Thursday, September 11, 2014

Invisible Illness Awareness Week Sept 8-14

I bought a cane yesterday.

The amount of emotional waste that results from a change in the abilities of one's meat suit is difficult to quantify. My feelings about now occasionally needing a cane are mixed and layered, like a 7-layer-bean dip from Safeway. No matter which way I try to sort my feelings, identifying with and picking out the bits I like, scooping aside the ones I don't: it's still going to make me shit my brains out for several days. All in all, it's a pretty good metaphor.

I am glad I got the cane because it's making going up and down the stairs in our home a lot easier to deal with (I have a lot of empathy with my nearly-14-year-old pug regarding those stairs); and my son is going to make me a nice wood one that he assures me I will be able to beat people to death with*. And I've got a snappy little retort on how I'm pretty damn sporty for someone nearly a thousand years older** than most of the people I know.

But it's a blow. I like to dance. I like to move my body, even tho it hurts sometimes, even tho it's slow sometimes. I think the cane will help me walk more, but there's more going on with my illness than just mobility issues. I have a low-grade fever. I can't fall asleep naturally: meaning I need chemicals *and* exhaustion to lull me into unconsciousness and this never happens before 3AM. In the morning I am sore from sleeping on my nice, cushy, comfy, supportive, technologically advanced bed with the prescription pillow; and my shoulders feel like Atlas'. Don't even get me started on what gets me out of bed in the morning [see metaphor above, but without the metaphor].

During the day, I might be able to accomplish a few things, but even tho I slept until noon, I'm done by 5PM and need a nap. If I don't leave the house, as I haven't been able to since Tuesday, I might eek out a couple more hours of focused productivity, but I'll have to take a break every half-hour or so to lay down, collect my thoughts, and remember that I'm broken. All of this interferes with my job, my social life, and how comfortable I am even around my partners and closest friends. I've been keeping to myself a lot more lately because I just can't handle how badly misrepresented I am in the minds of people I care about.

It's really not asking that much when a person who is not currently able-bodied asks someone who is to have a little bit of empathy. Any one of you reading this right now could very well end up with an illness like mine. It's not like I did something to deserve this, and don't think I don't do as much as I possibly can with it. It's just my lot in life, and I manage as well as I can. That thought you just had about whether I've tried X, Y, or Z; if I should exercise more and lose some weight; if I should stop with the chemicals and lights at night; if I should stop eating all sugar; the assumption you just made about my physical abilities, and that I'm too broken to enjoy something like Burning Man because "it's so much work". Put yourself in my shoes, live the day I just lived, and then tell yourself those things in the tone of voice you use to be "realistic" or "helpful".

When people I know wander thru life pretending that my body works just as well as theirs does, I want to scream at them. From strangers it's annoying and stupid, but if you spend any amount of time with me, you know better. However, acting like I don't know how functional I am is demeaning, and a GIGANTIC peeve of mine. Both attitudes are different sides of same ableist coin and if you're working either extreme, you'd better stop right now. All I want is for people to be mindful and listen to me and accept my experience of my body. Not just because I have this horrible illness that steals my life and prevents me from doing things and spending time with people I enjoy; but because it's the right thing to do. Because I listen to you when you need it.

And when you listen to people who have chronic illnesses, you're going to learn a few things: we know what it's like to feel boxed in by circumstances. We know how frustration and anger feel. We know how grief feels. We share wonder at the smallest things, and joy at the larger things. We are clever. We have ideas. We observe and listen, not because we're furniture with mouths, but because we care.
I only ask for empathy from those I believe capable of it. And I find out by listening to you. It's only polite to do the same.

*He's such a good son.
**In Timelord years I'm one-thousand-and-none-of-your-business

Tuesday, March 11, 2014

Falling in Love while sitting with Death

On a long enough trajectory, everyone is dead.

All things that are things come to an end. Relationships end. Friendships fall by the wayside or crumple under the weight of irreconcillable differences. Eventually the people you depend on now will no longer be there for one reason or another.

And that sucks.

Eventually, you too will be gone -- may it be a very long time from now. I continue to remain skeptical about the different theories regarding an afterlife (or lackthereof), but I admit that I spend a lot of time contemplating Death. I have seen Death out of the corner of my eye on many occasions, and while we are not yet personally acquainted, I feel as tho we've interacted frequently enough that I would accept a friend request from Death on Facebook.

I am not eager to die, nor have I ever been. And while a number of people would consider me morbid, my fascination with Death is entirely practical. I am fully aware and cognisant of the finiteness of life, so in order to be able to let go when it's my turn, I contemplate Death. Sometimes, even thinking about what might happen if I died - I don't like those thoughts but I've learned that just because I don't like something doesn't mean I get to avoid it. Unless we're talking about canned vegetables.

Similarly, I suppose I have a morbid view of Love. For me the first step in loving anyone is coming to terms with the absolute fact that our relationship will end. It will end because we break up, and if it doesn't end that way it will end when one of us dies. When I think about giving myself to someone in the love-way, I first have to acknowledge that the relationship, like life and everything else in it, is impermanent. If I can manifest love for a person while holding this idea in my heart and mind simultaneously, then I have fallen in love completely and properly. If I can't hold that idea, my fear will be more powerful than my love, and neither of us will benefit from me being in fear with someone.

Recently, Ten and I have signed a number of documents together that reflect this preoccupation with Death. Wills, Powers of Attorney, that sort of thing, and it was uncomfortable but we did it as a commitment to each other. We still know that our relationship will end, but we've decided that that ending will come over one of our dead bodies. That's what we decided, and so we signed some papers, bought some jewelry, and are planning a party.

I would love to have this kind of commitment with all of my partners, but it's taken 7 years to get to that point with Ten, so I am content in holding those loves with an open hand and enjoying every second of them while they last. I hope to never again experience the heart-rending breakups I had before I came to the realization that letting go is part of loving, but I admit that my heart doesn't always do what I ask. And of course, more relationships means more breakups, so when the next one happens*, I'm sure I will experience the proper amount of grief.

So, as relationships flourish with the coming Spring, I have the need to appreciate them even more knowing that one day, hopefully a long time from now, they will each end in their turn. I don't like it, but I'm not afraid of it either.

*My partners should be assured that this post is not foreshadowing and I do not currently have plans to dump anybody. You're too wonderful.