(Louvre, Paris. Standing in front of my favorite Delacroix painting. June 2011. I was officially diagnosed with ALS this day. Yes, I still went to the Louvre.)
November. I used to only recognize November as the month of my sister's birthday, voting and Thanksgiving. But now, November takes on a whole new meaning. November is the month that I got ALS. It’s the month that everything started. I would not be diagnosed until the following June. I remember the day it started. I was sitting in Central Park with my friend Diandra, my daughter and Diandra’s three children. We call them the pygmies. (On a strange little side note, one of Diandra’s children is named Hawk, named after Stephen Hawking, Mr. ALS himself.) We were watching them play on the slide and I was about to open a bottle of juice. I was twisting the top, twisting the top, twisting the top but nothing was moving. Diandra looked at me and said, “Do you need help with that?” I passed her the bottle and she opened it with ease. Hmmm, that’s weird.
That’s how the next seven months went. A series of me saying in my head, “That’s weird.” Day after day I would say it more and more often because day after day things were happening. Rapidly. This is what I noticed…My hair felt heavy when I was washing it. My dog felt heavy when I picked him up. The laundry felt heavy. I couldn’t tweeze my eyebrows or cut my fingernails. Turning the key to open my front door was difficult. Walking up the steps was laboring. I was exhausted. I fell all the time. I couldn’t wear high heels by January. I self- diagnosed myself with sciatica. I’m a genius like that.
I’ll save all the details for my book but I just want to tell you why I’m explaining all of this. You know how they say that life can change in the blink of an eye. Well, it’s fucking true. October 31, I was fine. November 1, I had ALS. This week marks the start of my fifth year with ALS. I have been sick for four years. That is a lifetime. As I look back, here’s what I think. I think, “Why didn’t I ride my bike more? Why didn’t I go swimming more? Why didn’t I take more walks on the beach? Why didn’t I learn to paddleboard?” I so regret not milking the fact that I had a beautiful heated pool at the country club that I could go to every day if I wanted to but I didn’t because I didn’t want to get my hair wet.
I don’t have any regrets with my daughter, Gracie. I hugged her enough for a lifetime. I kissed her little rosy lips every single day. My over-loving her paid off. She is now full. Full of my love.
I don’t have many regrets but I do have a lot of wants. I want to do a lot of things but I can’t because of my physical limitations. I want to hold my husband’s hand. I want to make out with him because he’s so cute. I want to squeeze my daughter. I want to get drunk and TP the neighbor’s house. I want to do my own makeup. But mostly, believe it or not, I just want to be alone. Because I am completely paralyzed, I can never be alone. Someone has to be no further than 5 feet away from me at all times in case something happens. It is beyond annoying. I want to get in my car by myself, blast the music and sing at the top of my lungs…By myself. I think the worst part about ALS is losing your independence. I don’t want someone to give me a bath, I don’t want someone to brush my hair, I don’t want someone to push my wheelchair, I don’t want to be noticed and I don’t want anyone’s pity or sympathy. I want to be invisible again, just one the billions of people walking down the street without anyone staring at me. I always imagine what I would do if I magically and instantly got 100% better. I honestly think I would hug Gracie and David goodbye and walk out of the house. I would spend a week or two just by myself. I would try to find myself again. I think I would rent a dirty car, put on my jeans and a T-shirt, put my hair in a bun, drive through the desert, smoke cigarettes, listen to music, stop at some diner and have chicken fried steak and swim in a motel pool… By myself.
So what kind of advice do I have? Not much, but I have a little. My advice is to feel everything. Feel the joy of hugging your children, feel the coldness of swimming in the ocean, feel the warmth of a bath, feel the sand underneath your feet, feel the pages of a book… Feel feel feel. Say what you mean and do what you love. Don’t waste your time on toxic friendships with miserable people who should never wear white skinny jeans. Don’t make excuses for other people’s bad behavior (note to self). It’s liberating to be 100% transparent. But most of all, enjoy your freedom. Enjoy making your own choices and your own decisions and making your own coffee for God’s sake. What I would do to make my own coffee! Be alone and just enjoy it.
As I start on year five of ALS, I don’t know how I will behave. Will I become more patient, more introspective, more forgiving? No, I think I decided to be a big brat. Stay tuned.
(Louvre, Paris. Sitting in front of my favorite Delacroix painting. November 2013. Yes, I still go to the Louvre but now I get in for free.) :-)
*Something you don’t know about me? At my very first antique show that I did all by myself, I did not sell one thing. Not one thing! My booth was amazing, I know it was. I was devastated and I cried the entire way home. There is no moral to the story. It sucked. I’m still sad about it. Have any of you had colossal defeats like that? Years later, when I opened my first antique shop, I was so worried that I wasn’t going to sell anything. Good news. Even before we officially opened at 10 AM the first day, a woman knocked on the door and asked to come in early. I, of course, opened the door and she restored my faith in myself because she spent nearly $20,000 on accessories! That was a good first sale! Okay, so the moral of the story is to never give up and believe in yourself…blah blah blah. I should be a motivational speaker. :-)