I miss my son every day.
Jack was a charmer, a big personality, larger than life, a wonderfully creative comedian and a lovable character who was irresistible.
He was a HUGE basketball fan, so when the Sonics left Seattle, we began attending the NBA All-Star Game every year.
We were in New Orleans in 2014, walking to lunch at Mother’s Restaurant, and I was pretty sure that I recognized the gentleman walking in our direction.
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I whispered, “Jack, I think that’s Charles Barkley!”
In typical teenage, mom-you-are-so-lame fashion, he seemed to ignore me.
I said again, “Jack, isn’t that Charles Barkley?!”
Without even glancing my way, Jack let loose with a melodic, lilting “SIR CHARLES …” The basketball legend laughed and stopped to chat with my son. That was the charismatic Jack that I loved.
Many of my experiences raising Jack, however, did not leave such carefree memories; in hindsight, the majority of his difficult behaviors were likely the unrecognized symptoms of bipolar disease.
We fought to find quality mental health diagnostic and treatment services for my son for many years. But on the morning of Friday, Oct. 14, 2016, two months after he was diagnosed bipolar, we lost the battle when my 20-year-old son died from an overdose.
His bipolar diagnosis, and the initiation of appropriate mood-stabilizing therapy with lithium and depakote, came more than 13 years after his first visit to a psychiatrist and more than seven years of continuous intensive intervention with a multitude of psychiatrists, therapists and treatment facilities in Washington, Oregon, Montana and Texas as we sought help throughout the now-obvious cycling disease process that he was enduring.
Diagnosis of bipolar disorder in children is difficult because so many of the symptoms are confused with those of other common childhood conditions like ADHD, anxiety, depression or obsessive compulsive disorder, or even normal childhood behaviors.
Studies have found that from the time of initial symptoms, it takes an average of 10 years before a diagnosis of bipolar disorder is made and appropriate treatment for the symptoms of mania initiated. Manic episodes in children can be exhibited by increased activity, grandiose ideation, rapid speech, decreased sleep and irritability, and it is often hard to tell the difference between the stuff normal kids do and the early signs of mental illness.
When Jack was a toddler, he was generally cooperative and adorable. More than once, however, I can recall leaving a basket of groceries at the checkout to make a hasty exit, Jack tucked under my arm, arms and legs flailing, about the time one of my patients’ moms would spot me and sing out, “Hi, Dr. Beattie!” One of my jobs as a primary care pediatrician was to provide behavioral advice, but all the “right” parenting techniques didn’t seem to work for Jack.
Jack’s initial consultation with a psychiatrist came when he was 7; he had punched and broken a window. We were told that Jack was expressing disappointment that his parents were divorced, and that he needed increased consistency and counseling for anger management.
We attended counseling, and kept him active to burn off energy. He played soccer, basketball, ice hockey, lacrosse, baseball and football. I taught him to play squash, a fast and exhausting indoor game, for cold, wet winter days. He remained a ball of energy, was extremely social, got along well with others and had many friends.
An ‘addictive personality’
From an early age, Jack had an “addictive personality.” When he got into something, he was in ALL THE WAY. In elementary school, he collected Pokemon cards, Bionicles and Funny Bones. As a teenager, his obsession was sneakers — collectible Nikes, Jordans and Yeezys. He started NW Kicks on Facebook for “sneakerheads” to admire, buy, sell and trade new release and vintage collectible shoes; the site attracted more than 3,000 followers.
I found marijuana in his room when he was 13, and I felt fear. Knowing the extremes of his personality, I realized that ANY alcohol or drug use was likely to become a big problem. We immediately enrolled him in drug-prevention counseling, which evolved into specialized individual and group counseling and then cognitive behavioral therapy with weekly drug testing. His use and behavioral challenges continued to escalate.
Jack was suspended twice in the second semester of eighth grade for impulsive antics. He attended a summer wilderness camp focused on building self-esteem and responsibility; despite his good intentions upon his return, he was expelled from public school two weeks into ninth grade.
I home-schooled until he was accepted into a “recovery high school” where they provided daily counseling and drug intervention. He “failed” the program at the school and was referred to inpatient rehabilitation for addiction for the first time. He was 15.
Despite diligent supervision and myriad services, I realized I could not keep Jack safe at home. From rehab, he went to a therapeutic boarding school out of state. I was assured that the school would absolutely be able to support his emotional and behavioral needs and that he could not be expelled.
Jack was evaluated by a psychiatrist and was identified as having oppositional personality traits and anxiety — no mention of depression or bipolar disorder. Three months later, due to behavioral challenges that I now realize were manifestations of mania, school officials contacted us to recommend that he find another option.
With the help of an educational consultant, and after visiting multiple facilities in four states in just a week, we settled on a residential treatment center and school in Fort Davis, Texas, two plane rides and a three-hour drive, at 85 mph, from home.
A clear plan for his future
Jack thrived on the highly structured schedule and positive peer culture. He again was under the care of a psychiatrist, was treated for sleep disturbance with diphenhydramine and was trialed on medications for possible anxiety and ADHD.
He worked hard on his academics and his mental and physical health. He graduated a year early with his high school diploma and was accepted to Seattle University and came home from Texas with a clear plan for his future and the intent to succeed.
The next four years were a blur of brief successes, during which he stayed clean and either went to school or worked, alternating with devastating crashes of seemingly irrational behavior and drug use, followed by rehab and recovery houses. In August, two months before he died, Jack attempted suicide by overdose and was admitted for inpatient psychiatric evaluation. Only then was the diagnosis of bipolar disorder first proposed.
He was started on lithium and divalproex. His distorted thinking started to clear, and he was discharged to a partial hospitalization program with management by his psychiatrist for stabilization of the new medications.
He and his sister, Lex, visited me in Boise a few weeks later, and we had a fabulous time. “Mom, that’s the most relaxed and fun that I’ve seen Jack in years,” Lex told me. It would be our last time together as a family.
Jack’s mood was still fragile. He was noticeably distressed the day he left and in the coming weeks, I would hear his tone fluctuate on the phone. I was extremely worried that he was using again, and that the wheels were about to come off.
His dad stopped by Jack’s apartment to check on him and, upon counting his pills, realized that Jack had not been taking his meds for a week. They set up a system to use FaceTime when Jack took his meds to support his care. Jack wanted the help.
I recall telling a work colleague the Monday before Jack died that it had been a rough weekend and that I was worried about my son. “How’s Jack?” she asked the following day. I replied, “Well, I know he’s still alive because he texted at 2 a.m. last night to request I arrange a pizza delivery online.” I was not being trite, but trying to make light of the pain and fear that I was feeling.
I spoke with him on Tuesday and Wednesday, and although he admitted he was struggling and was feeling depressed, he assured me that he was OK, had been at work and was going to spend time with friends.
Thursday, Jack emailed his stepmom because he had lost his phone. When she stopped by his apartment that evening, she realized he was high. She promised to return in the morning with a replacement phone, and they agreed he would again start treatment. When she returned Friday morning, she found him dead.
The true cause
The autopsy report listed the cause of death as “acute combined alprazolam and opiate (probable heroin) intoxication.” Notes from Jack’s outpatient treatment the month before he died indicate that he wanted to take his prescribed meds and stay clean and that he had plans for his future. Delayed diagnosis and ineffective treatment of mental illness and addiction were the true cause of Jack’s death.
Jack had access to care. Despite this, the correct diagnosis was not made early on in his disease course; early diagnosis and appropriate intervention may have made a difference. We need a better understanding into the science behind mental health illnesses, including substance abuse disorder, to develop better methods of detection, prevention and treatment. Genetics research also may hold answers.
Jack had intended to be an organ donor, but when he died, he was not a donor candidate. Desperate to support my son’s wishes to help others in the wake of his own tragedy, and knowing something of the precision genetics research taking place at the University of Washington, I asked the funeral home to collect blood and hold it while I did additional research.
I placed a call to Paul Hayes, executive director at UW Medicine-Harborview Medical Center, who, with the help of Richard Goss, M.D., Harborview’s medical director, connected me with Jon McClellan, M.D., who conducts genomic research to discover genes responsible for complex neuropsychiatric illnesses.
“Dr. Jack” picked up Jack’s blood sample, and later that week, Jack’s dad and sister and I met with him in his lab to provide Jack’s extensive mental and behavioral health history and our own blood samples for research. Dr. Jack confirmed that my son was bipolar based on his history of behaviors and response to medications. The two hours that he spent with my family, validating the scientific basis behind Jack’s struggles and how our family could contribute to research that could one day make early detection and treatment of bipolar disorder a reality, was a welcome source of peace in a horrific storm of pain.
When Jack was 5 years old, he underwent a tonsillectomy and adenoidectomy and had a very difficult recovery, during which he was given narcotics for pain. It was the first time Jack took the type of drug that, in the end, killed him.
Would we have treated his pain differently if we had known he was genetically predisposed to addiction? I am hopeful that research will lead to an answer.
When Jack died, the outpouring of support from his many friends was overwhelming. My son was a good man who had consistently provided emotional support and encouragement for others who suffered from mental health and substance abuse disorders despite the pain caused by his own disease.
Deducet me, precor, o deus, vita invenere te. Amo veram felicitatem, salutem et prosperitatem.
This prayer was an inspiration to Jack when things were tough. “May my life lead me — I pray, God — to find you. I love true happiness, health and prosperity.”
It is my commitment, in his honor, to help the patients and families that we care for find happiness, health and prosperity through improved access to mental health services, a dedication to improved understanding about the science of mental health disease and an effort to combat the stigmas of mental health.
Dr. Kathryn Beattie is the executive medical director of St. Luke’s Children’s Services. This article first appeared on Dr. David Pate’s Prescription for Change blog. Dr. Pate is the president and CEO of St. Luke’s Health System. This story was the first of three parts. In part 2, Dr. Beattie writes about how we can help combat the opioid epidemic here. In part 3, Dr. Beattie writes about how the lack of access to care and stigma delay help for our kids.