Returning with a brief update, and thoughts on brain bank

So, it’s been three months since my last blog entry. This, after I started the year with a daily entry for one whole month! Ah, well. In software project management, there is a saying: How does a project get to be a year late? One day at a time. That’s what happened here, too.  And after the gap crossed a month, I told myself every day, what difference will one more day make? So it crossed two months, and almost crossed three months.

The last three months have been hectic for me, but dementia and caregiving have continued to form a major part of my life. If anything, the share of my time and energy in these has gone up. It’s just that I could not gather my thoughts enough to make a blog entry.

Let me start with one major event in dementia, the World Alzheimers Day, observed world-wide on September 21. The events included a memory walk, presentations on dementia, and an interactive session with doctors who talked about dementia and answered questions. And Dr. Shankar gave a presentation on Brain Bank and its importance in research.

The availability of human brains is very important for research. This is one area where it is not possible to extend findings from other primates because human brains are so very different, and also because we cannot really design tests to understand memory loss or decline of cognitive ability in primates. Dr. Shankar talked about how, while there is a lag between the first glimpse of hope in research and the medical treatment being available to public, the Brain Bank has already helped researchers discover new things about how the brain works, and translated this into advances in treatment.

I have pledged my brain, but my concern runs deeper than just pledging my brain–I have been talking about the brain bank to many friends, and trying to understand why people hesitate to come forward to donate brains. A friend who had attended the presentation by Dr. Shankar told me how she was very inspired to pledge her mother’s brain but the family was against it because the mother, long ago, had said she wanted all the normal Hindu rituals performed after her death and they felt this would compromise her wish.

I see their concern. I appreciate it. And I hear this concern from too many people I talk to. It makes me think.

The concept of brain bank is a relatively new one. Donating a brain for research is an activity that will benefit several people, and is therefore an act of generosity. Surely it is a work of punya, worthy of anyone who is religious? I am not sure that it in any way compromises the religious afterlife of the donee or the relatives. I do know that Dr. Shankar says that all major religions (definitely including Hinduism) allow it. Yet, people who have to take decisions that are major and that can be questioned by relatives and friends, feel unsupported and defensive about this, as if they are in some way doing something that would detract from the peace the loved one will get after death.

I really wish more religious leaders would come forth and explain this point.

My knowledge of religion is moderate, and of rituals around it patchy. But I do remember how clearly the Bhagwat Geeta talks of the soul not being affected by fire or water or sword, of how it casts off a body like a robe and takes the next one. Does donating a brain after death affect the soul, then?

A few years ago, my cousin brother died in a horrific accident–he was run over by a train. He was found near the tracks, dead from bleeding, his entire lower body absent. He was cremated with full rites, and I attended and participated in the ceremonies being a close blood relative. No one, not even in a teeny-weeny whisper, ever expressed any doubt that the incompleteness of the cremated body would in any way affect the peace of his soul.

Accidents happen. People are blown apart by bombs, they are crushed by tractors. They lose limbs, their skulls are crushed, their bodies are blown into pieces so small they have to be identified by pieces of cloth and shoes found on bomb blast sites. The indestructibility of the soul is a great comfort to the mourning friends and relatives because we feel that the essence of the person has not been touched by this mortal blow. We take comfort in what we hear of and know of the soul.

How, then, does this square up with the fear some people have that a donated brain would  compromise the journey forward that the dead person has?

A few decades ago, when the eye bank movement started, a lot of people talked against the removal of the cornea. The concerns on this have faded away as awareness has spread. While many people, traumatized by the death, may forget to donate the eyes, the opposition in principle has substantially reduced. Perhaps the same will happen to the concept of brain bank as awareness grows. I certainly hope so. A person’s eyes can give sight to two people. A person’s brain, used for research, may result in a find that will bring forth a medicine that will help thousands, millions of people. Surely worth it, no?

I have another thought on this, and it concerns my father’s death, 12 years ago. As with all deaths, we were not really ready. We went through the ceremonies in a haze. As per convention, I asked a priest at a local temple to come for the prayer meeting to address friends and relatives, and also for the havan to be performed on the third day after the cremation.

At the prayer meeting, this young and energetic priest, well-read, articulate, talked of the soul as described in the Bhagwad Geeta. It was a very well-delivered speech, consoling us about how my father’s soul lived on, and would always do so. Two days later, this same man, at the havan, described elaborate rituals without which my father’s soul would remain hungry and have no peace. On this occasion, the soul seemed like something that ate and drank and was very vulnerable. It just didn’t square up with what he had talked about on the previous occasion, a discrepancy my son (then 12) noted, as did I– but no one in the audience did. It was like one set of switches had gone off.

I have tried to understand this apparent contradiction from a number of people who are learned about religion, and also people who perform all prescribed rituals on all occasions and also attend classes in Geeta and chant it every day. No one has managed to direct me to the underlying principles that provide the consistent fabric where both these fit in. I am sure the religion is vast and rich enough to explain how both are true– if only ordinary people could understand, it would be so much easier to decide on things like whether or not they want to donate organs like the brain for research.

We make decisions and act based on our interpretation and our scattered knowledge. Many conventions and rituals carry on through the ages without being evaluated in the newer contexts. Some may be true to the underlying religion, and some may not. After all, people several centuries ago did not have to decide whether or not to donate cornea and brains, and the conventions therefore neither include nor exclude these specifically. How these donations agree with or contradict the underlying principles is for senior religious teachers to address and explain, so that those who wish to do what is right for their loved ones can act with full faith and with confidence and do what is generous and right.

This also brings me to the concept of   daan (donation, charity), which gets a lot of prominence in many Hindu mythologocal stories. We have kings who give away their kingdoms, even offer their head for that last step when their kingdom is exhausted. They give up their sons and wives (though I don’t quite think they should be treating sons and wives like property 🙂 We admire people who are daani (generous).

Surely, that means donation is accepted by religion as good? And if the soul is indeed indestructible, why not? Remember, donating a brain for research is an act of generosity, of daan.  Perhaps, as persons who want to do what is good and right, we need to find out more about this and act on that knowledge instead of assuming that the rituals are incomplete and ineffective because the brain has been donated. Let us not make unsubstantiated assumptions that hamper research that can benefit so many people.

This has been a long post, so let me consolidate below my reasons why I feel strongly about brain donation.

Currently, there is no cure for Alzheimer’s Disease, and other irreversible dementias. Treatment is usually only possible in the earlier stages, and focuses on reducing the impact of the symptoms; it does not remove the condition, or even slow down the progression. The causes of these medical conditions are not known, and no clear strategy is available to prevent the onset. I therefore see research on the brain as something of utmost importance. I think we need to contribute to it in whatever way we can, even if we are not medical researchers.

To study the human brain and find solutions for problems, researchers need access to human brain tissue, because our brain pathology is different from that of other mammals. Studying rats and monkeys is nt enough.

Our brains are donated only after we die; confirming our intention for brain donation does not affect our quality of life in any way. But it may improve the quality of life for many others, including people we love and care for.

I think the cause is important enough to make informed and thoughtful decisions. Discuss with your family. Think. Consider doing what is right and generous. Contact the team at the Brain Bank, NIMHANS, Bangalore.

Remember, researchers need all types of brains, not just brains of those with problems. They need normal brains to compare with, so consider enrolling yourself and relatives and anyone who is willing. Carry the brain donor card the way you carry your eye donor card.

A related, earlier post can be seen here: Medical Research, Brain Banks.

Important Note: When my mother died in March 2012, I donated her brain; a description of my experience of donation can be seen here: Impermanence, Death, Closures and Continuity through Body Donation.

A comprehensive FAQ for various types of donations, including brain donation, is available here: FAQ on Organ/ Body/ Brain/ Eye Donation.

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About Swapna Kishore
I'm a writer, blogger, and resource person for dementia/ caregiving in India. I have also been a dementia caregiver for well over a decade, and am deeply concerned about dementia care in India; on this blog I share my personal caregiving journey, my experiences as a resource person for dementia care, and musings on life, aging, dementia in India, and such sundries. More about me and the work I do for dementia care. For structured information on dementia, for discussions, tools and tips on caregiving issues, for resources in India, and for caregiver interviews, please check my website http://dementiacarenotes.in (or its Hindi version, http://dementiahindi.com). For videos on dementia caregiving (English and Hindi), check the youtube channel here.

2 Responses to Returning with a brief update, and thoughts on brain bank

  1. austere says:

    Can they take donations from outside Bglore?
    I guess grey matter can be chilled and transported as well.

  2. swapnawrites says:

    I hope it is possible,but you can probably e-mail Dr.Shankar for specifics. Great to know you are interested in this.

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