So, the story continues… My sweet dear brother, Howie, unfortunately and sadly, had to endure many psychiatric hospitalizations due to either serious suicidal thoughts and / or actions, or, at times, when the depths of his psychosis prevented him from functioning toward the maintenance of his daily hygiene and activities. The longest hospitalization occurred during his late teen / early adulthood years. His functioning had deteriorated significantly. He was responding frequently to internal cues, voices, and any and all interference in his brain on a regular basis. He began to anger quickly and, in general, couldn’t seem to regulate his emotions. He was smoking close to 2 packs of non-filtered cigarettes daily and often chain-smoked. On one awful day, he perceived our father as demonic and chased him violently while grabbing a knife from the kitchen. Thankfully, our father was faster and was able to get to safety. As far as I can remember, that only occurred once, but, for the fear of what could have been, it was once too many.
Within a short period of time later, Howie was formally conserved under the mental health laws of New Jersey as being gravely disabled and was placed at Greystone Memorial State Hospital in Morristown, NJ. Let me be clear from the start – this was then and now is now. But, it was what it was. For all of you who have watched One Flew Over the Cuckoo’s Nest in the ’70s, the film almost perfectly depicted the custodial, sterile care (minus the intensity and drama created). The staff, for the most part, kept their distance from the patients. Psychotropic medications were ordered and dispensed by line staff, but they were nervous, if not scared, at times of the bizarre and often unpredictable behavior of the patients. Alas, the physical distance was maintained between the staff and the patients for decades. There also wasn’t much treatment to speak of nor were the mental health professionals and / or psychiatrists making themselves available. They did not make time to confer with the grieving relatives and / or significant others.
During this period, I remember Howie being understandably upset at times with our parents for being there, especially in the first two years. He couldn’t understand how people who claimed to love him could leave him in a “place like this!”. He also, at the same time, had extremely limited insight into his own feelings, thoughts, and ensuing actions at this phase of his illness’s impact. He was under the throws of a strong mental illness that often won the internal battles that Howie fought so valiantly. He had great difficulties focusing solely on us during our visits. The intrusive voices that he heard in his head are now understood by me as symptoms of his mental illness – auditory hallucinations. But, without knowledge or explanation, we were all left in the dark to guess what we thought was happening to him. Greystone Memorial State Hospital, and psychiatric facilities in general during this time period in our country, provided antiquated care and services, treatment approaches, and psychiatric medications compared to those of the more modern era. However, it was the best they had available and they were not being challenged to deliver anything more. At one tragic point during this hospitalization, my brother received shock treatment to assist him with his Schizophrenia. There was no empirical evidence to show positive results and it was used more so as a form of restraint especially to quiet down the more “vocal and outspoken” of the patients (similar, but not as extreme as, the outcome for Jack Nicholson in One Flew Over the Cuckoo’s Nest. Today, that would be considered abusive. ECT is still used and can be effective with ONLY long-term depression and only after someone has failed on multiple anti-depressants over extended periods. And, in that regard, it is a highly-monitored treatment.
During this era, for one to need ANY psychiatric help seemed to translate directly toward a sense of a weakness, of mental frailty, and an overt failure of will on the part of the person who was stricken with these type of symptoms. They didn’t have enough fortitude of rational thinking, strong character, and / or were just plain weak-minded!! Someone evidently possessing the contrast to these human fallibilities would, therefore, with the previous logic, conclude by this reasoning that they actually have the power to prevent a mental illness from developing in the first place, or trying to take over someone’s life. This was the societal mantra seemingly across all races, ethnicity, and cultures in this country.
The longer that Howie remained at Greystone, the more he began to be called by different nicknames. The most popular (and, remember, his peers were all 15 to 17 years old) was “Crazy Howie”. Over time, amongst the large group of peers we both knew, I became known, by extension, as “Crazy Howie’s Little Brother”. I didn’t like the nicknames for Howie or for me. I like it even less, at this time, as I recognize it for all of it’s insensitivity and rudeness. It reminds me of the greater level of both a pervasive unknowing and a continued heightened level of ignorance which still exists today.
Little by little, over time, our family gradually began to initially experience a subtle and then more blatantly explicit shaming of sorts. We began to not receive invitations to larger family affairs that prior would readily have arrived. It hurt my Mom and Dad tremendously. They knew the reasoning of these friends and relatives was that of worry / fear over Howie’s potentially unpredictable behavior during a formal gathering, which may have cost thousands of dollars. It was just “safer” to not invite us! I was too young to realize the level of stigma and discrimination that was going on. As a family, we began to feel like “lepers” being outcast from the tribe and that this was necessary for the greater good as if Howie was carrying around a deadly transmittable disease. There was an unspoken fear and paranoia going on during these times. Irrational as all this may be, it was an era when relatives whispered that someone they knew had cancer and would only say, in the quietest voice, “Did ya hear, Aunt so-and-so got the ‘c’.”. Somehow, this would decrease the likelihood of transmission by not talking about it too loudly. Someone might catch it!!! This same uninformed and uneducated mentality was tripled when it had to do with a mental illness. Howie and our family had been severely stigmatized, and it left me depressed, angry, anxious, and far from feeling grounded. All we knew was that it hurt, and badly.
Howie was discharged from Greystone in his early 20s. He moved to New York City, and then, eventually, followed a passion which led him to San Francisco. He was a musician, a writer, and a latent hippy. He wanted to put himself in the middle of what he felt was still a creative mecca in the 80s. I moved to San Diego, CA in 1984, and, over time, was able to find and visit with Howie prior to moving up to Northern CA. Once relocated, I would go into San Francisco, and, sadly, find my brother living in squalor in the Tenderloin section of the city between Market and Mission streets. He was not taking his psychiatric medications and was, instead, self-medicating with his SSI funds. This was typical, and he was still taking older medications. The newer psychotropic medications to treat thought disorders and psychosis began to emerge in 1991 with the advent of Clozaril. I used my increasing knowledge in my effort to help Howie. For safety sake, he passed on the Clozaril due to the necessary frequent blood-draws associated. He elected to try Risperdal at one point, but it wasn’t effective for him so he returned to his older familiar medications. It turns out the company was wrong in their thoughts about how many milligrams would be clinically beneficial and he was under-medicated. Eventually, at around the age of 34, he decided to stop self-medicating with alcohol and street drugs. My wife and I helped him get cleaned up for a bit, and, then, he went back to NJ by way of a Greyhound. He lived with our parents for a while, and lo and behold, his name pops up on a Section 8 HUD housing waiting list, which he had been on for 6 years. He had his own apartment, was working at a job just under 20 hours a week, was collecting SSI, and he had gone back to school at Morris County Community College where he was getting A’s and B’s for grades. He was only about 7 credits shy of his Associates Degree with an intent to return to CA and pursue a BA program. He was very proud of himself. He did all of this for him, and not to prove anything to anyone else.
Tragically, my brother took ill at the same site on the top of his head where a shunt had been implanted 20 years earlier to help reduce pressure from his bout with Hydrocephalus. This time, a cyst and a tumor were found at the site. My brother’s health declined rapidly, and he was not able to fight physically any longer. We lost him in 1999 at the age of 40. I’ve already lived 15 years longer than him, and do not take any days on the planet lightly. I carry his story – his struggles and triumphs. And, in telling about his demise, I also carry the bittersweet reality that he pushed himself through so much and still had self-regard and self-respect in the end. He did not have to return to school, or have “larger goals”. Everyone would have understood.However, he was beginning to show us what recovery looked like!!!
Thankfully, today, the knowledge has grown and the ignorance is continually reducing. There are mental health professionals, in many private and public settings, that are taking the time to provide thorough psycho-education to family members and significant others. As an LCSW at Napa State Hospital for 25 years, one of my favorite parts of my job, and given my background it shouldn’t be surprising at all, was to help those who love and are concerned for the person trying to manage a serious mental illness. As they gain knowledge, their compassion and level of insight grows tremendously in sync. The goal is always to treat any illness at the lowest possible level of intervention which will help ameliorate the problem or bring it to a point of effective management. This is true for self-management of an illness, or those that require additional medical and / or psychiatric assistance. Hope should be increasing as more and more people become aware of what a mental illness is and what may both cause it to occur and or flare up. Developing solid, and realistic relapse prevention plans, is critical to living with a mental illness. Sharing it with a few selected, highly-trusted adults, along with professionals, is certainly the ideal. Wishing all positive mental well-being!!!
Your story of your brother and family was so heartfelt. I can see now why you had so much heart and compassionate for all the patients you served. You were such an amazing clinician and the patients you served were so blessed to have you. Thank you for sharing your story. Sending hugs your way!
Thank you so very much for those sweet words. It’s true that my youth guided me clearly into my path for both my own healing and the ability to relate to others in hopefully more meaningful ways and with more respect for the impact to the whole family system. I’d certainly like to believe that I assisted many patients over the years, and from the feedback I received along the way, I had. That means the world to me; and I know that I was working along side of equally dedicated treatment providers who also cared very deeply for their patients and their positive outcomes. This clearly includes you too Alma!! I’m happy to be able to be at a place where I am ready to share this story more publically and hope that it resonates with those who can relate, especially, in that, the treatment and care has so dramatically improved over the past 3-4 decades, and appears that this trend will only continue. Hugs back to you as well my dear. Take care, Marc
Oh Marc, I am so sorry, and what a beautiful tribute to your brave brother. I am so sorry I didn’t know about this when we spent every day together. My daughter suffers from the mental health of self-harming. It was, and is, so painful and terrifying. That little 8th grade girl, thanx to medical and counseling, started her senior year today, where she is the founder and President of the first Mental Health awareness club. She is healthy and happy, yet struggles every day with anxiety, shyness and depression. I love you mark, and will pray for all of you every day.
Thank you for the acknowledgment, and yes, Howie was a very brave person who despite all of the limitations which his illness placed upon him, he didn’t lose his values through religion and boy scouting throughout his life. He sadly sacrificed his own needs for those of others, even when it meant he would go without. I watched it numerous times in his life. I did share about Howie at work but clearly not to this level. I’m sorry to hear that your daughter has struggled as well but so pleased and happy to hear of her willingness to face this with the love and support of her family. Without going in to too much detail, as our son is almost 23 y/o now, but he too, is working on managing symptoms of mental illness while trying to find his path in life. It isn’t ever easy and is certainly a family system matter. So happy to hear about her taking the lead role in the formation of a Mental Health Awareness Club. Ironically, that is a mainstay of what BC2M.org has been doing now since last year. They have a formal program available to be sent to any and all high schools and colleges in the nation to assist them in creating this type of a club. I can’t think of a school in the U.S. which couldn’t benefit from providing this type of a club to ensure that the dialogue will occur….and at such a critical age during which so many dramatic, life-altering events can occur.
With regards to her ongoing anxieities, depression, and emotional discomfort, have you explored any materials based on Dialectical Behavioral Therapy (DBT). Our son and many at NSH have found it very grounding and helpful to manage their emotions much more effectively by challenging the irrationality of the thoughts that drive the mood. There are inexpensive workbooks available on Amazon.com, and other sites. I love you too and always wish you and yours well. I will keep you all in my prayers too. Take care, Marc