top of page

The Art of Being -Cancer Journal- November 12, 2021 - A Name for My Pain

The vision for the HeARTH/DMG website is that it becomes a hub for community. My hope is that those who wander this way can find some connection, understanding, peace and everyday wisdom through their interaction. I know that a personal connection is important in marketing and creating that sense of community, belonging, and engagement that is required to move the vision of HeARTh and DMG forward. Deborah Gregson

Regarding my cancer. A meeting with the surgeon has resulted in a request for a biopsy of a lymph node they don’t like the look of. The results of this will determine next steps in treatment. It should have been done last week when I was in my “turbo diagnostic appointment,” (I have never seen that fast of a process in my experience with the medical system) but I balked at something else they planned to do and they stopped at the tumour. Now it has to be done a week later. So I am kicking myself a bit. More waiting and wondering. More regrets and self-forgiveness work. More patience and applied faith. The struggle is real.

This week has been interesting. I remember when my Dad was diagnosed with Parkinson’s, how it seemed like something changed in him, like he had given himself over to the illness after so long of seemingly functioning just fine. I wanted to scream at him, “Nothing has changed from yesterday to today!” Now I think I know how he felt. Like maybe he had permission at last to be as worn down as he felt by this unknown thing he had been struggling with for so long.

All of the exhaustion, nausea, pains, just not feeling quite right that I have felt increasingly but ignored and pushed past are so pronounced in my new awareness and I want to listen to them, I need to listen to them. But I am also wondering how much is just my brain, now with “a name for my pain,” telling me I am sick and need to slow down and surrender. I don’t want to surrender, I want to push back. But I know there will be a balance required. I don’t know enough yet about what is going on and to what extent to know “Is this is me or the diagnosis?”

My stress level has increased exponentially and I know enough about physiology to know that it is wreaking havoc on my body systems. Right now the medical attention I am getting is only focused on one part of me. One aspect of my health. But there are things long going on in other parts of me that may be related, contributing, or being contributed to by this BIG thing that seems to have everyone’s attention at the moment. But only one body part or problem is focused on at one time, even though I am in there with two lumps in two different places.

How much of what I am experiencing is just stress? Working too hard for too long and having adrenal struggles? Potentially inherited health issues? Or cancer riddling through my body? The fear is real. But regardless, my body systems are not functioning within normal parameters and are screaming for change. I need knowledge, assurances, and insight. But also I do need to listen. In the stages of change where my health is concerned, I have moved from precontemplation, on a plateau where I was content to put up with the status quo, ignoring the signs in favour of other priorities, into contemplation. The cost for staying the same is too much to bear and the effort to make changes is less than the effort of dealing with the consequences of inaction. I have a name for my pain. So now what? It is time to move forward again, in this area of my life, Learn, prepare, do. Understand what I can, gather resources, both internal and external, and move forward in the ways I can to prepare the way for greater ability for more sustainable change. So now what? I have been here before.

I remember, way back when, before I was diagnosed with a mental illness, the frustration and confusion for myself and my loved ones, when I just wasn’t functioning within “normal” parameters. My husband, finally, after all the traumatic rollercoastering, and upon hearing something on a talk show about PMS, gave me a pad of paper and a pencil and said, write everything down and we will talk about this when I get home from work. It was a start. Later, I had a friend who told me, normal people don’t feel like this. And looking back, over the years, other comments from others in my life that, if I had a clue, would have clued me in sooner to what my actual problem was. Bringing a list from the top of my head to the bottom of my toes to the doctor brought a diagnosis I could start with, at the very least. Although putting the pieces together and making holistic changes was still up to me and not part of the professional rhetoric at the time. I am not sure how much that has changed over the ensuing two and a half decades. And I still had to and continue to have to pose the question, “is this me, or my diagnosis?” But I had a start. I had a name for my pain.

With each “layer” of information or awareness came, maybe not the whole picture, but at least something more to work with. And work I did. To understand what was going on for me, and always with the question: “So now what?” What am I going to do, that I can do, right now, to either live with whatever I can’t change, or remove it from my life altogether? Shifts happened for me. And everything I did would eliminate or mitigate something and(usually)/or help increase my resources to tackle the next layer of information and awareness (for example cleaning up my diet, finding nutritional supplements that could help, even medication at one point, self-talk, mindfulness). A holistic approach of looking at all aspects of my life and doing what I could in each one of them. Just making different choices. Doing what I could, from where I was at, with what I had. The more I did the better equipped I was for next steps. The more I learned about what was happening to me the better I was able to hop into the Stages of Change cycle for another round.

My vision and passion for what I do now in my career came from those days. I have learned that I am a seeker of wisdom, a vision holder and a mover and shaker. Learn, prepare, do, and help make things better for others. As a strongly empathic and compassionate person, my personality set makes this so. Little by little, layer by layer I have added to my own arsenal of knowledge, understanding and wisdom about mental health, life, and overcoming, and shared what I knew, in different ways, with others. Writing and producing songs about my healing journey, doing presentations, joining with a not for profit and helping it grow into a charity to enact a vision of connected community and healing places.

Opportunities for schooling in psychology opened up, and I realized that rather than being a one to one counselor, I wanted to focus on the systems people had to go back out into. I did some volunteering and ended up on a not for profit board, followed by a move into running that organization. None of this done alone, but that is another blog. Through that experience and subsequent funded research, I learned first hand the name for our pain. Systemic dysfunction and disconnect. In general, we humans are disconnected from the land, disconnected from each other on a personal level, disconnected across sectors, and honestly, often disconnected from our own selves. And unresolved trauma has a lot, if not all, to do with it.

I also learned how difficult it is to change a system from the inside, and that (15 years ago and counting) many people for many years have felt the same way, have seen the same things I was seeing, and nothing much had changed (but stay tuned for another blog post on this -Drop by Drop). Through my involvement in community development, and in efforts to make lasting changes I have observed a dearth and/or disconnect in leadership and coordination for the changes that needed to be made, on a community level. And resources in the wrong hands, or unevenly allocated. There are better ways of being, of doing.

Eight years ago, I found myself in a position to start my own organization to help share the vision of a better way of doing community. Our systems are not functioning adequately. We need knowledge, assurances, and insight. But we also need to listen, be mindful and look at the whole picture. In the stages of change where community is concerned, we seem to have moved from precontemplation, on a plateau, where we were content to put up with the status quo, ignoring the signs in favour of other priorities, into contemplation, and even on some levels preparation. Shifts ARE happening. But so slowly it is often hard to see them until we look back. The cost for staying the same is too much to bear and the effort to make changes is less than the effort of dealing with the consequences of inaction. We have a name for our pain. So now what? It is time to move forward. Learn, prepare, do. Understand what we can, gather resources, both internal and external, and move forward in the ways we can to prepare the way for greater ability for more sustainable change. So now what? I have been here before. As I have watched my community since the start of my involvement, I have seen some of those ideas take root and be implemented, even though it may be disjointed and awkward, and start to bear some fruit.

In health, mental health, or community, the next easy thing is always there, within our grasp. Each thing we do eliminates or mitigates something, and increases resources for the next layer of awareness and attention. Experience has taught me that external forces create pressure that leads to internal motivation to make the changes that need to be made, and that may be indicated internally, but are not being addressed. Both of these two pressures are required and work together to get us over the threshold of each stage of change. HeARTh and DMG have emerged out of this need. We want to build momentum and gather community as well as resources from outside of the “system.” Mindful listening, systems savvy and coordinated, cross sector planning. To meet needs, mitigate problems, break cycles, and build sustainability for the future. To show how community can be and is being done differently. To create some pressure, from the outside, to inspire and equip the inside to adjust to the new course of things. This is how systemic change happens, from the grassroots up. For body, mind, or community. They are all systems. And they are all connected to each other.

103 views0 comments


bottom of page