Rajan Talwar's book is not simply an individual's journey through the trials of living with Multiple Sclerosis. It is a discourse between a thinking, reflective being with his world. It is a discourse on life, not in any abstract fashion, but in the very real essence of living each day to its fullest. His sense of humour prevails even in his darkest moments of anger and despair, as he punctuates some of the most painful moments of his life with this humour. Every chapter contains a positive lesson from a negative circumstance. The question of self growth for the author is linked to the inexorable condition of the disease that holds him captive. Boustan Hirji - Dawson College Unique, self-told story of pain, courage and triumph. A candid account of the real turbulences of life. Informative of treatments that the medical profession considers 'Witchcraft' Passionately written. Refreshingly honest, open and sensitive. The author invites us to his world of MS and takes us on an intimate tour of his fears, hopes, despair, strengths. On this tour, we encounter our own innermost being; we find reflected in his world our own world. We find the echoes of our own questions, and we question our responses to the world we all live in. He provides us with the lens through which to view his world and we find that this lens is indeed a reflection of our own world. In this sense his world of MS is indeed our world and MS is then our metaphor for the calamities of our lives. This is one man's journey of coming to terms with his reality and it can only inspire us and help us to come to terms with our own reality. A must read for every thinking, feeling, and struggling person! Zeenat Shariff Aga Khan University
I Have Good News and Bad News
By Alnoor Rajan TalwarAuthorHouse
Copyright © 2010 Alnoor Rajan Talwar
All right reserved.ISBN: 978-1-4490-6648-2 Chapter One
Before I was diagnosed, this was my dream:
When I retire, I will wake early, go to mosque, meditate, and then, come home to nap. Waking around nine, I'll walk to the library, stopping at a coffee shop en route, and then spend my morning at the local library, exercising my mind. I may even fall asleep while reading.
I will then go for lunch to a nearby deli or park, followed by a walk to feed the ducks and then back home for some afternoon gardening, and finally it will be time for a shower and the evening prayer, where I will also meet with friends and acquaintances. Twice a week I will do voluntary work. After all, we have to give back to society what we have received. I am of the belief that we have to give in order to make room to receive.
That in itself is great news. Such noble thoughts!
The bad news - I have just been diagnosed with Multiple Sclerosis (MS). Where does this leave me? What of all my plans? What lies in my future?
The first days were filled with fatigue, shortness of breath, pain in my legs and ankles, walking with great difficulty with my mother or Michael (my business partner and now, my caregiver) helping me, and severe headaches, which I thought at that time, were caused by stress, worry and/or, the lack of eating.
My first appointment with the neurologist was both enlightening and distressing. In the lobby, I read the pamphlet describing symptoms of MS and realized I had eight out of ten of them. I knew even before the neurologist told me that I had this thing called MS.
MS? What was this MS?
According to the Answers.com Medical Encyclopedia, Multiple Sclerosis (MS) is a chronic auto-immune disorder affecting movement, sensation and bodily functions. It is caused by the destruction of the myelin insulation covering nerve fibers (neurons) in the central nervous system (brain and spinal cord). The brain and spinal cord nerves no longer communicate properly with other parts of the body and this can cause a wide variety of symptoms and can affect vision, balance, strength, sensation, coordination and bodily functions.
Researchers have yet to agree as to what causes MS. Some say it is genetic. Some point out environmental triggers. What is for sure is that it is an auto-immune disorder. It is a disease in which the body's own immune response attacks the central nervous system, almost as if the body becomes allergic to itself, leading to progressive physical and cognitive disability.
MS affects more than a quarter million people in the United States alone. Women are twice as likely to get MS as men. People of Northern European heritage are more likely to be affected than people of other racial backgrounds, and MS rates are higher in the United States, Canada and Northern Europe than in other parts of the world.
So where did I fit in this? I am neither Caucasian, nor a woman and no one in my family has ever had it. This was the first of many theories that made no sense to me.
The tests followed. I did badly. My co-ordination was out of sync, my balance was almost non-existent ("there goes my modeling career", I thought humorously), I was having occasional double-vision, and I was in great distress.
"Why me?" was a question I could have asked. But, I was in a form of denial. Not exactly denial, but a cloudy hazy form of numbness, not quite knowing what to think or how to behave. I do not know if it was disbelief or shock or both. It was almost like I was on some hallucinogenic drugs or alcohol to make me unaware of what was happening.
It may have been some hidden strength or some strange form of disguised acceptance that was helping me cope. Since there was nothing else I could do, I might as well accept it and do my best to cope and live with it. I am, after all, more realistic that I would like to believe. I think Pink Floyd's song lyrics became a reality for me. I was just 'comfortably numb'.
An MRI was the next step and I was told if I wanted it covered by OHIP (Ontario Heath Insurance Plan), I would have to wait for up to three to six months. My symptoms were getting worse. I was walking with great difficulty and getting more and more fatigued. We decided not to wait, and go to Buffalo and pay to get the MRI. We drove there on the Thursday before Easter.
The second appointment with the neurologist was discouraging.
He noticed my condition worsening. Things were suddenly happening faster. He said that the MRI was inconclusive. INCONCLUSIVE!!
That's the medical field for you. A trip to Buffalo, the nerve wrecking experience of being in an electronic coffin, US$ 600.00 later and the bloody test is inconclusive. Now I needed an MRI of the neck. Well why didn't they ask for it all in the first place? They could have done the MRI for my head and neck together, for the same price.
I remember when I used to be an employee; we had an explanation for the operating methods of the company I worked for (which will remain unnamed as I could not afford a law suit).
They wiped their backsides first, then took a dump and then complained of the skid marks.
Talk of doing things backwards, the long way, the wrong way, the costly way and then, it all had to re-done because it was not done right the first time.
To make a long story short, I had to wait less than two months before I finally got the MRI of the neck. I was not about to drive five hours to Buffalo and pay US$600.00 again!
The neurologist suggested some medication to ease the pain and discomfort and to regain some of the strength and manage the fatigue with a four-day program of a steroid drip ("There go my plans of joining the Olympics as a runner or a javelin thrower or even a professional gymnast", I thought sardonically).
The drip was to be followed by some medication that would cause ulcers, so there was a prescription for an antacid, which in turn would cause sleeplessness, so there was a prescription for sleeping tablets, to be taken only 'when necessary'.
Hmmmm....... Here was my chance to take the sleeping tablets with some wine, dress in a tuxedo, stumble down the stairs and have an 'accidental/intentional' death.
Two days after the steroid drip, my complexion was amazing, my energy level rose, the fatigue disappeared, I could walk normally again. I could get used to this.
"Give me more!"
Four days after the steroid drip, I was shaky again and my symptoms returned.
One evening I had to read a sermon at the mosque and I got emotional and almost cried but regained my composure and read the rest with some semblance of control.
This was apparently just the beginning of the medications - not for my Multiple Sclerosis, but for just the symptoms AND THE SIDE EFFECTS!
Oh these side effects! If the disease won't kill me, the side effects certainly will! Everything I was given had side effects which had to be countered with more medication. And this was only the beginning as they still did not know what I had!
Maybe I really should just take the sleeping tablets and end this before it actually starts.
No. That is something I could never bring myself to do. I could never resort to suicide. If this is happening and it is, then I intend to live through it with respect, strength, humility and composure. Composure? Did I say composure? I have been crying more and more. I have become highly irritable and this is just the...
