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Phone responder uses own mental illness to help her callers

Sunday, April 29, 2012 | 9:26 p.m. CDT; updated 11:59 p.m. CDT, Monday, April 30, 2012
Kar­ren Jones answers an­swers the Na­tion­al Al­li­ance on Men­tal Ill­ness Mis­souri phone line in Jef­fer­son City twice a week. She has suffered with four severe men­tal health dis­orders herself but has now found sta­bil­ity in helping others.

Editor's note: This story is part of a semester-long collaboration of nine senior journalism students called Project 573. Now in its second year, the project lets students with different journalism backgrounds (print, photojournalism, radio, television and strategic communication) work together to shed light on a topic that doesn't get much attention.

This year's topic is mental illness in mid-Missouri. People living with mental illness face a harsh reality. Stigma surrounds disorders and diminishing resources make help harder to find. While much of society ignores the problems, dedicated individuals work to fill the gaps.

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An Unsung System tells the stories of these individuals. In upcoming weeks, you will find many of the stories in the Missourian, as well as on KBIA and KOMU. The entire project can be found at www.unsungsystem.project573.com.

JEFFERSON CITY — When they call, they hear her voice. Slow, de­lib­er­ate and warm.

Some call for the first time. Oth­ers call every week. The voice re­mem­bers their names. It re­mem­bers their struggles.

Kar­ren Jones an­swers the Na­tion­al Al­li­ance on Men­tal Ill­ness Mis­souri phone line in Jef­fer­son City twice a week. It’s called the WARM­line, and it’s meant to help encour­age and sup­port those who live with men­tal ill­ness.

Jones al­ways an­swers the same way:

“Good morn­ing. This is NAMI Mis­souri.” She says Mis­souri like Mis­sou-rah.

Some call for in­form­a­tion about a par­tic­u­lar dis­order. She lives with four: post-trau­mat­ic stress dis­order, ma­jor de­pres­sion, schi­zoaf­fect­ive dis­order and dis­so­ci­at­ive iden­tity dis­order.

Some call for help with a prob­lem or to share a re­cent suc­cess. Jones knows what to say — she’s found sta­bil­ity after years of struggle.

Jones has hit rock bot­tom.

She has wor­ried about where to find treat­ment and how to pay for med­ic­a­tion.

She has felt the sting of the stigma. En­countered whis­pers of “There’s the crazy one.” Fought the as­sump­tions that she is dirty, stu­pid and someone to be afraid of be­cause she lives with severe men­tal ill­ness.

She has wondered how to get from Monday to Fri­day, to sur­vive each day.

On a re­cent Wed­nes­day morn­ing, she talks to one of her reg­u­lars, then shares a man­tra she’s em­bod­ied her whole life:

“Keep on keep­ing on.”

The road to re­cov­ery

It’s 1988. One minute Jones is home, the next she finds her­self shop­ping in a mall.

She doesn’t know when or how she got there. She doesn’t re­mem­ber what door she used. She doesn’t re­mem­ber what shops she vis­ited. The past three hours are miss­ing from her mind.

She feels pan­ic and con­fu­sion. Her daugh­ter will be home from school soon and she doesn’t know where her car is.

She wanders the park­ing lot un­til a se­cur­ity guard helps her find it.

Jones struggles through each day with four severe men­tal ill­nesses. She doesn’t have any friends. She’s quit her job as an in­tens­ive care unit nurse be­cause she hal­lu­cin­ates, loses time and suf­fers from de­pres­sion. She is er­rat­ic about tak­ing med­ic­a­tion that is sup­posed to help — she can’t ac­cept that she is sick.

She doesn’t know her way around town. She doesn’t know where her next paycheck is go­ing to come from or how she’ll keep a roof over her kid’s head. She’s scared and she’s alone.

Jones has come a long way from that day in 1988 when she found her­self wan­der­ing a mall by her­self. A long way from the months she was home­less and lived at a Rape and Crisis Ser­vice shel­ter with her daugh­ter. From the years she was un­able to work full time and couldn't find treat­ment that worked for her.

Today, she is a WARM­line re­spon­der, ment­or and speak­er for NAMI Mis­souri, an af­fil­i­ate of a na­tion­al or­gan­iz­a­tion that aims to spread aware­ness about men­tal health, primar­ily through edu­ca­tion­al classes.

But while Jones has tri­umphed within the sys­tem — she has leaned on many gov­ern­ment pro­grams and ad­vocacy groups on her road to re­cov­ery — she’s also tri­umphed in spite of it.

She suc­ceeded be­cause of her own per­son­al strength and a re­lent­less ded­ic­a­tion to seek help when she needs it. She suc­ceeded thanks to in­di­vidu­als who provided a safety net when the sys­tem failed to.

She suc­ceeded in spite of a world that of­ten treats people with broken minds dif­fer­ently than those with broken bod­ies, that is slash­ing budgets and cut­ting re­sources es­sen­tial to those with men­tal ill­ness.

She’s be­come part of a net­work of men­tal health ad­voc­ates who, for bet­ter or worse, take care of their own.

Find­ing sta­bil­ity

Jones began vo­lun­teer­ing at NAMI in 1989 after men­tal ill­ness forced her on dis­ab­il­ity leave from her job as an in­tens­ive care unit nurse. By 1990, she had be­come a paid em­ploy­ee through an em­ploy­ment pro­gram that al­lows people on dis­ab­il­ity to work without los­ing their health-care cov­er­age.

Now, she works two days a week as a vo­lun­teer be­cause she’s old enough to col­lect So­cial Se­cur­ity.

She cred­its work — paid or not — with help­ing her climb out of the worst depths of men­tal ill­ness. When she was first dia­gnosed with a set of men­tal dis­orders in the late 1980s, she said, people liv­ing with men­tal ill­ness re­treated to their homes, drank cof­fee and watched TV.

In­stead, between mul­tiple hos­pit­al­iz­a­tions and a struggle to find the right medications, she began vo­lun­teer­ing at NAMI, which she heard about through a mental health sup­port class.

Sherry Fisc­her, NAMI dir­ect­or of op­er­a­tions, has watched the ups and downs of Jones’ re­cov­ery since she star­ted teach­ing with her five years ago.

She at­trib­utes Jones’ sta­bil­ity to these things: “Kar­ren is the per­fect ex­ample of what love, good doc­tors, medi­cine and work­ing can do.”

Work­ing the WARM­line

On a re­cent Fri­day morn­ing a man called the WARM­line at NAMI’s Jef­fer­son City of­fice. He’s called every week for five years.

Un­like a tra­di­tion­al emer­gency hot­line, the WARM­line ex­ists to provide more con­stant sup­port to 31 Mis­souri counties. People who work the WARM­line know what they’re talk­ing about: All have been dia­gnosed with men­tal ill­ness.

Jones is one of six re­spon­ders for the Jef­fer­son City of­fice. She has worked the phone line since it opened five years ago.

On this day, the caller wanted to talk about anxi­ety at­tacks he was hav­ing at his new job. Jones asked about the recent medi­cine his doc­tors had pre­scribed. She also offered en­cour­age­ment.

“I’m so glad you got a job,” she said. “It’s won­der­ful that you took that ini­ti­at­ive.”

Her reg­u­lar callers share in­tim­ate de­tails about their lives. In re­turn, she some­times shares her own ex­per­i­ences to gain their trust. She says it’s easi­er to open up to someone who’s been in a sim­il­ar place.

Fisc­her re­calls a man who called the phone line and was dis­ap­poin­ted to find her, not Jones, on the oth­er end.

“Kar­ren is on the oth­er line,” Fisc­her re­mem­bers say­ing. “But you can talk to me.”

“I can talk to you,” the man po­litely said. “But I would really rather spend my 20 minutes talk­ing to Kar­ren.”

Even though the ma­jor­ity of Jones calls are from reg­u­lars, she says she nev­er knows what she’s go­ing to get when she picks up the phone.

The WARM­line is not meant to handle emer­gen­cies. Phone re­spon­ders dir­ect such calls to the ap­pro­pri­ate re­sources, like the state Ac­cess Crisis In­ter­ven­tion line that is also con­trac­ted by the Mis­souri De­part­ment of Men­tal Health.

But some of the calls are from people in crisis, of­ten be­cause of lim­ited re­sources, such as a lack of hos­pit­al beds and af­ford­able care.

Jones helps these callers the best she can. She took a call from a wo­man driving a car with a sui­cid­al pas­sen­ger who had lost con­trol and was grow­ing in­creas­ingly vi­ol­ent. Jones told the driver to go the nearest emer­gency room and try to at­tract the at­ten­tion of a po­lice of­ficer along the way.

Jones says the callers are just as valu­able to her as she is to them.

“I feel needed,” she said. “I didn’t feel needed be­fore. I feel like I can make a dif­fer­ence.”

She knows from hard ex­per­i­ence what it’s like to not have any­one to turn to.

A troubled past

It’s 1974. Jones, then 29, lives on a farm in the small rur­al town of Lee­ton, out­side Kan­sas City. She works in a shoe fact­ory riv­et­ing straps onto boots. She’s been mar­ried for nine years and has an in­fant daugh­ter. She doesn’t love her hus­band — she mar­ried him to get away from her fam­ily.

She takes med­ic­a­tion for bouts of de­pres­sion, vis­its a coun­selor and has seen an­gels since she was 19. She has a his­tory of severe child­hood ab­use but tells no one.

She doesn’t know that her at­tempts at a nor­mal life are un­der­mined by oth­er men­tal dis­orders. She won’t know un­til years later that not every­one sees the an­gels that hov­er in the corners of rooms.

All she knows now is that she can’t stand her hus­band, the “emo­tion­al rock” who nev­er smiles and nev­er laughs, who’s nev­er sad and nev­er cries. All she knows is that she can no longer pre­tend to be the farm­er’s wife. All she knows is the med­ic­a­tion is no longer enough.

One day she comes home from work. She gets the mail. And sud­denly she can’t take her life an­oth­er minute. An­oth­er second. She loads up her car, grabs her daugh­ter and takes all the house­hold and pre­scrip­tion medi­cine she can find with her. Then she leaves.

She drives to a loc­al preach­er’s house. She asks him to take her daugh­ter for a couple of days.

She swal­lows the pills and drives, try­ing to leave life be­hind her. Drugged and scared, she crashes in­to a ditch.

Po­lice and para­med­ics ar­rive and take Jones from the itchy grass to Golden Val­ley Me­mori­al Hos­pit­al in Clin­ton to get her stom­ach pumped. It is here that she is dia­gnosed with ma­jor de­pres­sion. Later, she is eval­u­ated but not com­mit­ted at Fulton State Hos­pit­al, the old­est psy­chi­at­ric hos­pit­al west of the Mis­sis­sippi River.

The doc­tors tell her she’s had a psychot­ic break.

What do you need? She re­mem­bers them ask­ing.

What will help you?

Even now, Jones re­mem­bers look­ing out the win­dow on the drive to the Fulton State eval­u­ation. The day was bright and sunny. She watched big fluffy clouds float by from the back­seat of the car.

She’d been to Fulton be­fore — on a trip for psy­cho­logy class in high school. She was con­vinced pa­tients went in but nev­er came out.

“I thought that’s it, this is the end of the road,” Jones said. “I think that’s what gave me the fight to get out of there and do the right thing.”

So when the doc­tors asked Jones what she needed, she had an an­swer.

“I said, well, I need a di­vorce. And I need to move. And I want to be­come a nurse.”

Jones got her daugh­ter back and lived briefly with her fam­ily be­fore get­ting that di­vorce, seek­ing coun­sel­ing and en­rolling in nurs­ing school. Her tu­ition was paid by the state, which had a short­age of nurses. Jones gradu­ated in 1977 from the Mis­souri Board of Edu­ca­tion School of Prac­tic­al Nurs­ing pro­gram in Kan­sas City.

Not long after that, she met the man who was to be the love of her life – and one of her greatest trau­mas. They mar­ried in 1980. He ad­op­ted her daugh­ter. To­geth­er they moved to Hot Springs, Ark., where he got a job at a truss com­pany and she at an in­tens­ive care unit in a hos­pit­al.

Only later would she real­ize that the re­la­tion­ship helped lay the found­a­tion for her break­down eight years later.

What she re­mem­bers be­fore that: her hus­band’s drink­ing; the Labor Day week­end in 1985 when she dis­covered him mo­lest­ing her daugh­ter, then 13; an en­su­ing di­vorce; and two years later, a phone call when he con­vinced Jones that he had changed, and begged her to come back. She and her daugh­ter moved to Jef­fer­son City in 1988 to be with him.

Back in Mis­souri, Jones got a job in the in­tens­ive care unit at St. Mary’s Hos­pit­al. The three lived to­geth­er for one month be­fore she real­ized her ex-hus­band’s old drink­ing habits had not changed.

On their own again, the moth­er and daugh­ter were home­less. They lived at the Rape and Ab­use Crisis Ser­vices shel­ter for a couple of months un­til the pro­gram provided an apart­ment.

Jones says 1988 and the months that fol­lowed are a blur for her. Symp­toms of dis­orders, some still un­dia­gnosed, came to a head as she tried to deal with the emo­tion­al and phys­ic­al re­per­cus­sions of her daugh­ter’s sexu­al ab­use, the trauma of her mar­riages and her own child­hood ab­use.

She las­ted one month at St. Mary’s. She was as­signed to fill in at the psy­chi­at­ric unit and real­ized she was sick­er than some of the people there. She hal­lu­cin­ated of­ten, lost time and was severely de­pressed and anxious.

“I al­ways felt that nurs­ing was a pri­or­ity, and if you can’t do it and you can’t do it right, then you need to not be do­ing it,” she said.

Jones doesn’t re­mem­ber who ap­plied for So­cial Se­cur­ity dis­ab­il­ity on her be­half. She thinks it might have been an em­ploy­ee from Path­ways, a com­munity-based men­tal health cen­ter where she sought coun­sel­ing and sup­port dur­ing this period of time.

She was hos­pit­al­ized five times that year for severe de­pres­sion and sui­cide at­tempts. Dur­ing these hos­pit­al­iz­a­tions, she of­fi­cially learned all of her dia­gnoses — ma­jor de­pres­sion, post-trau­mat­ic stress dis­order, schi­zoaf­fect­ive dis­order and dis­so­ci­at­ive iden­tity dis­order.

A his­tory of ab­use

As a child grow­ing up in Lee’s Sum­mit, Jones slept with her moth­er and two sis­ters in a potato cel­lar in her grand­par­ents’ back­yard. The chil­dren slept in the ve­get­able bins on the sides of cel­lar. Jones isn’t sure why they didn’t sleep in the house with her step­fath­er, grand­par­ents and ex­ten­ded fam­ily.

What she does re­mem­ber is that she was phys­ic­ally, emo­tion­ally and sexu­ally ab­used. She says her moth­er beat her and then hid her when guests came to vis­it; her step­fath­er threatened vi­ol­ence and of­ten ac­ted on those threats; her step­fath­er and grand­fath­er were sexu­ally ab­us­ive.

When the ab­use happened — hor­rible things Jones doesn’t de­scribe — she’d find her­self on a shelf near the ceil­ing of the trail­er where the bad things happened. Look­ing down at what was hap­pen­ing, she’d feel noth­ing, dis­con­nec­ted. She’d leave her body and wouldn’t re­turn un­til the hor­rible things were over.

When some people, es­pe­cially chil­dren, ex­per­i­ence something so hor­rif­ic, so trau­mat­ic and ter­ri­fy­ing that they do not know how to pro­cess what is hap­pen­ing to them, they need to find a way to handle the pain.

Today, Jones says dis­so­ci­at­ive iden­tity dis­order ex­plains her out-of-body-ex­per­i­ences. Each time she left her body, the hor­rible things that happened to the chil­dren she watched take the brunt of her pain from the shelf near the ceil­ing were tucked away in a little com­part­ment, a new per­son­al­ity.

“And they are all there, be­cause they pro­tec­ted you from something so hor­rif­ic that you couldn’t tol­er­ate it.”

She pauses.

“So you didn’t have to feel it.”

In the past, if Jones be­came agit­ated or stressed enough, her mind shif­ted between those com­part­ments. She’d be un­aware of what was hap­pen­ing to her, caus­ing her to lose time.

Jones says her trau­mat­ic child­hood caused post-trau­mat­ic stress dis­order and dis­so­ci­at­ive iden­tity dis­order. She thinks trauma also played roles in her de­pres­sion and schi­zoaf­fect­ive dis­order, but she may be ge­net­ic­ally prone to either of those dis­orders as well.

Pro­cessing trauma

It is 2008 or 2009. Jones has a ther­ap­ist in Columbia. During one session, the ther­ap­ist pulls out a nail file and sud­denly Jones finds her­self pan­ick­ing.

She shifts in­to one of her oth­er per­son­al­it­ies, one of her “com­part­ment people.” Jones’ child­hood trau­mas some­times in­volved knives — she thinks the nail file is a knife and is go­ing to hurt her.

She pre­pares to de­fend her­self if she’s at­tacked. The ther­ap­ist real­izes what is hap­pen­ing.

“It’s just a nail file,” Jones re­mem­bers her say­ing. “See it. Touch it.”

Jones is brought back from the brink.

She vis­its a psy­chi­at­rist on Mondays who man­ages her med­ic­a­tions and a dif­fer­ent ther­ap­ist on Thursdays who spe­cial­izes in dis­so­ci­at­ive iden­tity dis­order.

Dur­ing vis­its to her ther­ap­ist, Jones some­times goes to a place she’s cre­ated in her mind. There is a big tree and a tree house at the top of a slop­ing hill. The hill over­looks a crys­tal clear lake. There is hon­ey­suckle. Lots of it. It’s peace­ful, safe.

Her safe place helps her pro­cess the trau­mat­ic memor­ies of her child­hood that for years she would not talk about. She says she’s still work­ing through new ma­ter­i­al and has dis­covered 12 sep­ar­ate per­son­al­it­ies through her treat­ment, though there may be oth­ers.

When she began work­ing with her ther­ap­ist years ago, she couldn’t af­ford the ses­sions. But the ther­ap­ist, who asked not to be iden­ti­fied for this story, offered to work with her for free. Jones says the ther­ap­ist told her that she had one of the worst cases of ab­use she had ever seen.

Ther­apy also helps Jones pro­cess her hal­lu­cin­a­tions, like the an­gels that she finds com­fort­ing.

“My doc­tors and ther­ap­ist don’t like it,” she says, laugh­ing. “But I en­joy them.”

Today, Jones pays her ther­ap­ist when she can, giv­ing her some money every month. She uses Medi­care in­sur­ance to pay for her psy­chi­at­rist.

The right com­bin­a­tion

In late March, Jones for­got to take her day­time med­ic­a­tion but took her night­time med­ic­a­tion as usu­al. She had night­mares and fright­en­ing hal­lu­cin­a­tions throughout the night. She felt nor­mal again after tak­ing her medi­cine reg­u­larly for a few days.

She must be strict about tak­ing the med­ic­a­tion she’s been pre­scribed.

She’s taken vari­ous med­ic­a­tions for her dis­orders since the 1970s but has endured years of dif­fer­ent doc­tors and ex­per­i­ments with dif­fer­ent med­ic­a­tions.

Today, she’s on a com­bin­a­tion that works. She takes med­ic­a­tion daily for de­pres­sion and anxi­ety. She takes oth­er med­ic­a­tion for chron­ic health prob­lems, like hy­po­thyroid­ism and os­teo­poros­is.

Her med­ic­a­tion costs more than $3,000 a month, but Medi­care and Medi­caid enable her to af­ford it. She pays a monthly “spend­down” fee, sim­il­ar to an in­sur­ance premi­um, that makes her in­come low enough to qual­i­fy for Medi­caid. The state pays her Medi­care premi­ums and co-in­sur­ance be­cause of her low in­come.

Jones pays for ba­sic liv­ing ex­penses, such as food and rent, with her So­cial Se­cur­ity in­come, $906 a month.

She says it’s hard to make ends meet. Oc­ca­sion­ally she goes to food banks. She lives in an apart­ment build­ing owned by the Jef­fer­son City Hous­ing Au­thor­ity, where her rent is pro­rated to her in­come.

The NAMI fam­ily

The Jef­fer­son City NAMI of­fice is made up of a tight-knit group of people touched by men­tal ill­ness. These people are each oth­er’s safety net and Jones refers to her co-work­ers as her “NAMI fam­ily.”

They have lent her money, fed her and re­minded her that she is valu­able and loved. They’ve watched Jones cycle through hos­pit­al­iz­a­tions and struggle when her medications were off.

There is Fisc­her, whose puppy, Tal­lu­lah, of­ten vis­its the of­fice and fol­lows Jones around wherever she goes. Fisch­er has fed Jones, housed her at times and taught her to keep a budget.

There is NAMI's ex­ec­ut­ive dir­ect­or, Cindi Keele, who leaves big lip­stick prints on Jones’ cheek when she kisses her at work. When Jones’ car broke down sev­er­al years ago, Keele wrote a per­son­al check to cover the dam­age, told her it was a gift and re­fused money in re­turn.

There is Alice Kli­eth­er­mes, an­oth­er WARM­line re­spon­der, who once discovered where Jones was hos­pit­al­ized by call­ing every psy­chi­at­ric ward and pre­tend­ing to be Jones’ sis­ter.

Oth­er sup­port groups have been there for Jones as well. She’s at­ten­ded an Adult Chil­dren of Dys­func­tion­al Fam­il­ies group for the past sev­en years. It’s a 12-step pro­gram, and this year she re­ceived her sev­en-year token.

Jones says the hard­est thing is watch­ing someone fall through the mental health safety net.

She remembers a family that needed NAMI's help to manage a suicidal son. The son even­tu­ally took his own life. She at­ten­ded the fu­ner­al with oth­er NAMI mem­bers.

“You think, if I had just done one thing dif­fer­ent, maybe it would have made a dif­fer­ence,” she said.

"But you’ve got to keep on try­ing.”

Re­mis­sion, not re­cov­ery

Jones still sees an­gels.

They are small, petite and pretty. Their bod­ies are the size of a fin­ger. Their wings the size of a hand. They don’t speak, but they do look pleas­antly at Jones and make her feel safe.

She knows they are hal­lu­cin­a­tions, part of an ill­ness that she will likely al­ways have.

“This is the way I look at it,” Jones says. “There’s re­mis­sion. I don’t know if I be­lieve whole­heartedly in re­cov­ery. I think you are on the road to re­cov­ery and you work to­ward re­cov­ery and that’s your goal.

"But very few people I know have ever reached full re­cov­ery, where they can say — no medi­cine, no noth­ing, I’ll nev­er see a coun­selor or psy­chi­at­rist again. It just doesn’t hap­pen that way.”

What she does know is that con­sist­ent care has helped her to a stable place, a place where she can safely pro­cess the trauma of her past and move bey­ond it, where she can play an im­port­ant role in a com­munity that helps those that need it — a place where Jones, who be­lieves she will nev­er live without men­tal ill­ness, can laugh and say she feels in­cred­ibly lucky.


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Comments

Harold Maio April 29, 2012 | 10:45 p.m.

People living with mental illness face a harsh reality. Stigma surrounds disorders and diminishing resources make help harder to find. While

Who issues the invective "stigma" harms. Naively, or viciously, the harm is the same.

When a school issues it, the school harms not only its students, but every interaction they will have. I presume you intend me no harm, your invective does that by itself.

To the claim:
The majority of us face no such invective. It is a prejudice of NAMI, they relentlessly press it.
Of great interest to me is the transfer of metaphors. The transfer of the invective "stigma" from NAMI to this paper is example. "Separate but equal" was an earlier example, and "ethnic cleansing" was another. Both made seamless transfers to journalism.

Of course the transfer of prejudices from a society to its education system is not unusual, ergo, the transfer of language is not. It is still disappointing to encounter.

Tom, you have transferred this metaphor several times, can you find a way to stop?
A pledge for editors:

You may not direct a “stigma” against any member of my family, any employee, any acquaintance or fellow through my paper.
You may not use my paper (journal, radio station, TV station, website, my individual self) as a resource for promoting a “stigma.”
My paper will not accept a paid advertisement promoting a “stigma,” nor an article.

Proactively, you can take a stand against promoting prejudices, a stand against those who do so, willfully, maliciously or naively.

Harold A. Maio, retired mental health editor

(Report Comment)
Matthew Schacht April 30, 2012 | 8:29 p.m.

Nicely done. I shared this story with a relative, who also suffered childhood abuse, became a nurse, and now treats individuals with mental illness. I'm hoping your story will help me have conversations with her. Also, when I shared your story, this is what my relative said:

"Too bad her [Jones'] angels, who help her know if a room is safe, have to be turned into pathology... I'm glad the medication doesn't erase them and she can still use angels as a way to stay safe.

"The way I see it is that if something helps a person to cope and be stronger it is simply wrong to declare that thing a symptom of illness. Illness is what makes you sick - not what helps you feel safe and get better...."

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