Preethi Srinivasan was a young and energetic achiever in every sense of the word, till an accident made her a quadriplegic overnight. On Mother’s Day, Preethi’s mother Vijayalakshmi Srinivasan talks about what it means to be a mother and a friend to her daughter and to ensure her daughter always feels loved and cared for.
From being a mother of a super achiever child to suddenly having to cope with the child's disability, what were your first thoughts and feelings?
On the day of her accident, Preethi was dressed in a beautiful yellow T-shirt and cool overalls. With her sunglasses on, she looked so happy to be off for her college excursion that my heart was overwhelmed with love.
She was a mature and responsible girl. In 1998, the first cell phones were just beginning to come into the market, and she called me from her friend's phone to inform me that she was on the bus to Pondicherry and she would be back home safely.
Then, at around 3 PM, I got a phone call from administrators at her college, saying that she was involved in an accident and would be brought straight to a major hospital in Chennai. I didn't know what to think, but not even in my worst nightmares could I have imagined what was in store for us.
Her condition was so life altering that we didn't have time to think. We just had to deal with whatever situation life had thrown at us as best as we could and keep going. My only thought was that she was alive and we would have to do everything we could to ensure her safety and happiness. That's all.
How did your role change as a result of Preethi's accident?
Preethi is an only child and all three of us, she, my husband and I have been extraordinarily close to each other. Most definitely, my role in her life after the accident has changed, but it has only made our relationship deeper and closer.
After the accident, she became a quadriplegic and needed my help for even simple things. In effect, I became her primary caregiver, nurse and sometimes doctor. She was so devastated, she desperately needed our love, comfort and care and we were there to provide it.
Whenever she needed, whatever she needed – whether it was a counsellor, a friend, a physiotherapist, a spiritual guide, we had to be there for her, because she was terribly shaken by the accident. She still needs me constantly, whether it is to change the channel or even scratch her face, so I'm there for her, as her hands and legs, in which ever way she needs me, unconditionally. And, apart from her physical needs, I think the reassurance that she is loved, that she's definitely where she belongs is what she needs most, and she always gets it with me.
How did you come to terms with the situation? How long did it take?
Quite honestly, quadriplegia is not a situation one ever comes to terms with. Every day brings with it new challenges, new hurdles to cross, and we just flow with it, like water does over rocks and boulders. However, in terms of getting over the initial shock of the accident, I think it must have taken us at least two years, just to understand the severity of the situation, to stop waking up every morning in the hope that today will be the day she will start walking! It took much longer to fully accept the situation and start moving forward from there.
What are the biggest day to day challenges that a mother of a child with a condition has to face? What was the worst thing someone said to you?
The challenges are many and constant, but we learn to deal with them. The hardest thing to get used to are the emergencies, which can come up at any time, anywhere, and could be anything.
Most people live under the illusion that life is guaranteed, they take so many things for granted. However, in our case, we constantly live in the fear that her life could be at risk at any given moment, so we can never be complacent. For example, she regularly suffers from urinary tract infections that cause her catheter to get blocked. This results in something called autonomous dysreflexia that causes the blood pressure to fluctuate terribly and could be life threatening.
When she is in unbearable pain, or when she suffers from near death situations, and she has already overcome two of these, the uncertainty and fear are unbearable. When she had her first bedsore and the doctor had to cut out the dead tissue from her body, it was exceptionally painful for me to watch. Later on, I started doing it myself, because in the end, I knew that it was for her own benefit. There is no point in panicking and falling apart. It will not help her. The greatest challenge for me is to remain calm, composed and functional, so that I can deal with the emergencies in a detached and efficient manner. Otherwise, it would be impossible for me to carry on.
Society has been harsh to us in many ways, but because we had each other always, we were never unduly affected. We have faced many rejections, obstacles and struggles, but each time, we were able to persevere and overcome, because of our strong spiritual foundation and close bonding with each other. Both in the US and in India, we have faced many situations where people insulted us, but we were able to calmly face the situation. When Preethi was denied admission into college due to her disability, it came as a terrible shock to us. But later on, we were able to fight back and in the process, create much-needed sensitisation and awareness.
Once, when we had gone to a public function, we were asked to leave stating that, "in this space taken by your daughter's wheelchair, four people can stand." It was very painful because we had taken every effort not to be in anyone's way, and the place wasn't even fully packed. There are many temples that do not allow wheelchair users to enter the precincts at all. In the beginning, we were deeply hurt many times, for many reasons, but then we realised that the problem was not with us, but was mostly due to the insensitivity and ignorance of others. From then on, we are much less affected, and nowadays have begun to use satire and sarcasm to turn such events into humorous situations.
Is it any easier on the father? If so, how/why?
I don't think it is any easier on the father at all. On the contrary, I think it's more difficult in some ways. In the case of Preethi's father, he had to carry a great deal of guilt that he was not able to protect her from harm because he was physically absent at the time. There was no logic in this, but he quietly carried the burden of that guilt, till it killed him. The circumstances of his death, due to a silent heart attack, when he was just 57 years of age and in very good health, gave us very clear indications that he died of a broken heart, nothing more, nothing less.
Men often have more trouble in accepting and expressing their emotions, especially grief, sorrow, vulnerability and helplessness. So, being forced to accept the lack of control in terms of their ability to change things, and having to watch the child suffer without being able to do anything is really difficult on any parent, especially the father, because their protective instinct is to strong.
How did you overcome your own depression and anxiety to make life more liveable for the child?
It is extremely difficult and painful to be witness to suffering in general, but when it is your own child, the struggle is multiplied manifold. Helplessness often results in anxiety and depression, but the knowledge that you are responsible for the child's welfare, gives us the strength to become objective about everything and act. There is no other choice, there is no easy way, no shortcut. She's your child, and she needs you. So, you have to be available for her at all times, at your very best, because that is what is required of you. It's that simple, not easy at all, but simple.
And, on the rare occasions, when it seems that even one's best may not be enough, then it is the faith in God, trust in the divine that can come to our rescue. It doesn't matter which faith one follows, but what is important is the acknowledgement and acceptance that there is a greater force that controls the cosmos. When we surrender to it and accept that whatever happens is for the best, it becomes less difficult to accept one's responsibilities in life and easier to fulfil them with conviction.
How did support from friends and family affect family dynamics? What was the most helpful thing that a family/friend did?
Preethi's friends are a great source of strength for us. If I have to leave her alone for even an hour or two and go somewhere, I feel restless and anxious. However, she has a few close friends who are so well-versed with her condition that I can go anywhere, even for a day, and feel at ease.
We have faced great struggle in trying to find quality caregivers, and are more often than not, struggling without any help. So, it is our friends and family who come forward to support us – everything, from transferring Preethi from the wheelchair to bed and vice versa, assisting us during travel and being there for her through the tough times – would just not be possible without our support system of loving friends and family.
This was well highlighted when I needed to have bypass surgery in 2011. Preethi had to be alone for more than a month, while I was in the hospital. I was undergoing a life-threatening surgery and she was out there, all alone, making all the decisions, but it was only possible to go through that tremendously testing time because of our friends and family. We had a big team of people spending time both at the hospital and with Preethi, taking care of all our essential needs, and supporting in many vital ways. We can never thank them enough or give them enough credit for the tremendously important role they play in our lives. I wish to express my deepest gratitude to each and every one of our friends and family for their constant support, in good times as well as bad.
Even today, with Soulfree supporting many hundreds of persons with spinal cord injury, the organisation runs without any paid employees. It is our volunteers, well-wishers and supporters who have made it possible for us to make such a positive impact in the lives of so many. It is our constant endeavour to ensure that we fulfil their faith in us and do as much as we can to achieve Soulfree's goals. Check out www.soulfree.org for more details about our work.
Preethi is a strong and sensitive person. How has that shaped your role as her mother? Did it change when Preethi's Dad passed away?
Preethi has always been strong and mature well beyond her years. Even as a child, we always involved her in all our decision-making and she often surprised us with her clarity of thought and sharp intellect. In the absence of her father, she has become stronger and better equipped at handling the world. When we suddenly lost him, it was a very big shock to both of us, and we didn't know how we would survive, because he was our connection with the outside world.
After his sudden death, we were left without any income or knowledge about how to conduct our activities. At that critical juncture, I made a decision that I would be both mother and father for Preethi from that moment, that she would never have to miss her father in any way.
We were naive and had learned many lessons. It was a very sharp learning curve for both of us, but we took the challenge as an opportunity and have become more self-reliant in the process.
What do you feel about the way Preethi has taken charge of her life and has founded as relevant an organisation as Soulfree?
The fact that Preethi has taken charge of her life and taken strong steps "to be the change" is maybe inspiring or amazing to people, but, to me, it seems like the most natural thing for her to do.
She started swimming at the age of three, and represented the state at national level championships. At the age of eight, she was the youngest ever to be included in the playing 11 of the Tamil Nadu senior women's cricket team, a record that remains unbroken to this day. In the 12th grade, she was chosen amongst the "Who's Who amongst America's Students", an honour which is bestowed upon only the top two percentile of the American student population. She has always been an achiever in every sense of the word.
I'm proud of the work we are doing through Soulfree, because we are able to positively impact the lives of so many who are struggling with spinal cord injury.
Even those who reach the heights of success in their personal and professional life rarely help others in need. I just pray that Preethi always has the blessings and support system she needs to continue her good work.
Anything that you wish to share with other mothers who are in a similar situation?
It is extremely important for us mothers to have compassion and empathy for the struggles of our children. If they were physically able to, they would never ask us or depend on us for anything. We should somehow find the strength within ourselves to look at the situation from their point of view. As hard as it may be sometimes, we must let go of all our doubts, insecurities, guilt, tiredness, personal desires and any other baggage to fulfil our duty. We must, at all costs, be there for them unconditionally. It is why we became mothers, is it not?
