Dancing with Life (4 page)

Thanks to my Internet research, I began examining my teeth, vision and speech on a regular basis in order to monitor whether my disease was getting worse. Whenever I was alone, I walked forward, backward and in a zigzag manner, as if I was trying to prove a point about my co-ordination and balance. I kept thinking and hoping that if I continued keeping a strict check and measured my progress I could treat myself.

At this point, many people had told me about the work of a certain hospital or doctor. Several friends even got me appointments with various specialists, but I didn’t see the point of contacting a specialist for a disease that has no known cure. I knew MS affects each person differently, so what was the point of going from one doctor to another, when I was already in the good hands of Dr Mukherjee?

Meeting several doctors of the same discipline, I knew, would only confuse me and perhaps only add extra stress because some doctors tend to talk excessively about all that can go wrong.

Over time I learnt how to accept what my friends and well-wishers had to say politely and ignore the many recommendations they would try to make.

What many people don’t realize is that MS is a disease with a variety of symptoms. While some patients find it difficult to walk, others suffer from sexual dysfunction or speech issues or a lack of bladder and bowel control, while still others start losing their eyesight. Again, the degree of treatment varies from person to person. While the typical classification is of relapsing/remitting or progressive MS. Relapsing/remitting is one which the doctors say occurs only for a short duration. However patients recover after an attack. Progressive MS is a category where patients keep getting worse as time progresses. My doctor told me that I had the relapsing/ remitting kind of MS.

Treatments attempt to return function after an attack, prevent new attacks and prevent disability. This again works for some people and not for others. Scientists are still trying to find ways and means to prevent further relapses but as of now, the medication available in not entirely effective. Sadly I discovered that many people who spoke with authority about the disease were just regurgitating information they had picked up from the Internet.

In reality, because of half-baked discussions all over the media and the Internet, we all know much more about various diseases than we need to. Rather than helping us this causes even more stress and worry. It was mainly because of this that I put an end to the ‘fast and furious’ Internet searches and the main point of reference for me remained, and still is, my first neurologist Dr Mukherjee.

Once I got off the Internet, I found I had more time to go out and soon became used to people staring at me as I walked unsteadily on my feet. Many a time I could hear people whispering and commenting openly about the way I walked. Despite this, I carried on and tried to walk as much as I could each day; stopping often to sit on a bench, or even to visit a nearby shop to look at people and passersby. Anything that could divert my mind to issues other than my state of health.

Another funny development was I had started visiting malls to buy even the most basic of things as malls always provided easy access to clean washrooms. This reassured me. To justify my frequent visits to the malls, I started telling people that I preferred to buy from stores that sold only branded products as it meant value for money.

As I was unable to climb all the stairs in my society building I tried taking the stairs from the first floor to the ground floor. Basically, common sense told me that if I gave up walking altogether, I would never progress. Many neighbours observed me taking the lift to the first floor and not the ground floor and wondered what my problem was. In fact, one lady even asked me if I considered taking the lift to the first floor ‘lucky’. I naturally did not know how to answer this illogical question, but surely people must have wondered about me and my strange behaviour.

While people were wondering about me, I had a few questions of my own, the main one being, Why me? While a part of me was engulfed by self-pity another half was busy trying to see if I could go back in time and locate the trigger or the reason I had contracted this disease. I had always followed a clean lifestyle which meant a complete absence of nicotine and alcohol. Nor had I ever met with an accident of a serious kind. How or why then did I get Multiple Sclerosis?

During my long hours of research I learned that MS was once considered a ‘white man’s disease’. This was because it was a condition predominately found in temperate latitudes and a majority of its carriers resided in the western hemisphere. The disease is most common in Europe, North America, Australia and New Zealand and those areas north of forty degrees latitude have a higher occurrence than those around the equator.

I naturally wondered about this. I have a very ‘Indian’ complexion (read wheatish) but in the maternal branch of my family tree, (especially my maternal grandmother), almost everyone is very fair and some of them even have brown eyes, like Europeans. Could it be that the gene of a White (Caucasian) forefather who had probably had an illicit relationship with one of my ancestors during the Colonial era have travelled into my own genetic make-up? This was yet another one of those strange thoughts that occurred to me after yet another day of research on the Internet.

Lies, damned lies and statistics, is a phrase describing the persuasive power of numbers, often in a negative manner. I was interested in trying to find out how many people in India and across the world had been affected with MS. But as you know mere numbers (without the background story of the person affected) can be misleading. Actually, in any area of life, I needed to remember that statistics were mere numbers and tools of analysis and nothing more.

In India, very few people have access to proper medical facilities. When even basic first aid is not taken care of, how many people would be going to labs for sophisticated tests like the ones that are needed to detect MS? Whether or not it is because of the lack of these facilities, or because of the attitude of people, the Indian psyche does not support medical tests, except for the bare minimum or the extremely necessary. Rural women try to avoid visiting hospitals, if they can. Most Indian families don’t go for regular eye tests. Blood tests and even routine blood pressure check-ups rarely happen. Hadn’t I myself postponed going to the doctor despite having access to the best hospitals and a supportive family?

In a disease like MS, in which even the symptoms are so confusing, many people may have lived with MS for years without even knowing they have the disease. Which is why I have serious doubts about the official figures that are available for the number of people who have MS in India.

Another common scenario I have seen is that people don’t talk or share the results of a diagnosis with others. Again, this is much more prevalent among women than men. Once diagnosed many people try to hide their ailments for a variety of reasons such as the fear of not being able to get married if they reveal their diagnosis to anyone. And of course those who are married try to hide it (like me) for the fear of disrupting their family life.

In earlier times, whenever one wasn’t feeling well, all we used to do was visit a local doctor, preferably one known to the family. The patient would then dutifully follow the doctor’s instructions and advice. The common man hardly had any knowledge about various ailments and their probable causes or the possible side-effects of certain medicines. The situation today is the exact opposite. We feel as if we know everything there is to know about every ailment and disease under the sun. This is partly thanks to the amount of content on health and lifestyle published by popular media and also the Internet.

While I never went to the extent of taking medicine I had found listed as a cure on the Internet, I did do one foolish thing. I had noticed the many discussions on message boards about MS being caused by Vitamin D deficiency and the lack of the fatty acid, Omega 3, in the body. Since I was a vegetarian eating fish, which is the best source of Omega 3, was completely out of the question. So I focused instead on my lack of Vitamin D. Despite having lived in hot and humid zones all my life, be it in India or in Zambia (Africa), I thought I needed to get a little more sunlight. Maybe this was the simple answer to all my problems. I had seen many people sitting out on their verandah and basking in the sunlight of Delhi winters. The flat that I lived in then did not have too much sunlight, so I went out and sat in the sun even during the scorching heat of Delhi summers. An elderly couple, noticed me and came to my house one evening to advise me to stop my sun worship lest I end up with a sunstroke.

After I had accepted that MS was now a part of my life, I thanked God that I was fortunate to have a job that was not physically demanding as it allowed me to continue working and remain productive. Call it determination or foolhardiness, I always tried to travel in local trains, buses, and went to places I could have avoided while reporting for my magazine. This was my way of trying to prove that I could lead as complete a life as anybody else.

As far as public transport was concerned, I tried to always use the starting point of routes as the time given to board at intermediate points was not enough for me. Once, I boarded a bus at the starting point. At the next stop, I noticed a young man with mobility issues trying to board even as the bus driver, conductor and passengers just looked on without making any move to help. In fact, many of the passengers, made a hue and cry about how their busy schedule had being hampered because they had to wait a few extra minutes for this ‘physically unfit man’ to board.

This incident left me shocked by the insensitivity of human beings and also acutely aware of how as a nation we have no empathy towards those that are physically or mentally challenged. There are always exceptions to this rule however and many kind, good-hearted people are doing their bit to make a change but government systems were and are still abysmally insufficient. Many official programmes and initiatives that would help to make life easier for them are yet to be put in place. It’s just a simple thing but even in 2015 no arrangements have been made in buses or trains for people with mobility issues to board easily. In most public places there is an absence of lifts nor are there separate routes for the physically or mentally challenged at railway stations and airports.

India has many challenges but finding oneself alone anywhere is certainly not one of them. No matter where I went, I was surrounded by people. When I found it difficult to climb out of buses or trains, people would stare at me openly with pity while others would ask why I had ventured out alone when I was clearly not feeling too well. As I was still a young woman, many people could not understand how I could suffer from mobility issues; many others assumed I must have met with an accident which is why I wasn’t able to walk properly.

Fortunately, I also always found people who gave me a helping hand when I needed it the most. For instance, many people have allowed me priority access to autos and many auto drivers have gone out of their way to drop me right outside my doorstep. Some of them have even helped to carry bags of fruits or vegetables inside, without me even having to ask.

Once, I took an auto to meet someone for an interview in a locality that was a bit cut off and did not have regular vehicles plying there. The driver asked me how long I expected to take. When I told him it would be probably half an hour, he, on his own, decided to wait for me because, according to him, I would have found it difficult to find an auto or taxi to take me back. He dropped me at my house and did not even ask for extra payment. At times like these I feel there is no disease that love and a little help can’t beat.

I also had many friends who quietly lent their support by asking if I needed something when they went shopping and some who tried walking with me at my slow pace. Many suggested places where I could get comfortable footwear that would make walking more comfortable while others suggested healthy food options to boost my metabolism and immunity.

I knew I needed to get better on handling stress on my own though. I did not know if I would become better or worse but I had to think of things that I could still do so that I was able to make the most of whatever I had left. In a sense, the ailment made me even more conscious of using my time as effectively as possible. I made a table listing what I could and could not do, and how I could learn to handle the things that I was having difficulty with on my own.
(see Table on next page.)

Table

Looking at these issues objectively made me realize that the disease is not as life changing as it is sometimes made out to be. Most of the issues seemed to be something I could handle. Here, I do not wish to suggest that MS is a minor ailment. However, one has to learn to accept whatever cards we are dealt with grace and equanimity. I also made a list of people I knew I could always rely on, no matter what the situation. That list was impressively long. I realized that I was extremely fortunate to have so many people who genuinely cared for my well-being. It took me a while to understand that a disease is a challenge, not a death sentence. It is only once I learnt to deal with the limitations and accept them in totality that I was able to conquer stress and self-pity. I vowed to continue writing to the best of my ability, remain as physically active as possible and keep myself motivated and inspired by reading about people who overcame the worst of situations through sheer faith and force of character.