A Story of Grit and Resilience

Margaret Xavier was my student at the Notre Dame Junior College of Education — Bangalore. She kept in touch with me intermittently over the years. We chatted and shared experiences as we were both in the field of Education. At one time, Margaret even invited me to do a few episodes for a TV Channel on Career related issues.

And then there was silence, we lost touch with each other for many years. One fine day sometime in 2021 / 2022 (I forget when exactly) Margaret called. I was happy to hear her very cheerful, distinguishable voice. She shared her life storyafter Covid-19, a stroke and Balint’s Syndrome. Quite honestly, I did not understand what the syndrome was all about.

Then the book — ‘Neuropsychological Consequences of COVID-19: Life After Stroke and Balint’s Syndrome’ was published by Routledge. The book was authored by Jwala Narayanan, Anjana Xavier, Jonathan Evans, Narinder Kapur and Barbara Wilson.

I bought the book as it was Margaret’s story and was absolutely gobsmacked by all that I read. There were many lessons for me.

I called Margaret and asked her permission to write a blog on her story. I also told her that I would write it and forward it to her son and daughter to read out to her and for their approval. She readily agreed.

First things first — I have known Anjana as Margaret and I find it difficult to call her by any other name. In the book she is Anjana as that was what she was named by her parents.

Secondly, please do not stop reading due to a few technical terms — there are no substitutes for the terms.

It is important to know something about Margaret’s life before Covid-19 as it puts in perspective her character and personality which enabled her to face and cope with life after Covid-19 and its effects.

Margaret is a Bengali by origin and culture. She grew up in a lower middle-class home. Her mother was a disciplinarian and raised the 3 children with strong values. Studies were prioritized with an exposure to music, art and dance.

Margaret was sexually abused by a close relative for many years. Her complaints went unheard.

She eloped with Xavier after her 10th Board to escape from the sexual abuse and went to Thrissur in Kerala and lived in abject poverty with Xavier’s family. She later married Xavier. It was after her son Jimmy was born that the family moved to Mumbai, where Margaret’s parents lived.

She took up her studies where she had left off and completed a Masters in History.

Her daughter Gina was born during that stay in Mumbai. The family shifted to Bangalore. It was then I met her as she decided to get trained to be a teacher. She plunged right into the course. This training was to be her anchor — she taught, created curriculum and rose to be the Vice President of an international company that worked in the field of developing curricula for schools.

On the home front, things were not good. Margaret separated from Xavier for the sake of her children due to his lifestyle & habits.

Life moved on ……….

In the 3rd week of the Lockdown in 2020, Margaret contracted Covid-19 which rocked her seemingly normal life. Margaret’s symptoms were very severe and she was moved into the ICU the day she was diagnosed with Covid-19.

She suffered a stroke — in fact multiple strokes. This led to a number of deficits in her motor and cognitive abilities.

On May 9th 2020, Margaret was discharged and admitted to another hospital for neuro-rehabilitation, as she required medical intervention for a number of problems.

On discharge, Margaret’s family was told that the prognosis for her visual recovery was very poor. The family believed that she may not see again. However, while leaving the hospital, Margaret pointed out that her granddaughter’s toy was on the window sill. This surprised the family — Could she see, could she not? They sought help.

Margaret was referred to Jwala Narayanan a Consultant Neuropsychologist at the Annaswamy Mudaliar General Hospital and Manipal Hospitals, Bangalore India. It was then that she was diagnosed with Balint’s Syndrome — a rare syndrome.

In order to diagnose someone with Balint’s syndrome, one has to ensure that all 3 components described by Balint are present i.e.

1. Optic apraxia — the inability to voluntarily shift one’s gaze into the peripheral field.
2. Optic ataxia — the inability to localize things in space or reach out for the object accurately.
3. Simultanagnosia — the inability to process more than one visually presented object at a time.

If misdiagnosed the patient could be referred to services for the visually impaired.

Margaret is not blind. Margaret has Balint’s Syndrome which has affected her vision.

Here are a few lessons I learnt on reading the book –

1. There is a difference between Vision and Blindness. Chapter 7 of the book is titled, ‘What it means to be blind when you can see.’ Margaret says, simple activities that she could do without thinking were now so difficult: (i) Brushing her teeth — she can see the toothbrush but cannot reach out to pick it up; (ii) Serving herself food or the ability to drink a glass of water; (iii) Lighting the lamp in the pooja room; and (iv) Picking up a book. I could only imagine how difficult and frustrating every simple activity was.
2. In Margaret’s words — ‘My cognitive difficulties made me question and evaluate the meaning of attention and concentration.’ Margaret had through working with children understood that to children, paying attention was actually listening to instructions and following them. Margaret realized that to deal with her setbacks paying attention was not enough, she had to listen to instructions. If she did not listen carefully to the instructions, she would have trouble in executing the activity for e.g. wearing her T-shirt had to be broken down into one instruction at a time.
3. Margaret beautifully explains her understanding of emotions, as the motion or movement of feelings. After the stroke she found the movement difficult i.e. to shift from a stage of emotion to practicality and felt stuck in a state of intense emotion that influenced her behaviour and responses.
4. The importance of Goal negotiation for rehabilitation. Margaret was ambitious and determined. She was clear that her goals were to see again and to be able to walk again. She wanted to get out of the wheel chair and walk in a week. This needed negotiation to break it down and make a reasonable goal — like standing with support at the end of the week. Her recovery was broken down into stages. Margaret moved from a wheel chair to standing — then walking and now jogging around her apartment with someone accompanying her — accompanying her, not holding her hand. It all took months.
5. Margaret tackled her physical weaknesses with compelling thought. For e.g. Why do I need someone to squeeze the toothpaste onto the toothbrush when I have taught my children to do it as babies.
6. She realized the importance of practice and repetition. ‘Repetition is the source of my strength. Every ‘dot’ of movement was significant. A step was unfathomable.’
7. She did not like to use the term ‘loss’ of memory as it indicated doing something that she could not retrieve.
8. There are some words used in the book, that made me think — Simple words like –

• Preparation — which was understanding the purpose of an action to execute it correctly.
• Survivor — which included everything she had endured and emerged stronger with a redefined set of values and strengths.

In all of this one cannot but mention the role of her family — son, daughter-in-law, daughter, son-in-law, granddaughter and her sister — ‘The Big fat Indian Family of Therapists’ as Chapter 9 has been titled.

The entire team who supported her rehabilitation — physiatrists, physiotherapists and occupational therapists — not to forget the tremendous help and guidance she received from her neuropsychologist — Jwala Narayanan. I had never heard of ‘Cogworks’ even though it is just 10 minutes away from my home. It was here that Margaret received much of her therapy at Annaswamy Mudaliar General Hospital. Margaret also gained strength from Spiritual practices like meditation, breathing exercises and pranic healing.

Margaret has made such tremendous progress –

She is Grit

She is Resilience

She is Strength

She surrendered herself to her situation and with it came Acceptance.

Love you Margaret. God bless you and all who made your recovery possible.

I have probably got just 10% of the essence of this recovery. I almost gave up writing the blog as I wanted to fit in everything that touched me.

For those of you who are interested the book is available on Amazon.