My mistake

Earlier today I published a post that quoted the National Alliance on Mental Illness regarding suicide rates. I failed to put a warning about suicide content in that posting. Please consider this a warning about following that post – that it contains mention of suicide that may be a trigger for some people. I was trying to talk about limited funding for behavioral health.

My Sojourn through Bipolar Illness – Intermixing with Police and First Responders

I am of the mindset that police and college campus police could do well with more training as to what constitutes a paranoid episode that is largely safe and what constitutes a paranoid episode that is largely unsafe.  I feel that the police serve in a hugely defining role as to whether someone experiencing an episode of bipolar illness should go the hospital or be incarcerated.  There is no such distinction for any other type of intervention that the police are called upon to mediate.  It takes a great amount of training about paranoia and how it operates particularly in the minds of our youth.  If psychiatrists are largely unable to determine when paranoia is linked with violence or not after days or months or years of working with that person, think what a challenge it is for a police man or woman intervening with no case history on the patient while being charged with the safety of that patient and all bystanders.  It is a huge responsibility that falls on the police and college police. 

I have worked through NAMI (the National Alliance on Mental Health) in their In Our Own Voice Program to talk with these First Responders and provide more insight into the patient’s point of view when these incidents occur.  I found the reception at that event quite welcoming as if the police or campus police had never had a conversation with someone prone to paranoia when that person was outside of that paranoia event.

In any case, I find the work of police and campus police to be a gargantuan task.  It almost requires the intervening police officer to be all-knowing and to be able to size up the situation in a matter of minutes as to whether the person before them is paranoid and a danger to others or paranoid, a danger to themselves and needing hospitalization.  I feel that additional training in differentiating these behavioral health outcomes should be mandatory both for crisis interventionists as well as medical and clinical professionals.  As a person who has experienced mania and being a danger to self and perhaps others, I readily do not see a clear line for police to follow from which to determine how best to intervene.  If I am unclear on that intervention after 30 plus years of managing (or trying to) the illness, I would imagine most police and campus police feel that they are overwhelmed and alone as First Responders in assessing the case of a behavioral health incident.

I feel for the police and the campus police and their courage in this line of work and believe that greater training like that of NAMI’s In Our Own Voice Program is extremely important.  I had one first responder come up to me at that In Our Own Voice presentation and thank me.  The officer had never talked to someone with a tendency toward paranoia when they were not in a paranoid state.  All he had ever seen was the patient at the height of a paranoid event – he must have assumed through no fault of his own that that state of paranoia was the norm for that person rather than a state that comes and goes and can be managed for the most part through medications and talk therapy.   

The First Responders should have some sort of script that allows them to assess if the danger is being directed internally toward the patient or if the danger is more generalized to people external to the person experiencing the breach of reality.  I do not claim to have the content to that script in full, but my current thoughts about how questions for this script might go is something like what follows.  This script below should be vetted by a team of first responders, therapists, doctors and other professionals and is only a “strawman” from the point of view of one patient.

 I am going to ask you a series of 20 questions.  I would like for you to respond to each question to the best of your ability. OK, are you ready?  First question: 

          1) What is your name?

2) Are you a student here?

3) Are you feeling OK?

4) What is the date today?

5) Are you feeling suicidal?                

6) Have you ever felt this way before? 

7) Do you have a mood disorder illness?   Have you ever been hospitalized for a mood disorder?

8) Are you hearing voices?

9) What are the voices saying?

10) Are the voices asking you or telling you to harm yourself?

11) Are the voices asking you or telling you to hurt anyone else?

12) Do you have a weapon?  Are you intending to use it? 

13) Where did you get it?  Have you had it on you for several days or just a few hours?

14) How long has it been since you took a shower?

15) How long has it been since you had a full meal?

16) Have you been using any mind-altering, recreational or prescription drugs?

17) If so, what are they?

18) Do you feel safer now that the paramedics are here and we are talking?

19) Is there someone in particular you would like to talk to? Your parent? Your friend? Your psychiatrist? Your therapist?

20) What do you need to feel more calm?    

If there had been such a script available for use by First Responders at the West Ferry airport back in 1985, perhaps my first episode would not have been so cataclysmic.  Perhaps I would not have been plagued by security concerns for several years after this first episode if that episode had been less threatening and less dramatic. 

My Sojourn through Bipolar Illness – Paranoid Thoughts and Depression

Just because I have been able to hold a good job (at times) and have married successfully and had a child in no way shape or form means I have been immune from paranoid thoughts, depressive thoughts, anxiety or mania.  My illness over the years includes acute paranoia that I have had to process or let go of and get past. 

My first episode at the West Ferry airport is a case in point.  In addition to that mania and paranoia I have believed that I could see some terrorists in the Himalayas who had two “broken arrows” pointed at the US specifically at Washington, DC.  I have felt that I could see the boot camp of these terrorists as well as know the path that got them to their hide-out and the code associated with both of the bombs at their disposal.  I have envisioned the recovery of these weapons from such a terrorist camp via a team of highly trained military personnel and their dogs. 

The day the Challenger exploded, I was in a complete state of paranoia.  I was on the train from Chicago back to my college campus and believed the conductor was signaling me to exit the train.  I got off in an unknown location and started hitch-hiking down icy back roads in the pitch black of night with snow and frozen ice all around.  At some point I ended up on Interstate 400 going North.  I believed I was conducting the cars in various colors in a symphony along the highway.  I must have been in the middle of the interstate when a trucker named Bill picked me up on the highway and took me to a nearby exit from the highway where by some turn of fate I ended up at the police station.  I remember that the Challenger had exploded and that I felt somehow responsible for this.  I kept repeating that “I have a dream….” like Martin Luther King but instead of stating it I was screaming it over and over as if it were more a nightmare that I had instead of a dream…  Thanks to the police, I ended up back at the hospital on campus.

In addition, I later came to believe that I was a master code-breaker for bombs and machines that had been constructed by the military.  I believed that I was able to isolate code line by line that had been altered by terrorists and to communicate those lines of code to the military so that the code could be disengaged.

In addition, I came to believe that HIV was becoming a food-borne illness in need of early intervention and that a nuclear meltdown had been grossly underestimated by the military establishment — that the whole electric grid was liable to go up in smoke within minutes considering the griddle like effect that the grid provides its ability to relay power between destinations within seconds. 

In the early months of the postpartum period, I believed that three men from Eastern Europe had immigrated to Canada in order to migrate from Canada to the US as Canadian citizens.  I believed that these three men were planning a “nuclear accident” somewhere in New Hampshire such that the entire watershed East of the Mississippi would be unpotable and contaminated with nuclear waste.

Almost all of my paranoid thoughts have involved feelings of unsafety.  Whether around the corner at a neighbor’s house or on the international nuclear war stage, I can get easily paranoid about human safety.    Could these issues of safety be tied to the fact that I was not safe as a six-year-old child?  Probably so – more work is needed.

This tendency toward thoughts of safety more than likely dates back to my first episode in the snow at the West Ferry airport.  When I allowed my fears about safety to be expressed, I was treated as a criminal and as someone who was unsafe.  If my fears had somehow been allowed to be conveyed to friends, family, an airport personnel or even a passer-by, perhaps the reaction to my fears might not have been so dramatic.  Even more compelling, if my fears of flying had been addressed in the airport with airport personnel in a way that they could understand, I may have been able to avoid what became years of preoccupation with fear and safety.  Instead of them seeing me as a threat to self and others, perhaps they would have been able to request I be moved directly to a hospital setting rather than being arrested and handcuffed and locked to the door of a police vehicle with flashing blue lights. 

My Sojourn through Bipolar Illness – Stigma

I have often felt that the stigma associated with bipolar illness is as big if not bigger (twice as big) as dealing with the illness itself.  Every time there is a school shooting or a gun incident or a drug cartel development that involves an unstable person with mood issues, all parties with a behavioral health diagnosis suffer.  The emphasis in society rarely is on developing preventive care for people with behavioral care diagnoses.  Admitting such people to jails appears to be more of the status quo in the years following the closing of many State-run facilities.  Undoubtedly, there has been a cost savings with the closing of hospitals across the United States but the flip side of this is that many people with behavioral health diagnoses end up in jail or homeless on the streets.  Too often people may encounter the fact that there are no beds available when they go to be evaluated for admission to a behavioral health facility.

While I am not an expert in addiction issues at all, I feel that the opiod epidemic of the last several years is evidence of the fact that our behavioral health and addiction facilities are lacking in funding and in expertise while the world is lacking in understanding and compassion.  The stigma associated with having an addiction or an addiction-based personality is a huge factor I believe in addressing this crisis.  What is evident now more than ever is that addiction issues (and behavioral health issues) do not discriminate based on race or socioeconomic stature or religion or any other factors.

I have encountered stigma in the workplace, during the job interview process, in the neighborhood, in the world of health insurance, and just about in every facet of society.  I have often heard of the comparison of behavioral health issues to diabetes.  Would you think less of a person who takes insulin daily? Probably not.  But would you think less of a person taking psychotropic drugs?   Today, the typical answer to this question is probably so.  Would you think less of a person who has exited the opiod epidemic and is actively addressing addiction tendencies?  Hopefully the answer is we are learning to be proud of that person for reaching out and for getting help with a problem that is real across all sectors of American society.

The stigma issue at least in behavioral health tends to feed on itself.  Because the stigma is high with regard to behavioral health diagnoses, I find it hard to share my diagnosis and my daily troubles with others.  This need for secrecy or keeping the diagnosis story a secret in turn creates undertones of distrust or lack of trust and/or continuing questions.  If I share my story with person x, will he or she keep that story confidential or not?  What will be the fallout if my diagnosis is shared in the neighborhood or in the workplace or at my daughter’s school?  These are serious questions regarding a very serious topic.

Mostly I have found that people outside my family circle are not at all aware of or supportive of mental illness concerns.  The education that they receive typically comes through the news where the typical story involves a young teen or twenty-something who is disturbed at home, who may have sought psychiatric care or may not have, and who decides to engage in some sort of heinous premeditated shooting rampage.  Unfortunately these stories of misunderstood teens and young people on a death rampage have become more of a norm in our society in the last ten to fifteen years than anyone would care to admit.

To me there are very clear steps that society should be taking to counter-act these potentially preventable heinous acts of violence. 

These include:

1) Background checks for the purchase of guns and other weapons such that people with a history of mental illness may not purchase or own a gun or weapon under any circumstances.  This includes background checks for all types of gun sales and gun ownership.

2) Some form of alert that can be provided by a mental health worker if a particular patient is in distress and appears to be a danger to himself and others, particularly to others.  Right now, most privacy laws do not allow for that disclosure given doctor-patient confidentiality laws.

3) A clearer understanding for Crisis Intervention workers and teams including training in mental health issues.  First Responders need to be armed with a greater understanding of when a crisis event is a dangerous event for others versus when a crisis event creates danger for only the patient and the patient’s life.

4) Funding and payment to Crisis Intervention workers for this training.

5) Funding and training to mental health workers to help distinguish patients who pose a threat to society as compared to patients who are experiencing a threat to themselves.    

6) Additional early intervention work for teens in inner city environments with behavioral health concerns to get them off the streets and out of association with gangs and gang behaviors with the end game being to treat these kids for psychiatric issues before they get a criminal record and are incarcerated. 

This requires that we look at the cost-benefit of treating at-risk teens for behavioral health concerns versus the current pattern of enabling criminal activity among teens by not providing the behavioral health care that they need until after they are in jails.  In my opinion, society needs to accept the cost of working with at-risk teens on behavioral health issues so as to avoid the huge cost of incarcerating a large and growing sub-population of mentally disturbed people with a history of criminal behavior in our inner cities and towns.    

If we are going to progress past the stigma of mental illness diagnoses, it may be necessary to give up some of our freedoms.  If we are going to differentiate between a mental health event that endangers the patient versus a mental health event that endangers community or society, we people with behavioral health diagnoses need to be willing to give up some of our freedom.  To me giving up freedom is agreeing to sign off on background checks for guns and other weapons as well as amending doctor-patient confidentiality laws if there is clear evidence or behavioral propensity of a danger involving the greater community.  Clearly if we are going to expect care-givers and first-responders to bear the responsibility of determining if the event scope is patient-only versus community-reaching, we will need to provide topnotch education to both mental healthcare providers and First Responders.  Both groups need to be well-versed in signs that distinguish when the patient is a threat to self but more importantly a threat to others.   Both care-givers and first-responders need to be armed with an understanding of how these two scenarios differ and how they are the same with the end goal being the care for human life – the life of a disturbed teen but also the lives of those in community with this teen.

My Sojourn through Bipolar Illness – Surviving the Laboratory Rat Syndrome

The meds discussed here are the meds I have taken – there is no recommended psyche drug here in this post or others as what is therapeutic for one is not therapeutic for all – hence “the laboratory rat syndrome.”

In the 1980’s Lithium and Tegretol for maintenance and Mellaril, Ativan and Haldol for acute break-downs were largely the only psychotropic drugs on the market.  Since the late eighties, this has largely changed with the break-through of any number of medications including Clozaril which I now take.  The issue now is the side effects of these newer drugs.  Their impact on managing the illness has increased 100-fold but the side effects have also increased.  Weight gain associated with new psychotropic drugs is a serious concern and may lead to the onset of Type II Diabetes for me as well as for others.

What has not changed over the years regarding medication is the process by which the correct medications are found and administered. I call this “the laboratory rat syndrome.”  Through no fault of prescribing medical doctors, prescribing the correct medications is often more of an art than a science.  Patients may react to meds in very different ways since brain chemistry for different people and different illnesses may cause people to respond very differently to the same psychotropic drugs.  It is not unusual to try a drug for three or four weeks to see if it works and then change the meds if it does not help sufficiently. 

This “laboratory rat syndrome” requires that the patient partner outright with his or her prescribing doctor.  Being clear and truthful about what drugs are working at what levels is a crucial part of managing bipolar illness or any related mood disorder.   Without this feedback from the patient, the doctor virtually is in a guessing game with the patient. If the patient can provide clear and honest feedback about what medication is working and what is not working, this allows the doctor to more easily do his or her job. 

In the last few years. I have turned a corner with my care providers including working with my therapist and my doctor on meds.  I attribute this success to a relatively new Spiritual goal of becoming transparent in my psychiatric care.  I try not to minimize how I feel and to disclose how a certain drug is working or not.  My communication is straight-forward and sincere with the end goal to find a medication mix that works and that keeps me and my family safe and that allows me in time to live freely and perhaps work a job that I envision.

Medical care in psychiatry also has come a long way since 1985.  Doctors in the behavioral health field seem more “normal” for lack of a better word than their earlier counterparts who seemed to be more fascinated by illness behaviors than interested in helping to cure or manage those behaviors.  Many earlier doctors of mine seemed to be more drawn to the abnormal behavior patterns in me as a patient than drawn to treating or reversing those behaviors.  For the most part in my perception of things, this preponderance for the bizarre no longer seems to be what draws behavioral doctors to their field.  I can vouch for both my current doctor and therapist that they are expert in providing top-notch medical treatment.  Their regard for my person and not their regard for my illness is what I appreciate most in each of them.   And it shows.  Just as meds have progressed in the last thirty plus years, so has psychiatric care as well as resources for family and friends of the diagnosed. 

What are your experiences with trying to find the meds that work for you? Have you also had to try out various meds before finding one / some that is /are therapeutic? Does the process require that you super-connect to your prescribing doctor?

My Sojourn through Bipolar Illness – Family Then and Now (part two)

After the postpartum period began to become more under control, my relationship with my own mother blossomed.  She was able to step in and care for my daughter when I was overwhelmed by postpartum depression.  In addition to her developing as a grandmother to my child, I felt that she over the years began to learn to let go of feeling responsible for my illness or for controlling my illness and was more able to be just “a support.”  She became someone to talk with about feelings and issues when needed.  At other times she was a person to bring the family together in a weekly meal at her house.

I attribute NAMI (the National Alliance on Mental Illness) to a lot of my mother’s development and understanding of behavioral health issues.  NAMI programs helped her just to be there for me as a Mom and a friend.  NAMI taught my mother I believe the importance of just being there – not necessarily doing anything but just “being there.” Granted there were times in the past that I felt that she wanted to be intimately involved in my care and in my therapy in a way that I did not want.  When she gave up this control and decided to focus on being a support, our relationship blossomed as did the growing relationship between her and my daughter. 

Over the sixteen years of my daughter’s life, my mother has become a great presence in our family interactions.  We get together most times weekly or more than weekly for a meal or a soccer game or both. Today in covid-19 times that has migrated to a daily phone call and some outside social time with masks and social distancing. 

My relationship with my husband James has also matured as my health has progressed.  We continue to have our favorite arguments, but in general we are on the same page of putting our daughter first including school time, school work, hobbies like Cross Country, Track and Chorus and her spiritual development.

My husband has continued to be one of my most staunch supporters but not in a way that is easily described.  More than giving me a safe harbor in which to rest my myriad of thoughts and perceptions, he has challenged me to find my rock bottom and work my way out of it.   He is no way gets involved in my illness but rather gently or sometimes not so gently reminds me that my illness is mine to deal with.   This expectation that I will deal with my illness is both verbal and non-verbal.  In addition to working though my illness, my husband has largely been accepting of the fact that a high paying job is likely not going to be something that I can stick with and maintain.   It is with his support that I have been writing this text off and on for the last several years.

In addition to my Mom and my husband in recent years and my sister in years’ past, my in-laws have been extremely supportive of me and my efforts toward financial security.  From the beginning of my relationship with my husband, they have provided fiscal support that has allowed me to work from home on a variety of health and health measurement concepts. Through this work, I have traveled for presentations in Zurich, Switzerland as well as in Brighton, England.  Work also has been presented at CJR School of Public Health.  Without the fiscal support of my in-laws, none of this work would have been possible.  

My family support over the years has grown in parallel to the understanding of the illness among the public and among medical providers.  My family always has provided me support over the years even through some of the most heart-wrenching episodes of my life including fits of blaming them for my troubles. 

My Sojourn through Bipolar Illness – Family Then and Now (part one)

That I have felt loved by my family of origin as well as my family by marriage including my in-laws who put up with a lot of crazy behavior from me in the postpartum period has made a huge difference in my ability to move forward in my prognosis.  Although it felt at times I was going it alone, in reality I have had and continue to have huge support from my family – as much as they were capable of providing given knowledge of the illness at the time.

Throughout my twenties and thirties, I seemed to pivot back and forth between the two models of successful marriages that I knew.  At times I would fall for a guy who had no delight in earthly things (more like my Dad).  At other times I would fall for a guy who was very established in his career and financially secure (more like my stepfather).  This back and forth continued through the time that I met my first fiancé and ended when I met my current husband.  My husband James was a perfect blend for the most part of the values of my Dad’s remarriage and the values of my Mom’s remarriage.

When I met James, he was very informed for a lay person about bipolar illness.  He was successful in his own recovery from addiction and had heard many stories of bipolar illness in that context before hearing mine.  Most of my prior boy friends had little if any experience with bipolar illness.  In addition to his familiarity with my illness struggles, another aspect of our relationship was that we tended to fight well.  Regardless of the topic, our fights were usually brief and seldom fell into the same old rut that marriage disagreements often follow.  We continue to fight well today although we do have our marriage ruts to get through.  The third aspect of our relationship which seems to help a great deal is that we share a faith journey.  This faith journey has shifted in the past year due to a situation at our church which caused a massive leadership change. James and I still stay vested in helping to develop a faith journey for our daughter even though we as a family are not in a church right now.

James’ and my shared goal right now is for me to be volunteering or working a stable but not particularly demanding job preferably part-time.  We are in agreement about what this goal is and what the desired future looks like. We continue to fight about money from time to time but in general our goals are on the same page. 

Whether to seek hospitalization or family care?

There was a time in my life where I lived in the same city as my sister. For a period of about 7 years my sister invited me into her home and volunteered to help administer meds when I was in the midst of what I call a mini-break. I feel like this treatment time in her home was instrumental in the prognosis of my illness. I was able to hang out with family even when I was severely ill.

In more recent years, I have come to understand that in Europe home treatments for mental illness are more popular than here in the States. I don’t thoroughly know why that is. But I do know it takes a village.

The progression of my illness since about 2008 using clozapine has basically stopped the occurrence of these mini-breaks but there may be a time when I bump the meds up for a particularly rough day. This is generally in step with my doctor.

The relative stability on clozapine beginning in 2008, however, was preceded by a time of hospitalizations about twice a year after my daughter was born. This was about 2004 to 2008. Prior I had had a period of hospitalizations from 1986 to 1988.

Do you think those who have severe behavioral health concerns/break-through episodes should be treated in the hospital or by a family member who is educated about treatment protocols, medications and the general course of the illness? What do you think about hospitalization versus family care? What are the benefits of each? What are the drawbacks?

My Sojourn through Bipolar Illness – Family Then (part two)

As an additional exception to the “normal life” rule, my stepmother and my father died respectively in 1988 and 1989 of cancer.  I did not have the opportunity to work through the bipolar illness with them as their deaths were within a few years of my diagnosis.  I remember feeling secure in the fact that I was able to survive my father’s illness and death without a major hospitalization or illness breakthrough. 

On the other hand, my mother and step-dad were quite present in my life from 1985 forward.  Over the next 30 years until my stepfather’s death in the spring of 2013, I would continue to develop relationships with each of them as individuals and with both of them together as parents.  Granted, they did not always know what to do to help me through my bipolar episodes.  Quite frankly, no one did.  But they never stopped trying both as a couple and as individuals.  In any case, I always felt loved if not understood. 

My sister Jane in particular was a huge help during the early years of my illness and always provided an open door for me when I was ill.  This was when I was in my mini-break period from about 1988 to 1995 and stayed with her and her family for 3 to 7 days at a time about twice a year.  This time with care in a family environment gave me the confidence to begin to seize control of my illness outside of a hospital environment but still taking meds.  

Later throughout the difficulties of the postpartum period and forward, my Mom and Step-Dad played an integral role in supporting me through my illness.  After two years into my daughter’s birth, my parents moved back to Augusta to be present in her life.  Weekly dinners together helped form bonds that were stronger than the bipolar illness itself.  My relationship with my Mom grew and grew as she became more involved as a grandmother and I had the opportunity to witness the development of that relationship.  Since the death of my step-father seven years ago, we continue to get together with my Mom on a weekly basis, sometimes more often.  Covid-19 has changed this frequency some – so we talk by phone at least once a day.

I can talk to my sister but not my Mom about the abuse…

I can talk to my sister but not my Mom about the abuse at an early age. My Mom cannot accept that something heinous occurred on her watch, though it obviously wasn’t her fault. My sister and I talk about it from time to time.

My sister several months back informed me that our Dad received death threats when we were little about the work he was doing in the deep South. When my sister and I were growing up, my Dad ran a non-profit to help Black men find meaningful work. This was in the 60s and 70s and for a light-skinned man to be doing this, was not the norm. To this day, I have no idea whether the abuse I sustained is tied in some way to these death threats to my Dad. I assume he had many enemies given the fact that he was so progressive for his time. Maybe those enemies wanted to extend the death threats to my Dad’s family which would explain my early encounter with abuse. I don’t know for sure if this is the case, but it is one scenario that seems plausible.

This disclosure brings us full circle to the events of today – racial justice and Black Lives Matter. Let it be known that some light-skinned folks were in for the fight 50 years ago. Good for them but not so good that we have not progressed further in the course of those 50 years.