Sometimes ALS wins. Sometimes you just can’t fight it. Sometimes you let it win. However, there are no winners. Everyone loses.
My friend, Carol, lost her battle with ALS Friday morning. Actually, she let it win. She was ready to go. That’s the funny thing about this disease…you can fight and fight and fight, and you can try and try and try, and you can pray pray and pray…but at some point you reach a breaking point. Carol reached her breaking point and decided to end of her own life.
I’m not going to sugarcoat this and try to find some great moral to this story because there isn’t any. I am not going to sugarcoat this and tell you that she died peacefully in her sleep because she didn’t. I am heartbroken. I am sad, I am devastated, I am furious and I am scared and don’t be alarmed but I’m jealous of her. Her suffering is over. When I received the email informing me of her passing, I burst out crying and screamed out loud, “I’m so happy for Carol!” I meant that with all of my heart. I am so happy that she is where she wants to be… Out of her body. I’m going to tell you a little story that I was saving for my book but I think it’s appropriate to tell you now. The very first day that I was diagnosed with ALS, I was in my apartment in New York… By myself. I was sitting on the daybed in the living room. I think it’s important to note that it was a 17th century Russian daybed. :-) I was just sitting there looking out of my window at the trees and I could feel myself squirming. Squirming, squirming, squirming. I thought to myself, “Ellie, what are you doing?” The squirming continued for a few minutes until I finally realized what I was doing… I was trying to get out of my own body. My body was on the daybed but I wanted to be in the other corner of the apartment… Far away from that girl who has ALS. I was physically trying to escape myself. After about three minutes, I realized, “Ellie, no matter how much you try, no matter what you do, you are stuck, you are stuck in a body that is going to fail you and there is nothing you can do about it so you better just start dealing with it… Right this second.” So that’s what I did. I knew that the only way out of my body was death that’s why I’m jealous of Carol… She is out of her body, her body that betrayed her. This story gets uglier so you might want to stop reading if this sort of thing “affects you.”
Don’t get me wrong… Suicide is a very touchy subject for me. As you know, or maybe you don’t know, my brother killed himself two years ago. He reached his breaking point. Before my brother’s death, I would never consider suicide an option but after I saw my brother suffering so immensely… I understood his actions… I’m not sure if I condone what he did (he left four children and his awesome sister)… But I understand.
Carol is my first friend with ALS. I have never allowed myself to communicate before with anyone who had ALS. I went to one support group in Santa Barbara and left during the meeting and never went back. One of the members of the “ALS Club” as I called it, called me on the telephone. His name was Jake. He was young, handsome, a doctor with two children and a wife. He brought his dog to the ALS meeting. I would not take his call. I wasn’t ready to have a friend with ALS. My loss because he died a month later. I think he was in his 30s. I don’t know what made me correspond with Carol. I guess I was just ready to. Carol could never adjust to her life with ALS. Somehow, I have. When I first met Carol, I didn’t really like her. Her emails to me were very depressing and I had to fight to stay positive. I thought that she wasn’t trying very hard to enjoy her life. Carol had an apartment in Paris and I begged her to come here. She refused. She saw no joy in coming to Paris again. She saw no joy at all. I tried so hard to keep her spirits up, to show her by example that life could be okay with ALS. She wasn’t having it. And, after I got to know her, I understood her and I grew to love her. We had a very, very special bond. I decided to just cut the crap with my positive stupid attitude, and talk to her for real. It was fucking liberating. Only someone who has ALS understands exactly what this disease does to a person. It is not easy talking to people who don’t have ALS about our feelings. You know why? Because it’s too scary for the other person to handle. It’s too much! Whenever someone asks me how I am, I respond, “Good, thank you.” I only tell my very close friends the truth. The truth is that sometimes I want to give up, the truth is that sometimes I hate the world, the truth is that sometimes I just want to die already. You can’t just say this to regular people but Carol and I could say it to each other. Our conversations were excruciatingly sad, heart breaking sad, and very very raw. I kept thinking to myself, “I’m not equipped to have these conversations. I’m not mature enough.” I’ve never had these types of conversations with anyone else….Not my husband, not my family and not my very best friends.
I knew that Carol was going to end her life in November. It was extremely difficult to keep this secret. I wanted to talk to somebody about it, but I couldn’t, because I promised Carol I would keep her secret until it was over. She didn’t want her family to know. She only told her five closest friends. She didn’t even tell her husband because apparently he was a douche bag. It was weighing very heavy on my heart. I felt like I was leading a double life for the last month. Cheerful Ellie and Sad Ellie. Carol and I kept in contact from the beginning of her journey out of this world. Carol decided to just stop eating and drinking. I suggested that she call Dignitas in Switzerland. Dignitas is an organization that helps you end your life with dignity… On your own terms. I am a member. Okay, okay, relax… Walk a day in my shoes and you would join Dignitas as well. Carol did not want to travel to Switzerland… She wanted to pass away in her own home in New York. Because our country is so fucked up, assisted suicide is illegal in America except for two states… So Carol had to suffer, suffer, suffer for two weeks until her body finally succumbed yesterday. She emailed me daily updates about the whole ordeal. Here’s the funny thing, the only liquid Carol allowed herself those two weeks was vodka and the only food Carol allowed herself those two weeks was dark chocolate. She emailed me funny things every day… I could tell she was getting loopy. I told her that if that’s the way she was going out… Then bravo!
Before you judge, first of all, fuck off, and then secondly… Just think about it for 10 minutes. Imagine what ALS does to you. Slowly but surely your body dies yet your mind is as sharp as ever to watch the whole show. You lose the use of your legs, you lose the use of your arms, you cannot swallow, you cannot breathe and you cannot help yourself. Your family has to see you suffer. Children lose parents. Husbands lose wives. You lose yourself. The old Ellie is a distant memory. She is gone. Gone without a funeral. This new Ellie is trying as best she can but, like Carol, sometimes you just have to give up and say, “Uncle.” I’m not quite there yet but believe me, I will get there. There is only so much suffering a person can take for so long. There is only so much suffering a family can take for so long. People with ALS have already lost all of their dignity so to be able to die on your own terms is liberating.
I have been crying since Friday. Yesterday, my husband decided to take me out to get some fresh air and tried to cheer me up. Not happening. I was a bitch the entire day. Normally I’m halfway nice but today it just hit me like a ton of bricks that I hate the world. My husband decided to take me to Gallerie Lafayette, the biggest most glorious department store on earth. I could not have been more miserable so I decided to take it out on everyone who was at Gallerie Lafayette enjoying their holiday shopping. It started when we got in the elevator and 500 billion people tried to pile in at once. Normally, I would have quietly freaked out and had a panic attack. Not today. I said, out loud,” Stop crowding the elevator! We’re not in fucking China!” Then I told two people that they should use the stairs because they were lucky enough to walk. Then, I sort of quietly (so my husband wouldn’t hear me) told the mother who was cramming her stupid baby’s stroller onto the elevator to fuck off. Then I’m pretty sure that I said I hate all Chinese tourists because they have no concept of personal space. I know, I know, totally rude and prejudice but I only meant it for about five seconds. Gallerie Lafayette was not the place for me today. I should have been in a church or at the very least a garden. I was just so mad today. I was so mad that Carol died, that she had to suffer. I am so mad that I have ALS, that my daughter has to suffer. I am so mad that I am so helpless and that this disease has ravaged my body no matter how hard I’ve tried to stop it. This is why I’m jealous of Carol. I’m jealous that Carol is in a better place today. Carol did not believe in God but I told her I would believe for her. So today, I believe that she is in heaven…free of ALS. I was laughing today thinking that when God took Carol yesterday, Carol had to look God in the eyes and say, “Well shit, Ellie was right, you are real.”
Carol and I made a pact. She promised me, promised me, that after she passed away she would give me a sign that she is okay… We decided that the sign would be La Vie en Rose, the song sung by Edith Piaf, Carol’s favorite song. I have been waiting all day for the sign… I know I’m going to be excited when I hear that song unexpectedly but I also know that is going to scare the shit out of me. :-) If you want to depress yourself in a good way, click here to listen to Edith Piaf sing La Vie en Rose. If you want to cheer yourself up and dance around the room, click here to listen to Grace Jones sing La Vie en Rose.
So let’s see, do I have any morals to this story. Not really… just be happy you don’t have ALS.
Thank you Marc and Tom for introducing me to Carol. I am a better person for knowing her.
That’s my story today. I hate everyone except Carol. The end. Love, Ellie.