The views expressed on EENote: An EENet Blog do not necessarily reflect those of Evidence Exchange Network.
By Betty-Lou Kristy
Three Fights and One Epilogue
1) Fighting Stigma
Threaded thru every layer of my late son’s journeys and my own was and still is the impact of STIGMA. Stigma contributes to the destruction of life and is a barrier to care. It denigrates our authentic selves. It de-humanizes.
When Pete died I discovered two more levels of stigma: the inference that somehow Pete was responsible for his own death because he ‘chose’ to use drugs and the inference of bad parenting.
I am real. I adored my son. Pete was and is real. His addiction and overdose death should not define him; he was so much more than that! Giving voice to this brings our authenticity back.
Trying to capture the complexity of our juxtaposed journeys and the impact of systemic failures, lack of early interventions, stigma, family cycles and breakdown, loss of hope-dignity and the punitive nature of failed outcomes is hard to describe when my intention is to provide evidence and not judgement.
The one unique way that people with lived experience and family members can bring life to evidence – and indeed empower its impact – is to capture the emotion, the pain, the fight to survive, the love that wasn’t enough, while also showcasing the resiliency, strength and the ability of the human spirit to get up over and over and over again….
2) Fighting Cyclical Shadows
I was born into a haunted house, the child of very violent parents who had serious mental health and alcohol issues. My mother drank while pregnant with my twin sister and me. I was a ghost; I was invisible and nobody noticed my pain and damage. I was trapped by shadows. There was no safe place to go.
I often wondered why somebody wouldn’t magically appear to intervene and rescue me. I thought it was because I was bad and nobody liked me. As I got older, I escaped by running away and skipping school. I chose to go into foster homes and detention homes to escape the carnage.
I ran away for good at age sixteen. Soon I was married to an abusive man who struggled with alcoholism. He was physically violent and sexually abusive. I knew it wasn’t safe to stay, but again, I had nowhere safe and affordable to go. (I told you these were cyclical shadows.) I’d also given birth to Pete by this point. We had to run with whatever we could pack quickly so that the police could get my then-two-year-old son and me out.
By this time I was 25 years old, my father had died and I was having nightmares, flashbacks and complete recall of all that I had suppressed as a child. Memories flooded back. I spiralled quickly, manifesting extreme mental illness, alcoholism and drug addiction.
My new husband (husband number two) introduced me to a massive volume of cocaine, prescription barbiturates, and marijuana—and I found relief in self-medicating. This husband was even more damaging than the last in his mental, emotional & sexual abuse.
For years to come, I racked up many admissions into mental health hospitals for breakdowns and suicide attempts. I was extremely anorexic, always cutting myself and self-harming. My diagnoses included rapid cycling bipolar disorder, acute anxiety & panic disorders, personality disorders, OCD, post traumatic stress disorder—the list goes on. I even had to endure rounds of bilateral shock treatments, which I never wanted, and which I eventually stopped.
But somehow, and despite my long list, the most prevalent label I got stuck with was “alcoholic and drug addict.” The label denigrated my true needs, stripped me of my value. It was decided for me that my mental health issues basically came from my “choice” to use substances. In short, I was to blame for the state I was in! Just imagine how that felt.
If I had received early intervention during my traumatic childhood, recognition of that trauma, effective care for the resulting concurrent disorders, harm reduction options, and choices for safe & affordable housing, then I could have been healthier sooner. I definitely would not have gotten as sick or as fully entrenched into my addictions as I did.
I could have provided a much stronger foundation for my son. I could have made better life choices for both of us. Maybe, just maybe, Pete would have had a fighting chance. We loved each other immensely. He was my reason for everything. He was my light in a very dark world and I wanted to be the best mother ever to this kid, I wanted to break the cycle….and I was acutely aware that I was failing.
All of this speaks to the importance of early intervention and better coordination of services. Otherwise, kids are going to grow up being shadowed…
3) Fighting Toxic Inaction
Somewhere in all this chaos and distortion I met a man, a stable man without any issues or baggage, who truly loved me and my then-nine-year-old son. He is still my husband today, 27 years later. Because of him, I finally had a chance to start the healing process. I battled back with all I had and started the very long processes to break free of it all. My son was finally going to have the healthy mother that he so needed. I was going to win the fight against toxic inaction.
But just as I was rising up to take control of my life, my son was now falling into that same pit I had just gotten out of. At the age of nine Pete was diagnosed by Sick Kid’s with learning disabilities. As he struggled with learning, his self-confidence and self-esteem plummeted. Frustration and anger morphed into depression, and the anxiety and panic attacks grew out of control.
In time, Pete fell into the trap of escaping the mental and emotional pain through both alcohol and prescription pain drugs. The alcoholism that started with his first round of drinking at age 14 very quickly consumed him. His drug addiction was to the prescription opioid pain killers Percocet and Oxycontin. It started innocently enough as an occasional prescribed treatment from his doctor for his gastric-intestinal flare-ups. The only problem: the medication not only took care of his physical pain, but it also medicated and temporarily alleviated his mental and emotional pain.
He was also now physically sicker than he had ever been with massive genuine gastric-intestinal pain, vomiting and diarrhea, all of this leading to a 40 lb weight loss and five colonoscopies. What Pete and I failed to recognize (because at this point we did not know) was that his constant attempts to stop using these opioid prescription pain medications was the actual cause of his acute pain and physical illness. He was having acute withdrawal symptoms, and only another dose was going to offer relief.
I tried so hard to find effective help for Pete. But I couldn’t get him the early intervention he needed. The schools would not or could not provide the choices he needed for his learning disabilities. There was nothing available; absolutely no treatment or service that connected with him. There were zero harm reduction options.
Pete attempted suicide several times over the years but I was powerless to get him the acute care and intervention he needed because psychiatrists did not or would not recognize that Pete was struggling with some very serious mental health issues. All they saw was the addiction. So, like his mother before him, he was labelled an alcoholic and drug addict. As with his mother before him, stigma denigrated his true value.
Eventually, Pete started experiencing auditory, sensory and visual hallucinations. I was terrified that he was going to die–but Pete was becoming more terrified of living. I was close to relapsing myself.
On Dec 23, 2001 we were both irrevocably injured. Pete lost his life and I lost my son.
It is extremely isolating when one is dealing with mental health and addiction. It’s hard watching a loved one struggle. There is a huge echelon of blame, shame, guilt, self-stigma, and sense of failure. This is only magnified when it comes to society’s tendency to label and disregard us.
Why are we labelled and disregarded? Why all the stigma? Is it lack of education? Personal bias and filters? Fear? Once again, I have a long list—and it could go on.
One of the most effective tools I have discovered for dealing with stigma is being a ‘model’ of what mental health and addiction looks like. When someone sees me, hears me and then meets my late son through me, they realize that we are basically ‘just like them’. (The only difference is that we may have logged a few extra miles than most, going through hell and back.) Most times when we humanize something, we end up ‘normalizing’ it and others realize that there are more similarities than differences.
(Note: by ‘normalizing’ I don’t mean making things more homogeneous and uniform!)
Having meaningful opportunities to participate at a systems level helps us to be seen as the resilient, intelligent, empowered people we are. These opportunities also allow us to model the potential at every level.
With every new endeavour, I become a stronger advocate. I learn new skills, I grow, I re-purpose myself continually, and I get to help negotiate new pathways for others.
(Okay, it is not quite as glamorous as I make it sound! Actually it is really hard work and takes an enormous amount of wisdom, work ethic, balance, and self care.)
In the next installment, I will talk in more detail about some of the specific opportunities I have had to participate at a systems-level. The different processes and outcomes, negotiating triggers, creating safe space, and the necessity of a delicate roar. It might possibly have to be called, The Good, the Bad & the Ugly.
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.