As we conclude this series with SJ Hart, I am honored to have been able to share her story. SJ’s experience as a mother, professional, educator, and mentor has left significant impact in the mental health community. The strength it took to write her book Lies in Silence will continue to inspire families everywhere dealing with mental illness and its associated stigmas.
SWH: How did your experience with mental illness impact your role as a professional and the use of psychiatric labels?
SJ: It impacted me on multiple levels since my experiences involved several generations, different levels of severity, and profound constant worry once I grasped the magnitude of my situation.
I was quicker to notice symptoms than many of my colleagues. I utilized standard evaluations in the first or second session, rather than waiting. I was questioned about that and always responded that if we thought they had epilepsy or cancer we’d begin evaluations right away.I also engaged any and all personal resources; family members, resources in the community, and educators if we were in school, etc.
As far as labels I define that term in two ways. One is an actual diagnosis, and if my gut tells me something is going on then I use the NOS codes and a rule/out. That is the most effective way to use them. It says as a treating clinician I believe there is a mental illness or illnesses, but I don’t have enough diagnostic information to give a specific code. Then there are the other labels. It appears we live in a culture where everything is labeled. We label everything. In my opinion it is human nature or speaks to our character flaws. We learn them and then we teach them. Wealth, neighborhood, salary, addictions, illnesses, and so on. The language that is used in our culture is so disrespectful and insulting. When I teach we have a discussion about language such as crazy, whacko, dope fiend. Crack whore. Horrible things to say. Horrible.
I facilitated a small training with some middle school professionals some months ago. We discussed something called values clarification. For example I asked how many of you like your job and teaching students. They all raised their hand. Then I asked in all the years you’ve been teaching did you ever have a student that challenged you. In fact there were days you would say you didn’t like him/her. Think about those questions. I went on to ask if any had taught a first period class. They said yes. I asked if any of those students slept in that class. They gave a resounding yes. Why do you think they were sleeping? They said Facebook, drugs, up late watching TV, parents allow, too many extra-curricular activities. Yup. Those are all probably true for some of them.
What if I told you I’ve worked with students in the last 30 years who would stay up until 2am in order to drive to the bar and pick their mother up since she lost her license? He was afraid she would take a ride with a stranger or get robbed which had happened before. He slept in first period class because he was exhausted and he knew his mom was home.
Labels can be powerful.
SWH: Your book Lies in Silence, brings to light many issues that seem to be impacting millions of people everywhere. Out of everything that you have been through what is one thing that you have learned that you want others to know?
SJ: What took so long for those who knew to use the word genetics?
Mental illnesses are brain illnesses. Though they cause symptoms that defy logic, it is a sick brain that has many things wrong with it. Though it is treatable there is no cure, it is chronic, and no two look the same. Shifting our language and education on an international level is what it will take for more people to begin to understand the genetic piece and the brain piece
Most people who commit suicide don’t want to die. They want the excruciating mental pain to go away.
I tried to give one answer Julia, but there is a lot to learn and teach.
SWH: What impact did your illness have on your marriage?
SJ: It took several years to find effective cocktails for me. My husband was exhausted. He had deep lines in his face and large gray circles under his eyes. I guess what I remember of the first few years was his constant focus on safety. He may have been the only safe one. I use the word safety as a broad term. Taking the right meds though a reaction or overdose could happen, cooking without burning down the kitchen down, driving possibly impaired, forgetting an important event, etc.
I felt guilty, burdened, sad, broken and unfit as a wife, partner and friend. One of the questions we’re asked often is “why didn’t he leave?” And when he is with me speaking he gives the same answer every time. “I had a lot of thoughts over the course of time losing my family, but leaving was never one”.
He was relieved when I was stable, we took a breath and reconnected and then tackled services for the kids. There is nothing that prepares you for this type of illness in a marriage. Like most marriages we have good days and bad days. Our new normal as I write about in Lies In Silence, is that there is a distinct change when you now live moment to moment with a potential crisis always looming around the corner.
I’ve been with my husband doing nothing in particular and my mood will crash. I tell him it’s happening because it is frightening every time. He asks how bad it is and then we’re again focused on mental illness. It gets sadder and brings more grieving into our time together. But here’s the thing. I can’t imagine the numbers on marriages and partnerships that live like us on a daily basis. I know our vows say in sickness and in health, but the reality of those vows may not be fully appreciated when you’re thinking about the seating chart and the honeymoon.
Mental illness is unforgiving and it keeps on taking. Marriage is hard work. I’m talking about lasting marriages. Factor in illness and it’s a game changer. We’ll be married 28 years this August. If I had not found a cocktail and stabilized honestly I don’t know how things would be. I am keenly aware of that.
SWH: If you knew how this illness would have played out for your children would you still have children?
SJ: Years ago my answer was I don’t know. This is a very common question at conferences and universities, and it’s a good question. I think people ask it for many reasons one of which is social consciousness. It’s that not PC area people avoid, which is of course is how I educate. The grief of choosing to not have a family, in a society where there are commercials for baby products, baby showers, talk of children constantly, pressure for grandchildren, mother’s day, etc. is a choice of a lifetime of grief that will likely come in waves, assuming you are a person that wanted children.
However my answer now based on our lives since 2005, watching and living with horrific suffering and discrimination others show toward my children, chronic symptoms and unfulfilled lives, I believe based on what I know now I would not have had children in order to spare their suffering. My husband and I have discussed this at length. Watching them suffer daily is unbearable. They suffer in ways that are obvious, and they suffer in ways that are not obvious.
SWH: Fast forward to today, how old are your children and what are they doing?
My oldest daughter is 27. We have had little to no connection in 10 years. She is not in treatment, and can be very toxic to the whole family. She has 2 children from 2 different boyfriends, not to judge just as information. We are not clear how she lives her life. It is a very sad scenario and no doubt is one of the many potential outcomes of mental illness. She got sick at age 15. Up until then she lived a “normal” life with typical adolescent challenges, cheerleading, dating, dances, chorus, etc. But once she got sick her symptoms were very scary, alcohol abuse, leaving the house at night, grades dropped, change of friends, and I found out later she was throwing her meds any away.
Our middle daughter has taken a different path. She got sick at age 11. She had tremendous support in her school, especially her guidance counselor, who we credit for being her safety net all throughout middle school, in spite of severe episodes that included seeing things and horrible depression. She stabilized on a cocktail of meds over the course of years, though she has dumped them several times. She was in remission for 6 years and accepted into a local university. We would not allow her to apply to any university further than 2 hours away. She was furious. We were adamant.
She made it into the program she wanted, and her first spring semester she crashed into a suicidal black depression. Someone close to her had betrayed her in the most hurtful and disrespectful way possible and she became non-functional. She was in bed for mostly 9 weeks. I took care of her at home. I gave her meds, tried to get her to eat and sleep which are two things effected right away. We called a meeting at her school; she was unable to sit up because she had body aches also a symptom of depression. The university position was that she was over 18 and they couldn’t release information. We assured them we didn’t want information, but they needed to hear our information. I reminded them of the data of suicide amongst college students. They listened to our needs for our daughter and how they could modify the semester.
She has held a job consistently since 9th grade in high school. My opinion is that she has had some successes with therapy individual, group and family. She sees a psychiatrist and takes medication and gets blood drawn. She has used her musical talent as her coping mechanism, and surrounded herself with many music teachers, band directors, guidance counselors, and administrators in order to do well. Do I think she has “made it”? I think she has accomplished extraordinary things with or without mental illness. She is 21 yo. She is an accomplished musician and carries an average GPA 3.3. But, she must manage her illness or else her illness will manage her.
Our son is now 12. He has been sick since the age of 4. It is incomprehensible. There are too many awful stories about his development and high need for medication and management with lab work, testing, special education, sensory stimulation, and on and on. He is involved in many therapies, at times he advocates for himself in meetings, and has many adults in his life. But he lacks social skills, suffers from terrible anxiety and lives a life where his episodes prevent any sense of normalcy. He is truly a moment to moment child, and has accidentally overdosed twice and other life threatening stories. He is what I believe is a life unfulfilled. So we adjust our parenting and daily expectations. He is never symptom-free.
He is highly intelligent, reads 5-7 books a week, looks forward to ice cream sandwiches after dinner, enjoys the beach and the rides, and had a special relationship with his grandmother. He cannot usually attend any event or environment with noise, temperature, light or frenetic energy.
SWH: Where are you today in your recovery?
SJ: Julia I am really glad you asked me this question. I actually do not use of the word recovery for chronic illness. As an addictions counselor I do believe the word recovery has a place in terms of a descriptive and progressive process.
However, personally I believe the word “episode” or “symptoms” or “remission” or “treatment” are more accurate.
With that said, my treatment is ever-changing. My team consists of a psychiatrist, occasional psychologist/therapist, PCP, and endocrinologist. I have other team members but they’re related to other medical conditions. I take medication daily which seems to keep me functioning at about 80-85%.
I have “break through symptoms” such as anxiety, the chemical anxiety that is triggered by nothing. I use sleep aids or I don’t sleep, and even with all of this on occasion I will have an ugly irritable swing in mood that I don’t feel coming, or about twice a year my mood slips into the black zone. I have 2 designated people who I call for that. It’s a safety plan until my mood lifts. There’s no predictor for that regrettably.
I would like to continue our dialogue, as I continue to publish and teach on a national and international level. I am horrified at the lack of urgency for the epidemic of suicide and am working to create a suicide education model; I have worked with my children in our district closely with a transciplinary team so that everyone is on board. Many of them have read Lies In Silence, or have attended informal in-services. When I am asked if it is uncomfortable, I say at first it was because it is a risk in terms of discrimination. But what happened was more of an organic development.
When I flew in and out of the airport, took a train or drove many miles, I was very cognizant of the fact that I was educating US communities, other countries communities and not my own. So I reminded myself that mental illness is neither my fault nor my children’s. There are models that worked well in our school district, and lessons learned will be instructive to professionals in academic systems. Whether we discuss IEP, 504 or stories that are not written anywhere, and we learned together because we trusted one another, and cared deeply for my children. These are stories to be told as they are instructive.
We also must open a dialogue about anesthesia and mental illness. This is a conversation that is very personal as I recently had two very different experiences, and though my husband and I went back to teach and advocate, we were shut out, mocked and dismissed. This should happen to no one, with or without mental illness.
This has been another way to educate, opening further conversations, bringing attention to issues so we can join our voices.
We cannot treat mental illnesses accurately until we define mental illnesses accurately. Press for change.