Ugh. Sometimes ALS just gets the better of me. I usually have to remind myself that I am not Wonder Woman. I have to remind myself that every day is not going to be peaches and that some days are quite honestly going to be a living hell which last week was.
It’s weird, it’s like I’m really strong and really weak at the same time. Mentally, most of the time I am a rock. Physically, I am a wimp. This past week, those two worlds collided and I just fucking crumbled. My feeding tube started to give me a little trouble and all I could think of was that I probably would have to have it replaced…again. The thought of this sent me into a tailspin and it started to affect everything around me. I started to doubt my perseverance, I started to doubt my strength and I started to doubt why I even continue. So, I started to let myself go to the dark side. Usually I try to mask all of the pain, the mental and physical pain that is associated with ALS, but this week it just came pouring out.
On Wednesdays, I have a two hour massage…I close all of the curtains, put on my favorite Patrick Watson music, light my Le Labo Santal 26 candle, completely lose myself without any distractions and this is when I solve all the world’s problems including my own. You have to be pretty brave to be alone with your own thoughts. I have now decided that maybe I should not be alone with my own thoughts. It’s too dangerous.
I thought to myself that may be my little journey is over or at least that it should be over. What am I trying to prove? Shouldn’t I let Gracie and David and all of my friends just go on with their lives and stop worrying about me? Yes, that’s what I think I should do, I decided. I need to put a stop to all of this. It’s time to call Dignitas in Switzerland. But first, I called my best friend, Jenny, and told her the situation. Because she knows me better than I know myself, she said she understood. And then we quickly moved on to a conversation about rough sex with Floyd Mayweather and that is why she is my best friend. I couldn’t tell my best friend Yolanda because she is in Germany with 400 IVs shoved up her arms treating her Lyme disease. When I first got sick, Yolanda made a vow to never complain to me about anything because she knew that any of her complaints would be trivial compared to what I was going through. Now, four years later my Yogi is as sick as I am so I thought I would extend the courtesy and not complain to her so she has no idea about what I have been going through this week.
The next person I called was my sister. I told her that I thought it was time to end all of this and like a typical bossy big sister, she said I wasn’t allowed to.
I knew that I had to call a family meeting between David and Gracie next. I was putting it off because I knew this would be the hardest moment of my life. I let my caregiver go home early because I knew that our little family needed privacy and because I knew this was going to get ugly. Kim Kardashian and I share a similar trait in that we are both ugly criers. I started to talk to David and Gracie about my decision to end all of this. Gracie and David in unison did not think that it was time. After about 45 minutes of my trying to politely convince them that it was indeed my time to go and 45 minutes of David and Gracie not understanding, I finally had to break it all down. For the past five years, I have been strong, I haven’t really complained, I have keep 90% of my feelings to myself, I have put on a happy face and tried to not let my ALS affect their lives. I burst out into an ugly shameless tearful exclamation and quite simply explained that I AM SICK OF THIS SHIT. I am sick of putting on a brave face, I’m sick of all the medication, sick of all the tubes and wires and machines. I’m sick of worrying. I am starting to get jealous… Jealous that other people can walk, jealous that other people can just breathe normally, jealous that other people can make plans, jealous that other people can hug their family, jealous that other people can wear high heels, jealous that other people don’t have to use a straw to drink every beverage, jealous of people who can be just plain irresponsible. I am sick of people staring at me wondering, “What’s wrong with that gorgeous girl in the wheelchair.” :-)
I don’t want all the attention to be on me. I want to be overlooked, invisible, ignored. I want to be able to be quiet for a week and not have people wonder if I’m dead. I want to go to work and have real people problems. I don’t like this little cocoon that I’ve made for myself. It’s too controlled and too safe. All of this and more is wearing on me and I am weary.
After I explained all of this to David and Gracie, we had a breakthrough. They finally understood what I am really going through. It’s not their fault for not understanding before because I’ve never really explained it to them. And then the worst happened… Sitting in my armchair across from my bed was my little baby Gracie curled up into a fetal position, tears pouring out of her eyes unable to speak. For the next 30 minutes I kept begging Gracie to talk to me but she refused. I tried to exhibit my best “inspirational mother” behavior and told her that everything was going to be okay and tried to remind her that “that which does not kill her, makes her stronger.” I told her that all of the perils that she’s been going through with her mother slowly dying will make her a stronger person. She looked at me and said, “No, it won’t.” In all honesty, she is right. There is no good to come out of this. She’s going to be a motherless child and it is going to hurt and she will never recover. Another half hour goes by with Gracie not saying a word until finally through buckets of tears she looks at me and says, “I understand if you need to go but I’m scared. I’m scared to live life without you.”
Well, that did it for me. To see my child utterly terrified gave me the reality check that I needed. I can’t go. I can’t be selfish and take the easy way out no matter how hard this is getting. I decided that I will do everything in my power to continue to stay here for my daughter because she needs me. ALS can do whatever it wants to me… I will fight it, for Grace. I always have but now I need to remind myself that this is not the time to back down. “When the going gets tough, the tough get going.” I need to shut the fuck up, pull up my knee socks, man up and prove to my daughter what a real mother is. A real mother will go to the depths of hell for her daughter that is what I am prepared to do. Suddenly, seeing how utterly vulnerable my daughter was, I felt like I got my super powers back… Wonder Woman is back and ready to take on anything that is thrown my way. Nothing is going to take me away from my Gracie… Not my fear, my worries, not my pain, not my weakness and not my weariness.
So, here I am again. In case you were wondering where I was this past week… This is where I was. I lost my mojo but thanks to my Gracie, I got it back.
*Something you don’t know about me? Well, it’s really about David. My relationship with David is very much Who’s Afraid of Virginia Woolf. Like I have said in the past, we are both very passionate people and neither one of us will ever back out of a fight. However, David has the biggest heart of anyone I’ve ever met. No matter how upset David is with me, when he sees that I am weak, he responds appropriately… By kissing my ass. After our big family cry fest, David did his best to cheer me up. David hates getting our big car out of the garage and driving it around the tiny streets of Paris but Saturday he did it for me. We drove all over Paris, stopped at all of our favorite bakeries, even drove out to the infamous Bois de Boulogne Park to check out where David used to play professional tennis at the Roland Garros tennis club (think French Open) but we ended up checking out the “ladies of the night” who work the park except they weren’t exactly ladies and it wasn’t exactly night. I don’t know why but it always intrigues me how the city of Paris allows this behavior to happen in broad daylight in one of the most beautiful gardens of Paris. As I was observing (from the safety of our car) a transvestite wearing a blonde wig, a fabulous leopard coat, black lacy tights, heels and a purse getting into a strange van with the “secret code” of a red scarf tied around the side mirror at 11:30 AM, I couldn’t help but wonder what this man’s/woman’s life has been up to this point. What brought him to this? He was a baby once. Was he ever loved? Where does he live? Does he take the Metro dressed like that? All of these questions led me to the thought that maybe I should have been a social anthropologist. No time for that now.
David and I continued our tour throughout Paris driving down to the banks of the Seine to check out a péniche. What’s that you ask? Those are the boats that are docked along the river that people actually live on. David and I saw one that was for rent in a real estate ad so we figured we better check it out. I have been craving sunshine and David believes that the cause of my recent meltdown was a lack of vitamin D. Should we live on a boat on the Seine? Are we crazy? It actually looked rather charming with a beautiful view of the Eiffel tower but then I remembered that I suffer from seasickness on top of ALS so maybe the boat thing is not such a good idea.
Our next stop on the “Cheer Ellie Up Tour” we headed to the 13th arrondissement to the Chinatown of Paris because yes, I am still looking for that blue and white Chinese vase. I made David stop in every random shop that remotely looked like it would have Chinese blue and white porcelain. I told David to ask every shopkeeper where I could find Chinese antiques in this neighborhood. Apparently, the Parisian Chinese are not very forthcoming with information because David was met with the standard answer of, “Why you asking about Chinese antiques? I not a spy.” We continued our tour of Paris empty-handed.
Our next stop was in the 6th arrondissement to Rue du Bac where I like to look at rich people stuff. Mind you, I have never left the car even once. David popped in one of my favorite bakeries, Des Gâteaux et du Pain, and brought back to the car a quiche Lorraine, salted and herbed focaccia and some sort of delicious tart. I ate it all in the car and then we continued on to the 9th arrondissement, David’s favorite neighborhood because he likes to pretend that he is urban. We stopped at the farmers market and bought strawberries, haricots verts, brie cheese, a roasted chicken and roasted garlicky potatoes. David definitely knows how to cheer a girl up. On top of all of this he bought me a beautiful bouquet of hot pink and light pink ranunculus. I always have to remind myself that for all of David’s faults he makes up for them tenfold by all of his generosity and doing chick stuff with me all day. For the good and the bad, he’s mine, all mine.Stay tuned for tomorrow’s blog which will be a big thank you to all of you. After that, we will get back to the antique sale and then I will have a little debut of my “smalls” shop.