Alone, one cannot share life
I am happy and thankful to have the opportunity to share my 33-year journey with Parkinson’s disease with you.
A creative, but stressful time
It was the summer of 1987. I was in the process of opening my namesake restaurant, Zarela, on Second Avenue in New York City, and I knew nothing about running a restaurant. I had signed a very risky management contract that permitted me to use the previous owner’s liquor license until I got mine. I had a grand total of $20,000 in working capital. Needless to say, I was under tremendous stress.
While getting a massage, I had an anxiety so bad that they had to call an ambulance. From that day forward, my left hand started to claw. I started having out-of-body experiences that were kind of fun. Now, most doctors think that’s when Parkinson’s kicked in.
It was a very creative time for me. We were busy adapting a wine bar called Tastings on 2, into a Mexican restaurant. I put my collection of arts and crafts in the staircase display boxes where bottles had been displayed, hung up piñatas and papel picado with my name cut out, sewed pink and orange ribbons on the dark green flowered fabric cushions.
My then housekeeper from San Salvador and I tested recipes constantly and I invited press people to dine and give their opinion. We came up with a menu and I decided to serve the food family style. I hired Adela to be our saucier. The food tasted just like if I made it myself.
The restaurant opened on September 28, 1987, and the big recession started on October 17th. But the restaurant was a huge success. We got a lot of good press. Then came books, a PBS series, public speaking, a line of products at WalMart and everything I said I would do when I left El Paso, Texas. But I knew something was wrong with me physically; tremors, a blank look on my face.
It never occurred to me that I might have Parkinson’s. I attributed my symptoms to stress and threw myself into exercise and party, dancing at the latest discos with my friend Alex.
Fast forward to the summer of 2004. While walking to an appointment, I got hit by a cab. I fell and all the contents of my purse spilled out into the street. Someone casually picked up my cell phone and walked off with it. I borrowed someone’s phone but couldn’t contact my beau, who was away, because he never answered calls from numbers he didn’t recognize. I went to the hospital in an ambulance by myself. Signed in and waited.
Hours later, I went home with a crutch, my knees buckling, and crawled up the 4 floors of my home to my bedroom. I called Annie. The next day I went to get an MRI. The results revealed a broken tibia, fibula, torn ACL and barely attached MCL. There was a caveat: the results are not perfectly clear because of the patient’s tremor. What tremor?
…What tremor?
I was diagnosed with Parkinson’s. I immediately called my friend, neurologist Oliver Sacks, and he rushed over. He demonstrated the physical changes that would come: stooped posture, shuffling feet, freezing, halting speech, trembling, hands and fumbling fingers. He was a gifted mimic and the scene was chilling. I pwell enough with this devastating condition to have a beautiful family life, and a great love life, successful career and fulfill all my goals.
BUT I WARN YOU. My plan is not for sissies. You have to really want to work on it. It demands discipline and determination. I believe firmly that one can learn to choose the way to feel. It helps if there is something you love to do that in fact, you can’t live without doing. I love to sing when I’m happy, when I’m blue. And it improves my diction!
Parkinson’s takes many forms and is very individualistic. It progresses at different rates in different people, but it will definitely progress. You can’t stop it! What is universal is the feeling of hopelessness, helplessness. And despair. You can’t stop it.
I’ll tell you a story: One Sunday, Aarón was supposed to come help me prepare the meal. He was very late and I was very upset and let him know it. Aarón said softly: “Mom. Sorry I’m late. We can’t do anything about it now, so why don’t you have a drink and relax?” Now, I always ask myself: Can I do something about it? before I get upset or frustrated. This has helped me very much in dealing with disappointments and losses. I love to dance and my steps no longer flow.
The golden rules for controlling Parkinson’s are: Exercise, Socializing, and Creativity. Though I did not know this at that time, between the first signs in 1987, and the 2004 diagnosis, I exercised religiously and I practiced yoga. I love to entertain, meet people, converse. This was also one of the most creative periods of my life. I was catering, networking, cooking, and reinventing myself. I traveled extensively to research foods and food ways and stories, for my three books and PBS series. I launched a line of soft goods for Walmart.
It is possible to live a good life with Parkinson’s
The inability to walk purposely, safely and gracefully has been my greatest challenge. I was a glamour puss! Sometimes, I freeze and I literally cannot move my legs to take a step. It feels as if I am going to fall on my face. The indignity of it all.
Walking in the streets is easier in a way because there are no obstacles. But I must remember to not look down. I freeze if there is a line, a turn, an elevator, moving stairs, people standing on street corners, strollers, dogs. A laser cane helps but I am often in a panic, scared to go out by myself. My wings were clipped.
Things are easier now. I have found a medicine that is helping me walk.
And I still have so much to do. I want to continue to contribute and be relevant.
Through it all, my doctors, Roy Alcalay and Charles Bardes, friends, and extended family, have been there to lend an ear, cheer me on, or offer moral support. My friend, Barbara, goes out of her way to walk with me to the Y for our water aerobics classes 3 times a week. EXERCISING is key.
MY kids too are there for me. Rodrigo stimulates my mind, makes me laugh and brings me the grandchildren who give me joy. Aarón watches my back financially, treats me to weekly massages and Ubers. We have just recorded a pilot for our podcast, Cooking in Mexican from A to Z.
And I still have so much to do! I want to continue to contribute and be relevant. I want to do everything people tell me I can’t do because I have PD. Record another album, finish my memoir, go out and spread the word that it is possible to live a good life with Parkinson’s.
