We have to take a short break from the Lala Land that is Provence and have a dose of reality, my reality. Because I’m not one to keep secrets or sugarcoat the truth, I thought I’d tell you all just exactly how my Wednesday unfolded.
I had a prescheduled appointment with my Parisian ALS specialist, Dr. Meininger. It’s kind of our yearly checkup. Dr. Meininger and I go way back. I was diagnosed with ALS in New York in June 2011. Within three days of that diagnosis, my husband and I were on a flight to Paris to go see Dr. Meininger because supposedly, “He is the best.” Not to be a bitch, but in my mind no doctor is the best until he cures ALS. Oh, let me warn you, whenever I have to go to the hospital my super bitch superpowers take over. I have mercy on no one. I hate the cabdriver, I hate the gloomy Parisian weather, I hate the hospital, I hate the décor of the waiting room, I hate my husband, I hate my caregivers, and most of all I hate myself. The good news is that this only lasts until I am out of the hospital and back home watching Bravo’s Ladies of London.
By the time we got out of my apartment and into the cab on the way to the hospital, I had already said about 25 rude comments to no one in particular. The only saving grace about having to go to the hospital in Paris is that at least the drive is gorgeous. The driver took the route along the Seine River and I was silently passing judgment about everything I saw. I finally just had to laugh at myself. Why? Because we were driving by one of my favorite mansions of Paris, Hôtel Lambert, which has an incredible history and a controversial present. Once owned by the Rothschild’s and now owned by the brother of the Emir of Qatar who bought the house for a reported $111 million and has been doing a little “renovation work” since 2007. As we drove by the house, I said to myself, “When is that fucking house going to be finished?” I laughed because I wondered why I cared, why I thought it was any of my business, and why it was bothering me so much. Didn’t I have bigger things to worry about like what this doctor is going to say to me today? But no, my concerns were about the construction delays of a mansion in Paris.
Hôtel Lambert which is a house, not a hotel, is a 17th-century mansion in which Chopin composed, George Sand wrote and Voltaire lived with his mistress. Click HERE for the history of the house. I actually learned about Hôtel Lambert from my favorite book of all time, The Finest Houses of Paris. You can buy it HERE.
There was a terrible fire during the renovations that cost irreparable damage to priceless ceiling frescoes.
Hôtel Lambert as it sits today which irritates me.
We arrive to the hospital with my bad mood intact. Pitié-Salpêtrière Hôpital. I referred to it as, “The hospital that couldn’t save Princess Diana.” And for that reason, I will forever hold a grudge. It literally looks like a mental institute which I found out it used to be in the 1700s. I have to say that it is rather interesting that this is the hospital that the neurologist Dr. Charcot first discovered my disease, ALS, in the 1800s. In France, ALS is known as Maladie de Charcot. Driving deeper into the hospital I see a building called Babinski. I laughed and said, “Failed that test.” Dr. Babinski studied under Dr. Charcot at this shit hole of a hospital and his Babinski test can be a signal for ALS. Floods of memories came rushing back to haunt me regarding my first days of being diagnosed with ALS. And here I was, at the epicenter of ALS. Current mood: borderline violent.
The waiting room did not lift my spirits. I was surrounded by freaks with ALS. Oh wait, I’m one of them. I’m going to let you in on a little secret that you would never know, never detect unless you had ALS. When you are in a waiting filled with people with ALS, you are basically sitting with a room filled with ghosts. These people are not themselves. Their physical bodies may be right in front of you but their spirits and souls are somewhere else. You can see it in their eyes. We have a disease with no cure, a disease that ravishes your body like a rabid pitbull, and promises a grand finale of death by suffocation. This is not something that a human can comprehend, therapy it away, antibiotic it away, or even nary try to process. The only, only course of action with ALS is to escape. You have to escape yourself and your body and to go to a safe place. That’s why all of those people, including me, in the waiting room of an ALS clinic, aren’t really there. I knew all of this already so I just continued my day of bad behavior and rude thoughts. The lady next to me who came with her husband who had ALS looked like a prostitute, so I took a picture of her. The gentleman sitting across from me looked like he had ALS compounded with jaundice, so I took a picture of him. The lady sitting next to me with saliva dripping out of her mouth was making me sick and I decided that everyone in this room needed a fucking green juice. Why couldn’t I have gotten a prettier disease?
Here comes the great part, my discussion with my doctor.
Dr. Meininger spent the first half of our appointment basically telling me that no clinical trials were working. I listened to him say at least 345 times, “Clinical trial blah blah blah with a new drug called blah blah blah only worsened the ALS patients condition, so I’m not convinced.” I’m not convinced. I’m not convinced. I’m not convinced. Over and over and over he said this. How is someone supposed to be hopeful when the premier neurologist, Mr. ALS himself, has exactly zero to offer you. My only response was, “So then, how can I put myself out of his misery?” I think he was a little surprised that I had just asked him how to kill myself. I don’t think I was truly asking, I was just being facetious. Sort of.
Here comes the funny part.
Dr. Meininger, explained to me that there was a clinic in Paris that would help me “end my life.” Let’s back up a bit before the majority of you freak out. Let me just give you a scenario. If you were told, “You are going to choke on a fishbone and die on Tuesday” you would literally lose your mind until Tuesday. Imagine having that scenario for the past five years. That’s where I’ve been. You are not supposed to know how you are going to die, but I do and it follows me day in and day out until I finally reached the decision that I was going to get in front of this situation. I will be damned if I’m going to sit around and let ALS suffocate me. If anyone’s going to suffocate me, it’s going to be me. Or at least David.
However, Dr. Meininger said that in order to be accepted to the clinic I had to spend a week there “getting to know everyone.” What the fuck are you talking about? Why would I want to get to know everyone? I kid you not, Dr. Meininger said, “The clinic likes to get to know the people that they are going to kill.” I don’t know if it was lost in translation or because his English is only so-so, but I burst out laughing. I thought, “Really? My executioner wants to get to know me? What if they fall in love with me and won’t perform the final act? Do cats go to the vet a week before they are going to be put down due to their cat cancer so the vet can get to know them? I prefer to go like Marie Antoinette with someone wearing a black hood. Wham Bam, thank you ma’am. I’m in no position to make new friends. Don’t want to. I want to wake up on a Tuesday and die on a Tuesday, if you don’t mind.”
The doctor told me that this was not something that could be decided quickly. Really? You think I just started thinking about this? How about I’ve been thinking about this for 1580 days, thus far. I could see a look in his eye that maybe he wasn’t going to approve of this. And then, of course, because I am me, I thought to myself, “Look douche bag, you are supposed to be the expert with ALS and the only thing you can offer me is a medication that costs $1200 a month, has the side effect of liver disease, and will extend my life by two months. I think I’m going to start doctor shopping. They do it in New York so I’m sure I can do it in Paris. I will find a doctor who will follow my program.” I think my doctor saw my disappointment and agreed to make the necessary calls to the clinic when the time comes. And then, of course, because I am me, I asked if I could have the name of the place so I could do a little research. And by research, I meant that I wanted to check out the decor. You can bet your bottom dollar that I’m not going to die amongst ugly wallpaper. I figured I would use the week “getting to know the staff” and actually use the week to redecorate. I’m thinking de Gournay wallpaper (I deserve it, I am dying, for God sake) all of my paintings and picture frames, my Diptyque candle and all of my dishes. And my cashmere blanket. And my hot chai tea. There. That’s all I need.
Then Dr. Meininger told me that they would have to administer a morphine drip. “You mean a needle?” I asked. His answer was yes and so my answer was no. No, I don’t do needles. David will have to just suffocate me in my sleep in the comfort of my own home. With all of my bad behavior this week, he might just do it. :-)
Trust me, these are not the conversations that in my wildest dreams I could’ve imagined having, especially at my age. I’m not supposed to be talking about this. I’m supposed to be at work, having a taco at a random food truck, planning for the holidays, screaming at Gracie to clean her room, going on long weekends to Normandy with David and petting my dog. These are not normal Wednesday afternoon conversations. I don’t want to talk about all of this, I don’t even want to know about all of this.
The reason that I actually do have these conversations is because I need to know that “my end” is not going to be scary or painful. Five years ago I had no idea what the word “hospice” or “palliative care” was. Swear to God, I didn’t. Never heard of it. Let me also state that when I was first diagnosed with ALS, no one ever told me about how to control the end of ALS. So, subsequently I’ve been scared for five years. You would be to. I didn’t know that things could be controlled, that I could be gently put into a restful place without pain or fear. Sometimes this is all one needs to know. It’s called options. For some reason it brings me great peace. I realize that knowledge is power but in contrast, ignorance is also bliss. I like to ride the thin line between the two.
The good news is that I don’t need to decide any this now. Dr. Meininger said that I looked great and that I still had years ahead of me because the ALS has not spread above my shoulders which is nothing short of a miracle. Girlfriends, it ain’t over yet. So, if you guys will have this bobble head for a bit longer, I’ll be here.
You would have thought someone would have brushed my hair. Guess not.
Because I’ve already opened this can of worms, here’s a question for all of you: What would all of you do if you had ALS? I’m not asking for your advice, but I would just generally like to know what you guys would do for yourselves. Be honest. Really think about it, what would you do? Would your religion get in the way? Would your family persuade your decision? Would you ride it out to the last moment? Would you opt to exit gracefully? What would you do? How would you do it? Would you make a big production out of it? Would you tell everyone or would you go quietly? Pray tell…