Disconnected

May 20, 2012 at 12:35 PM (Uncategorized)

It’s quite different from last year. I seem to have mildly miffed some folks here…no one’s being mean, it’s just that I’m not ‘in on things’ anymore, and that was good for my head. I don’t mean to offend. There hasn’t even been a conversation. I get the feeling that over the winter somehow I got mistrusted, but I barely *saw* my neighbors over the winter.

I have limited opportunity for offline interaction (though more than I did in Denver) and so when that avenue ‘dries up,’ I get sad.

I’m also hypersensitive about it since I’m dealing with depression….It irks me that the depression has come up in the middle of spring/beginning of summer. How stupid. Been shuffling around in my head for a ‘triggering event.’ can’t find any.

Could be the complete lack of money caused by a hundred dollar a month rise in my Medicaid spenddown….

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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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Running around my internet space, drumming my feet on the floor, and pulling the hair out

May 11, 2012 at 6:23 AM (Uncategorized) (, , , , , )

of my head.

Because while this post shares some truly laudable ideas…

It is, at the same time, (the New Ager portion of my family may never forgive me for this one)

An incredibly large stack of misguided muddledom.

First, let us give credit where credit is due.

I love this picture :

Post image for Dear LOA: Why Are Some People Born Disabled?

First of all, we have to dispel the idea that being “disabled” is somehow a “bad” thing. We assume that it is, but we can never actually know what someone else’s experience is really like. When you look at a disabled person and judge their experience to be somehow “less” than yours, you’re actually doing them a disservice. Why do we assume that a life without hearing or sight or the use of one’s legs is worse than one with these supposed “shortcomings”? It is different. But different is not the same as worse.

They seem to have come up with a primer version of the Social Model of Disability, that it’s not the condition, but societal barriers that ultimately hinder those with bodily difference, all on their own (virtually pats LOA blog on the head.)

We can have fun, fine, productive lives with the right supports and a supportive circle of friends/family (my def of productive is a bit broader than the work for money version)

But here’s where they begin to fall down the rabbit hole.

When a baby is born “disabled”, it’s generally due to a pre-birth intention, instead of the result of resistance. It’s important to understand that nothing has gone wrong. This baby is not being punished for anything and neither are the parents.

If a child is born with a disability, I agree and have stated that the blame game (blame it on the parents) is non productive and wrong in most cases.  But to tell parents that their child chose such a thing, might leave them thinking they have less responsibility to nurture, help and direct that child in the path of the best supports for them.  Or encourage the worst of them to abandon that child, because after all it was the child’s intention to become disabled.

Madame Marshmallow Prophet, babies do not have the capacity to choose such things. I’m aware that science makes you run for the granola, but sentience must exist to create intention, and it takes a while for babies to get there. The brain doesn’t boot up until weeks into a pregnancy, and it doesn’t have the capacity to decide on body setup, even out of the womb.

Some “disabled” people have a very hard life. They are bitter and unhappy and fully believe that if they didn’t have this disability, their life would be much better. Some people who have no visible disabilities feel exactly the same way. They are bitter and unhappy and believe that if their life was simply different in some way (born to different parents, win the lottery), their experience would be much better.

A large percentage of the unhappiness of some PWD’s comes from others attitudes about them, and external barriers…It’s not necessarily the condition itself that makes things difficult on a day to day basis, but the way the outside world handles it.

Some disabled people are perfectly happy. They enjoy every minute of their lives. They’re happy shiny puppies. Some non-disabled people have achieved this high vibrational state, as well.

First, I’d like to say that if one sees a shiny puppy, it’s a pretty good bet that a puppy bath will soon be in order. Second, no one, impaired or not enjoys every minute of their lives. That is an impossibility.

And while I’ll completely commit to and admit to being as one ex friend put it “A bitter, judgemental b!tch” sometimes, that’s my right as a human being. It sometimes has to do with my impairments, but not always. I firmly believe if I were able bodied I’d have plenty of BJB moments because well, that’s just how I roll.

Yes, as the impairments have piled on I have more crying towels handy. I try to handle it by (old method) bitching and (new method) working out.

This person’s belief system is clearly a linear descendant of Bernie Siegel, the guy who figures if you got cancer, then well, some how you unconsciously wanted it.

Here’s proof:

“Disabilities” later in life are manifestations of resistance

When an adult has an accident or illness and is left without the use of part of their physical body, this new limitation represents a manifestation of resistance. It’s no different than if someone manifests cancer or pneumonia. The experience they are having will be a match to some belief they are carrying. The disability manifested both as a result of the resistance and as a way to overcome it. For example, someone may feel trapped in their job. They feel like they can’t move, can’t breathe, can’t get out from under the enormous stress. They ignore the negative emotions and keep on triggering this belief, until one day, they manifest an accident, leaving them without the use of their legs. Now, they are literally trapped in a way, their ability to move has been impaired. The experience (trapped in a wheelchair) matches the vibration (trapped in a job).

But, while this experience is evidence of the underlying belief, it’s also an opportunity to release it. If this person finds a way to feel free, even while in the wheelchair, he will feel free in the other areas of his life, as well. And then, it’s entirely possible that he’ll manifest a way to regain the use of his legs. [Note: Brain damage essentially works the same way, but is much more extreme. It involves a partial to complete withdrawal from reality, often the result of SEVERE resistance.]

As a cancer survivor, Madame Marshmallow Prophet, I can tell you I never asked for that, nor would I wish it on my worst enemy. I embrace the cool people I met while under treatment, and the life lessons learned from it, but in no way does that mean that some subconscious, woo-woo scary part of me walked up to the menu board and ordered Hodgkins with a (very late) side order of lymphedema. Or that, as a baby, I chose Cerebral Palsy, or that as an adult I went looking for asthma, carpal tunnel, or chose (are you KIDDING me?!!!!!!!) depression.

I recognize that in some weird way, you think you’re helping. You aren’t.
This is just as bad, in its way as the medieval notion that disability is the result of sin.

Disability is neither a choice, an intention (except in those rare cases when an adult decides to injure themselves) or a sin. Impairments can arise from spontaneous mutation, genetics, accident, injury, or other as yet random, unknown reasons. Putting it out there that that isn’t so borders on the irresponsible. It impedes any adult wrestling with the medical and social implications of a newly arrived impairment from arriving at the balanced, fact filled way of moving forward in a good life while also being a person with disabilities.

Bleah. Knowing this load of **** is out there can really ruin your morning.

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Some days, I’m just a troglodyte…

May 9, 2012 at 5:27 PM (Uncategorized) (, , , )

A caveperson refusing to embrace the grownup idea of what’s a good thing, and instead pout because it came along too late for me.

My grown side is really excited about what cord blood might mean for children with cerebral palsy….the potential for building or rebuilding some of the less than optimal parts of the way we talk to our muscles.

But then I just get irritated.  I’m such a mental two year old sometimes.

“Could’ve helped me.  Why didn’t you bright lights of medical marvels come up with this years back?”  It has resonances of when the first HIV cocktail medicines became available two years too late for my spouse.

It’s why the old “cure” paradigm is so useless for a fulfilling life.  You don’t sit by the phone and pine for this stuff, especially when you’re way past twenty one.

If it shows up it shows up, use it then and be pleased about it.  And if it doesn’t, or it shows up late…you deal with what you’ve got.

Whaaaah.  Bitch complain.   But then I just shrug and say to myself…”Well, I’m doing rehab….I’m seeing some small improvements.  I’m doing what I can do.

I think, in this case it’s part of the broader irritation with having turned fifty this past year…

more and more things just aren’t going to happen.

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Imagine, for a moment

May 8, 2012 at 7:50 AM (Uncategorized) (, , )

That I am Caesar.  Or Pontius Pilate.  (or Cleopatra, for those uncomfortable with different gender hypotheses)

My thumbs would break, I’d have to point them down so fast.

after seeing this complete loon

say out loud that all our troubles started when women got the vote

Come in HERE and say that!

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