know with these blogs that it could seem like everything is faaaabulous in Paris for me. Fortunately, most of my life, with this little distraction I have called ALS, is rather uneventful healthwise. I still wake up in the morning and have coffee, plan a fun day, eat well and sleep peacefully. Living in Paris makes me feel like I have already died and gone to heaven. For me, Paris is utopia. The architecture, the history, the traditions, and the landscape all marvel me on a daily basis. I feel like I have stepped back in time and get to live in history. Sometimes, when I see a modern structure in Paris, I close my eyes and pretend it’s not there. I am fully aware that I’m living in fantasyland. I am lucky enough to be able to on a daily basis have lunch in my beloved Palais Royale garden surrounded by roses, statues, a fountain, abstract memories of Colette and Jean Cocteau enjoying the garden, impromptu violin performances, and experiencing an overall sense of peace, calmness and history.

 Unfortunately, sometimes my ALS creeps into my fantasyland and attempts to destroy my happiness, my peace and my sanity. After a wonderful evening with my friend Debbie and her daughter Kelsey at my favorite little Italian dive, I began to feel a little something funny with my stomach. A couple of years ago, I had a feeding tube inserted and it has always caused problems in addition to the fact that it’s disgusting. I got home and just decided to go to sleep. Well, lo and behold, I was awakened by intense stomach cramping at 5 o’clock in the morning and realized that the tube was literally coming out of my body. Emergency. Call the paramedics… Again. Two handsome French paramedics show up in my bedroom within minutes. On a side note, I have a new beautiful snobby elusive kind of bitchy kitten named Frances. She has never given me the time of day. Strangely, as the paramedics were examining me, in comes Frances to survey the situation. She jumps up onto the bed and quietly creeps onto my legs and sits with me. She has never done this before. Maybe she does care. Anyway, the paramedics carry me out to the ambulance. An ambulance ride can be an extremely tense and stressful few moments of someone’s life. Not the case in Paris. How can someone be stressed out as you are being driven by a chauffeur/ambulance driver, along the Seine with the midnight blue van Gogh sky above you and the Eiffel Tower twinkling in the background. Honestly, I was cool as a cucumber and wanted the ride to last forever.


I snapped back into reality when I got to the hospital. Pitie-Salpetriere Hospital. This is what socialized medicine gets you. Complete shit. All I ever remember about this hospital is that this is the hospital that could not save Princess Diana. Over the course of the next two hours, I was never seen by a doctor, was never admitted into a room, was side-by-side with drunk French people, the same lady that was scrubbing the floors was also the nurse, all of the nurses and doctors coats were dingy white like they have never seen Clorox before and the actual building look like it was about to fall down. After about two hours, I came to my senses and decided to go to the American Hospital of Paris in the suburbs of Paris. I knew that my insurance would not cover the cost, but this was an emergency. So off we go into a taxi to the American Hospital.

Night and day, I tell you! It was like I was checking into a five-star hotel. Valet parking, doorman, fresh orchids in the lobby and the smell of expensive coffee. Right as I was wheeled in, I knew I was on rich soil. There was a morbidly obese Saudi gentlemen in a custom enlarged wheelchair with a private attendant helping him. You could tell he had so much money that he literally stuffed himself to the point of obesity on foie gras. We were taken down the soothing blue quiet, peaceful hallway to the doctor’s private office. I noticed that everyone was very reserved and perfectly dressed. Lots of cashmere cardigans, Roger Vivier flats, Hermes bags, handsome suits. I knew I was at the right place. Don’t you just want to punch me right now. We glided into the gasto doctor’s office that had soft music, hardwood floors, open windows with trees outside. Complete opposite of the mental institute that I just left. The doctor was with me within five minutes. He took one look at my feeding tube and decided that I had to have surgery right away. Open the floodgates of tears. I had already been crying since 5 o’clock in the morning and it didn’t stop. Everyone thinks that I am so brave and strong through this ALS but I’m actually not. I am a complete crybaby and scared of everything, including Band-Aids. When I heard the word “surgery,” I knew everything that that entailed. Hospitals, operating rooms, needles, pain, fear and terror. With my condition and my compromised breathing, it is extremely risky to put me under anesthesia. Doctors make me sign waivers and orders detailing my directives if I want to be resuscitated or if I want advanced life support or to be intubated if anything goes wrong during surgery. This is the moment where I completely lose it with only thoughts of my daughter in my mind. I wouldn’t wish this moment on my worst enemy. Well, I take that back… I could wish this on two people in particular. Anyway, it kills every inch of spirit that I have and sends me into a complete tailspin of fear.

I agree to the surgery because my only other choice was to die of septic shock. So, in I go to the third floor of the hospital to a clean, modern, peaceful private room with a private bathroom and my own nurse. So far so good. The bed was covered in soft quilted fabric and I was ready to take a nap but the doctor came in to have a chitchat. I started to cry again. He was extremely gentle and assured me that he would take care of me. So here we go… Into the operating room and I start to cry again. The anesthesiologists came to have a talk with me and answered all of my questions. He told me that he was going to do something called “flash anesthesia” where I would only be under for 10 minutes and he could completely monitor and control my breathing. I asked about 1 million questions and he finally told me that I needed to trust him, trust the doctors and have faith. I was sure I was going to die. Sure of it. I had previously called Gracie and told her that I was going to have surgery. Normally, I do everything in my power to not scare Gracie, but I couldn’t control it this this time. How do you tell your daughter goodbye, possibly for the last time. I had already called my best friends, Yolanda and Jenny to remind them that they have to take care of Gracie if I die. ALS blows.

I was already on the operating table, so there was no turning back, because that would just be rude. I have never done drugs and I don’t even like to take medicine, but I have to admit those few seconds before you pass out on the operating table are golden. For what seemed like an eternity while I was under anesthesia, my life was not flashing before my eyes. I was not having any godly, epiphanal moments. Nothing like that. All I could remember while I was out was that I was on Pinterest scrolling through pictures of French châteaux. Swear to God. I am so shallow. For this next part of the story, I remember none of it. It was told to me by my caregiver, nurses and doctors. They told me that when I started to come back around after the anesthesia, I did the following… I woke up and started yelling,” I’m alive! I’m alive!” Then apparently they told me that I asked the anesthesiologist to marry me and I told the doctor that I loved him. The good news is that obviously I’m a happy druggie. The other good news is that the surgery was successful. The doctor was able to take out the problematic tube and insert a new type of feeding tube called a button. I was taken to the spa/recovery room where I was given warm blankets, fluids, pain medication and antibiotics. I was actually pretty relaxed. Both the doctor and the anesthesiologists came to check on me and give me hugs and kisses. Swear to God.

After having a pleasant lunch of yogurt, apple sauce, a little gateau and some tea, I took a much-needed nap. Upon my awakening, I was told that I was good to go home. My nurse helped get me dressed, brushed my hair, put some lipstick on me and got me into my wheelchair. I was escorted to the front desk and presented with a bill for $45 billion dollars. Worth every penny. So, the moral to this story is… Nothing. Just a little glimpse into my life.


  1. Elle, first and foremost...I am so sorry from the bottom of heart that this happened to you and for all you have to endure due to F******g ALS....secondly....I thank you for sharing it because you are seriously talented in telling the story...your writing is brilliant in every way!! xxx

  2. Ellie, I have been following your blog for some time and you truly make me laugh out loud. I too have a dear friend with ALS and you two have similar wit. I hope you make a book from you blog because I would buy it in a heart beat and give it for presents until everyone I know has one!
    (I also go to Paris frequently so I love your perspective and descriptions). Best of luck, and keep writing!

  3. Hi Ellie.
    I can't tell you how much I appreciate your honesty, courage and sense of humor. I write a blog as well, but I tend to keep things light and happy. I once told another blogger that everything is beautiful on Velvet and Linen. I wanted my blog to be a pretty place to escape. By nature, I am a "glass half empty" kind of gal, and I try to fight this all of the time. My blog is my way to focus on the wonderful things in my life. There is no chronic pain, a father with dementia, hurt, insecurities, etc…
    Your blog is also a place of gratitude and a reality check.
    I look forward to learning from you and laughing with you...


    1. Dear Brooke, I have been following your blog for years. Love it love it love it. Just for the record, you don't seem like a "glass half empty" kind of gal. Or at least you hide it well. I laughed at your other comment when you said the ice ball hit you in the face. So funny. Going to go read your blog today. XOXO

  4. I've only found your blog recently so only just saw this. Somewhere I think I picked up that you are writing a book but I'm not sure what it's about. But I so hope it's about life and I so hope this is your first chapter. You remind me constantly how lucky I am to be alive--everything after that is pure gravy. Even better, you do it in a way that makes me laugh. You're book will be AMAZING!