To Be

Chronic, intractable pain is many things, but the medical community, as well as the friends and family of those afflicted, often will not or can not see it for what it is most: a disease in and of itself.

Pain, especially neuropathic kind is almost impossible to control with the available tools out there, be them the standard western medicine kind or the “alternative” (I hate that word, but everyone knows what it means) kind like acupuncture (which as been around a lot longer then the “acceptable” kind of tools), reiki, chiropractic, etc.  I use them all.  With mixed, but for the most part little, results.

I’m writing this not so much to discuss treatment but rather the perception of those around me and others who must deal with the patients of this nasty, unrelenting disease that won’t let go nor let you die.  When you live at a “7” on the 1-10 scale of pain, life is brutal.  And what’s especially brutal, from where I lay, is the isolation, the loneliness, the feeling of being disbelieved, of having no life, of feeling guilty because you think that somehow, in spite of all the pain, all the pills that dull the mind, you should be trying to do something with your life for heaven sakes.  And of course, I think (whether or not it’s true) that that’s exactly what people are thinking about me.  Never mind that most often I can barely make it through the day, get myself in the shower at least every other day if possible, do my shopping, laundry, pay bills, fight with people about what’s left after Medicare pays their share, live on what I  get from disability and try not to feel guilty about the help that my father gives me.  It’s relentless.  I know I imagine some of it, but when you are isolated and in pain, the imagination gets the better of me sometimes.  I read a book or two a week, I write, I watch movies on Netflix and I talk to my cat.  That’s about it.  I do see friends occasionally, and I know they love me; but they have the life I use to have.  They see me once every few weeks, I try and look and act as normal as possible, and the perception is that I’m not trying hard enough to earn a living.  

When I was healthy (well, healthier) and could work, not talking to someone for a few weeks was and is perfectly normal.  Now, a few weeks feels like an eternity.  I sometimes think the reason I call my providers and argue about the bills is so I’ll have someone to talk to.  I mean, I talk to my cat, Oliver, but….well, you know.

Something happens to people’s perceptions when they see someone who is ill.  They think that if you are ill, you must also be stupid, uninformed and undependable as well.  I don’t know why that is, but with the possible exception of Stephen Hawking, it seems to be true.  If you can’t work, you have no worth.  It’s so backwards it’s daunting.  Of course, in this world, especially in the West, contributing to society in a way that earns you money and recognition is all that matters.  The amount of time I spend contemplating life and it’s mysteries is a gift.  It’s the exchange rate for my physical pain, and I actually like that part of it.  I meditate

To live life as a verb.  To Be.  Just, to be. That is the gift, and I encourage those who deal with this awful disorder to use it.

Sidenote: When one is in pain, their facial expressions often mimic anger, so people look at them and think they're mad about something when all they are is in pain.  It's endless.  But people can be educated.