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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How Google+ Helps Me Cope

February 28, 2012 at 5:00 pm (Living, Living With Chronic Illness, Uncategorized) (, , , , , , , , , , )

I don’t talk enough about the strategies I employ when trying to cope with the challenges that come with being a Del. Obviously, however much I bitch and moan about it, writing for this blog and hearing your replies helps me feel like I’m not wading through this physical and spiritual morass on my own. Those who know me well, know that being able to cue up something on Netflix or HuluPlus when I feel particularly crappy will usually placate me until my body decides to cooperate with this whole “living thing”. I’ve started using Google+ in a variety of ways to help with some of the isolation and lack of social contact I feel, and I wanted to share this tips with you for when you, too, could use a little support.

Oh no, not another social medium! I know, I know, I said the same damn thing when I signed up. It was a little easier for me since I could use my gmail information, so it wasn’t like I had to create yet another profile with yet another paragraph of witticisms about who I am and why people should care about what I post.  I hate Facebook, but it’s where the majority of my friends are active (and not just playing clicky games), so that’s my primary social medium these days. However, Facebook is filled with a lot of impersonal crap: cool pics people find around the Internet, 400 links to the same article about how terrible something or someone is, a lot of shared internet/urban legend that people fail to check Snopes for. As far as social media goes, Facebook is like getting all of my friends in a room together and letting them shout on about whatever at the top of their lungs. It gets overwhelming and can be too fast-paced for me, especially on a day where I’m not feeling all that great.

Twitter has it’s own issues. I’m a verbose kinda guy, and 140 characters continually challenges me. I feel like it lends itself to leet speak or improper grammar, as you try to shove whatever brilliant idea you have into a tweet-sized box. And honestly, most of what people post to Twitter is day-to-day minutiae that I can’t be arsed to care about on a good day, much less a challenging one. I log onto Twitter when I have short, little things to say or share that fit the Twitter milieu, like silly things about Ninja or asking a quick question. If anything, Twitter exacerbates my feeling alone, because it emphasizes that all the cool people I know are doing cool things and I am home feeling ill.

Enter Google+. It’s sorta the bastard child of Facebook and Twitter upon first glance. You’re free to post just about the same shit you can on Facebook, but for some reason I don’t see a lot of the “haha, thiz iz funny shite, yo” kinds of posts on there. (And I like it that way, so don’t you go changing it on me!) If someone posts a link to an article they find interesting, it’s almost always followed by at least some commentary on why the person feels you should read it. There are no game invites ever, which is a blessing, and the format is easier to follow that Facebook’s new Timeline.

It doesn’t have the character limit that Twitter does. In fact, I know some people who use Google+ as a micro-blog; there isn’t the same sort of pressure that a “real” blog has, to write something of quality and substance that appeals to a wide audience; you can take your time to compose something as short or as long as you need on whatever you want to say. So let me break down some of the features that are unique-ish to Google+ that make it my favorite social medium.

1. Circles. For those of us who came out of the Livejournal era (or who are still living it), it’s exactly like filters. I know that Facebook has a similar feature, but it’s much harder to employ. When I friend someone, or someone friends me, on Google+, the first thing I get to decide is what level of access they get.

What’s great about this in terms of Google+ is that it allows you to friend strangers who produce interesting content, without having to reveal to them your innermost secrets if that’s not your thing. I can friend my mom and my kinky play partner without having to worry about what I say. I have met some incredibly interesting people on Google+ because I was willing to circle them into my “strangers” circle and read what they have to say when I feel like it. Google+ actively encourages you to circle strangers, unlike Facebook. With Twitter, you have to be really interested in how Neil Gaiman feels after his transatlantic flight to follow him (sorry Neil, if you’re reading this, I’m a giant fan!). For whatever reason, people don’t use Google+ to publish life minutiae the way they do on Twitter, or if they are, they’re circling it somewhere I can’t see it, and thank you for that.

2. Group pages. Unlike Facebook, where there’s a lot of confusion over “liking” something and then finding out this means the thing you liked gets to post to your feed (If I knew that “liking” Reese’s Peanut Butter Cups meant I was going to be bombarded with stupid questions every single day about Peanut Butter Cups, I wouldn’t have bothered.) Most of the Group pages on G+ are interest based, and what you get from them is interesting discussion based on that interest. It is my work with a group page that inspired this post, but I’ll get to that in a minute.

But the very best, favorite thing about G+ is

3. Hangouts. Low pressure gatherings where you can choose the level of interaction you’re up to that day. The default is video chat (you need to have a webcam and microphone to interact on that level), but you can choose to turn your camera off and put up a jpg to represent you, if you’d rather. Or you can turn off your cam and your mic and just listen. Or you can interact via olde timey text chat that runs simultaneously with the video stream. Some hangouts are broadcast via G+ and/or YouTube, and can be recorded and watched later, if you missed it.

To me, hangouts are social interaction on demand. There are lots of open-to-the-public hangouts happening right now. If you use Chrome as your browser (I do not), there’s even a plug-in called Hangout Canopy that lets you know about public hangouts that you can join. A G+ friend of mine got to hangout with the Muppets (no lie!) because of Hangout Canopy.

If hanging out with random strangers isn’t your bag, you can click one button on your G+ page and open your own hangout. You can also make it invite only, should you choose. And what I like is that it’s easy to have an open hangout in the background while I surf the net (or write a blog post) letting my friends know that I’m up for a chat if they so desire. I’ve also scheduled G+ hangouts, by letting people know that I’ll be on at a certain time and they should meet up with me then.

I love that it doesn’t require you to install new software (unlike Skype), nor does it pressure you to pay for better features. There are whiteboard options, in case being able to illustrate something makes the conversation better. Sometimes, I am hanging out and surfing the web at the same time.

4. It’s not Facebook or Twitter. I’ve noticed that certain social media attract certain types of people. For whatever reason, the people on G+ tend to be thoughtful, intellectual people who actually have something interesting to say. Don’t get me wrong, Twitter/FB lovers; those media have their audiences too – FB is great if you want a wide audience of everyone from your best friend to some chick you met at a party two years ago to chime in on what you should wear tonight, or on some political subject; Twitter is great for posting crazy stuff that’ll make your friends think or laugh. But when I’m feeling challenged, or lonely, FB and Twitter seem to emphasize what a great time the rest of my friends are having (when they’re not emotionally panhandling). I can just poke around G+ and either find a hangout of people to chat with, or post to a relevant circle what’s going on with me, and I choose the level of intimacy that I feel comfortable with at that moment.

A big part of where this post was inspired is my activity with a Google+ group called General Support – Friends That Listen. It’s a online support group with people who face challenges – primarily illness and disability (whether mental, emotional, or physical). It hosts a weekly hangout discussion focused on issues that relate to illness and disability that is streamed via G+ and YouTube (and recorded and available after the fact, in case you can’t make it while it’s happening). They share inspirational posts and discussions during the week; some of which are as simple as “How are you doing this week? Tell us, and we’ll listen.”

The leader/creator of the group, an inspirational woman in her own right named M Monica, asked me to be a contact for the group; so if someone needs a person to chat with, or email, because of their challenges, I’m on the contact list. I feel like, in an odd way, it’s similar to being on the prayer chain at a church, except there’s no religion. I hope I can do good works through this group, and further the goal of this blog at the same time.

So that’s my 1736 word plug for Google+. If you want to circle me on there, I’m Del Schlosser. If I won’t recognize your name on there, drop me a quick note letting me know who you are and that you came from the blog so I can circle you correctly!

And if you’re reading this as I post it (at 5pm EST on February 28, 2012) I will be hosting a hangout on my G+ page until 7pm in case you’re interested. See you there?

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