#SharetoCare Series with Meenu Chopra

The Breathing Rose

                                                                             Combating a life-threatening illness

I still remember the day when a young woman of Indian origin viz. Vanika Kapoor walked into my cabin; limping while walking. Her face reflected a medley of emotions with a deep sadness in her wandering eyes or perhaps, as a Psychotherapist, it was easy for me to read her instantly!

Vanika was suffering from MND (Motor Neuron Disease)/ALS (Amyotrophic Lateral Sclerosis), a progressive autoimmune disorder. This fatal ailment, to date, has no cure. It ruins the human body in different stages. What starts as a muscle breakdown in arms and hand, advances to a foot drop affecting the mobility of the patient. This is followed by slurred speech, poor swallowing and finally decreased lung capacity. Further stages are very critical and disastrous for a patient. Normally MND patients survive for 2-5 years; a few are said to have lived for not more than 10 years and very rarely a few in a million, recover to lead a normal life, enough to be called a miracle.

When Vanika visited me, she was 40 years old. I went through her reports and made a synopsis of her treatment so far in the US and now in India. I found it had been 2.5 years since she was diagnosed with MND. Presently at stage 3, she walked using a brace, had lost muscular strength of her left side and her words didn’t enunciate clearly. When I first saw her, instantly the image of Stephen Hawkins scrolled in front of my eyes, as until now, he was the only one who had seen suffering from this fatal disease, surviving and carrying on with life astonishingly. Vanika was the first of her kind case for me, equally challenging and engaging.

Vanika Kapoor adorned a versatile and graceful persona. Her smile was enough to light up a dull life. She looked amazing in a long gown, open long tresses; simple yet elegant. As she spoke, I noticed she had a slurred speech and I was unable to understand even a single word. Initially, it seemed a difficult situation. I thought as to how would I counsel Vanika without communication? As if she read my mind, she promptly used a speech app to make me hear what she wanted to explain and kept expressing herself by writing too. This was for the first time that I heard my client via a voice modulation app.

I requested her to give me a day to study her reports and see how well I could help her out. Meanwhile, I asked Vanika to share about her life through an email so that I could know her better as a person, which would form the base for my therapies. Vanika sent me a long note the same evening, which reads as follows:

I was born in India and studied in The Lawrence School, Sanawar. My parents shifted to get settled in the US and left me and my younger brother with our grandparents in Shimla. Although I was happy being here, I longed for parental love. They would visit us once a year. I hated to be in a boarding school and experienced an empty nest syndrome. As communication was through landline phones those days, I yearned to hear mom-dad when they would call every weekend at the hostel. However, I waited desperately to reunite with them in the US.
Finally, it took my parents almost 8 years to settle at New Jersey and at a position to take us along. I left India when I was 16 years old. Once my brother and I went to the US, I missed my grandparents in Shimla, and also my love for the hills that had engraved deep into my consciousness. I found it challenging to adjust to American culture, and consequently, loneliness gripped.
My relation with my parents has been of respect, but we could never have a very open and communicative bond. The separation and the reunion with our parents could never fill in the childhood void. This was how my brother and I grew. Missing our parents during school days and not understanding the sacrifice made by them for their respective careers. However, life moved on in the USA and after completing my MS from the University of Illinois, I married one of my classmates, Yash.

As a therapist, however, I could see deep remorse and unspoken resentment buried inside Vanika for years, for her parents. Being mature, she accepted the fact that it was the long years of circumstantial separation due to which it was difficult to bridge up the gap among them. Hence, no one was to be blamed.

I continued to read:
Yash and I planned our first child after 5 years of our marriage when both of us were sure of including a new life within us. Soon, we were blessed with a daughter, whom we lovingly named Vanya. For us, our daughter is our world. She is now 10 years old. A very calm, poised and mature child. We have tried to imbibe in her our perfect Indian roots.

My life in the US is just like any woman in India. I help Yash in his IT Firm as we both are IT, engineers. I manage home and office and have made sure that Vanya’s childhood isn’t sacrificed in the pursuit of our career goals. With this thing in mind, I have planned my professional and personal life. I didn’t want to give Vanya a childhood where either she goes to daycare or enters an empty home. In short, I have always believed having her in our life was our decision and our professional life should not interfere in my child’s growing years. I have had a childhood without much physical connection with my parents, I know how a child suffers because of this emotionally. Hence, for Yash and me, Vanya has always been our priority. Our meetings, our business commitments have always been aligned with Vanya’s routine. We have always made sure that either of us is at home always for Vanya. In emergencies, Vanya stays with my mom and dad who live very close by. This has been my life so far.

However, A couple of years back, while we were having a big celebration at my parents’ 50th anniversary in New Jersey, I felt as if I was losing my left-hand grip and finding a challenge to dance to the music. I ignored thinking that in planning this event I have been running so much with less sleep, so maybe because of exertion, I am feeling numbness. Hence, I ignored it. But in the coming days, this numbness continued and I felt the need to consult a neuro-surgeon. Thereupon, a series of tests were done. I still remember mom and I had gone for the consultation and the doctor announced the dreadful challenge I had to fight with. The very name MND shook me completely. I had heard about it, in fact, who hasn’t seen Stephen Hawkins? I felt, at that moment, my completely beautiful life crashing. Mom consoled me and tried to gather strength that we will come out of it. Everyone waited at home eagerly to hear what the doctor had diagnosed. This news at home shook everyone to the core. Sitting in the living room, there was dead silence, sobbing and no one was able to console anyone. My parents, Yash and my brother, all were sad and disappointed. We kept this news from Vanya as she was too young to handle it.

The neurosurgeon who diagnosed me with MND/ALS declared on my face that I will die within three years, and this happens to be the end of my 2nd year. I read everything available on the internet. The information wasn’t assuring. I often asked God, “Why Me?” I witnessed in me a fragile person that I never knew existed. For the first time, I felt how blissful and abundant it is to be healthy. We consulted the best neuro-surgeons in the US; a few were assuring, a few simply spoke of no scope of recovery. Yet my family kept trying to consult doctors in every country where a possible treatment could have pulled me out from ALS. Medication has so far shown no signs of improvement. My hands and feet are losing strength and my speech is deteriorating day by day. My expression is gone; my words are lost; my world is grim and I often cry to think about how young and dependent Vanya is on me. It is so early to have a fatal illness like this. Wish I could turn back the clock and get hold of my envious past.

Anyway, after multiple treatments in the US for over a year, we came across a senior neuro-surgeon in Boston. He advised an IV treatment for which I would either have to stay in Singapore or India, as the law for the similar treatment awaited approval in the US and could take over a year. The undisputable choice was to return back home. My grandparents are in Shimla and everything could be easily managed. But the decision wasn’t that easy. I would have to live here for at least 6 months without Vanya and Yash. While my mom and dad would look after Vanya, Yash would be shuttling between both the countries and managing our business, my illness and Vanya’s school, all alone.

The email didn’t end here. Vanika disclosed that there was one reason she flew to India and made the decision instantly. It was a letter from Vanya encouraging her to head for recovery. She shared it with me and I would like to reproduce the same for my readers too. It read:

Dear Ma,
I remember the day you buttoned up my jumper trying to use both of your hands, I saw your left hand unmoving. That day you hugged me as usual, but I felt you were using your right side more. Ma, within months I started missing the little stories of your childhood. I could feel your words weren’t coming out. Nonetheless, I felt the warmth when you patted my forehead. I am sorry but I overheard about your health when all of you were sitting in the living room thinking that I had slept. Ma, that day I came to know about your problem and asked dad. He told me everything and we kept it a secret. Sorry, Ma, for having done that. I know you will have to go to India without me. I will miss your tickle that wakes me up in the morning, I love when you scold me not to speak while brushing, I run around joyfully when you make me ready and laugh when you feel exhausted. I eagerly wait to come back home to hug you and chat endlessly with my cooked-up stories. I keep staring with one eye when you would scold me to drop off my gadgets and study. I have seen you silently crying, thinking that I am asleep, but I know, my mom is the bravest. Please go to India. We all know that you will recover soon. I promise to take care of myself. I love your voice that is so magical. I have always loved you- although you say it to me, you are indeed my breathing rose, Ma. Please come back soon.
Love,
Vanya.
The text ended with a note that read:

I am here for Vanya, my lifeline. I know I can’t let MND take over me. It’s too early to leave the world, my daughter needs me. I want to live for her and be by her side until she grows up. I am all set to fight it and bounce back to my healthy self. I hope we can go further.
Regards,
Vanika.

I replied
Dear Vanika,
Together we shall witness a miracle and show the world that a positive mind can defeat what’s destined. I will endeavor that a child’s hope and faith remain undeterred. I am sure you will soon be an inspiration for many with similar ailments fighting all across the world. You will be the hope for those who are lying for years, bedridden-silent. We shall light a candle in the wind!
Come at 11 AM tomorrow. Waiting!
Much Love.
It was a new day for both of us. I was about to meet a woman who came as a stranger a day before, but after that one email, I felt, we had an eternal bond. I greeted Vanika. Her body language was confident. From that moment, there was no looking back. We never used her diary or the speech app for communication, thereafter. Perhaps, it is rightly said, when hearts connect, thoughts travel faster than words!

Meanwhile, I started with her yoga and meditation therapies followed by daily counseling. I sometimes wondered at the intensity and dedication with which Vanika would hop from one doctor to another, trying every possible treatment and in between finding time to chat with Vanya and Yash.

Every day we would meet. For ten days when her IV was going on, she would cover her arm with a scarf and come. She would excitingly show Vanya’s messages as if each word of the kid added nectar to her medications. Vanika stayed here for 6 months. We never missed meeting each other even a single day. My work was keeping her emotionally balanced and changing the whole composition of her unconscious mind such that she could reverse her disease that she had unmindfully put many years ago in her thoughts. My therapies, yoga, and meditation kept going along with her IV, physiotherapy and speech therapy. We all worked as a team. Occasionally, we would go for a cup of coffee outside. We became very good friends. She came like a cool breeze in my professional life. I would sometimes see the sadness in her eyes, but Vanya kept her going. It was magical to see how a little child had such healing powers and an undaunted faith to see her mother recover and witness her healthy self.

Meanwhile, 6 months passed and the approval for the IV therapy to be administered in the US hospitals came. It was time for Vanika to return back home. That was hopeful news. Vanika came with a splash of happiness to inform me. More than the treatment, she was excited to reunite with her family, especially her doting daughter, Vanya, who had kept her going during the last six months through her regular calls, voice messages, and videos. She went back carrying a bag of endless hope to continue with her treatments in the US and fight back to restart a new chapter of her life.

For the first time in my professional career, I too got attached to Vanika; I just don’t know how? It seemed we both had some karmic connection. She was never my patient. She became a dear friend. I still remember before leaving, we had dinner together at her home. I knew I would not meet her again soon. Sadness loomed around us yet I was happy to see her bags packed and the excitement in her eyes to return home. It took some time for me to work on other patients after she went. We bonded like sisters, though we kept our connection over WhatsApp.

Vanika is the finest person I have ever met so far. I often felt such a beautiful person deserves to live long. Having known Vanika has been an enriching experience. Patients like her make us feel modest and grounded. They break our false egos and confirm that we are just a source to cure them. The real work is being done by the creator who manifests in each soul. And the rest, by powerful women like Vanika who have the will to live and face life’s challenges with undeterred faith and optimism.

Vanika reached her home in New Jersey. It was Christmas at their home. A reunion followed by a beautiful Indian family that nurtured their life with unconditional love for each other.
Vanika continued with my therapies in the US along with her other treatments. It took over 3.5 years for Vanika to flush out the MND from her body completely. Normally, MND patients either succumb to the ailment within 5 years or become bed-ridden in hospitals and palliative cares. Vanika is one of the rarest cases one can come across. Her recovery in such a short time is a miracle in medical science with reasons unknown and is a matter of research. I can’t say what worked for Vanika. Was it her destiny, the medications, the meditations, the power of faith, the prayers, or was it a promise of an ailing mother to her 10 years old daughter that she would be with her ‘alive’ and ‘healthy’?

Today, Vanika is an inspiration for many. She rejected to accept her vegetative state and reinstated her mind-body connection remarkably. Vanika visits several MND/ALS patients, speaks with those bed-ridden and helps them fight the illness. It is easy for her to connect with them; she has experienced similar emotional turmoil and physical pain.

Vanika Kapoor has been one case that deeply touched me. I regard her as a perfect example of a woman who proved that the strong will to live, coupled with a positive attitude can defeat the worst health challenges, capable enough to change the human anatomy.

The driveway at my home has a bed of roses. While I walk in after seeing so much ill health around, the mild fragrance of the red wine roses, the tranquil whites, the blushing pinks, the hopeful yellows and the vibrant orange immerse deep within. At night when I walk with a cup of coffee in my hand and look up, I feel, the moon fills my sky in India; the sun in the US; but the breathing roses spread fragrance all over; in my garden and at Vanika’s home far away. And I silently pray, may God bless people like Vanika who have the power to bounce back and draw the thin line between life and death. May each collapsed patient find a breathing rose to lift them back from chronic ailments and survive; just like the duo – Vanika and Vanya did!

Editor’s Note:

The use of love is to heal. When it flows without effort from the depth of the self, love creates health. – Deepak Chopra

I know that every thought is energy and whether it is positive or negative, it starts affecting us – mentally and physically. This is the first time I am reading, how adversely thoughts and fears can affect us.
But the human mind is most powerful and it can transform the world. Most importantly, it can transform the self.

Dear Meenu,
I am going to read this story every time I am feeling low. We tend to forget that we have the power to heal and your story helped us remember it. Faith and surrender are two important forces and you ensured Vanika had them both during the entire process.
Thank you for sharing.
Lots of love.

A powerful story of how someone reversed a fatal disease. This is a true example of the phrase, ‘Mind over matter.’

We would love to hear your views, don’t forget to write them in the comments.
If you have stories that you wish to share, you could do so here –https://gurgaonmoms.com/sharetocare/