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 beginning of everything - the symptoms the side-effects, severe mood swings and possible disability. I also have to look forward to probable hives and maybe even the loss of my boyish looks and a substantial weight gain so I can look like the Michelin Tire guy or the Pillsbury dough boy.
Despite all the care and concern that is shown by people around me, I am easily angered by it, and am quick to misunderstand the concern and take it to be some kind of condescending support.
"We are all here for you."
What exactly does this mean?
I cannot stand this kind of talk that someone may have heard in a movie or a psychology course on how to talk to the ill and the dying. I guess there is some discomfort in confronting that a loved one is diagnosed with a terminal or a debilitating illness, and the unease, upset and confusion caused by the illness may be the reasons for not knowing quite what to say.
I say, "Just be yourself and treat me as normal even if I am not. I do not need anybody to remind me that I should have strength. How do you think I am living through this, if not with some form of strength? And of course, do not forget, this is just the beginning. I have more, much more to look forward to!"
Now in retrospect, I think, it is hard for people to interact with someone who has been diagnosed with a terrible illness. How else can they communicate, if not with some form of irritating sympathy and what may seem like condescending support? It is not their fault. When I do not know how to react, how can they know how to react or how to behave with me?
I have good news and bad news. The good news is that I finally know what I have - some neurological disorder. My mood swings, my flaring temper, my falling down the stairs, and walking into walls, were first considered by my family doctor to be work stress and poor circulation.
The bad news is that the doctors still do not know if it is Multiple Sclerosis or Devic's Disease. More stress, more mood swings and more temper flare ups. What have I got myself into?
Chapter Two
My second day on the pills and they are a little hard on me. There is a bitter after-taste. They make me more irritable and grumpy and worst of all, I pee like an elephant.
This morning, I got up for meditation, sat (I cannot stand because of my lack of balance) on the toilet, urinated, cleaned myself, got up and started to wash my hands. I felt a warm sensation on my legs and looked down to see that I was still urinating. My pajama bottoms were soaked and except for the wetness and the warmth, I did not feel a thing! This was scary. What if this happened when I was outside or visiting someone's house or working or praying? My greatest fear is wetting myself in public or in bed. This was all happening too fast.
I normally take great pleasure and effort to make sure I am clean, decent and well groomed. Even though I do not wear expensive brand names or labels, I always ensue that I am well groomed. A personal accident would be devastating. I am highly depressed.
When is the neurologist going to actually start treating the Multiple Sclerosis? I guess, he has to first confirm that I actually have it.
* * *
I went to a funeral today. The Ismaili Muslim funerals are quite involved and as the coffin leaves the mosque, the men line up on either side and give kandha which means to offer your shoulder. There are no pall bearers and the whole male congregation becomes pall bearers. It is quite remarkable.
While I was waiting for the coffin, my legs started aching and I was having difficulties standing. I had to walk to the senior's section and sit down. I was a little embarrassed and just looked down at my feet to avoid eye contact with anybody. To look at me, I have never looked my age and I am sure there were some men who wondered why this young man hobbled to the seating area in the senior's section and sat down while the others waited, solemnly, with patience.
I have good news and bad news. The good news is that the new medications are (I think) helping.
The bad news - I am irritable, anxious and I pee and pee and pee and pee and pee and I do not know if I will wet myself in public. On top of that, I still do not know what I have! Oh, I am depressed!
I have more good news and bad news. I am a young looking forty two year old who passes for 25 and sometimes, (when I have just had a hair cut) even eighteen (I actually got carded just last year).
When I walk with my mother, she extends her arm for me to hold and use as support.
People say "What a good boy. He holds his mother's hand".
The bad news is that it is actually she who holds my hand! I hobble and wobble as if I was ninety, I cannot stand for long, I get tired and the worst news of all.......................this is just the beginning.
* * *
That was three weeks ago. Since then I have had extreme fatigue and several emotional outbursts and panic attacks. I was sent to another neurologist - the top in Canada, to determine whether I have Multiple Sclerosis or Devic's. Before this I had never even heard of Devic's! He prescribed some medication for bladder control and another called Apo-Doxepin for anxiety. I took one pill and I was almost incapacitated. Now I know how they treat people with depression and anxiety. They drug them and immobilize them to the state of a waking sleep. Needless to say I took just the one and stopped taking them. The instructions said to take one a day and even two if necessary. If one turned me into a zombie, I can't imagine what two would have done. Probably, knocked me out!
I have a life to live! I still have a business to run!
I finally found out that Devic's is a cousin to Multiple Sclerosis (This is the easiest explanation) and even though the symptoms are similar, the diseases are slightly different and need different approaches and.......... Devic's actually kills! Before this, I had never even heard of it.
However, in order to determine whether I have MS or Devic's, I have to take another MRI and have some more tests - wires to my head and legs to measure the electric impulses.
This particular doctor is so arrogant and full of himself. He has what I like to call the 'God complex'. I am the one who is ill and he is the one with the complex!
I simply hate hospitals. Everybody is so grim and glum. Even the well can get sick here, and the sick get sicker.
The various tests showed that I do not have Devic's but in fact, I do have Multiple Sclerosis. Even though, the first Neurologist's diagnosis says 'It is unlikely that this patient has Multiple Sclerosis because it is quite uncommon in people of African descent.' Firstly, I am of Indian decent born in Africa (this shows his level of ignorance); secondly, I do have MS; whether he thinks it is likely or not.
Now here's a twisted perspective to the good news and bad news scenario. The good news is that I do not have Devic's and the bad news is that I have Multiple Sclerosis. I have the better one of the two evils!
Now they need to identify what kind of Multiple Sclerosis I have. How many are there?
In the meantime, while they are determining that and what level it is at, Michael is sending me to Michigan to his cousin, Doctor Linda Palter, who will treat me. I do not know the "how's or why's" of her treatment. All I know is that she gets results with chronic fatigue, with re-training the body and with pressure points. I do not even know what these terms mean. But I have agreed to go. I am going to drive eight hours to Muskegon to see her with only hope as my motivation.
We have also at this time discovered Glyco-nutrients which help rebuild the sugars on the myelin sheath. I still do not know why I take what I take. The doctor(s) or Michael say "take" and I take. Michael says "go to Michigan" and I am now going to Michigan.
The eight hours trip seems a little intimidating.
Will I survive the drive? Will I fall asleep? What if I have the sudden urge to pee? Will I kill myself in a road accident having fallen asleep at the wheel? (Maybe this is my chance.)
I told the neurologist that I fall asleep very easily and he has given me Alertec. This will help keep me alert and awake, especially when I am driving on the highway.
So, I am off to Muskegon, Michigan. Thank God, I am not alone. My mother is going to accompany me.
* * *
The drive to Muskegon took almost eight hours. We stopped every thirty to forty-five minutes for a coffee and pee break. I call them my input-output breaks.
The trip was uneventful, maybe even a little stressful as I was unsure of the route, but we made it. I am glad my mother came with me.
Coffee, Alertec and loud Indian music kept me from falling asleep at the wheel.
Incidentally, two Alertec pills kept me wide awake for 48 hours straight!
I am having a treatment I do not quite understand. Let me see if I can describe it. She makes me hold a vial - a sample of material, and my body and muscles react in either a strong or a weak manner. This then guides the treatment. My specific treatment is for my immune and nervous systems. I think. After two days of four sessions a day, I feel extremely tired, even more than I regularly feel. Doctor Linda says my body is using the energy to heal. I am supposed to feel tired to know it is actually working. The treatment in her words "involves stimulating meridians and spinal nerves to restore the normal flow of energy in the body". In simple words (for simple-minded me) since my body is attacking itself, it has to get trained not to do so. That was simple enough.
(Continues...)
Excerpted from I Have Good News and Bad Newsby Alnoor Rajan Talwar Copyright © 2010 by Alnoor Rajan Talwar. Excerpted by permission.
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