Glass Slippers

(Written Saturday, March 16th at the cabin but no internet access so just posting now)

I spent Friday at Government House participating in a sharing circle hosted by NL’s Lieutenant Governor, the Honorable Judy Foote. The Sharing Circle was for caregivers of individuals with Mental Illness and Addictions challenges.

First of all, let me get this out of the way, Judy Foote is one of my all-time favorite NL politicians, so to be invited to this event by her honour, was an honour! It was Hazel Newhook who first peaked my interest in politics as a young girl from Gander, but it was a powerful group of women who solidified it when I returned to NL in the late nineties and worked at the Confederation Building; Judy Foote, Sandra Kelly, Yvonne Jones, Julie Bettney and Joan Marie Alyward. These women were strong leaders, holding many prominent Cabinet posts, Joan Marie Alyward became the first female Minister of Finance for NL. There have been great NL female politicians since but these five women as a group had a strong voice and were movers and shakers amongst an equally “powerful” group of men. I never felt they were used to fill a gap or to ensure gender equity; they proved to be the best people for the jobs they did. Three of these women are also heroes in NL’s Breast Cancer Community, Foote, Jones and Bettney, all survivors who shared their challenges during their public lives. Sharing is so important for us to learn the human impact and better understand other’s struggles.

The caregivers who shared yesterday were passionate and emotional; we helped each other feel less alone; we shared experiences that may have shocked anyone without lived experience; and many of us shed a few tears as we listened. To be amongst a whole group of people, not just one other at a social gathering or the token few at a family gathering who understand, was a treat in and of itself. What was most profound was how we couldn’t let go of our advocacy role as parents, husbands, wives, grandparents, sisters, brothers etc. As great as our facilitator was, trying to keep us on the topic of ourselves and our own self care was not an easy task. The sharing circle was for us to get peer support, which I believe we did, but the majority of our conversation focused on our loved one’s experiences and the injustice within the “system”. Maybe because we were amongst officials, in an official place, it was hard not to be an advocate instead of an individual, we weren’t giving up the opportunity to tell our loved one’s stories and push for change. It is always, every waking moment of our lives, hard to focus on anything else but that.

Comments being made all around me sounded familiar, “I can’t force him to go to school”; “we had her certified three times”; “the doctors wouldn’t talk to me as a parent”; “they’re not allowed to vote, smoke or drink alcohol at 16 so why do they get to make their own medical decisions?”; “there was nowhere to turn for support in our community”; “I should have seen the signs”; “If you’ve never experienced it yourself, you wouldn’t believe it; “He was my support, the strong one, there were no signs”; “She was so successful and influential, no one expected it”; “We just feel helpless all the time”; “Two of us can’t get away the same time, we vacation separately and that affects our relationship”; “He’s almost 32 but we are scared every time he leaves the house”; “All our relationships are consumed with dealing with or talking about her challenges”; “Medication alone can’t fix it”; “Will she ever be independent”; “I’m sick of walking on eggshells”; “Sometimes, I give in because I just need peace in the house”; “We’ve learned the patterns and know when it’s coming”; “Not all medical professionals even understand”; “Stigma is still there, not everyone talks about it” etc etc

Just as the Honorable Judy Foote shared about her Cancer diagnosis; she believes everyone who hears a cancer diagnosis goes through mental health challenges, it is true care givers of loved ones with mental illness and addictions also go through their own mental health challenges. Whether you live with or are estranged from that loved one, it haunts you. Many parents have opened up to me about their addict children who they are no longer in touch with, they constantly worry about where they are, who they’re with, are they safe, when will “the call” come” etc. or parents living away from their loved ones who have mental illnesses, worrying if they’re taking their meds properly, making all their appointments, being taken advantage of or doing ok in their new job. We all wonder if we contributed, play the blame game and try to rationalize the behaviours of the illness.

How do you rationalize suicide or death from overdose? How does a partner or parent move on with hope? I am happy to say, yesterday, we heard from many inspiring loved ones who are doing just that in very healthy ways. They have found the strength to share, to keep their loved one’s memories alive and use their experiences to help others. You don’t need to focus on Robin Williams, Anthony Bourdain, Kate Spade and a multitude of other famous successful people to prove the power of mental illness, just listen to local stories about people right here in NL; sons, daughters, brothers, sisters, spouses etc. of your neighbours.

My brother, who is a high school teacher was asked to do the eulogy at a student’s funeral who committed suicide. He was nervous when he saw her mother’s number on the phone after learning of her death, concerned why she would want to talk to him so quickly after, immediate feelings of guilt came over him but the call was to ask him to do the eulogy. She told him her daughter always loved Mr. Power because he never judged her and never gave up trying to help her. Let’s all continue to try to help others, do what we can, treat everyone without judgement and never let a lost life go unnoticed regardless of the reason of death.

Victoria Best’s family was there yesterday, her story has been told publicly many times so I don’t mind sharing her name. She was an advocate for mental health, was living with mental illness openly and successfully but sadly, was lost to suicide. Her family told stories about positive changes that have occurred in their small community since her death. Her grandfather was a long-time mayor in their community, her father a teacher and her grandmother a cancer survivor. Their sharing was powerful; her father read a post she wrote shortly before her passing which highlighted the lack of services she received when she self identified as a person in mental health crisis at an ER; her grandmother referred to being treated as a queen during her cancer treatment and how Victoria and people with mental illnesses should be treated the same. They have continued her advocacy and started a legacy in her name to help others.

Last year, I know of three lost lives in our small community due to accidental overdoses and/or relapse to addictions. All of which, were clients at my work and who’s lives mattered to their families. They were not vocal or public about their struggles so I do not want to name them but for people living in Gander, these deaths happened in your backyards, they were individuals living in and struggling in your communities. Two were very visible to us working in social services and we all had multiple opportunities to interact with them. Did we see them as drug addicts who mistreated their families and took advantage of the system? Did we treat them fairly? Did we care they died in our communities and use their deaths to learn about and help others? I know I never saw them as drug addicts, treated them unfairly or failed to recognize what their deaths could teach the rest of us. My lived experience allowed me to have a different perspective; everyone there yesterday would most likely, understand that perspective as well. Who we really need to share with are those who don’t have lived experience; many people who don’t understand have never had addiction touch their lives intimately; so when families and friends share we can help to change attitudes, encourage systematic changes and influence the powers that be. I am happy to report the powers that be at the top here in NL right now, are committed to systematic change, they’re listening to those of us with lived experience and it seems to be working. One high ranking government official shared with us that they are still facing resistance to change from the medical community while implementing recommendations from the Towards Recovery Action Plan. If our professionals are having a hard time accepting the change then how can we expect all humans to do so.

Our present Minister of Health, Dr. John Haggie, has referred to Addictions as the “Cinderella” of mental illness. Unfortunately, we do not live in Disney World, we live in the real world. Although, it still gives me hope because even though she had to give up the façade and be home by midnight, she left something behind that allowed her Prince to find her and live happily ever after in the end. The glass slipper allowed him to find her again so she could be happy and loved as she should be. Our memories of who our loved ones really are, are our glass slippers, if we continue to hope and search for those people, they will return to us; out of a life they feel forced in to that is unjust and doesn’t really belong to them. We need to have hope, believe in peace and happiness and never stop searching for the person who fits in to that glass slipper.

After telling my son’s story yesterday I had couple of a twenty-year-old with similar struggles as Chris ask me how I have lived with all this for so long and be positive. We rolled our eyes at the normal, “one day at a time” …. then “joked” most days “are one hour at a time” or even minutes. I said “No bye, in my house it is just Radical Acceptance these days”. I think they thought I coined the term but I told them, “no it’s a real thing, just google it.” Radical acceptance is about accepting life on life’s terms and not resisting what you cannot change, about saying yes to your life just as it is. Hard…. yes…. but it certainly makes things easier when you can do it.

… but to the powers that be… this doesn’t mean I’m accepting things as they are in the “system” or giving up advocacy for change.

towardsrecoveryactionplan