Before breathing isn’t better…

May 19, 2012 at 7:31 AM (Uncategorized) (, , , , , , , )

If you have a vulnerable person in your life…listen to them when you can…and if they feel hopeless, you’d better be digging for some rather than buying into that yourself…

Here’s what it’s about.

I hope he’ll forgive me…but I feel the  need to expand on this excellent blog post of Steven Drake’s at Not Dead Yet, highlighting an article on the Duty to Die crowd’s decision to assist someone in Minnesota in ending their life in 2007.

I’ve not been to an ADAPT event, but I always watch what they do with great interest.  For those of us who have issues that keep us homebound much more often, even than others with disabilities…ADAPT stands in, for any of us who cannot leave where we live, whether it’s in an institution, or a medical issue that keeps us inside.  An ADAPT activist speaks directly to the danger of assisted suicide to people with disabilities.

Gordie Haug hits the key points:

“‘I oppose any policies and practices that threaten the lives of persons with disabilities,” Haug said, adding that he works with many disabled people suffering from depression.’

Haug said there are treatments and options to ease pain and effectively treat depression, but with Medicaid cuts and tight budgets, Haug worried people may decide it is cheaper to take a life than to preserve one.”

It’s so important for ADAPT, and more broadly PWD’s to have a voice in this, and to put the arguments out there in a secular framework…because those who fear extreme religion, who otherwise might be our allies in this…would be turned off by the religious arguments against suicide, would see our very real three dimensional present concerns about this as diluted if couched in religious terms. And I say this as a person of faith, whose faith plays a large role in my day to day. I live in a country, not in a church, and if I want my country to protect my right to continue to breathe I must speak to power in the language of the country, not the sanctuary.

First:

The absolute need for a support system, people checking in on the person with disabilities becomes clear, because: When someone is driven to decide to want to end their own life, it is vital that an outside eye be there to ask the critical questions:

“Do you feel (or have you actually been told by a medical pro) that there is no medicine, no treatment available to ameliorate your physical pain?

“Do you also feel that there is no help, theraputic or medical,for the emotional downturn you’re in?”

Because the answer to these questions is often, yes, they believe that, but: those are their feelings, their perceptions. Factually,
*there may be help available* that they can’t see because of their depression…help for both should be clearly listed, available and a path to access to treatment searched for…by family and friends, if there is no professional support such as a social worker knowledgeable about options.

And, most of these “Final Exit” people are able-bodied…are they not?

I don’t pretend to speak to the unspeakable, the patient who has had an infection migrate to the part of the brain that can turn a pain signal off and deactivate it, or, patients who in the midst of ostensibly good medical care scream in pain for three days straight and morphine, etc are completely ineffective.

I’m speaking for those persons with terminal or debilitating chronic conditions with incredibly severe pain, for whom there *is* an answer, and for whom that answer is never presented.

I think Final Exit people once saw someone in severe, terrible pain, and fell into the default able bodied argument. “I could never live with/like that.”
Yes, but that’s *their* belief. *their* idea…from a perspective, perhaps of never having been through it…
They themselves aren’t in pain yet. How in the **** do they know how they would react, and why do they think imposing their perception on a vulnerable person is compassionate?

Second:

We cost money. HUD, (housing), Social Security, Medicare, Medicaid.
We commit the cardinal sin of costing the country money merely by existing. I’m committing that particular sin right now. I’ll admit it troubles me. I have a great deal of internalized shame that I’m unable to work. If any Duty to Die advocate, medical professional, hospital bean counter…lets the motivation to save money be *any part* of the mix of deciding to help someone end their own life…

That devalues any lives but the most productive and healthy right on down to disposable…their inherent addition to the planet just by being here dismissed.

it is my belief that assisted suicide should never have become law.
never been enshrined by lawmakers with force and precedent…as it did in Oregon. Because the dangers of seeing us through a balance sheet or not seeing the help for physical and mental causes of the wish to end one’s own life are out there right now, and they have more power because there is a law somewhere that allows it.

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A quarter century ago…

August 21, 2010 at 1:02 PM (Autobiography, Disability) (, , , , , )

This was happening to me.  And this is what I think about it, with perspective.

It proves so many things.  That a fully fleshed out romantic relationship *is* possible for people with disabilities.

Again, that we’re people first.

That, some of the time, we hold down jobs, run a household, get married, hold off the inlaws…similar in many respects to the able bodied world…but our coping skills and abilities are profoundly different than the able’s.

And sometimes we don’t fcucking cope at all, and the able’s judgement of who we are can just go hang.

And the seemingly contradictory paradox, based on the whole relationship:

That I would never, ever want to go through the insanely rough times that followed after this again, and wouldn’t wish similar cirumstances on my worst enemy. And, frankly would avoid dating anybody, even that mythological perfect man, that was likely to have a long, slow medical nightmare of a downfall. Doesn’t mean I wouldn’t hang in there.  Doesn’t mean all persons with disabilities are out of the running. Just that if the likelihood of a long slow downturn in a younger person exists, I’m bloody well not going to throw myself in front of that bullet.

This last sounds almost like a betrayal of others with chronic severe illness.  (Separate from disability) I can’t help that.

Also sounds like hypocrisy in a way because I am a cancer survivor, which unfortunately *does* make it more likely to recur than  someone who has never had cancer getting it in the first place…

Can’t help that either.  Those are my emotional/investiture boundaries now, and I’m sticking to them.

At the same time, with time passing, I wouldn’t have missed a moment of the good stuff, and the bad stuff did teach me some serious life lessons about sacrifice, and duty…and no, not just my own sacrifices…He took a long long road, and eventually learned and practiced adult sacrifice as well,   before he himself was sacrificed.

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I don’t [want to ] know Jack

April 16, 2010 at 7:16 PM (Uncategorized) (, , , , , , )

Regarding Jack Kevorkian, and the pending HBO movie.

If I revise my present dnr to state that sometimes withdrawal of nutrition and hydration is fine by me…(which I doubt I’ll do)…I’ll hope that good palliative care and hospice or other  will be in attendance.  Three guys will have to say “Look no thinking process at all….”

I applaud some of his facebook fans for saying they have a right to decide what to do with their own bodies.

I would take it further.

Everyone has a right to decide on this issue.  They also have a right not to be coerced into one decision or another by medical persons,  predatory or misguided ‘friends’ or family members, or by a credentialed physician with homemade tools that he has to use in a van.

Pacino as Kevorkian says he’s doing this “to make a point.*

I believe it was either Steven Drake or Diane Coleman of NDY that wondered ‘aloud’ in print, why the suicidal wishes of able people are seen as clearly irrational, causing crisis lines, law enforcement, shrinks etc to leap into action…

(Get them off the ledge!  Don’t let them jump?  They’ve overdosed! Stomach pump! ETC)

But when a person with an impairment/illness or disability expresses these things…it’s seen as rational.

The pressure, subtle and slow, perhaps motivated by a genuine desire to ease suffering…begins in earnest.

I hope, even for those on the opposite side, those who see Kevorkian as some great hero, would take care to ask the person who had asked for death due to extreme physical suffering…this simple question:

“If your physical pain could be managed for a little while or a longer time…If you woke up with the same illness but a great decrease in the pain caused by that condition…would you decline days weeks months more , and choose to die now?”

Are you saying that you want to die,  literally, or are you unconsciously saying that, when what you are really crying out for is relief from pain?

Those are the corollary questions that anyone involved in end of life decisions *have* to ask the patient or patient’s rep before I’d feel safe.  Before I’d be quite clear that this is the true wish of any individual patient.

and, either way the patient chooses…their wishes should be respected by the doctors and nurses and/or hospice folk charged with their care.

Have the discussion.  So it’s your wish that is respected…not a beneficiary, not a relation, not a friend, not someone offering their aid…to make a point.

And, last but not least.  read this

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Broken cipher

June 16, 2008 at 4:46 PM (Uncategorized) (, , , , , , , , , , )

When did I turn left,

That corner, bend, crosstreet that means ‘liberal’

I was bent that way quick and painful…but I would have gotten there by the scenic route anyhow.

The family, you see. They’ve been wondering. When did I become a member of the ‘Democrat Party’ (cue shudder for wrong spelling)

I never was ‘on the right.’ Just wanted to be apolitical, research from the primary sources,case by case…

It began in March of ’89 when I was advised my beloveds clock was ticking…

Or, did it begin in 1987 when our first friend Ray died?

Or, was it 1982, before he returned to my life, when I knew nothing, and he was given Hobson’s choice, take the factorate, sign the waiver and you’ll-never-be-able-to-sue-but-you-will-be-able-to-be-treated-for-your-existing-life-threatening-condition?

Or, was it 1981 again, before me and after me, when he actually believed with Falwell on the projection screen that it was gods-vengeance-against-the-gays…

It began for me in 1987, when I began to form my own opinion about the conflicting medical data and four allegedly private, allegedly medical providers,who had allegedly used unsafe places to get medicine and allegedly unsafe practices in preparing it.

Or, completely separately my own cancer, having nothing to do with him, when I was first told I was in immediate danger of death, and then the story changed…I’d have to wait three weeks have someone actually start holding off death, to go to another hospital. God obliged, I suppose, because I lasted those three weeks.

Or a brief bit of political hilarity in 1992 when my mother in law was scandalized by the husband’s “Jessie Jackson– Jobs Peace Justice” t-shirt. He wore it to mow her lawn and drink a well deserved beer in her kitchen….he’d made quite a journey from Falwell to Jackson, and voted for Clinton…the guy who lied and then, nobody died. And then Jesse Helms sent him correspondence that informed my husband that his ticket was punched for hell. And made my husband cry.

(I think the husband wouda been a Hilary person, today…maybe Obama, maybe not.)

Was it In 1996 when I read that: Allegedly in June 1982 Six*months*after*they*were*allegedly told by the *alleged* govenment watchdog agency that they must retool, relearn the process to avoid *alleged* contamination of the *alleged medicine. that had previously not been the alleged instrument of his death, but the thing that kept him alive…

Why would anyone think I could trust a corporation after that? About anything?

Don’t trust them when they give you products and don’t trust them when you work for them.

Just don’t.

Or in 1998 when my life and Trent Lott’s intersected briefly.

He was holding up some small sliver of justice regarding my spouse’s demise and I sent him an email:

“Shame on you, Senator.”

It was, in fact my first ‘political dissent’

And then 9/11 forced us all to look at the whole world, not just our own personal little mistrusts.

2002. They make stuff up, and we start a second war. Money, disability,civilians women children soldiers….wrong war wrong place….And always my grim pragmatism outside of any moral outrage, “Who, for f***’s sake said we had *money* to give away to wage war like this?” I certainly didn’t.

Afghanistan I might have agreed with a blank check for in the beginning. (Yes, I’m the sort of bleeding heart liberal that wants Osama’s head on a pike in Times Square. I’m all soft and squishy like that.)

Not Iraq.

And even for Afghanistan: Torture? I never agreed to that.  If we torture, then *they will too.* I don’t want the torturing of US soldiers on my conscience thanks.  Gitmo? Well *that* worked out well, didn’t it.

Throwing CIA people under the bus to make political points. Ditching the Geneva Convention. More wiretapping of all of us here, so they don’t have to do it over there…Didn’t agree to that either.

The legal concept of Posse Comitatus stripped away, and not yet restored. (Habeas Corpus is on it’s way back, though. ) The politicization of the Departments of Education, Vocational Rehabilitation and Justice.

And then 2005. I admitted I was impaired and read a flood of blogs about neglect, abuse, abandonment, invisibility,disrespect…and began wishing that the Democrats would not just work for us, but know about us too.

And Katrina showed just how much this great country could do for it’s poor and/or minority and/or impaired people if they were trapped with no way out

Why would I trust that govermnent. About anything?

And (deep breath) That, family of mine, is why I am a Democrat.

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Campain

April 6, 2008 at 7:50 AM (Uncategorized) (, , , , , , )

Here, someone tells us that patients with an illness condition or impairment, shouldn’t bring their informed stories to the campaign trail…

just hope that it [cancer] doesn’t become a common occurrence on the campaign trail. The cancer conversation is best left to the experts, researchers, and doctors

Just for the record: This guy works for the candidate that wants to exclude anybody with a preexisting condition from his healthcare plan…..

(update) Countdown had Elizabeth Edwards on tonight to discuss this….She supports Clinton’s plan over Obama’s and details that preexisting conditions would be not be covered under McCain’s Plan

People *with* conditions/ilnesses/impairments: ….Are People! People with rights. People who vote.

When I was a person newly diagnosed with cancer, the person who made me decide to seek treatment and live…was a survivor! A woman on the other end of a phone call from the American Cancer Society who explained what my options might be, the downsides and upsides of treatment…and who laughed a lot.

John McCain gets to speak about cancer. He’s had it.
Elizabeth Edwards gets to speak about cancer. She has it.

Mr Malek, *also* gets to speak about it, he’s involved in research.

But no one gets to dictate what patients can and can’t speak about.

If people with ilnesses or impairments (they are different) don’t speak about their experience during an election year:

Lives won’t improve
Lives won’t be saved.

And policy makers in a position to improve quality of life or even life expectancy won’t get eletcted.

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