Hanging In There

August 21, 2014 at 1:42 pm (Disability, Living, Living With Chronic Illness, Mental Health, Spiritual) (, , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , )

If you’ve ever had any kind of conversation with me, regardless of the medium, there is an incredibly high probability that when you’ve asked some version of “How are you doing?” I have responded with my fallback, favorite, non-pessimistic, doesn’t-drag-you-into-a-conversation-you-didn’t-want-to-have response:

“I’m hanging in there.”

Those who get to know me more intimately hear that phrase so often it begins to lack meaning. Or they’ll see a twinge, a wink, a deep exhalation; something to cue the listener to the “where” I might be “hanging in”.

I learned at a party four years ago that “How are you, really?”, can easily be mistaken for “I know you had a medical ‘thing’ recently; please tell me how miraculous your healing has been so I can feel good about the world.” I know some people actually mean “I read your blog and I have a general sense of the technical side of what’s not working for you; we’d just like some secret stuff not shared on the blog and I know some pretty awesome doctors who treat Ginger Cancer*.” But once the gathering gets past the awkward social niceties, no one is sure what the next step should be. (If you’re roleplaying 1950, I believe it is to take his hat and coat and usher him into the downstairs sitting/crochet/wielding/welding/spelling correction room while asking him about coffee preferences.)

Sometimes people really do want to know how I’m feeling, generally or right in the moment. Maybe they read this blog and want to hear some of the wacky stories straight from my mouth, or they want to ask questions about things I’ve written.

And sometimes people are super grateful when I answer with something so non-committal, so they can skip past the whole ‘Del’s life is hard’ part and get straight to the “Do you want to go catch frogs with me?” mode. Or just about any other question or conversation or activity.

People are correct that when I go to a party or fun gatherings or even just have you over for hangouts, that I am both of the following at the same time:

  • Totally willing to answer any questions or share any details about my medical journey. Remember, that’s what Baphomet said in the beginning of all this, was to share my experiences as far and wide as I can.
  • Sick and fucking tired of every conversation I have with any human being on the planet is somehow related to me being sick, disabled, or in pain. I want to pretend for an hour or three that I’m just an average ordinary Joe doing ordinary Joe things like going to the movies or setting my friends on fire. Y’know, stuff that just happens every day.

I have been getting MUCH better at setting and supporting boundaries around these things, including being totally willing to withdraw into my bedroom if we are hanging out and I’m starting to feel weak, tired, in pain, etc. I warn people before they visit that it will happen, and sometimes it happens for the majority of a visit, and sometimes it was just during the most critical moments of why they came to see me. But there’s nothing I can do about that, so I accept it and move on.

Too Intimidating?

Another social thing I’ve been trying to figure out lately is that many people think of me as being intimidating. I think the first time someone brought this to my attention was a wonderfully powerful and bodily petite Priestess. We had been to a lot of the same events and such, and when necessary we’ve have fun and interesting but politely distant social contact. I couldn’t really tell if she liked me as a person, or if she was being respectful of my experience while secretly disagreeing with any one of my many unusual beliefs or practices, or if she just thought I smelled funny.

Anyway, said Priestess comes striding into my cabin during a camping event, and sits on the edge of my bed. “Del,” I paraphrased, “I am done being intimidated by you.

This is the sort of thing I hear a lot. People saying that they read something I wrote or went to one of my classes or saw me at a party but couldn’t approach because I am intimidating. It baffles me, as I try to be open and warm and friendly, even though I am introverted down to the remnants of my toenails. But it’s a perception, and all I can do to change perception to be reliably un-intimidating (whatever that looks like).

I mean, it’s nothing like what you’re going through…

People are sometimes afraid to talk to me, especially about wellness-related issues, because they’re afraid that being worried/upset/tired/challenged with their health situation when compared to whatever they perceive I’m going through.

What you don’t see is how that reflects on me. Here are some of the things I hear between the lines when people say things like this:

  • You’re so much sicker/weaker/poorer off than I, so much so it’s only okay to talk about your struggles all the time.
  • You’re never going to take my struggles seriously because yours are so much bigger and more threatening than mine,
  • You are so, so ill that even a simple conversation causes you pain, so instead I will only engage in flighty small talk with you.

I’m sure you get my drift.

Now, this is not an invitation to grill me further the next time I tell you I’m “hanging in there”. Sometimes I really do need a little pushing to open up about things, partially because I find myself telling the same stories over and over again (Baphomet sorta promised me this blog would stop that from happening), and partially because I don’t want to waste the 20 minutes of face time I’m going to get with you at the party/gathering/concert/event to be all about my blood sugar numbers and my O2 sats.
I also have a hard time telling who really wants to hear every single detail about what tests I’ve had and what they’ve shown and who all the “charming players” there are (I not-so-secretly nickname most of my doctors and nurses, especially if there are ones that stand out screaming for one. This trip to JH has given us several – Nurses Anxious, Snake, and Afro; Doctors Bopper, Blondie, and Randomly In Charge; even techs like Pocket Fairy and New Best Friend. In fact, I’ve been asked to come up with a new cast of characters and why they got the nicknames they did, so I’m going to end this post a little prematurely so I can take a break and then tackle that. The next post will also likely have much bigger updates as to what’s going on and why I’m not discharged yet…

….and I just may have found my Zebra hunters. Oh yes, another nickname. The “Zebra” thing comes from an old medical school saying – “When you hear hoofbeats, think horses, not zebras.”

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Remote Support for the Surgery, Part 1

December 25, 2012 at 12:45 am (Living, Spiritual, The Panniculectomy) (, , , , , , , , , , , , , , , , , )

There are two things happening to me on the 28th; on this side of the veil, I’m going through the physical act of having a risky surgery. On the other, I’m going to be facing a challenge about whether or not I really value this body and life I have been given, and whether or not I am willing to commit to making my Job my first and most important priority. (And for my community and family of choice, the second part is about committing to being of assistance and support in helping me do what I need to do, as well.)

Because these are two fairly different goals (surviving the surgery vs being able to move forward doing my Job), I’ve asked two separate priests to construct rituals/visualizations that people can participate in. These are the same visualizations that will be lead in the hotel room we’re calling home base during the surgery, and it will be happening around 10am that day.

Part 1, written by my friend Raven, is for those who feel more comfortable sending energy and Will towards making sure my body survives the surgery. She asks that you use this bindrune as a focus:
bindrune

This is what she writes:

Restoring The Temple

Basically, We are focused on strengthening the body to endure and survive the surgery, and helping
create the best “vehicle” for Del to continue on with his life in. We are the team who had found the
rundown temple/humfour/peristyle/stone circle/church, and wish to restore it to functional sacred
service.

The sacred structure must be cleansed. That which is harmful or rotted must be removed, and the
structure must be repaired and shored up.. it must be made strong so that it can endure and last to fulfill it’s purpose. It must be solidified, from the ground up… made free of what does not belong, and made ready to receive back its spirit.

Whatever faith-path one practices, the idea of a place that is sacred is not an alien one… it gives us something communal to work together on.

When I built the bindrune, my partner, looking over my shoulder, said “That looks like scaffolding”, and
when he did I knew I had gotten it right. The bindrune can be carved into a candle, inscribed with ink,
drawn with chalk, or merely held in mind.

A word of caution to those who may not be familiar with bindrunes:
Please do not ADD other symbols to this bindrune. If you wish to use other symbols as additional foci, like pentacles, crosses, veve, etc, have that symbol separate from the bindrune. Adding to a bindrune can “accidently” add in runes you did not intend, so of which might be at cross-purposes to this working.

In addition, I wrote some elemental correspondences for the various challenges I face during the surgery and recovery:

1. My heart. (fire) I tend to have low blood pressure when I lay down, and even slower when under sedation. I need it to beat strongly and regularly, but not so strong as to cause excessive bleeding.

2. My lungs/breathing. (air). I have sleep apnea, and also laying flat on my back makes it very difficult for me to take deep breaths. Also I have a mass in my lung, and there’s some concern it could cause a blockage at the wrong moment.

3. Fluid cross-contamination (water). With all this pus and old blood and infected tissue, there is grave concern that in the process of getting rid of this crap, some of it will leak or osmose, possibly causing a more systemic infection, or Hel forbid, cross the blood/brain barrier. It may sound like a remote possibility, but three different doctors have stressed how dangerous this could be.

4. Immune strength (earth). I have a weak immune system, obviously, because that’s how I got here. I need my body to be strong enough to survive the shock to the system of losing a very large removal of tissue and mass – the amount of flesh/fat they plan to remove is about equal to losing an adult leg from the hip. I need my immune system to keep me alive while the rest of my body adjusts to the loss, and then I need it to keep me from picking up new infections while the wound heals. I also need the healing process to move at a healthy but quick pace…I really don’t want to spend
more than a month in the hospital, but if the going is slow or challenged…

Oh, and 5. The surgical team. Dr. Sacks (plastics) is the lead surgeon. Dr. Rushing (aka Dr. Awesome)
(general surg) will assist. Dr. Haut will oversee my convalescence. Two of my favorite nurses on
the surgical floor are Pearl and Ashe.

Finally, a word about Reiki. I’ve written before that I do not react well to Reiki. However, I know it is a healing modality that many of my friends and acquaintances are well versed in. I would ask that if Reiki is what is most comfortable to you, that you focus on sending it to the people who will be the most active in supporting me – namely Rave. Wintersong Tashlin has built a “redirect”, so if someone who doesn’t know about my Reiki thing, or who inadvertently sends it to me anyway, it will bounce off of me and go to whomever is wearing the receptive amulet. So if you don’t know who in my team might need it the most, go ahead and send it towards me and it will be redirected to whomever needs it at the moment.

I will try to post Part 2 soon, which will deal much more with Hel, the Norse Goddess of the Underworld, and is a little more complex. I ask you to choose whichever visualization/ritual that is more attuned to the sorts of practices you are used to; failing that, prayers are always a good choice. You can pray to whatever Deity you typically work with, or to Loki (in order to be compassionate about the contract negotiations), or to Hel (to allow me to return to Midgard to continue my Work).

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