A dose of dauntlessly dealt reality from the What It Is Wednesday Blog Carnival…
In December of last year I made a health tally, of sorts. Those of you who know me well know that I’ve dealt with a significant health condition for a long time. Those of you who know me really well knew me for the many years that condition went undiagnosed and witnessed the toll that road, let alone the condition, has taken. There’s an even smaller group, still, who know how that has transpired in the last 3 months, and it’s not good.
In May of this year, I had emergency surgery to remove uterine growths, which were revealed to be benign. That’s the really good part. The really bad part is that I’ve been in urological failure, ever since, specifically, my bladder has stopped functioning. Again, some will recall a similar event happened before when I was pregnant. In fact, it happened also when I was a teenager. The difference is, this time it’s for good.
No one’s exactly sure why this happened, or why it ever happened. The going assumption is that it was triggered by the trauma of the surgery, though urological, intestinal, and general pelvic floor failure are hallmarks of EDS. The bigger problem is that no one in North Carolina knows enough about it to state officially for the record that’s why this has happened. Few doctors, even specialists, know much about Ehlers-Danlos Syndrome.
I live in one of the most medically savvy communities in the world, and no love. Doctors are aware of it and they all openly cringe when I tell them that I have it, and what’s going on. Seriously–you’ve not seen the face of no options until you break such news to your GP and she puts her hand on yours to tell you she’s praying for you, or when you mention the word catheter to your Italian-suited neurosurgeon and his PA, then both visibly shudder and turn away–in unison. It was like they choreographed it. Observing the pros’ displays of discomfort with my condition and its symptoms has happened repeatedly over the last three months. It’s alarming, to say the least.
Their reaction isn’t for no reason. I can’t tell you the grief I’ve had over the revelation of organ death, and the vastly rippling impact it’s having and will continue to have on my personal and professional life, my plans, my dreams. It’s affected my day job. It’s complicated my ability to get health coverage, for life. I’ve parred down my practice hours, events, and commitments, again. It’s taken a huge toll on my family. I have to plan outings very carefully and I can’t even comprehend significant travel. It’s depressing, if I dwell on it.
The most difficult part, emotionally and psychologically, has been that I already deal with enough physical issues. I manage a high level of pain every day and have for years, so this is just one more thing. One more really hard, life-altering, every-day-challenging, thing.
No, I’m not dying–not from this, not right now, anyway–though it will take every wellbeing practice I know and can learn to stay sane and viable, from here on. People try to tell me to cheer up and look on the bright side–that I don’t have cancer–and I get that. I really do. But again, it’s said more to allay their discomfort of personalizing what I’m really dealing with, than it is to impart some long-honed coping strategy or support. That I didn’t ask for.
Silence really is okay.
Make no mistake, though. There has been a death. Probably a few, once I get perspective on it all.
It’s a tough one to explain to the kids. I have been seeing specialists constantly for months, which from their eight-year-old vantage point is quite hopeful. You go to the doctor; you get better. The first few weeks they regularly asked me if I was going to die. I assured them that I wasn’t, though that I wouldn’t get better, either. They don’t understand. Why should they? Every now and then I still see Maya waving her magick wand at me. When I ask what she’s doing, she’ll whisper, “Healliarmus,” as if to say it aloud will ruin the sorcery. She’s proud of having originated the spell. Tristan routinely checks in to ask if I’m still sick.
The upside to this is I have felt the most in my power that I have in my entire adulthood. There has been deep validation and healing, all the way back to a childhood sense of knowing something was wrong and having no explanation for any of it. There’s been very little dissociation, though much critical revelation of what’s sacred duty, and easing into a life of only What Must Be. In fact, I feel a great deal more at rest to just go with what feels right, and to adapt. There is no stay the same, anymore. It’s full on til needs met, and pretty much nothing less.
What’s nifty about devoting decades to learning mindfulness and holistic health techniques is that when you actually use them, they work. I am affirmed in the shamanic narrative, the healing story, that when you have walked the walk, people know it, and they are inspired to walk their own. When I say it works, I mean it; I don’t mind explaining how I know that.
Despite the glossy cover of the New Age, it’s never been my desire to pretend that shadow goes away just because you choose to walk a healing path, specifically when you commit to the role of shaman. Over the years I’ve had several people express to me that if I was a true shaman, I wouldn’t be sick. Huh. Good luck with that. I’ve never known a single “true shaman” who got a pass on adversity. In fact, the ones I know who walk it are carrying heavy shit. The difference is that because of their spirit relationships, they aren’t sunk by the load. Shamanism is a path of direct revelation and relationship, even with shadow. Especially with shadow.
Modern shamanism has romanticized the wounded healer, such that it’s perpetuated as you bring a trauma to the spirit world, heal it, you’re done, with it, and you get to be a shaman. No more wound. The way it really works is, you bring the soul of that wound into your life, and you find a way to live together. Maybe it can move on, once and for all. Most likely, it can’t, and you’re lucky if there’s only one. When you meet a shaman who understands that, you’re looking at someone who really sees you.
In all honesty, a year ago I’d have played the victim card, hard. I would have anguished why me and gotten stuck in anger and grief. I can’t clearly articulate why that hasn’t happened, except that I’m not that person anymore and this is good. My vision is clear, and my ability to say no finely honed.
So, what’s next? I’m not sure. My options in North Carolina are slim, and I’m in the lottery now to see if I will get into the Mayo Clinic. There’s no guarantee that I will, in which case I’ve got to originate a new plan. I’ve self-advocated in the medical arena for years, and that was nothing compared to what I’m up against, now. What’s on the table for consideration is a pacemaker, which would be implanted into my spine and take over bladder function. That, though, comes with some distinct disadvantages, such as no future MRIs, migration (in EDS folk), and increased infection risk and body pain. For someone who deals with a high level of pain all the time, the potential benefits may not be worth the risk. It’s definitely a choice of hells.
I don’t know what comes next. I’d love for there to be a clear avenue, a plan, with an outcome of measurable improvement. It could happen. It may not. I’m open to all possibilities.
Thank you for your thoughts, and to my Initiates, my Patreon folks, and my LJ community, for being so very receptive, holding space for me, and for listening. Thank you to my family for cheerleading and loving me through dark things. Thank you to Rob for putting up with so much, and always being exactly that one unnameable thing that I need, at any given time.
I’m in healliarmus reality. Tell me about yours.
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