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?

Wednesday, January 6, 2010

So Lonely

"Now no-one's knocked upon my door
For a thousand years, or more
All made up and nowhere to go
Welcome to this one man show
Just take a seat, they're always free
No surprise, no mystery
In this theatre that I call my soul
I always play the starring role, so lonely
So lonely, so lonely, so lonely..."
--Police, "So Lonely"

Disability is plunging the well of loneliness. The physical and emotional demands strain, but our connections to others stretch like a tensile thread that breaks, sometimes absolutely. There are those who are near me regularly, family. And those who do visit, a handful. My disabled friends who have been such a support. The children, here so much during vacations and holidays and weekends.

And then there are the disconnects, the fractures. Or the times alone, too long too long too long.

And sometimes I am the disconnect for others--because I cannot keep up, cannot be there. Sometimes I am disappointed, betrayed even. Often I disappoint, both myself and others. Betrayed by my body. Yet I do not know that I would want to give up what I've learned, this picture from the inside, and what I've been given in friendship and seen from others. How much more poignant the light from those who have so little who give so much. Again and again I see those who have the least, those dealing with their own disabilities or personal challenges, give the most. There's not one line of the Beatitudes that do not remind me of them.

The support that some give is immeasurable. People say they want to do more, but even the small amounts, the short phone call, the evening visit, the email, it helps more than they know. It keeps me going. I know what we all want is for pain to drop itself away. Instead it blooms and flourishes, its own strange flower, growing like a beast within my pelvis and spine and back and hip.

I breathe for the respites. I yearn toward them, like a driver leaning into a curve.

Dr. Empath, who's again empathic and understands these changes, that the wheelchair at this point is freedom when juxtaposed with 23 1/2 hours a day in bed or on the couch, has a new quotation on his wall. (And he does get things better than I realized--just that the main issues are rheumatologic, outside his specialty.) Something like "the end of pain is happiness." That's true. But what about when pain does not disappear? One still must find happiness. John Stuart Mill said that we only find happiness when we stop pursuing it, immersing ourselves in what is. One still does find sparks, flintstrikes of good that shock even among the greatest hurt. The arm of a child shielding me from emotional pain, the package in the mail from someone who must herself be at home.

At the quiet times I feel like an anchorite, one of the religious mystics who walled themselves in for closer contemplation of and connection to God, the breach with the outside world almost complete. Only less good and more Frida-y. The thread grown thinner. And then there are times out, too few. Yet theirs was a choice. Is it a choice for me? I don't think so. I push back harder, falter, and the pain rises again. I push back by degrees, slowly. The pain rises.

My rheumatologist recently said I have a low quality of life, knowing that I am working toward less pain, more function. He was being empathetic, but I don't agree with that statement. Right now I am feeling at a point of transition again. But I don't agree that I have a low quality of life. I live a life of the mind and do something intellectual most days. Your world can close in with disability. It's a smaller world but no less valuable, no less than that of the anchorite, the senior who cannot get out, the caged bird who sings. No less than the shaky and ill baby mouse removed to a tiny habitat, nurtured for days in my arms and watered from a bottle cap until time to be placed in a larger world again. Instead, life more treasured, more joy in the small moments, no rush.

The pain, so sharp. But also the joy.

Monday, January 4, 2010

Gaaaaah, Pain!

I have not been able to sit up in the past week. I came within a second or so of passing out last night, I guess from pain--I'd felt dizzy/giddy like high on a helium balloon for a bit--couldn't figure out why, then boom--though I was already lying down in the best position for avoiding passing out. I managed to yell, "dizzy, something wrong!" first to alert others. Then my vision went almost completely, roaring sound in ears. I'm wondering if I have an ischial fracture instead of ischial bursitis; slept late, called rheumatologist re. x-ray or referral to orthopedist, haven't heard back yet.

I just want to go to Target for a couple of on sale items and another store for a fast exchange, maybe, and to get my son new shoes--he's got big honker feet all of a sudden. And I've been wanting to go for over a week now. My expectations are small and fairly reasonable.

Floundering some. Can't think straight. Pain medicine not enough. Husband says I must be in pain to sit on ice all the time when it's cold.