I remained protective I suppose of my father. All too often it was used against me. It has been said because I was the youngest, I was the most affected. I would say it affected all of After being diagnosed, I saw a man fighting like hell – for the rest of his life - for his life. I mostly saw a man struggling to regain his previously hard won credibility after having been given an officially and certifiable “crazy” label. A man of many degrees and accolades that had all been stripped away overnight by one word that came to define him.
I needed only to put myself in his shoes for a second to understand the justification for his anger, even rage. Who were these people who had the “authority” to tell him what and who he was? After all, he was a doctor, let’s not forget, with multiple degrees that now meant nothing. But he understood the limitations of medicine. I saw what it did to his pride and sense of belonging. And I saw what it did to my family - and to all of us as children and former wife who were now also potentially guilty by association.
After all, we’d been told by the doctors of the potential “genetic implications”. My eldest brother was lucky enough to escape by being old enough to leave home before the shit really hit the fan. The rest of us just imploded, nearly eating each other alive or deteriorating mostly from externalizing or internalizing the exorbitant shame. And our monetary status dwindled down to living off of my mother’s income alone as a public health nurse. We went from living in a three story house to what we used to call the “shack” down the street. In the long run, it devastated us as a family financially - all of us including my father and his career.
But we knew how to put on a good front - always good at first impressions.To this day I have to believe there was something good at the core of my family – yes, love. But psychopharmacology and it’s “biomedical industrial complex” as authors Cohen and Gomory call it made sure to obliterate it.
My father went in and out of hospitalizations from the time he was diagnosed. He went on and off drugs, that “worked” and then didn’t, even a bout of homelessness on the streets. It was, as some have put it, like “waking up into your worst nightmare only to find it had become your life”.
And all the while, you were supposed to just go with it, definitely not talk about it, swallow what the doctors said, despite your own internal reservations and questions, pretend it wasn’t happening - talk yourself into solutions that never seemed to make sense, and treatments that seemed to do more harm than good – and ones that seemed to steal his soul. Mostly because they were always presented as the lesser of two evils, a crazy seemingly out of control father or a medicated one with “potential” negative side effects.
I will never forget visiting him in the hospital and he wanted to get out so badly. He was wound up about being in there and hated it. He pled with me to help him get out. And I could nothing to help him. In frustration, he laid down on the bed falling back in resignation. I looked over at him to discover, he’d gone blank. His eyes suddenly empty. There was no one in there at that moment. I tried to talk to him, reach him. His eyes fully open but he just simply went away. To where, I have no idea, but anywhere was better than As the children of a divorce, we were also left to deal with it ourselves, no extra parental support from my mother. Not to say she didn’t help because she tried too. And even as a divorcee she couldn’t escape the stress it vicariously put on her through us. And it had clearly exhausted my mother who did her own best to survive it, fighting off her own trauma which I think only worsened things for her. And in many ways – made her own demons grow.
It was a battle too big for us to fight - A force and system too great to penetrate.
The scapegoating that ensued robbed everyone of their best and greatest potential. It just enabled everyone to get sicker, offering us no way out but deeper into solutions that didn’t work and only ever worsened problems.
My only advice to anyone considering entering this system. Don’t do it. Run as far and fast as you can and do anything and everything but IT. IT, the biomedical industrial complex is a well-oiled very profitable recipe for disaster. Where your pain will only become a resource for endless profit.
But that’s what this biomedical industrial complex is founded upon, exploitation of the vulnerable, scapegoating and gaslighting where they blame the victims, from the “patients” to even their loving families who often get demonized in the process. And definitely shut out.
Despite things never entirely adding up to their proclaimed “diagnosis” in an absolutely undoubtable manner, we and he complied, or at least attempted to do our best. He remained a loving and devoted father and yes flawed like the rest of us with meanderings that some wouldn’t approve of, not even me. But many things he thought or did just seemed to be bad decisions made by a father going through a hard time – and yes there were others brought on by what seemed to be the so called “illness”.
Now I know better - what it was really all about - but that comes in the latter part of this story. But initially what got him into the system in my mind, was no worse than the rest of us - making stupid decisions - he was just more honest about it all. Looking back I have to wonder if it was his honesty above all that got him in trouble.
I remember him talking about the need for it and just how important it was and how fed up he was with all the lies. He agreed to take his meds only for “the love of his children”, because we were convinced that was the best “medical “ option despite his strong disapproval of them. And even our own internal reservations. Deep down I always hated the drugs right alongside him. But did my best to follow the “medical protocol”.
He often protested, “I’m not crazy, you are!” And there were more times than not, I silently agreed with him especially when dealing with the insane reality of what his treatments consisted of. His anger far too often felt like quite simply righteous indignation. Only I was too pressured by the power and influence of coercion to ever really see straight enough to find the words to advocate in a legitimate way for him or myself.
And I didn’t’ even understand that I was under the influence of coercion, I just knew I needed to follow the doctor’s advice on how to help my father, even if it didn’t seem to make much sense. Follow the rules or end up in the lion’s den right alongside him.
We asked for proof of his illness but the doctors said there really wasn’t any – but that the best way to describe it was that “it was like insulin for diabetes” and he needed to take his meds just like a diabetic. My mother was a type 1 diabetic so we knew the importance of taking her meds.
My dad spent years going on and off of them, when he would go off, all hell would break loose. And the doctors would tell us it was “his disease returning”. So, it seemed to make sense on that level. But something deep down never registered for me about any of it.
The mental health system seemed in too many ways more insane than my father. It was the only area where they seemed to dictate what was to happen to him, where he had little choice, voice or input in the matter, nor did we. That didn’t seem like any kind of genuine or quality health care model I’d ever encountered before and both my parents were medical professionals.
If anything, we, the family, were pushed out of the process, literally locked out, unable to see him. And the “mental illness” never really added up in my mind. Something was amiss. Not only did I not like the term, as in nothing was wrong with his “mind” that I could see, perhaps his judgment or behavior at times, but I didn’t like the term and all that it implied.
I still cringe at the word “mad”, even in the “mad” rights movement, I hate it and all that it implies or any words like it. It is far too one-dimensional and somehow still seemingly permanent. It is too “othering”, placing him outside the human race. A serial killer I might describe as “mad”, but outside those rare extremes it’s a word that feels too charged and above all irrelevant. It seems an internalization of the stigma implied it implies that invites the fight it claims to ward off, rather than just making it irrelevant which is exactly how I see it. Inaccurate at the least.
My father’s actions never added up to being entirely mentally “ill”. They were too inconsistent, and didn’t add up to the father I’d known. It felt like being on a merry go round of confusion trying to figure it out, there were times, he seemed full blown undeniably crazy and still others not, sometimes the most sane one alive. It was hard to keep track of, all I knew was that my life had turned into an anxious ball of concern over his safety.
Within the moments of highest stress, there was little else one could think of. It’s hard to get a call from your father when you’re miles away trying to start your new young adult life when his update is that he’s just had a bout of electroshock treatment and “didn’t mind it at all” - literally willingly offering himself up as a scientific guinea pig - when in my heart I knew better. Electro-shock treatment was the last thing my father would have ever wanted for himself.
No question he became “difficult to manage”, but every time I would have a heart to heart, he always made sense. In many ways, it seemed since the system had rejected him, his only way to reclaim himself was to reject it in return. His crazy behavior in many ways, was a big “fuck you” to the system that had fucked him over.
But, he never put it that way. In fact, while he was going on and off his meds, in and out of hospitalizations, there was no question he was erratic, but the true nature of my dad to me, was always that steady eddy. He didn’t get really riled up about anything that didn’t make sense to get riled up about. He was actually pretty easy going.
But he didn’t like being defined by others that was for sure. Yet who does? And that’s what with this label had done - it had defined him and robbed him of his exquisite ability to self-define – the very thing that had given him his confident and playful identity.
And this is why in many ways, he always somehow continued to make sense. But, I was helpless to help him. I couldn’t talk about it to most people. Most people had no idea of my experience, no frame of reference.
I used to wish my dad could just be an alcoholic like the rest of my friends. I had to pretend it wasn’t happening or that it was all okay despite feeling exactly the opposite. It caused its own trauma in me and in many ways rendered me useless in being able to help him in the ways I had often so desperately wanted to. And even myself.
I was too busy trying to rectify following rules that made no sense to me and survive my own stigmatization. Fighting back the stigma placed on me seemed to become my new full-time job - from something I hadn’t even earned except via the natural innate compassion a child has for their father. Silently fighting the depth of the injustice of it all ironically only rendered me all the more useless in defending myself against it - until my fight resembled their accusations just enough to keep me in a perpetual state of panic – unable to escape. And just enough to be the next generation of scapegoat.
It would become so ingrained, it would be many many years before I would even understand what stigmatization actually even was. And what it’s effects would be on not just my dad, but me and my entire family. I didn’t realize in many ways it was the reality of my own experience that made me feel the way I was, but instead I all too often simply viewed it as my own failing and flaw. The system had trained me to do so. Offer myself up as the ever-willing scapegoat. I internalized it all as my problem. And I was simultaneously resented as “the martyr”. All the while, all of what was happening never made entirely enough sense.
And so we all hung in there in the best way we knew how, but it was a massive disruption and a far cry from that near ideal childhood I’d once known and the father who had helped create it - or family that came with along it and/or any sense of stability I’d ever experienced.
It was replaced by anxiety and a hyper-vigilant need to defend myself from potentially allowing myself into the hands of that system. And standing watch over my dad was always in the background of my life which it just simple overshadowed.
My life became secondary to his “illness”. His life lost to it. It was all consuming. I vowed to myself, I would never let that happen to me. In fact, I unknowingly made it my full time job to fight against it, out of what felt like sheer necessity - which became its own all consuming battle on the forefront of my own life. It would be years before I would understand it’s full impact.
But in the end, I did escape that system. I did survive. And never got snatched up or “caught”. I did escape. But not unscathed.
Post diagnosis, my father became one word, “bi-polar”, not the man I described to you in all his full dimensionality, and enough incredible traits, previous accomplishments and accolades to fill sheets of paper with, not to mention just an incredible rich human being. No, he became “someone and something to manage”. Or at least that’s how the world viewed him. And in many ways it also became the new reality. But to me he was always my pop. I never stopped seeing him, the person who had been, still was and always would be my loyal and devoted father.
He was flawed like anyone, obviously not perfect but who was? As “unstable” as he might have become, I can say that in all of it, I never doubted his love for me. What else really matters?
Now looking back, I can say there was a lot of unnecessary drama, mounds of it, most of which was battled out within my family’s walls, but mostly born not from my father or family but us trying to come to grips with this horrific event that had basically ruined our lives - stolen our father and he from himself.
There was enormous wasted life energy and loads of lost potential. Not just in his life, but all of ours, I can certainly say there was in mine. It shattered my family - The burden too great to carry. And this is why families burn out. It puts too much stress on any family to withstand, even the closest. It certainly challenges everyone at their core. The “treatments” didn’t work and often only either complicated things and in my case definitely made them worse in every aspect.
But as we were going through it, we talked ourselves into believing that it was working, well, it was better than my dad off the drugs. But on them, he never became “normal” again and it wasn’t the drugs to me that truly destroyed his soul. They devastated his body and physically hastened his death without a doubt, but it was the label that really killed him and his spirit.
The stigma was too hard to fight against so in many ways he just gave into it and became the walking personification of a rebellion against it. In some ways it was the only intelligent choice if his life was to remain his own.
Trying to win against the system of psychopharmacology is a battle most don’t want to take on for good reason. In retrospect, I now look back and think that in many ways, my loving adventurous fun father was replaced by literally the power of the state and its threat of coercion.
After all, look at what they’d had the power to do, take down my almighty father and destroy my family. But that didn’t stop him from at root fighting. Perhaps in some ways it made him fight harder. We’ll never know.
And at root I fought along with him in my own way. We all did perhaps in each of our own ways. I came from a family of fighters after all-of course most always for justice only now justice seemed to become somehow strangely remote and newly and strangely unreachable.
I took the heat of what it meant to advocate for him, the equally questionable stares and stigma incurred from whomever, family and people, alike looking at me as though I just might be crazy too. But I never let that system get a hold of me. I made sure of it, I knew better. It was worse than prison as far as I was concerned. And how or why we’d ever had to enter it was beyond my comprehension.
On more than a few occasions, my mother would urge me to take the doctor’s “suggested drugs” to help me keep my sanity, but I never took the bait - even in my most temporarily insane moments, and I had plenty of them. If there’s anything that can lead one to it, this system is it. It knows how to deliver all the right goods.
Despite his hating the drugs and his on and off again compliance, in the end, he did comply until they made him too sick to ironically ever get off of. And in the end, he declined and deteriorated until his “illness” was replaced by an entirely new one - the inability to move from the meds he was taking. Those so long ago partially mentioned “potential negative side effects” had now become his new disease.
By that time, the children he’d “taken them for” were in large part too busy trying to catch up on the lives they missed out on to give him the visits he now yearned for that many miles away in his now near paralytic state. Locked out and away for the rest of his life. It was a wonderful facility as far as they go. But nothing replaces the salve of human connection. His doctor’s medical notes reveal checkmarks by “isolation and loneliness” as two of his largest ailments.
They called his deteriorated state the “paradoxical” effects of the meds. I prefer now to simply call them ineffective, harmful, disabling, dangerous and even deadly – and not just to the person taking them.
He never got his life back as they once promised. And neither did we. We never returned to so-called “normal” or anything close to it.
It ruined our family in more ways than I can count. I now blame psychopharmacology for its intrusion into my life and credit it for not just having ruined the second half of my father’s life but the first half of mine. By the end of his life, my father became so toxic from the drugs, there were very few he could even tolerate anymore, making him nearly impossible to deal with – his judgment so clouded by the effect of the long term use of the drugs. I tried desperately to implement alternative treatments which were costly and pulled money out of my very limited budget to pay for them.
I saw little improvement. And I’d done research that had told me that his “mental illness” was a “brain disease”, Tom Insel head of NIMH made the speech. I still have it recorded. So along with the mainstream treatments, poor guy was willingly loading himself full of all sorts of additional vitamins and alternative health smoothies, concoctions I put together from the incredible amount of time I spent researching to try and help my father. But by then, there was little left to do, he was so damaged.
And for the most part, I was on my own trying to deal with it. One of my brothers had entirely stepped out because he couldn’t deal with it, my mother long gone and my other brother far away. It was like a continual battle upstream that literally went nowhere. By the end of his life, he was so unmanageable that we had to put him away forever for his own safety. Yes take away all his rights and give him over to the state, where we would have no more say in any of his care. None of us had the resources to give him the care he needed. And I wanted to take care of him, but it was just simply impossible within the limitations of my own life.
He would have brought over all sorts of people to my house including drug addicts, prostitutes, and other dangerous types. I just couldn’t risk putting myself in harm’s way as a single female. And as much as I might have been his ally, he was ultimately never going to follow anyone else’s dictates but his own, and as a latin male certainly not his daughter’s. Perhaps his pride was too great, nor could he really trust me. After all I was part of the group of people who had been putting him away on and off throughout his life.
It wasn’t as though I could be entirely trusted even despite my best efforts. I was too restricted in what I could offer him. There’s nothing like testifying against your own father in court to put him away forever which you know will result in the removal of his civil rights, the ones he’d spent so many years helping others fight for and cherishing as an proud and legal immigrant to this country. He demanded to be sent back to his native country “Colombia” during the court proceedings as they courted him away.
By the time he was an old man he could hardly move anymore due to being mostly consistently overmedicated. By that point, it was no longer questionable as to whether my father was “ill” or not. He was diagnosed yet again with “Lewy Body Dementia” which was news to me five days before he died. A dementia that I believe and had often argued was mostly brought on by the long term use of the drugs which continually landed on deaf ears and usually only invited additional strange and suspicious looks about my own mental state from his practitioners.
Clearly all my life, I struggled with whether or not my dad was certifiably crazy or whether it was the system itself that seemed to cement it in.
Just before he died, I received a call about the fact that he was experiencing a steady and rather rapid decline.
When I showed up to see him, of course, I could see that he was once again clearly overmedicated, which I’d been trying to tell his caretakers for months. Later when I looked at his records his dosage had significantly increased from when he had entered the home. They said they needed the meds to “quell his aggression”.
To me, he was just still fighting for his own self determination and didn’t want all those drugs. The nurse even said that he’d held his hand clenched shut with the meds and wouldn’t open it. Wouldn’t that be a sign one would pick up on that would tell a person he didn’t want the meds?
Of course, my complaints went unacknowledged as usual and I was once again treated as though I was the one with the problem-I was accused of “just having trouble accepting my father’s imminent death”. I’d already experienced the loss of my husband. Death was a familiar thing to me. Certainly I knew my father was going to die and on some level none of us are prepared for it ever. But that wasn’t the issue, it was the manner in which he was dying that I had the problem with. Death by overmedication.
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