How Mental Illness Stole My Nephew's Last Hug

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.

For a recent piece about Ben written shortly after he left us click here.

For more information on Children’s Mental Health in Ontario click here.

An (Alternative) Jewish Response to the Morning After Canada Saw Red

The morning after Election Day I opened my Facebook feed to a comment from a friend and fellow parent that their son was being bullied at their Jewish Day school for their parents not voting Conservative. “They’re telling me Trudeau hates Jews and will send us away.” My nearly 11-year old daughter received similar sentiments from friends saying “Your mom is wrong. She’s going to ruin Israel”.

Political debate is a big topic in our house. Whether it’s who rules the radio in the car, or why occasionally I’m the dictator to get us out to school in the morning.  We also talk about governance from driving by Queen’s Park to discussing Parliament Hill. From who is in charge of what, to equality and respecting others here in Canada and elsewhere. We share thoughts and gut feelings about Israel. From human rights and who we live with in Israel that aren’t Jewish but also citizens, to who Palestinians are and what’s right with what they want and what’s wrong with how they go about it.

I returned to Canadian winters from Jerusalem nearly a decade ago to the initial surprise of a Conservative government that was outspoken in its support of Israel. The Jewish community cozied up to this idea like a warm fuzzy blue sweater they could wear proudly.  Over time for many of us in the community the initial warmth wore off and the sweater started to itch, for some it never fit.

But the leadership of the community wrapped itself up in blue. It abandoned almost all pretenses of multi-partisan relationships in the thrill of having a close ear at the power centre. The Conservatives tested the waters of wedge issues and divisive politics in our backyard and started a rift in the community that is now being played out not only at political debates, but on our children’s playgrounds.

The Harper government saddled up and opened its blue sweater for the Jewish community to cuddle into without question. For nearly a decade this government took its cues from the right-wing leadership in Israel to stand still, demand peace and stability while doing nothing to change the status quo on the ground for Israeli citizens both Jewish and Arab. It did little to engage Palestinian leadership or Palestinian society to consider another way or that there would be support from Canada if they did. Arguably the Canadian government gave a nod to the Netanyahu government’s attempt to create second-class citizens through the Nation State Law that triggered an election and followed suit here with such bills as C-24 and C-51. It took a page from Netanyahu’s playbook of the fear of Israeli Arab support for the Left on election day in early 2015 and translated it into wedge politics and fear mongering over the niqab, creating a maelstrom of debate over an article of religious clothing worn by some 300 Canadian women out of a population of 35 million.

Our leadership chose to get comfortable with a government driven by secrecy and division, managing power bases in different corners rather than seeing itself in service of its citizens. We were one of many communities pegged as being a single-issue constituency from a strategy perspective. The Jewish community chose optics of Israel support with grand speeches and deflection of issues on international stages whose sum was mostly diplomatic rhetoric and sabre rattling. Canada’s foreign policy legacy as a peace builder for rapprochement and trust building was kicked to the curb for cheerleading events in the Knesset. Canada is not Israel’s only ally. It does not provide it with weapons or aid packages, it does not go to bat at the table with Israel’s foes to attempt to create a better neighbourhood for the only democracy in the Middle East to live in. In great part because this government chose not to. It chose to disengage on the world stage, and so did we in making our presence heard in all Canadian political forums.

For many in the Jewish community the Conservative sweater became unwearable in the face of discomfort with Netanyahu’s policies. And yet the Jewish community leadership here sat back did little to hear or promote multi-partisan support even when it was spoken loud and clear by the NDP or Liberal Parties. It didn’t encourage us to listen when Trudeau resolutely stated #EnoughisEnough regarding BDS on Canadian campuses or that support for Israel is a moral imperative not a partisan one. When Mulcair spoke openly against BDS and made clear the party position on Palestine, the Jewish community leadership gave it a skeptical nod and no comment.

Leadership and a passion for values starts at home. As a member of the Jewish community here in Canada and as an Israeli citizen teaching my kids Jewish and democratic values it starts with what I can offer them as examples of leadership from my community and our government representatives.

I have spent the better part of three months working on the campaign of a Liberal candidate in a key Jewish riding. During that time there was little engagement or debate with others in my community on the values of the Liberal platform or what the constituents of the riding Jewish and non-Jewish needed from their representative. Instead on many occasions myself and other hard working volunteers were called Anti-Semites, my candidate was declared a traitor and the leader of the party a terrorist who consorts with Iran.

It would be easy to say that the Conservative party under Stephen Harper used his principled brand of Zionism to support Israel as much as it was about domestic advantage in a small but wealthy key constituency. It’s simple to say that Harper “hijacked” Jewish Zionist identity in Canada. However it goes much deeper into the roots of leadership of our community. We got lazy under the cozy sweater we were offered and stopped making Israel a priority at every table. Instead we curled up on the couch, drunk on support that became intertwined with whiffs of overt vitriol amongst community members and at times laden with comments that bordered on intolerance at best and racism at its worst. Many a day I felt almost bullied into silence for having the values that I hold dear both living in Canada and Israel.

We can and must do better. As a Jewish community we have benefitted and thrived in an open, multicultural and democratic society. As a community we have a responsibility to put Israel’s interests at the forefront of our political involvement with the government of the day like any interest group in Canada. But just as we need to station our interests firmly in the political playground that is Canadian politics we need to do it with the understanding that the more groups we engage with the stronger our voice can be heard. We have to talk but we also have to listen. We are a community embedded in strong values of equality, diversity, empathy, compassion and respectable debate. We are a people whose values include rising to the call to action and pursuing ways of peace. These are Canadian values too.

The fuzzy blue sweater didn’t fit me or many others in our community.  It’s up to us not to bemoan the change of government but rise to the opportunity to be “rodfei shalom”  רודפי שלום (pursuers of peace) for the land that holds our hearts in the East from here in the true North. It’s up to us set an example of integrity for our community and for our children of what leadership and advocacy is and what we can do when empowered for the greater good.

Am I less of a Jew for Voting Liberal?

 

Just this past weekend the Jewish calendar marked the beginning of the month of Elul – a time of reflection of actions and deeds of the year past while leading up to the countdown of the Jewish New Year on September 13^th. While the usual talk in the community this time of year anchors around planning for the holidays, this year is different.

This is an election year and the community dialogue has changed. It has descended into something I never dreamed I’d see here in Toronto, a Jewish community traditionally anchored in the values of mutual respect. This year it’s turned into an ugly argument of “us and them”. (Just to clearly define the outrageous lines that have been drawn in the sand for those not in the loop: “Us” being those who support the Conservatives and therefore unequivocally support Israel. “Them” – those who either support Liberal or NDP politics and are being faulted as being anti-Israel and in some cases its gone as vile as declaring those who entertain an alternate political position as anti-Semitic or self-hating Jews.)

Huh? 

I’ve had my fair share of watching my people at odds with themselves, having witnessed the Gaza disengagement on the heels of moving back here from Israel a decade ago this week. Nevertheless I always felt privileged to live in not one, but two democracies where the value of maintaining strong multilateral relationships is a key component of the political conversation.

Last time I checked I now live in a democracy where the Jewish community is fortunate to have the ear and support for Israel from all of its major parties. And last I knew the active and proud Jewish community of Canada is a strong part of the fabric of political life here. Our community has shared values in supporting such principles as the Charter of Rights and Freedoms, a robust immigration policy to create a diverse society, valuing peace, and protecting these principles internationally. Woven into those core principles is a long-time support of Israel and its shared values of democracy, peace and yes, security too. 

This week I was dismayed to have been the recipient of what is now a viral and revolting email exchange that vilified Justin Trudeau as anti-Israel and in some cases alluding to him being him a supporter of the Muslim-Canadian community to the exclusion of others.

What’s even more disheartening is that now with the divide out in the open the JDL seems to feel its justified in boycotting an event for Justin Trudeau and Liberal York Centre riding candidate Michael Levitt at the private home of a leading Jewish community family by making a public spectacle of trying to shut it down at worst, or in the least making those who wish to participate ill at ease.

So I feel the need to ask:

Why are members of my community trying to prevent those of us who are interested from hearing how the Liberals continue to support our values?

Why isn’t the leadership of our community discouraging this kind of behaviour?

Why isn’t our community taking the elections as an opportunity to hear from all of the parties?

The supportive foreign policy of Canada regarding Israel hasn’t changed for decades. It wasn’t invented during the Harper decade. Canada is and continues to be Israel’s ally, it supports dialogue towards a resolution towards peace and it views Israel’s right to defend itself as paramount in defending its population and its values. That is true across the board for the Liberals, the NDP and the Conservatives.

The Liberal party and Justin Trudeau have stood with Israel and the Jewish community time and again. My local Liberal candidate Michael Levitt has a long and active history of supporting Israel in action and in deeds. But now they are being vilified but false messaging and community bullying.

How did our values of supporting Israel through multifaceted conversations with all of our community’s supporters and friends get hijacked by a party of one?

While the Harper government is indeed vocal in its headlines and its statements of support – it has seemingly made our community puppets to its sound bytes. Its’ “Stand with Israel” page (closely modelled after the right-of-centre leaning Stand With Us campaign) essentially alludes that individuals who don’t stand with the Conservatives do not stand with Israel. Does that mean if I stand with the Liberal’s I’m less of a Zionist? Does that make me less of a Jew? How did the Harper Conservative’s “Stand With Israel” campaign make me less committed to Israel?

And that is where I’m left looking at my community and asking: How did this happen? When did our discernment and reaching out to all candidates to promote and express our values go out the window? When did we allow the parties to dictate our values for us? Why am I seeing colleagues and friends in the community from Toronto to Vancouver being called anti-Semites and traitors and being bullied for engaging in discussion on other viewpoints? Where is my community leadership in promoting multilateralism and open exchange to meet with all parties? Who is driving the discussion?

As I prepare to be part of my community in celebrating Rosh Hashanah this year it will be laden with prayers not only for peace in Jerusalem, the place that captured my heart as my home, but also a time of reflection of where I stand as it seems that if I don't stand with a certain party, I don't belong.

On my Facebook Feed the Zionist Union Won – The Israeli Elections and Reality of Winning and Losing

Mina Tzemach the iconic Israeli pollster who has been covering the sport of national elections in this country for over thirty years woke up this morning as surprised as every other Israeli. The Likud and Benjamin Netanyahu who had been trailing in the polls and tied by the time we went to bed had declared victory by 6am Israel time with 31 seats. The Zionist Union tied at 27 according to the polls was counted in at 24.

Polls like our Facebook feeds are a playground of virtual reality. We aren’t really seeing the whole picture, just a slice of what our friends, colleagues or even algorithms in tune with our tweets think we want to be seeing. And let’s admit it – we want to show the best of ourselves, the rosy nice side, not our fears, not what’s making life hard, not the other side of reality.  And that is where the polls and our expectations failed.

Where elections and politics are as avidly watched as soccer, and voting a place of pride - taking part in the exit polls or the “Midgam” as its known is almost as exciting as voting itself. Camil Fuchs the statistician for popular Channel 10 news said that nearly 30% of those asked refused to answer and that when he woke up in the morning to the actual results “I nearly died.”  Analysis of the failed polls indicates that a higher number of voters didn’t want to reveal whose ballot they placed in the envelope. The question is why? Israelis are the least private people I know – they love to talk and tell you how things are –how much they make and how much they’re in debt. So why mum now when polling?

When doing a post mortem on the actual results and compare these elections to 2013 some the conflicted Israeli national conscience doesn’t give us much either:

·      In 2013 the combination of the Right wing parties of Netanyahu’s Likud, Bennett’s Jewish Home and Lieberman’s Yisrael Beitenu gave us 43 seats.  In 2015 they have 44

·      Centrist parties in the last election were Yair Lapid’s Yesh Atid, Hatnua under Livni and Kadima with27 seats. This time the two centrist tickets of Yesh Atid and new flavor of the month Kulanu with Likud defectors under Kahalon gave us 20 seats to swing around the coalition merry go round.

·      The Left, which in the last elections held 21 seats with Labor and Meretz, now has 28 and the Arab parties that ran under a joint ticket this time were up 4 seats.

So the right made no great gains with one seat, the centre lost seats along with the ultra orthodox parties and the Arab parties are up 3 and the left up 7.  Huh?

There really isn’t a winner here. In part because each of the leading sides made their message one that was virtual and didn’t address the reality of the country they wish to lead.  For Netanyahu it was ramped up fears of security – distanced from the certainty that each time the country goes to war there is and will never be a decisive winner – only a continued conflict. He went as far to appeal to the masses of Israeli voters to come out as the “Arabs are being driven to the polls by left wing NGO’s”. In what democracy would denigrating a particular group its of citizens exercising their right to vote be presented as a threat and be tolerated? He went further to try and seal the deal by declaring that there will be no Palestinian state. Offering voters more of the same torpor of being stuck in a heightened state of waiting for the next axe or in this case missile attack to fall. All of this to be one seat ahead from the last round?

The Zionist Union made significant gains but without much in content reality. While Netanyahu avoided the economy and domestic issues, the joint slate of Livni and Herzog left that messaging to its fellow parties of the Left (Meretz) and party members on the (Stav Shaffir) rather them offering it up themselves. Their own stance became beyond being the “alternative” to Bibi with “ of us or him”, which turned into “them or me”. Not enough to move Israelis tired for change but also used to living with more “have not’s” than haves in a land of gross disparities. Israelis have notoriously lived beyond the “minus” for years because the idea of being in the black with fair pay and an affordable standard of living is almost as elusive as a peace process. New York Times Paul Krugman sadly offered,  “At this point Israel may be the most unequal society in the advanced world”.

So who won? While some called it a "win" for the Arab parties, it remains to be seen if they are even willing to join a left of centre coalition. With 71% turnout the winners should have been the electorate in getting the vote out in spite of its cynicism towards its politicians (up 66% from 2013). However even increased by their numbers the electoral threshold of 3.25% and the system that allows 26 parties to run meant that there is no defining voice of the people in what is not laden with fear rather than leadership that offers change. No wonder no one wanted to answer a poll - it was easier to just post "I voted" on your Facebook feed. Albert Einstein once said, “Insanity is doing the same thing over and over again and expecting different results.” Maybe how we vote, and not just who we vote for needs to change.