Carolyn Spiro Silvestri MD was my twin sister…how I miss her!

The night before my sister, my identical twin sister died, I had an extremely vivid dream about her, rare for its vividness as much as for the fact that I do not remember when I last dreamed about her.

The dream was as follows: I was in a mute state and unable apparently to function as the world would have wanted me to, and I remember Lynnie was there, but not talking to me but to some functionary who wanted her to sign some papers for me essentially taking over my care and becoming in charge of my life. The word dementia was thrown about, and I remember thinking that even if I screamed I could not get it across to her or to anyone that I was NOT in the midst of dementia, but simply caught in some state that made it impossible for me to communicate with them. Much happened that struck me even then as unnecessary because I knew I was conscious but simply did not know how to bridge the gulf to Lynnie and the other person that I was still in there…some time later, I discovered that soya products had been missing from my diet and that once these elements of plant bas3d life were replaced I would be able to come out of my state of apparent suspended animation and live again. Instead, it seemed that no one believed me, or could even hear me say, I’m fine, I’m here, I just had a soya deficiency which is now replenished. I don’t need a Lynnie to take charge or be my conservator.

I woke, Not from a sweat drenched nightmare, but nevertheless feeling uneasy and struck by the first two facts, that I had dreamed extremely vividly, remembered the dream, and that Lynnie played a huge role…I did not think too much about this the rest of the day, until Chip called with news that Lynnie had died, suddenly and unexpectedly, that afternoon. Then I remembered the dream, and how strange it was that she had appeared to me so concretely and vividly just the night before. Was she telling me something?

Click on each picture below to see title, if caption missing.

(mostly photos from our childhood. )

 

As seen on a Sussex Directories Inc site

Spiro Twins costumed in dishtowels with cousin Billy Eaton (?)
Damned if I know!
Grandma Carolyn Wagner, baby Allie, Carolyn Spiro and mother, Marian Wagner Spiro

OTC hearing aids and lower prices-soon!

this is the fact sheet that I obtained from senator Elizabeth Warren,s website.

The Over-the-Counter Hearing Aid Act of 2017

Approximately 30 million Americans experience age-related hearing loss, including over half of adults between the ages 70-79.1 Yet only a small share of Americans with hearing loss – around 14 percent – use assistive hearing technologies, primarily because they cannot afford to buy costly hearing aids.2 Hearing aids are not covered by Medicare or most private insurance plans, and out-of-pocket costs for a single hearing aid average $2,400 – far out of reach for many consumers.3 As a result, individuals living in poverty are substantially less likely to have access to hearing aids than those with higher incomes.4

Complex hearing aid regulations exacerbate this problem by restricting the availability of hearing aids. In 1977, the FDA imposed a set of special regulations on hearing aids, including a requirement that individuals obtain a medical evaluation or sign a waiver of that evaluation before being allowed to purchase or use a hearing aid. After an extensive review, the National Academies of Sciences, Engineering, and Medicine found “no evidence that the required medical evaluation or waiver of that evaluation provides any clinically meaningful benefit” and recommended “removing this regulation to serve consumers’ best interests.”5

Both the National Academies and the President’s Council of Advisors on Science and Technology (PCAST) have also recommended making some types of hearing aids available over the counter – similar to the way in which basic reading glasses are available without a prescription. PCAST’s analysis of the hearing aid market concluded that “consumers find it difficult to shop for the best value.”6 Hearing aids are typically sold “bundled” with fees charged for evaluation, follow-up, and adjustments to the device, even though many consumers never use these services.7 Allowing hearing aids to be sold over the counter will expand consumer choice, open the market to innovative hearing technologies, and drive down prices so that millions more Americans can access affordable hearing aids.

The Over-the-Counter Hearing Aid Act of 2017

The Over-the-Counter Hearing Aid Act of 2017 implements recommendations from PCAST and the National Academies to help the millions of Americans affected by hearing impairment. The Act:

• Makes certain types of hearing aids – those intended to be used by adults to compensate for perceived mild to moderate hearing impairment – available over the counter.

• Removes an unnecessary and burdensome requirement that consumers obtain a medical evaluation or sign a waiver of that examination in order to obtain an OTC hearing aid.

• Requires the FDA to issue regulations containing safety and labeling requirements for this new category of OTC hearing aids.

• Maintains existing safety, labeling, and manufacturing protections and applies them to OTC devices in order to ensure that OTC hearing aids are held to the same high standards as other medical devices.

• Requires the FDA to update its draft guidance on Personal Sound Amplification Products (PSAPs), consumer electronics products that may use similar technology to hearing aids, but are intended for use by individuals with normal hearing.

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1 Frank R. Lin, John K. Niparko, and Luigi Ferrucci. 2011. “Hearing Loss Prevalence in the United States,” Archives of Internal Medicine 171: 1851-1853 (online at: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3564588/).
2 National Academies of Sciences, Engineering, and Medicine. 2016. Hearing Health Care for Adults: Priorities for Improving Access and Affordability. Washington, DC: The National Academies Press (online at: http://www.nationalacademies.org/hmd/Reports/2016/Hearing-Health-Care-for-Adults.aspx), p. 183.
3 President’s Council of Advisors on Science and Technology, Aging America and Hearing Loss: Imperative of Improved Hearing Technologies (October 2015) (online at: https://www.whitehouse.gov/sites/default/files/microsites/ostp/PCAST/pcast_hearing_tech_letterreport_final.pdf), p. 1. National Academies of Sciences, Engineering, and Medicine. 2016. Hearing Health Care for Adults: Priorities for Improving Access and Affordability. Washington, DC: The National Academies Press (online at: http://www.nationalacademies.org/hmd/Reports/2016/Hearing-Health-Care-for-Adults.aspx), p. 21-22. Sergei Kochkin. 2007. “MarkeTrak VII: Obstacles to Adult Non-User Adoption of Hearing Aids,” The Hearing Journal 60: 24-50 (online at: http://www.betterhearing.org/sites/default/files/hearingpedia- resources/MarkeTrak%20VII%20Obstacles%20to%20adult%20non- user%20adoption%20of%20hearing%20aids.pdf). Karl E. Strom. 2014. “HR 2013 Hearing Aid Dispenser Survey: Dispensing in the Age of Internet and Big Box Retailers,” The Hearing Review 21 (4): 22-28 (online at: http://www.hearingreview.com/2014/04/hr-2013-hearing-aid-dispenser-survey-dispensing-age-internet-big-box- retailers-comparison-present-past-key-business-indicators-dispensing-offices/).
4 Kathleen E. Bainbridge and Virginia Ramachandran. 2014. “Hearing Aid Use among Older United States Adults: The National Health and Nutrition Examination Survey, 2005-2006 and 2009-2010,” Ear and Hearing 35: 289-294. 5 National Academies of Sciences, Engineering, and Medicine. 2016. Hearing Health Care for Adults: Priorities for Improving Access and Affordability. Washington, DC: The National Academies Press (online at: http://www.nationalacademies.org/hmd/Reports/2016/Hearing-Health-Care-for-Adults.aspx), p. 120-121.
6 President’s Council of Advisors on Science and Technology, Aging America and Hearing Loss: Imperative of Improved Hearing Technologies (October 2015) (online at: https://www.whitehouse.gov/sites/default/files/microsites/ostp/PCAST/pcast_hearing_tech_letterreport_final.pdf), p. 3.
7 Karl E. Strom. 2014. “HR 2013 Hearing Aid Dispenser Survey: Dispensing in the Age of Internet and Big Box Retailers,” The Hearing Review 21 (4): 22-28 (online at: http://www.hearingreview.com/2014/04/hr-2013-hearing- aid-dispenser-survey-dispensing-age-internet-big-box-retailers-comparison-present-past-key-business-indicators- dispensing-offices/). National Academies of Sciences, Engineering, and Medicine. 2016. Hearing Health Care for Adults: Priorities for Improving Access and Affordability. Washington, DC: The National Academies Press (online at: http://www.nationalacademies.org/hmd/Reports/2016/Hearing-Health-Care-for-Adults.aspx), p. 242-243, 258- 259. Consumer Reports, “How to Buy a Hearing Aid” (July 2009) (online at: http://www.consumerreports.org/cro/magazine-archive/july-2009/health/hearing-aids/how-to-buy-a-hearing- aid/hearing-aids-how-to-buy-a-hearing-aid.htm).

 

Award-Winning Short Story — 1 page — and art

THE DRESS

by Phoebe Sparrow Wagner (formerly Pamela Spiro Wagner)

I will never forget The Dress. Worn only once, with three quarter-length sleeves cuffed in white, and a demure white collar, it had two layers of navy blue crepe skirting, with a dropped waist and a sash. This was the first “dressy” dress I ever picked out all on my own.
The first thing about The Dress was that it was not the pale pink tent that I had worn to my first mixer with Sheffield Academy, which I was convinced scared away my freckled red-haired date, not that I minded much, once I saw him dance. The second thing about The Dress was the look in the eyes of the boy at the Gunnery, where my second mixer was held. This boy was matched with me strictly by height. I don’t know why, but something clicked with us, and the first thing he said to me, to my huge relief, was, “I hate dancing, don’t you? Let’s take a walk.” With that, we linked arms and spent the evening strolling arm in arm around his campus.

To say that nothing happened would seem almost hilarious these days, except that nothing did, besides our shared and passionate discussion of Plato and the books we’d read and other schoolish stuff. By the time the bells rang to call everyone back to the buses, I knew, because after all, I was a teenage girl who had read books, what might happen. I also knew, because I was an avid fan of the advice columnist Ann Landers, that no self-respecting young girl allowed a kiss on her first date. We had been walking arms around each other’s waist all evening; I liked him, it was equally clear that he liked me. It was inevitable what would happen next. But I was a good girl. What to do?

I tried to say good-bye, smiling sadly and keeping the distance that would protect me. My adoring young man nevertheless leaned in to kiss me. Turning my cheek, I rebuffed him. I did not mean to hurt his feelings, but I knew that Ann Landers was watching me and would be happy my virginity was safe. As I climbed onto the bus with a heavy heart, I looked back and waved but my date was nowhere to be seen. I took my seat, feelings mixed about whether the rebuff had truly been a success.

Then someone behind me spoke. “Good for you, Pammy, not kissing the black boy!”

What? I looked at her. My classmate was smiling grimly. “You didn’t kiss that -–“ and she used the terrible word I had never heard anyone say to my face.

In that moment, I knew that if I could have, I would have raced off the bus and grabbed that young man and kissed him full on the lips, and to hell with Ann Landers and her crappy advice.

But it was too late to change anything. Too late to let him know why I had not kissed him, too late to kiss him in spite of my classmates and too late to spite Ann Landers and my proper upbringing. Too late, too late, too late. I never wore that dress again.

—————————-

This short account, all too true, won first place at Vermont’s Counterpoint’s annual writing contest in 2015. You can see it and the other first place winner at

https://www.vermontpsychiatricsurvivors.org/wp-content/uploads/2012/10/Counterpoint_Summer_2015.pdf

Below is my very first painting done in about 2009 or 2010 when I was first starting to do art. I called it First Love, and now you know why.

First painting ever

“Twin Realities”: schizophrenia article from 2003

Pam and Lynn Spiro, in England, 1962

 

 

 

 

 

Kathleen Megan’s story from 2003, while DIVIDED MINDS was being written.

http://schizophrenia.com/stories/twins.htm

 

 

Carolyn  and Pamela, after she put on 60lbs on Zyprexa (olanzapine)

“The thing about twins is they invite comparison. Even though they may look identical, one usually has the edge — a little more confidence, a quicker smile, perhaps a bit more talent.

As babies and little girls, Pam Wagner and Carolyn Spiro were like that. They danced and acted and held promise that delighted their parents. They loved it when people mixed them up. They were a tight club of two.

And then in adolescence, Pam, the one with the edge, lost touch with her own mind. Life became confusing and the twins’s lives took separate paths, diverging and then intersecting repeatedly, as they once again do now. Pam is a poet and Carolyn a psychiatrist. In midlife, they’ve come together to write a book, to try to capture their story for the benefit of others, and also for themselves.

Their story is a tale of the inseparable bond of sisters, of twins, and their struggle when their lives became anything but identical.

• • •

When you enter Pam’s apartment you can’t escape the photo test: two adorable baby girls, ribbons in downy hair, one gazing intently, the other head-tilted, tentative. Both bright-eyed, identical. Which is which? Which is Pammy and which is her twin, Lynnie?

You can’t tell. Is that thoughtful tilt a Lynnie trait? The more focused expression Pammy’s? Impossible to say, so you guess and you guess wrong.

And you wonder, was the die already cast at so young an age? Were they already – though indistinguishable on the outside – so very divergent on the inside? The seed of illness, perhaps, already planted; the roles of caretaker and cared-for so early ordained. You try to reconcile these photos – these identical babies and later, mirror-image school girls – with all you see a half-century later.

So very different are they now. How do they live with this, the undoing of their twinhood? And, how has their family, so accomplished and talented, coped with the slap of fate? That one became psychotic, the other a psychiatrist. Pam catches you staring at the beguiling babies. “You know,” she says, “I was well once.”’

click on link above to find rest of story, written after a years long series of interviews, both at home and in hospitals.

 

The DEEPER DIG at Vermont Digger — on Mental Health Care challenges

Features me and a poem…as well as a discussion of mental health “care” with DMH commissioner, Mourning Fox

https://vtdigger.org/2018/11/16/deeper-dig-hospitals-struggle-psychiatric-care/

 

BRATTLEBORO RETREAT — how they torture and abuse patients

Brattleboro Retreat Aftercare Summary

Please read both documents, noting how the first is measured and reasonable written by an impartial social worker, and how the second written By thd doctor who made no bones about how he hated my guts and tries to see BPD in everything, even my socializing and doing art! Jesus flicking christ!

 

 

T

WHAT REALLY HAPPENED AT VPCH, and the lies they told…Part 3

If you do not know exactly what happened, please read parts 1 and 2 previous to this post.

I will now post the Nursing Board result of the investigation, complete with the two nurses now in agreement and colluding to maintain that I attempted to stab them! NOTHING of this is in the chart or the accounts from any previous investigation, and I have the papers to prove it. But suddenly they grew new memories of what happened? Bullshit,. they lied to save their jobs, and it is clear that they got together to agree on a story, since it never even came close to happening as their now consistent with each other lies maintain.

But review the records and tell me what YOU see….Because to me it is OBVIOUS that they got away with abuse and soul murder.

you can contact me  via the contact page. I have NOTHING to hide.

LIES!!!!

"While I breathe, I hope"

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The Drawing of the Words

Strange Anatomy, Awkward Perspectives and I, Haiku Books For You

SUCCESS INSPIRERS' WORLD

ACHIEVERS AND INSPIRERS

Ger's Camino Blog - Camino de Santiago

Making sense of my Camino Francés

Abuse with an Excuse

Punishment is just Abuse with an Excuse

Mammonelle

It seemed like a good idea at the time officer...

YennPurkis

Thoughts on all things Autism and mental health

Gourmet Paper Mache

Not your third grade paper mache

irevuo

art. popular since 10,000 BC

Elan Mudrow

Smidgens

Kingbird Graphica

All content copyright (c) 2017-2018 by the author.

Amdall Gallery

Artwork, data analysis, and other projects by Jon

Art Every Day 365

My Life is Art, My Art is Life

Thoughts and Observations of a Certified Nut!

“In India when we meet and part we Often say, ‘Namaste’, which means: I honor the place in you where the entire universe resides; I honor the place in you of love, of light, of truth, of peace. I honor the place within you where if you are in that place in you and I am in that place in me, there is only one of us." ~~Ram Dass~~

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