Worse than Death

(C) Dr. Rajas Deshpande
“Doctor, I have started to die. Can you help me somehow?” he asked, calmly.

In his late twenties, a handsome young man, well dressed, but with a certain painful gloom upon his face that was a mismatch to an overall nice and clean appearance. What could this be? I started thinking, hoping he was wrong.
Then his shoulder twitched, and arm had a slight jerk. A pang of suspicion bit my heart immediately. He confirmed it in few seconds. Those who take life for granted are often so full of anxiety, and here he was, who had initiated a countdown to his own death, talking to me in a low but clear voice.

“Doctor, I have been diagnosed with Huntington’s disease over 7 years ago” he said, “Till now I had only these jerky movements. Now I have started having some mood problems and also memory issues. My parents died in an accident when I was three. My uncle’s family cared for me till I could go to a boarding school. I stay alone in a rental apartment, I work in an IT company”.
Examination and review of reports established that his diagnosis was correct. There is no treatment.

This illness of brain degeneration starts with abnormal movements, then causes loss of memory and other cognitive functions, mood swings, depression, finally causing complete immobility and usually death ensues due to blockage of windpipe because of food while swallowing. A patient usually survives less than 13-18 years after the diagnosis. Some commit suicide.
What do I tell someone aged 28 who knows he will definitely die soon?

Yes there are research options and support groups. Yes I can send him to a professional counsellor. Yes I can use some mood stabilising medicines and antidepressants. 

But can I emotionally detach from this event as a doctor? (C) Dr. Rajas Deshpande
Diagnose and treat with empathy, educate and move on. Don’t take home the burden of your patient’s illness. Don’t get emotionally involved in your patient’s lives and problems. Never. But is that possible?
Shall I ask him if he has any bucket list of things he wants to once experience, before he forgets who he is? Is there something there that I can help him with? Has he planned anything about his life when he is mentally or physically disabled?
I told him that some medicines can help him, and wrote a prescription. Also referred him to an expert counsellor.
What would I do in such a situation? What is it that I would like to hear from the doctor, knowing the obvious too? What is so important in life when one knows that there are only a few years remaining? 
Those who have the luxury of ignorance can laugh and superficially answer. Those who answer immediately have seldom used thinking. Those who are assured of their health have changing answers. 

But those who know it?
I decided to ask him. (C) Dr. Rajas Deshpande
Next time he visited, he told me that he has resigned from his job, as he had problems dealing with the responsibility. He could not ride his two wheeler too, he had sold it off.
“I am going to my ancestral village, doctor. A dharamshala (religious sanctuary) has agreed to allow me stay and food, and help me as much as they can. I am also willing to donate my body for research, so at least others don’t suffer this. But I have to finalise yet”.
In India, just as there is no scope for genuine research, there also is complete lack of any infrastructure for the care of such patients.
I decided to ask him what troubled me.

“Is there something you wanted to do?” I could not bring myself to say “before you go”.
He tried to smile. His eyes welled up as he thought about the question.

“Yes, Doctor. I wanted to feel someone loving me madly at least once. In fact I had a girl in my office whom I liked. I think she liked me too. But then my diagnosis was confirmed and I didn’t want her to suffer, so I never told her. I met her before resigning, and told her the truth”.  
“Everyone will only degenerate,” he continued, “I am ready to see myself degenerate early. But the one purpose, the one good memory of life that one can wrap himself with when facing the decline, is love. Everything else only reminds of loss”.Dr. Rajas Deshpande
Then, wiping his tears and sobbing, for once, openly, without the restriction of pride, he held my hand, and said, “Thank you doctor for all your help. I came to know just now, that not having loved is what I regret most. It feels worse than death. Even if I had felt true love once, I won’t have regretted this early death”.
He had only echoed what every particle, every corner and every breath of life always reminds us of, while we keep on searching for everything else.

Dr. Rajas Deshpande

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