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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A Week With No Whine

February 16, 2012 at 2:12 pm (Living With Chronic Illness, Mental Health, Uncategorized) (, , , )

(So the week isn’t technically over, but since I’m leaving for a weekend-long event tonight, let’s pretend today is the end of the week.)

On Monday, I posted the following status update to Facebook:

I am asking for your help in a very specific way today, so please play along. I am in a bad emotional state, and should not post anything to the Internet about said emotional state. This includes blog posts, Facebook statuses, FetLife stuff, etc. I will regret it once I feel better. I do not wish to engage in predictable, “feed me positive energy and make me feel better” behavior; it is bad for me and is equal to junk food for my soul. I need to feel like crap today; the reason I feel this way is completely legit and totally earned. So if you see any emotional panhandling today, please remind me of this and ask me to delete it. Thanks.

Because I have good friends who hold me accountable to this sort of thing, I knew I would really get it if I broke this “promise” and posted whiny stuff just so people could respond with nice things about me or supportive messages, which does sometimes feel like fast food for the soul – it fills you up in the moment, but the crash later is just as bad and it does nothing for you nutritionally over the long haul.

A secret behind this status update is that I had also just had a heart to heart with a friend about this sort of behavior; about posting serious-sounding things so that people will generate and send positive energy their way. I told my friend that this was a form of psychic vampirism, a kind that has diminishing returns over time. The more you cry wolf, the less people will respond; when you have a sincere emergency that requires emotional or energetic support, you’ll find that the well is dry.

I think this was the setting for a perfect Loki-flavored storm.So you think you can’t post anything on the Internet about what you’re feeling, eh? Let’s see about that. Enter one of the worst weeks I’ve had, emotionally as well as physically, in the last six months or so. There have been days where I thought the Fentanyl withdrawal was easier than this, because at least then we knew what was happening and when it would be over. I’m experiencing an amped-up version of my muscular and nerve pain, where normally I cruise around a 4-6 on the pain scale (where 10 is the worst); this week I’ve been consistently around a 8. On top of that, I’ve had some pretty serious miscommunications with my relationship partners, including telling my spouse that some of my friends feel like he’s making a very bad (in)decision because he’s not being more proactive about finding a new place to live.

(There’s more than that, too, but the “what” isn’t the important part, here. It’s just an illustration, a placeholder.)

There were plenty of times I pulled up Facebook and started typing about what a terrible week I was having. Or even semi-witty quips about barely being able to tolerate touch on Valentine’s day. I did go so far as to post something to FetLife about how I’ve been feeling invisible in the wheelchair, and for people who are attending the same event as I this weekend are encouraged to help me make it a better event for me. Even that, I was hesitant about and one of my friends posted a jovial warning.

Meanwhile, my week kept getting worse.

This all culminated last night. After my spouse was asleep, I asked Baphomet about this situation. I felt like I was stuck between this place where I felt like my Oath to Her was that I would post about my medical stuff online, openly and honestly; but that I really needed more discernment about what was “medical stuff” and what was “whining about my lot in life”. It was She who told me I should write about the situation and make my own conclusions.

I do feel that many people, including myself, tend to beg for spoon-shaped energy bumps when we feel crappy. Sometimes we may even exaggerate or phrase things a certain way to maximize the energetic return we get from what we say. And isn’t always the obvious, “I feel like crap today; please say nice things to make me feel better”. Some post how difficult their spiritual lives are, and how their Gods ask for Oh So Much from them and it’s terribly unfair. Some post enigmatic references that no one but them understand, slowly luring you into the energetic trap if you ask for clarification. I don’t think we always do it on purpose, either; I don’t think everyone who engages in emotional panhandling realizes that’s what’s happening. They just know that they feel better when they post stuff on the Internet and people comment on it. It’s a cycle; they complain, they feel better, they get energy cookie. They complain more, they feel more better, they get bigger energy cookie. If they’re lucky, they’ll post something “catastrophic” (whether it really is or not) and it will become a meme that friends pass around social media asking for prayers or healing thoughts or good energy for.

Before everyone reading this post thinks I’m talking about them in a negative way, I want to be clear that I do this, too. I did it in this post, mentioning how bad my week was and how intense my pain has been. I haven’t been able to discern the difference, yet, between “Factual Update About My Situation For Those Who Want To Know” and “Whiney McWhinerson Is At It Again”. Because I know for a fact that once I hit “publish” on this entry, I will spend the next 12 hours checking the stats for it, as well as check for comments not only here, but on the various social media I post notices to (just in case they comment there instead). Itwill make me feel better, at least for a short time, if someone responds with kind words about my pain. But I’m not sure it’s necessarily what I want as an outcome, or that it does good things for me over the long haul.

A Buddhist friend suggested that I need to work more on applying my spiritual energy on overcoming the desire that I wish things were different (that I wasn’t in so much pain, or can’t do the things I would like) and less focus on the physical suffering. I agree with them in an ideological sense, but it also feels like the same advice I get from people who say, “Your pain is trying to teach you something.” If my pain is a teacher, I’m a terrible student. The teacher follows me everywhere I go and just yells and yells at me; they won’t even let me use the bathroom in peace. I do desire that things were different; I desire it down to the center of my soul. I accept that all I can do is keep seeking out medical care, and being proactive about taking care of myself. But I’m not (able, enlightened enough) to just give up that desire and move on. Maybe it’s what I should be working on.

I am very curious what you think about the difference between factual posts and whining. One suggestion I got on Facebook was to disable comments on factual posts, to stem the tide from people who feel inclined to send that positive energy. I don’t know if I agree; I mean, if she posted something about having a hard week or having a need and I had real advice or camaraderie to share about it, why would I refrain from responding? What do you think?

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