My “April Fool” — the black hole of mental illness health care

All kidding aside, it’s true. My former husband had his first psychotic episode on April 1, 1984. Ever the punster/joker, he later referred to himself in a conversation with me as an “April fool.” Would that it were so–for one can live with a fool.

Diagnosed at that time with bipolar illness, for ten years he kept his demons at bay, continuing with his 25-year career as a full professor at a respected university in Boston. His brilliance dimmed but he continued writing and publishing books and articles.

Why was he able to maintain a certain normality in his life for those ten years? Are all those who suffer such illness afforded that opportunity? No, and there are 5.7m Americans with this illness. That’s why I’m writing today, democrats. The story might move you, I don’t know. It’s long, but skim it or skip it, and get to the bottom line, okay?

Crossposted on Orange.

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In honor of all those “April fools” befallen by mental illness, those whose manic highs lead them to the edge of disaster, or even over that edge, I’m writing to call attention to the tragedy of mental illness and the way it is treated in our “advanced” culture.

[He has given me permission to write about him, but he will not see this because he does not know I write here, nor my handle.]

My particular story is probably not that different from others when there is a psychotic episode involved. I’m not sure how many such espisodes involve the threat of violence.

They say “April is the cruelest month,” and although it’s always been my favorite month, it is the month of a seminal event in my life, a reason for me to stop playing practical jokes and curse the day of April first.

The last days in March that year brought a snow storm. S., as I’ll call him, unable to drive home in the bad weather had to stay overnight at the university. Sleep was always a problem and though he had no medication at that time he might have had a drink or two where he was staying. But he could not sleep that night, nor was he able to get much sleep the next night at home, 3/30. This alone can take one to that teetering edge of pscyhosis.

On the evening of March 31st, S. was revved up, excited over a new writing project. I remember sitting our cozy living room. We lived in one of those “bedroom suburbs” outside Boston, a quiet, “semi-rural” setting at the end of a half mile dirt road. We had only one nearby neighbor and she left home in early morning for her hospital nursing job. Our only other neighbor lived across an inlet, for we lived on a lake.

S. talked for hours about his new ideas. A social scientist, he was always coming up with a new theory that could tie everything together. In fact, a few years earlier he had believed he was going to develop a theory which could pull together all social science disciplines to explain everything, even the mind. There are people who try to do that. [Amazingly, and forgive me for a digression but this is too absurd a reality to pass up, when we visited a colleague of his in Brussels five years earlier, S. and Tony were practically duking it out because they were both working on such a grand theory at the SAME TIME. It just about did their long-standing friendship in because they each wanted sole credit for being the Einstein of the social sciences.]

Back to 3/31. Add the alcohol and you get a super gregarious, but not very pleasant drinker. You see, I wanted to say “drunk,” but I never did use that term in those days of my denial. Such was his frequent state of inebriation in those days, always the night of his having taught classes, whether M-W-F, or T-TH, that he was pitiable. The drinking brought out his depression to such a level that he would become suicidal. He drank so much that he began having black outs. He would not remember talking about suicide or being somewhat verbally abusive toward me. His anger and depression was almost all self-directed or otherwise I suppose I would have dredged myself out of that murk and left.

Ah, but this particular night, 3/31, there was something off. I could not or would not put my finger on it. There was something strange in his ideas but I did not want to see it. He at one point came over to where I was sitting in my comfy armchair and got down on his knees to speak to me earnestly about something, and had never done that before. It seemed odd, but I denied what those signals might have foretold. Later I realized he had given off all sorts of signals I studiously ignored partly because I had no reference point for psychotic behavior or talk. He wanted to go on talking but I said I needed to go to bed and did so. See no evil. Hear no evil.

In the middle of the night I was awakened by S. He stood at the foot of the bed and said some things to me. My brain finally stirred as I heard these words:

………..”I was kidding before. I’m going to kill you.

My heart stopped. Cold dread filled me. He was not joking. He seemed to be serious. As I listened, frozen there, I could not understand his rambling speech. It all sounded crazy, but determined and very, very focused.

My mind immediately started working on my options. He was strong, but had never been violent in the least. I knew he had tremendous rage, mostly toward his ex-wife and lawyers (long story). He was capable of hurting me if he was crazy and my mind now awakened to that reality told me to be very careful. I could not run to the door, he would stop me. I did not want to get out of bed in the middle of the night and try to get to the phone at the other end of the house. Even if I tried he would stop me. If I screamed my two large dogs would begin to bark loudly and drown out my screams, and to what effect? He could hurt me before any help came. It felt like a trap.

My best chance to keep from being harmed would be what? Since he didn’t have a gun, and I knew he was dead tired, I decided I needed to get him into bed where I might be able to calm him down. I needed to keep him there, away from any possible weapon (such as knives). I talked calmly and he eventually got into bed and put his head on my shoulder. He relaxed and fell asleep and I hunkered down within myself, wide awake for the next four hours planning my escape from a pscyhotic who wanted to kill me.

Something others with mentally ill family members will probably relate to is that despite the danger and fear I still wanted if possible to avoid disgrace in having my neighbors find out what was happening! I am still shocked at this today. Anyhow, my plan became this: distract him and find out his mental state before taking any action, get to the phone and call his therapist. Doesn’t that sound strange? I was in mortal fear but I did not want to call the police. For one thing, I knew it would set him off. So when he awoke I was able to say I was worried about him, and more importantly use his ego, or his gradiosity, to get him to agree to see this therapist. Fortunately he was able to see it as a way to prove himself, to show the therapist that he was correct, that he was fine.

Fortunately also, the therapist, Dr. M, was home on this Sunday morning and answered the early call. I told him quietly, without S. hearing, what S. had actually said to me. But Dr. M thought it best if we drove over to the next town to his office to see him! He did not want to make a “house call,” and did not want to send an ambulance or police! If I were him I would have sent help fast!

But no, I agreed to drive S. over to the office right away.

There was no denying it in the light of that April morning. S. was insane. In the car the depth of his problems became ever more apparent. My mind was still reeling, I was in fear. Even though S, did not speak again of harming me, those dread words, “I’m going to kill you” were stuck in my head as if emblazoned on my forehead. I kept returning to that moment in my mind over and over again.

That he was completely out of touch with reality was as plain as day, yet Dr. M, whom we had been seeing together, and S. alone, for perhaps a year, took his time sastisfying himself of this fact. S. was hearing voices and having delusions. What more did he need?  I grew angry and more apprehensive, not knowing what was going to happen.

Dr. M was new at it, having just gotten his Ph.d. in his 40’s after years serving as a pastor of some kind. I liked him and thought he had been  helpful, but I did not expect enough. To me it was a life raft when S. finally had agreed to see someone because he did not “believe” in therapy, didn’t think it would help the likes of him. But he accepted Dr. M.

So what did Dr. M do? Had he arranged for an ambulance to come to pick up S, to arrive after we did? Was there one sitting out there waiting? Apparently Dr. M’s respect for S. and his inexperience told him it would be best for S. if I were to drive S. to the nearest hospital, a drive at that time of day of about 20-25 minutes! It seemed I had no choice, so I agreed, and Dr. M would meet us there, not even following us!

Once in the car, S’s bizarre and grandiose thinking got worse. He told me he was the Messiah and he had things to do which he rattled off from his bizarre little list. You can perhaps imagine how much this threw me. I wanted to jump out of the car, but when you love someone for ten years you want to help them. It was unreal trying to balance my own safety with what was the right thing to do. All my life I’d heard this standard of insanity, that of believing oneself to be the Messiah, and here it was in my very own beloved husband.

S. actually put his hand out over my eyes to keep me from seeing where I was going at times. I can’t remember what he was saying as he did that. But he had written things down on a little card to which he referred constantly, as he was wont to do somewhat anyhow. This elaborate scheme which of course was complete gibberish, nonesensical stuff had been  brilliantly provided to him personally from God.

Somehow we got to the hospital and I walked him into Emergency, relieved when they took him into a room. Sitting there in a daze for at least half an hour I was told he had left the building. They were looking for him. He had found another way out! But they quickly found him. I saw him outside being walked back in and he looked like someone I did not know, so stiff and strange. I remember thinking then that no one could know how bad this was to go through unless they had experienced it, and that I wished it had “just” been a heart attack!

He was admitted in the course of the next couple of hours, then transferred to a small clinic our insurance would pay for, something in a wealthy town for wealthy mentally ill people. But they did not know what to do with him, and when I drove over there to find out what the plan was, I went in to see him alone, and he looked at me, but instead of speaping he began having convulsions. Whew.

It could have been medication, but they didn’t really know. He was sent by ambulance to the better local hospital nearby where he was committed and stayed for three weeks of testing, diagnosis and treatment. I was afraid for him to come home. But of course, he did. I wanted to be elsewhere, wanted to leave him. For me, the dread of those five words would never go away. He was not the same. Medication changed him and the experience he went through. He never got close to seeming the same old S., not to me anyhow. There was always a difference. He stopped drinking and took the medication. He wanted to get back to work though the university had been very understanding and assigned someone else to finish his spring classes. He returned in the fall, a shadow of who he had been.

Because I insisted he continued with medication and a bit of therapy and mostly stopped drinking for the next ten years. He slowly got better, but never back to his old self. Still, he was able to continue in his work and get satisfaction from that. But it pretty much did in our relationship, however that too is another story, isn’t it? Following those ten years S. grew tired of having no manic highs and began to drink behind my back and stop taking meds which is a typical problem for those inflicted with this disease. He decided he needed to find a “replacement” for me, someone who would love him the way I used to. He never understood the blow it had been to me for saying those five words. He would always say, “Well, I didn’t DO anything though.” As if that made it okay, or a mild thing really. He’s never understood how a threat can be a deed in itself, even if one is out of one’s mind.

At that time I told him he had to go elsewhere if he was looking for a new mate, so he left. Since then he has not been able to return to teaching or hold a job. He was in and out of hospitals for the first few years, with risky behavior, he got the message and started living a more healthy life, took medications. He lives what I’d call a “semi-normal” existence. His personality grew more confrontational and disagreeable after his diagnosis. He tended to get into relationships with other people who were/are mentally ill, and scratched a plan to remarry last year because of her mental illness, though he always hated living alone.

                           ~~~~~~~~~~~~~~~~

The tragedy of mental illness and the devastation it creates for families and partners and mostly for the individuals who suffer from it is largely hidden in our society. We do not speak openly of it as a rule. We do not treat it as an illness worthy of insurance coverage equal to physical illness. Often the coverage is non-existent or very minimal.  We were fortunate to be covered by the Tufts, then the Harvard Health plan which at that time was considered quite advanced in mental health care and was one of the first to promote “Wellness” proactively.

From a PDF from NIMH re: treatmentOnly half of individuals with anxiety and depressive disorders are accurately diagnosed, and of those diagnosed, only 25 to 50 percent receive guideline-level pharmacotherapy and less than 10 percent receive evidence-based psychotherapeutic treatments.

With medication people who are mentally ill can function and many, though not all, can lead productive lives. Medical care can give them dignity, hope and help them survive. Is it humane not to provide them this treatment? Is not the cost to society great?

Here you can find figures on Mental Illness in America.

…. mental disorders are the leading cause of disability in the U.S. and Canada for ages 15-44.3 Many people suffer from more than one mental disorder at a given time.

Approximately 20.9 million American adults, or about 9.5 percent of the U.S. population age 18 and older in a given year, have a mood disorder.

The median age of onset for mood disorders is 30 years.

Major depressive disorder affects approximately 14.8 million American adults…  

Bipolar disorder affects approximately 5.7 million American adults…

In 2004, 32,439 (approximately 11 per 100,000) people died by suicide in the U.S. More than 90 percent of (them) have a diagnosable mental disorder…

Approximately 2.4 million American adults… have schizophrenia.

Too many mentally ill people are homeless and untreated. Society threw away the key after locking out many thousands of people suffering from illness! We know now even better than we did 20 years ago that Bipolar illness, like others, is caused by physical occurences in the brain, whether they are chemical or electrical or genetic. Yet we in the 21st century continue to treat people with mental illness as beneath us, beneath treating as whole human beings who can be treated. Even though we have treatments that work for most people for Bipolar and Depression and other illnesses, even schizophrenia I believe, we still do not treat them as illnesses. We have no compassion on people and so we turned them out of hospitals and onto the streets. I cannot say how disgusted I am with my country for doing this.

How many mentally ill veterans are roaming the streets, homeless, today, sleeping under bridges or in shelters? Hundreds of thousands. It is totally shameless that they and others have to endure the ravages of mental illness while society goes merrily along its way on the American Idol Highway and the Iraq Occupation Highway and the John McSame Highway. Just because we cannot see open wounds does not mean they are not suffering just as much.

Let’s finally, once and for all, Americans, change this diabolical situation. For I assure you, all those dealing with untreated mental illness are often walking through horrendous situations. Let us take the charge and help motivate our Democratic Party and our candidates to take the Mental Illness Treatment Pledge! We need to do this, not just have itin the platform. If we do not, we can only fault ourselves, and that is why I am writing today about my own “April Fool.”

I hope by my story you can see that this can happen to anyone, out of the blue! A few years after my divorce I was diagnosed with Major Depression. Your own life could be turned around tomorrow without any warning.

These illnesses can be managed, but only with help they deserve.

 

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18 comments

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  1. (5250) in my county, it was a real eye-opener.  Here, in  avery prosperous county in Northern California, we have closed most of our inpatient beds down.  We have moved our mental health system to the prisons and the jails mostly.

  2. is such that you have to believe that society thinks it is contagious. It is dealt with in a way that seems more superstitious than scientific as a whole. Shameful.

    • Alma on April 2, 2008 at 12:52 am

    there’s the problem of getting the mentally ill person to see the problem and consent to treatment.  Unless they are suicidal, there’s no way to force them to get treatment.

  3. Thank you for the thoughtful essay.

    Bipolars are some of the most creative people in society when they are able to function. Fortunately, there are more treatment options available to treat bipolar disorder.

    Our imprisonment of the mentally ill is counterproductive and morally bankrupt. Our failure to provide mental health treatment to everyone who needs it is destructive to all.

  4. We have moved out of that terrible era in which physical/mental illnesses were attributed to supernatural causes.

    We have moved out. But only barely. Our collective foot is still inside the gate that separates the state of ignorance and superstition from that of scientific knowledge and humanitarianism.

    How much more suffering must be endured before we are able to treat sick people in a humane, enlightened manner?

  5. I can’t imagine how difficult it must be to have gone through what you have. To see someone you love completely falling apart like that, and to realize that you have little help available to you.

    The way we treat people with mental illness is astonishing to me. In my state (Michigan), most of the mental health facilities were closed down by Republican Gov. John Engler in the prosperous 1990s. The mantra was that “we don’t need these facilities, people can pay for mental health services on their own”. They basically dumped thousands of mentally ill people on the streets, without care, shelter, or medicines. Many of these people ended up in prisons… surely, many of them ended up dead.

    Now, our economy is reeling, our unemployment rate (and therefore rate of those with health insurance) is skyrocketing. We need mental health services even more than ever. So many needy people are falling through the cracks, and so many of our leaders turn a blind eye.

    It is so sad how our society can be so cold and uncaring. So many people truly need help. It speaks volumes about us as humans when we ignore the most critical needs of our fellow humans.

  6. Your story is tragic and honest.  Thank you for opening up to us here so that we can learn from your experience.  I think you handled things the way anyone would at the time – as far as missing the signs and denying the problem.   You really came through that night – overcoming your fear to calm him and eventually get the help he needed.   I highly commend you for that and for your effort to raise awareness about mental health treatment (or lack thereof) in the U.S. today.  

    It never occurred to me that this could be a campaign issue though.  Please keep us posted as to how we could influence the candidates – What is the Mental Illness treatment pledge?    

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