Intuitive Art Making; healing through creative expression

Often when feelings are churning inside of me, I turn to something creative to help me release them. Well, today I’ve been struggling with all that needs to be done with Jess’ work, and making a conscious effort at taking a break from that work, knowing I needed a break. But…

2014-02-03 20.22.49And as I sat at the table, I pulled on my training in art therapy. I worked a little call and response of dominant and non-dominant hand. For example, you write a question in your dominant hand, and ask that the little one inside of you to answer, writing that answer in your non-dominant hand. Sounds a little hokey, but can produce the most amazing results! But I didn’t get very far.

I knew I didn’t want to work with color, these feelings just were’t colourful. So, I flipped the paper over and just started writing down all the feelings I was experiencing over the past few days; heavy, dull, unproductive, frustrated, stuck, spinning my wheels. I started to run lines around the words with a soft pencil, and this gave way to wider, more sweeping strokes. I then moved on to use charcoal. And if you’ve ever worked with charcoal, you know what happened next; I had a big, fat mess of black dust all over the page, all over the table, and all over my hands. But it felt really good!

I was then moved to crumple up the whole mess! And really, that’s what I felt like; a black, messy, overwhelmed, unproductive, heavy, crumpled ball. I sat with these feelings 2014-02-03 20.29.02for awhile. Just sat, sat until I was comfortable with them. It seemed to me I was then moved to open up the crumpled mess, and from some scraps of paper sitting near by, I wrote my feelings out and tossed them into the ‘bowl’ of crumpled, blackened paper.

And I realized the form of the bowl was strong enough to hold my strongest feelings. I sat awhile again, just sat. I had transferred my feelings from within me, to the safety of this vessel. And it struck me; my feelings didn’t seems so overwhelming sitting there in that paper bowl, sitting outside of myself. And I smiled.

2014-02-03 20.29.24 2014-02-03 20.29.15

If I’m honest, really honest (part 2)

DSC04079 2In the last post, I admitted that my fight to help bring about changes for safer healthcare is,  at times, driven by anger and the need to be heard by those who turn away when I speak. And now that I’ve said it out loud, it somehow feels more contained.

But just as I start to feel comfortable with this, the anger takes me in a different direction, one I feel the need to hide. This whole situation of Jess’ death often robs me of myself, of me from my family and of the things I love to do. This fight, this honouring, takes up such a big part of my life. And just as I begin an unrelated project, its presence stands off to my right, just out of sight, tugging on my sleeve like a pestering child. For there is a certain amount of shame in admitting I’m not just mad at the whole situation, I’m sometimes even a little bit mad at her and what she requires of me. Oh, I don’t like the way this feels… I don’t want to fail her, but there are times I resent the mind-space her death and this fight occupies. Sometimes.

But I need to remember, that just as in life, there were times she annoyed me (and she had a knack for that!), not once in all of her 17 years, did I ever stop loving her. And this has not changed, even in death.

If I’m honest, really honest

Jess’ work had kept me busy during the fall and the run up to Christmas. It always comes in fits and starts, giving me a reprieve before the next onslaught. It’s taken awhile now into the New Year to get me going again, other important things have ‘squeaked’ their way to my attention, and have kept me happily occupied. But her work still sits, and I have become at once both the pursuer and the avoidant.

This question begs to be answered; in being invited to the table with the patient safety folks from both of the health systems responsible for Jess’ ill-fated care, was my goal to help fix a post-error system or was it to have them finally fucking hear me? And if I’m truthful, a little bit of both.

But if I’m honest, really honest (and here’s where I lower my voice), I think it might be more the latter. And it’s with this revelation I begin to understand that it is safer to show the world a focused and determined advocate (and I am). But what I also am (at times), is a mother with an intense anger at a culture that sees protecting its own often more important than those they unintentionally bruise, harm, take, through their arrogance, their incompetence, their complacency. And I think, God help us all…

This part of me doesn’t show itself often, and although it occupies a small place in my heart, it is real. And I grudgingly accept, it’s part of what propels me forward. I am a focused, determined patient safety advocate who, at times, is angry.

There’s work to be done, her work, says the pursuer. And the avoidant… well, avoids! I’m so tired of the space this part of my life rents in my mind, in my heart. Move over, give me some room here, I yell at it! No one would blame me for taking a break, “she’s so altruistic” (am not!). But really there’s only one person who’s opinion matters to me.

And I’m just so tired of it all right now, Jess.

Reality. It’s always relative.

Don’t tell me to stop worrying, unless you’ve stood awhile in my shoes. It frustrates me when others tell me I worry too much about my family’s safety. And my fear is justified. These people live with a luxury I am not afforded; living children. So, the next time your brain is ready to spout something insensitive, pause for a moment, and let your heart lead. Let it give understanding born of empathy, leaving judgement and ignorance at the door.  And I, if needed, will regift in kind.

PS. She did make it safely to the airport (big sigh)

Potential is there, but will it be realized?

Nova Scotia’s new Medical Mistakes Registry will be up and running shortly, and my first thought is great! But my second thought is, although the potential to bring safer care to Nova Scotians is there, will it deliver? While I agree that this tool could help spot wider trends, as well as institutional ones, create improvements that deliver safer healthcare, I still have a lot of questions. A big shout out of thanks goes to my fellow patient safety advocates from Patients For Patient Safety Canada  in helping to ask just the right questions. If you’d like to add a question to this list, your help would be most welcome!

  • Will a standard definition of adverse event be used or will the 9 Nova Scotia health authorities continue to use their own definition?
  • Were all the relevant stakeholders (patients included) at the decision-making table to design/purchase of this IT tool?
  • Are registry staff fully qualified to input, review, spot trends, make recommendations, and seek implementation of changes that arise from interpreted data?
  • In other provincial medical error registries, the patient is not allowed to report adverse events directly. Who will be able to report medical harm for this registry?
  • Will the registry have the ability to differentiate between problematic systems as well as individual clinicians?
  • Will the registry categorize medical errors, as well as rank the severity of harm?
  • What criteria of the adverse event is needed to precipitate change?
  • Has the registry been tested with real case studies to gauge effectiveness?
  • How will the data be interpreted, and will the province have the authority to implement needed changes to create safer care?
  • Will the registry be looking at ‘near misses’, ‘good catches’, injuries and all expected and unexpected deaths?
  • How will the registry impact the review/investigation process after the error in institutions?
  • How will misdiagnosis be picked up in this type of system?
  • Will the registry include mental health adverse events as well?
  • Is the registry compiling data according to global standards?
  • Will the ’12-hour’ window for reporting adverse events circumvent human tendency to individually or collectively decide what is worthy of reporting?
  • Although data collection around adverse events is important, will equal, if not more, emphasis be placed on timely and empathic disclosure to patients and families?
  • Will there be measures in place to gauge the impact of introduced changes to systems and individual practice?
  • How accurate will the data collection be with a medical culture that does not fully embrace transparency and learning potential around adverse events?
  • Will information gathered by the registry be made public?

Collecting data doesn’t make healthcare safer, it’s what is done with that data that does. I’m hoping this is not just a ‘feel good’ political initiative to appease the public and promote trust in a system without thorough checks and balances. Let’s hope that this system will help prevent other families from living with the pain of losing a child to a preventable medical mistake, as our family has.

I’d like extend an invitation to Nova Scotia’s Health Minister Leo Glavine, and discuss the best way to keep loved ones safe in the loving arms of their families. And perhaps my interview this morning with Global News will garner his acceptance.

Link to my Global News interview

Work + Rest + Recharge = Balance

Advocacy comes with a price. For all the visible work you see, the articles, videos and engagement with healthcare, there is an invisible force that exacts is toll on my health, both physical and emotional. I feel honoured to spend so much time with Jess in her work, but there are times (and I know she’d be the first to encourage me!) when I need to set the work down and go play for a while, to come back energized and ready to push forward. I need to do this, not only for myself, but for my family this side of heaven.