The House of Representatives will soon be controlled by esteemed politicians who (for the most part) deny the phenomenon of climate change, deny the scientific facts of evolution and natural selection, and deny that our gay brothers and sisters are, you know, equal to everyone else.
I mention these facts as preface to a commentary I wrote in 2005 regarding the sad tale of Terri Schiavo, the Florida woman who languished in a nursing home for 15 years in a persistent vegetative state. Her husband Michael tried for 7 years to fulfill her wishes to prevent 'heroic measures' to be used in order to keep her alive.
Naturally, the Republicans in power at the time screeched and pitched and foamed over the issue. They condemned Michael for his choices, questioned his morality and intent and even convinced then-President Bush to cut short one of his numerous extended vacations to sign a bill that sought to interfere with the rights of private citizens Terri and Michael Schiavo.
I wrote this commentary to try and emote how I was feeling at the time, because I was also deeply involved in a similar situation, albeit without all the publicity. I submit this now because I want people to remember that the Republicans all boast about being the party of individual freedoms, but will jump in your shit and screw you (us) over if your personal individual choices don't match with their narrow viewpoint. The more things change, the more they stay the same... how sad and pathetic a realization that is for me now, looking to January 2011 and the resurgance of the Right-wing 'moral authority'.
THE LONG PINK TUBE (2005)
As Terri Schiavo lies in her Florida hospice bed, slowly winding down a life filled with tragedy and loss, I am left pondering the reality that soon enough I, too will have to make decisions about life and death, tube or no tube, to be or not to be…. not for me, of course, but for my Mother, who lies in a Santa Ana nursing home with a feeding tube stuck into her belly.
I feel horrible for Michael Schiavo, and not just because his wife has become the central figure in the latest battle over whose morals will emerge victorious in our Red vs. Blue Nation. Michael has made a commitment to do for Terri what he knows in his heart is right, what Terri asked him to do, no matter how many people call him a murderer or a lousy husband or an evil person. The law is apparently (supposedly) on his side, but that doesn’t matter to the ‘Let Terri Live’ zealots who have decided they know better than he does, regardless of how little they really understand his situation and what it means to him emotionally, philosophically and spiritually.
I know what Michael Schiavo is feeling, albeit to a lesser extent. Over the last two years, my Mom’s declining health has seen her go from living independently in a small duplex apartment and into a series of hospitals, assisted-care and nursing homes. My role as her eldest son (and the only family member she hasn’t yet burned) has mutated into sole guardianship for her, or ‘representative payee’ as the Social Security Administration now officially lists me on their computerized records. For good or ill, I am now a specialist when it comes to government entitlements and benefits, MediCal issues, nursing home administrators and the relative costs of adult diapers.
Mom’s life story has been run, and five decades of alcoholism and cigarettes and multiple strokes and falls and broken bones have left her debilitated and frail, reduced to a bed-ridden 75-lb. shadow of her former self. Her litany of aliments reads like a search result from WebMD.com – hypertension, diabetes, osteoporosis, failed kidneys, failed liver, anemia, aspiration, stroke-related loss of her arms and legs, inability to swallow food or fluids – a real witches brew of maladies.
On top of everything else, her new wheelchair has arrived just in time to roll her down the Alzheimer’s Highway. Her journey includes reverting to her native Mexican language, loss of recognition for her remaining family and the blank stare darkness that we should all dread while we can. The Long Pink Tube continues to flow nourishment into her stomach and, for the time being, she is still mostly awake and alert enough to smile at me when I visit her twice a week, although she doesn’t remember the last time I visited and it takes her a while to remember who I am and why I'm sitting at her bedside.
I think of Michael and Terri Schiavo a lot these days, especially after my visits to Mom when she has been crying and flailing and calling out to her older brother who died five years ago, or just gives me ‘the look’ and moves her mouth with no sounds coming out. How long will her body survive when her mind has totally gone away and left her as an empty shell, her stomach sucking on that Long Pink Tube and giving her another day/week/month/year of empty existence?
I think to myself, “Self, how will you deal with the decision on whether Mom should continue to live a lost life or to die with dignity? When is too much life enough? Isn’t she really already gone, save for the final series of days filled with tears and anguish and heartache?” The decisions to come are MINE ALONE… I am by-default the person who will have the buck in hand when it stops. Neither George Bush or Tom DeLay or Randall Terry or Jeb Bush or the United States Congress has a say in the matter, and I have the official paperwork to prove it.
Only those who are forced to experience the sorrows that end-of-life decisions can bring will know how deep the burn can be… just look into Michael Schiavo’s eyes during yet another television interview and see the sadness this whole insane saga has burrowed into his soul. I see him looking at me from the TV screen and I can see myself in his eyes, grappling with the same choices he’s had to fight to make. Only difference is, my decisions will go totally unnoticed and will be made without the glare of notoriety… at least I have that to look forward to.
I love my Mother more than I can say, and will do what I feel is right for her when the time comes, especially with the knowledge that her ‘Do Not Resuscitate’ form is already signed and on file at Nurse’s Station #1 in Santa Ana, California. I also know that as she slides into the cerebral ether, she can trust my judgment as her #1 Son. Right now, for both her and me, that’s all that matters... everyone else can just bugger off.
Mom passed away quietly in the night a few weeks after I wrote this commentary, but earlier that day my wife, myself and my Aunt (Mom's former sister-in-law and best friend) spent several hours at her bedside, talking and crying and laughing and reminiscing about Mom's life and struggles. Apparently she'd had another stroke the night before and was unconscious for the entire time we were there, but that fact is that WE WERE THERE, whether she knew it or not. I didn't have to make 'the decision', but clearing out her belongings the morning after she died was an exercise in bemused sorrow and guilty relief.
I shudder to think that once again we'll see a revitalized Republican Party inserting their skewed vision of morality into our lives, telling us who we can or cannot marry, who is or is not a 'patriot' or an 'American', or what private and personal medical decisions can or cannot be freely exercised. They are the same people who were screaming last summer about death panels and unplugging Grandma and branding universal healthcare as socialism. They are the ones who decided they knew best for Terri Schiavo over the legal, ethical and moral perogatives of Michael Schiavo.
I think of Mom every day, and I miss her terribly... her nasty but funny sense of humor, how she used to flip me off as I was leaving her bedside, how she would laugh and gag as we'd watch her telenovelas with the sound off while I made up my own insane dialog. Those were the times when I knew that she knew that I would make things OK for her when she was no longer able to.
R.I.P. Alicia Teresa Macias
(Image courtesy of www.mrdestructo.com)