When I Die: Totally Inappropriate and Totally Me

February 29, 2012 at 10:35 am (When I Die)

I got this idea from a most inappropriate source. An acquaintance of mine posted that their mother’s suicide note had “LOL” it in twice; their comment was “don’t troll your kids in your suicide note”.

If someone can find a way to use my will, my obits, or even my funeral’s program to rickroll people, you have my blessing.

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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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Fat and Disability: The Touchy Subject of Choice

February 22, 2012 at 6:38 pm (Disability, Medical) (, , , , , , , )

I have been gifted with a body. Whether you consider that gift something your parents gave you, or some cosmic dust exploded together by giant Invisible People isn’t necessarily the point in this essay. I just know that there was a time where I didn’t have a body, and now I do, and it’s my job to take care of that gift in the way I see best.

There are lots of people, some of which who have studied many other people’s bodies, who have strong opinions about how best to steward a body. Some people with bodies find something that makes their body and/or them happy, and they start thinking that if it did good things for them, everyone else should do it too. Some of us face bodies that do things we do not like, and we either come to a place of acceptance that our body has changed, or we fight this process by changing the way we steward the body.

Over time, we as a society have become incredibly judgmental about how other people take care of their bodies. We see people make decisions that don’t make sense to us, like smoking cigarettes, and we jump to the body’s defense. Rarely do we ask the person owning the body if they’re happy with their decisions, or are ready to change. We just see something we wouldn’t do with our body, and we assume that no one should do that with their body.

Maybe we’ve even seen other people, people we’ve loved, do things to their bodies and had their bodies decay and die because of them, or due to other things that came from those decisions. My father, for instance, smoked three packs a day. He made many decisions I didn’t agree with, including choosing to live separately from my mother, so he could continue to smoke. I know it doesn’t make sense to most of us, but to him smoking was important to the way he experienced being embodied, important enough that when his body started to change due to his smoking he chose not to quit. When his life changed due to his smoking, he chose not to quit.

Does this make me angry? Yes. I believe my mother deserved better. I believe my father deserved better. But we all make decisions about our bodies that make others unhappy. I don’t know where I heard this, but it went something like, “There’s a reason lung cancer doesn’t have a pretty ribbon you can wear on your lapel. That’s because society thinks that people who get lung cancer are all smokers, and they’re all at fault for their disease.”

I have had an abortion. This made my father very unhappy. He felt it was unnatural. But it wasn’t his body, so it wasn’t his choice. I know there are people I know who think that abortions are terrible things to do to your body. I am glad we live in a place where I had that option when the situation arose.

But this is supposed to be an essay about disability. I have been taking part in online conversations about the intersection of fat and disability, and it lead me to think about this whole concept that what I do with my body is my own business. When someone decided to tattoo their arms, it could affect their lives. They may be turned down for jobs, or potential loves, or places to live, due to the conceptions we have about tattooed bodies. However, when someone has a larger body, it become everyone’s business, and it’s completely socially acceptable to reduce someone else’s body stewardship to the size of that body.

There are “fathletes”. There are professional dancers, runners, sports players, who aren’t lithe. Look at Babe Ruth! Not lithe in the least. So do we judge bodily health based on athletic prowess? If I can walk six miles, or one sixth of a block, does that make me more or less healthy?

There are fat people who do not eat excessive amounts of food, and who have never eaten an excessive amount of food. In fact, I have been forced on so many diets in my life, I probably have eaten less over the span of my 37 years that non-fat people I know. The whole concept of bariatric surgery is based on the concept that fat people eat too much food, and as we look at some of the emerging long term studies of what happens to bariatric patients bears that out – many restretch their stomachs to factory-standard size and regain weight 10 years after surgery. (Others do use the surgery to retrain themselves to eat much smaller portions, and therefore the surgery works wonders. What I’m trying to say is that it is not the cure-all some people claim it is.)

There are fat people who make healthy food choices. On the other hand, there are lithe people who make terrible food choices, and suffer health consequences from it. But as a society, you rarely see someone accost a thinner person on the street or in an eatery and shame them for eating food we think is unhealthy or inappropriate. In fact, I think it’s more socially acceptable to shame a fat person eating an ice cream sundae, than it is to engage a pregnant woman in a conversation about smoking and drinking alcohol during their pregnancy. But no one thinks to shoot a thin person nasty looks when they order a triple burger with extra cheese. And you know what? Their bodies suffer from their choices too. I know it might surprise you, but thin people also develop type 2 diabetes, high blood pressure, and high cholesterol.

And there are fat people who suffer from disabilities. You’re right, sometimes we gain weight when our disability makes exercise and eating healthy food difficult – this is something I’m struggling with right now, and am about to embark on addressing with a nutritionist who knows about my limitations and is willing to come up with a plan. But as those of you who know me know, I was fat way, way, before I was disabled. So it’s not that my fat disables me; in fact, some of my symptoms get better when I gain a little weight. Also, not being able to eat or hold down food is definitely part of my disability, and so when I can eat,  and maybe gain a little weight as a side effect, it means I’m doing better.

I’ve written elsewhere about the fact that when I lose a great deal of weight due to my illness, it feels really odd to me how many people tell me how fabulous I look and how I should keep it up. In fact, there is one person that I see many times in the summer, who suggested that if my illness caused me to lose weight, then it was a good thing I was sick. It boggles me. It’s so ingrained in us that being thin means being well that we ignore the reality of other people’s bodies.

But what really makes me angry is that if I choose to be fat, or if being fat is a choice thrust upon me, I am barraged with messages (both overt and covert) that say, “If you lose weight, things will be better for you.”  No other life choice gets so much public scrutiny about how it relates to your health. People who decide to stop taking medication don’t get crucified; people who engage in risky sports don’t get harassed on the street; people who engage in addictive behaviors that decay the body are excused or ignored; but it’s completely acceptable in our society to substitute my coke for diet coke without asking (because diet coke is better for me, says you, a non-owner of my body) or to emphasize the fat content of the food I eat, or encourage me only when I am actively trying to lose weight.

This happened: I was at a local outdoor concert venue. The disabled parking was in a radically different place than other parking. Since I was walking with a cane, and long distances were difficult for my pain condition, and I have a legal parking placard, we chose to park in disabled parking. As I exited the vehicle, a man came charging up to me and loudly pointed out I was parked in a handicapped space. Mistaking him for a staff person, I pointed out the placard hanging from my rear-view, and offered to show him the documentation I carry that proves the placard belongs to me. It turned out he was just some attendee, and turned the conversation turned into one where if I walked from the lower parking lot, I wouldn’t be as fat, and I should leave that parking space for someone with a real disability. I pointed out that in Maryland, you have to have a doctor’s note that qualifies you for a placard, and the state defines what sorts of challenges count as a disability for the sake of obtaining one. So neither I, nor my doctor, just came up with “Del’s too fat to walk” and voila! I had to have long term walking issues that were documented by my doctor. Not that any of this was his business anyway. Legally, all a venue can ask for is the card in my wallet that proves the placard belongs to me.

When I see doctors, the weight issue always comes up. Now, don’t get me wrong; many of the behaviors that lead to bigger bodies can also have an impact on your health. No one knows this better than a fat person. However, it’s incredibly assumptive that if someone has a bigger body, that they’re automatically engaging in some or all the behaviors that may lead to bigger bodies. Instead of making diagnoses based on my appearance, why not ask me about those behaviors? Ask me if I have barriers to exercise. Ask me if I eat portions that are too large. Ask  me if I eat foods that are known to lead to obesity. Because in that process, you might find out things that have nothing to do with my weight.

For instance, right now, my big issue around food is that most days, my pain is too high to climb a set of stairs. Therefore, I don’t have access to a kitchen to prepare my food. Most of the food I eat is processed, shelf-stable food. I just recently put a mini fridge in my room so I can store some perishable stuff, but not much. So I’m not eating the best food for my body. On top of that, exercise is very, very difficult for me. I tried to do the Time Warp this weekend and I almost fell to the floor because my balance is way off. It is unsafe for me to go for a walk by myself, not to even address the chronic pain and neurological issues involved. But doctors don’t ask me about these things. They just slip me a brochure about bariatric surgery or medical weight loss. They just mention that if I weighed less, I’d probably have less mobility challenges.

In the end (because I’ve rambled enough about this), I’m very likely going to die a fat person. And I’m totally okay with that. I wish other people could be as okay about it, or at least accept that they, too, have ways that they treat their body that aren’t perfect, too.

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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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Reblogged: Heather MacAllister, Pudding Day + Five Years: Let It In

February 13, 2012 at 2:22 pm (Death and Dying, Living) (, , , , , , , , )

A surviving partner talks about remembering the most important lesson her dying partner taught her, now that it’s been five years since she’s passed. She also relates how it helps her with a new partner who also has cancer.

Heather MacAllister, Pudding Day + Five Years: Let It In.

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Patienthood and Personhood

February 10, 2012 at 4:58 pm (Living With Chronic Illness, Medical) (, , , , , )

I don’t usually use this blog to just repost links, but I’m short on time and am afraid I might lose this link in the process. I’ll give you a little bit of insight into the following article (which I got from Notes from a Barking Shaman, Wintersong Tashlin’s blog.

The article is here. It is called From Personhood to Patienthood, and talks about the dehumanizing process of becoming a medical patient.

I try very hard to humanize myself with my doctors. I tell them stories, I carry lunchboxes, I wear funny tee shirts, I talk about my sex life, whatever I think is going to shock them out of their “doctor” head enough to see that I’m a lot more than whatever brought me in today. Part of this is a scheme: I know that my diagnosis will eventually require many of my doctors, or at least many specialists, to communicate about me and my diagnostic history. And to do that meaningfully, they need to know who the fuck I am beyond notes in a file. My neurologist knows me as the person with the purple hair, even though that happened four years ago. My pain management doc knows me as the patient with the lunchboxes who teaches BDSM. My GP? I’m not sure I’ve made an impression on him yet, other than “the patient who is on a lot of narcotics”. I’m trying, though. Even my dentist knows me as the one with the tight mouth. (Don’t ask.)

When I’m in the hospital, I try to remember that my nurses and doctors and everyone else I interact with is having a boring, difficult workday. Although I am a wild one when I’m not getting the right kind of treatment, I’m also the funny, laid back one who asks how their day is going and notices personal touches on their outfits. I compliment their hair, or their glasses, or even their Crocs if I have to. I look for a way to be “the cool patient”. I find that way, I am more likely to get a quick response when I need actual help; they’re more likely to bend the rules for me; and they might slip me an extra jello when no one’s looking. They also remember what’s wrong with me, and can act as a secondary medical advocate if someone in the process is being a douche.

For example, I was in the hospital some years ago with abdominal pain. We know now that it was a hernia, but back then it was just this crippling pain that kept me coming back to the ER because I was vomiting and shitting and well, basically, my GI system was on strike. But the hernia didn’t show up on imaging, and I didn’t have any signs of infection, so it was pretty frustrating. The general surgeon came to see me, and told me that if I didn’t stop complaining of pain, or complaining that my pain was as severe as it was, that he would have to do exploratory surgery to see if he could find what was wrong with me. And the risks for blind exploratory surgery were astronomical, in his opinion.

Like a normal human being, I got really upset. I was in 9 out of 10 pain, couldn’t hold down food, and now I faced the choice of risky surgery or lying about how I felt. A nurse I had befriended came in and saw my distress. She asked me what was wrong, and I told her what had happened with the general surgeon. She got Righteously Angry on my behalf, because it wasn’t his right to try to “scare” me out of surgery. Within a day, I had a new, better surgeon who eventually found the hernia and repaired it.

I also battle the dehumanization of being a “patient” in my personal life. There are times my caretakers get so caught up in seeing me as a sick person, they forget that I’m still a person underneath all the illness. A person who likes to laugh, fuck, go to movies, have a say, dance, and all those other things humans like to do. Sometimes I have to resort to pretty extreme behavior (surprise blowjobs?) in order to shock them out of thinking of me primarily as a “sick person”.

Eh, enough of my rambling. I should have been in the shower two hours ago. Go read the article. It’s good stuff.

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Advanced Directives

February 8, 2012 at 4:24 pm (Death and Dying, When I Die) (, , , , , , , , )

A lot of people ask me about my advanced directives. These are legal documents that allow for someone else to make medical decisions for you in a situation where you are no longer capable of making them for yourself.

To state it publicly here so everyone knows, my medical proxy is Sara Laughlin, who I refer to as “Blue”. She is my sister. Ninja has her contact information, and I’m assuming if I’m ever in a situation where I can’t make my own medical decisions, Ninja will be around.

Ninja (whose real name is Mike Schlosser), is my secondary medical proxy. That means that if Blue is not available to decide and it needs to be made sooner than she can be reached, he is authorized to do so.

People ask me why my spouse is not my primary medical proxy. The short and true answer is, he chose not to. He feels that in a moment of grief, faced with losing his spouse, he would not be able to carry out my wishes as I have outlined them. My sister is sort of the “family medical proxy”, as she holds my mother’s proxy as well. She’s a rational, even-keeled person who knows me pretty damn well and knows what I would and would not want.

I am going to fill out new forms in the next few weeks. I am going to file them in the box with all my medical information. Currently, that box lives underneath the seat of my piano. If for any reason there is an emergency, that box should have all of my pertinent information in it, and all my legal paperwork including my will, my directives, and that sort of thing.

Whether or not you suffer from chronic illness, or think you’re going to die soon, it’s important for you to have Advanced Directives if you want any say in what happens to you and your stuff if you lose the ability to consent. If you go to this website:AARP’s Advanced Directives Site, it gives you a state by state choice, so you can download the paperwork necessary to create your documents, including what steps you need to take to make it legal. (I need to figure out who can witness mine who has no interest in having anything of mine after I die, because a witness can’t have any financial interest in your estate. So not one lunchbox, not one key. Any takers?)

Furthermore, if you have other nifty things like a checking account or stocks or a kickass vinyl collection, this Wall Street Journal article outlines other documents you should have in place so that you, and not the state (or your estranged family’s lawyers) dictates who gets what and how things are handled. This includes funeral preparations; for those of you Pagans who don’t want your family to mourn you in a Church, this may be important to you. (But keep in mind that funerals are more about comforting the living than uplifting the dead, so if the majority of the people you know are of a certain faith, it might be useful to let them mourn you in a familiar way. Luckily, most of my close friends and family are Pagan…)

Even though this is not a “When I Die” post, I’m going to categorize it as such anyway, since if someone is poking through my blog looking for my last wishes, knowing where my important documents are kept should be among those things. And yes, you too should tell more than just your spouse/parents/roommates where your medical proxy information is; you never know who will be alive and functional to help in times of crisis.

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When I Die: Get A Little Piece of Me

February 2, 2012 at 6:29 pm (When I Die) (, , )

Those who are in charge of my medical proxy and other sorts of post-Del arrangements already know this, but I figured it would be a good installment to the When I Die series.

I, like most Pagans I talk to, would prefer to have my body burned in a Pyre, but that’s pretty illegal in the US. The best legal option is cremation, and as someone who holds on to 2 sets of ashes (my late familiar’s, and a piece of my father’s), I know how healing and comforting it can be to have a physical reminder of the person who has passed on.

Because of Ninja’s Jewish beliefs, he can’t bring a dead body into the house. So Blue (which is not her real name), my sister, will be in charge of my ashes. She will retrieve them in an open container, and bring them to whatever celebration is planned for my passing. Those who wish to have a small share of my ashes may take some at that time, as long as they bring a container to put them in. (A ziplock bag is just as good as a fancy box or urn.) For the next six months, people can contact her to obtain a small amount of my ashes until there isn’t any more to give away.

What you do with those ashes is your business. I’d love it if someone went to Riverfront Park in Beacon, NY and put them in the Hudson River by climbing on the bluff of rocks that lead away from the park and into the river, if the bluff still exists. It would be cool if (after obtaining Harry’s permission) if some could be added to the center of the labyrinth at Ramblewood, or maybe planted alongside some sort of plant around Cabin 1. I’d like some to end up at Cauldron Farm, either in Raven’s care or somewhere on the property that would be appropriate. If Emily felt so moved, she is invited to take some to the Gazebo at Camp Quinpet (or the swing at Epworth, if it’s still there) and sprinkle some there.

But mostly, I assume I’ll be on various people’s altars. I am totally okay if you end up putting them into the ink for a tattoo. (Send Ninja pictures if you do that.) I’m sure you guys have some interesting ideas as to what to do with them to keep me a part of your life after I am corporeally absent.

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