(5-24-21) I returned to delivering speeches in person last week and flew to Florida to give a keynote presentation where I met Hank and Susan Ashby. I asked them to share their story in a guest blog.
From Tragedy… to Hope
By Hank and Susan Ashby
This is a story about our family and son, Jay Ashby.
We were high school sweethearts and will celebrate 50 years of marriage this June. We were blessed with 3 healthy children 3 years apart. Our eldest son Brandon now lives with his family of 6 in the Washington DC area. Daughter Kristin lives with her family of 4 in Melbourne Florida. Our youngest, Jay was a great addition to our family, and a much-loved son & baby brother!
Jay was a good student; a talented athlete; a musician and artist; he loved surfing and was also a great fisherman. Jay played the upright base and it was comical to see us driving around Ormond Beach, Florida with such a huge instrument jutting out of the car’s sunroof. Jay was a thoughtful, kind and fun boy with a great sense of humor. We had so many great times together whether it was taking family trips to the mountains, fishing, surfing, attending his concerts or Jay’s soccer and basketball games!
Jay was a normal, healthy child much loved by his immediate family and an assortment of extended family and friends – until the the onset of his illness.
Changes in Behavior: Was It Teenage Rebellion?
In his mid-teens, we started seeing changes in behaviors. We heard Jay mentioning repeatedly that people were talking about him all the time and we had a hard time imagining that people were doing that. We hoped it was a phase and would pass. Our worry and concern increased as his illness began to come into full bloom in his late teens. We wondered if this was a major teenage rebellion or a dangerous substance addiction.
It later turned out to be neither. The changes gradually became more extreme and frightening as time went on. He willingly had a few visits with psychologists but his condition continued to deteriorate.
Mental illness definitely impacts the lives of family members and ours was no exception. Jay’s siblings were also alarmed. As our daughter described it, it was as though we gradually lost our “shared history” with him.
Jay Had Become A Stranger
He no longer made eye contact with anyone and it seemed like our Jay had become a stranger. He was angry, distracted and developed odd mannerisms, such as grimacing, tics, and shuffling while walking. Eventually Jay went to a hospital for evaluation and was diagnosed with schizo-affective disorder, a combination of schizophrenia and bipolar disorder…..an incredibly difficult challenge for those afflicted!
As parents, we were in totally uncharted territory now. This was something we had zero knowledge about and it seemed insurmountable for us! We thankfully joined NAMI (National Alliance on Mental Illness), connected with a support group and continued educating ourselves… learning all we could about serious mental illness.
We were finally able to stop blaming Jay, and ourselves, for an illness he hadn’t asked for and had no control over.
Huge Struggle For Our Family – Especially Jay
It was a huge struggle through an incredibly tough period of time for our family. We experienced all the broken parts of our country’s mental health care system, filled with educated and compassionate people who wanted nothing more than to help us—but without sufficient resources their hands were tied! At that time Florida was ranked 49th out of 50 states by NAMI as far as services available to help those with severe mental illness. And last year, according to NAMI, Florida ranked 49th among the states in per person spending for mental health services. (At $37.28 per person).
Jay with his dad, Hank, fishing.
While we can express to you how surreal and depressing it was for us watching our son’s mind and future seemingly unravel, we cannot begin to fathom what it must have been like for Jay! He wanted a college education like his siblings, but managed, with great effort, to complete only one course.
Jay desperately wanted to be a success in life!
As his condition worsened, his growing paranoia was evidenced by disassembled electronics, ceiling fans, telephone, etc. He thought people were spying on him and, as he expressed it, ‘listening to his thoughts’. His curtains were drawn most days and he was alone in his apartment. He must have had so much fear! Doing laundry, obtaining groceries and cooking were major stressors for him and were all he could manage. He was absolutely incapable of working—a great shame to him since he’d always prided himself on holding a job.
In and Out of Emergency Rooms: No Safety Nets
Jay’s journey included multiple emergency room visits, Baker Acts (involuntary commitment in Florida), incarcerations, forced evaluations, competency hearings, and hospitalizations (including private facilities to the tune of $10,000 a month which we paid out of pocket).
We were completely shocked to discover there wasn’t a safety net out there for folks like Jay and no proper supervised housing was available.
We bought a one bedroom condo for him where he lived until being sent to the State Mental Hospital in Gainesville to regain his competency to stand trial for missing court ordered treatment at SMA Behavioral Health. The state hospital’s only focus was simply training Jay to answer a few questions so that he would be “competent” to stand trial. There was no lasting plan or effort to provide the ongoing treatment and medication he desperately needed to manage his debilitating illness!
Waiting List For Assertive Community Treatment
Jay finally qualified for SSDI (disability) and was added to a lengthy waiting list for getting help through Florida’s Assertive Community Treatment Program (FACT) which, due to funding limitations, was only available to the 100 most severely mentally ill persons in Volusia County.
We had tried everything we could think of to get Jay help!
How could a civilized society not have services available for someone who was clearly so ill! If we couldn’t get help for him with all our efforts, what about the other Jays, without family support?
At one point, Jay had threatened to harm himself by jumping off a building someday…
Call From Police
On Valentine’s Day 2010, we received a visit from law enforcement authorities who told us our 25-year-old son had ended his life by doing just that. It happened just a few miles from our home in Ormond Beach. Words cannot describe the grief, anguish and frustration we felt. We later learned that 50% of those suffering from untreated Schizophrenia or Bipolar disorder will attempt suicide during their lifetimes according to the Treatment Advocacy Center.
We cried almost every day the first six months after losing Jay. Valentine’s Day will never be the same for our family. It took us over a year to crawl back into some level of normalcy. It was too late for Jay, but we started thinking about all the other ‘Jays’ in this world and what good we could possibly bring to help them and their families.
A Bible verse in Romans 8:28 inspired us…”And we know, God works for the good of those who love Him and are called according to His purpose.”
Turning Despair Into Hope
How could we turn this negativity around?
A positive use for our pent up emotions was the place to start! We started Jay’s Hope Fund and SMA Healthcare Foundation in Daytona Beach agreed to help us administer it. The purpose of the fund was to provide mental health awareness and suicide prevention education. It gives us comfort to help others impacted by serious mental illness and it provides healing to us by honoring Jay’s name.
Through the years, we’ve heard some amazing and uplifting success stories for sufferers of mental illness! Who knows how different Jay’s story might have been had he the ability to obtain appropriate care! And there are so many others out there just like our Jay… talented, bright, kind people, from families just like yours, who desperately need treatment.
We are excited that Jay’s Hope and SMA Foundation, along with our amazing sponsors have just held the 6th Annual Who is Jay? Mental Health Symposium. We’ve been fortunate to have some of the top mental health advocates speak at the Symposiums.
You can learn more about Jay’s Hope and mental health and suicide prevention education by visiting the “WhoisJay.org” website.
We do not want our story to become your story!
This is why we have become mental health activists. We could not simply walk away and turn our backs on the other Jays out there whose lives can be saved. Our work has helped us heal and, hopefully, helped others.
We welcome you to join us in advocating for what we believe to be the most pressing health issue of today… IMPROVING MENTAL HEALTHCARE!
Join us in making your voices heard.
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