My friend with multiple sclerosis

My friend with Multiple sclerosis

We won't name her.

She was my classmate at the medical school from 1985- 1991. Subsequently, of course we remained at the same institute, but we opted for different branches. She joined the department of anaesthesia, while I became an Ophthalmologist. We parted in 1994.

I had not had much of a contact with her for years. Only a couple of weeks ago, another classmate revealed that she now has multiple sclerosis (MS). Those, who do not know anything about the disease, it can be described as follows:

Our brain and central nervous system comprise of a complex set of electrical connections of neurons that are akin to electrical wires that we see in day to day life. Just as the electrical wires have their insulation, these neurons are also wrapped within a sheath called myeline sheath. MS is an auto immune disease, which means, our body's defense mechanism would perceive certain ingredients in the sheath to be of "foreign origin" and try to combat them. This would be a gory affair resulting in casualties! As a consequence of neuronal dysfunction, a lot of activities can go into disarray. Depending upon which nerve is involved, you can have problems in walking, eating or something else. Some may develop visual dysfunction due to swelling (inflammation) in the optic nerve - that carries visual information up to your brain. The process whereby the neuronal sheath is damaged, is termed "demyelination".

She has not had visual symptoms, although for one of my medical students these were the starting symptoms of the disease.

I recently had an opportunity to see this classmate of mine who has been lately on an immunomodulator drug called "interferon".

She has been through a facial paralysis and recovered. To make the maters worse, the partS of her central nervous system that are exhibiting demyelination include a crucial part of her spine that controls the respiratory muscles - the cervical C3,4,5 region.

During our meeting, the tremendous grit and determination was writ large on her face. A fighter that her close friends call her, was quiet obvious. I would like to add, that physicians often make bad patients since they seem to have a "panoramic view" of their illness.

She was certainly different!

In fact it was she who suggested the diagnosis to the doctor who was treating her. Knowing everything about the disease, yet behaving so compose, I feel is a remarkable feet.

As the time progress, the research on MS, that ranks among the priority areas, would lead to better treatment options. Meanwhile she continues to fight a disease that she (and rest of us alike) had heard litle about during our graduation. With her current treatment she is leading a normal life to those who do not know anything about her ailment: She looks and behaves like the rest of us, drives to the hospital she works in, sticks to the treatment making sure that her interferon injections are scheduled at he week end allowing room for the fever that would ensue.

Wish a speedy and complete recovery you fighter!

Bye!

Arthur Ashe's memorable quote

“If I were to say 'God, why me?' about the bad things, then I should have said 'God, why me?' about the good things that happened in my life."


Dear readers,

A fellow ophthalmologist just mailed me an information (the above quote) about Arthur Ashe, the tennis player who died of AIDS. It seems there are many people with a rationalist attitude about their illnesses. Arthur Ashe clearly lived what some would not imagine!

Goodbye!

A survivor from Bombay

Do you recognize this child?

He is Moshe - the only surviving child of Rivka and Rabbi Holtzberg who were recently gunned down by terrorists in Bombay. (I won’t call it Mumbai but Bombay that belongs to everyone!)


The child is inconsolable back in Israel.


A two year old constantly looking for a mom who would never come back. A mom who would just remain an elusive angel for the rest of the child’s life.


Fortunately he has a whole nation full of empathy behind him. But that can not win him his mom back!


Look at him again and think. How would he cope with the loss? What would this child be in future?


Now turned inwards, and look into your own miseries.


We often tend to feel that our own miseries have been the worst. The “Why me” question tends to creep up every time something befalls upon us.


In reality your own suffering or illness can indeed be a major one. May be while I am writing this you are about to have a recurrent, stubborn tumor removed by a neurosurgeon. May be this means, diverting family resources while you have an unmarried daughter and an unemployed son. I can imagine how sometimes you wished, things end for you or may be the secured job you have had, now goes to your this son in question, who has not found a job despite an impressive CV.


A friend of mine calls this tendency to consider your own plight the most troublesome one, a kind of mass masochism that prevails, whereby deep inside you feel happy to be in the situation that is by no means an enviable one. An example would be, behaving as one at the receiving end when someone has written you off in a relationship. “I did such and such thing for him / her, and this is what I got in return”, is a thought that would be instantly gratifying but would do little in long run.


Accepting your miseries would on the other hand empower you to handle them.


The void in Moshe’s life will always there even with a nation behind him. But little Moshe will have his own remarkable journey to have his own tryst with destiny!


Amen

Success

Success amidst adversities.


Suniti was around 14 years old when she came to with an unusual request. She wanted me to help her seek admission to the Science stream of her school. She had been a 'better than average' performer at her school who would secure a first division. Her rank in her small town school was reasonably good. However, the school authorities were skeptical about her future in the Science stream. How would she complete her course, and how would she go through the practical classes? These were some of the concerns they had in mind.


Suniti's academic performance was not a real measure of her inherent potential. She had a history of cataract surgery in both eyes while she was a very young child - three or four year old. However the surgery was not contemplated early enough and the crucial years when visual functions develop had passed away. Following the surgery she needed rehabilitation with glasses, but this aspect was not looked into timely.


The surgeries therefore did not turn out to be very useful. She had to manage with a 3/60 vision - which means she could barely see objects at a distance of three meters while a normal person would be able to read the same letters from a distance of 60 meters.

Her eyes exhibited continuous sideways movement technically called "nystagmus". This meant that eyes had a wondering gaze.

Suniti's problem is an example of a condition called "amblyopia" - a lazy eye that did not realize its true potential due to "lack of proper opportunities."

The eyes had not attained their visual potential. How and why should that translate to lack of opportunities for her! I thought.

"Is it true, I can not pursue a course in Science?” She asked me.

"My view is, you can. It only depends on whether you have an inclination, aptitude and temperament to apply Science to your life. It depends on whether you have a rational approach to life". I said.

"There are people who have little education but go on to become great innovators. There are others who carry a "tag" of Science graduate, and have nothing Scientific about them." I told her sister who accompanied her. Science is not the domain only for those who can see. I once read about a NASA space scientist who was blind but had a galaxy discovered!

"So what can we do? The Principal would probably pay heed to any comment you might write!" The sister pleaded.

I gave them a detailed letter addressed to the Principal citing what were essentially my views on the right to education and the status of education in India.

Few years elapsed. I did not know what happened to the girl or if she actually pursued any kind of education thereafter.

It was now that the girl came back again! This time with her younger sister. She wanted to share a positive development in her life: She was about to graduate as a physiotherapist in few months and had had her training at a leading hospital in Bombay.

It has been one year since that last meeting. I have been told she has opted for a placement in the metropolitan itself. Her parents are happy for her achievements.

Until recently there were very few opportunities for visually challenged persons in India: While we were residents at Hamidia Hospital, Bhopal affiliated to the Gandhi Medical College, one Mr. Thakur used to run a telephone booth. Few years later the booth was dismantled, I do not know where did the guy shift or what did he do to earn a living thereafter; in any case a telephone booth has ceased to be a career option for such people as almost everyone has a mobile these days. Balakdas who had unsuccessful corneal transplantation was luckier. He worked as a ward attendant at the same eye department where he had his surgeries.

Coming back to Suniti, Someone whose mother worried day and night about what would happen to her after she passes away was now helping sighted people conquer their pain through her physiotherapy!

All this had been possible only because at a crucial juncture of her life a kind school Principal relented and allowed her to pick up a subject of her choice. The system which is otherwise known for its absurd liking to "go by the rule book" had only few years ago nearly jeopardized the career of a medical graduate at the All India Institute of Medical Sciences, New Delhi but for the intervention of the National Human Rights Commission. This chap had turned blind during his medical graduation due to a disease called "Eales' disease" and the Medical Council of India had been adamant to truncate his career on the grounds of his inability to take the clinical part of his examination. Thanks to the directions of the NHRC, he would have a chance to pursue a medical specialty such as Psychiatry.

The girl and the medical student are on their way to professional rehabilitation. I am sure they will make better professionals than others with normal sight.

If you come across someone whose right to education is being challenged due to physical or visual challenges, make an effort to propagate a positive message.

Thanks a lot.

Goodbye!

Feedback

Dear readers,

Thanks for participating in the pool as to how boring or otherwise (inspiring) this blog is. I wish I could get more direct feedbacks as to what you would like to have in the blog: More inspiring stories, financial management to save for an illness, simple anecdotes, more complex medical scenario or any thing else? ... Simple tips?

I intend to bring out the story of a young girl, legally blind but qualifying herself to be a physiotherapist in the next post.

Do post your comments.

Thanks and good bye.

Man versus virus: Story of a brave AIDS patient

To

Those close ones who taught me medicine in a way my medical text books and lectures didn’t.

Dear little one,

What worries us most is the manner we would have to answer questions that have probably already begun to baffle your young mind.

Howsoever young we might be, perhaps all of us have “a little Buddha” inside us eager to find out the ways of nature. I am not sure, how we will answer all your questions of this kind in future, but let me today tell you a story of a middle aged lady who literally allowed her body to be used as a clinical learning tool for medics:

The brave Uzma

This lady we are talking of, was wife of a deceased diplomat from some middle-east country. The diplomat, once posted in India, had died of some opportunistic infection with AIDS, and had passed on his infection to his wife.
Uzma as I would prefer to call her was the most amazing AIDS patient I have seen till date. She had an ocular infection with a virus called ‘cytomegalovirus’ seen in an advanced stage of AIDS.
We were around three or four fellows and two students with our consultant. One by one we took turn to peep into her eyes. She had no vision and thus had no clue as to how many prospective examiners were there to see her.
Each examiner would take 5-8 minutes for a proper view. Soon everyone else had finished. I was the one who had to complete her medical records, thus I was required to spend maximum time with her.
Unaware I was the next one in the queue, she assumed a sitting posture on her couch.
It was now that I requested her to lie down again for a while.
“Madam, would you please lie down again for a while…”, I said.
“Oh, so one more is there”, she said and gently lied down again.
Throughout next ten minutes or fifteen, there was no protest, no anxiety or impatience. It was like I was examining a plaster of Paris model. Her serenity was extra ordinary.
She was lively and yet quiet and composed.
I realized that despite her advanced illness and visual handicap, she was still a very confidant lady – someone in total control of her emotions. After her examination, she thanked me and got up from the couch.
While so many of us tend to “absolutize” our minor illnesses as trivial as recurrent cold, here was a lady who had a clear understanding of her problem but refused to be “written off” by life that was all set to defeat her.
Let us salute the lady who has since deceased. I owe my practical education on AIDS to patients such as these.
More stories next time!
Until then,
Goodbye!

Innocence killed for ever: Story of atrocity on a child

“Why not you”:

Last time I commented on how we often feel ourselves to be in the most hapless situation. Here is story of child who underwent a trauma of a lifetime you would not like to imagine.

Before we begin, answering the question, “why me” raised in the last post, let me ask you: Why not you?

Amidst adversities you face currently, you feel you are at a disadvantage. What about the occasion, when your closest rival in your class got a hepatitis infection deeply denting his chance to upset your rank in the class? Or, when your business rival lost an opportunity to you just because you were better connected socially than him.

Or, did you actually care when your favourite news channel telecast a breaking news about a heinous murder? You were drawn to the idiot box, but like many this was simply a piece of news?

God is mischievous for making his presence felt in adverse time!

The story of the boy follows now:

It was a dark and cold night in a small village in Gujarat. Some passerby villagers heard the cries of a child near a field. As they approached the place, they were horrified to see a boy profusely bleeding, crying, unable to find his way to his home.

Unable to get back home may look common enough for a young child. Does it? Except that this child had been assaulted by someone grievously with a sharp weapon – the eyes had been perforated and the child was left bleeding in an open, cold field on a night that didn’t seem to end for the innocent child.
Motive of the crime was not known. Perhaps teaching a lesson to his parents!
Culprits were unknown, most probably never booked for what was more than a crime. They must be etched permanently on the memory of the child.

The story of this child appeared on one of the inner pages of the Times of India a few years ago. The then president of India, Mr. APJ Abdul Kalam took note of it and rang up both the state administration as well a leading eye specialist, Dr. Natarajan in Bombay. The child was airlifted to Bombay (Now Raj Thackery’s Mumbai) by a state helicopter two days after the injury. I do not know if the child’s eyes (or even one eye) could be salvaged. Going by the initial account in the media, the child’s eyes did not seem to have a favorable prognosis.

However, the child survived the injury. This means, for the rest of his life would have to live and relive the tragedy. Every day when he would wake up, the “why me” question would silently engulf him. His experience would make him wary of all the strangers; He would no longer be in a position to trust humans and yet in some way would have to depend on those (us) demons who gave him the current predicament. Wherever this child is and whatever he might be doing, I am sure he is trying to more than survive – he is living despite the struggle the life has become for him. Inch by inch he is moving on in life – without overtly complaining. Just like the puppy mentioned in my opening story in the same blog.

It’s fortunate that human life is finite as is everything here. One day he would just cease to exist, but the child I am sure, is not going to adopt an escape route. He would survive against the odds created.

If this child can, why can’t you bear what seems to have knocked you down.

Go through this. If you are a believer, let it be seen as a test that the “almighty” has designed for you. And in case you are not, you got your illness merely as a chance unlike this child on whom it was deliberately inflicted.

Take it sportingly.

Try to combat your illness. Look for a role model. If none is in sight, you probably have a chance to be one yourself! How do you go through it, would help others sail too.

Good luck.

The “Why me” question:

As a medical professional, I come across people who have actually gone through a misery and coped successfully. There are others who would curse the almighty and go into depression. I hope, there is a coping mechanism which inherent, and another that can be acquired through self help, grit and determination.

The "Why me" question:

Have you ever been through an agonizing medical illness? Or, seen some one very close to you going through one? Wouldn’t you like to shake the whole world and ask the almighty, “why you”?

The question is simple, so is probably the answer: You because, it could have been any one. Purely random game, life is. Sometimes we envy people, some time others envy us! So, why complain?

Take inspiration from an insect you accidentally injure while taking a stroll in a lawn or a puppy getting hit by a speeding vehicle. The insect would just begin to move immediately. No grudges. Life is cruel. But so it is to everyone regardless of the bank balance! After being hit by a vehicle, and ridden to bed for months many of us would have suicidal thoughts: Jumping through the hospital window is an option.

Go back and have a look at the insect.
Taking that final exit is not possible for the Poor creature. Throw it outside yourself. It survives for it doesn’t have enough body mass for a fatal impact. Think of the puppy, it does cry for a brief moment. But puppy knows life has to go on even with a limp. With no mother to hold it, the puppy soon disappears from sight.

Jumping from the window is an option for only higher and evolved animals like us. But “he” doesn’t endorse it.

So what is the solution?

Ignorance can be a bliss. But not so for long. As “why me” gets blurred, you would have rejuvenated interests in your illness. What is the best remedy? Can anyone else help? What if it doesn’t subside? How have others coped with illness? How can I cope with the situation myself?

This would be the second phase of your ascent. A quest for knowledge.

In a subsequent phase you might even extend a helping hand to some other sufferer.

This is to be continued.....when I come back with more to help you help yourself.
Until then,
Goodbye!