Meditation on Pain

I was out walking earlier today, my hands loosely balled in the pockets of my jacket and the phrase "my hands are cups of pain" ran through my mind. It took the phrase for me to focus my attention on my hands and to realize that, yes, there was a great deal of pain flowing through them. I have familiar companions these days, returned to visit after years away--pain, weakness, exhaustion. The symptoms of Lupus are active once again and I, dancing in a new place in the spiral of life, am faced with integrating this experience into the woman I am today.

Lupus is an immune system disorder with a variety of symptoms which, in addition to the pain, weakness, and exhaustion, include a red rash across the face (like a butterfly ... or a wolf bite), swollen joints, edema, chest pains when breathing deeply, sensitivity to the sun (and light), circulatory issues (my fingers become white and very cold when temperatures drop even just a bit), anemia, and a compromised ability to deal with other illnesses.

 But, like so many immune system and other illness, I "look just fine". I hear things like, "well, everyone gets tired from time to time," or "it's probably just stress--you should relax more," or "you can expect aches and pains after 50". Uh huh. I know people mean well... and... I wouldn't wish this on my worst enemy ... well ... maybe my worst enemy ... but nobody else.

The pain can be extraordinary. On a day-to-day basis, when I'm feeling well, my pain level hovers between 3 & 5 on a scale of 10. Over the years I have learned to experience pain as sensation rather than as suffering and I can manage it pretty well. The pain during a Lupus 'flare' causes me to look for a new scale--or to feel that my pain level is at a 30 or 40 on a scale of 10. There is no way to manage it. I can only ride it out--like riding heavy waves in the ocean and hoping/trusting that I will find my way back, somehow, to a solid shore.

There is no cure for Lupus. It is a progressive disorder that can leap quickly into new symptoms or lie quietly in remission for years. The treatments for Lupus are limited and often worse than the illness. During my years in Massachusetts I tried many different pain killers - they do not touch the pain. They do put me in a state of mind where I simply don't care about the pain ... or anything else. I'd rather live with pain than live without passion.

It's frustrating and frightening to experience these symptoms. There is a great deal of vulnerability in knowing that when I go out for my evening stroll that what appears to be a contemplative walking meditation is actually just as fast as I can go... and that I am fully aware of the potential for collapse at any time. It is frustrating and frightening to experience these symptoms and to know that they could last a few days ... weeks ... months ... even years ... and I can't know if I'll feel better soon ... or never. It is frustrating and frightening to realize that I must deliberately limit myself to situations that I can handle by myself.

Those of you who have followed "Into the West" since my trip in October 2007, and those who know me well, have heard about the many changes in my life since the move--each one for the better. My life in Montana has expanded into opportunities and experiences that were entirely unexpected ... and quite wonderful. I have had the time, space, and the health to develop my interests, my skills, my abilities, and my self more deeply than ever before. It is frustrating and frightening to think that this time of growth may be over.

"My hands are cups of pain" ... it's true more often than not these past days and weeks. The pain slows me down, forces me to focus on be-ing rather than do-ing. It gives me the opportunity to contemplate the years ahead in which I will age and eventually (like everyone else) die. It allows me to consider how I want to live these remaining years, to think about and name the experiences, the people, the situations that are ... and are not ... important to me. It allows me the opportunity for deeper understanding, deeper gratitude, and deeper compassion. These are gifts to me - and the cost is very high some days. But, I think, worth it.