Dear Anne
J. Colin Simpson, August 15, 2024
Barely a week ago I learned of your passing at 91 years of age. Evelyn sent an email to let me know and for the next hour my eyes were blurred with tears and my heart was filled with joy. For I had the profound pleasure of knowing and loving you for 28 years.
You were more than a friend Anne. You are one of the most important people in my life.
We met one fine spring day in 1996 when you were chairperson of the Schizophrenia Society of Alberta, Edmonton & Area Chapter (SSA-EA) and I was desperate for work. You and Patricia hired me to work on the annual Walk & Run for Schizophrenia and together with a committee of volunteers we planned and organized the most successful event SSA had held in years.
The SSA kept me on that winter and soon I got to know “the family movement”. They welcomed me with open arms and without judgement; for in the spring of 1996, at the age of 40, I had my second psychotic episode and my GP diagnosed me with bipolar disorder. He proscribed an antidepressant, Prozac, which kept me from the depths of depression but gave me mania sometimes.
I liked the mania. The energy and creativity it gave me to paint and write and work my butt off.
The members of the SSA Board and the general membership were comprised of parents with lived experience of a loved one with schizophrenia and other mental illnesses and siblings, psychiatrists, professionals such as OTs, Rec Therapists, Psych Nurses, and allies who supported the cause.
The SSA Edmonton Area Chapter was a grass roots movement of “nothing about us without us”. Families noted the “good” doctors and medical professionals were the ones who included them in conversations with their loved ones about the recovery journey. The “good ones” were secure enough to invite families into the room when they met with people living with schizophrenia or other mental illnesses. The “good ones” were the ones who included families and friends in the treatment conversations – how to mitigate symptoms and promote recovery, wellness, and resilience.
Legislation of the day, dictated an adult with a major mental illness “has the right” to exclude families from the treatment conversations as an expression of their right to privacy. However thought disorders and mood disorders wrangle with the brain and sometimes people with lived experience are not the best judges of what their recovery journey should look like. A broken brain can easily make mistakes and put the person at risk of ending up homeless, in jail, or dead.
The ”good ones” understand that families are the only ones with a long term frame of reference. They know the reality that when they are speaking to someone who is sick with a mental illness that the person they are speaking to might not be themselves and as such not necessarily in the best position to make decisions for themselves. Strangely, society understands and accepts this is the case with brain diseases like Alzhiemers or dementia but somehow a younger person who is out of touch and not themselves should have a right to make their decisions entirely on their own. It’s complicated, but currently we err on the side of caution when we should be erring on the side of compassion.
Society neglects people with lived experience when they slip into delusions and paranoia and such in the name of rights and liberty when the exact opposite is true. People who have become ill with a mental illness deserve to be held in protection for their own good and treated with compassion and kindness. Humans have known this fact for millennia. We must err on the side of kindness, compassion, love, and respect and the Schizophrenia Society knows this from lived experience. Rather than pushing people out on their own into a world of harm we must bring them in close and hold them close for their own good.
And that’s what the SSA did for me when those bouts of mania would rear their ugly head and I was out of control. Anne, you and the SSA held me close and gave me a safe place to live and learn and flourish.
Once a week we got together and you shared the wisdom of your experiences with me and we mused about the problems of the world and how humanity might overcome them. Your passion for social justice was infectious and we shared such passions.
You mentored and coached and patiently listened to my sometimes twisted logic learned from an upbringing in a community that struggled sometimes with kindness but rather a community that embraced competition grounded in winner takes all. There were few win-win situations in my childhood upbringing and survival of the fittest ruled the roost.
I grew as a person and began to mature into adulthood and you, Anne, and the SSA Board promoted me to executive director. I was over the moon with excitement and when I learned how to remote desktop I was working from home on evenings and weekends. Prozac was sending me into mania and I became full and arrogant. I worked so hard I burned out and hit bottom.
I had been clean and sober since 1990 but my mental illness got the best of me under extreme self-induced stress. I quit my job as ED and stormed home to find myself unemployed and on the verge of homelessness. Spirally down rapidly my thoughts turned to suicide and I began packing up my small bachelor apartment. I did not wish to leave a mess behind.
One fateful night my friends, Giri and Vriendra, came over for a visit. They asked about the stack of boxes piled up against the wall and asked if I was going somewhere. I replied yes, I’m done, and I am packing things up so I don’t leave a mess behind. Giri asked if I was thinking of killing myself and I said yes. He called a psychiatrist from the SSA Board and we spoke on the phone and I suddenly realized I was making a huge mistake.
I was then connected with Dr. Jan Banasch and she immediately switched my medications to Lithium, a naturally occurring salt which prevents the highs and lows of Bipolar, and Zyprexa / olanzapine, an antipsychotic that is good at tamping down thoughts of suicide. This shift in medication brought me “down to earth” and my maturing into adulthood continued. Dr. Banasch was also a member of the Schizophrenia Society, held in high respect by others for her wealth of knowledge and kind disposition.
SSA had a small office downtown and it held a library maintained by Kay Wilson. Kay was one of the most soft-spoken people I had ever met yet one day over lunch I asked her if she could be anyone in the world who would she be. Without batting an eyelash, she said she wished to be a biker chick. Kay was quick witted and demure which often caught people off guard.
The SSA library was a wellspring of resources, books, pamphlets, stories, fact sheets and one of the premiere books was Dr. E. Fuller Torrey’s Surviving Schizophrenia. Torrey is a world-renowned psychiatrist who talks about the experiences of families upon receiving the diagnosis of schizophrenia or another serious mental illness. He says families often go into shame and blame when they hear the news. They are shamed by the stigma attached to a major mental illness and they often blame themselves thinking they must have done something wrong during the upbringing. The family goes into shock, and grief sets in as they see their loved one has become someone else, not the child they raised with love and care but rather a lost child, struggling with their lot in life.
The optimal recovery journey for a person with lived experience often includes family both given and chosen.
The SSA families knew their loved ones needed to get on with their lives post diagnosis and they believed in the power of art so Patricia Stevenson wrote a readers theatre play called “The Magic Stone”, a story about a young man who develops schizophrenia and he finds a rock that vicariously leads him to a better place on his recovery journey and he grows a bit as a person.
We took The Magic Stone, performed by people with lived experience of schizophrenia, borderline personality disorder, bipolar disorder, obsessive compulsive disorder, depressive disorders and multiple addictions; on the road and performed it in junior and senior high schools, hospitals, and even in surrounding communities as far away as La Crete, Alberta.
It gave great pleasure to the SSA families to see their loved ones grow in confidence as they performed to warmly appreciative audiences. After the play the cast members would sit in chairs on the stage for a question and answer session with the audience. They were the splendid voices of people with lived experience bravely telling their stories and breaking down stigma, myth, and misunderstanding. They were leading the conversation about mental illness, recovery, wellness, and resilience.
After I quit my job from burnout, Giri Puligandla became executive director of SSA and he secured funding for a homeless prevention project funded by Homeward Trust. It was called the Peers Supporting Housing Pilot Project (PSHP). Shortly after this I became ED of SSA again and was fortunate to become the administrative supervisor of PSHP. Teams of two people with lived experience, peers, were trained and given caseloads of other peers who could benefit from improving their housing situation or their recovery journey through learning about skills for independent living, system navigation, and peer to peer support.
Every Thursday morning, I had the pleasure of leaving my office door open so I could listen to the PSHP Peer Support Worker team meetings with the project’s Occupational Therapy assistant. They supported each other as they strategized ways of resolving situations, shared resources, shared their own stories of lived experience, and not surprisingly they had resounding success stories to share. Peer Support Workers change lives for the better.
Anne, one of the most important connections between us was political. You believed in democracy, warts and all, and you believed things would get better if people got together and made it happen. You lead the charge at SSA to be a “small p” political organization. We wrote letters to politicians, met with them privately, wrote letters to the media, and so on. We believed it didn’t matter whether you were “left or right or in between” mental illness and addictions are not aligned politically.
And ultimately, SSA was instrumental in getting legislation passed in Alberta that changed the definition for involuntary committal to hospital from “danger of risk to harm self or others” to “at risk of severe decompensation”.
Anne, I soaked up your belief that things could get better and the passion in me grew. One of the most important things you taught me was to show empathy for those whose ideas I oppose. I was previously dogmatic in my world view and you helped open my eyes to the perspectives of others – whether I agreed or not. This may have been the most important lesson you showed me for it changed me and I grew some more into adulthood.
We both love “a good conversation”. Sure the weather gets it going but a good jaw about the state of affairs of the world was always in order with us. Pouring over the entrails of an election or dreaming of global social justice was grist for the mill. The time always passed quickly when we were together. Filled with gratitude and love I must pinch myself to be sure I’m not dreaming. Farewell my dear sweet Anne Kathleen Packer. I carry you with me wherever I go.
