This post is in honor of my cousin, Pramodan Marathe who was born the same year as me and has the same smiling eyes as his father, my uncle Padmakar.
Brothers & Cousins
L to R, back row: Sudhakar (my father) with my brother, Sameer; Shrikant with Mukund; Padmakar with Sudarshan
Middle row: Pramodan
L to R, front row: Ashwini, me, Madhuri, Niranjan
I cooked the most meaningful meal of my career as a chef on November 21, 2013. Sometimes it takes time and distance to have a realization of this magnitude, to look back on an event and swallow and digest its significance. But this time, there was instant gratification. Since 2007 I have cooked for clients who are mostly people like me, foodies who want to explore interesting and delicious food. My catering business has led to all kinds of adventures.
I’ve cooked in kitchens that have been featured in architectural magazines and I’ve cooked under unusual or tough circumstances, even building an impromptu kitchen where none existed. Living in Los Angeles, I’ve cooked for my fair share of celebrities too: Tim Olyphant, Judge Alex Kuzinski, Martha de Laurentiis. This spring, even Steven Page, lead singer of The Bare Naked Ladies came to dinner at my house, documenting an Un-Curry pop up for his new show, The Illegal Eater.
Toni moved me like no other has.
The Saturday before the job, I had received email from a man asking about Un-Curry’s catering services. Gary wrote that his girlfriend, Toni was turning 61 on Wednesday and had requested Indian food for a small dinner party. Toni has ALS (Amyotrophic Lateral Sclerosis) or what is known in the USA as Lou Gehrig’s Disease after the legendary baseball player who suffered from it. In the rest of the world the disorder is known as MND (Motor Neuron Disorder).
Toni had just had surgery to put in a feeding tube and she would not be able to eat solid food for much longer. Gary wanted to make her birthday dinner a meal she would always remember. I responded right away, saying I would love to cook for her. I was moved by the request and it hit closer to home than I would have liked. “Let’s talk tomorrow,” I suggested to Gary.
Sure enough he called on Sunday and had the speaker on so Toni could hear me. I heard her trying to call out hello. “Hi Toni,” I replied, “I’m happy to meet you.” Gary gave me a list of dishes she wanted at her birthday dinner. He also asked if I could come in a little early that day and teach him how to cook some of them so he could make them again on his own. “I looked up several Indian caterers but I liked your story best,” he said. “I didn’t even bother calling anyone else after that. Just you.”
Gary and Toni’s menu was full of Indian restaurant favorites, read North Indian dishes like tandoori chicken and paneer (farmers’ cheese); saag paneer (braised, spiced spinach with farmer’s cheese), choley (stewed chickpeas), naan (tandoor-baked bread), pulao (spiced rice), sautéed potatoes, dal (spiced lentils) and cucumber raita, the very dishes I don’t usually cook because Indian restaurants make them well enough and because my goal at Un-Curry is to introduce Southern Californians to the regional richness that is India: food from places that are usually not represented in Indian restaurants anywhere.
In initial conversations with prospective clients, I usually suggest some of my specialties. They are likely not to have heard about them before: tomato-coconut soup; carrot slaw with mustard seed and curry leaves; pomegranate lamb; coconut-jaggery custard, but my clients have never been disappointed. I also create menus tailored to their tastes and the occasion. If they are of Indian extraction or traveling to India, I offer menu suggestions based on their region of origin or travel destination. This time, however, I was silent, simply noting down what Gary requested. “Sure, I can make everything you want,” I said. This was not a time for debate, this was not a party to be fretted over by client and caterer. I just needed to make what Toni was familiar with and what she was craving. “I want to give you a meal you will enjoy and remember,” I told Gary. “And may I bake Toni a cake?”
We emailed back and forth a few times over the next two days to discuss time, locations, address, etc. We agreed that I should prepare most of the food at my kitchen and bring the ingredients for potatoes, pulao and raita to Gary and Toni’s home for a brief lesson. In one email, I wrote that I was honored to cook for Toni and that the job was particularly poignant because I was grappling with the latest news I had received about one of my cousins. Pramodan is just a few months older than me and was diagnosed with MND exactly one year ago. In the space of 12 months he has lost all mobility in his arms and legs and he can no longer speak. No one seems to know how long he will live like this. All that I know for sure is that there is no cure for this disease. My parents visited Pramodan recently and though his physical state was extremely painful for them to witness, they were staggered by his cheerful outlook on life and the constant and loving care his uncomplaining wife gave him.
As I cooked all day Wednesday making sure the food was not too highly spiced, that all the ingredients would be as easy to chew, swallow, and digest as I could make them, and that there was flavor and love in every mouthful, I kept Toni and Pramodan in my heart. Palak paneer, check, choley, check. As I cooked, I wondered if my cousin’s father, my uncle Padmakar had also had undiagnosed ALS/MND and what prior knowledge of this could have done to help him and later, his son. Taking the soft, light, vanilla cake out of the oven, whipping fresh cream with rose essence for the frosting, I despaired over a disease that left your brain healthy while stopping your muscles from moving, trapping you in your own body.
ALS patients go from being able to walk and run to having no movement whatsoever. There comes a time they cannot lift their arms or legs, scratch an itch, pick up a pen and write, feed themselves, touch their toes or touch a loved one. Finally they cannot swallow or breathe or have a heartbeat. ALS allows them to be spectators as it slowly destroys them.
Cooking Toni’s birthday dinner moved me because it reinforced many notions I have held for a long time: that life is short and precious, that every moment is meant to be lived to its fullest. Toni taught me that you could do everything right, as she did, eat vegetarian and healthy; be fit, run marathons, even work as a personal trainer at a gym, and still end up with a debilitating disease which imprisoned an active mind, generous heart, and loving spirit inside a body that refused to do its brain’s bidding.
It was an honor to meet her and see her enjoy my food. When we were leaving, I told her how much it had meant to me to cook for her. “I’m going to give you a kiss now,” I said, bending down to her cheek. She had tears in her eyes.
The day after the dinner party, Gary wrote:
First Toni was happy last night and happy again tonight tasting the wonderful flavors of the food you prepared. My fav and a great addition to our diet is your Raita…so good. Please reinforce to me that recipe. Our neighbors Marlene and Dr. Bruce were also delighted from what I could tell... Your food and discourse on regional Indian cooking was fascinating.”
Even more wonderful was a note that came from Toni the next day. She typed it on her Tobi:
“Thank you so much again. Gary echoed all thoughts and words i could say. Eating food is getting harder so eating delicious food keeps me motivated to keep eating. Please let your cousin know to reach out to me. Not many people can relate to what we go through having ALS. I want to help any way i can.
With love and gratitude, toni”
Two weeks later, Keya’s class started a unit on genetics in science class. Keya came home excited about her next assigned project. “We have to make a medical brochure about a genetic disease. ALS was not on the list the teacher handed out but I asked her if I could choose it because of Toni and your cousin and Stephan (her math tutor who is only 25), and she said yes. Could you please tell Toni about me so I can interview her?”
I connected her with Toni and although they have not yet had a chance to meet, she emailed her the questions she wanted to ask. “Keya, this will be a project for Toni,” I told her, “ a lot of hard work.” And indeed, Toni spent a day using her Tobi computer to write Keya an email about how she had been diagnosed with ALS and how it had made her feel. She sent my daughter a long email typed using her eyes to click on letters and words on her computer screen. It was a labor of love.
Here is an excerpt from her letter as she wrote it (I have not changed capitalization or punctuation):
In looking back before my actual diagnosis, i had symptoms that i didn't realize were symptoms. It is said by experts that the disease begins before there are symptoms.
Yes the disease affects me mentaly and psychologicaly. I am often in dispair and feel numb. I am very sad that i have this disease.
With this disease you need to prepare for the future because as you go through the stages you can do less for your self.
I would also add to keep busy. I worked for 2 years after my diagnosis. Support groups work for some people but i did not do that. Read up on the latest research and try to get in to a clinical trial. Try to fundraise for the ALS support association's. They have fundraising walks.
When Keya wrote to thank her, Toni replied:
Hi keya, it was my pleasure. I am so happy that you chose me and ALS as your Assignment. Many people don't know about the disease so any way we can raise awareness is wonderful!
Have a wonderful holiday and i look forward to seeing you :-) love toni
Last night, Keya finished her assignment. As she was putting it together, we talked about how the disease in its advanced stages affects the lungs and heart. “I hope that does not happen to Toni,” Keya said. “Or Stephan. Or your cousin.”
This morning as I drove Keya to school, my brother called to tell me that Pramodan has been admitted to the hospital. His lungs have collapsed and he has chest pain. Luckily his mother and brothers are with him, as are his wonderful and loving wife and son.
Things always happen for a reason.
Although I don’t know if we will meet again on this earth, Pampu, I am glad that we reconnected this month and that I have a better understanding of what you are going through, 10,000 miles away. I am in awe of your strength and courage and I see your dancing eyes and smiling face as they were the last time we met over a decade ago.
I hope sharing yours and Toni’s story here brings more people an understanding of your fight and your victory over an incomprehensible and powerful foe.
ALS Association: www.alsa.org
Augie’s Quest: http://augiesquest.org
Tobi Computer Information: http://www.tobi-project.org