Doing The Best It Can To Support My Life

July 11, 2012 at 11:16 am (Chronic Pain, Disability, Hospitalizations, Living, Living With Chronic Illness, Medical, Mental Health)

“It’s not my body’s fault that I’m sick; it’s doing the best it can to support my life” -Toni Bernhard

It’s very hard not to get angry at my body. The symptom that is getting me down the most these days is that my legs are in pretty bad pain. It seems that the meds can only do so much, and even the addition of the lidoderm patches (basically, topical anesthetic) haven’t really made much of a difference. Part of this is because my leg muscles are constantly in motion – the muscles twitch and tic of their own volition, most of the time in very small, barely noticeable twinges but sometimes big enough to make standing/walking difficult.

I’m in this weird limbo where I have to wait for more diagnostics. The last six months have been a bit of a side-trek for me, what with the manly part problems (that still need to be addressed) and the emergency hernia surgery and all the bullshit that followed. I was supposed to be following up with the neurologist, getting nerve conduction tests (which I’ve had before, but each one wants their very own) and other tests; I just got all the test paperwork re-made so I can go focus on that for a while.

But what this is really about is those moments when I’m desperately trying to make my legs obey so I can go live life. I get very mad at my body when it hurts. I guess I have to get mad at someone, and I can’t get mad at me – I didn’t ask for this or necessarily do something to make this happen – and I can’t get mad at my doctors, since they can only do as much as I am willing to cooperate with. I can’t get mad at the people in my life, because well, that would be stupid. I sometimes direct my anger at other representatives of my frustration – I curse my calendar a lot.

Up until the last few months, I was really unsure as to why I had a body. I complained, even here, about how I felt like all the pleasurable experiences I’ve had with it are slowly disappearing. I am pretty darn convinced that the reason the New Boyfriend manifested when he did, was so he could remind me that having a body can be a pretty awesome experience sometimes. I was in a detente with my body before this – I just asked that it function enough to keep me out of the hospital, and in exchange I wouldn’t ask very much of it.

But then I read the above quote, and it really made me think about my relationship with my body. I’m also writing a ritual for an upcoming event that is all about coming to terms with the body you’ve been given. Ah, cosmic timing. It’s hard for me to admit this, but it’s better for my body to send me pain signals than for it not to. At least the pain alerts me to the fact that something is wrong (even if I’m a little tired of that alert and wish I could push some sort of snooze button) so I have a strong impulse to continue what can feel like a fruitless mission to figure out what’s wrong with it. It’s better for me to experience the chronic nausea than just one day start not being able to hold down food. Even the recent skin things have made it clear to me that really, my immune system is totally confused and doesn’t know which way is up.

My body is just another player in this situation – it, too, is doing its best to cope with the circumstances it finds itself in.

That’s why I get so frustrated with all the people who promote the idea that you can “think yourself well”. I get it a lot, because people read the blog and think that if I only focused on wellness, rather than illness; life, instead of death; what abilities I still have, rather than my challenges; I would be a happier, healthier person. I call bullshit.

To insinuate that somehow my illness is a fault of willpower, that I am just not thinking myself well enough or hard enough, is ludicrous. People who try to explain to me that I can’t possibly pray enough, or take metaphysical modalities like Reiki seriously enough, because otherwise they would be working for me. I mean, these people don’t say it in those terms, of course; that would sound callous and insulting. No, instead, they’ll just send me inspirational quotes, or facebook images, that say things like, “If you just breathe, your pain will lead you to the answer.” (I get that one a lot, or ones like it.)

Sometimes I wonder if all this focus on my diet as part of the healing process is just another way to say that if I just had better willpower, better self-control, that somehow I would feel better. I’ve been trying to do this paleo-esque thing, but I will fully admit that sometime around Jon’s death, I started not to care so much. I didn’t see a single benefit coming from it at all – I didn’t lose a pound, I didn’t feel any different (if anything, my pain has gotten worse, and some of my most useful coping mechanisms had been taken away), and it was expensive and annoying. I’m in this weird place with it; I don’t want to give it up completely, because I wholeheartedly believe that there are people who vest a lot of faith in its ability to help me. I think I’ve just lost any sense of motivation, and add in the fact that things have been stressful and emotionally challenging, and it turns into a big mess.

And I am not faultless in this business. When I get depressed, or feel overwhelmed and defeated, I definitely blame myself for not trying hard enough. For not doing enough. For not making more doctor’s appointments, for not following up with each and every doctor’s suggestions. For making choices that feel good right now, rather than decisions that are for my better good. I am my own biggest critic, and I can’t blame other people for coming at me with this attitude that I am too weak to be well without taking the lion’s share of the blame – both for doing it to myself as well, and for letting this attitude penetrate my heart and make me second guess my own commitment to wellness.

One of the spiritual lessons I feel like I’m meant to be learning – not “have learned”, mind you – is that the body can teach us a lot of lessons about our humanness. We tend to look externally for answers, and even when we think we’re looking “internally”, we usually mean that we’re plumbing the depths of our own minds, rather than listening and witnessing what the body has to say. I’m trying to use this blog as a personal tool (it’s not all about you) to jot down ideas that the body inspires in me, in hopes that each quiet little message – and the big painful ones, too – will add up to some larger answer that will eventually make sense, not just to the doctor who figures out what’s going on with me, but to me as a spiritually minded person.

“Whether sick or well, may your body be a vehicle for liberation.” -Kamala Masters

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4 Comments

  1. terilee said,

    wanted to let you know 1) I read it 2) I grok (many aspects of it) 3) sorry people are sending well meaning but frustrating posts/suggestions/

    I hope this isn’t a dumb suggestion but for the lidocaine patches, my arthritis doctor told me they are more effective if not used everyday/constantly as it is possible to build up a tolerance, so they lose effectiveness overtime (I use mine about every other night). It may not be an option to try, but I thought it might be worth mentioning.

    As always, YMMV. 😀

    • Del said,

      I’m only allowed to use one a day, and it has to be 12 hours on, 12 off. I dunno. Most of the time I feel like it’s a drop in the bucket, but I guess a drop is better than no drop when things are really bad.

  2. Elizabeth said,

    I think people say those well-meaning but insensitive things because they’re afraid. They’re scared that one day such a thing may happen to them, and by telling themselves (and you) that you “just aren’t trying hard enough,” they’re trying to reassure themselves that the same level of illness and suffering would never happen to them, because *they* would do something about it. But this is merely an explanation, not an excuse. Really, the only thing that needs to be said to someone who’s got a chronic illness and is expressing their frustration over it is, “I’m sorry to hear that things are difficult — is there any way I can help?” Or sometimes, just “I’m here, and I’m listening.”

    • Del said,

      I think there’s a whole industry built around the concept that if you just will it hard enough, good things will happen to you. And therefore, the opposite must also be true; if you’re in a shitty situation, it’s a character flaw, not that sometimes shitty things happen.

      This seems to manifest around illness a LOT. I mean, one of my exes felt really strongly that admitted he had mental health issues meant admitting he was a weaker man, and so instead of getting help for his serious depression, he just kept making choices out of desperation, rather than trying to find out what it’s like to not be depressed all the time.

      But yes, most of the time I just want to know that people are listening, that I need another person to witness my situation so I don’t feel like everything is happening in a vacuum.

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