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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Living and Dying At the Same Time

December 6, 2012 at 2:40 am (Death and Dying, Living, Mental Health, Spiritual, The Panniculectomy) (, , , , , , , , , )

This is one of those entries. I have a thought, something not quite formed into a fully functional idea, and before I’m even done having it I can feel Mr. Goatypants breathing down my neck, pushing his fingers into my discomfort, and I know in that moment I’m going to have to write another one of those blog posts that I don’t feel entirely comfortable sharing with a public audience. So there’s your disclaimer.

As I’ve said here and elsewhere, on December 28th I am scheduled for a fairly risky surgery that the doctors are being very clear with me that my survival chances are not 100%, or even 80%. I have found it difficult to write about all the stuff that’s been going through my head, because I really don’t want people to think I’m some melodramatic queen with his hand glued to his forehead running around hollering “Oh, woe is me! Woooooe is me!” It’s not like right now, sitting at my computer, I am the typical picture of someone facing death; I’m not sickly pale (at least, not any more that usual for this Irish/Germanic redhead), I don’t weigh 90lbs with a yellow pallor to my skin. I look like everyday normal Del, walking and talking like usual. The only clues you’d have that something is amiss is that I might walk a little slower than normal for me, or I might be using my wheelchair a little more often; maybe you catch a glimpse of the large bandage on my back, or a lump in my pants where my rather large drain is hiding from view. You might see me grimace in pain, or rub my belly to help get through a cramp. But there are lots of days when I could be at a party, or shopping in the grocery store, and you’d have no idea that with every breath, I’m contemplating my death.

I’m also aware that I’m going to feel like a pretty big dolt if I come through the surgery with flying colors, regardless of whatever spiritual journey my soul takes while I’m under anesthesia. I mean, we can all hope that the on-call cardiologist will be sitting there reading the Wall Street Journal (or, if my life is at all predictable, 50 Shades of Gray). Instead of a 12 hour marathon, it has a chance of being a 6 hour jog. With luck, I’ll only have to spend a few hours or a day in ICU to stabilize, rather than the grim prediction that I will wake up on a respirator and take days to come off of it. I will feel incredibly embarrassed if I got all emo about things, only to find out it was a normal day at the office for everyone.

I’ve also been kind of vague as to why something as ho-hum as a tummy tuck carries all this risk for me. I have my reasons, and the biggest one is it’s (finally) a detail that Baphomet has not forced me to share, and I’ve learned to take my privacy where I can get it. I’ve been answering a lot of email, and started a small working group on Wiggio for those who are actively interested in helping out. They get the brunt of my Victorian wailing and detailed outpourings about how I think every single thing that has happened to me in the last four months is somehow of utmost importance now.

So where does that all leave me? Inside my head, there’s this giant grandfather clock, ticking away every second between now and 8am December 28th, when I plan to inhale from that intimidating mask (and this time, they can’t trick me into thinking it’s oxygen…fool me once!) I look at my calendar, and all I see is drudgery – doctor’s appointments, looking at apartments, finalizing my handparting with STBX, dealing with the bureaucracy involved with my shiny new legal name change – and then over the weekend, where I was very much having fun with the Boyfriend, I had a thought…

You know all those awkward conversations you have with people when you’re first getting to know them? Where you ask them questions like “If you could have any superpower, what would it be?” (Paint. That is the superpower I would want. Ask me sometime.) One of those question is usually something like:

If you have 24 hours left to live, what would you do with the time you have left?

Well, I’m pretty damn sure that in all the times I’ve asked someone that question, their answer was never “Go to three doctor’s appointments, make a hotel reservation, and check your bank balance to make sure you have enough money to pay that bill.”

So I started looking at December again. Whether or not I’m actually going to die on the 28th, who is it going to hurt to take a few chances, to get in some fun and enriching experiences, while I still have the time. I started looking at the available days I have left, and daydreamed about the fun stuff I could do.

I won’t list the entire list here, but I’ll give you a taste:

  • Go to a strip club and get a lap dance from the most attractive (or skeevy, depending on the joint) dancer
  • Go to Rocky Horror at least once
  • Make one day memorable in some way for the handful of my closest peoples.
  • Go out to a ridiculously expensive and lavish dinner. (I’m thinking either steak or sushi. Who’s in?)

Then, while I was lost making my mental list, I ran across this very thought provoking post by Ivo Domiguez Jr, on the concept that Life and Death are points on a spectrum, rather than a binary. Obviously, as someone who is a big fan of the idea of spectra vs. binaries, my eyes perked up. Although I find this post fairly basic, I’m waiting with baited breath for part two.

It made me realize, too, that this month I have to find that tipping point on the spectrum being Living and Dying. Although it’s my Job-with-a-capital-J to be “The Dying Man”, I best remember to spend some time this month being “The Living Man” too. So who is up for some shenangians? Email me! I’ll likely say yes to whatever wackiness you’re willing to drive me to!

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