Burnt out burn on

We see quite a bit a new Hansen’s Disease (Leprosy) at the hospital where we are. Three to four new cases a day, for a disease supposedly “eliminated” in India and across the world! We see new pauci-bacillary, many multi bacillary, and very many with severe reactions. We come across many partially treated, some possibly resistant ones too! For an old disease we hardly have any new answers. The same old treatment since a few decades. Well the purpose of this blog was not to complain about the “neglected tropical disease” but to make another point!  But I couldn’t control my habit of being a complainer when it comes to diseases of poverty!

The most difficult decision which I find in treating leprosy is to decide, if the patient still needs treatment or is it a burnt-out case. People come after having taken treatment for a few months, with no bacteria detected in the smear, or broken bacteria seen – are we dealing with a partially treated case or a fully treated “burnt out” case. The patient strongly feels he or she has the disease since the sensory loss persists much beyond treatment. In many situations sensory loss is permanent. To help the patient to understand that they do not need treatment but are only carrying scars of the illness is a challenge.

The burnt-out state is a challenging state. The factors which led to the diseases (Mycobacterium Leprae) are no more there. Due to illness detected late, the nerve damage and loss of pain has become permanent and patient will carry the disabilities throughout his or her life. And if not careful, nerve damage and lack of pain will lead to unnoticed injuries and non-healing ulcers every now and then.

Something which Paul Brand and his colleagues from Vellore described a few decades back! Paul Brand and co author Philip Yancy in the book “The Gift of pain” after describing the pain as a gift to human body, writes  “If I held in my hands the power to eliminate physical pain from the world, I would not exercise it. My work with pain-deprived patients has proved to me that pain protects us from destroying ourselves. Yet I also know that pain itself can destroy, as any visit to a chronic pain center will show. Unchecked pain saps physical strength and mental energy and can come to dominate a person’s entire life. Somewhere between the two extremes, painlessness and incessant chronic pain, most of us live out our days.”

So what is the answer – detect disease early, before it one loses pain or sensitivity – and makes permanent damages. Before it can become a fully treated but burnt out case with residual effects of lost pain and sensitivity! Which is tough since there is no system (on paper yes but not in practice) to look out for those who are slowly getting damaged, those who are reaching the burnt-out state!

An interesting novel written by Graham Greene in 1960 is “A burnt out case”. The book summary is described like this “When Querry, a world-famous architect finds he no longer enjoys life or takes pleasure in art, he sets off on a voyage. Arriving anonymously at a colony in the Congo, he is diagnosed as the mental equivalent of a burnt-out case, a leper mutilated by disease and amputation. Querry slowly moves towards a cure, his mind getting clearer as he works for the colony. However, in the heat of the tropics, no relationship with a married woman, however blameless, will ever be taken as innocent….” Actually, his past catches up to him multiple times, though he had lost all sensitivity.…

In life too – how true! How many are there around us, whose sensitivity is getting dulled and damaged by the confusing contexts, disabling myths, and diseases of inner poverty? How do we protect and preserve the sensitivity, preserve the pain and prevent compassion fatigue – “the physical and mental exhaustion and emotional withdrawal experienced by those who care.”

How many are there around who have reached the burnt-out state and need to be careful their whole life to protect their own souls! How many are there who have burnt out and are carrying the after effects of the damage silently without coming out ever in the open?

What would it take for us to make an early diagnosis, recognizing the symptom early? The symptom not of pain, but the loss of pain, the loss of sensitivity?

What will it take for us to become a community and nation that recognizes early the lack of pain within and around us? What would it take for us to become a community that cares for burnt out friends around us!

There is an interesting picture in the Bible, Exodus 3, the bush catches fire, but it did not burn out. “Moses saw that though the bush was on fire it did not burn up.  So Moses thought, “I will go over and see this strange sight—why the bush does not burn up.”  A friend once told me – this fire was a different one – one that attracts people to it because the fire will burn on and will not burn the bush out. And he concluded saying when the fire is from within, you do not burn out, but you burn on….

A picture for us to hold on – how do we help each other to burn on and not burn out….