Stories worth listening again....

(2023) I met Mrs. R after 20 years today. She and I were happy meeting each other after this long period. She said, “My elder son (who is Sero-positive) is a body builder and doing very well. Younger one is married and doing well too. I am doing fine.” 

 

Then she told this story. “A year ago, I was waiting for my medications in the government hospital, and I saw this young lady who looked very disturbed. I went close to her and asked her what happened. She said you will not understand I am HIV positive. I smiled and told her; I am too, and I have been on medications for last 20 years. Then she said, you will not understand, I am pregnant, and I want to abort the pregnancy. I again told, I can understand, and told her my story. She after listening to my story, took my phone number and walked off. A year later I get a call from an unknown number, and it turned out to be the same lady. She did not abort, had a baby and is on treatment and doing well. This is what I do these days Sir, whenever I go for medications, find others, and encourage them”. 

20 years ago, the story given below was written as part of our learnings in the care program. This was the same Mrs. R! 

 

(2003) It was a Sunday morning, and I had no plans of going to the hospital. In fact, I was all set for a day of rest, a time of worship at church and some time with family. And then just as we took road turning into the church - the Call; “Could you come over to the hospital, Mr. V is not doing very well.”

 

Mr. V was a 42-year-old well-educated businessman admitted with late symptomatic AIDS. He had been diagnosed as infected with HIV, two months prior to this when investigated for a fever of unknown origin. Except for the fever he had been doing well till then, working at his job and taking care of his family.

 

Now overridden with despair and rejection, feelings of guilt and a loss of will to live, from the time Mr. V learnt of his HIV status he had not left his bed.

 

When he had come to us, he had had extensive TB, CMV ulcers in peri-anal area, extensive HIV neuropathy and possibly pneumonia - all developed with in span of two months.

 

I walked into the ward after an hour’s drive. The predominant thought being ‘what I would convey to his wife, if Mr. V was dying.’

 

On reaching his bedside I realized that Mr. V was not doing too well, though there had not been much deterioration from what we had observed the previous evening. He was disoriented and unable to comprehend what I was saying. It was clear that he was slowly deteriorating. I felt it was only right that I now prepare his wife for the inevitable. 

 

Married 15 years ago, Mr. and Mrs.V had married against the wishes of both their families’, since they came from two different castes. Now diagnosed as infected a day after he was diagnosed, Mrs. V, could not bring herself to accept the fact that her husband for whom she had left her family and close relatives had been unfaithful to her...and had destroyed her life too.... She was there only because her cultural customs compelled her to care for her husband. Through her words and attitudes, she had made that clear right from the start.

 

However, the past 6 days in the hospital proved to have had been a different experience for Mrs. V. She had opportunities to mingle with other women who had similar experiences, she had time at hand to talk thru’ issues with many of the staff, and she had access to stories from the bible, which she could read. There had been some rays of hope but there were still many issues that remained unclear. She decided that now was a good time as any to bring them up….

 

“Why should a man like V live. Why are you all struggling to keep him alive? Can’t you “mercy kill”? He is full of guilt, he is no use to anyone, why prolong his life” … was her question. She was quite clear what she would do if she reached this stage. She declared, “I will never allow anyone to care for me…. I will see to it that I take my life much before this happens…”

 

I found I had no easy answers. My training as a physician had not prepared me to answer any of these questions. I tried theological arguments with my limited knowledge. Even my Christian experiences seemed inadequate to answer these questions. I came away almost agreeing with what she said though not expressed ….

 

It was 12 mid night the same day. Another call found me at the center again. This time for another patient. Mr. R now presenting with cardiogenic shock secondary to a HIV cardiomyopathy. He had been in and out of the hospital for the last 6 months. 

 

Walking into the patient’s ward, I found Mr. R in severe cardiac failure and shock. There by his side stood his wife, Mrs. R. With a story very similar to that of Mrs. V. the only difference was that it had been much worse for Mrs. R.

 

She had borne the brunt of his abuses, curses, and even physical torture by Mr. R, even in his unwell state…. whenever he had the strength, that was…. But here she was now, massaging her husband’s legs and trying her best to make the suffering tolerable in any way she could…. 

 

My glance fell upon the next bed. Mr. V. He was crying in his sleep, out of pain. Mrs. V was fast asleep beside him, oblivious to the pain her husband was going through.

 

I had walked in with questions lingering in mind from the morning discussions, asking myself “Was it worth all the effort?” It suddenly dawned on me… “Yes, it was worth it. If Mrs. V could become like Mrs. R suffering, struggling and in much emotional turmoil, but at peace with herself and in the fact that there is a God who cares…it was worth the effort.

 

Is this not what health care should be about? Transformed lives becoming channels of transformation for others! I hope I will meet Mrs V soon too! I hear she is doing well too… 

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