"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.