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.
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.
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
ReplyDeleteEllie, 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!
ReplyDelete(I also go to Paris frequently so I love your perspective and descriptions). Best of luck, and keep writing!
Thank you for this. xob
ReplyDeleteHi Ellie.
ReplyDeleteI 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...
xo
Brooke
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
DeleteI'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!
ReplyDelete