Lost and Found

I think the thing that's been hardest for me to grapple with over the past several months, maybe even years since I first started to become symptomatic with this most weird form of endometriosis, is the loss I've experienced. I could talk about it in purely quantitative terms -- I weigh at least 20 pounds less than I did when this all started, probably even a good deal more than just those 20 pounds. And all of this without trying. I'm sure some people would think, geez, wow, that sounds like a good side effect to me, but for me it isn't. Now I feel like when people look at me all they see is this skinny-twiggy thing where a strong and athletic girl -- strike that, woman -- used to stand.

Which leads me to what else I've lost. I'm a runner. I've been running now for as long as I can remember, and being on the roads or out on the trails brings me a kind of wholistic grace that is ineffable yet entirely tangible. Right now this running is lost to me and the truth is, it might be gone forever. I seem to be the only one who admits this readily. My friends and family urge me forward, say, you'll be back. I hope they're right. But I live with the side-stitch that won't die, even if I'm just sitting in a chair. Even more than that, or less than that, you choose, I don't remember quite how to get into shape. Getting into shape is hard. You have to get out of the house. You have to slosh along for a minute, maybe two, and then walk for three. You have to hurt. There are no endorphins yet to pull you through, no yee-haws, ha, has, I just passed that dude who cannot keep with me. All of these highs are gone. In stead there is just stomp, stomp, stomp along. This does not make me feel like a runner. Maybe I should dig out one of my marathon medals and begin this process of starting anew carrying its steel along in my hand. Maybe that would help. I don't know. Right now I'm just struggling to get out of the house to do it, even though I know, I love to run.

I commented to my graduate advisor -- I'm silly enough to be working toward a Ph.D. in the midst of all of this madness -- that what's been amazing to me as I've grappled with the hormones and the surgeries and the pain and the isolation and the hurt and even the funny is the way that this disease has made me so much more generous in some ways and so much less so in others. For the past few days, I've been rolling around in my mind what I was trying to say when I made this comment, and I'm still not sure. I guess I just realize that along with the loss -- the don't eat this's anymore, the don't runs, the nobody else has what you haves, and a lot of other things I haven't had time to articulate here -- I'm beginning to recognize, to slowly realize, that generosity is a gift of the heart. Where this gift has been poured forward to me I feel a kind holy, soul-saving water that I want to share with others who hurt. And the others who hurt are, after all, each one of us. The generosity given to me, increases two-fold the generosity I have to give. Yet, something gets subracted in all of that addition. This is where my generosity has lessened. I feel like I want to write something about empathy and reciprocity, and the ability to stand silent in front of that which you can never understand. Endo has taught me how important this is, and how often in our arrogance we refuse to admit that we are small. Endo has taught me that we cannot demand that others attempt to understand or share our pain, but we can be humbled to the core by the few who take the time to try. This is the good stuff. This is the found. Endo has taught me to give as generously as I can (and I'd like to think that's pretty generous) but not to be used, and certainly to learn more often how not to be all used-up. Pain kind of has a way of teaching you that.

I live with a disease that doctors don't understand, though many of us have it. This is scary. This makes us small. We all experience the loss of this. But some people come along and hold our hands and wait with us, in moments of joy and in moments it hurts the most. I suspect this is when they feel most helpless. I wish they knew that this is when we -- or at least when I -- feel the very most found.