Even mourning is more complicated with a chronic illness

December 29, 2012

Someone close to me passed away this week.  It has been a difficult time, but it has been made a bit easier by the support of my wonderful family and friends.  They make all the difference in the world.

With everything that has been going on, I have neglected my blogging lately, which I’m sure you understand.  I did want to write today, but I will keep it short, as I will be leaving soon to spend more time with my family.

And that’s my point today: there is just so much to do when someone close to you dies, and it is made more complicated by chronic illnesses.

This week has been difficult and exhausted for even the healthiest members of my family.  For me, it’s just a bit more so.  Spending long stretches with family means bringing extra doses of my medication with me at all times.  I also need to bring meals and snacks, since my special diet means that I can’t eat the food that has been prepared for everyone else.  Of course, it’s also a strain on my adrenals, which are already struggling at their sub-par levels.  There is a lot of driving and a lot of walking, which my back and the rest of my body aren’t enjoying.  The stress doesn’t help my already-poor sleep.  And all of it adds up to make my fatigue worse.

And yet I don’t want to cut back.  I don’t want to stay at home.  I want to be with my family while we grieve together.

There is no perfect answer here.  I will just do the best that I can, just as we all do in difficult situations.  For me, this means ducking out occasionally for some quiet alone time in a separate room, being careful to eat good, healthy food at regular intervals, always carrying my medication with me, and taking time when I’m alone anyway to relax, meditate, read, or otherwise reduce my stress.

I hope to return to more frequent writing in the new year.  Until then, I hope that everyone is as well as possible during this holiday season.

Why dating isn’t happening while I’m ill

December 23, 2012

I noticed her as she walked into the room.  She wasn’t “my type” yet I found her very attractive.  I smiled at her and she smiled back.  This was the point where I would normally get shy and look away and hope that maybe she’d come talk to me.  But I’m trying to get out of my shell more, and flirt, and that’s easier to do because I’m not dating anyway.  Not dating = less pressure.  So I got up, crossed the room, almost lost my nerve, got my nerve back, and introduced myself.  And she flirted with me!

We found a quiet spot and chatted for a while.  Then we went our separate ways, and found each other later in the party.  We agreed to get together one day soon.  I wondered if I could manage to see her, but I was so attracted to her, and I hadn’t had a date in 8 months, and I hadn’t had sex in 9 months.  Something had to happen to change that.  I’ve been lonely at times and I’ve been horny at times, and often I’ve been both at once.  I figured it was worth it to try just one date.  After all, I really liked her.  But then I did something stupid.

She asked, “What are you doing tomorrow?”  Before my brain could stop it, my mouth said, “Nothing.”  My brain instantly pointed out, “Of course you’re not doing anything, you idiot, because you’re exhausted and even coming to this party was a ton of effort, and you promised yourself a day to rest.  You can’t go out with her tomorrow!”  I went home thinking that maybe I could make it work, but by morning I knew it was hopeless – I felt like crap.  I texted her that I felt lousy, but didn’t elaborate, and we made plans for later in the week.  I just hope I don’t have to cancel again.  If I cancel twice in one week, I know I’ll have to give up on her, because she’ll have given up on me.  But it would be nice if it worked out and I could have just one date with her.

By an odd coincidence, I also got a text earlier yesterday from an ex.  He was thinking of me and wanted to say hi.  I filled him in on the basics (not working, not dating, etc., because of worsening health.)  He said we should get together when I’m feeling better.  I quickly explained that I’m feeling just fine for sex.  It’s dating I can’t handle.  Once I’d assured him that my health was ok for sex, we made a date for one day this week.

That’s why this whole thing is so odd.  I can have sex with someone I already know, because I don’t have to worry about explaining the health stuff.  He already knows all about it.  It’s worse than the last time we saw each other, but it’s generally the same.  He understands and accepts it.  If I have to cancel, he’ll be ok with that.  If I have a problem while we’re together, he’ll support and comfort me.  But with someone new, I want to give a good impression.  Even if I tell her a bit about what’s going on (and I’ll probably have to,) I still don’t want her to think that it’s worse than it is, or even that it’s as bad as it is.  I want to act like I’m ok so I don’t scare her off.  And I’m just in no condition to act like I’m ok, even though a date should be physically easier than sex.

So many people don’t understand why I feel that I can’t date while I’m so ill, but it all comes down to that last part: I don’t feel up to acting like I’m ok.  It’s just not worth the effort.  Because even if I can manage to do it once, chances are, I won’t be able to do it a second time, and before the third date they’ll have to know everything.

With any luck, I’ll figure out a way to share enough of my problems with the lady from last night without scaring her off.  And in the meantime, sex with my ex may not be the smartest move ever, but a good tumble is not only great exercise, but it should also help relieve stress.  Chances are, I’ll feel better afterwards.  Now I just have to make sure I’m well enough this week, and that it happens again after this week too!  And I really, really hope that I can have a good date with that woman.  Please cross your fingers (figuratively – most of us can’t do that literally anyway) for me.

Another ridiculous media portrayal of disability making our lives worthwhile

December 17, 2012

I started this blog because I was sick and tired of hearing stories about how it’s so worth it to have X health problem because of all we learn from it and blah blah blah.  Yes, I have received a lot of insight and wisdom from my health problems.  And if I didn’t have my health problems I’m sure I’d have gotten that insight and wisdom from someplace else.  After all, healthy people find it.  And I’d gladly give up those “benefits” this instant if it meant I’d get my health back.  It just pisses me off when people suggest that it’s worth being sick because of all we learn from it.  If they want to say that’s true for them, I’m fine with that, but so often it’s suggested that this is true for everyone, and that’s just not the case.

In general I like the tv show Glee.  I started watching it because all of my queer friends were watching it, and they made it sounds much better than I would have expected a show about high school kids to be.  Mostly, they and I loved that it was so inclusive of our LGBT community.  This show covers difficult topics like bullying, domestic abuse, and eating disorders.  It also has characters from minorities that aren’t often seen on tv, and never so many in one show: gays, lesbians, bisexuals, a possibly (I think likely) transgender character, one with down syndrome, a student of mixed race, blacks, Asian-Americans, a Jew, an evangelical Christian, someone with OCD…. it’s really quite amazing.  And from the start, there as been Artie, who is in a wheelchair due to an injury sustained in a car accident that occurred some time in the past.

Tiny spoiler alert: What I say now gives away a tiny part of this past week’s show, aired December 13.  It does not in any way spoil the ongoing plots of the show.

In the first moments of last week’s episode, we see Artie looking and acting upset, with a bruise on his face, and we immediately learn that the janitor didn’t salt the ramp into the school and so he slid down it and fell out of his chair.  He was humiliated to have to wait for someone to come by and help him.  He says that he wishes he’d never been in that accident and ended up in his wheelchair.  This is where the It’s a Wonderful Life ripoff comes in.  Yes, that’s right – a student/spirit comes by to show Artie what life would be like if he’d never been in that accident.  Of course, everyone else is much worse off.  His friends are no longer his friends, some are being bullied, others haven’t graduated like they should have, a teacher has stayed in a bad marriage.  What’s more, it turns out that Artie is a jerk.  He’s one of the bullies.  People are miserable.  All because he was never paralyzed.

In the end, Artie must choose whether to stay in this new messed-up reality or to go back to being in the wheelchair.  Of course he chooses the chair.

Now obviously the ways in which everyone else’s lives are messed up is a bit far-fetched, but they need it to make the plot work, so let’s just go with that for now.  As always, though, there’s no mention of the people whose lives would be improved by that accident having never happened.  I bet his parents would be happier for not having gone through all of that stress.  And what about the other driver?  And maybe one day he helped a neighbor carry something heavy upstairs.  I bet there are all sorts of ways he could have helped people, or otherwise affected their lives in a positive way.

As for the idea that Artie was only a nice guy because of the accident, I have to object.  I’m not sure how old his character was when it happened, but I really have my doubts.  Still, it’s high school, so it’s very possible he fell in with the “wrong crowd” when he could walk, and that didn’t happen when he was in the wheelchair.  But there’s this suggestion that I see and hear so often that the illness/disability makes us better people.

I don’t know about you, but I’ve met some disabled people who are real assholes.  And I’ve met non-disabled, non-ill people who are really nice.  Funny how that works.  It turns out, you can be a great person AND be healthy!  You can be a jerk AND be disabled or ill.  Go figure!  (You get that that’s sarcasm, right?)

Finally, there’s this idea that Artie became such an amazing, selfless person simply by being in a wheelchair (I was going to write “by being paralyzed” but that’s really not the focus in the show, the focus is the chair) that he’s even willing to go back to being unable to walk for the rest of his life just to make everyone else’s lives better.  Sure, this makes his life better too because he gets his friends back, but my impression was that he did it mostly to help everyone else.  Because, you know, we ill and disabled people are always so selfless like that.

Actually, I’m a pretty selfless person.  I go out of my way to help others.  I was like that long before my health problems started.  And if I was told I’d get my health back but I had to personally hurt people, I wouldn’t do it.  But if I was given the chance to be healthy, and I knew it might hurt some people but help others, and I wasn’t directly responsible for changing reality, I’m guessing I’d go for Door #2: GOOD HEALTH.

Like I said, I enjoy this show and I really appreciate the way that they handle complicated and controversial topics that other shows avoid.  Overall, I think they do a good job.  I guess that’s why I was extra disappointed to see this initial part of the show, which once again reinforced the ridiculous, deluded idea that ill/disabled people are inherently “good” because they are ill/disabled and that they don’t mind being ill/disabled all that much because they know that it makes everyone’s lives better.  How are we ever going to get the respect we deserve as long as this message is being communicated to the masses?

Ignoring vs. succumbing: Yes, there’s another option

December 14, 2012

Lying in bed, unable to sleep at 4am because I couldn’t stop thinking about a lovely woman who is slowly dying, I found the Twitter hashtag #EverydayAbleism.  And then I had the kind of profoundly insightful moment that only happens at 4am when Anti-Ableismyou can’t sleep.  Obviously at 4am it wasn’t all that insightful.  Still, I wanted to share that with you here.

A hashtag in Twitter is a way to call out a word or phrase, and to group it with other posts containing the same group or phrase.  #EverydayAbleism is being used for people to give examples of ableism they encounter throughout the course of a normal day.  It is frustrating and disheartening to read these examples, but it is also encouraging and empowering to see so many people calling attention to these wrongs, in an effort to educate people to correct their behavior.

As I read, I thought about how some people are mean, nasty, selfish, hateful, inconsiderate, or just plain assholes.  There are other people who are stupid or ill-informed.  But then there are those who just don’t get it.  I think these people honestly believe that if someone has a chronic, life-altering condition, there are only two ways to handle it:

  1. Ignore the problem and get on with life.
  2. Give in to the problem and give up friends, family, job, hobbies, etc.  Live off government handouts.  Rarely leave the house.

I think there are people who really do believe that you must either live as if the problem didn’t exist or else let it consume you entirely.  These people have never lived with such health conditions themselves, so they can only go by their own experiences.  If they get a cold, they move on with life.  If they get the flu, they lie the couch for a week until they feel better.  To them, this is what illness entails.  There is no middle ground for them.

It is easy to assume that anyone who exhibits ableism is a jerk, but I think that there are some who simply don’t get it.  They can’t understand that an illness can affect your life without halting your life.  It may be a waste of time to try to educate the assholes, but maybe we can education the deluded?

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