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?
The System Fails
Certain ‘qualities’ were always a part of family history, sometimes tolerated, accepted, whispered. Some secreted or lost through time. I first began seeing a therapist in 1992. Due to insurance regulations at the time, sessions were limited, sometimes, one every two weeks. I wonder, if insurance companies cared less for profit maximization, if politicians cared more for the individual, an incorrect diagnosis avoided? The trail of errors, tears, pain could have been avoided. The first twelve years of my son’s life.
(I remembered, the failure then, of own government and the struggles of two of their own senators, in passing a mental health parity law. Both had family members with mental health issues. Ideas, pleadings fell on deaf ears. Finally, ten years later, (greed or cowardice) an incomplete, limited bill passed – The Mental Health Parity Act of 1996. More discussions, then the bill known as The Paul Wellstone and Pete Domenici Mental Health and Addiction Equity Act of 2008. The next decade, the ACA, filling in more loopholes. Too late for too many, upholding my belief our medical system is broken and our government. How few really care, mostly interested in possessing power, retaining it, gaining more – above the priorities of our religious, moral and spiritual convictions. I’m not proud of my cynicism, for there’s a loss of hope.)
Without progress through lithium (for bipolar), the cycle began, more doctors, drugs, therapists, different therapeutic methods, different drugs – a procession no one questioned. I can barely remember those days – consciously, who wants to remember hell?
Over a decade, meds on top of meds, appointment after appointment, the strain pulling our family apart. How can one be a husband, a father? A blur now, subconsciously intentional? Through all this, losing a job, getting another, each over 5 years employment. Then, September 11th, the attack, another job loss. I was a few blocks away; the non-profit whom employed me, had an understandable decrease in contributions as monetary support went to this national crisis. Another layoff. More stress, fears, interviews and no job offers. All part of the downward slope, approaching oblivion.
The mind, continuously influenced, bombarded by the world’s noise, enveloped me.
Doctors, therapists need observations over time, sifting through all our culture impounds upon the individual. I was just another patient seen for 15 minutes. One doctor said I couldn’t have ADHD because I was sitting reading a book. (Proven incorrect about ten years later.) Imagine if it was a bad day – another incorrect diagnosis? And I asked why.
Therapist, try finding a good match, getting an appointment within a decent time period, getting quality insurance coverage and holding on through weeks, months, of evaluation. I was lucky.
Psyche meds. You don’t know if they’ll work, how well, when and in what combinations, until you try – over a period of time. The dosage must begin minimally, increased over weeks or months. Depending on the degree of results, (if any), another, medication may be added, slowly. Time passes, waiting. Sometimes the only way to clarify a diagnosis is a successful response to the drugs. If no change, or an adverse effect, the cycle begins, again. In between, you have to live – somehow. How many doctors and medications? I have no recollection. No one questioned. Over time I was emotionless, in a trancelike state. The true self, slowly being buried. I was too pleasantly numb to ask why. Only one doctor looked into my complete personal history.
How can one be a husband, father?
This uncontrollable journey, years of repeated misdiagnosis, eventually led to a collapse. The initial crash, began just prior our son’s first middle-school production in the spring of ‘04. My mind was overwhelmed with dreamlike images. The present a haze; the world surreal. An aunt stayed with our son and soon we were on another unknown journey. What did this child feel?
The hospital unit, just what one imagined – sterile. Voices in hushed tones. Walls monotone. At least, the absence of that hospital disinfectant smell. And I remember the look on the patients’ faces, absentmindedness, disconnection. Turning to my wife of 14 years, “I don’t belong here. I’m not like that.” Reality struck, “Yes, Glenn you really are.” My future was no longer mine. It belonged to unknown doctors, nurses and technicians. True fear and loneliness. Why? The comforts, the invisible shields we all carry disappeared. Mentally, emotionally exposed, unprotected. I, we prayed,
There’s no recall on length of stay or discharged. Next, a day treatment program – over-medicated, mostly asleep.
Trail of errors continue, other memories. More mistakes. Almost a mistake.
Hands trembled, writing nearly impossible, drooling, my internal clock totally reversed. I was warming up milk in the middle of the night, hoping for sleep which arrived only during rides to and from the clinic or in sessions. Did anyone notice, inquire? I was effectively useless to my family – absent, emotionally, physically. No future, compounded by constants thoughts of fear – uncontrolled anxiety not helped by the drugs. For example, there was the anxiety attack, while serving at Mass, (I’m a Eucharistic Minister). My entire body shook, trembled, forcing me to leave in the middle of giving the Scared Sacrament.
Once, after discharge, a doctor neglected to renew a controlled substance, creating a cascading withdrawal. Hours blanked out of my life. Went to church, had conversations, recalled nothing. Slowly coming around, the world seemed unreal, the brain, the mind out of sync with reality. Was I cascading, descending into a nightmare’s twilight leading to thoughts of permanent mental incompetence? Appointments wasted. Of the family’s internal thoughts, pain, bewilderment, I could not guess. Then, the time the hospital’s aged psychiatrist asked my name – as I was leaving the appointment! And try remembering instructions, reading notes, following suggestions when over medicated. Complaints went unresolved – I was a mental patient, one of many. Why? I asked. And prayed. Again. (Damn, I hate writing about this, bringing up ‘sewage’. Who wants to recall walking through an inferno of nightmares?)
“For better or worse.” Those words must have reverberated in my wife’s mind so many times as she bore the brunt of my mental health illnesses.
Was it the second or the third stay, who knows, when, the case manager, doctor and therapist discussed ECT for depression. That scared the hell out of me and I prayed, pleaded to God. I felt alive inside. There were no feelings of overshadowing darkness and dread. I just was incapable of expressing emotions, I was paralyzed by their drugs. My prayers heard, they were without unanimous agreement. They, any of them follow-up and see how the patient fared afterward in life? Once out of sight, did they care? Were their same mistakes repeated on others?
No one asked about my dreams, desires, my goals. Could I have answered? Did they know what their drugs were doing to me? Zonked out, sleeping, discounted. Did anyone notice? Why? Then, the time I was transferred to a senior ward at the advanced age of forty-six. (My wife gave them bloody-hell.) Then, the time my young son was afraid of approaching the hospital building, so I could see him from the window. The heart’s agony.
The end of the third stay, “Nothing we could do for you,” we were out of the system, on our own, lost, discarded, facing the world with mind unbalanced, helpless, traumatized, inflicted with something we didn’t understand. Why?
I was still one of the lucky ones: wife, home, extended family, friends.
That fourth month (the fourth crash) we went to a different hospital. I have no memory of what instigated this fall. Mostly, I remember intentionally scrapping my hand against the metal grate over the prison-like window, drawing blood – from anger, hate and pain without reason nor logic. The only hope, a nurse comforting me. Who was she? Again, no one, seemingly questioned the original diagnosis. One with bipolar disorder may show signs of dramatic highs and lows, excesses, job turnovers, and poor relationships. I did not.
Again, nothing changed. I don’t even remember being discharged – names, faces – blurs of memories passing like images of disassociated dreams. A week, ten days later, home. Again, one morning, my wife saw something wrong. What was it? Month number five, the fifth stay and assigned a doctor challenging me and the diagnosis. Why he and not others? What did he see others missed? Was this an aberration from all prior mistakes, or a coincidence? Things happen for a reason, I still believe.
There were conflicts, complaints. We fought consistently. No light shined showing this was the beginning of a turning point. I’m eternally grateful.
Do doctors, medical professionals communicate, follow through about prior patients, when new medications and new diagnosis achieve positive results? To do no ‘harm’ toward the next patient. Do they communicate or does ego prevent one from listening? Do they even have the time?
End of Part One: Tomorrow, Glen continues telling his story.
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.
About the author:
