Tuesday, January 19, 2010

Valentine's Day: Calling Disability Bloggers, and Cabin Fever

Dave Hingsburger will be hosting, for the second year, a Valentine's Day blogging event with the topic of disability and sex. There is very little written on disability and sex, a lot of silence. Let's break that silence. Please sign up on his blog to participate:

Cabin fever is real, let me assure you. The more bedbound, couchbound, hospital bound you are, and I do mean bound in this case even if the ties are invisible, the more the mind can begin to snap. Days don't make sense, moments blur, time loses meaning. I can hold on longer than most, though once postpartum and sleep deprived I became desperate to leave the hospital, too confined, like an animal wanting out. Chew your foot off. In contrast to some of family, I've always needed to get out, needed direct social contact.

Sometimes I want to die. Not now. While I know it can't be helped to feel it, I know it's wrong to say it, maybe not to you or you or you, but publicly, openly. And I know to express that would confirm in others' minds that I should die or that life with a disability is not worth living, that assisted suicide is what anyone would naturally want. Sometimes I am fine, cheerful even. But when I express that, people tell me when I say I am fine to their inquiries that I am not.

I should have been an existentialist.

Yes, I have moments of joy, but right now I have extreme cabin fever, restlessness. I am by nature an active person, contrary to what most ableds would believe of me, so that having to slow down was tortuous, an adjustment. But the problems I experience are fixable. A solution that doesn't mean medications but a wheelchair and some way of being meaningful in the world and being able to go out in it. Or people willing to slow down and be a friend, continue friendship, in the meantime.

How do I become productive at times like this, make it through? I'm thinking of making a video documentary, with help, of what it's like. It's all about the framing, nuance rather than simplicity, conveying the gray areas rather than people's absolute perceptions. Literally putting the writing on the wall, my husband's said he's okay with me marking off the days on the wall as I suggested--even though he's painted the wall.

I am at times very resentful. Able bodied people I know who have called and said if they can do anything at all, let them know. I name several things. No, none of those. No visits, no picking something up for my husband from the store even if he pays them back. People say they keep me in their thoughts and prayers. They should, because most people only keep us in their thoughts and prayers. So my friend was disappointed that I could not make the tiny dinner with a former poet laureate, but he cannot make time to see me here.

I've learned this: often churches interfere with God's work. They abate guilt, they consume time, they rally around crises and drama. But address ongoing needs, no. No. People are willing to judge us for what we can't do in our volunteer capacities, but volunteer to help us, no. That my husband isn't doing things well enough or perfectly with Scouts--well, maybe they shouldn't have put this demand on him or should step up themselves to help. People become too busy with their churches to help their families. Too busy having lunch out with friends weekly to ever get takeout and bring the lunch to a disabled or elderly person's house. Too busy for one of hundreds of people I know to take thirty minutes to stop by--if each of them took a turn once a week, just fifty of them--they'd only have to drop by once a year. But not even most family will.

I call this "bodycast syndrome." People would not see me when I was in traction or bodycasted when I was small--people didn't want their kids to be exposed to "that." People are worried they'll feel down. I don't understand this, why someone would feel down about visiting someone who's isolated from illness or disability. Unfortunately, my closest friends, the ones who do stop here, all live far away. They visit when they can. As Lene puts it, people want to have FUN FUN FUN; although we can certainly have fun too, no one sees that.

I've only had a couple of visitors in the past five or six weeks. I feel my mind slipping from this. I have a new rule, like Elizabeth, to get out once a week (not including doctors' appointments) no matter the cost. So last week I did go do two errands--I could only be out twenty minutes other than the drive time. I will do so again tomorrow.

I am learning, increasingly, I am not the only one alone like this. My most disabled friends are all in similar circumstances, and I can't speak for myself, but I can't understand it for them since they are very loveable people. What's going to change this? Do people realize too late when they're in the nursing homes by themselves?


yanub said...

People never think it will be them. We always think it will be someone else. Someone else to visit. Someone else to volunteer to pick up the kids. Someone else to be alone with no visitors.

FridaWrites said...

That's exactly right--that's why it's also difficult to get people to volunteer with organizations, though I used to drag people into it who did have the time and ability.

Ruth said...

I'm glad you wrote about this, but my heart goes out to you because I can relate and oh boy this hurts.

After going through times when I didn't have mobility, then regaining it, and running into people I hadn't seen, they would say "Oh I thought you moved". No, I'd reply sadly. But perhaps, on a social level, in a country where we oh-so-value independence to a fault, I had moved - certainly out of a meaningful relationship with them.

How sad for them, isn't it, that they don't realize the greatest joy comes from being there for each other as friends?

The Goldfish said...

My thoughts are with you Frida. I thought this rung so very true;

often churches interfere with God's work. They abate guilt, they consume time, they rally around crises and drama. But address ongoing needs, no.

Not just about churches, but about communities and families and networks of all variety.

If there was anything folks could help with from a distance, you'd let us know?

FridaWrites said...

Yes, Wheelie--in our case people still see our kids so know that we are here, but a few have made some big assumptions about our marriage (like we've split up) or have just thought I'm reclusive since they don't see me. Thank you for your support. I know I'll feel better being out, though it will probably take a while for the emotional pain to disappear.

For both of you, I don't mean to insult churchgoers in general. Where I live is very fundamentalist and the church becomes social--there are *huge* churches that are like big places of entertainment--indoor slides that put McDonald's to shame, massive aquariums, rock bands, elaborate carnivals. It's obscene. People lose focus.

You're right, Goldfish, that it's not just churches at all--it's also people in schools. You guys are here for me, the disability community is always here for me, and that means so much--that is enough long distance.

Elizabeth McClung said...

Yeah, I knew this would come and ordered you something which can sort of help, maybe just a little. It helped me. Should be there in less than a week. Which it was a hoverboard. Or a brick to smack up people who say, "If I can do anything.." to which after a few attempts I say, "I dunno, CAN YOU?"

As for "I'll pray for you." I am tempted to go into revival mode and wheel over and put a hand on them and go, "Oh Lord, do not smite this hypocrite, give them mercy! For while foolish and blind, they have potential." and then say, "I'll pray for you too." Maybe get a t-shirt that says, "I AM the Samaritian in the ditch.....which are you?" and when they say that, point to the t-shirt?

For feeling liking dying, if that wasn't there I think it wouldn't be right. The one and best doctor I had (a locum) asked how I was taking it. I said, "I'm really quite depressed honestly." and he said, "Good, if you had said anything else, I couldn't have given you your pain meds (??), because if this isn't depressing you, something is seriously wrong with you." - I think let's face it, you might have a (few) reasons to feel down, like, 'Why keep fighting?' down. If that question wasn't there and the answer (the quick way out) considered and dismissed, then I would ask you to send me what you are taking hits off of.

Keep your elbow in the world, because you matter and people need to remember: to stand, Fridawrites wheeled past.

You have a way with words. Write and edit and edit and send it off and write again. That sounds so much like disability that it might work. I did that for a bit and won one they tell me; Penny Richards at Disability U has the academic papers, and other places have the fiction or zines. Poetry?

I wish there was a magic pill, and I know that you will get the freedom, but things move disability time (meaning you will get your chair approved but no chair for X weeks!!!!).

I prefer, 'Bed as ass accessory' or 'lounging required' opposed to bed bound - that ought to involve furry handcuffs and some feathers or the like.

FridaWrites said...

Yes, I've come up with some sarcastic comebacks to people in my head that I haven't said yet, like:
"What was it Christ said? When someone's down, turn away?"
"When someone's being 'negative,' tell them you'll talk to them when they can be more positive and with less drama in their lives?"

And yes, bedbound should only be with consent (and it's not) and briefly for fun. I do worry about the wheelchair approval--but I will not give in on this. Giving in would be resigning myself to be bedbound and inactive at home and outside of it, not using the wheelchair, as many perceive.

I would like to do a writing project, but honestly, I'd like it to be collaborative, to show the commonalities as well as the multivocality in disability experience, echoes of one another, with each singing her own part too.

Sometimes I don't feel depressed, but that's generally when the kids are on holiday and when I can be out a lot more.