Words by Mary Freer
Just the other day I had an email conversation with a valued colleague where I posed this question : Why should anyone bother to make a pledge for Change Day ? (You all know all about Change Day right ? ) Within moments a reply bounced back;
Because healthcare is vocational – everyone in health should wake up to do the best they can to make this place a better world. And there’s no better place to do this such as healthcare, because it’s sacred space. In our serving of others, we too are transformed. That’s why we make pledges – renewed everyday. Pledge day is a reminder of this.
Did you just stop for a moment and take a breath and say quietly to yourself “sacred space” ? I know when I read that the first time I stopped and sat very still and thought for a while about that space that we are invited into. We don’t have to be clinicians to be part of that sacred space. Have you ever been into a sacred space, maybe a church, a synagogue, a mosque or a gompa – maybe you took your shoes off, or covered your head or knelt down. You knew you were in a space that invited you to be the very best version of yourself and you wanted to be that person. You took up the invitation to acknowledge, in the words of Rumi, that you were not a drop in the ocean, you were the entire ocean in a drop.
I’m inviting you to take up this invitation when you step into the sacred space of healthcare.
Lately I’ve been interviewing people who have experienced the health system first hand over lengthy periods of time due to serious or chronic health issues. People who navigate the pathways of our not so ‘seamless and coordinated care system’. I will be posting quotes from these interview on the Change Day website to inspire clinicians to make pledges that put the person at the very centre of their care. In this blog I want to touch on a comment that Sandi made. Sandi is a mum to three boys, has been a registered nurse, social worker and advocate. Sandi’s second son was born in 1991, 8 weeks premature and spent the next 4 months in hospital. Here’s how Sandi describes Cameron’s medical diagnosis:
Cameron [Sandi’s son] was born with a complex cluster of unique differences which has meant that our lives have been intersected with the medical system since his arrival….when Cameron was 17 he started dialysis…
A complex cluster of unique differences.
I wanted to know what one single piece of advice Sandi would give to a new or emerging health professional. Here’s what she offered:
Try and walk in the shoes of the person you treat before you make assumptions about them and who they are, what they do and what they value. In all things be kind. If you have burnout it is time to take loving care of yourself, be kind to yourself before you care for someone else. Live your bliss, don’t just earn an income – people you care for know the difference.
I wondered if Sandi and Cameron had ever experienced the bureaucracy or the duplication in a way that has been difficult.
Low points most recently included a large public hospital refusing to allow one of Cameron’s family to stay with him on admission.
Cameron has little expressive language but good receptive language and when we are not standing alongside him things go wrong. People need to spend a long time with Cameron to understand what he is asking for or saying. The staff in the regional hospital were pleading with the hospital to let us stay but the rules were the rules. For me this was an act of discrimination, and ignorance of the fact that many, many people with a disability die while receiving health care (Six Lives). Bureaucracy does not comprehend that treating everyone the same does not mean you are not discriminating against a person or group. The concept of reasonable adjustments needs to enter the lexicon of health care systems. Until that time I will be the watcher and keeper of life for Cameron.
Another low point for Sandi was going to stay the night with Cameron when he was a baby and finding a nurse had stuffed a face washer tight against a dummy so he could not cry, and she would not need to tend to him. This memory remains strong for Sandi, a warning bell that keeps her vigilant to this day.
Finding out that Cameron was being used for research and not being asked to consent was another. Being told to walk away from Cameron, put him in an institution and forget that he was born was another. The low expectations for Cameron as a child have always stuck with me and the fact that he was never tied to these medically imposed limitations and has done life his way. He has been a fantastic educator.
“We don’t need to shift our responsibilities onto the shoulders of some deified Spiritual Superman, or sit around and wait for Fate to come knocking at the door. We simply need to believe in the power that’s within us, and use it. When we do that, and stop imitating others and competing against them, things begin to work for us.”
Benjamin Hoff, The Tao of Pooh
Just like Cameron we too can can make a decision not to limit ourselves. On this day as the world begins to understand the magnitude of the loss of Nelson Mandela I am reminded of the beautiful quote that is often erroneously attributed to him.
Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us. We ask ourselves, Who am I to be brilliant, gorgeous, talented, and fabulous? Actually, who are you not to be? You are a child of God. Your playing small does not serve the world. There is nothing enlightened about shrinking so that other people will not feel insecure around you. We are all meant to shine, as children do. We were born to make manifest the glory of God that is within us. It is not just in some of us; it is in everyone and as we let our own light shine, we unconsciously give others permission to do the same. As we are liberated from our own fear, our presence automatically liberates others. Marianne Williamson
(Now might be just the right moment to visit Change Day and make your pledge.)