Grieving Food after my Parkinson’s Diagnosis
Parkinson’s disease robs you of many things. Of ALL the things that Parkinson’s has stolen from me, I would most certainly put food right up there in the top five - the other contenders being spontaneity, independence, movement and dignity.
It is not just a disease of movement. It is also a disease of the mind. It is frustration. It is anxiety. It is helplessness. It is uncertainty. It is anger. It is constantly questioning yourself and the direction that your life is taking. It is making peace with what can never be. It is trying to be positive yet failing miserably. It is learning to live with your demons. It is loneliness and isolation in its most cruel form. It is a living nightmare. It is a tunnel; a long dark tunnel with no sign of light at the end of it. It is constantly riding the waves as they relentlessly come at you with enormous force. It is a cry for help falling on deaf ears. It is an abyss- hollow, deep and dire. It is always giving but not getting anything in return. It is awkwardness. It is pretence. It is trying to fit in with a society that is ignorant. It is always trying to prove that you’re better than it.
It is grief in all its stages, it is grief starting all over from scratch. it is grieving what you once loved doing. And I, for one, loved eating. I realise painfully that I have used ‘love’ in the past sense. Because now, it is a love that I have lost and I am grieving this inability to savour and really love food with all my being every single day. It would be no exaggeration when I say every single meal. Why can’t I eat you ask? To put it simply, it's because my medication fails to work effectively or does not work at all when I eat most foods, mainly protein in all its forms.
Food for me is more than just a source of nutrition and sustenance. It is more than just what my body needs to survive. It is a trigger for the many memories that I have come to associate with different types of food over the years. So, when I am now forced to give up on certain foods, it is a loss and a type of grief of a different kind. It is the inability to relieve memories of the people I love and the places I have been to, as I remember them. It is the lack of control to rewrite and re-create these memories that is hard to deal with at the moment.
The smell of the chicken dum biryani that permeates my nostrils as the big metal vat is opened up. It’s my birthday and mummy has made one of my most favourite meals. It is a perfect lunch for the first day of the New Year.
The crunch of the surmai fish fry as I bite into it.
My parents sitting by me on our dining table in Bombay as I eat this. It doesn’t matter anymore that my flight was delayed. It doesn’t matter that it is two am.
The sight of the prawn koliwada at the beachside hut. Long languid afternoon lunches in Goa. Our extended family all together. Sunshine and synergy in equal measure.
The burst of flavours as I lift a mouthful of chicken tikka masala and scoop it into my mouth.
My most favourite celebratory meal. Exam results, new job, published book..
The sizzle of the chicken pepper sizzler at my favourite restaurant. Friends catching up after many years. Laughter caressing my soul.
Yes I know that substitutes are available. I know that plant-based diets are recommended and perhaps even more healthy but my point is not about making healthy choices. It is about something much deeper than that. It is locking that memory box right now without being able to add more similar memories to it.
These will now remain a sensory experience that I once shared with my closest family and friends. Sometimes even in moments of solitude in order to cope with this cruel condition. Yes, the irony is not lost on me.
Despite all of this, I still turn to food to heal my soul. When I feel like exhaustion has completely taken over my body, I need comfort food. Nothing else seems to help, not dance, not reading, not even a funny book. I feel like a part of me always needs to be held gingerly as it continues to heal. I often find myself gravitating towards the kitchen in some sort of trance. Almost subconsciously, I reach out to a measuring cup and add some rice into a pot. I wash the rice as is tradition and then put it on the hob for it to cook. Following which I starr the preparations for making Dal. Actually let’s be specific - daali varna in Konkani or varan in Marathi.
The cooker blows three whistles indicating that the dal has cooked just right and I proceed to add tadka to the dal which is by far the most important step to pass the daali varan taste test. A teaspoon of oil, a tad bit of jeera or cumin powder, some hing or asafoetida and pepper powder which is added when this beautiful bubbling mixture comes to a boil.
The sunny golden liquid is proportionately mixed with fluffy white rice. Fingers work best to get the ingredients to mix perfectly. Trust me when I say that you don’t need much else. However, if you are feeling a bit adventurous, you could always supplement this already amazing combination with papad, salad, pickles, and/or plain yoghurt.
All is not lost. Food still comforts me; it still provides me with nourishment and soothes my soul. But, I write this because there is still loss. My diagnosis impacted my diet and that has been such a hard loss to bear. I know that I am not alone; I know there are other people out there who have had their relationship to food forcibly changed by diet.
Grief is a deeply personal emotion. There is no right or wrong way of coping with this complex set of feelings that flow when one is grieving, and, in that same vein, no one can ever tell us which losses in our life “merit” grief. For me, food now continues to walk that sorrowful balance of being, still, a source of pain and a source of solace.
Written by Snehal Amembal
I am a freelance writer, editor and poet based in Surrey (UK). I currently freelance with Business Insider, Her View From Home and Motherly. My writing primarily reflects my motherhood journey, memories of my childhood and the essence of everyday moments which I record in my FB blog ‘ Notes On The Go’. I also review books authored by writers of South Asian heritage on my blog Desi Lekh.
I have authored three chapbooks, ‘Pause’, ‘I Am’ and ‘In Between Love' . My work has appeared in anthologies as well as in literary zines. I worked as an Editor with Daily Life Magazine for 1.5 y (2020 - 2021). You can take a look at my work here https://linktr.ee/mommy.snippets
Finally, I am a Young Onset Parkinson’s Disease (YOPD) warrior and create awareness about the condition through my writing. You can find me on Instagram: @mommy.snippets
