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.

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

There had been no prior established case of bipolar illness in my family before 1985 when I was diagnosed.  There was an isolated incident of an uncle who wanted to drop out of college and sail a boat around the world, though this incident was not widely discussed then or now.  The uncle with the sailing fantasy never was treated for a mental illness though he continued and continues to be highly religious in his outlook and in his behaviors. 

So, like for many families, this incident of bipolar illness was unprecedented at that time in February of 1985.  Upon return from Ivy College my parents placed me in a local psychiatric hospital.  Within a number of weeks from the episode on the runway of the airport near Ivy College, I was diagnosed with bipolar illness.  This was about in July 1985.  The relay of the diagnosis was less than spectacular.  I was in session with the psychiatrist whose name for the sake of this text is Dr. Hamilton.  At the end of the session Dr. Hamilton informed me that I was bipolar and left little to no time in the session to talk about what that meant or how it impacted me and my family. 

As with any developmental story after being diagnosed, I had issues with my parents that would consume a portion of my therapy early on in the years following college.  A lot of this therapy focused on the death of my older brother John who was an infant when he died of spinal meningitis.  He would have been 2 years older than me.  Through extended therapy in the early years, I pieced together memories that would allow me to see that much of my parents’ separation and divorce could be seen in the light of John’s early and tragic death.  Few parents I learned survive in marriage the deaths of their children.  And so it was with my parents.  Once I understood more about John’s death and its impact on my parents I could begin to process my place in the family as “the replacement child” or not. This seemed to be a place in which my parents diverged.

My childhood appears to have been largely uneventful with the exception of this divorce, which included happy re-marriages for both parents.  But as we have seen time and time again, that may not be the case.  On the one hand, I later began to believe that these two second marriages provided me the opportunity to have two examples of working parents but with two very different sets of role models.  My Dad and stepmother lived a very quiet life with few outside stimuli. My Dad was a minister yet he preferred to be working in the garden on his rose bushes rather than leading a congregation.  This was probably due to the stress of stigma that at the time accompanied the divorce of a member “of the cloth.”  My Mom and step-dad were both very involved career people and active in the church where our family attended.  They married when I was 15.  We had the typical turmoils of a mixed family particularly since there were four teens in the combined family.  The remarriage was more difficult for my stepbrother and stepsister.  Just months before they had been with their mother who was blind from diabetes as she was killed in a car collision.  In hindsight, my parents agreed that this might have been handled differently. 

What I am mostly trying to express about family is that my childhood originally seems to have relatively very little trauma or negligence or abuse.  I was raised by caring parents whose marriage did not work out for reasons beyond my control and theirs.  I continued to claim responsibility for that divorce well into my twenties as most adult children of divorce do.  But overall, it appears at first blush that I had very little trauma compared to others with a similar diagnosis.  Oftentimes, I tell myself I did not have a particularly difficult upbringing.

However, with the benefit and hindsight of a few more years of emotional work and discovery, I am coming to terms with the fact that I likely sustained substantial abuse at about the age of six.  This abuse was likely at the hand of a neighbor.  Regarding this potential abuse, I have deep pockets of black-out symptoms.   I also recall certain images (not exactly memories) of sexual assault but they are very unclear and very murky. Abuse at the age of six remains relatively unexplored territory at this time and will continue to be a focus of work with my therapist going further. 

(To be continued.)

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There is a fine line….

There is a fine line between telling your story and giving advice and I feel I have crossed that line in the past week or so.

If you follow the rules of AA, the idea is that you tell your own story and support others for telling their stories as well. What you don’t do in AA is give advice to people who are sharing. They may not want advice. The advice may be the wrong fit for that person. They may not be at a place where that advice is helpful. There are a million and one reasons NOT to provide advice whereas there are virtually no reasons for not being supportive.

I feel in the last week, I fell into an old habit of giving advice rather than giving support, and this is NOT ok. I would like to apologize here for that. Giving advice is / may be a way of compensating for lack of empathy and that too is not OK. It is some sort of distancing mechanism.

I am relatively new in the blogging community (March). What I have observed is that most people comment on posts that resonate with them and generally provide supportive commentary not advice commentary for a particular post.

At this time, I wish to call myself out for getting in the advice-giving mode in my comments instead of getting in the empathy mode. My apologies to all for this behavior.

So with that apology said, what type of blogosphere comments work for you? Should blogs follow the guidelines of AA where the focus is on telling your own story? Are there blogging rules somewhere that I should know about? Particularly about providing support versus advice?

Celebrating 18 years of marriage!

Today is my wedding anniversary and my husband and I are celebrating 18 years of marriage!

I have posted in a prior post on what I think are some of the essentials to a successful marriage. I am posting again on those criteria with a few additions. These are just my perceptions about my marriage and they do not necessarily translate for all parties. But I thought I’d share in case they are helpful.

  1. Argue well. Don’t go over the same territory over and over. Have an argument. Learn from it and go on – no dredging up issues from two hours ago, two days ago, two weeks ago, two months ago, two years ago.
  2. Share a common faith. This one is hard to do if you have already fallen for someone who does not share your faith. But still, where possible allow faith to help guide you and nurture you as something bigger than the demands of husband and wife (or husband and husband or wife and wife). It is helpful to have a unifier that is bigger than each person in the relationship.
  3. Keep a sense of humor going at all times. Be able to laugh at yourself and with your mate.
  4. Be willing to say I’m sorry readily when you may have made a mistake. There is no monopoly on admitting mistakes even when you did not think you were completely in the wrong.
  5. Be willing to forgive your partner’s weaknesses at the same time as potentially calling out his/her problematic behavior. This forgiveness assumes the behavior in question is not abusive or destructive to you.

What do you think are essential characteristics of a good marriage or a good relationship?