Volunteering at Hospice - the journey begins

"For wounded people to be wondered-at is sometimes enough, a grace." Howard Thurman

This week I started a very important phase of my life. At least, at the moment, I think so. Tomorrow I finish three days of intensive training to be a volunteer at Hospice. After this, I will be deployed, when needed, at homes of patients to assist with various non-medical tasks. Tasks may be as simple as reading to the patient, writing letters, talking, holding hands, listening, playing music, singing, making art, or even last vigil (that is waiting in the room for the patient at the very end). I feel I have the fortitude needed for being by the bedside of a patient comforting them through their pain, and to be a friend to the grieving family for the duration of this difficult time.

On this decision, my friends have expressed a variety of emotions. Some are shocked that of all the fun things I can find in this world to do, I am choosing to spend my free time with the dying and the grieving. It is weird, I agree. Some are calling me an angel with a beautiful heart, which is an exaggeration. I actually accept both these reactions on equal footing. While I do not need to give an excuse for this decision of mine, I think can try to explain, may be some of them will understand. There are many reasons for me getting into this, and all of them are very personal, even selfish to some extent.

In 2012, on Valentine's Day, my mother passed away in India, after a very short battle with cancer of the unknown primary, she was only 61. It was a devastating experience for my family. My father is still acutely grieving and we, my sister and I, cannot figure out a way of helping him out of this depression. During my mother's brief sickness, I spent about two months in Kolkata, running pillar to post, managing her treatment. When she was pronounced Stage 4 and Terminal around Christmas/New Years 2011, I started researching palliative care and found next to nothing in Kolkata.  Most doctors in Kolkata were balking at the suggestion of keeping Maa at home, surrounded by family and loved ones, during her last days, as she wanted. The typical practice is to keep the patient in the hospital, probably in the ICU, connected to as many gadgets possible, and forced to stay alive as long as possible, with no respect for her wishes and not granting her access to the love and affection of family during her last moments. Against all odds we managed to keep her home, with some kind doctors helping us in the process. But during that whole painful ordeal, I was wishing that we had hospice care established in India, whence we could focus on our own acceptance of the impending event and grieve peacefully, and leave the medical issues in the hands of established palliative care professionals. After Maa passed away, deep inside me, I felt a need to understand how they run such an organization, and a wish that someday we can have one in India - something my mother could not avail, but may be future generations can?

When a patient is deemed terminal, I feel the doctor's duty should change from "trying to cure" to just "care". In fact, I believe that any doctor's duty is always "to care", for "to cure" is not really in their hands. Whether a patient gets cured by the treatment dispensed often depends on situations and issues way beyond the control of the doctors. The doctors should just focus on caring for the patient, to make sure that the patient (and their family) is comfortable with the diseased situation. But India has a long way to go in this regard, cultural emotions run deep along with financial interests. The general attitude change has to happen, and I doubt that it will happen in my lifetime. But I will try, if I ever get the opportunity to help change the mindset. And unless I volunteer here, in a fully functional hospice system, I will never know where to begin.

There is the other aspect of wanting to serve in hospice, it is a more spiritual reason. I want to be face to face with old age, sickness, and death. I want to see them in front of my eyes and understand in the deepest possible way. The simile I give friends is to "gently press my heart against the arrow". Arrows may come at us anytime, but to train in strength, you have to practice being close to it, so you are not afraid. I also feel that I have a lot of compassion to give, and this may be the best place to do so, may be the need is acute here? At least that is what I feel right now. Will I be successful? I don't know, but we will find out.

My entire life has been through a very grisly grinder, and I have managed to survive. Especially in the last year, I feel I have been able to grow more than my preceding 38 years. I have a long way to go, but I feel I have become increasingly perceptive about my feelings and deep rooted intentions. I have learned to gently allow emotions to surface, and recognize them for what they are and observe them objectively. Am I an expert at this yet? Of course not! But I am way better than I ever was in the past. I credit this to my meditation practice. And through this phase of my life, I have also been able to learn new things about myself and give them permission to express, like my interest drawing/art, and recognizing that I feel the most pleasure in serving. And for the latter, this hospice assignment, I feel, will be a good outlet. I had the desire to serve burn up in me many times in the past, often to the extreme discomfort to my family as they felt that I was being unduly generous and to their disadvantage. So during those years I had curbed this desire and focused it towards family, often without any regard to self care and my personal happiness. I was under the illusion that I was being selfless and sacrificing "for love" and "duty". That was plain wrong and a very stupid choice. I know that now. Well, we all make mistakes, out of ignorance, and it is perfectly all right. It is human to make mistakes like that, to falter, and learn. I think I have clarity of vision with respect to myself now and the confidence to act on my personal aspirations.

Those who have known me for some time will point out my passion for Water for People. For the last 15 years, I have been quite active in that organization. In fact I owe immense gratitude to that organization for inspiring me to become an environmental engineer in the first place. In 1996-97, when I was a young disenchanted undergrad training to be a civil engineer, I met Dr. Amal Datta, who had just received a tiny grant from Water For People to build an arsenic removal system in a remote village of West Bengal. He showed me the design, we built the prototype in the lab, then with the help of the villagers, installed it. Today, almost 20 years later, that first unit is still working and there have been 220 more such units installed, and the program has spread to the neighboring state, becoming the most successful program for the organization. I am very proud of this fact. But more than that what I remember is how pained I used to be after the site visits. I watched poor day-laborers at farms, suffering with Stage 2/3/4 cancer with no treatment, going to the fields and working everyday, till their last breath, to feed their families. I would return from these trips and cry for days, agonizing on what a waste my life has been, that I could not help any of them. Can't I help save one life? What if I leave my studies and work with an NGO to help them? Why not? What else is important in this world? What is the value of life? Is a day-laborer's life less important than that of the Ambanis or Tatas or mine? My teacher often invited me to his home, and both him and his wife spent hours counseling me. They kept telling me that just quitting and working at the villages will not solve the problem, I need to go to the depth of the issue and help solve it. That as I grow up and see more of the world, I will find a way to help out. They believed that I had a bigger purpose than just being a foot soldier in rural West Bengal. So, I came to the US, got my MS in environmental engineering, got married, and fell in the rat race of career building and married life, and of course, the glorious pursuit of the "green card" for my husband. Not that the urge to serve did not raise its head in the ensuing years, I managed to channel it through committee work and fundraising activities for Water For People. I remember, in 2003-2004, when Sudan was facing the political and environmental crisis of the century, I was very close to quitting my good job and joining MSF. I used to spend nights agonizing in my tiny apartment in Mission Viejo, again pondering on the purpose of my life. But my prescribed role as a daughter/ wife/ professional/ provider overruled my emotions, and I stayed put. Finally after all these years, my life seems to have opened up with space and time to allow me adequately express my desire to serve. I am going to start with hospice and see where it takes me. I am not giving up Proteus, or my career, I am just investigating this desire of mine to serve for what it really is and testing it against the hardest rock possible.

Nothing in this world is set in stone, everything is constantly changing. My feelings, my intentions, and the path I am taking will change over time. I have no illusions about this. I am curious about old age, sickness, and death. I am curious about testing my emotional strength against these raw realities of life. I am curious to learn if I can grow any stronger. I am curious to see if I can serve without developing ego. I look at this part of my life as a discovery into self, and if in the process I can manage to help/touch few other lives, so be it. This is a two way process, I stand to gain as much from this experience as the people I may be able to assist.

The Road Not Taken - by Robert Frost
 
Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;

Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same,

And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I —
I took the one less traveled by,
And that has made all the difference.