Bringing It Home: Five

Let’s Talk Big Bad Wolves - by Betty-Lou Kristy

The views expressed on EENote: An EENet Blog do not necessarily reflect those of Evidence Exchange Network.

Preamble

Ever since blog two, I have been promising to write about how to meaningfully engage the expertise of people with lived experience and family members. The different processes and outcomes, negotiating triggers, creating a safe space, and

Betty-Lou with photo of her son
Betty-Lou with photo of her son

the necessity of a delicate roar—given the complexity of these elements, I joked at one point that the blog may have to be called, The Good, the Bad & the Ugly.

Well, I recently encountered the Ugly—or the Big Bad Wolf as I like to call it. I was verbally attacked at a meeting. I was horrified and scared by unprovoked rage, words of resentment, a menacing body stance, and a finger pointed into my face. My multiple traumas were collectively triggered. My pride in always using the delicate roar when advocating was stripped from me. For five days I could not leave my house.

You see, I had my guard down. I was in a well-established familiar situation, with familiar systems-level mental health and addiction people, doing my thing: providing the evidence of lived experience, the evidence of being a family member who lost a son to an overdose. This was supposed to be a safe space, where conduct is trauma-informed. But it wasn’t…

Let’s talk feelings

History has shown that great pain can allow for amazing ‘teaching moments’ – once one works through the pain and can share it, to help guide others.

When one is in an advocacy role, it is important to share in a way that expresses what happened but also the feeling, so that the intended audience can actually experience how something must have felt.

The complex part? Expressing feeling in a way that’s professional and thorough enough to break through all the ‘politics’, differing philosophies, bias, sensitivities, and territorial issues.

Somehow, the ‘voice’ has to quickly try and leverage the common ground in any given situation. The ‘voice’ has to be neutral but not waning. The ‘voice’ has to be inclusive, yet have the ability to differentiate. The ‘voice’ has to break through stigma but not be viewed as a threat. The ‘voice’ has to communicate things that people do not want to hear and do it in a way that makes people grateful they heard it.

Complex or not, it’s important for people like myself to humanize that engagement and make it emotional. We put both a face and feeling to human tragedy and victory. We ARE part of the solution. But sometimes, people forget that we are human.

Simply put, I am a lived experience/’family’ messenger. Don’t shoot the messenger who has evidence to share. (Please.)

Now, let’s talk safety

I do not expect to be treated with ‘kid gloves’—that would be insulting. But for goodness sake, if people are not going to help us negotiate safety then they need to try to at least be cognizant of the trauma we have faced, and continue to face. For people with lived experience and family members, offering our experiences can also be like navigating landmines. There’s a fine line between building yet another level of resiliency and being forced to repair unnecessary, preventable damage.

Part of healing all the traumas in my life has been collecting all my fragmented pieces and becoming whole. Nurturing that devastated inner child. Nurturing that abused and beaten young woman. Nurturing each one of those fragmented pieces of me that got ‘killed’ off with each trauma. I painstakingly rebuilt myself—into a weird mix of jigsaw puzzle and re-glued broken vase. My broken heart did start to heal once I loved those pieces of me back to wholeness.

Then the universe gifted me with a child (Pete) who was my light through all the darkness, and my heart grew stronger and stronger just because of him.

But Pete died of an accidental Oxycontin and psychiatric medication overdose and enormous systemic failures. Everything I had built shattered. Seeing one’s child dead, his body turning colour; seeing him in a coffin; cradling him in his urn as I cradled him as a child, reduced to ashes—I won’t even attempt to transpose those ‘feelings’ onto others; that would be unfair and I would risk triggering someone else’s trauma.

The point is, I fought through it all. But I had to stay in ‘feeling’ mode, in all of its brutal rawness. I could not afford to disassociate. I could not afford to self-medicate with anything, in any way. I could not afford to shut-down.

But the fight wasn’t easily won; I did, of course, fragment again; this was a level of trauma so staggering that it both superseded and re-triggered my entire collective past traumas. I was picking up pieces of myself for years. And my heart—how was I going to repair that type of damage? Truth be told, you can’t. Only someone who has lost a child will understand that. But it still beats. In spite of the fact that it is still broken, I allow it to love. And amazingly, I have nurtured it back to being bigger than ever (even if it is still broken).

I have no hesitation to refer to myself as a ‘wounded’ warrior. That is my reality. That is my power. That and my ‘voice,’ my willingness to stand front and centre, to deliver insight, hope and empowerment. But I have to allow myself to be very vulnerable. I have to take huge risks, negotiate my safety and be cognizant of re-triggered trauma.

I am NOT fragile, far from it.

Providing evidence as a person with lived experience and family member (in all of its varied forms) should not be a jousting match. I am fearless about taking on new opportunities and helping to pioneer a path of many paths. (Most of us advocates are)

But we shouldn’t use the ‘voice’ of someone with lived experience to fill a mandate. You shouldn’t engage a person’s experience without placing value on it. You can’t just break a voice and pick out another. We are not disposable and interchangeable.

Now, let’s talk about moving forward

Was I just a ‘voice’ at a table, that day I was violated? What if what happened to me had happened to an unseasoned lived experience/’family’ advocate? These are not questions I have to ask myself, these are questions anybody engaging us needs to ask.

I am very experienced and knowledgeable about the risks involved in what I do, and am forever negotiating my safety and the safety of others. How ironic, then, that my advocacy to help keep others safe and away from harm – whether that be to help others be fellow advocates, to help anyone negotiate the mental health and addiction systems, or to help parents secure treatment to keep their kids safe (and alive) – created such an unsafe situation for me.

Again, we are part of the solution. We are not a threat, far from it. With a shared vision the possibilities are endless. But I refuse to accept a big bad wolf incident from within the ranks at systems level.

And with this lesson shared, in a professional way, I close the door on this big bad wolf incident and move forward. I have delivered myself out of the wolf’s belly, restored yet again.

I join hands with my inner child, my late son and we skip away singing “Who’s afraid of the big bad wolf?”

Not us.

BETTY-LOU KRISTY is a bereaved mother, in recovery from co-occurring alcohol/multi-drug addictions, trauma and mental health issues who also lost her concurrent disordered son to an accidental Oxycontin overdose.

As a result of Pete’s death, Betty-Lou dedicates her time as a provincial systems level, lived experience and ‘family’ – advisor/ consultant and advocate who additionally provides peer support and outreach at a community level. Betty-Lou is also an experienced speaker, trainer and facilitator who has written three lived experience e-books and is the recipient of the CAMH Transforming Lives Award. You can watch the video about Betty Lou’s Transforming Lives award below. And while you’re at it, check out Betty-Lou’s new anti-stigma video called Stigmatized and Irrevocably Harmed here.

Betty-Lou holds several board directorships, has worked on many specialized projects such as the Minister of Health’s Expert Working Group Narcotic Addiction and The Minister of Health’s Consumer Working Group for the Comprehensive Mental Health & Addictions Strategy. She has both training and past experience within Children’s Aid Society, Big Brothers & Sisters, Restorative Justice, and conflict mediation, and she graduated from the Halton Citizens Police Academy. She is now also a Ministry of Health ACE award recipient in the category Partner Relations.

This blog is part of a series. Check out Betty-Lou’s firstsecond, third , and fourth blogs.