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.


yanub said...

You are right. Disability can bring a smaller world, but it is no less valuable. It seems an odd idea that we should put more value on what we have in plenty. Isn't it when a thing is rare or brief or hard to attain that it is most valuable?

FridaWrites said...

Truly, yes!

Elizabeth McClung said...

Linda says that Pain makes it impossible to dream, because it always keeps you in the now, tied to that minute, I think the same is true of phyiscal limitations in some way. I was trying to explain the issue to best buy of how I use the laptop and was saying, "I live in my bed." and said, "Well, no, I mean no one can LIVE in their bed." and I thought, "But actually, I kind of DO." I relish trips outside. And emails, so often days without. I know that feeling, the empty lonely.

I think you understand how books, something to take you away, even if your body is still there, or a DVD set really ARE the cheapest pain medication there is - after all the drugs can do, to find a warm feeling of content, or 'enjoy' is almost priceless after the suffering.

FridaWrites said...

You are very right, Elizabeth. When I dream, my heart just gets broken. I prefer to spend my time with people who bring me joy and doing what brings me joy rather than focusing on what I can't do. That makes the emotional pain so much greater.

That doesn't mean I don't keep working toward less pain or doing more--the wheelchair now, the service dog apps, the new meds, dr. appt. that take (too much of) my money. It just means I take the steps to help me as much as possible.

What a synchronicity that you mention your bed. I paused and spent a lot of time looking at your bed in the video since I know that's where you spend a lot of time. I think it's nice it faces the window, so you can see out. In the same boat here--but living on the couch since I don't have a hospital bed--I have one of those giant wedges to recline against.

FridaWrites said...

And yes, books and DVDs are wonderful ways to medicate the pain. The anime videos I watched on youtube last night really did help.

Diane J Standiford said...

I was feeling lonely just now and got online to visit my friends. I thank you. So much I want to DO, but can't, yet I know, I am told, I do more than many can...guess that means I am just greedy and should shut up...but inside I have a dark lonliness. And I DO "live" in my lift-chair.

FridaWrites said...

Thank you, too, Diane. It's true that ableds often do point out how much worse we could have it. I'm acutely aware that things could be worse, maybe more than they in exact outcomes, but it confuses me about intent, the point behind their statements. Maybe people expect us to be "good girls," compliant, not complaining or having emotions about what happens to us.