Walking the fine line between remembering the emptiness of the body and dwelling upon final extinction is often the fine line many who deliver medical care and care-givers travel. How do you be honest without being forlorn or slipping into causing hopelessness. Vimalakirti saw this difficulty and cautioned the person seeking to provide comfort. Not being dishonest about the disease or illness causes harm, being too brutally honest also causes harm. There is no one answer.
How challenging it is to deliver the news of the unexpected amputation of a leg, especially to someone who was vital and active only hours before, is unimaginable. Yet these news is unavoidable, it is clearly evident when a person looses their leg. Telling someone that there life will never be the same again, or that they will probably die soon is a difficult message to bear and hear.
I’ve sat in on doctor patient conferences where the doctor has no hope to offer the patient and that their death is a certainty, their liver and kidneys have shut down, their pain can not be removed but can only be minimized. All this from taking too much over the counter pain relievers whose brand names I dare not name. Of course the body exists in a delicate balance, of course the actions were relatively minor in comparison to taking more powerful dugs and misusing them. How could something so easy to acquire, so small, and so easy to consume be so deadly? How does a doctor say this, how does the family hear this, how does the patient live and die with this?
When I was taking care of young boys during the beginning of the AIDS epidemic I met and cared for some truly heroic and nameless humans. I’ve told this before in other books and said it numerous times in presentations, yet I can’t help but tell it again and again. A boy who had always wanted to play trumpet yet never got around to it, when given one weeks before his death managed to blast out terribly off key notes that rivaled any symphony composed by any great musician. How noble it is to choose who you will be when you die.
To wish to die clean and sober when you by all rights could certainly be excused using drugs or alcohol is still something I am moved by. It was important to many of these young boys to not die and addict, to not die an alcoholic. Yes, some might say well they were only clean or sober for a short while, and yes that’s true yet the short while for most was hell. The chose to not remain in hell, they chose to elevate their lives out of suffering even if they could not eliminate the pain and futility.
I don’t know how they did it. I was there, and I am not sure I could have done as they did. They had no support, other than my presence and my witness, most had been abandoned by friends and family, and certainly society had forgotten them. They taught me so much and I am I hope a good bearer of their life stories. These boys knew they were going to die, they were going to die alone, they were going to be forgotten, yet they felt from some deeper place in their being that they were the ones in charge of how they would live and die in all of that.
The last time I saw the AIDS quilt it had grown so large that the whole thing could no longer be displayed in one place. To walk along and read the memorial squares with stories in words and pictures was a truly emotionally heart wrenching experience one I’ll never forget, or hope I never forget. The boy’s lives I witnessed the stories the lived were only a small fraction of the number of times these same types of stories were repeated. I remember one boy who wanted to learn to speak Spanish and did actually manage some phrases before he died may seem trivial, but nothing is trivial when you are dying.
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When you are dying. Think about that, these young boys had days and weeks, they knew death was certain and soon and they chose to live. How many of us forget we are gong to die, ignoring our own death sentence day by day as if forever was a gift we would receive.
The body is relatively inconsequential when you come right down to it, it is what we do with that body that makes it of value. Life is truly precious, that we have by the very fact I am writing this and you are reading it, but your lived life, your story, how you fill your days, now that is of consequence.
Vimalakirti advises us to remind the ill of their harmful past actions so these are not repeated but not to either simply consign them to the past or ignore there valuable lessons in the present and into the future.
Back at the beginning of the AIDS epidemic no one knew how the disease was spread, there were all sorts of wild stories. In providing care I did engage in what would be called risky behavior. Not wearing or even having gloves and handling blood and puss soaked towels is not a practice you will see in a hospital today. I had not choice, old towels that I’d rewash, any old rag was all that was available. Who had money to go out and buy all new clean much less sterile items? I certainly did not. Lending my razor and then using it again myself, even if electric carried certain risks. Being a nail biter, and having bloody cuticles and hangnails meant I had open wounds myself. Breathing the same air was thought by some to be a way the disease spread so there was that.
So now we know the ways AIDS and many other communicable disease are spread, and what do we do with that information. Many choose to follow safe best practices, yet many engage in risky behaviors. Humans will walk both sides of that sidewalk for as long as humans exist. We are ultimately responsible for all of our actions, and we have the capacity to learn from our past actions, even if we don’t have the necessary internal what-ever-it-is to live differently.
Not facing the realities of our behaviors is different from turning those past behaviors into a weapon by either the patient or care-giver. Yes mistakes were made, and they can not be undone. While the past is truly past, the effect of that past lingers and the lessons of that past can be acted upon. The past is not nor should it ever become a weapon welded by the ego/self, nor by others. No fair beating anyone up with the past.
Vimalakirti comes back again to the message of reminding the patient of how they can benefit others from their situation. This is again turning the illness into a teaching to eliminate the suffering of others. I know that I stated in the beginning that the illness being focussed on in this book were not those taken on for the purpose of instruction and what I am saying here is that the illness one has should be examined for the lessons the patient can learn and then share with others. Again this is first residing in forbearance and then stepping into the realm of humanity and lifting other up out of their suffering.
The thing I disliked hearing the most either from patients of care-givers were things like, “well I don’t have it as bad as some” or “compared to other I’ve a lot to be thankful for.” It is not healthy to base one’s assessment of one’s life on the misery of others. If the only way you can be content is if there are other worse than you then your contentment is on shaky foundations. I wish people could eliminate these self-harming phrases from their thinking.
It is possible to be happy without others being unhappy. It is possible to be sad without others being more sad. It is possible to be in pain and others to be in pain also. There are many possibilities where you do not need to diminish your experiences. There are may ways of being without devaluing your feelings or your life, or even others. Your feelings and experiences are real, important, and worthy of you. They are your story, even if not your whole story.
Vimalakirti says that we should remind the ill bodhisattva of the great fortune they have created and experienced through their religious practice and in the face of the reality they are currently experiencing to not give way to gloom or worry.
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