Grey
I’ve started writing throughout the week, a few times, a thread, a few lines here and there. I’ve been carrying around some frustration because I’ve known what I want to write about but it hasn’t flowed. It hasn’t come together or become anything ready or complete. The frustration doesn’t help, it stops the flow, scares it away but the trusting, the allowing, the letting what comes come and knowing that when it is ready it will all come through in its complete form, the trusting is hard. At times it’s harder than others and right now it feels heavy, with so many pieces starting to come together, all the heavy pieces are just here in my space, in my mind and my energy. They’re buzzing around, bumping into each other, vying for my attention. The frustration comes with knowing that once I am able to put them all together, get them on a page and close the book or hit publish then the weight of them goes. The weight of them can then sit in the piece and I can have my space back, to be here in the moment, to respond to what is, to move forward into the next thing.
It started with a moment early in the week when I suddenly felt ready. I hadn’t known that I would until the moment that I did and it surprised me to feel a weight lift and a relief descend. ‘We’ll be ok either way’ became real and tangible where it had up until that point been a hope and a prayer. I’d spent the afternoon listening and learning, putting together some puzzle pieces and sitting with some answers to some of my questions. Listening to an Integrative Pediatrician who, like me, has been trained and educated in both worlds of healthcare and decided to anchor herself in the overlap. I’ve been looking for someone like her since long before I went back to study myself. The one or two I was able to find in Australia almost a decade ago were in such high demand that we couldn’t afford an initial appointment let alone the testing and treatments that would follow without any subsidy. At that point phone consults were possible but not encouraged or ideal for the thorough assessment required.
Today the online space has opened up in a way that has allowed and encouraged practitioners to adapt and to create innovative new ways to support their patients. I can now join thousands of other patients/parents to be educated and advised by a specialist doctor and she can deliver her knowledge to all of us, all over the world at one time. We can get the background information that we need to be able to get the healthcare we need. We can all hear the research and data she has spent hours working through and her clinical experiences and expertise and because she can present it just once she has the time to do that. It’s different, it’s adaptation, it’s evolution and it has allowed me to find the answers to my questions, the ones I could never get in a fifteen minute GP consult or even a Pediatrician appointment.
I’ve sat in front of three Paediatricians in the past nine years. The first two had absolutely nothing for me, back when my LW was a toddler and we were struggling. He’s fine, some kids just don’t sleep, there’s nothing we can do. The third, much more recently, when I had gathered the courage to try again and take everything that I had found for myself over the years, she thought it best to stop me, tell me none of that was real and couldn’t possibly be related before telling me there was nothing to be done, nothing she could or would do about the third unexplained collapse/seizure my LW had experienced.
It’s just a lot of the same really, frustration turns to infuriation at times because even when I’ve unraveled what they wouldn’t, even when I’ve seen the improvements and results with my very eyes there is denial, from the people and the system that I am supposed to trust, that any of it could possibly have happened. How can I trust them now with this? With keeping us safe and healthy in a Pandemic, with having our best interests even on the table, with making sure that my family and others like us don’t become collateral damage that just needs to be accepted for the greater good? When the very thing that puts us at greater risk of adverse reactions and long term negative impacts is denied and ignored by them?
So I don’t trust them with this, I also don’t fight them anymore. I sit and I stay in the grey area, in the overlap, where I can be a nurse and also use more than just medicine to look after my health. Where I can read the science and also stay curious and pick it apart. Where I can listen to the recommendations and know that one size never fits all. The ‘one size fits most’ approach being rolled out, presented, offered is great and it’s saving many lives. It’s great if you fit into the ‘most’ category and even perhaps if you don’t know where you might fit. In that case ‘chances are it’ll be fine’ is a valid way to go about it. If you know that where you fit is outside of ‘most’ from past experience, from past medical and health history then how can you be expected and coerced into just doing it anyway? The only reason I can fathom for expecting people to do this is it’s easier more convenient, cheaper and saves time. Expecting people to allow their health to be collateral damage here for convenience?
People with questions feel they’re being ignored, people protesting feel they’ve been brushed aside, people fighting feel they’ll be thrown under the bus for the greater good if they don’t. Many of the people saying no, no way, not ever have stories that would bring you to your knees. Others are supporting people they love who have these stories.
The governments and systems handling this pandemic are parents at the dinner table and these hurting people are their children. These governments have been sitting at the table with their children saying sit down, shut up, I don’t want to hear from you, you will do as I say, I’m doing this for your own good. Sitting there threatening to hit harder and harder and harder until these children break. Sitting there bribing the siblings who have complied and obeyed with sweets so that they might taunt, threaten and coerce the others.
It’s disgusting behaviour. Pandemic or no pandemic.
They’re teachers standing in front of classrooms of these hurting people saying put your hand down, there’s no question time, you will all sit quietly and deal with it, nobody will get any additional help or accommodation.
It’s not how we do things anymore. We know better than this now, we do better than this now. We are better than this. We have choices here. We can choose not to support or accept this behaviour. We can choose, as health professionals and as human beings, to hear the people with stories and questions, to support them to work through their fears and concerns, to find their answers and to find their peace.
I’ve found mine. Once again, I’ve had to fight to find it. Not fight anyone or anything but fight the barriers, the brick walls, fight my own inner battles, fight to stay steady and clear as the world has been shaking, quaking and screaming in my ears. To find the answers to my questions, I had to hold tight to them while other peoples’ questions and answers swirled around in my space trying to hit me in the face. None of their answers were what I needed and none of their questions could help me to find what I did need.
What I needed, what I’ve always needed is to understand what dis-ease in my child and myself was trying to tell us, is to find the tools that could help me to hear those messages and decipher them and to be able to unravel them rather than cover them or drown them out. I’m doing the same thing here. It’s been just as difficult and intense this past eighteen months as the eight years before. I’ve had the tools, I’ve had the experience and practice behind me to stay steady through it but the resistance and the bumps I’ve faced have been building in size and strength, the tide I’ve been swimming against has grown exponentially.
‘Is this really the only way?’ The first question I wrestle with. In my mind the answer is no. In my mind all of the money, time, expertise and manpower could be directed differently. It could be directed into a more sustainable approach, into an unravelling rather than a stamping out. It could definitely be different if the people directing this ship saw health differently and saw the world differently. But they don’t and I’m not sure they ever will.
So if my answer to my first question is no but their answer will always be yes then my question becomes ‘How can I keep us safe through this?’ The question can be the same for all of us but the answers will all be different. We’ll all do the best we can with what we have. I’ll use what I’ve learned, I’ll unravel the parts that I have choice in. By using what I know would keep us as safe as possible and as able to survive the virus as we can be to keep us as safe as possible and as able to survive the recommended treatments as possible for now. I have what I need and rather than put all of my energy into fighting, I’ll use what I have.
Do I still disagree with the way some of this is unfolding and the way people are being treated? Yes. Do I still have hope that things will change direction before the next virus appears and we’re back to being helpless and scrambling for the right combination to inject? Yes. Do I feel frustrated and upset for those who have and will be collateral damage in all of this? Yes.
However, I’m here and I’m doing the best I can with what I have. The best I can not to add to the fear, the fight, the damage. I’m here living it all out loud, wading my way through, sharing my story in real time. It’s what I’ve done since the beginning of LW’s, sharing the grey area of having no diagnosis, no help from the system but still working towards improving our challenges day by day. This is kind of the same. We don’t have a team in this, a side to stand on or with as we walk forward. We’re standing in the overlap, in the grey area where all we can do is our best to know our needs, find our own answers and be open to hear and love others who also have needs and questions that don’t fit within the ‘most’ box.
