There’s No Cure for Gretchen Lowe: I Could Be Taken From You

There's No Cure for Gretchen Lowe
Gretchen Lowe, age 35 at the 90’s midpoint, was not dying, as she was at pains to point out more frequently than she would have wished. She had muscular dystrophy, a distinction often lost on those who equated strength with muscle mass, consciousness with cognition, and worth with productivity. A growing chorus assumed this would be her preference, death before disability, rather than the indignity of grappling with that terminal condition from which the chorus-members, themselves imperfect, suffered: life that is both enviable and bleak, and always, always unfair in distribution of the same.
Like so many of her friends, Gretchen had swapped one coast for the other after college and she left DC, a city of increasingly impossible winters, lawyers, and three years of an uninteresting technical proofreader job, and moved to San Francisco, a city of manageable weather, bike messengers instead of lawyers, and apparently no editorial jobs. Five years in, she was the administrative director of a small free clinic for women and had cycled through four shared flats before the Recluse, her boyfriend, gave up his Pacific Heights studio and moved in, more or less, to Gretchen’s two-bedroom flat on a quiet street in Cole Valley.
Like ancient Rome, San Francisco was a city of hills and, with few exceptions, honored its dead by housing them firmly and in perpetuity outside its official boundaries. Gretchen lived and worked firmly within those boundaries, mostly because taking public transportation to and from work everyday took what limited energy she had. She did have an increasingly hard time breathing and walking, her grip was undeniably poor, her fingers lacking in dexterity, but she had an even harder time imagining herself dead, or wanting to be dead.
But she had no master plan, no Disability for Dummies to be her guide, just a lifetime of experience in a body that was weak, breathless, and clumsy, and getting more so year by year. So Gretchen did what was practical and what made life – her life, none other’s – worth living. She kept to the flatter parts of town, used the bathroom before she left home and work, and thought more about her next meal than eternity. In this last concern she had the unwavering support of her family; Gretchen did know how to find a decent restaurant.
She needed this particular skill on this particular evening because her mother, Alice, had flown in. Festive feelings aside, Gretchen had serious misgivings to broach, misgivings that were about a clinical research opportunity that divided them called “Genetic Reparative Therapy.”
When Alice had first excitedly called her daughter months before about GRT, Gretchen couldn’t bring herself to say a hard, “No.” She herself didn’t know exactly why she was flat-out rejecting this “cure” — or why she couldn’t tell Alice no. She’d certainly done it before.
It wasn’t until she burst into tears after half-watching an old Sally Field movie about a mother not leaving her daughter that the feelings coalesced within her as a single as-yet-unspoken fear: “I could be taken from you and you would never get me back.”
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#WSPD2018: Suicide Is a Problem, Not a Solution for Living With a Disability. Yup, Even One That’s Neuromuscular, Progressive, and Degenerative

2018 UPDATE: STILL ALIVE

STILL OPPOSED TO EUPHEMIZING DISABLED PEOPLE BY NORMALIZING OUR SUICIDES THROUGH LANGUAGE

I’m still disabled, still degenerating, and still filled with joie de crip, but even if I weren’t, I still wouldn’t be buying the double-speak that calls my suicide “a rational choice,” “death with dignity,” and “ending my life on my own terms,” while a (seemingly) nondisabled person’s suicide is “a public health problem.”

The terms we use in talking about an issue set the terms of the debate. Suicide is a public health problem. Distorting that through sophistry marketing language feeds suicide contagion.


September 10 is World Suicide Prevention Day. But for a disabled person like me, it’s just not my day. Literally.

Increasingly:

What would be a “threat of self-harm” for you, is a “personal choice” for me.

What calls for an intervention for you, calls for a pre-suicide party for me.

Your movie is It’s a Wonderful Life. My movie is It’s a Wonderful Death.

When it comes to people like me, suicide is rapidly becoming normalized. Or more exactly, suicide is being erased through re-branding. “It’s not ‘suicide’! It’s ‘ending your life on your own terms’!”

But I want a great pre-end of life. I want to live on my own terms.Ingrid posing with her Respironics Bi-Pap S/T

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Dr. Nutone Reveals the Secret of Transcendental Misanthropy

There's No Cure for Gretchen Lowe
“I’ve given a lot of thought to how Transcendental Misanthropy relates to conventional medicine. Of course it has a lot to do with intention. If your doctor prescribes an anti-depressant that gives you side effects that are about as debilitating as your depression, does that make your doctor a practitioner of Transcendental Misanthropy? Has your doctor embraced the essential paradox that pain relieves – increases, paradoxically – pain? The simple use of ‘side effects’ and ‘mild discomfort’ to describe loss of sexual function, insomnia and in the case of weight-loss treatments, bowel control, inspires my respect, I have to tell you.  Language is really something.

“I began to wonder why Max and Emma were considered lesser beings than my colleagues in the department, particularly the older ones and the guy with the hearing aid. I began to resent the condescending questions about my ‘pets.’ One day at a faculty senate meeting, I had my awakening. Max and Emma’s consciousnesses were equal to that of my human colleagues. In some cases superior. They had, after all, achieved for themselves lives we might envy in their ease and comfort. What they lacked was respect from others. What they lacked were their rights.”


“As our Eastern brothers have taught us, though failed to incorporate into a saleable product — although certain towns as Sedona, much of western Colorado, and just about all the Open Access workshop catalog, contradict this failure — attention is critical to our well-being. Or in this case our suffering. Escalation, escalation, escalation — escalating torment until it becomes unbearable is the way.
“You can’t do this without paying a whole lot of attention to what irritates you, what hurts your feelings. How you do it is up to you. I’ve known spiritual seekers in Marin who broke down in tears because their robes weren’t made of the right cotton. Seen fruitarians come to blows with botanists who tell them they’re actually eating vegetables.

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Letters to a Young Fundraiser: The Philanthropeon Wars and the Fall of Telethonika

My Dear Friend:

You wrote of a growing strain on your spirit that seems to have no reasonable source, as your position is unobjectionable, your master provides you accommodations enough, and your annual fundraising goal numbers not unduly burdensome. What then?
You ask if you are perhaps “a loser.” I think not.
During my youth, my father — a fundraising titan who fought for funding alongside Major Donor — became disgusted with my inadequate Girl Scout cookie sales and sent me away to a notorious fundraising academy, one of the very strictest of the Transactional schools.
I was miserable and branded a failure — a loser — at “working the room,” and “friend-raising,” and so on, until I was confined to the barracks for insubordination after I refused to ply my trade at a memorial service, trading donations for signatures in the guest book.
But then I took a History of Fundraising in Western Civilization class. I learned about the Philanthropeon Wars.
I learned about the lost city-state of Telethonika, where disability democracy had been born around the year 504 BC. It is a loss that echoes down through millennia through some fundraisers who have the disability consciousness and who feel the shadow each year as Labor Day approaches. You may be feeling the echo of the fall of Telethonika, that flattish plain located one mountain over from Sparta.

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There’s No Cure for Gretchen Lowe: Dignity Is No Accident(s)

Another Excerpt From There's No Cure for Gretchen Lowe a novelThere was a remarkable lack of public debate in San Francisco — or anywhere else — on Adult Diaper Dispensation (ADD). All costs were loudly underwritten by The Dignity Foundation, a charitable body dedicated to community development, medical research, K-12 education, and, now, small businesses hit by the “squat-by defecation” of serial defecants.

Would you like a TDF annual report? We have one for you right here. It makes no mention of our corporate sibling and sponsor, a disposable paper-goods manufacturer that is aging out of infant goods into a more mature market. Our Dignity Initiative public information campaign takes a broad-based social education approach to bring the public up to speed on what we can do — together — through top-level messaging in high-traffic spaces with framing that deploys innocuous word-play rather that blunt fear.
This top-level messaging was visible to all who cared to look out the car window at the blinking billboard near the off-ramp at Duboce. Dignity Is No Accident(s).
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There’s No Cure for Gretchen Lowe: The List of Lives That Suck

“I’m not really looking to change, Mom.”

“Your life could be easier if you didn’t have muscular dystrophy. What I would have given for this Genetic Reparative Therapy when you were little.”

Gretchen poured water in the coffee maker. “Yeah, I’m well aware that there’s a list out there of Lives That Suck and — of course! — my name is on it.”

Alice continued. “I can’t believe you would even consider not being part of this study.”

“Well, jeez, Mom, I have to consider not doing it.” Gretchen leaned against the counter. The machine hissed and steamed. “Remember when they wanted to fix my foot and didn’t mention they’d be removing half of it? Good thing we pressed for details on that one.”
Silence.
“I have to live with the results of this experiment – I will be the result of this experiment. And I gotta tell you – just because something can be done is not necessarily a good enough reason to do it.”

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My FEDup ™Rant: I Want to Be Envied

FEDUP TM Ideas worth ranting aboutI aim way too low.
I realized this after Congress voted this week to deny me the pleasure of peeing like non-disabled people do, which is to say, without having to do any kind of math, scheduling, or general advance planning when going out to public places.
But by being denied the minimum, I’ve learned to want everything.
You know what would be great? If I could be envied by non-disabled people.
Yes – envy’s bad! I shouldn’t want to be envied. I should want inclusion. Justice. Equality. I should want respect, love, acceptance.
Of course I want all that. But I want more.
I want to be envied by non-disabled people. Not admired. Envied.
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