Hope Exists: A Powerful Mother-Daughter Journey of Coming Together During Adversity
“Life changed forever for all of us.” Today’s women dreamers, Sonica and Rayna Arya, share their heart-wrenching story as mother-daughter based in Mumbai. At the age of 12, Rayna suffered a traumatic brain injury (TBI) on a school trip. Spending months in a coma and years in treatment around the world, Sonica and Rayna share a powerful story of hope, and resilience, the importance of family coming and how they are raising awareness of TBI in India/connecting with families with similar experiences.”
1) You wrote an incredible book, Hope Exists, on a personal experience that changed your life. Tell us about the experience, and what you learned from it?
Rayna: I was just 12 years old, on a school hike when I was hit by car that sped away after flinging me on the highway. I suffered a traumatic brain injury and lost a lot of time before I reached hospital and got the appropriate medical care. It changed my world in a split second. From being this energetic enthusiastic child I went into a coma for almost 5 months and when I woke up I didn’t speak or eat for almost a year. I was in a hospital for over 3 months and then under 24 hour medical care for almost a year at home when I couldn’t walk or do anything by myself. It was as though I was living a horrible nightmare. I used to listen to music and communicate via a PROLOQ app that would speak for me and I would practice art therapy to vent my feelings. I had a lot of thoughts running through my mind and it all got stored to be given expression later in my writings of prose and poetry that I started doing after I came back from my rehabilitation at Spaulding Centre Boston. I rejoined school and I was grappling with an alternative reality. I used to go to school on a wheelchair, I couldn’t do a lot of the things I used to be able to do before, physically and otherwise.
There was a lot of grief at the loss I felt and bitterness and anger at the unfairness of it all. I needed to channel it and be able to get it out of my system….my art and writing helped me do that. My book, Hope Exists, became a compilation of all that I wrote in the 7 years post my accident. There are a lot of emotions that I describe as well as some surreal experiences of my conversations with God. My young mind questioned him-Why me? All the artwork in the book are the paintings done by me over the years. They express the myriad emotions, especially Faces that I enjoy doing as they really bring out the inner turmoil and struggles we all undergo in our lives.
2) What does Hope Exists mean to you, and how do you embody that in your daily life?
Rayna: I believe in the motto “Never Give Up”-your time will come. I did not speak or eat for a year after my accident and only when I returned from Spaulding did I learn to do both. I did not walk for 3 years and now I can walk by myself. Playing the piano, riding a cycle, riding my favorite horse, painting, singing, dancing on stage. I achieved all of this after coming out of a coma. It involved countless hours of relentless therapies-physio, speech and language, occupational therapy, music therapy, art, cognitive therapy and counselling. I never said no to anything as I wanted to get well and I knew that I had to work very hard in order to get back to who the old Rayna was.
I may not ever become the old Rayna again but I want to enable myself to do everything I love in the best way I can. I want to become independent and lead my own life. My parents have been standing like rocks besides me every step of the way and I want to be able for them to get back to a life of their own. So I believe that HOPE EXISTS and that’s what keeps one going through the most challenging times.
3) You have been achieving so many of your dreams at your young age, pottery, interning for a vet, writing a book, music and more. What is your advice to other people looking to pursue their dreams and stay motivated during adversity.
Rayna: My family and I believed that in my recovery period I should do all the things that I felt passionate toward. It motivated me to give it my best shot. I love animals and interned with a vet for few hours every week for a year. I connect with dogs and horses. I ride at my holiday home at a hill station in Matheran for days on end. I’m so glad I got the opportunity to do so.
I love art, music and writing and have been doing all three vociferously. I have started singing lessons for the last 8 months ever since the pandemic has forced us into a lockdown , I do the classes over zoom as my singing teacher cannot visit me and vice versa.
I feel all these outlets help me reconnect with myself…it helps me heal and makes me realise that Life is Beautiful as long as you are passionate and you are pursuing your interests and loves. It becomes soul food that is so essential for our emotional needs and to keep us afloat in the most trying times. So please always follow the things you love and invest time and efforts as that becomes your strength and an extension of yourself-of your beliefs and passions! What you stand for!
It helps you through adversities and the unpredictability of life.
4) As a mother, did you know much about brain injury before? How did you educate yourself on the topic / find resources so you find the best care for your daughter?
Sonica: Rayna had her accident in 2012 and I had no idea what a TBI was back then. Honestly in India there are very few cases that survive a TBI so the awareness is very low and most neurological issues are associated with stroke or congenital. There was only one hospital giving Neuro Rehab Programs in Mumbai then.
Whilst Rayna was at hospital we researched on line on the condition and connected with doctors at Harvard and Children's Hospital in Boston who helped us understand her condition and treat Rayna in Mumbai.
When we arrived in Boston in May 2013 in the aftermath of the Marathon bombings we saw how those children were being made independent at the pediatric division of Spaulding. It changed our perspective, we realised that we were not going to feel sorry for ourselves or Rayna and instead were going to enable her to do the best she can in whatever she can. It lead us to Israel the following year for cognitive rehabilitation at the Feuerstein Institute in Jerusalem and back to New York at the Rusk Institute for further therapies in the years to come. We have been going to Israel regularly and followed up on her plan in Mumbai by calling the therapists down and training a group of therapists here so that the program can be followed through the year.
We read a lot on the subject and keep ourselves updated if any new discovery can help Rayna get better and more independent.
5) As a mother and a care-taker, how did you stay grounded/positive during this experience? What is your advice to other moms?
Sonica: As the primary caregiver one is living the trauma with one’s child. Sleepless nights, hours by her bedside praying for her to heal and wake up from her coma. Months on end by her hospital bed at home doing every activity prescribed to increase her awareness and help her do all her therapies patiently.
Crying into the night as the tragedy hits you and initially not knowing if one's child will survive or not. Praying fervently that she recovers and waking up the next day with renewed vigour facing yet another day of challenges and possibilities. I prayed a lot and had my friends and family standing by us like rocks. We had so many strangers reaching out to us and they told us they were praying for Rayna too .I saw a lot of goodness in people, from the doctors we dealt with to all the therapists who work so unconditionally. I started believing in the invincibility of human spirit along with the humility and grace I saw in these remarkable humans.
Over the years I have started keeping some time to myself and doing things I enjoy from taking a short weekend trip with my girlfriends to cooking lessons, singing, studying Shakespeare again and being part of a book club. Studying our ancient Vedic scriptures, that are fountainheads of knowledge, gave me solace. I visit a lot of the ancient architectural sites -that is very satisfying for me.
Meeting real people and having trusting and meaningful relationships and reaching out and helping people in a similar situation fulfills me.
I would tell other moms going through any such health challenge with their child to also take care of themselves. Continuous care giving of so many years takes its toll and makes one feel overwhelmed and fatigued. It's important to nourish oneself and find your own haven of peace and tranquility and escape there periodically .Talk to close friends and family, reach out when you need help as being super woman is not easy. Keep the light of faith and hope alive because only if you believe can you bring that change. Keep positive and look at each step towards recovery as an achievement, don’t get overwhelmed and anxious of reaching the summit….sometimes it takes years on end. Like Rayna says- Never Give Up!
6) How are you bringing awareness of this topic, and empowering other families in similar situations?
Sonica: Rayna and I have spoken at discussions and given interviews that will inspire other families and children struggling with a similar situation. Rayna has spoken about her book at various schools in Mumbai to create awareness and also inspire children who are in specially abled schools. My husband and I have created a cell where people can get in touch with us post a head injury or a similar situation and we help them medically to connect with the right doctors and therapists and thus use our research and experience. we help raise funds for some families in India who can’t afford the expensive medical care.
We also share the therapists who have trained with the institute in Jerusalem so that the neuro and cognitive rehab helps in the recovery of the patient.
7) As a family, you have been through so many treatments and travelled all over the world for this, what was that experience like? What did you learn as a family through this?
Both: It was a great learning experience travelling with Rayna for her rehabilitation. From undergoing some very interesting therapies like animal therapy and music and water therapy in the US to the very personal and intense sessions in Jerusalem for cognitive behaviour. We imbibed the lifestyles and made the most of learning from the different environments we were in. In New York Rayna became part of a writing program at Gotham after her therapy hours and at Jerusalem we would celebrate Shabbath with our Jewish friends and travel all over the country . We learnt how precious human life is and took maximum advantage of the scientific research done at some of the most prestigious institutions.