Tuesday, November 4, 2014

My passion....My soapbox

Her name was Merry. I’m not even sure I spelled that right. She was almost 20 and had been unable to do anything alone for the past few years. She was dying of a tumor that had metastasized from her spine. I looked at her as she lay in her hospital bed in a pink lingerie nighty. A nighty most women her age would be using to start a life not to end one. Her weak and formless body slipped around and didn’t even fill out the nighty, but it was all she had to cover her nakedness. It didn’t matter to her. She was fully cognizant of what was going on even though she couldn’t see, and the tumor had taken most of her ability to converse, and control bodily movements. She died two days before I could get back for the funeral.

In the course of one year, I have seen far more tragic deaths in the small community of Palmar Arriba than I have in twenty years following at the heels of my father in church work. I have seen death that tragically left a disabled son behind literally in an empty house with minimal care and no ability to care for self. I have seen death that left four children as orphans in a foreign country without proper documentation of original citizenship to find work. I have seen death that left a mother no longer knowing if she could be deemed a “mother” since she no longer had a child. I have also seen death leave it’s mark upon the cross beam of a wooden home, as one claimed their own life by hanging. Death claims so many lives and leaves the living left to live on. 

I have been thinking a lot about Brittany Maynard and the whole raising of awareness of “death with dignity” and how in many ways our culture tries to glorify the grotesque by eliminating the perceived grossness. In other words, we sterilize and eliminate and neatly package everything. That is what we like to do best. We value a story that we can neatly put in a history book, concepts that we can concretely rationalize, and theory that can be solved. So, when we can’t do it, we must resolve it by eliminating it. For example; what is the cure for a terminal illness without a cure? A pill that will make it so that it wasn’t the illness that took the life, and so the illness can’t run it’s natural course. We outsmart the illness by killing the subject before it can run it’s full course. The humanitarian response is that we are compassionately preserving the person as they were and eliminating the unforeseeable future of pain, allowing the person to make a decision as to if they wish to be a martyr or if they wish to “die with dignity.” Surrender to defeat before the whole country falls. 

We used to believe that the winners were the ones who did not give up, now we glitz over and offer a way out of the long drawn out battle of death and call it; “death with dignity.” It is difficult to step back and have an objective perspective where my personal religious core values don’t take front and center in how I reason this approach to terminal illness. Being a Christian is who I am, it is within my identity. I can be no other, but I can see where a rational mind would need a rational explanation, and I feel sorry for them, but what we have here is not being called what it is... “ugly.” I’ll go out on a limb and call it as it is; sin, and we can’t think for a minute that Christian freedom is freedom to make a decision on ending a life. 

I have been trying to sort out in my mind what makes the death I have seen in the Dominican different from that in the states. When I first started attending funerals here in the Dominican, they were earthy. To be honest, I was afraid I would contract some sort of disease just from being present. Funerals here carry the weight and reality of death. They are disturbing, crud and there is no sense of dignity what so ever. The bodies are not done up and preserved as they are in the states. A funeral here is fast and furious as the heat demands a quick burial. As we all know, a body that is not embalmed will begin to decay, rot, and to smell. As time has passed and I have attended more and more funerals, the earthiness has not passed but my understanding has. These funerals may be without glamor, golden coffins, beautiful tributes of memory, but they do hold love. They hold love that survives death, and carries the loved one to the ground in a wooden box. It is a love that stands in the dirt and is willing make dirty the bottoms of their heels and trims of their robes because in the end, love itself is not packaged neatly but it is as strong as death. 

Now, funerals Stateside have become a difficult concept for me. They are sterile. As I listen to those defending the decision of Brittany Maynard, I can’t help but just feel sorry for the misunderstanding. We are trying so hard to preserve and protect some form of perfection in the states. An image of plastic. We consider a terminal illness that will result in the loss of control in bowels, bladder, and other faculties as a grounds for a decision to die sooner rather than later. So what is to stop us from allowing a child with a debilitating disability, fully dependent upon a caregiver from being allowed to make a decision to take their own life of for the caregiver to decide “enough is enough?” How do we rationally explain that we would permit someone with cognitive ability to decide to “close up shop” before the sun has gone down and not another? What stops us from terminating the life of another if we deem it not worth living or that it might cause more pain and suffering should it remain...oh wait...nothing has stopped us. What is to keep us from going down a path of every man determining for himself what deems a life worth living? Then again; we are on that path. 

 As I look to the poor economic, earthy conditions of the Dominican, I feel sorry for the States. Wealth has given us an idiotic idea that everything must glitter as gold, up unto our dying breath. We can’t accept flaws, and this includes a notion that we can’t accept that anyone might be wrong in a personal decision. We have adopted a “no no...they are fine...just leave them alone....it is their decision.” Fine; it is their decision, but when did we stop counseling, caring, and loving a person in a way that says; “it may be your decision but it affects me too because I love you that much” when did we start to place conditions on love that said, “I will love you till death do us part....unless we find out in five years that we have unreconcilable differences, or after 10 that you aren’t as beautiful as the day I married you” when did our love become so fickle that we would not endure in sickness as in health, remembering that part of the bad is what makes the good. Or as C.S. Lewis’ character played by Anthony Hopkins says in “Shadowlands;”  “Twice in that life I've been given the choice, as a boy and as a man, the boy chose safety the man choses suffering the pain now is part of the happiness, thats the deal.” 

Those who are speaking out for a right to a “death with dignity” still mourn the death of those who “died with dignity.” I have a theory that perhaps an organic death, as ugly as it is provides a process of letting go. Seeing a loved one suffering prepares the living and the dying for a better place, a brighter hope, and a celestial home. It allows the grieving process to be more natural and beneficial. We always suffer, but we suffer more when we respond in selfishness gilded as being “merciful.” We tell people they are brave for enduring with a loved one who chooses to take their own life because they no longer wish to be a burden, nor to suffer the pain of terminal illness. But, what if the caring for the terminally ill is a healing process for the well, and the sufferings of the terminally ill is a gift to those who care. Love comes from both sides; both suffer, but in the end, both receive and know a more full joy and there is more peace in the parting. We fail to understand that suffering produces character, perseverance, and endurance. We fail to follow the advice of those stupid motivational posters that promote strength, endurance, and perseverance in the face of difficulties. Sure we agree with them as long as what is produced is measurable, but when it comes to the end of life, where there is nothing left to do but die, we fail to see the value and merit in that, yet, that is where it all lies. 

Brittany had a chance to receive the care of her mother once more as a child in need. I have no doubt her mother would have relished the bittersweet opportunity to care once again for her only child. She had an opportunity to resolve and show her parents what it means to die well, perhaps not with dignity, but with love. She had an opportunity to recognize that goals are more than a bucket list of dreams and achievements, but can also be a natural running of courses and an opportunity to build character and perseverance, she chose not to. That was her choice, not her mothers, not even her husbands choice who she also made a choice to be “one” with.  

So this is the choice we wish to give society; To remove all pain. To remove all doubt, and to allow a person to be the author of their own story and death. This however fails to acknowledge that others suffer, others are strong where one is weak, and others can rise to the occasion and others are a part of the story. I’m not sure I believe in an autonomous society, or individual for that matter. We depend more on others than we realize. I pray America does not become so isolated and individualistic to the point of every man writing their own law, but then again, I fear we are already down that path. United we stand, divided we fall. We are loosing a sense of communal rejoicing, and communal suffering. We can’t reap the benefits of one without the other. This is why we fight wars together, and celebrate independence together. Shouldn’t it be the same in other areas of life? 
This is my passion and why this blog exists....to encourage the restless until we rest in Him.  

1 comment:

  1. Very inciteful post Kate! I do agree that dying is a process for both the person dying and the loved ones. When that process is interrupted some way, the grieving process is anything but normal.

    I know you know our specific situation, Kate, but for us the sense of community was very powerful. They truly lifted Joni and I up and helped carry us when we couldn't find our own way forward. A very wise man, that you know very well, taught us that it is very important for us to allow others to minister to us. As a result of that, we take every opportunity we can to help others in their time of need.

    We love you Kate! Thanks for this post!