As a mother dealing with her own mental illness and that of her children, SJ Hart displayed an immense amount of resilience. By reading her story I learned that she not only had to advocate and fight for herself, she had to do the same for her children. In this part of the interview we explored how her mental illness impacted her role as a parent and vice versa.
Tragic and inspirational are the two words that come to mind after reading SJ Hart’s book, Lies In Silence. SJ Hart has a unique experience when it comes to these issues because she is someone with bipolar disorder, a parent, and a clinician, all of which will be explored in upcoming interviews. Hart tells the compelling story explaining the heartbreaking impacts bipolar and co-occurring disorders had on her family. The more I learned about this family and their battles, the more inspired I was to share her story with others. Read Part I
SWH: How did your own history with mental illness impact your role as a parent?
Dramatically and profoundly on every level. My history or legacy with my family/father made me more aware and vigilant to the point of obsession. When my oldest daughter got sick I believed I could save her, because she was managing for a while. But around 10th grade I thought she was going to jump off of a bridge. The bridge scenario was random. The fear of her killing herself was very real. This is the point where my personal life and professional life merge for the first but not last time.
When I became horribly ill at the age of 43, it was a group of good friends and my husband who monitored me for 3-4 years. I had an onset from a migraine medication, so achieving some level of stability took a long time. I had to set goals like food shopping, showering, and safety at night, etc. the priority was to make it through the day. Life as the mother I was….vanished.
My children were sick we’d stay together and hold hands. Sometimes we would cry. We were scared. I would hold them and rub their backs saying the medication would work soon, and turn my head so they could not see my tears. Only years before we had been to soccer games, dance recitals, birthday parties, and the beach.
Once I was less in a black depression was when I started writing the book (Lies In Silence), and really fought for my children. I went from being a child with PTSD, to a successful career woman/mom, to the mother of one child onset age 13 with bipolar disorder (severe), to a 43 year old mother with bipolar and anxiety, with another child onset age 11 with bipolar, anxiety, and ADD, and my youngest son onset age 3 of OCD, anxiety, and some form of bipolar disorder. It was incomprehensible.
There were nights I went to bed hoping not to wake up. But I knew if my children had any chance at all it would be hard work and advocacy from me and their dad.
SWH:What were some of the early signs you noticed in your children and what steps did you take to help them?
Each child was different since most mental illnesses are mostly spectrum disorders, and not only are there a variety of symptoms they are mild to moderate to severe. Then add in they are chronic and the child’s age, it takes some time to tease it all out. Some symptoms are red flags immediately. If they tell you they are seeing things and can describe it in such a way you know it is illness that shortens the time period diagnosing. If they report they are afraid to go out because someone will get them and hurt them. Also something like that is a red flag. But the times where symptoms are not crystal clear regrettably you doubt what they report because the reality sets in with profound grief. Eventually decrease their suffering is the only goal.
In our oldest daughter she had a hard time getting up in the morning. She often pushed the limits, wanted to stay out late, started having long periods of instability, was secretive, but she still exhibited some interest in being with the family.
She started seeing a therapist when my mother died from a brain tumor, and they tried a small dose of an antidepressant. That was when we knew. Her mood flipped in 3 days. She went running down the street on night in bare feet, it was very late maybe midnight, and when I finally caught her I saw the look in her eyes and I knew. I am very detailed about that in the book.
Our second daughter felt like she was being watched, and started to describe seeing a vague picture of a bearded man. Since my husband has a beard it took us a while to figure it out. She also flipped from a med, and at that point she would sleep in a sleeping bag next to my bed.
Paranoia is misunderstood I think. I had that symptom from a medication for one day, and it was horrific. Absolutely horrific. It’s more like a whole body experience of fear with no known source. She had daily paranoia for two years.
As far as our son, we were at the beach on a family vacation. We were riding bikes and he was on the back of my husband’s bike. I noticed him coughing, and when I listened closely I knew he had a respiratory problem. He was diagnosed in the ER with pneumonia. Had I thought of the Jane Pauley book I would have refused steroids, but I forgot. Ten days later he started to rage. He raged for hours at a time. We could not console him.
Med trials at the age of three are very complex and controversial. But his suffering needed to be addressed. My husband and I tell educators and medical providers, it is his suffering today that is our focus. Not what could happen with medication in the future? A gut wrenching decision similar to those made of any parent with a child suffering from a life and death illness. We have today.
Concrete things – individual therapy, group therapy, family therapy, psychiatric medications,
Education teachers, guidance counselors, nurses, administrators, encouraging them to confide in one friend that they have something….depression or anxiety. Sadly some of the less stigmatizing illnesses. Otherwise the secret and the feelings of being broken create a lonely self-imprisonment.
SWH:What stigmas did your own children face as they became showing signs of mental illness?
The one who is different.
The one who is not invited out.
The telephone does not ring.
Social situations if triggering anxiety is like being thrown into a room where everyone has chicken pox, and you have not had the immunization. It is a full sensory experience.
The student who comes late.
The student who sleeps during the day.
The person who is always moody.
Parents do not want them over to play.
No one to go to a school dance.
The list goes on and on.
SWH: In Chapter 8, you speak on the looming genetics that claimed the life of your children, what advice cans you give parents with children who are also facing similar circumstances with their mental illness?
Read and Read and Read.
Effective therapy and medication.
You are smarter than the professionals.
Understand that you are their best chance.
Advocate every day and when your voice is not enough bring others in.
Keep up with research.
Find adults facing similar circumstances and share notes.
Get involved in special education activities.
Take care of your marriage.
Try to set firm limits with your child, and have a plan that you follow in circumstances of safety.
Take each day as one day.
You now have moments.
Adjust your expectations.
Not every day is a learning day in school.
Read, get testing, trust your gut, find effective therapy and prepare yourself for anything. This is an exhausting marathon.
Get adult support for you
The third part of this interview is soon to come, and you don’t want to miss the last installment of “Lies in Silence” with SJ Hart.
Julia Cardoso is the Mental Health Staff Writer with a focus
on Anxiety Disorders. She is a graduate of Emmanuel College with a BA in Sociology and is on her second year MSW program at Simmons College. Julia is passionate about Mental Health and eliminating the stigma.