Day 1: Three Day Quote Challenge

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Thanks to socialworkerangela from iammyownisland.wordpress.com for nominating me.

The quote challenge is a REAL challenge for me; I hate quoting others. It’s a stretch to find something I feel is appropriate, much less find someone I feel inclined to quote. But I thought it might be a good way to stop me from obsessing over current events, so here goes.

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I think I would have latched onto this quote regardless of who is credited for saying it. This is the epiphany that came to me in my early 20s, when my mother lay dying from a long battle with colon cancer. Far better worded than I would have put it, but the same sentiment. It’s the sentiment behind this quote that sent me traveling around the world. It’s why I chucked any chance of a career with my academic credentials and make music. It’s why I write. It’s why I do many things.

For those of us living with chronic illnesses, this quote holds particular poignancy. It’s very difficult to balance pain and pleasure when they come to you in equal measures regardless of what you do. I want to get out, do more. Doing more and pushing my body will hurt it. Therefore, I sit on the pleasure/pain spectrum pretty much every day. How much do I want a clean house? Well, how much pain am I willing to go through to get a clean house? That kind of trade-off has become second nature to me.

Last night the long awaited visit from R happened. While my bro chatted with the accountant, I chatted with R. I learned a few things. For one, the confusion over my role in the music company came from my brother. He ‘forgot’ to mention my part in things up until last night. THEN I heard all the ‘oh, my sister wrote that’ or ‘this is my sister’s music’ or ‘yes, she’s a musician, too’. All the things that tell me that no, he didn’t mention any of it earlier, which is why he was scrambling to explain it all last night. Btw, there will be no confrontation over this incident. It’s not worth it, and as I’ve said before, I feel it’s important for my brother to have friends and connections apart from me. R turned out to be older than I’d imagined. Older and shorter. He’s got a quick mind, and he’s well educated. We hit a myriad of topics in a short hour, including my RA. And I found myself saying something out loud that’s crossed my mind but I’ve never vocalized it before.

I’m kind of glad my mom never took me to the doctor for my RA. I might have accepted it. Just kind of laid back and let it happen to me. Instead, I kept pushing. Kept walking. Kept moving. It’s what I credit for my continued flexibility and range of movement despite the severity of the disease.

While there’s all sorts of crap attached to what I did – like calling myself weak, or blaming myself for my pain – I didn’t give into the disease. Had I been diagnosed as a child, when I believe the RA first set in, my life might have been much, much different. I would have been less physical. I would have tried less out of fear of hurting myself, or because the doctor said take it easy. The disease would have been a major part of my life. Instead, I’m reluctant to fully acknowledge what the RA has done to me. I push. I walk. I swim. I keep going even when I have pain because that’s just the way it is for me, that’s the way it’s ALWAYS been for me. It’s my body; it’s not the RA.

And the sometimes my body works and sometimes my body doesn’t work reality has made me grab what life I can when I can. Severe pain – I’m talking about the type that makes you scream out, not just the type that won’t let you sleep – changes your perspective. When it goes on and on and there’s no end in sight you begin to think this is it. You begin to think you can’t take it anymore, that your body is just gonna give out from too much pain. So when the pain isn’t there you make the most of it. You get out and do things. You enjoy laughing a little bit more. You tell friends and loved ones how you feel – just in case.

You find out what’s really important.

There is no stopping death. Sooner or later it will get every single one of us. But if I had to make a choice between many years in a wheelchair or a few years up and about doing what I want to do, it’s a no brainer. I’ll choose the active life, thank you. The one where I get to LIVE.

Maybe I’ll smoke myself to death. Or maybe one of the many cancers in my family will get me: colon, brain, stomach, pancreas, lung. Heart disease is a possibility, as is stroke. Or maybe the meds they have me on will do the deed, either thru side-effects or run-away infections.

In the meantime, tho, I’ve lived. Packed my life with life, as much as possible. Found people and ideals to care about. Crafted word and sound out of thin air. Laughed, and cried. I’ve said things that have helped people and hurt people – and done the same. I’ve made plenty of mistakes, but there’s nothing I’d really do differently because every step led me here.

On average, 105 people die every minute.

Have you packed your life full of life today?

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