What frightens me

[Emmet]

I've been a paramedic, a social worker, a Buddhist. I've worked in ERs, hospices, funeral homes. Dying doesn't frighten me.

 

What frightens me is a homeless guy I once met. When his wife got sick he spent and sold everything he had to care for her, quit his job to care for her; who else was going to? After the modern American health care system had thoroughly wrung him out and extracted everything from him but the marrow of his bones, she died. A very nice guy; I liked him, but all hollowed out inside; like the shell of a burned-out building so long after the fire that even the ashes are gone. Not an alcoholic, not mentally ill, just completely used up; a hollow, empty shell.

What frightens me is the financial devastation. Due to the high costs of dying in America, the Social Security Administration estimates that widows are four times more likely to live in poverty than married women. 49% of foreclosures and 62% of bankruptcies are directly caused by medical bills.

 

What frightens me are the survivors I've met; exhausted and consumed by shame for silently hoping as they walk into a modern American health care facility that their Beloved has died, concealing bitter disappointment to find them still suffering, and overwhelmed by guilt to find that they're actually relieved when the love of their life finally stops breathing. I've known people to carry that secret pain deep inside for years afterward.

 

What frightens me is the confusion and cognitive difficulties I'm experiencing. My brother-in-law died of cancer, including inoperable mets of the brain. After he died, credit card bills started arriving; it seemed that in the final year he'd led a double life, engaging in some uncharacteristic and sordid behavior. This shocked my sister and caused quite a bit of sympathetic consternation among my siblings, until my Dad observed; “How horrible it would be to have a disease that not only robs you of your life, but of your families respect, esteem, and good memories of you.”

 

What frightens me is memory. I remember my 87-year-old aunt; she didn't want everyone's last memory of her to be an open casket; her casket was closed, with a framed photograph of her costumed as 'Queen of the May' from her college days; young, healthy, happy. I've known so many people, bedridden and warehoused months, years, in the modern American health care system, their contractures straightened out by the snipping of tendons, lying in a shitty diaper in a Bedlam that reeks of ancient urine and the decaying flesh of decubitus ulcers, granuloma of the gastrostoma, persistent catheter UTI, aphasically moaning through cracked dried lips at the ceiling in terror, or horror, or pain, lying awake at night listening to their roommate do the same; someone screaming down the hall. I've seen people stiffly decerebrate, the grinding of their teeth their only way to express their excruciating pain. In their lucid moments I've heard people begging and pleading to die. I absolutely do not want to experience that, and I absolutely do not want that to be my Beloved's last memories of me; seared indelibly into her consciousness.

 

I'm not concerned with dying, but the way we go about it in America scares the hell out of me.

[Heartlight]

Emmet, you write quite beautifully.

 

Obviously I mean this in its purest sense.  You have expressed so well that the only other word to describe it would be eloquent, which doesn't quite reach the perfection of your prose.

 

It is a terrible thing.  You speak the truth.  I have pondered this myself, but not due to its likelihood looming, but because it seems like a twisted joke of life and understanding life has been foremost in my mind since death has touched me.

 

I hope you are sharing all of this with your mate.  If I were in the situation that you two are in, I would want to know.

 

There are no easy answers, and sometimes none at all.  And I know that you know that.

 

But as I read your concerns and fears, and was moved by how wonderfully well you expressed yourself, I thought, "perhaps there's something you could write that your spouse could publish posthumously?"

 

Part of me thinks this is a terrible thing to be saying... how could you speak about his death?  Aren't you here to share what good thoughts you can?

 

But as I read your financial fear and read your beautiful writing, that potential solution came to me and I thought that it belonged to you.

 

Plus, in the event that it mattered to you, I wanted you to know that you have been heard.

 

<3

[Sandra in Chile]

Greetings

 I can not argue that what you are scared abut it not valid. It is. Real life is much more complex than we all thought it would be. We based, at least I did, our assuptions upon TV or movies, and that, as grown ups know, is atypical.  But what is also true is that there is a lot of love and energy out there. So when you get to feeling, like I do on occassion, overwhelmed by it all, give me an e-mail. My Mom died when I was 18 months old, my Dad died last Oct. So i have always thought about death and you can write anything you need to. No rules for feeling the way you do. Today my sad thoughts are that I live out of the USA and wished I had not moved so far. So I can be your pen pal. I live in La Serena, Chile. In the meantime, take care, know others are out here slogging throught the same sorts of issues. I get where you are coming from. Sandra, who really does live in Chile

[Emmet]

I was reading the blog of a loved one describing the degeneration and death of her brother from this disorder. After a slow inexorable decline to being bedridden, blind, and aphasic with severe cramps from the contractures and multiple UTI's from his Foley catheter (Medicaid would onlypay for one a month; it'd adhere to his urethra requiring it to be torn away to be replaced, like repeatedly passing kidney stones the size of golf balls), his bowel finally became paralyzed and peristalsis ceased. He began regurgitating and aspirating feces. Yeah; at the end, he drowned in his own ****.
There's absolutely no way that I'm going to passively sit back and suffer this disease to complete it's inevitable course. Before I loose the mobility and dexterity to do so, I will take myself out first.

[Heartlight]

Hi again, Emmet.

 

There is a great deal of discussion in Canada about doctor assisted suicide.  A great deal of debate, actually.  Some doctors and people are for it and some are against.  A large percentage, whether for it or against, understand that it will, eventually, be made legal.

 

Death happens to us all and, in my humble opinion, it is time that we, as a society, start to change our fear, start to change our support systems, start to more fully allow the integration of this process into our society.

 

And I do think that it is starting.  I am happy that Canada is having this discussion.  I agree that if I were in your shoes, I would hate, dearly, to create that much pain for my loved ones.

 

I know I keep saying it but I think it is that important to talk about this with your mate.  If this is your decision, create an honouring of your life together and make a decision and maybe even determine a ritual that makes it into an honouring of your relationship instead of an escape.

 

I can't even imagine the difficulty and even fear for the inevitable and I am very afraid of the end of my own life so I can't image what you are going through even coming to this decision yourself, but I understand your choice.  And if a loved one of mine wanted to make this choice, I would want to be there to support them, no matter how hard it was for me.  And if I wanted to make this choice I would want my loved ones to be there, no matter how hard it was for them, so that we could all know the importance of what we just experienced together.

 

Let your love guide you, Emmet.

 

<3