Where to begin. What do I want my blog to be about now as I move away from HSCT? I’m still tracking my body, I still have MS, I’m still resolving SIBO. But more than anything, I want to begin to write something comprehensive, cohesive, impactful perhaps.
Where am I sitting right now? I’m thinking of this journey, this writing journey, as a description of healing the body in a society that doesn’t look at factors of healing other than allopathic medications and interventions. When allopathic medicine runs out of answers, then what?
I’m looking at healing my spirit, healing trauma, healing relationships; caretaking little molecules of discord that circulate in the body, intercept with cells, and ask them to work harder and dance out of step with their intentional way of being in the body.
I’m writing about healing from all angles with the curiosity of what is possible. I’m also navigating my own relationship between logic and reason and spiritual seeking. Though I don’t feel totally comfortable with that word, spiritual. Holistic seeking perhaps – ways of looking at healing that aren’t always explainable, don’t have evidence-based research papers, don’t get the validity in the world of science. A way of exploring healing that asks for the word surrender, letting go of the reins, giving up the belief that I have control.
I have no doubt that one connection as it relates to healing and health between the emotional world, the psychospiritual world, and the physical anatomical world, is the pressure of stress. That makes sense to me.
But can you unravel stress? Can you go back in time, take that DeLorean back to the future? Is it possible to find the initial threat(s), trace the breadcrumbs back through time to the origins of things? Does it ultimately even matter? I think that is my question, what I’m wondering.
I’m looking to poetry, to counseling, to naturopathic medicine, to psylocibin and psychedelics to learn more about my origin story. I am exploring psylocibin micro dosing to see what is possible there. The brain has the capacity to bind and connect psychedelics with evidence-based research into medicinal mushrooms other than psylocibin – open the brain through psylocibin, and then let the molecules of other fungi in to help build new neuronal pathways.
What I’m seeking is healing. What that means I am uncertain about. On one level, I want healing to mean everything. Full complete restoration of body, a return to the place I started where I could dance, climb, work hard, contribute physically.
At the same time, I’m wondering if healing is coming to a place of wholeness within acceptance of what is – living inside this body, the way it functions, the way it moves, the way it has limits, and still feel alive, full, and whole.
And maybe it’s somewhere in between. Maybe there’s a way that the work – the digging, the origin story search – finds some recuperation of lost function to the point where there is a balance place where I can live with less grief and loss.
Perhaps it is living inside and through the grief that offers a doorway, a window, a portal – an opening to something new – something that I cannot control, plan for, or orchestrate with the tools I currently have.
I have been thinking about the muscles I have developed to cope with this world. The strongest, most developed, is the muscle of competence. I can get things done, I can keep track of things, I can pay the bills, I can make the appointments, I can keep moving forward and keep all the ducks in a row, I can keep the ducks of others in a row – competence, I’m a bag holder.
I have the muscle of articulateness, the ability to use words spoken and written, in ways that others comment on, commend me for, admire me for.
I am a doer and a communicator.
So, what does that leave? Which muscles are atrophied? The muscle to live wholeheartedly, to be open enough to risk being wounded and hurt. The muscle to speak honestly and clearly in the face of fear of rejection and disappointing others. The muscle to be my own voice, not the voice of appeasement and smoothing things over.
The muscle of joy is weak as well. The muscle of being open to and experiencing joy and delight. The muscle of feeling tickled, giggly, silly, playful, messy, childlike – open to awe and wonder.
Where does that leave me in something like this, a blog post to others? It leaves me a human living with MS, wanting to share that story, but not wanting it to be the whole story of either this blog or of my life. I do not want to dwell here, I do not want to live here. I want to live in a house with more furniture than that. I don’t want the story of MS to be the walls of the house, that’s too much space for it to take up, too much structural integrity. I’m not even sure it is a piece of furniture. I think it’s a roommate, one that is sometimes an ally and sometimes an antagonist.
I want to describe my experience of living with MS and how it fits into the picture, but I don’t want to tell the story as if MS is everything, and I don’t want to live as if MS is everything. I want to find the proper place and space for it in my life. I can’t ignore it, ignoring it is as dangerous as letting it take up the whole space. What is the balance? I think the balance shifts depending on the day, depending on the degree that it is shouting or the degree that it is in the background. That is the snowflake nature MS, it is not a constant it is always changing, always elusive, always here, but not always loud.
So, if you are patient with me and interested in this story in all its shapes and sizes, I thank you for sticking with me.
As I’m sitting here now, today I seem to have found a good mix of medications and movement. SIBO appears to be abating, I feel stronger. That’s the story right now. If I were to try and do a blog post every two weeks, it would be stories like this. Where am I now? What am I learning? What am I integrating? Where is my grief? Where is my joy? Where is my deeper connection to life? How do I celebrate? How do I build and contribute? How do I connect.
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I wrote this post almost a month ago. I then went through a very dark time related to SIBO and finally getting COVID after avoiding it for almost 3 years. I have come out the other side of that tunnel and am back at this place as I described above. I have decided not to go into detail about that journey because I don’t see the point in reliving it. I say this only to explain how long it is taking me to create this post.