Archive for December 2016
Two years ago…
A’s father holds a picture of a vibrantly lovely girl in his hand and looks at it with a tinge of sadness in his eyes. The girl sitting opposite him is the same, but she is now merely a shadow of what she was in the picture. A (24) is so wasted that the several layers of woolens she wears hang loosely on her frame. Her bones are thinly covered by skin and she completely signifies the proverbial ‘skin and bone’ simile. Her speech is interrupted by pauses, as she becomes short of breath very often. When she changes position, she grimaces because each limb of her body protests with pain.She doesn’t smile as radiantly, or so often anymore. She has been diagnosed with drug resistant tuberculosis and has been on DOTS Plus for two months…
Two years is a long time to set life on hold, as A has done. Over the last two years, while most of us were living lives full of change and activity, achievements and excitement and maybe trials and tribulations too, for this young girl from a small town of Karnataka in Southern India, time had stood still. Her days and nights stretched endlessly before her and she couldn’t quite see the road ahead because she was living in a hazy world of pain, suffering and hopelessness.
Her days seemed endlessly monotonous. Day after day, for over two years, she woke up to pain, toxic medication, suffering and side-effects. When she slept, she wasn’t sure of a night’s rest as she woke up most nights wanting to douse herself with cold water, so harsh were the side-effects of the medication she was taking for MDR-TB. “My body feels like it is on fire,” she said to me more than once. She was often on the brink and wanted to give up on the treatment and take her chances with death. But her parents, her ORW-turned-friend Nagarathna (who was always on call, be it day or night), and a few trusted persons she reached out to, ensured that every time she felt like giving up, she actually persevered.
One step at a time, slowly, aided a great deal by her own will to overcome, she gritted her teeth and went on… Till the day her doctor announced she was cured. It had been two years and a few months. She had gone from a mere 29 kgs to her present 40.5 kgs. Her appetite had picked up and suddenly, she found she wasn’t feeling so hopeless anymore.
‘A’ was bubbling over with happiness when I called to seek her permission to wish my readers through her story! She shared with me that she had begun working again, albeit from home; was riding her scooter; giving tuition from home and frenetically making up for lost time. She was eager that I appeal to others like her not to lost hope and to stay with treatment, however difficult it was as the end would be happy! She has also assured me that she will be available to speak to people who wish to know what she went through and how she overcame.She had access to and adopted the 4 point TB cure mantra!
WISH YOU ALL A HAPPY AND HEALTHY YEAR AHEAD!!
FROM ‘A’, A YOUNG 26-YEAR OLD, WHO HAS COME BACK TO LIVE LIFE WITH RENEWED VIGOUR AFTER BEING ON MDR-TB MEDICATION FOR OVER TWO YEARS!
If you wish to know more about A, mail me: firstname.lastname@example.org
Dear Members of the Medical Fraternity,
Greetings from JATB and the GR Initiative!
This is the last post of this year from JATB. As the year draws to a close, as part of my (a lay person’s) commitment to preventive health I want to lay a few questions and dilemmas before the medical fraternity.
My questions have a context. I remember the day his oncologist called me aside, and with a smile on his face (he was probably too pained to do anything else), told me that my brother had terminal stage lung cancer, and was not expected to live beyond six months or so. And then he left. Just like that, leaving me to cope with this news. My brother was in his room, but ten steps away, and I did not know how to go back inside and tell him what the doctor had said. Instead, I went into the lawns of the hospital, alone, and (scarcely worried about who was looking) loudly uttered the word death several times, till it sat easily on my tongue. Next, I said to myself (loudly again), that my brother was dying. I said this again and again, till it did not cause my heart to flutter and breath to come in short gasps. Because I knew surrender was inevitable. And then, I walked into my brother’s room and lied to him about what the doctor had said. When in actual fact, he was the one person who had a right to know the truth.
Life and health, or the lack of it are not like riches or privileges or position. These do not discriminate or favour but a few. Every living being born on this earth ages by the minute, by the second, and the millisecond. And every living being dies. Death is the only non-negotiable truth in the lives of living beings. All else is negotiable. And yet, this is the subject we run away from, all the time. Death is discussed in hushed tones, or not at all, even by the medical fraternity.
When my brother was steadily progressing towards what is the logical end to every life, we realized how under-prepared we were, and how hard we all, his team of doctors included, were refusing to accept the inevitable. I ask now, is it not the duty of the medical fraternity to teach us lay persons how to ‘learn to die’ in a sense? Was it enough for them to tell us, those around him, that he was dying and then continue to try to make him live? Should they not have prepared my brother for a smooth exit? After all, it is only they who knew the extent of the truth. Only they knew how close he was to the brink.
It is doctors who know to interpret reports, determine how good or poor the prognosis is going to be, and how near the end is. And in reality, it is they, who most often are in denial. I have reason to believe they go into denial when faced with a case they know is hopeless. And I empathise with them. It can’t be easy to walk into the room of a person who is fully conscious, and yet, dying. It can’t be easy to look into hopeful eyes that are waiting for reassurance and throw up empty hands that have nothing to offer that can justify that hope. So they stopped walking in when they knew he was going. We only had junior interns or on-the-verge of retirement doctors who came to his room. His questions got only vague replies and every doctor who spoke to him only hedged and made him even more anxious.
But is it that impossible? Is it so impossible to face this spectre of death? For a moment, can science not step back and humanities take over? Can there not be a marriage of the two? After all death is an enemy that has never been defeated. EVER. It has, on the other hand, defeated kings and conquerors, rich and poor, young and old, wise and otherwise. No one can claim victory against this force. So why is the medical fraternity constantly at odds with this force? Cannot doctors be ‘taught to teach about death’? Has science become so arrogant about its own achievements and invincibility that it has forgotten how to surrender to an adversary as strong as death?
This is not a rant; above all it is not an attempt to lay blame on the doctors who treated my brother. On the other hand, I am grateful to them for making him as comfortable as they could. I even saw tears lurking in the eyes of his oncologist on the last day that he had the courage to walk into his room, days before my brother died.
Then what am I attempting to say? I’m probably appealing that death be made a part of the process of healthcare itself. I’m probably asking that death be a part of discussions on life and life-giving processes. And that we, the affected, be part of these discussions. I’m probably asking that doctors be put through short capsules in medical college itself which teaches them that they are going to confront death at every corner and they need to be able to face it. They need to be the bridge between death and the dying or the survivors left by the dying.
Will these questions seem earth-shaking and new to the medical fraternity? Not in the bit I know. Then what will be new? Probably the demand that we stop running away from it and look death in the eye and say, come get me, I’m ready. My doctors have readied me to face you.
Yours as always,
Bharathi Ghanashyam (purged for ever from questions that were dying to be asked)
P.S. If I asked this during the festive season, there is a reason. Death, I reiterate is something to be celebrated, and not dreaded or feared, or shied away from. The day we do that, we’ll stop being scared of death! Who better to help society do that, than the medical fraternity?
Merry Christmas and a Happy New Year!