CROOKED ROADS: “I prayed, scared of the future, for the future.” Glenn Slaby’s Account Of Dealing With A Serious Mental Illness

Photo courtesy of Treatment Advocacy Center

(9-21-21) This is the second two of  Glenn Slaby’s account (part one here) of his years seeking help for the symptoms of his mental illness, the toil it has taken, the love of those who have stuck with him, and his ongoing mission to help others. As always, the views expressed in this guest post are those of the author.

CROOKED ROADS: Part Two 

By Glenn Slaby

Diagnosis: Obsessive Compulsive Disorder (OCD) and anxiety and some depression (the new meds eliminated this). Being discharged meant continuation of the same continuous dread, uncertainty. OCD can be a complex behavior, not just commonly referenced with fear of germs and diseases, but continual overthinking, with huge waves a doubts about everything and anything, even creating a lack of trust in those nearest. A blemish, a mark, a mole, cancer? Why is she late from work? The boss needs to see you? A friend hasn’t called? Did I prepare dinner properly? The barbecue, is everything cooked?  The gas, is it on, did I lock the door? did I….

The correct diagnosis did not place life on auto-correct, resuming its original path.

My brain needed to be retaught, confidence re-built, accepting the loss path, finding a new road – searching for a purpose, becoming a better husband, father. I had to accept limits, search for new capabilities, abilities, goals. And I prayed, scared of the future, for the future. Looking back, I see the slow daily progress, recovery and pain.

 After discharge, the Partial Program, five days a week in an outpatient. And I did sleep. But the fear continued. Home coming isn’t a relief. Discharge brought fear due to prior experiences, on a path, removed from a ‘sanctuary’ facing a world disjointed, noisy, seemingly uncaring. Nights brought fear, insecurity. I slept on the couch, away from wife and son – not knowing what night’s terrors will arise. Days brought daily chores, prayer, clock watching and waiting for the next crash, but also wondering, hoping. A slow return to some normalcy. Home brought what others, too many, do not have – stability, family, church, friends.

The next stage, the Continuing Day Treatment (CDT), a friendly atmosphere, caring professionals, etc. and decision, to avoid the final choice and face the unknown future, a new reality. They succeeded, I succeeded. I remember their names.

With stability through these various therapeutic programs, the body adjusted to new routines. The mind had somewhat adjusted to future’s mystery. My spirit, faith and soul’s confidence returned. A deeper faith was sought, to grow, dig deeper and find the Testament’s hidden treasures. Months passed, fears were accepted, lessened, slowly, stubbornly.. Confidence grew. Sounds simples. It wasn’t, still isn’t. Slips occurred, but trust grew. The old adage “Time will tell” proved as correct as the diagnosis. A painful passage of time. The pain of therapy. A passage of healing never complete.

Healing isn’t a cure in the general sense. The brain, the mind are not similar, but both fragile, complex, influenced in a myriad of prompts, emotions. Each step, a “mental boot camp” of challenges, pain, sometimes agony – changing, ‘reprograming’ the self. And the brain, creation’s most complex gift, is far from understood.

None of this was my, fault. It was just what it was. I had to accept.

(I wonder if hospitals, anyone, maintain data on discharge statistics, such as rate of medicinal adjustments, rate of readmissions, diagnosis, diagnostic changes, etc.?  I doubt it.)

 Trauma exposed.

After CDT, individual out-patient therapy discovered conditions relating to Attention Deficit hyper-activity Disorder (ADHD) and Post Traumatic Stress Disorder (PTSD) – layers like an onion, slowly uncomfortably peeled, away. A different type of pain. Has the center been reached? Is there a center besides the soul?

The causes – genetic (family history with drinking and suicide), trauma and social upbringing. I had, have all three – like so many. There’s no one to blame. It’s there, it happened. Move on, slowly, with difficulty and pain, working through distress.

I am lucky.

Through hell stood my wife, family, beloved friends and my priest. No one gave a damn about the stigma. Everyone gave a damn about my well-being and fighting the system.

I am in the minority.

My PTSD, from a medical procedure when in kindergarten. Trauma, affecting me through life in too many aspects. A switch is turned, volts of electricity spark through the brain. It’s like standing on the Great Plains in the middle of a lightning storm with no place to hide.

Waiting, picking up, absorbing family’s fear, dread, anxieties. A child’s mind, sitting in a waiting room, in fear of what awaits. None of this would have happened, affecting everything. Was it days, hours? I should have hid all that blood better. I have no recall, how I got there, the passage of time, – just sitting in the waiting room. How long was it? What will happen, behind the door?  He says, pull down your… This won’t hurt.  It did, I screamed.

I hope to reach, “The concern of the flesh is death, but the concern of the flesh and spirit is life and piece.” Romans 8, 6

For an issue that may have gone away on its own.

How can one wait? Days of thoughts compounded by mind’s other defects. Awaiting the results, day after day. Making the appointment, waiting for the day. Sitting in the waiting room.  The unknown, behind then door.  Then specialist after specialist, appointment after appointment, probing, the next visit, the next doctor, next test, invasive or not, it doesn’t matter.  There also have been too many tests, too many false positives. The last suggestion of a non-invasive exam was more than the mind could handle. I was one phone call away from the final choice. Doesn’t anyone understand mind’s limits? I feel it in others who don’t suffer. I see it many, the ones I love. I’m torn apart. How does one live? Can I let go, Let God? What can the mind withstand?

So I live in the moment’s freedom and uncertainty, like all too some extent, along with the emotional pain I cause in others.

However, with a deeper faith. Letting go, with trust, daily, seeing what others may not see, the value of a day, a friend the limits of life, the greatness of gratitude, of faith, of what is promised by The “I Am.” I try.

Can’t wait till I finish this article, so I can escape from this inner-self and enjoy moments of life.

Group therapy, coinciding with individual therapy worked, learning skills, learning especially what worked for another would not work for me. I learned, skills for OCD may not be applicable for PTSD. ADHD, anxiety. And trying when to use a particular skill for which issue, problem.

Every therapist has different styles, methods, techniques. With two very good therapists one proceeding the other, they focused different methods for growth. Success has been difficult, learning to switch. I have learned from both. But…when, not if, this current therapist leaves.

The ADHD, the mind distracted, more creative, seeing what others don’t, more misunderstandings, difficulty reading, not learning like others, inability to slow down. There’s my hurried speech pattern, moments of teeth grinding and jaw clenching. The inability to focus as well as others, on others and understanding what others discern so well.  To be still and know, the mind fighting itself. Even in Church, through the Gospel, homily, the Consecration.

I mustn’t leave the kitchen when cooking. I forget my tea sitting, getting cold. Its midnight, the mind is finally silent of all internal noises. Its 1:00am, already? Finally at peace and need go frustratingly, needing to bed.  Projects started, not completed, thoughts the same, except when I am writing, doing jigsaw puzzles. Websites, their graphics, the formats, the overwhelming colors, understood with great difficulty.

Only on the pain of the trauma, does the mind focus.

My cross. I long for fleeting times of enjoyment of doing, when I finish this article.

ADHD, anxiety, trauma, OCD compounds life, feeding off each. Even in sleep. The dreams, clear, vivid, sometimes uncomfortable. Images of being attacked, fighting off the past, swinging nearly hitting my wife, and twice did. Fortunately rare, but still…   At least, in my teenage years, fear created by my OCD kept me away from alcohol and drugs. The self-medication, so prevalent, for millions, so misunderstood. There’s the internal, the questioning, the secondary thoughts, the doubts of what to do, say, think. Every moment, awake.  Every action questioned. And the pain I cause others, those closest. So I live, trying to help, be more than what I lost.

Obstacles from society.

The stigma, insurance coverage, drug costs, lack of parity – so much to be done. We are still here – despite what roadblocks are thrown in our way. Social Security disability, SSI for others, programs, for many, what many ignorantly call welfare. Some tell you, why you can’t change, just change. We should tell them, try writing, and do everything, with your other hand.

I am lucky. An education and a prior career, (former accountant, an MBA in Management). This illness bringing an end to old dreams, careers,  brought something greater.  Now, a new purpose. An MFA in Creative Writing and working at the second psychiatric hospital serving, contributing. Resulting from love, kindness and skills of many. I’m the minority. Too many suffering from a disease that is NOT of their making.

“All We Have to Decide is What To Do With the Time That is Given Us” Lord of the Rings. Tolkien

What was the meaning? Did I create my own meaning through faith? The Lord brought me through dark times. Future’s path still scary, at times.

We all have our own horror stories.

“It is not our part to master all the tides of the world, but to do what is in us for the succor of those years wherein we are set, uprooting the evil in the fields that we know, so that those who live after may have clean earth to till. What weather they shall have is not ours to rule.” Lord of the Rings. Tolkien

ABOUT THE AUTHOR: Glenn Slaby has been married, to the immense patience and credit of his wife, for 31 years now. He currently works at St. Vincent’s Hospital, which has so well served him. Recently passing all the required tests to become a Peer Specialists, he can now work even more closely with others suffering from mental illness. Today he writes monthly for the online publication, The Catholic Stand and periodically for Spotlight on Recovery and seeks other outlets. Weekly therapy continues at the above hospital as does Spiritual Direction on monthly basis through a Salesian Brother. His website displaying earlier articles is www.glennslaby.com.

CROOKED ROADS: Glenn Slaby’s Poignant Essay About Life With A Serious Mental Illness

Photo courtesy of Treatment Advocacy Center

(9-20-21) Today I welcome a guest blog by Glenn Slaby, who describes in this powerful essay, his life living with a serious mental illness. As always, the views expressed are solely those of the writer.

CROOKED ROADS : Part One

By Glenn Slaby

Sometimes, I just can’t believe I have mental illnesses. Four, the latest count. Some genetic, some from life. I accept, not as a degradation, but a cross. Our culture sometimes does not accept this type of cross. My mind is so different in the way I think, perceive, feel and act, like in a box. This is my life, making it purpose from a burden, a trial to be borne to help others. I am different and wonder, should I care if my inflictions are visible.

Thirty-five years mind different. Then, twelve years misdiagnosed. Twenty learning, struggling, developing into something new. How many acts, decisions made within this frame? How many the right choices? What of the long-term effects of being misdiagnosed for so long? The difficulty of being a husband, father when the brain doesn’t work when it should.  Why?  I’m still one of the lucky ones. 

I hope, believe, “I consider that the sufferings of this present time are as noting compared with the glory to be revealed for us.” Romans 8, 18*

“Sorry there is nothing we can do for you.” The doctor and therapist, their words seemed so easily spoken. Did they understand the pain inflicted with those words?  And a knife went through my heart, my wife’s.

We stared, dumbstruck. Third in-patient stay in as many months. Unbeknownst, two more to come. Seems a long time ago, yet freshly lies on the surface of mind’s memory, Scars mostly healed – the discernible ones.  Diagnosis, treatment, how different today than in ’04, hopefully. Twelve years prior, the year of my son’s birth, some attributes led to the incorrect bi-polar disorder conclusion. I wonder, ask why?

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Andrew Sperling, Long-time NAMI Legislative Advocate Resigns To Join Novel Drug Firm

(9-16-21) Andrew Sperling, the National Alliance on Mental Illnesses‘ long-time director of Legislative and Policy Advocacy, has resigned and accepted a new lobbyist job with Intra-Cellular Therapies, a biopharmaceutical company founded in 2002.

Sperling has been NAMI’s Capitol Hill advocate for 25 years and is well-known and respected in congressional circles. During his tenure overseeing NAMI’s federal policy agenda in Congress and before federal agencies, he worked on passage of the historical Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act of 2008, and played a key role in getting Congress to approve the Frank Melville  Supportive Housing Investment Act. Those two major laws helped individuals with mental illnesses receive equable insurance treatment and assisted housing.

“I love NAMI and leaving was not an easy decision, but this was a once in a lifetime opportunity for me to join an exciting company that is focused almost entirely on developing novel medications designed to help people with mental illnesses,” Sperling told me. Click to continue…

Mike Was 14 When Committed To State Hospital In 1957. In New Book, His Younger Brother Searches For Answers.

Colorado Insane Asylum – State Hospital

(9-14-21) In 1957, a fourteen year old boy named Mike Trimble was committed to the Colorado State Hospital in Pueblo after sequential diagnoses of “retardation, schizophrenia and epilepsy.” Mike’s brother, Stephen, was only four years old. Ten years later, Mike was mainstreamed back to Denver but didn’t want anything to do with his family.

In a new nonfiction book, The Mike File: A Story of Grief and Hope, younger brother Stephen, searches for answers about what happened to his older brother.

My interest in Stephen Trimble’s book was piqued, in part, because as a teenager I spent a week at the Pueblo asylum. It was during the summer of 1969 and I was a  volunteer there through my church. I mowed lawns and cut hedges in the morning and in the afternoon tagged along with a psychiatrist on his daily rounds. This was years before HIPAA and no one hesitated at having a naive teenager roaming the wards asking questions.

The hospital was in the midst of sending patients home as part of the coming national deinstitutionalization movement. In 1961, the hospital had hit a high of 6,100 patients. I spent my week observing two patients. The first was a woman who had been committed at her husband’s request. She had fought with him and seduced their teenage son to punish his father. The second patient was a young man – Chris – who’d been dropped off at the hospital as a toddler and grown up inside the asylum. By the time of my visit, doctors were convinced that the then forty-year old had never had a mental disorder. He’d been an unwanted child who was simply dumped at the doorstep. He had symptoms of Tardive dyskinesia even though records showed that he had not been heavily medicated and he acted as if he were sick because other patients had served as his role model. It was a horrific situation, which only became sadder when he was discharged to a nursing home. I heard later that Chris had died three years after I encountered him.

Although I was at the hospital only a week, my visit there left a lasting impression and vivid memories. I am glad that Stephen Trimble decided to investigate his brother’s life during this period in our history. And am grateful that he decided to share an excerpt.

The Mike File: A Story of Grief and Hope (an excerpt) 

By Stephen Trimble

You step from your car, distracted, headed for an appointment. A homeless man approaches. Bearded, unkempt, wild-eyed. You know you should be empathetic, but he comes too close. No sense of boundaries, no filters, jumpy in his movements. You pull back, you stiffen, on alert, expecting a request for a handout or a disorganized rant about lurking CIA operatives.

You feel guilty, but you don’t want to get drawn into messiness. You nod, you smile tightly. You look away. You move on.

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Lisa Dailey Named Executive Director Of Treatment Advocacy Center, New Challenges

Lisa Dailey takes charge of TAC

(9-10-21) I was delighted to learn this week that Lisa Dailey has been chosen as the Treatment Advocacy Center’s new executive director. I’ve worked with Lisa on criminal justice matters and have been impressed with her knowledge and concern for individuals with severe mental illnesses who are languishing in jails and prisons. TAC initially was founded to push for passage of Assisted Outpatient Treatment laws, but has expanded through the years, fighting the IMD Exclusion and calling for more treatment beds. Unlike the National Alliance on Mental Illness and Mental Health America, it does not accept funding from major pharmaceutical groups.

Here is the organization’s press release.

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Slowing The Pace After 1,382 Blogs – Nearly All About Mental Illness

 

(8-30-21) Having supported the National Alliance On Mental Illness for years, I wasn’t surprised when a solicitation letter arrived in my mail box.

But I was when I opened it.

The well-written request asked if I would consider putting NAMI in my Last Will and Testament.

Welcome to turning 70 years old!

When my mother was 93, she looked in the mirror one morning and wondered who that old lady was. I understand her words better now as I enter my seventh decade. I continue to feel as if I can do the sort of physical activities I did when I was in my 30s and competing in marathons and triathlons. Now, instead of going for a five mile run in the mornings, I sit in a hot tub trying to loosen up.

Which brings me to my point. For the past 14 years, I have posted at least one blog, often two, here each week. At last count, 1,382 blogs.

While I have no plans to stop, I am going to allow myself the luxury of posting sporadically in the future.  I find the birth of a third granddaughter and the pending birth of my first grandson calling me away from my computer more often these days.

My passion and advocacy hasn’t diminished, but like my former running days, I’ve decided to slow my pace.

Talk to you soon – but not weekly!