Authors: Jamuna Rangachari
Dancing with Life (3 page)
Now for the first time in my life I was not keen to receive her and her family as a guest. For one, I did not know if I would be able to look after them or take them sightseeing as we had planned. I did not know if all the places we might visit would have a convenient and clean washroom, which had now become a necessity for me. Above all, I did not want my extended family to think that anything was wrong with me. I knew my aunt observed everything with a keen eye and was not fooled easily. I was not wrong.
My guests arrived and sure enough my aunt soon realized something was amiss. She knew of my love for cooking and that I would have taken a lot more interest in the kitchen, especially now that I had guests. Instead I delegated most of the work to my house help and hardly stepped into the kitchen. She noticed that I had stopped going for walks, something I enjoyed greatly and would not accompany them for trips within the city.
The only time I made an exception was for a visit to a local temple. It was the peak of summer and everyone in our group began to complain about walking barefoot on the burning pavement of the temple in the scorching heat. I, on the other hand, did not find it so uncomfortable and continued walking at more or less the same pace. This was because as I have mentioned earlier, the numbness that had spread to my legs (and feet) meant I couldn’t feel a thing. However, since it was a large temple I just could not cope with all the walking around as I was afraid I would lose my balance and fall. I spotted a bench and sat down next to an old woman. The others were a little ahead of me and I just signalled to them that I would stay there till they returned. After we returned home, my aunt told me she wanted to talk to me alone. I nodded and we went to a room while all others were resting. When she asked me what the problem was I said I was just tired and fatigue had begun to strike me more frequently than before. She was not completely convinced by my explanation, but left it at that.
During an extended weekend, an out-of-town trip to Lucknow with both families was planned with much excitement. There was no way I could have said no. During the long car drive I wore a sanitary napkin (I could not yet convince myself to buy adult diapers) and even packed a stash along with extra clothes in case of an emergency.
The trip was enjoyable for everyone except me, as my focus remained on finding a washroom that I could use in all the places we visited. I was not interested in sightseeing, taking photographs or shopping for souvenirs. Nor did I care to interact too much with my relatives as all my energy went into ensuring that I did not stumble or fall or create a scene in public. This was a tall order as many of the roads and places were not even human-friendly, let alone disabled-friendly.
All I could manage now were short walks on smooth surfaces. Basically, my problems with balance became apparent only during long walks. I made sure I stuck to short walks alone and then sat down on a bench or in a store, like I often did in Delhi. At this stage, almost everyone had understood that I could no longer walk long distances so they kept this in mind and made adjustments for me accordingly. It was as if they were travelling with an elderly relative. I did not know what to do to make them forget about me and my limitations and enjoy themselves; the purpose for which all of us had taken the trip in the first place. I actually wished the earth would open up and swallow me at times.
And the more I tried, the harder it became to hide the truth.
At the end of our time in Lucknow, my aunt knew something was seriously wrong. After a long discussion with my husband my aunt decided that she would extend her stay till all my medical tests were complete. That was easier said than done. My aunt and husband had to literally force me into going to the hospital and meeting a doctor.
At first, I went to a general physician at the Army Hospital Research and Referral in Delhi Cantonment, who put me through some routine tests and said everything seemed to be normal. After asking me some more questions, he referred me to the neurology department, where I first met Dr J.D. Mukherjee, a senior neurologist.
Instead of worrying about what medical condition the tests would reveal I listed, one by one, all the problems I had been experiencing. Dr Mukherjee heard all that I had to say and referred me to other medical departments for a battery of other tests.
After the results came in Dr Mukherjee called me to his cabin along with my husband. ‘Do you remember ever having a problem with your vision or suffering from inordinate fatigue?’ he asked. He nodded grimly after listening to my story. He then explained that I had MS and the previous incident where I had suddenly lost vision in one eye was an early indicator of the same disease, one that I should not have ignored. He also explained that the disease itself was extremely difficult to detect until certain commonly recognized symptoms peculiar to this disease showed up.
MS is also known as disseminated sclerosis or encephalomyelitis disseminata. The cause is not clear, but the underlying mechanism is thought to be either destruction by the immune system or failure of the myelin-producing cells. It is more common in women and the onset typically occurs in young adults. The cause of MS largely remains a mystery, even after nearly 150 years of its discovery. No cure has yet been found for the disease. French neurologist Jean-Martin Charcot (1825–1893) was the first person to recognize multiple sclerosis as a distinct disease in 1868.
In a sense, I was a classic case of MS, as I had been hit by this ailment in my prime. Dr Mukherjee understood my state of mind and spoke to me at length about the amount of research into MS that was going on around the world even as we were speaking. For some reason MS is particularly prevalent in the Western world; he said I could certainly expect some medical solution within my lifetime. MS is an intriguing disease, the cause and cure of which has not yet been found. Even though a cure has not been found yet, some medicines do exist that may help stall and manage the disease. Some people with MS have gone into permanent remission. Many others have led a long and independent life despite having been diagnosed with the disease. Dr Mukherjee advised me that in order to prevent recurrence, the only thing I would need to do was take care to not add any stress into your life. ‘As a writer, you should continue to be productive and not despair. Continue to read and write as many positive articles and books as you can. Visit as many places as you wish to and do not let this disease deter you in any way,’ he said, before prescribing some medicines. He asked me to follow his instructions and assured me he would never prolong the medication, but would make me go off it as soon as possible. This he did after one month had passed, tapering off the dosage.
At this stage there were a couple of injections that I also took, one of them being Prednisone. After one month of the injections and medicines I started feeling marginally better. My balance improved though the urgency of needing to visit the washroom remained more or less the same.
I met Dr Mukherjee again after I had finished taking the course of medicines and injections he had prescribed. He told me that my condition could be managed even better now. That gave me immense hope.
Over time in the process of counselling me and my husband Dr Mukherjee became a trusted friend and mentor. He wished us luck and said he knew that we as a couple had the mettle to fight it out. As he knew that my husband had a transferable job he assured me that even if I left the city he was only a phone call away. Stress was my biggest enemy, he repeated. I had to learn to make an effort to stay calm and positive no matter what the situation.
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(Source:
http://www.nhs.uk
)
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Spastics Society of India is now known as ADAPT – Able Disabled All People Together.
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DISEASE IS SOMETHING THAT AFFECTS NOT JUST
the patient but one’s close friends and family. Everyone who knew me was shocked to discover that I had been diagnosed with a disease that was not only incurable, but that they had never even heard of before.
My aunt Vijaya in particular was extremely disturbed when she found out and began asking all her friends and relatives what could be done to find a solution. Other relatives were upset as well and began calling often just to make sure I was fine. A cousin’s father knew a well-known neurologist in Chennai called Dr Ganapathy and promised to arrange an appointment for me if and when I came to Chennai.
But I had decided to visit doctors in Delhi instead of going to Chennai for treatment, away from my children and husband. In a short while, this disease had become a serious issue of discussion in not just my aunt’s family but even their friends circle. Many cousins, aunts and uncles and even family friends kept calling and asking me if I was fine, as if I was about to collapse any moment. Many of them also suggested various temples, churches, mosques and gurudwaras I could visit, prayers I could recite and fasts I could keep in order to placate the Gods and ensure my health problems went away. Did all this concern and the attention tire me? To be honest, yes.
None of it made much sense and I would find the constant free advice, especially on how I needed to remain positive, irritating.
There were many people who said the ailment would only go away if I learnt to think positively and trusted God completely. Did that mean I had attracted the disease because I was a negative person or irreligious? I knew for sure that I definitely did not believe in a God who forced people to have faith in him or her by making them suffer. I had no energy to tell all these people off or explain my personal views but as time went by found it was becoming more and more difficult to answer various queries from several different quarters. I knew it was all concern borne out of love, but what could I do to make them feel better? I wished I could have told them something concrete, but when I myself didn’t know what would happen next, how could I make anyone feel better?
I have always believed in God and earlier before the diagnosis had prayed and chanted on a regular basis. But now, under this onslaught of religious advice, I found my daily prayers had become more mechanical and lacking in energy. In fact, I now felt filled with anger and self-pity, wondering why the universe had decided to subject me to such a strange ailment so early on in life. I had to put an end to this drama. I definitely did not want my husband, or my children, to start obsessing about MS as well. The solution I found was to stop answering most, if not all, phone calls from my relatives and well-meaning friends. Within time they gradually came around to the idea that I did not want to make MS the centre of my existence. While denial is harmful, obsessing over any kind of disease is also equally, if not more, harmful. I told my well-wishers there were other things to talk about; despite my disease life went on all around me and that was what I would like to focus on.
During these difficult times I often thought of Amma, my late mother-in-law. She had married Appa after she had already been diagnosed with rheumatoid arthritis. It is said that someone asked him to go and ‘see’ her as a prospective partner. After one meeting Appa told his father that he liked Amma, and his father gave him permission to marry her. As far as the ailment was concerned, they did not make a big deal about it, as they thought it was something that could happen to anyone at any time even after marriage. Amma went on to give birth to nine children, brought them all up and was a mother figure even to her sisters and brothers-in-law. Through it all Appa ensured he took good care of Amma and was attentive to all her needs. In later life Amma developed a heart condition and was advised by many not to even step out of the house or give any strain to her body. As evidence they cited the huge number of people they knew who had suffered due to heart problems, and now needed extra care. My mother-in-law, brave and independent till the very end, never took any of the seriously. Not only did she live a full and inspiring life, she played more with my children than my husband and I did. She visited all the places she was interested in, met all the people she loved, and even learnt all the things she was interested in. Even the doctors were inspired by her. She did consult them but never gave them complete control over her life. She listened primarily to her own body and its wisdom.
Could she have done all of this if she had been obsessed with her disease? Or remained obsessed with her condition as a patient or sufferer? When I thought about Amma I instantly felt better and knew my husband Ranga, like Appa, would never let me down and always do the best for me and the children.
One of the biggest challenges I faced soon after my diagnosis was dealing with the barrage of information available on MS and trying to sift facts from falsehoods. The Internet, of course, proved to be a powerful resource. Instead of saying ‘I don’t know’, we all just ‘Google’ it. I had already done quite a bit of reading about MS on the Internet but slowly this became a regular habit. Without understanding a lot of what I was reading I would scroll through page after page of information on the disease and read all I could about the latest developments in the world of research and treatment. Like Pandora’s Box there was always some new nugget of information available on the Internet. If it was not a list of new symptoms or triggers I should be worried about I would find new case studies and testimonials from patients who had found a miracle diet or therapy or treatment at some hospital across the globe and now wanted to share the good news with everyone.