Manic Scribbles & Wearing Purple

Posted: September 16, 2018 in Uncategorized

Great insight on a mental health hospitalization!

The Calculating Mind

Below are some manic notes I made. Btw, purple scrubs are what the inpatient psych patients were told to change into upon admittance into the hospital/psych ER.

woman wearing purple hooded jacket sitting on rock Photo by Pete Johnson on Pexels.com

Color: PURPLE

Patient:

I was wondering what purple stood for… I think it means we are “crazy.”

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What does it mean to be the patient in purple [scrubs]? What makes us different?

Why are we treated as dangerous?

As criminals?

Why are we transported by police and handcuffs?

Why are we stripped of our possessions, our clothing, our shoes, our rights?

What does it mean to be ‘crazy’?

Is depressed crazy?

Is anxious crazy?

Is bipolar crazy?

What about suicidal?Psychotic? Obsessive? Traumatized?

Why does a cancer patient get t-shirts, bumper stickers, flowers & support… but a psychiatric patient gets a pink slip, stigma, and a system that [illegible word that…

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Yes!

The Calculating Mind

Since opening up publicly about my own mental health journey, many others have messaged me (some publicly i.e. tweets, others privately) about their own struggles, symptoms, and feelings of isolation. Most of these people are ones which I have never met in real life- the online mental health community is such a cool thing! Others are ones who I’ve met yet barely know. Then, there are ones which I have not contacted in years who I’m surprised to learn even read my blog, much less relate to having poor mental health. I’ve even gained insight into people I’ve been close to for years, such as the “social butterfly” with incredibly well hidden social anxiety. I’ve learned so much… and I hope that I can use that knowledge to help others accept their conditions!

photography of road near foggy mountain Photo by Bogdan R. Anton on Pexels.com

I’ve met people in all stages of their mental health…

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Johnstown Flood 2017

Posted: September 10, 2018 in Uncategorized

Wait, there was another flood of Johnstown PA this year? No, not like their floods of the past. This was a different type of flood, and thankfully I was the only one hurt and it did not cause my death. It was a flood of problems combined with a lack of available help that combined for a personal disaster. Some things were my fault, some not. Some things I should have saw coming, some not. Most everybody in my life thought everything was great and success was certain. It wasn’t. Allow me to explain all that happened, it’s quite a journey.

The start of this particular journey really began in April of 2016. I had been living in the same place for almost 2 years, a big accomplishment for me. Instability has haunted me since childhood, so much so that this was only the 3rd time in my 45 years living at the same residence for more than a year. Problem was my life was pretty boring and unhealthily so. I told my therapist that I was having thoughts that I would be much better off going back to Warren State Hospital, a long term mental hospital where I had been for almost 2 years a few years prior. It was pretty rational in the sense that the structure and available programs they had there were much more than I had in my life ever since discharging from there. Highlights there included constant supervision, many friends, intense therapy, positive very part time employment, and sports to play. All things I had lost since, but not from a total lack of trying. In the almost 2 years at the house I was living in I had searched some to find my niche with no good results happening. I felt out of place because of this. I was very much wanting a better, healthier, and more productive life. It really seemed that going to back to the state hospital was a true improvement, even my therapist saw the rationale. But, I grew to decipher that if I was well enough to see that going there could be good for me I really wasn’t eligible to go back because it exists for people who are not or cannot reason things out. It meant I was also well enough to start building a better life for myself outside a long term mental hospital. Going back there would be retreating and I needed to move forward. Smartly trying new things would be the way to do so. I began to look for opportunities in earnest.

I had heard about the Pennsylvania Office of Vocational Rehabilitation, OVR, a few times but had never sought it out. That was about to change. It took some time and a little extra work to obtain the right application and find the right address of my local OVR office but I got that accomplished. I turned in my completed application in mid-June and then waited to get called for an appointment.

In the meantime an unexpected opportunity came to me. My sister and her husband had been to a church service and observed a musician playing a box drum called a cajon. This sparked them to think that I could add to their very successful music ministry by playing a cajon for them during their performances. I liked the idea and was willing to give it a try. So I bought a cajon and started practicing with them. We began to spend a bunch of time together and grow closer than we’d been. It was really nice. Not great to me, but I appreciated the good in it. I saw myself as an accent at best and wondered if I were a hindrance.

A couple weeks later I received my appointment with OVR and found out I was eligible to go to college for free. Incredible! More than just education, they were offering me a life change. An overhaul. A new beginning on a new path. I could work again! I could come off disability pay from the government and start paying the government taxes instead. It seemed too good to be true, but it was true. It was going to take time for it all to come together but the offer was very real. So exciting! To me at least. My sister and her husband? Not so much.

Upon telling my sister about my appointment I saw her have a hard time being excited about the school opportunity. It confused me because I thought she would be happy at least. As weeks passed the amount of time spent together and musical collaborations dwindled. This also confused me. With new hindsight now almost a year later I can tell you that my decision to seek college was personalized as a slight to her and her husband. Apparently they wanted me to commit to them and even thought had done so. This perceived slight created a rift between us and I lost their support. Support I really needed because she is my only family member that I get to talk to. Unfortunately our relationship would grow worse and worse. This caused me stress and anxiety and just plain hurt. I so did not see things with them happening this way. I mean, how could me going to college for free not be a great thing?

A few months passed and in October my stability at my home took a hit. My roommate had become unstable and compounded that by using alcohol. Over a few weeks it escalated to the point of him damaging my property and making a threat to burn the house down. This went on for weeks before it was resolved by my landlords having him move out. This craziness caused me great stress and anxiety. So much so that in November I started developing chest pain and was having some difficulty breathing.

For a month I was in and out of hospitals. The first 2 to have my heart checked for serious problems. No problems were found and the chest pain got attributed to stress and anxiety. It was now mid-December and I had found out that I was to go to a college in Johnstown for a 2 week long evaluation starting January 3rd. This made me desperate to get better. I so didn’t want to go to Johnstown all stressed out and with chest pain. I decided to check myself into Clarion Psychiatric Center for help. I had been there a few times before and they have really helped me. It was no different this time. A good overhaul of my psych meds, 2 changes and 1 addition, had me feeling much better. I discharged just before Christmas ready for a nice holiday and leaving me with just over a week before the evaluation. Things were better, much better. Anxiety down and chest pain gone.

The evaluation went wonderfully. I was calm and continued to have no chest pain even with the new stress of being tested a lot. What I was able to learn about the college itself was very helpful as well what they learned about me. I tested very well and could have my pick of any of the courses they offered and likely other colleges too. Something I ruled as valuable to me was that this college, The Hiram G. Andrews Center, was made just for people with disabilities. This meant they would not be surprised by my challenges and were built to help. This both calmed me and excited me. I decided on a program they call Medical Office Assistant after I spent a morning in that class and it clicked with me. It would be just under 2 years and I’d have an associate’s degree. They would also provide job placement. Things had become great!

In February at my first psychiatry appointment after leaving Johnstown things got weird. My home psychiatrist was very against me being on the 1 addition to my meds Clarion had made. The med was Ativan which is a strong anti-anxiety pill. Unfortunately, like strong pain pills, Ativan is often misused or abused. Somehow some doctors in Meadville have organized a ban on prescribing Ativan and other similar drugs. My home psychiatrist was a firm believer in this ban. In fact it was very much a hot button issue to her. She was so upset that she told me I had to quit taking it right then and there with no tapering. I was shocked by her stance, but obeyed. In retrospect, this turned out to be a major blow. Both losing the help of that med and going through withdrawal thanks to the sudden stop. And at the next appointment a month later in March she wanted to change 2 more things, which really completely undid all that Clarion did for me. I again obeyed her wishes. Again in retrospect, this was a big mistake.

Not surprisingly in hindsight, March and then all of April saw me really having chest pain again. This time it came with even more physical symptoms like stomach trouble, bathroom trouble, and muscle pain. This time I suspected anxiety but knew my psychiatrist would not give me strong anti-anxiety medication. I was stuck. I decided to pin my hope on getting better treatment at Johnstown, aka go there to get stable. It seemed feasible because I had met the school’s psychiatrist and he was understanding and supportive. I now see that going away to new challenges without being stable first is unwise at best. But I was more than determined to make college work.

Transportation to school became a problem. Thankfully I received help from my county’s mental health program called CHAPS, and I arrived on Friday April 28th. I got permission to be dropped off a day earlier than normal. That first weekend was an anomaly, it was hot outside and hotter inside due to their air conditioning having a problem. Sunday morning I was at the ER dehydrated. I received iv fluids there and felt better. Classes started the next day. That day there was another blow. I learned that the school psychiatrist by school policy was only there to talk to and not to prescribe medicine. Students need to establish their own outpatient psychiatrist while there. This was a big ugh because it could take weeks to get an intake appointment and then get new medicine prescribed. I would stay stressed out and continue to get more stress with no help coming soon. I did my best to persevere anyway.

Not surprisingly, I began to have more serious symptoms. Exactly one week after arriving I was in my 3rd period class when I got the worst chest pain of my life. It scared both my professor and myself. After being taken to the nurse’s station where I received zero compassion from the nurse on duty I was taken by ambulance to the ER and then admitted. It took the hospital 4 days of tests and evaluation to rule out a heart attack and rule me safe enough for discharge. I missed many classes. Then on my 2nd night back at school I woke up with all of my left arm numb and strong nausea. Night staff was compassionate and urged me to have security take me to the ER to get checked out. I was admitted again. This time it took 3 days to rule out a stroke and rule me safe to discharge. More classes missed.  Both of these stays in the hospital would be ruled caused by anxiety and stress. I was falling apart.

I returned to the school Friday May 12th exactly 2 weeks after my arrival there fearing I was in danger of not meeting the school’s strict 90% attendance standard. I was right to fear this because I found out I had missed too many classes to recover especially in light of more doctor’s visits coming that would require more missed classes. My guidance counselor suggested it to be ruled a false start. I was not in trouble per se and could return to school at the start of another trimester. They would give me time to go home and get healthy. I agreed to this. My professors and my dorm counselor agreed as well. I never even got to have a paper graded. So I was now ineligible academically, which meant I was now ineligible to live in their dorm. I needed to come home. And fast. Of note, after having that trimester declared a false start I began hearing that people were concerned about my stability. Unfortunately, they did not speak up until it was over. It was time to get more help for myself.

Getting home was not easy. How I got to Johnstown, through CHAPS, ended up costing me over $120. I barely had a few dollars in my pocket. And my family was not available to help me either. Greyhound would be the most feasible and cheapest way home. I was supposed to receive a check from my payee in the mail that day but it did not come. Having only a few dollars I decided to try to sell some of my more sellable belongings to come up with money for the bus. Thankfully I did by selling a nice Bluetooth speaker, computer speakers, and a computer monitor for below fair value because I had to leave. I accrued $75, which was ironic because that was the amount I was supposed to receive from my payee. Thankfully it was enough to get home. So with the money taken care of it was time to pack. I was taken to Johnstown in a minivan. I used boxes and garbage bags because I had no luggage. Unfortunately for me, Greyhound does not allow boxes or garbage bags, they require luggage of some sort. All I had that could pass for luggage was a smallish backpack. I would have to leave many of my belongings behind, taking only my best stuff that could fit in that backpack. I would be starting over from nearly scratch. Yuck. But it was all I could do, so I did it. At a scheduled layover in Pittsburgh I reached out for psychiatric care but to no avail.

I arrived back in Meadville on Saturday May 13th with no money and no home. I was expecting my sister to take me in for a couple days. She’s provided me emergency help several times in the past, but she did not offer her help. I again tried to get psychiatric treatment and was again turned down. Though I was in a housing and food crisis I was not in a psychiatric crisis. I was forced into calling my friend and asking him to sleep on his couch. He’s not supposed to have visitors so I felt awful asking him but I was downright desperate. With great kindness he allowed me to stay. Sunday morning I was determined to no longer burden my friend and somehow get my sister to help me. I only needed one day because on Monday CHAPS would be open again and they would have support for me. It took some teeth pulling but she finally relented and kept me with her until Monday morning. She dropped me off at CHAPS and it was there that my road to recovery from this Johnstown flood would start.

Later that Monday I was even more convinced that I was in a psychiatric emergency. Clarion Psychiatric center was full and thus not an option. I ended up finding help at a hospital in Erie. I received lots of help there and they setup new and better outpatient care for me too. I was able to have housing when I got back to Meadville thanks to CHAPS opening my old group home back up to me. I have a different bedroom there now, but it’s actually a better room for me and a blessing. I’ve reconnected with my good health providers and I’m establishing the needed new ones. CHAPS is quickly turning into my family now, welcoming me back with open arms and offering great support as well. Thanks to them I am not alone and things are indeed getting better. I have even found a great church to go to! New steps to a needed new recovery.

May seemed like it was a great blessing coming into it, but turned into disaster. A definite flood of sorts, now known to me as The Johnstown Flood 2017. It’s now June 1st as I finish this writing. Things are better and are continuing to get better. No matter what I go through, God is always good and takes great care of me.

 

Public Speaking Engagement #1

Posted: September 10, 2018 in Uncategorized

I’ve been asked to speak to a class of psychology students at the local college here in Meadville. The following is a form of questions they provided for me. My answers won’t surprise some of you and my shock some of you. It’s all truth though. Truth sets free. If you don’t believe that, read at your own risk ☺️

Share Your Story-

Here’s some ideas and thoughts to help guide and structure your recovery story:

* Your Name?
Mark Barkley

* Where you live?
Fairweather Lodge group home in Meadville. Moving to Johnstown to start college April 30th

* Where and how you grew up?
All over. 9 schools & at least that many homes in 3 states before I turned 17

* When did you first experience symptoms of your illness?
Bipolar: Around 14, my father was bipolar as well.
OCD: age 5, not long after having scarlet fever. A link to ocd through the virus that causes scarlet fever has been discovered.

What did it look like?
Bipolar: Mood swings throughout most days that affected my energy as well
OCD: Became so afraid of bowel movements that I forced myself not to go, and also became so afraid of getting shampoo in my eyes while washing my hair that my older sister concocted a way to wash my hair with a washcloth to appease me.

* What was your journey?
How much time do you have lol. 9 schools in all. Missed half of grades 8, 10, and 11, and only attended the first day of 9th grade. Yet somehow I was still allowed to pass to the next grade each of those years. I only graduated because of special program last year and a half. I’ve lived at same address more than 2 years only 3 times in my 45 years. Have had at least 40 jobs (as many as 12 w-2s in one year), multiple jobs for 1 day or less. 50 inpatient mental hospital stays, most brief, a few longer including over a year and a half at Warren State Hospital (WSH) from 2011-2013. Plus an RTFA and an LTSR long term programs. Things started getting better for me in November of 2010 when I got approved for Social Security Disability (SSDI). It’s hard to get help without money and resources and I had been out of work for 2 years at that time, so getting disability benefits were the start of my “recovery” (I put recovery in quotes because I have more than recovered. I’ve also uncovered and discovered. All 3 were necessary for me). After getting the SSDI benefits I became able to persist and persist until I found true treatment. That started for real at WSH and progressed a lot in my time there. Of note, and as an example of things sometimes get worse before they get better, I had my only suicide attempt while I was there. That attempt turned into a lot of growth. After discharging from WSH I took some steps backward including a failed move to Texas. Since returning to PA my “recovery” has progressed and progressed to my present stability.

* The ups and downs? Ups: Good grades at school when I went, graduating, holding same job for over 2 years once, getting promoted to management, happily married(briefly), being a father(briefly), same residence over 2 and a half years(my current), numerous nice possessions acquired, nearing 6 years now of correct diagnosis and proper treatment, stability gained. Downs: The opposite. Missing lots of school, failing each job in the end, felony theft by taking money from my employer to pay bills, each marriage ending(4), 3 children- 2 adopted long ago, the 3rd  I haven’t had contact in 6 years. Many broken housing agreements including being homeless briefly, losing all my possessions multiple times, decades being undiagnosed or misdiagnosed, losing stability in multiple or every way over and over.

* How do you manage your illness/symptoms? Education, communication, correct diagnosis, proper treatment- including medication, psychotherapy, payee, trusted confidants. All include trials and errors on way to success and in maintaining success.

* What helps you to stay well? All the above with a whole lot of God in the center.

* What are you doing now? About to start college for the first time. That’s real fruit of my labors to get healthy and gain stability the past 6 years.

* What advice do you have for your audience? Speak up. Know it’s not enough to just communicate, you have to communicate effectively. Learn. Be yourself, but be your best self when possible always treating yourself with mercy and kindness when needed. Love yourself the way you do your dearest friend or family member or the way they love you, whichever is greater. Fight, surrender, or just stay still, using what you’ve learned to decipher what’s best. And don’t take it too seriously, it’s just life J

 

World Suicide Prevention Day – Monday 10th September. Suicide holds a lot of stigma. People don’t like talking about it. I talk here about the feelings that go behind suicide and my own personal experiences in the aim of suicide awareness. A simple message can save a life. I am proof of this. Talk. Reach […]

via World Suicide Prevention Day – Understanding Suicide. — Mental Health Awareness Campaigner and Advocate Blogger

Quote  —  Posted: September 10, 2018 in Uncategorized

About 8 years ago my sister asked me if I thought I was addicted to anything. She was trying to help me get into a facility focused on mental health and addiction. I gave it some thought and told her, “If anything I’m addicted to chaos”. I knew that sounded weird, but my life had been chaotic since I was little. And since chaos was so often around I must be addicted to it. Somewhat surprisingly to me both she and the facility accepted my theory. I started treatment the next week. 
 I was 36 at that time and had already been through 3 marriages, at least 20 jobs, and 15 moves. I knew I had so many problems and tried very hard to correct them but I couldn’t. At least not consistently. Thus chaos was all around me. 

Since chaos was all around me I must be addicted to it, right? I thought so then and continued to do so for years. But I didn’t want chaos. Didn’t enjoy it, didn’t crave it, didn’t need it. It gave me no high or satisfaction. So I started to look deeper and saw that chaos really wasn’t my addiction. It was a consequence. A consequence of wanting to feel better. From wanting to feel better? Really? Yes and yes. Unusual for sure, but true. 

I was desperate to feel better and had been for a long time. Things around me had been yucky since I was little and kept getting more yucky. My mom had an anxiety disorder and my dad was bipolar. Neither was diagnosed and had no treatment. That caused real problems for us. On top of their issues I was a mess inside. A mess that kept getting worse and worse causing even more problems. I was suffering from undiagnosed mental illness too. I longed for us to have good health instead of illness, steadiness instead of instability, and unity instead of being alone and out of place. Most of all I desperately wanted to feel better. 

All that wanting to feel better would bring chaos. I would do things that were unwise- overspending money, immoral- messing up marriage and being a father, and even illegal- felony theft. All fueled by my desperation to feel better. As weird as it sounds, wanting to feel better brought chaos. Truly it did. Ask anyone involved in my past and they’d tell you. 

I’m sharing my experience hoping to enlighten and encourage. To enlighten you to see how a person with chaos always around them does not mean they’re addicted to it. And I’m encouraging anyone surrounded by chaos to seek true help. I’m also encouraging anyone who sees another in chaos to try to help in some way. It was my seeking and finding help that things have gotten much less chaotic. Together we can make things better. 

  

Hello, my name is Mark. My life has led me to have a lot of experience in trying to get help for my psychiatric issues. I write this to share some of my story hoping it might increase awareness and maybe even help someone.

I’ve had struggles with mental illness since I young. Up until about 7 years ago I was able to be resilient and keep things patched together enough to get through. That all stopped then. I went into a serious breakdown and lost almost everything. I was desperate for help. Desperate for change.

A couple months later I started having overbearing thoughts of suicide and was hospitalized. I would go on to be hospitalized around 15 times the next 2 years. Antidepressants, anti-anxiety drugs, anti-psychotics, and mood stabilizers were tried. If any did good at all it was short-lived. Diagnoses of bipolar, borderline personality disorder, and anxiety disorders were given but none stuck. I saw multiple therapists with differing opinions on what I needed, but none had an answer.

As you might imagine, all this trying and failing grew very frustrating for me. But it was also frustrating for the hospitals and outpatient treatment facilities. I would be accused of faking and heard “there’s nothing wrong with you”. I was told that I was making my own messes and just needed to try harder. Told that I wasn’t really suicidal because I had never attempted suicide. This experience seemed to prove what I had thought and felt for a long time: That there was no help for me and the world would be better off without me. The keywords there are thought and felt. More on thoughts and feelings to come. I was still desperate for help. Desperate for change. Even more so than before.

Though tormented by my own thoughts and feelings that told me to die, I was able to conclude that I was not ready to give up on life yet. I wanted to keep trying, but I also knew I needed to try differently. I identified that there was something that was in my power to change. I began to see that it was, and still is, very hard for me to express negative thoughts and feelings. I wasn’t able to outwardly convey the mess I was inside, and I felt that could be why I was so misunderstood and thus mistreated. I thought if I could learn to express myself better that it might change the treatment and maybe the diagnosis I get. That the cycle of reaching for help then not getting any then reaching again for help and still not getting any could be broken.

Mostly because I hadn’t yet found good treatment, I had spent 6 months out of a hospital. And in those months I had made a really big mess. Lost everything again. It was time to put changes in how I communicate into practice and be hospitalized again. I was able to choose to go to a hospital that had always been good to me. There I felt safe enough to really try to open up and give details of what was going on inside of me. My effort rewarded me with being taken seriously. I got understanding and empathy from the staff there. They went out of their way to help improve my self-esteem. My psychiatrist there however did not connect with me, but that led to good too. For the first time I had found someone who agreed that I needed long term treatment. They would send me to Warren State Hospital to continue and further my treatment.

Within two hours of meeting him my psychiatrist there gave me a diagnosis that I had not even heard whispered for me before: I have Obsessive-compulsive Disorder. And he was so right. Mine is an untypical case. Along with it I also have fairly untypical Bipolar disorder. I would go on to spend nearly 2 years at Warren. In that time my psychiatric diagnoses were proven true and truly treated with proper medication. I also received long term and high level therapy from a doctor of psychology there. My life has been far more stable and beneficial since I decided to not give up on life but to seek treatment in a different and better way.

I want to tell you to not give up on what is good, and to stop banging your head against that which is not working. It’s very hard to get good treatment without a true diagnosis. And it’s hard to get anything good and lasting if you’re not able to express yourself. My experience, and thus this essay, echo these points.