My Mother Has Multiple Sclerosis: She Needs Our Support, Not Pity

(Photo courtesy: Erum Gour/The Quint)

A family that fights Multiple Sclerosis together.

Some days in your life simply don’t fade out of memory. You keep replaying them, thinking - what if they had played out differently. Honestly, there is no end to the ‘what ifs.’ One such day was in 2006, when my mother's minor fall in the market, ultimately led to her being diagnosed with Multiple Sclerosis (MS).

For those of you unaware of the disease, let me try and explain it in simple terms.

Multiple Sclerosis is a chronic disease that affects the Central Nervous System (CNS), especially the brain, spinal cord, and the optic nerves. It’s a condition in which the immune system mistakenly attacks healthy tissues in the CNS.

Women are more prone to be diagnosed with MS than men. (Photo: iStockphoto)

In the last thirteen years, I have met very few people who are aware of the existence of this disease. Often to prevent a tedious explanation, I have tried telling people who don't know what it is, that it’s the same disease that Vidya Balan had in the movie Guru. However, they are mostly alien to that as well. Recently American actor Selma Blair spoke about her diagnosis, starting a wider conversation around the subject.

Putting Together the Jigsaw Puzzle

My mother, and in turn our family, has been battling Multiple Sclerosis every single day for the past thirteen years. Since the incident, our lives have become divided into two phases: Pre-MS and Post-MS.

What has been a disturbing revelation is that even today the disease remains a puzzle for top doctors around the world.

Though research about MS has been ongoing for several years now, the cure and the cause of MS still remains unknown. The progression and the attacks can be brought under control through medical treatment.

Just like any other chronic disease, it changes the everyday lives of those suffering from it, and that is exactly what my mother, and our family as extension has experienced.

Trigger and Diagnosis

A minor fall in the market started it all. A few bruises that she sustained we treated with some antiseptic and a pain killer at home.

Within a few days, my mother started experiencing numbness on the right side of her body, which heightened so much that it became difficult for her to even consume water. We rushed her to our physician who in turn referred us to a neurosurgeon. My mother was diagnosed with Stage 2 Multiple Sclerosis.

Doctor visits, injections and medicines became the usual.(Photo: iStockphoto)

Understanding Your Body

Multiple Sclerosis falls under the category of rare diseases; only 8-9 persons per 1,00,000 of the population are diagnosed with it every year in India. Its symptoms also vary from patient to patient and no single pattern can be detected among MS patients.

As my mother aged, the MS started gradually progressing. Along with numbness in her body, her vision too started getting blurry, and her immunity to other diseases started reducing as well. Slowly, MS started impacting her ability to walk, since coordination between her legs no longer came naturally.

From the once chirpy and talkative person, she transformed into someone who remained quiet and kept things to herself. I could feel her drift away. She also started showing signs of depression and became severely under-confident.

We knew how important it was for her to feel good about herself and not lose her personality. We encouraged her to go out of the house, interact with more people, especially with those who have a similar condition. Before anyone else, it was important for her to understand what was happening to her body and how other people with similar condition led their lives. She tried out some sessions held by the Multiple Sclerosis Society of India (MSSI), but she ultimately found comfort in the support and love of her family.

The past few years have not been easy. Apart from frequent visit to doctors, she has to take injections on a weekly basis.

I can’t even begin to imagine the kind of pain she has gone through all these years. Still every time I ask her, “How are you feeling today?”, she smiles and says, “I am good.”

Support, Not Pity

The reality of living with this disease is something not many can comprehend but, from what I have learned from my experience, patients of chronic illnesses definitely don’t need our pity. What they need is support and love.

They don’t need to be reminded everyday about the things they can’t do. On the contrary, it's always helpful to give them a gentle push and acknowledge their every little success.

Tell them what they can do, not what they can not. (Photo courtesy: iStock)

There were times when my mother wouldn't step out of the house for weeks or even months at a stretch. She thought that since her legs did not support her, there was no point in making any contact with the outside world. But with gentle encouragement from us and the baby steps, she now wants to go out every other day for at least an hour or two.

Since she isn’t able to roam around in markets or do window shopping, online retailers and shopping websites have occupied a place in her daily schedule.

I won't say that life now is the same as it was before MS. There are good and bad days. But my mother knows that she is not alone in her fight against Multiple Sclerosis; her entire family is with her. It’s from her family that she draws her confidence.