This piece
was originally published in May 2014. See CTV’s W5 on Saturday October 24, 2015 7pm for a full profile on Borderline Personality Disorder and how the Mental Health
system in Canada is and isn’t addressing it. A special thank you to producer
Chad Derrick for bringing this issue to light and love to my brave brother
in-law Larry Zeligson for sharing Ben’s story.
"We are sold
out of hugs at the Hug Store today auntie" those were the words of my then
six-year-old nephew nearly a decade ago. He giggled with delight to see my
reaction. "Sold out? How come?
Don't you always have a full supply of stock? " "Nope" he dug in
- "you need to make a delivery." Our imaginary truck quickly
dispatched ten thousand hugs. "Can I buy some now please? About a
dozen?" Nope - I need to keep them, I'm afraid I'll run out". No
amount of explanations of endless lifetime supplies of love could convince him
otherwise. He had to maintain his reserves he explained, his anxiety clearly on
display and rising, what if there was a war?
Ben Zeligson had
an infectious laugh and a smile that lit up a room. His "orange" hair
matched his bright eyes and his fiery curiosity about anything and everything
around him. My nephew was by all accounts an exceptional young man filled with strength
of character and kindness that left an impression on anyone who met him. His
signature warm hugs in greetings and departures accompanied him with every
step.
Ben was brave and
strong for all the right and wrong reasons. He fought to keep his illness out
of his public life to become an outstanding student, a loving cousin and
friend, a leader among his peers and a champion of all that is good. He fought
against his inner anger and loneliness; he fought against himself, his fears
both internally and externally for years. He fought to keep it hidden, fought
his family and fought treatment. But while all of these battles were raging
inside of him and conflicts with those closest to him struggling to get help,
the health system that should have fought for him in this tragic war did not
and could not. It was a system that floundered rather than helped. Over and
over the family was told that it would have to wait for the "real
crisis" to present itself in order to take action, that he wasn’t old
enough for the crucial assessments that were needed.
And then the
unspeakable happened; our beloved red headed boy lay down and stopped fighting.
On April 6, 2014 my nephew shut the door to his bedroom and shut out the world
forever. Ben struggled with mental illness for most of his young life and lost
his battle with it this past month just after his 15th birthday.
Early diagnosis
of mental illness in children is a reluctant journey as developmental changes
shift and bend. Health workers are disinclined to place labels and give names
to behavioral patterns and indicators. Families are willing to find other
reasons early on, from hot headed tempers, to high strung or anxious
personalities, family circumstances such as divorce, or external social factors
such as bullying can come into play.
However what if
the struggle is internal? What if family histories show otherwise? With diagnosis
not taking place in many cases until age 10 or older there is little time and there
are few options available for those who do not have the financial resources for
private assessments and intervention. Mental health care currently works for
children and youth once the crisis is in full force.
For Ben there
were early signs but few options because the battle was behind an exhaustively
controlled set of outside and inside behaviors that were only revealed to those
closest to him. He saw his first social worker at age seven. At the time
private costs and assessments were the only option to find answers that were
unclear.
As he got older
there were signs of deeper struggles. His father described Ben as having
"two personality platforms" for public and private. Told by health
care workers that he couldn't be helped until he was willing to help himself,
there were again few options, and many referrals. Lots of intake questions but
no diagnostic results and even fewer treatment options.
When Ben unveiled
in his death how deep his pain was, the light was harsh and tragic. His pain was
visceral to all of us now. We were left grasping for the “why” and to put the pieces
together of understanding a system that didn't work in his crisis.
How can a highly
functional and exceptional child threaten suicide for 18 months and have it
fall on deaf ears at ER? Bound by questionnaires and criteria intake teams are
painfully limited under the terms of the Mental Health Act to advise families
and make gut instinct judgment calls. The current system and terms of the
Mental Health Act are a Catch 22 for youth. How can any child at age 14 who is
struggling under the burdens of illness and social stigma be expected to be
fully aware of the consequences of refusing treatment and not have access to proper
diagnosis?
After much
research and consultation with health care workers in other systems, Ben’s
father believed that he had undiagnosed Borderline Personality Disorder (BPD). BPD
is a serious mental disorder centered on the inability to manage emotions
effectively. The symptoms include: fear of abandonment, impulsivity, anger,
bodily self-harm, suicidal ideation, and chaotic relationships. BPD carries
distinctive traits including consistent presentation in families with histories
of mental illness, refusing treatment, highly functioning, self loathing of the
rages it brings on and most frightening of all, a high rate of suicide. There
were red flags seen within the confines of the family, but in the health care
facilities that regularly met with Ben they only saw the outside persona of
control, refusal, and the legal barriers to treating him.
From the
beginning the system failed Ben. First, it did not diagnose early, as currently
BPD is not tested for until age 18. Second, it allowed him to refuse treatment
at age 14 when markers indicated the illness was likely present. Third, by not
allowing access to the tools that can help with BPD due to his age he was
locked out and made to wait. A child at age 14 has to consent for treatment
under the Mental Health Act and their decision is treated with the same weight
as an adult’s. Comparatively we do not let our children behind the wheel of a
car until the age of 16 and then only to a series of graduated licensing levels
with the guidance of adults in order to drive a vehicle.
Ben did refuse
treatment options and most would not have addressed what his father believes to
have been his “true” illness. Instead of better intake and alternate solutions
to allow him to trust the process, there was an endless search for help bounced
by a system of referrals from Sick Kid’s ER, to Hincks-Dellcrest to Sunnybrook
and back. The gaps in the system were evident. He was too young for CAMH, who only
allow for intake at 18. CAMH has the critical assessment tools for BPD and
extremely limited access to its treatment through Dialectical Behavioral
Therapy (there is a one year waitlist for assessment). Apparently mental
illness and BPD in particular, has a coming of age start date, although the evidence
of broken families and data shows otherwise.
The health
system’s crisis mode protocols for youth simply do not work. My conversations with health care workers
from nurse practitioners for trauma at Mt Sinai Hospital, to General
Practitioners, and social workers, have all come to the same conclusions: the
current system harms more than helps young patients, and there are insufficient
resources available and too little is often done too late.
A report from
2010 by the Office of the Provincial Advocate for Children and Youth for
Ontario supports these views and goes further to quote that at least in Ontario
currently "there is really no such thing as a children's mental health
"system" {but rather} Dr. Stan Kutcher commented, "We have a
non-system of non-care". The report
goes on to review accessibility, service availability, children's rights and
protections. It addresses the mental health needs in children and youth as far greater
than the current acute care system can handle. It calls for creating one that
can start earlier in developmental stages and allow for intervention far sooner
for better prevention and long term health care needs. It is a sobering read.
And if that was
not enough to help us fuel a substantive conversation on kids' mental health
and what we need to move it forward, here is a jarring statistic that will shed
some light into where our efforts are currently placed:
·
1 in
4 Canadians will experience cancer in their lifetime.
·
1 in
5 Canadian children will experience some form of mental illness in childhood
and youth.
In Ontario alone
nearly 40% of government health care spending is on cancer while funding for
children's mental health services equals about 1% of the total health care
budget. There are some 500,000 children in the province who need it. It is estimated
that about 2 to 6% of the population is afflicted by BPD. It is more
common than schizophrenia and bipolar disorder.
Ben was too young
to bear his battle on his own. The decision to discus this publicly came from
the belief that striving for mental health and struggling through mental
illness should not only come to life because of tragedy.
Mental illness is
never an easy subject. It's slowly emerging in open discourse to shed some
light on what has been hidden for years in the dark corners of families with
whispers, deeply buried grief, and anger as they bear the role of witness and
carry the burdens that come with the anguish of their loved ones’ suffering. We
can't just talk; the conversation should be with tools of support that can
carry through the darkest days of the illness and into the light of help. We
lost the battle with Ben, but we can chose to fight differently going forward.
By speaking out and making changes we can give others the last hug he so
desperately needed.
Postscript: On
October 19, 2015 Canada chose to elect the Liberal Party and Justin Trudeau to
govern. A key piece of their Health Platform is making high quality mental
health services available to those who need them. #TeamTrudeau this is a call
to action.
For more
information on BDP and how the current system is failing our youth please go to
sashbear.org that is working to break the barriers and stigmas
related to BDP both in the public and educational settings and in the health
care system.
