Leo’s Story: Downwardly Mobile

The grizzled, wiry guy on the bicycle waited for the light to change.  He was decked out like any long-distance road cyclist: helmet with rear-view mirror, gloves, cycling togs, panniers, plastic kid’s beach pail…the light changed, and I was off, leaving him to pedal wherever his wheels carried him.

I loaded up the big machines in the laundromat in the little town on the Oregon coast.  Laundry time happens every two weeks for me.  I’d rather do a bunch at once and get it over with.

And here comes my bicyclist!  Looks like he’s doing laundry too.  He needs change, but the change machine doesn’t like his crumpled dollar bills.  He’s off to McDonald’s to buy lunch and get some change.  Would I watch his stuff?  Sure.  I’ll be here for another hour.

He returns indignant: McDonald’s is so expensive!  He likes to go to Burger King because they have these pancakes for $1.89, and if he buys two that will carry him through the whole day…wait, says my brain.  This is not adding up.

I take a closer look.

His clothes are the clothes of a long-distance cyclist…but they’re old and frayed, and he’s wearing multiple layers that look kind of….permanent.  The shoes had been expensive, in their day.  The gear–his tent, sleeping bag, panniers–had seen a lot of time and weather.  What’s his story?

But look at him, he’s pale and shaking from hunger!

“Hey man, you want a quesadilla?” I volunteer.  His eyes popped.

“Yes, I’d love one!”

“Fine, why don’t you get your laundry started, and I’ll yell when it’s ready.”

I made two, loaded with cheese and avocado.  I love to feed people!

I handed Leo, for that is his name, a paper plate of food.  He inhaled it.  Color entered his face.

Time for me to put my things in the dryer and find out what was up with Leo.  One of the fun parts about living on the road is that I meet so many people with interesting stories!

From the get-go, it was clear that there was more to Leo than met the eye.  ADHD for starters!  A brilliant mind, but no solidity.  Mercurial, is the word that presented itself.  He was all over the place.

But I knew he had a story to tell.  I wanted to sit down with him and listen, if he wanted to tell it.  And he wanted to tell it, very much!  

His present strategy for survival, which got him through the terrible winter of 2016-17, is to use $5 a night of his $575/month Social Security check to camp in one of several State Parks along his route on the Coastal Highway of Oregon.  That way he can put up his tent, use the restrooms, and even get a shower if he has enough quarters (25¢ a minute for a shower).  The Visitors’ Centers have free hot coffee, and sometimes a fire in the fireplace.

I arranged to camp in my van at his destination park for the night.  We would meet for coffee in the morning, and he would tell me his story.

He found my campsite that evening.  Immediately he picked up on the guitar case that occupies my passenger seat.  I explained that it’s actually a giant ukulele, but since my left wrist is trashed, I can’t play it.

“When I was four years old,” he began eagerly, “I guess I drove my dad nuts bouncing around, so he handed me a ukulele, and that…just…did it for me.  I never did anything else in my life but play that ukulele, and later on the guitar.  I was playing in stage jazz bands before I was twelve.”

Somehow I didn’t think he was bullshitting.  I handed him the four-string guitar.  He sat down, looking again like a starving man, made some apology for his fingers being soft, and wrapped his hand around the guitar’s neck…

Jazz came out.  Really truly hot jazz, like that guitar was meant to play!

“Leo!  Man, you’re great!  What happened?  How come you’re not playing?”

He was riding his bike in downtown Portland, in the rain, and a near-miss with a car door catapulted him off his bike.  He made a one-point landing on his left hand….no fractures, but he damaged soft tissue, ligaments and such, and his hand has never worked the same since.

Weird, I thought.  My left hand has been through all kinds of soft tissue hell, too.  I can relate.

The day was drawing to a misty Oregon Coast close.  We strolled down to the creek that made its last tumbling rush to the ocean passing under a viaduct that held up Highway 101.  A soggy wind blew clouds of salty damp off the Pacific and into our hair and lungs.  We found shelter behind a bridge piling.

There Leo told me about his life.  He had married late, after a long run of playing professionally.  He had a daughter whom he adored.  He had stayed home, kept house, taken care of his daughter.

“I was the primary caretaker,” he said, and his eyes flipped through changes like mood rings.  I waited to hear the story.

His wife had gone into a professional field.  They bought a home in Upstate New York.  Life was good…except….his wife began to develop some disturbing behaviors toward his daughter.  I’m not going to reveal those, for the sake of preserving confidentiality; but I will say that although it would be difficult to hang the term “abusive” on them, they certainly push those boundaries.

These and other behaviors led to a constant state of tension.  He wanted them to go to couples counseling; she refused, so he went by himself.

One day she demanded a divorce.  He didn’t want to leave his daughter, but in order to save her from an ongoing ugly scene, he moved out.

Leo’s learning disorder kept him from going to college.  But he was playing in jazz orchestras again most nights, and made enough to keep himself.

After a few years his mother got sick, and Leo moved in with her.  He cared for her until her death just a couple of years ago.  She left him $30,000, half of which he gave to his daughter, who is now grown.  With the other half, he moved to the West Coast, hoping to start over.  He was playing in a jazz combo in Portland when he injured his hand.  He’d banked his inheritance, which he hoped not to touch.

Leo decided to move to Eugene, as he knew some people there.  He couch surfed for months, searching for work, until his comfort level with couch surfing wore out and he began to hunt for an apartment.  That was when he ran into the catch-22.

The apartment managers refused to rent to someone without a job, even though he had his grub stake of $15,000 that he’d carefully preserved.

Employers, on the other hand, demanded a permanent address.  

Leo went around and around like that, trying to find an apartment that would take him without a job, and a job that would take him without an apartment.  

He used up most of his money paying for cheap motel rooms.  Then he bought a tent and moved outside.

He spent all of last winter, with its record rainfall, pedaling from one Oregon Coast State Park to another.  There’s a 3 night stay limit, instituted by the State Parks so that they don’t become fixed homeless encampments: every three days he must pack up and move to one of the other State Parks along a 20 mile stretch of the Coastal Highway.  He doesn’t want to be associated with the homeless that live outside just anywhere.  

Darkness and silence descended, broken on occasion by groups of rowdy teens galloping back and forth under the bridge.

“If you could give someone advice, someone who was in the position you were in, when you were still kind of housed but knew you were headed toward homelessness, what would you tell them?”  I don’t know exactly why that question came into my head; it popped out, and I waited as he collected his thoughts.

“I’d tell them, don’t wait till your money is all gone before you move outside.”

Breaking The Silence of Stigma: Lunch Sketch

Today’s edition of Breaking The Silence of Stigma/Voices of Mental Illness is honored to have Jared of Lunch Sketch as our interviewee.  If you haven’t seen Jared’s amazing art blog, Lunch Sketch, I advise you to hop right over there as soon as you finish reading this wonderful interview!  So let’s dive right in!

BSS: How long have you known that you are living with a mental illness?

LS: Almost 10 years now.

BSS: Can you share with us your diagnosis/diagnoses?

LS: Generalised Anxiety Disorder, Social Anxiety Disorder, and Depression.

BSS: When were you diagnosed with these?

LS: Almost 10 years ago.

BSS: How were they diagnosed?  Did you have any special testing?

LS: I had a series of health scares, starting with Bell’s Palsy which I never recovered from and underwent many tests to ensure it was not a tumor. I then had a case of pericarditis misdiagnosed as a heart attack – this included prepping me with morphine drips and calling my next of kin (my wife who was 7 months pregnant with our third, Emma) up to the hospital. Next I saw a doctor about a lesion on my lip and was told it was cancerous and that I would need a large portion of my lower lip removed – fortunately family forced me to get a second opinion with a dermatological specialist who informed me it was (if anything) “pre-pre-cancerous” and nothing I couldn’t keep on top of with a tube of lip balm.

Haha. So special testing? Hmmm … maybe too much testing 😉

In addition to all of the above, I was constantly sick and tired. For almost a year, during all of this, I never wanted to go out, I would just go into our bedroom after work (spending no time with my family) and slept through most weekends.

I ended up crying in my doctor’s office like a little kid. I told her I was going to die!  I had a “Final Destination” style idea that all these near misses meant it was my time … and eventually something would stick. I distinctly remember sobbing, “I am sick and tired of always being sick and tired”. I think I remember those words best, because they are lyrics from Anastacia’s hit song and I was embarrassed to say them, but had no other words to describe my feelings.

My GP asked me a series of questions and then told me she thought I have health related anxiety, which was causing me to be depressed. I did not believe her and was frustrated she could not see I just needed tests to find whatever was going to get me next!

She gave me a book (Taming the Black Dog – by Bev Aisbett) and a video, insisting I read and watch them.  I did, and it did not take me very long to realize she was right. The book and video described “me” … even though I really didn’t want it to.  It was undeniable.

BSS: Have you ever been hospitalized due to your illness?

LS: No.

BSS: Are you on medications for your illness?  Do they help?  What about side effects?

LS: I was on fluoxetine for 12months and in that time really worked hard at getting my diet, mental health and physical health in order. I was fortunate enough to have work pay for a psychologist at that time and she helped me also with some cognitive training and other coping tools.

I was happy on the fluoxetine (after the initial nausea), but part of me worried that the medication was desensitizing me to health problems (lumps, sores, aches and pains) which I would get looked at if I wasn’t on medication. The worry grew and my doctor and I decided maybe now that I knew about my mental illness and had more training and awareness in managing it, I should try going without.

I have not been back on it since, but there have been times I considered seeing my doctor for another script. It absolutely does help and I would not hesitate to go back on it if I felt myself getting too lost for too long.

Not so much a stigma for me with the medication. It just increases my anxiety in a strange way, which I hope I explained well enough.

BSS: What other things do you do to help with your illness?  Do you go to individual therapy?  Group? Other things?  What, if anything, seems to help?

LS:  I eat well and exercise frequently. Not gym exercise so much (although have recently joined one), but outdoors stuff like ocean kayaking, bike riding, hiking and jogging. Knowing I am looking after myself physically helps me to rationalize risk with my irrational health anxieties.

To manage my social anxiety I avoid too much socializing. Being a fairly solid introvert who married a very strong extravert, we were going out and had people over almost every night and weekend. We no longer do this. My wife still enjoys a very busy social life with her girlfriends and we also go out together as often as we can. But she knows I cannot do too much in a row and will make sure a busy weekend is followed by a very quiet weekend (even if just for me). I am not comfortable in crowds and social environments. I get an overwhelming feeling of needing to escape (like how I imagine claustrophobia would feel).

One evening recently when visiting friends – my wife was not ready to go, but I was – I left her the car and walked the 1km trip home (with my youngest on my shoulders). My wife understood, but I am sure our friends thought I was odd … “can’t he just wait another 30 minutes?” No I couldn’t!

I guess for us it has been about understanding and balancing our needs.

For my depression I ensure I get enough sleep (but not too much).  But I also sketch, write and have lots of “me” time. Sketching calms me and focuses my mind on just one thing. I find sketching particularly good for me to process feelings at times. I can spend hours and hours on a single piece related to a feeling I am trying to process and the time sketching is uniquely therapeutic … almost like an acceptance or deeper understanding of myself and my thoughts, without all the negativity and depressive thinking and behaviours that would otherwise result. I hope that makes sense …

I don’t do any social media except for my WordPress blog. No FB, no Twitter, no Instagram. Yet over the past 2 years I have discovered a sense of community here. Becoming one of the authors for Canvas of the Minds has furthered this sense of belonging and made me not feel so alone and strange. Not just the other authors on that blog, but readers also have helped me immensely (some who probably will never know how much they did). I guess for now, that is my “Group”.

BSS: How has your illness impacted your life (jobs, education, relationships, children, alcohol, drug abuse…..

LS: Negatively in all areas (except substance abuse) I would have to say.

Job: I could get so much further in my career and would pursue such a path if I was not aware of my limitations and the effects of additional stress on my mental health. I am content to just hold my own in my current role. Our CEO recently mentioned to me that he thinks some of the Managers are point scoring because they want to be his successor. I told him to count me out, because I am not interested in his job at all. Again, he probably thinks I am lazy or lacking ambition, but I have been learning to care less about the judgments of others.

Education: A few years ago, I attempted an MBA whilst working. Got through 3 subjects before realizing I could not do it. The study was taking up what time I had left and needed for “me” to cope. Work needs me, my family needs me, and in between those I find and need time for me.

Relationships: The doctor visit I mentioned above was a week after my wife said she could not cope with me anymore. I reached a point where I was disconnected from her and our kids. I was always down and took them down with me. So yeah … had I not been diagnosed and treated accordingly … they may not be with me now as I type this … or to be even more brutally honest I may not have been here to type this … I considered suicide several times, but never went beyond ideation.

BSS: Have you ever felt discriminated against because of your illness, or had to deal with disparaging comments, denied a job or other opportunities?

LS: I guess I discussed my self-imposed denial of job opportunities above. Have not had to deal with direct disparaging comments … but am frustrated every time I hear people at work and socially refer negatively to what they see as depressive or bipolar behaviours in others.

I think it is the dismissiveness of insensitive people that bugs me the most. There is no care in the words of someone who says things like, “I dunno, maybe she’s depressed or something weird like that” … or … “God! It’s like he’s bipolar or something!”

If she is depressed … if he is bipolar … they need your friendship, understanding and support … not your sarcastic wit!

BSS: If you could give advice to someone else struggling with mental illness, what would it be?

LS: Get support. Whether it is just one person or many people … do not go it alone.

Read good literature and learn as much as you can about your illness. Understanding my personality, my past and the nature of my illness has been so important in holding my ground and even gaining some ground over time.

LSJared

 

Breaking The Silence of Stigma: Laura P. Schulman

alien woman headThis Wednesday’s Breaking The Silence of Stigma interviewee is….me!  So, without further ado, let’s jump right into the shark pool!

BSS: How long have you known that you are living with a mental illness?

LPS: When I was putting myself through a very expensive college, scrambling for every dime I could earn, I saw an ad in the campus newspaper recruiting paid volunteers for a pharmaceutical study, for some kind of psychoactive drug.  Get paid to take drugs?   Oh boy!  Pennies from heaven!  So I applied.

I had to take a whole day’s worth of psychological screening tests to determine if I was suitable for the study.  I’ve always been good at tests!  I aced ‘em all!  Or so I thought.

The following evening I got a call from somebody in the psychology department.  He told me that the tests indicated that I was suffering from Major Depressive Disorder, and he ordered me to appear at Student Mental Health the following day.  And, oh my, I was disappointed to hear that I would not be accepted for the drug study.  Rats.

I couldn’t really figure out what all the fuss was: Major Depressive Disorder?  Hell, I didn’t feel any different than I always felt.  I mean, I’ve got an artistic soul, and those are always tormented, aren’t they?  If I didn’t feel intensely sad and/or elated all the time, how could I make my art, write my poetry, go without sleep for virtually days at a time….certainly there had to be some mistake.

But I showed up at Student Mental Health at the appointed hour.  A nice poufy lady welcomed me into her office and sat down on the other side of the desk, gesturing me into the chair on my side.  She perused a chart.  It was my chart.  This is significant, because I had never had a chart before.

She looked up at me and smiled.  She looked down at my chart and frowned.

“It says here that you’re depressed.  My goodness, you’re a straight-A student.  You have a good job in a lab.  You’re good looking.”

She looked up at me again and smiled again.

“So why are you depressed?”

I got up, thanked the nice lady, and walked out.

 BSS: Can you share with us your diagnosis/diagnoses?  When were you diagnosed with these?  How were they diagnosed?  Did you have any special testing?

LPS: I have Bipolar Disorder, Post Traumatic Stress Disorder, Dysthymia, and a touch of OCD.  And I’m an Aspie, as in Asperger Syndrome.  In 1996, I had a battery of tests at the University of Utah in Salt Lake City.  They totally missed the Bipolar and came up with Major Depressive Disorder, probably because I still didn’t think any of the hypomanic things I was doing were abnormal.  In 2005 I had the tests repeated at the University of Washington in Seattle, and they nailed the BP, the PTSD, the Dysthymia, and told me I scored pretty high on the OCD scale.  The Aspie-ness was diagnosed collaboratively with my Ph.D. psychologist, along with some testing.

BSS: Was your illness diagnosed correctly the first time, or did it take time before the right diagnosis was arrived at?  Do you feel that you do indeed have the correct diagnosis now?

LPS: As I said above, the diagnostic process was pretty choppy, until I arrived at the University of Washington Mood Disorders Center, and got what I consider to be a very comprehensive and correct work-up.  I feel confident that my diagnoses are definitive and correct.  This has helped immensely.

BSS: Have you ever been hospitalized due to your illness?  How many times?  Do you think it helped?

LPS: I have been hospitalized twice.  The first time was because I was off meds for fear of being “discovered” by my hospital administrator.  I know, right?  The second was because of wrong medication from a terrible psychiatrist, combined with an over-the-top relationship with another poorly medicated Bipolar.  They definitely helped, because they kept me away from lethal things long enough for my suicidality to blow over.  The second hospitalization was great in another way.  My then-psychiatrist, who was terrible, was on vacation, and my current shrink-o-matic, who is wonderful, was covering for her.  I loved him immediately and begged him to let me be his patient.  That was in 2002.  He’s still my shrink-o.

BSS: Are you on medications for your illness?  Do they help?  What about side effects?

LPS: Oh yes. I’m currently on six different medications.  Yes, they certainly help.  My symptoms are, thank God, mostly under control.  I think.  Side effects….lots.  The worst is from the Lithium, which causes me balance problems (I took a bad fall just a couple of days ago, got a nice concussion), and a tremor that is sometimes so bad that I can’t type!  My handwriting has become deplorable due to the tremor, too, especially my Hebrew!

BSS: Have you ever had ECT (Electroconvulsive therapy)?

LPS: No. I have had nearly 100 rTMS (repetitive transcranial magnetic stimulation) treatments, which literally saved my life. I have had lasting (and I hope, permanent) positive results.

BSS: What other things do you do to help with your illness?  Do you go to individual therapy?

LPS: I have a really wonderful therapist whom I have seen on and off for fourteen years.  She really hits me where I live, and, in a compassionate way, kicks my butt regularly.  In addition, I’m a compulsive blogger and am blessed to have an ever-expanding group of wonderful fellow Mental Illness bloggers, who are a huge support to me.  Thank you, Mental Bloggies!  I find that being a Mental Health advocate gives me direction and a great deal of satisfaction.  I also have a Psychiatric Service Dog, who helps me in many ways.  She helps me to stay grounded, on task, provides structure to my otherwise fairly aimless life, and she is invaluable when I have a PTSD episode.  If I dissociate she licks me till I come back.  And if I am having a flashback that someone is in the room, all I have to do is look at her, because if someone was really trying to enter my house she would go off like a barking bomb.  So if she’s quiet, I know that I can be sure it’s “just” a flashback and will go away eventually.

BSS: How has your illness impacted your life (jobs, education, relationships, children, alcohol, drug abuse….._)

LPS: Ugh.  Can’t you ask me something else?  Damn me.  OK, here’s your answer:  Yes.  Everything.  I have never held a job for more than two years, because I eventually get manic and fired, or depressed and fired….Now I’ve been certified by a Federal judge to be 100% disabled.  That has taken some getting used to, and I still get weepy when I think about my lost dreams.  I was born to be a doctor, fought through thick and thin to be one, was a really good one, and now allthat is gone…it’s rough.

Education has not been a problem because I am an Aspie and I get straight A’s.

My relationships have been very typically Bipolar:  elation, crash, elation, crash…and then my paranoia sets in, and I’m out of there.  I recently took a seven-year break from relationships, consciously.  Then I opened myself to someone who showed up in my life, and….turned out to be waaaaaay crazier than I am, so….I’m really happy with my life as a single person, and I don’t really trust myself with relationships.  So I might just stay single, except for my dog!

Alcohol—I have tried and tried to become an alcoholic, but it never took.  I’m only half kidding about that.  I hung out with alcoholics much of my life, and drank right along with them, but in reality I can’t handle more than half a beer, so I got disqualified.  Drugs, now, that’s something different.  I did a lot of psychedelics when I was young.  And I smoked a lot of pot.  But thank goodness I never took pills (other than acid or mescaline LOL), and I never shot up.  I did have a cocaine addiction though, which lasted for years.  Cocaine cured my depression, until it wore off and the crash was terrible.  I’ve been clean from that for over 30 years.

BSS: Have you ever felt discriminated against because of your illness, or had to deal with disparaging comments, denied a job or other opportunities?

LPS: Yes, yes, and yes.  As a doctor, having a mental illness is tricky business.  First of all, there’s the terrible schedule: being on-call overnight two or three times a week, which is horrible for stability in general and for medication schedule in particular.  Secondly, if one discloses one’s mental illness, one gets one’s license limited and one must have a supervisor, even if one is a senior physician who has never had a mishap of any kind in terms of patient care, clinical judgment, or even paperwork.  It’s humiliating.  I tried to go back into medicine after taking a break to get stable, and the licensing system made me go to a rehab program—even though I am not a drug addict (they never knew about the long-ago cocaine), because they lump mental illness in with addiction in what they call “behavioral medicine.”  They made me show up for a drug test once a week.  I was to do that for a year, before they would even give me a supervised position.  I was so humiliated that I gave it up and went back to my disability status.

In addition, one’s colleagues do not like to hear about one’s illness.  They tend to do things like turn around and walk away if one shares one’s mood or diagnosis.  So one learns to suffer in silence.

BSS: If you could give advice to someone else struggling with mental illness, what would it be?

LPS: Get the best psychiatrist and psychologist you possibly can, and keep them.  Do what they say, and if something doesn’t add up and you feel uncomfortable with their assessment or treatment, say so.  And if they get haughty about it, fire them and find a better one.  Your life is precious.

Find a genuine support network, in whatever way speaks to you.  I, for instance, relate better online, because face-to-face human contact makes my teeth itch (Aspie).  Others find great satisfaction and validation in volunteering.  Seek out a peer group.  Loneliness kills.  Get an emotional support animal, or a Psychiatric Service Dog if you need one.  If you are in a long-term relationship or marriage, and if you have children, be sure to keep everybody in the loop.  Don’t keep your illness a secret.  Secrets kill.  Open and honest relationships, including couples and family counseling if needed, are life-saving.  And don’t forget the kids!  They need help dealing with their feelings too.  My own experience has taught me that it’s tough being the child of a mentally ill person.  Get the kid(s) their own counselor.  It’s a great investment in your children’s future.

And when things get really dark and scary…..get help!  Reach out!  Don’t be embarrassed!  Get help!

Breaking the Silence of Stigma: Pride in Madness

madpridelogodesign1-300x279My guest on BSS today is Kristen, the author of the ground-breaking blog Pride In Madness.  Kristen has a unique and liberating approach to what most of us are accustomed to refer to as “mental illness,” including myself of course.  But Kristen has broken out of that mold, and has graciously agreed to share her very important views with us.

Breaking the Silence of Stigma: How long have you known that you are living with a mental illness?

Pride In Madness: I used to say I had a mental illness, back when I believed I was sick. Now, I believe that I am who I am and that person happens to be “different” from what society believes I should be. I do believe that I was born more emotional than most. My Mother reports that I didn’t let anyone but her and my Father hold me until I was a year old. I would continue to have attachment issues and be very shy. I was the child that would cry at the drop of a hat. It began causing problems in my mind when I was 11 years old, became more severe when I was 12 but I have known I was “different” for about 11 years.  I have been identifying as a Mad person for the past 4 years (Mad being a reclaimed term by some in the mental health community who believe that what we know of as “mental illness” is a part of being human and something that can be horrible but is also something worthy of celebration).

BSS: Can you share with us your diagnosis/diagnoses?

PIM: My first “diagnosis” was hormones at 13 years old. Dysthymia (chronic depression) followed when I was 16, than Borderline Personality Disorder at 18 and finally I received Borderline Personality Traits when I was 23 years old (I am 24, currently). My current traits diagnosis is just “on paper” meaning the psychiatrist I saw respected and agreed with my desire to not be labeled but for the sake of the system he had to write down something. If I need to explain to others what I experience I say that I have difficulty processing and at times regulating my anger.

BSS: How were they diagnosed?  Did you have any special testing?

 PIM: The “testing” part is a sore spot for me. I have been diagnosed within 45 minutes and before the official diagnosis I knew exactly what diagnosis the psychiatrist was getting at because of the questions they would ask. The fact of the matter is that there is no scientific or accurate testing for mental illness. I keep hearing that brains scans are showing what “depressed” and “borderline” brains look like but I have never been offered one. I read in Anatomy of an Epidemic by Robert Whitaker that your serotonin levels can be measured using your spinal fluid but, again, no one has ever given me that test. I value anecdotal evidence, don’t get me wrong, but I know that I have sat in front of a psychiatrist, lied, and gotten off the hook or gotten what I wanted.  If psychiatry wants me to take it seriously it needs to have better testing than what I choose to tell them about myself. I am a perfect example of how psychiatry’s “testing” is seriously flawed. When I was diagnosed with Dysthymia (chronic depression) the doctor said that I would always be depressed and need medication for the rest of my life. That is what chronic means after all. He was wrong. I have survived without medication and haven’t had symptoms of a mood disorder for the past 6 or so years.

BSS: Were you diagnosed correctly the first time, or did it take time before the right diagnosis was arrived at?  Do you feel that you do indeed have the correct diagnosis now?

PIM: If I use mainstream mental health thought, I believe that depression and borderline are the wrong diagnoses. When I heard that non-suicidal self injury disorder was a contender for the DSM V I was actually happy (and I hate the DSM so that’s saying something) because I hoped that proper research and treatment would follow for those of us who specifically engaged in that behaviour. Everything bad started when I self harmed but because I was diagnosed with disorders that saw self harm as a symptom the behaviour was actually never addressed. I have been self harming for 11 years and trying to figure it out on my own how to cope with the behaviour that has actually turned into an addiction. But I am happy to say that I am doing well with it! I’m very proud of myself! I believe that without a diagnosis I am living how I want to be living. Accepting myself and clearing out the bad in my life has done wonders for me. I am in place that I never thought was possible and since leaving the mental health system (returning only when I want to and on my terms) I have greatly improved. If I have to pick though, Borderline would be closest to my lived experience and offer me behavioural and emotional treatment options that I would find more desirable.  I am me!

BSS: Have you ever been hospitalized ?

 PIM: I have never been hospitalized and I believe this was the best course of action for me. When I was 16 years old I attempted to end my life and the psychiatrist asked my Father and I if I wanted to spend a few days at the hospital. Both I and my Father said no. This is still in some ways an issue because that particular hospital had a history or not caring about me. This was the hospital that dismissed my self harm and now they were dismissing my attempt to end my life. Again, using current mainstream mental health, this is beyond careless and poor practice. Still, I believe being in a hospital would have greatly set me back. The environment does not support the person I want to be. Those who love me are currently under strict instructions to never have me hospitalized unless I do it myself. I have been told before that since I haven’t been hospitalized then I must not be that “sick” or not “that bad”. This is a rude, damaging and incorrect assumption. I chose a path and it was one that did not include a hospital.

BSS: What has your experience been with medications?

PIM: I was on psychiatric medication for 2 years, beginning when I was 16. It was while I was on these drugs that I experienced the suicidality and homicidality adverse effects. These of course were ignored and contributed to my “mental illness”. I know that these thoughts, feelings and actions related to suicide and homicide were caused by the drugs because I had no desire to die or hurt others before or after the drugs. I have been psychiatric drug free for 6 years and have improved with each passing year. I do have an antipsychotic for the times I get too “up” in my rage but I tend to use it to shut my brain off so I can get some sleep. The last time I took this drug was early July 2013 and before that it was February 2013. I only use this drug when I need to and for the most part I ride out what I am feeling due to the drugs history of not liking my body and my desire to be in control of my body.

BSS: What other things do you do to feel as well as possible?

PIM: Activism is the single most important aspect of my wellbeing. I began engaging in activism in summer 2009 when I was entering my third year of university where I was studying social work. My activism has involved research, conference presentations, public speaking, peer support facilitation, blogging, Twitter, Facebook, articles, and anything I can get my hands on. It is through activism that I am able to engage in societal change and I have a voice now that I didn’t have when I was younger. It’s great to meet people who have been helped by a presentation I gave and it’s great for me to go home knowing that all the pain I went through is now doing something positive.

BSS: How have your symptoms impacted your life (jobs, education, relationships, children, alcohol, drug abuse…..

PIM: Regardless of how I want to view my experience it does impact my life but predominately my relationship with my partner. I love this man but past experiences with controlling partners have made me scared and I end up screaming and yelling at him because I feel with every inch of my body that he is trying to control me. I have a lot of difficulty controlling my anger but I do try my best and have learned distress tolerance, which is extremely helpful. I have more tools for coping now than I ever have and am more successful at using them. He knows that there is more to me than the rage that seeps out of me sometimes and most importantly I know there is more to me than the rage. I do also accept that it is there and the rage also creates the passion that drives me forward in my mental health advocacy work. All in all how I am impacts my life positively. I have come to accept my difficulties and can find the beauty in them.

BSS: Have you ever felt discriminated against, or had to deal with disparaging comments, denied a job or other opportunities?

PIM: I wish others knew how responsible they were for what I went through. I can of course take responsibility to an extent but there is only so much a young person can do when they’re called ugly and told no one will ever want to date them. Once those comments began to get to me and I turned to self harm, drinking, drugs and sex then I became a slut, druggie, “alcoholic”, crazy, freak, insane, psycho, sloppy seconds (in reference to having had sex before), and my personal “favourites”, suicidal cutter/suicidal slut. I was told then I should not go into social work because I’m not emotionally stable but I did and I’m great it! I am fearful about employment. Despite never losing a job because of any noticeable or perceived emotional issues it haunts me. I was told when I was younger than if an employer found out I was depressed that I would be fired. I go to work every day wondering if today will be the day that I “lose it”. I think this despite the overwhelming evidence that I am a top employee and extremely successful at my job (I work with children). Overall, it was just being made to feel like I was less than everyone else. I feel less shame about my extreme sadness, drug and alcohol abuse and suicidal attempt than I do about my self-harm. People still struggle with understanding that behaviour.

BSS: If you could give advice to someone else struggling with mental illness, what would it be?

PIM: If you want it then go get it!

Find comfort in discomfort!

Push yourself and you’ll be surprised how far you can go!

Take pride in yourself and your accomplishments!

Do what you need to do to ensure that you are in the place that you want to be in, a place that will make you happy!

Accept that things will get bad but that the good is worth it!

Write your own rules, do things for you!

BSS: Anything else you’d like to add?

PIM: I would not want anyone thinking that what I’ve experienced was solely based within me. The reason why I have become a better person is because I got rid of the emotionally abusive friendships and intimate relationships. What had me turn to self-harm in the first place was bullying. I was told by my male classmates that I was ugly and that no one would ever date me. Once I began self harming people then began calling me names and I was frequently abandoned by others because they couldn’t deal with how sad I was or they didn’t like that I was smoking, doing drugs, drinking and having sex. Boyfriends would control my every move. I was told who I could talk to, where I could go, what I could wear and 2 of them even interfered with my schooling by keeping me from studying and breaking up with me right before I went into an exam.

Once I established where I wanted to go and what I wanted out of life I began to clean up my life accordingly. DO NOT underestimate the power of outside forces in creating your misery. Most importantly do not underestimate yourself in being able to overcome your horrible experiences! ❤

BSS:  Thank you so much!  You’ve shared some really thought-provoking insights that will have me thinking over the status quo, and considering whether I should swallow what I’m told wholesale, or whether I should really take my well-being into my own hands, as you have, and reach for the stars!

Again, Kristen’s blog is Pride in Madness.  Go and read it.

Breaking the Silence of Stigma: Ruth Jacobs

Ruth Jacobs no borderWelcome to Breaking the Silence of Stigma, a series of very personal interviews with people who, like me and perhaps like you,       live with mental illness.

It’s only by breaking the silence and speaking out about the reality of living with mental illness that we have any chance of breaking the stigma that surrounds it.  It’s a silence that suffocates, that increases suffering….it’s a silence that kills.  

Our inaugural interviewee is the very brave Ruth Jacobs, published author, campaigner against sex trafficking and human rights violations, blogger, and mother.

Breaking the Silence of Stigma: Ruth, how long have you known that you are living with a mental illness?

Ruth:  Over twenty years.

BSS: Can you share with us your diagnosis/diagnoses?

Ruth: I have post traumatic stress disorder and bipolar – although the bipolar diagnosis is being reviewed by a new psychiatrist.

BSS:  When were you diagnosed with these?

Ruth:  I was diagnosed with a mild bipolar-like illness, cyclothymia, about fourteen or so years ago I think. It’s hard to remember as before then I had various other diagnoses. The bipolar worsened over the years until it was finally diagnosed bipolar type I.  I can’t remember when the post traumatic stress disorder was diagnosed, but certainly years after I first suffered symptoms.

BSS:  How were they diagnosed?  Did you have any special testing?

Ruth:  I am pretty sure the diagnoses have just been made from sessions with psychiatrists as an outpatient and inpatient. I don’t remember any special testing, though having said that I have a vague memory of wires attached to my head, but that might be from something medical; my memory is not good, which is probably caused by the PTSD, though could be from the numerous overdoses I took in my twenties.

BSS:  Have you ever been hospitalized due to your illness?  How many times?  Do you think it helped?

Ruth:  I have been hospitalized a few times. I can think of six but it might be seven. And actually it’s not all for my mental illness on its own, but mostly because I self-medicated with drugs. I had psychosis from crack a few times and I was a danger to myself so being hospitalized helped keep me safe for that period, but didn’t help with my mental illnesses. I was unhelpable most of those times because I wasn’t willing or wasn’t ready to give up drugs. When you are an intravenous user of heroin and crack, there isn’t much a psychiatrist can do about your mental illnesses.

BSS:  Are you on medications for your illness?  Do they help?  What about side effects?d

Ruth:  I have had so many medications and concoctions of medications, always with side effects though to varying degrees of severity. Most recently, a new psychiatrist has taken me off all medication so she can reevaluate the bipolar diagnosis. I am pleased about this, as I do prefer not to be on medication due to the side effects.

BSS: Have you ever had ECT (Electroconvulsive therapy)?

Ruth: Thankfully, I have never had that.

BSS:  What other things do you do to help with your illness?  Do you go to individual therapy?  Group? Other things?  What, if anything, seems to help?

Ruth:  I have had years of therapy, mainly individual though also in groups. Sometimes it has helped, other times not. I found eye movement therapy, EMDR, worked extremely well for some symptoms of PTSD, especially flashbacks, but it also reduced nightmares too. I had NLP at the same time and I believe that helped particularly with anchoring – something that has been very hard for me to cope with.

BSS:  How has your illness impacted your life?  Things like jobs, education, relationships, children, alcohol and drug abuse, etc.?

Ruth:  It’s affected all of it but I have to try to make the best with the cards I’ve been dealt. Although I can’t work full time at the moment, I still have writing and that’s a very important part of my life. I am sure it was my illness that enabled me to write my book; and I wouldn’t have had the knowledge without having lived the life.

BSS:  If you could give advice to someone else struggling with mental illness, what would it be?

Ruth:  Believe that no one is ever beyond hope. Reach out for help. Be honest – let those people know how you feel and what you need so they know how to help you. Don’t give up. If a medication isn’t working, ask to try another. If a therapy isn’t working, request a referral for a different kind – do your own research where necessary. If you don’t agree with your diagnosis, see if you can obtain a second opinion. If you are uncomfortable with your psychiatrist or other service provider, do what you can to be put under the care of another. I’ve found it helps to connect with other people also living with mental illness. So many people don’t understand and believe there is a way to ‘think’ yourself out of being mentally ill. In my depression, when it is already severe, this ludicrous belief is extraordinarily hurtful.

BSS:  Thanks so much, Ruth, for your incredibly candid interview.  It takes a lot of courage to break the silence of stigma.

Ruth Jacobs’ novel, Soul Destruction: Unforgivable is published by Caffeine Nights.

SD-front border

Read more about Soul Destruction, and about Ruth’s human rights campaigns, and her own brilliant interview series here.

Read Ruth’s blog and Soul Destruction Diary here.  While you’re there, consider picking up a copy of In Her Own Words….Interview With A London Call Girl, an interview that Ruth did during her research into prostitution in the 90′s.

Ruth’s recommended links:

Interview With Ruth Jacobs, Author and Anti-Trafficking Activist

I’m excited to have a guest on board here at Bipolar For Life:  Ruth Jacobs, author of the upcoming best-selling novel series Soul Destruction.  Part one of the series, Soul Destruction: Unforgivable, will be released worldwide on April 29, 2013.

Ruth Jacobs no border

Soul Survivor: Ruth’s gritty, hard-hitting novel features a more-or-less close-knit group of friends who have at least two things in common: drugs, and prostitution.  So what is this book doing on my blog, which tries its best to stay focused on mental health and child abuse issues?  Probably because this group of tough customers has more than just two things in common.

Let’s read a passage from Soul Destruction: Unforgivable, and then we can ask Ruth to help us understand.

Aunt Elsie made tea and they sat on their usual white stools at the white, plastic table in the kitchen. Elsie, as always, sat facing the back door and Shelley, facing the hall. From her chair, she could see the picture frames that stood on the hall table. Although she couldn‘t see the pictures, she knew each one from memory. The pictures were of happier times: baby pictures of her and William, a school picture of William when he was about ten, a school picture of Shelley taken around the same time, putting her at seven or eight, and a picture of them both with their mother before she became ill. That last picture, taken in Brighton in the summer of 1983, was from the last holiday they‘d had with just the three of them. Until that year, Rita had taken her and William to Brighton every summer. Neither she nor her mother had been back since, but William had, once.

Shelley gulped her tea and apologised to her aunt for the short visit. On her way to the front door, she stopped at the hall table. It was the missing pictures she noticed. There was no record from that last holiday until she was fifteen years old and William was seventeen. As if those years in between had never existed. Of course, they had. They all wanted to forget them. But how could she erase them when she‘d endured them? However much she tried, those years wouldn‘t stop replaying in her head. That‘s what caused the rage, the despair, and the excruciating pain that fed on her soul.

S/S: Ruth, this passage starts out looking pretty normal.  I mean, prostitutes don’t have aunts named Elsie with whom they have tea every week, do they?  What, you’re telling me that prostitutes are people like you and me?  Shocking.  But wait, reading on, we find that things are not so happy as they once were.  There seems to be a skeleton in the family closet, perhaps?

You and I have had some conversations regarding prostitution and what might set the stage for a girl or woman to become caught up in it.  Can you talk a bit about that, in the context of the passage we’ve quoted?  What is it here that might have propelled Shelley in the direction she’s taken?   Something happened, didn’t it, something terrible, it seems….

Ruth: Yes, something terrible did happen. I don’t want to give any spoilers about the book for people who will be reading it, but I think it’s very important to know that a large percentage of people in prostitution have a history of being abused as children, whether that be physical and/or sexual abuse. Childhood abuse can set them up as targets for pimps and traffickers. Many women in prostitution started as children. Children do not make these choices. They may be forced by another, they may be homeless, as some I know have been, and out of desperation for a roof over their head for a night or something to eat, they turn to prostitution. For some they have been treated and viewed as sex objects and feel that is their worth. There are more complexities in this, and studies and research into the links between childhood abuse and prostitution have been conducted. For anyone who would like to understand more, my dissertation on prostitution, which I undertook back in the late 1990s, can be read freely here http://soul-destruction.com/on-prostitution.

S/S: Let’s go on to another scene from your book.

Emotionally exhausted, Shelley slept until a nightmare woke her late afternoon. Swaddled in her favourite duvet, she shuffled along the cold, black and white floor tiles in the kitchen. She poured a glass of water and took it through to the lounge. She landed herself on the sofa, then picked up one of her new, sparkling dessert spoons and began cooking up her fix.

What she‘d heard from Tara yesterday shocked her. Not that another call girl would have a past like that, most of the hookers she knew did. The shock was that Tara knew what she had gone through as a child, yet hadn‘t confided in her. Was it her fault Tara had never been able to tell her? Possibly not – Tara hadn‘t told Nicole either. But Shelley knew she could have been a better friend. There were things she could have done differently, things she could have said differently, and things she could have not said at all. She remembered the cruel words she‘d spoken the day before.

Guilt grew from her gut and permeated her body. Her breathing shallowed. This had to be a big hit. It would take more heroin and crack than usual to change this feeling. This feeling on top of her grief, her anger, and her fears had done more than add to them. It felt as if they‘d all been amplified. The noise had to be muted.

The speedball she‘d prepared was overgenerous but essential. She needed to get to nirvana. Without a tourniquet, she squeezed her wrist and went straight for a visible vein in her hand.

She fell back on the sofa and thought this time she might die. This was overdose territory. She lost control of her body as she convulsed. She tried to scream for help but no words came, not recognisable words. She could hear herself babbling but couldn‘t tell if she was making those sounds or if they were coming from inside her head.

S/S: Now we’re hearing Shelley’s shock upon finding that her friend Tara, too, has things hidden in her past, things that she’s been unable to speak about, and Shelley’s over-amplified guilt at seeing herself as not having been a better friend.

Ruth, why would that upset Shelley to the point where she nearly kills herself to get away from the pain?

Ruth: It’s not that alone that brings Shelley to this point. Already being in an extremely dark place, the situation with Tara tips her over the edge. Shelley carries guilt that does not belong to her, as many survivors of abuse do, whether that be childhood abuse or being raped as an adult, for example. This victim-blaming culture perpetuates that. For example, when a woman is raped, some people will blame that rape on what she was wearing, whether she was drunk or had taken drugs, if she was out late at night alone etc. The rape is the fault of the rapist and no one else.

Shelley is a sensitive, kind and caring young woman. She is quick to take on responsibility for caretaking others, as she had as a child within her family, and still does during the time the novel is set in her early twenties. She feels inadequate, not good enough, in many ways. From being at the receiving end of abuse in her childhood and the negative messages that go along with that, she speaks to herself in that same way. In transactional analysis, a branch of psychiatry, it is said we have three ego states: parent, adult and child. The parent ego state is formed by what we hear from our parents/guardians as children. If they are berating when we are children, those ‘recordings’ play out in our heads as adults. It is possible to change these, but I have struggled with it myself.

S/S: So how does child abuse feed into prostitution?  What percentage of prostituted women were abused as children?  Is there a differential between different types of abuse, like physical, emotional, or sexual?  Does that matter?

Ruth: Various studies have been conducted in this. The figure I have from my dissertation is that 75% of women in prostitution have been victims of childhood sexual and physical abuse (WHISPER Oral History Project, 1987). A more recent UK study revealed that 45% suffered sexual abuse and 85% suffered physical abuse within their families (Home Office 2006).

From my personal experience of knowing many women in prostitution and many who have exited, all those I have discussed childhood abuse with have suffered that themselves. I have also known some men in prostitution, though only a few, and again, all those who I discussed childhood abuse with had suffered that too. Some people in prostitution have suffered emotional and verbal abuse in childhood. And there are some who will not have suffered abuse as children. But there is clearly a very strong link between childhood abuse and prostitution.

S/S: Thanks so much, Ruth, for helping us to understand some links between childhood abuse and prostitution.  As a pediatrician and adolescent medicine specialist, I saw many young people who had ended up on the streets doing whatever they needed to do to stay alive.  Many of them had to resort to prostitution just to buy food and have a place to stay at night, although many were homeless, largely due to drug addiction that ate up all their money.  When they came into my clinic, I had a golden opportunity to talk with them and ask about why they were out on the streets instead of living at home.  Many cited “mom’s boyfriend” who was either currently sexually abusing them or trying to.  Others spoke of ongoing physical abuse since early childhood; others said that their parents “just didn’t care about them and they felt better just being on their own.”  Often, I just couldn’t hold my tears back and sometimes they cried too, although most had trained themselves to have a tough exterior, out of necessity.

More about Ruth Jacobs and her writings:

Soul Destruction: Unforgivable

SD-front border 

Enter the bleak existence of a call girl haunted by the atrocities of her childhood. In the spring of 1997, Shelley Hansard is a drug addict with a heroin habit and crack psychosis. Her desirability as a top London call girl is waning.

When her client dies in a suite at The Lanesborough Hotel, Shelley’s complex double-life is blasted deeper into chaos. In her psychotic state, the skills required to keep up her multiple personas are weakening. Amidst her few friends, and what remains of her broken family, she struggles to maintain her wall of lies.

During this tumultuous time, she is presented with an opportunity to take revenge on a client who raped her and her friends. But in her unbalanced state of mind, can she stop a serial rapist?

 

Soul Destruction: Unforgivable is released 29 April 2013. Available worldwide from all major online retailers in paperback and e-book. Pre-orders are available direct from Caffeine Nights

Further information and contact details:

 Ruth Jacobs’s Amazon author page –

UK: http://www.amazon.co.uk/Ruth-Jacobs/e/B008O

US: http://www.amazon.com/Ruth-Jacobs/e/B008OJ0ZMC

Soul Destruction website: http://soul-destruction.com

Author Website: http://ruthjacobs.co.uk

Ruth Jacobs Bio

 Ruth Jacobs writes a series of novels entitled Soul Destruction, which expose the dark world and the harsh reality of life as a call girl. Her debut novel, Soul Destruction: Unforgivable, is released on 29 April 2013 by Caffeine Nights. Ruth studied prostitution in the late 1990s, which sparked her interest in the subject. She draws on her research and the women she interviewed for inspiration. She also has firsthand experience of many of the topics she writes about such as posttraumatic stress disorder, rape, and drug and alcohol addiction. In addition to her fiction writing, Ruth is also involved in non-fiction for her charity and human rights campaigning work in the areas of anti-sexual exploitation and anti-human trafficking.