Tag Archives: Multiple Sclerosis

“My Turn Now”

©Dr. Rajas Deshpande

“I don’t want to live like this. I have stopped eating since today. Please do not be angry with me for this, but I cannot see you and my children suffer because of my illness. Let me go with peace” Geetanjali said to her husband.

Eighteen years after her marriage, in her late thirties, Geetanjali suddenly lost the function of one half of her body. Her children were still in school. Her husband Gajendra Jagtap works as a school teacher and does some farming on a small piece of land they own. The whole family was shocked and shattered with this calamity that befell Geetanjali. But Gajendra Jagtap decided not to be broken down by destiny, and took his wife immediately to the best hospitals in Mumbai. They were told that Geetanjali was suffering from Multiple Sclerosis. After a few days of treatment, they could not afford to stay in Mumbai and came to Pune as it was nearer to their village. The Multiple Sclerosis Society of Pune extended its helping hand. Geetanjali was yet unable to stand up or walk. ‘This illness is totally unpredictable, anyone can develop blindness or disability anytime’ doctors told them. Geetanjali felt hopeless. She was very depressed with the thought of stressing her husband financially to provide for the treatment expenses. She also worried if her children’s education will suffer due to her illness and financial constraints. This was the reason she decided that she did not want to live any further, and gave up eating or drinking anything.

But Gajendra was not the typical Indian husband. This B. Sc. Graduate who had taken up teaching in a rural school as his profession had a big heart, and harbored principles of equality and respect for women, just like a highly educated spouse in a developed country. He told Geetanjali, ‘You have served me and our children for over eighteen years now. When I was working in the school or in the farm, you looked after the home, cooked for us and fed us sumptuously. Now give us a chance to repay for what you have done for us. It’s my turn now. I am going to take care of you just like you cared for us.’ Geetanjhali could not hold her emotions and sobbed when she narrated this story to me.

‘At that point of time, I felt like living only to help my family. I decided to use whatever few healthy days I had to make my husband and children happy.’ She started to fight her disability with a new spirit, and in a few months could walk very well again. Since then she had attacks of this disease many times, but vehemently fought it to recover every time, with the help of her husband.

Gajendra told me “I explained my children our situation. I told them that we don’t have much money left, and that they must only complete their education based upon merit. We are very fortunate that our children decided to grow up quite early in their childhood. Both of them studied very well, and my elder son is now doing his post graduation which he got through a scholarship in Delhi. Even my daughter got excellent marks and is now pursuing her post graduation by winning a scholarship. Both of them take care of their own expenses, and never bother us for money. Even I have decided that whatever our destiny presents us with, we will face it with a smile, and never accept defeat in any situation. We have to visit hospitals many times, spend on treatment and investigations, travel many times, but we do it all with a spirit of winning together. Whenever she can, she still takes care of the home, and when she can’t, I do it with the help of my daughter. But we never feel desolate or depressed”.

In the developed world, people suffering from this illness get a lot of healthcare facilities, and even income tax concessions. However, this farmer from a lower middle class background who does not receive any such help, has not only resurrected his family, but created a new life for his wife with his sheer love and determination. The most admirable thing about his love story is the respect and feeling of equality with which he thinks of his wife. Geetanjali also stood up firmly with him to conquer this illness, with all her love and might. Together, they have indeed defeated their destiny.

We sincerely pray for the excellent health, well-being and long life for each member of this wonderful and ideal family.

© Dr. Rajas Deshpande

Neurologist, Pune

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Hats Off, Phoenix!

(c) Dr. Rajas Deshpande.

She had paralysis, over eight times in last six years. Lost vision few times. Lost balance many times. Even lost speech and bits of memory. Severe vertigo wouldn’t let her move for days. Many hospital admissions, many injection courses and tests. Barely two weeks ago, she had come to the OPD unable to walk at all. Yet, when she entered the OPD today, walking with a spring in her steps and a smile upon her face, the first thing she said was “I am joining my office tomorrow, Doc! You must convince my husband to let me. I am all fine now”.

Dinaz Dastoor, diagnosed with Multiple Sclerosis, a cruel, unpredictable and disabling disease of the brain and spine, sets an example of grit and positivity for patients and doctors alike! She refuses to be defeated by the disease, does not take any advantage or ask for sympathy, and deals with it like a phoenix: whenever it gets her, she rises above it and flies again.

She refused to take costly medicines with many adverse effects. She refused to give up her chosen duties: housekeeping and bringing up two daughters while fighting with this monster called MS. She attributes all her victories to an ongoing support and encouragement from her husband Rohinton Dastoor and their daughters “ Everytime I feel low, every time I am down in with disability, my husband sits by me and tells me that I am going to recover. He and my daughters have adjusted their lifestyles to accommodate the unpredictable attacks of my illness. Even when growing up, my daughters took care to keep troubles out of home, never argued with me. They all kept stress away from me. Without this supporting family, I won’t be as strong as I am today.. I am really lucky” says a smiling Dinaz.

She started working and is carrying on her job very well, of course her office and superiors have been quite accommodating, a rare scenario in India.

Her husband, one of the most polite and sweetest gentlemen I have ever met, handles all situations with a smile. The only time I ever saw him worried was when Dinaz had once developed a very severe attack and was paralysed below neck. “Do what is best for her, doc. I have complete faith in your decisions” he had said.

Today, he opened up when I requested their permission to share their beautiful story. “It is not that we didn’t have to compromise. There are many desires we had to curb: traveling, adventure sports, and what not. But I always tried to imagine myself in her shoes: what if this had happened to me? How would I have liked her to understand and accommodate my troubles? That way, it was easier for me to make decisions. There are more things we can do together even now than what we can’t. We always think about what we can do, never about what we can’t”. He had just said something that would put so many “MCP” husbands to shame, especially those who ill-treat their wives holding them guilty for their illness.

“A patient and her family only expect that the doctor spends enough time with us to listen to what we have to say, understand and address our concerns, and cares for us” Mr. Dastoor commented.

Meeting this smiling couple not only brightens my day, but makes me feel grateful that I can witness this happen, and write about it!

Hats Off to this beautiful couple, who define the spirit of love in its purest form.

(c) Dr. Rajas Deshpande

The Divine Eye

PBMAHVDEH

The Divine Eye
© Dr. Rajas Deshpande

What does a child of 15 years do if his vision is completely and permanently lost?
He goes to the best place in the world to learn about care and rehabilitation of the blind, returns to India, and starts a society to help the blind: “Puna Blind Men’s Association”(PBMA).

But that was 60 years ago.

Now, it has grown. A 250 bedded eye hospital, one of the largest in India, with over 40 doctors, offering the best world-class eye treatment and surgeries. Poor patients are treated / operated completely free, paying patients are charged very low, and there also is a facility of “Premium Services” for those who want to pay. Over 60-70% of the work is free. Patients are picked up and dropped back free by hospital’s vehicles. Many hands of God donate handsomely to this set up, knowing its good work.

Their Technical Training Institute works to train and rehabilitate the blind from working age group. Their old age home houses over 50 blind women, all looked after well.

Their international collaborations attract foreign doctors for training / fellowships. They conduct postgraduate training courses and research , and have many international publications to their credit. They offer services in almost all subspecialties in ophthalmology, like paediatric ophthalmology.

“The PBMA’s H. V. Desai Eye Hospital” in Mohammadwadi, Hadapsar, Pune is a glorious example of what human wish can achieve, how a single man’s dream can extend the dimensions of humanity. Too good to be true, but true indeed, and standing proud!

Padmashree Mr. Niranjan Pandya is the vision behind this institute. Col. Dr. Madan Deshpande is the Chief Medical Officer / Leader. Mr. Nitin Desai is the Chairman. The Medical Directors, Dr. Rahul Deshpande and Dr. Dole were justifiably proud when they told me the story of this great hospital.

Today, I was very fortunate to interact with the doctors there, who had me over to speak about “Multiple Sclerosis and Optic Neuritis”. Thank you, Mr. Vinayak Bhandarkar and Mr. Venkatesh Madake for introducing me to this hospital.

I feel proud to have spoken in this institute that harbours the very essence of true humanity!

May this spread and may millions continue to benefit forever!

© Dr. Rajas Deshpande

Come on India, take a selfie with this daughter of yours!

Come on India, take a selfie with this daughter of yours!

© Dr. Rajas Deshpande

“Will I ever win? I feel suicidal.” said the 25 year old orphan with Multiple Sclerosis. In a world drooling over the stories of “10 Richest” or “20 Most Beautiful” women, there’s hardly any scope for noticing an orphan girl who fights alone against an incurable disease.

VS, a dignified young Indian lady, divides her life fighting three wars: living as a single female at a bed-share facility for women, working her job as a receptionist at a nearby clinic that earns her a minor income, and the incurable neurological disease Multiple sclerosis that causes disability at an early age.

“My mother left me at an orphanage when I was 2 years old. She saw me last when I was 3. After that I don’t know anything about her or my father. The orphanage taught me how to survive with wild human beings around. They also helped for my education. I was diagnosed with MS when I was 20. They shifted me to Pune for better climate. Now I am pursuing BA”. VS told me.

“The owner of the orphanage in Pune didn’t know Multiple Sclerosis, and always said I was ‘faking’ my limp and fatigue. She made me do a lot of physical work. I couldn’t. So I left that orphanage”.

She then stayed at various places: a blind school where a volunteer was required, homes of other MS patients who came to know her through MS society, sometimes on the streets and now got a bed share at a dingy, cramped female hostel.

“Whenever I get sick and cannot walk due to MS attack, a local hospital helps me with steroid doses, the MS society gives some medicines free. Sometimes other MS patients pay for my treatment”.

Now she has developed mood swings and depression, common in MS patients especially her age. Naturally, her behavior is intolerable or unacceptable to those who invite her to stay with themselves. Where we cannot tolerate the raised voice and mental fluctuations of our own parents and children, who is trained to shoulder those of an orphan? Who will pause their own life to feel the dying mental pulse of someone who knows that there will be no one to look after her if at all she is crippled, and that there is no cure for her illness yet?

No language in this world can describe Loneliness.

“Some societies help, but they have their rules. The MS society helped me many times. But then, how long can I do this?”

She is now tired. She knows her limp will not improve. She knows free treatments are not the only answer. “I feel suicidal often now, I know things will never be my way. Life will always be at the mercy of someone’s help”.

I told her it is common to feel so in MS, and good treatments and counseling can help most patients.

Her reply left me shut: “Sir, I don’t need that. I plan to fight this with my own mind, for I want to survive without any mental dependence.  Someone should have counseled my mother about how I will feel all my life when I come to know that she dumped me”.

“I wanted to marry and have children. Who will marry me? I know I am beautiful and some men are after me, but none for marrying..”. These are probably the most difficult words for a proud woman to say to anyone, and her eyes clouded red.

As VS broke down in a tearless silence, I fought with a hundred false reassuring words I could say.  I didn’t want to insult her suffering by saying them. A doctor must learn to cry within, still with a smile upon his face.

I remembered the story about Lord Jesus Christ, describing his “Via Dolorosa” (journey of pain), when he had to carry his own cross while being tortured all the way to the site of his own crucifixion.

There are so many patients who know they are going downhill, that they will never return to good life again. No songs of motivation, no thunderous clapping of groups, no shouting of any slogans, no celebrations of their plight will ever cure them. This world is addicted to “superficial temporary relief” in an attempt of “self glorification” at the cost of someone else’s suffering. Real answers are far away.

We are all engaged in shamelessly loving ourselves. So much so, that a country that plans multi-crore space missions in search of new life cannot take care of the “Live” suffering of a young woman existing NOW, here, amongst us! A country proud of 100 crore stars and billion dollar IPLs cannot support its own daughter in suffering.

Come on India, take a selfie with this daughter of yours!

There is no hope for dignity without money.

The new definition of “Orphan” is “poor”.

And these words just screams in a black hole !

God solve this please.

© Dr. Rajas Deshpande

Real story. VS is in Pune, and kindly permitted me to write her story.

RD