‘Advocating For Change without Starting a War’ A Bereaved Mother Advocate & Her Beautiful Son Who Died: Betty-Lou Kristy’s Story

“But through the tragedy of losing my son to opioid overdose death and my battle to stay in my own recovery while grieving that enormous loss; resiliency prevailed. Beauty can be found in the love that binds and inspires a mother to dare enough to care (again) and fight back with dignity, grace & forgiveness = Recovery”

This story is a transcript of the speech by Betty-Lou Kristy at the 3rd Annual Women & Wellness event in Woodstock, Ontario on Friday, September 29, 2017.  Download the original PDF here.

First video – 4 min CAMH Transforming Lives Award
http://www.youtube.com/watch?v=29HMMNJVXyw

Second video – 2:22 CBC -`The National ‘News media 2014- `Rising Opioid Deaths-related deaths in Ontario soar almost 250% over 20 years
http://www.cbc.ca/player/News/Health/ID/2471688550/

Third video – 2:29 min: CBC National News Report: CDC urges U.S. doctors to limit opioid prescriptions with Betty-Lou Kristy, Mar 15 2016)
http://www.msn.com/en-gb/healt…qvXOA?refvid=BBjcVUB

Who is Betty-Lou?  I have personal lived experience with mental health, addiction, trauma & bereavement; a survivour who has secured 18 yrs of substance free wellness and a mother who lost her 25 year old concurrent disordered son to an accidental opioid overdose.

My ‘title’ & descriptor would be (hold on-take a breath…this is a mouthful)

Provincial Systems Level Advocate, Speaker, Educator & Adviser – PROVIDING EVIDENCE, leadership and advice from community to systems policy, planning & governance for mental health, addiction, trauma, grief/loss and bereavement who additionally provides peer support, education and outreach to community and agencies. My past training and experience with Children’s Aid Society, Restorative Justice, Conflict Mediation and completion of the Halton Citizen’s Police Academy also informs my advocacy & perspective. I have a deep respect for community members, fellow stakeholders AND my colleagues within agencies, government etc.

A Mother, Her Son & the Impact of Stigma:

Both my late son and I struggled with substance use and mental health issues. Pete died Dec 23 2001, at age 25, from an accidental mixed drug overdose. Oxycontin medication mixed with psychiatric medication. That is how he ‘technically died’….but in fact he died from loss of hope and the pervasive feeling that the world did not care about him. That he was an ‘addict’. That it was his fault. No matter what I did, I could not love my son back to wellness or restore his dignity. In large part because I did not have any self worth myself- That had been stripped from me too- An indelible stain that was left over from when I too was considered a useless addict.

Care providers could not get us out of the room fast enough. We, at separate times in our journeys became the ‘elephant in the room’. We were not wanted. We were considered to be hard to manage. We were dismissed as non-compliant because of our relapses.

We were blamed, shamed and often told that others who really wanted to get better needed the space that we were taking up. That is how it felt…..and on top of all of that….society dismissed us as drug using misfits who ‘choose that lifestyle’.

Pete and I were both impacted by so many layers of STIGMA at so many intersections of our collective journeys. Stigma contributes to the destruction of life; is a barrier to care and is culpable in many deaths. It is inherently dangerous to any vulnerable demographic because it is a bully and it breeds loud bullies that define, limit and restrict choice…..particularly harm reduction choices. It has this innate ability to de-humanize us.

Both my late son and I struggled with severe & complex mental health issues and the self medicating of those unresolved issues. But somehow back then….the most prevalent label that we received from the professional world and society was ALCOHOLIC & DRUG ADDICT and that label caused us to be condemned.

Somehow that label denigrated our true needs, stripped our value and it was decided that our mental health issues basically came from our ‘life style choice’ to use substances. In short…we were blamed.

Just imagine how that felt!

For both my late son and I, the most pervasive and damaging harm was the way we were treated.

Although it may seem that the collective focus of mine and my late son’s journeys are specific to the concurrent disorders of mental health and addiction and the impact of stigma; it is also about cyclical family breakdown, the broader determinants of health, lack of safe and affordable housing, poverty, abuse, trauma, lack of effective choices, loss of hope-dignity and the punitive nature of failed outcomes that heighten the risks for both parent and child; resulting in devastating consequences & collateral damage.

It is about clearly associating that Pete’s heightened risk…. started many generations before him, coming from a family lineage of addiction, mental health, poverty and trauma.

It is about two children- both my late son, and myself as a child, not having a healthy start in life and how that parent to child dynamic set Pete up for an even higher risk. – The cyclical processes of a ‘damaged’ mother trying to parent her child that she ferociously loves without the skill sets or wellness to do that effectively.

And the impact that had on both of us.

Fourth video – 4 min: – Stigmatized & Irrevocably Harmed (done to the song STIGMATIZED)
http://youtu.be/UROSPJhMjDg

My Journey:

Just to put things into context, I need to shed a little bit of light on myself (Pete’s mom and his only hope).

I was born into a haunted house, being the child of very violent alcoholic parents who both had addiction & mental health issues. My mother drank while pregnant with me and my twin sister. The bloodshed and trauma was horrendous. I was invisible. I was a ghost. Nobody noticed my pain and damage. 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. I was trapped in a dangerous tornado. THERE WAS NO SAFE PLACE FOR ME TO GO.

As I got older, I escaped by being a constant run away and truant from 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 alcoholic that was my son’s father. He was physically violent and sexually abusive to me as well. I knew it wasn’t safe to stay there any longer, but again, I had no where safe and affordable to go. We had to run with whatever we could pack quickly as the police got my then 2yr old son and me out.

By this time I was 25 years old, my father had died and now I was having nightmares, flashbacks and complete recall of all that I had suppressed as a child. I was re-traumatized again from the suppressed memories that flooded back to me. I spiralled into faster 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 way more damaging in his mental, emotional & sexual abuse.

By this time I had spent and for the next years to come, many admissions into mental health hospitals for breakdowns and suicide attempts. I was extremely anorexic, always cutting and self harming and acted on my suicidal tendencies. My diagnoses included rapid cycling bi-polar disorder, acute anxiety & panic disorders, personality disorders; OCD, post traumatic stress disorder….and the list went on.

If I had received early intervention during my traumatic childhood, recognition of that trauma, effective care for the resulting concurrent disorders, harm reduction options, choices for safe & affordable housing; then I could have been healthier sooner as 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 my son and I. 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. My son DESERVED a healthy mother!

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 partner today, 33 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 and find my wellness.

My son was finally going to have the healthy mother that he desperately needed.

Sadly, as I was rising up to take control of my life, my son was now falling into that same pit I just got out of.

Pete’s Journey:

By age nine Pete was struggling and diagnosed by Sick Kid’s with learning disabilities. As he struggled with learning, his self confidence and self esteem plummeted over the years. Frustration and anger morphed into depression, and the anxiety and panic attacks grew out of control.

As a young adult in his early twenties he was boxed in and fighting for survival.

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 as it was his coping mechanism. His drug addiction was to prescription opioid pain killer’s Percocet and Oxycontin……and deep into the abyss did he fall with this addiction.

It started innocently enough as a prescribed treatment from his doctor for his gastric-intestinal flare-ups. The only problem being is that 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 initially been with massive genuine gastrointestinal pain, vomiting and diarrhea….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. It was acute withdrawal symptoms. He was physically trapped and only another dose was going to relieve this.

I tried so hard to find effective help for Pete and could not. I could not get 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 to meet all his needs; absolutely no treatment or service that connected with him. There were NO 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 clinicians did not or would not recognize that Pete was struggling with some very serious mental health issues.

Pete’s mind was becoming unglued and he was now experiencing auditory, sensory and visual hallucinations. I was terrified that he was going to die. Pete was becoming more terrified of living than dying. We both lost hope and were barely navigating the dynamics.

I was close to relapsing myself and our little family was fighting for survival. We were crushing under the pressure. The trauma of my wounded inner child was rising up yet again as I screamed against the wind trying to get someone to notice my son and help us. Once again, I felt I was invisible. I was a ghost. …and worse than that I could not find any effective crisis intervention or tools to help him. We were stuck in a tornado………

Pete’s death:

7 days before Pete died; he was admitted to an acute care psychiatric ward under what was supposed to be ‘supervised watch’. He was not allowed off ward but his hospital roommate was (who also had serious drug addiction issues) and within days, Pete’s drug of choice was snuck back in, when this hospital roommate returned from a 2 hr pass.

For various reasons, Pete’s condition was not noticed by hospital staff even with two warnings from me that day. The lethal combination of opioids mixed with the newly prescribed high powered psychiatric drugs, administered on ward, was missed and on Dec 23 2001, Pete died while a patient in the acute care section of that psychiatric ward. The autopsy and coroner’s investigation proved that Pete, alone in his hospital bed, was dying over the course of 6 hours prior to the fatal aspiration and his death. Nobody noticed. (I guess he was invisible again; just like his mom)

Fifth video – 7 min: Eyes Wide Open (Canada, 2013)
http://www.youtube.com/watch?v=nYnTzI6sfs8

Heightened risks and family deaths:

In my family of three sisters, we have two young people dead already and another who has destroyed his life as a result of addiction. For the boys it was with opioids (narcotic pain medication). These three young adults were all in their mid 20’s.

All of them were dealing with anxiety, depression and self esteem issues. All had genuine chronic pain issues and all were initially prescribed these medications legally from a doctor. And they all got hooked from there.

All three of these boys had mother’s who fought so hard to source help for their children. All three of us sisters desperately needed help from the system to empower us to be effective as caregivers to our children that were dying right in front of our eyes. But we were not empowered by the system. We were ignored, muted, not heard and overtly dismissed because our children were dealing with addiction and were of ‘legal age’ (which seemed very dismissive because all three boys gave written permission for their mother’s to be involved). We were not allowed to be in the cycle of care. We were not provided any resources that could help us to cope, to help us to stay well ourselves under the crushing pressure. Nor were we offered any empowerment tools to be effective caregivers’ for our kids.

CLOSING REMARKS- Advocacy- “Becoming A VOICE”:

Never underestimate the power of hope. Never underestimate the devastation of hopelessness. To me, as a person with lived experience who received care but very little actual ‘caring’ – and as a bereaved mother who watched her haunted son turn into a ghost that nobody seemed to care about; it is all about the foundational layer of caring about each other. It is about the human connection. It is about all of us being treated humanely. We all need to feel valued, respected and treated in a decent, dignified and empowering way. That is what nurtures hope and healing.

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. I have no hesitation to refer to myself as a ‘wounded’ warrior. That is my reality. That is also my power. I am perfectly IMPERFECT…and I celebrate that!

I gravitate to anything that helps me to expand any parameters in order to explore, find myself and then creatively express that to others. If my world doesn’t fit me, then I just change my world. It’s a very creative and healthy means of adapting to reality, living my veracity and NOT allowing myself to be marginalized, victimized, defined or limited. It also helps ensure I stay in my 18-year substance-free recovery, and not relapse back into massive mental health issues while negotiating the reality of being a bereaved mother.

Complex or not, it’s important for people like myself to humanize that engagement. We put both a face and feeling to human tragedy and victory. It allows one to advocate for change WITHOUT starting a war.

I call it the “Delicate ROAR”. It becomes part of building a new paradigm of care because we are shifting paradigms through human connection….

Being the proof that out of chaos comes great awareness

When you fight back with surrender, dignity and grace
When you are brave enough to forgive and follow your heart….
…. even when you don’t know where it is going to lead you

In spite of it all, I still believe in the beauty and sanctity of life
I know of the power of love to transform and transcend all boundaries
I am continually amazed at the ability of the human spirit to get up
Over and over and over again
ONE STEP AT A TIME
WHEN WE CAN
WHEN WE ARE READY

Betty-Lou Kristy
Lived Experience/‘Family’ Advocate- Mental Health, Addiction, Trauma & Bereavement
PROVIDING EVIDENCE from community to systems level policy, planning & governance
2009 Centre for Addiction & Mental Health (CAMH) Transforming Lives Award Recipient
2012/13 Ministry of Health & Long Term Care ACE Award Recipient -Partner Relations-Expert Advisory Narcotics
Contact me at: betty_pdb@nullmsn.com