Saturday, November 13, 2010

My struggle to remain healthy is gradually killing me

So, pain. I've been on intimate terms with pain for some time now. I've had chronic illnesses for 12 years, and so it's not a day goes by that's pain free. Not a day goes by that I'm not in agony. And generally, I don't talk about it. I never have talked much about it. This thing rules my life in so many ways, that I'm bored of giving it so much time and attention, so I don't like to give it additional time and energy by then talking about it. As Thomas De Baggio said: "It is not long before you are under the spell of the disease. Its heartbeat is your heartbeat. There is danger in trying to understand evil, especially when it is so close to you, gaining control...I worry I will become too conversant with this disease in me, and it will hijack my life with my permission."
And additionally, our society doesn't like chronic illnesses or dealing with the differently abled. You need to get better, or it needs to kill you. None of these in between nonsense. And so people often don't really know how to deal with talking about someone else's pain or disability. They tend to back up a little, their eyes glaze over, and you can see them just dying to move on to the next person. You get all sorts of comments along the lines of "You still have that? Maybe if you really just pushed yourself just a little more and didn't dwell on it, you'd feel better. Maybe it's depression. Are you sure it's not just in your head? You can't blame everything on your illness. Yea, I had mono/the flu/broken leg/etc once, so I know exactly how you feel." And you get friends or acquaintances, or family that may say they understand, but after you've had to cancel on them three times in a row, or have a reason why you can't come for the holidays, or whatever else, they take it very personally. It's not your illness, very clearly you are trying to brush them off, and/or you are just being selfish. No matter how much you try to explain, it's never enough. So you get good at trying to hide how bad things really are. And you avoid the elephant in the room for your sake, and for others.

And there's the doctors. Who are not God. Who are not even close.
But who have been set up to be gods, and believe there's nothing they don't know, and nothing they can't fix. So when they come across an stubborn case, they don't like it. They get annoyed, like you are remaining ill just to spite them somehow. Or else they don't try so as to not fail. They give a little pat on the head, say it' s too bad you have this, but there's really not much they can do, sorry. Or if by some chance, you do find a caring doctor who will pursue every possible course for you, and you still remain ill, they throw up their hands and say well, you've certainly got me baffled. And you almost feel bad for putting them through such trouble. While maybe you get one that still doesn't give up on you after that, but still keeps trying, it gets old, hearing from doctor after doctor that you baffle them. That you flummox them. That they don't really know what else to do. And every time you walk out of an encounter like any of the above, another small piece of hope dies.

People like to talk about what a great teacher pain is, and how you must be learning so many Lessons! And Answers! And Truths! And it's true. There is a great deal that you learn from chronic illnesses/pain or disability. But there are probably other ways you can learn the same lessons. Anne Morrow Lindbergh: "I do not believe that sheer suffering teaches. If suffering alone taught, all the world would be wise, since everyone suffers. To suffering must be added mourning, understanding, patience, love, openness and the willingness to remain vulnerable." To which I say, amen. If you don't have some of those qualities, or learn them along the way, your suffering won't teach you are darn thing. It will instead just turn you a cranky bitter person everyone hates to visit like Mrs Snow in Pollyanna.

But you have no choice but to carry on. And so:

and you get through another day and fall into bed and pray for strength to get through the night, and then strength to get through the day upon waking. And you survive, day after day because there's nothing else to do. But you wish desperately for a day where life isn't just survival or mere endurance, but something more. And in the mean time you are still oddly grateful to still be here. To still feel the wind. To see the fall colors, or a waterfall, or the ocean, or the mountains. To have family. To explore the world vicariously through books or movies or the internet, or the stories of others. And if nothing else, pain has taught you to live in the present. To be grateful for those things you can still do. For those rare moments where the pain subsides. For really living in your body--learning your limits, figuring out the signals when a relapse or flare-up is coming on, being hyper-aware of every part of you because you've felt pain in places you previously never even knew existed. For learning that life doesn't ever turn out the way you expect, but even so and despite everything, maybe it's ok after all.
(Blossom of Pain by Edvard Munch)


  1. I'm always afraid to comment on people's blogs for a few reasons:
    1- I won't know if/when they respond without checking back in to see if they responded (unless there's something I'm missing)
    2- I know the person and could be having a live or phone conversation and instead am commenting on a virtual page...
    3- who has time to comment on blogs or even blog anyway? ;)
    4- commenting in general is tasteless and silly. those silly commenters... why do i love it so much when they comment on mine?
    5- i love you
    6- to the pain?... :(

  2. 1-You can usually subscribe to the thread or get notified of follow-up comments on most blogs, so you'll know if people respond to you without having to check back.
    2-For that matter, why facebook or email?
    4-And here I thought it was a way to conversate...
    5-Love you back
    6-Well, as long as I can keep my perfect ears

  3. i love you mandy poo. and i'm glad that we're twins 11 years apart. and also i miss you.

  4. Love you too poodle. Also, don't forget your way back, we'll leave the light on for you.

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  6. Yikes, I just rediscovered your blog so totally missed the last few postings. I can only partially imagine your struggles. I love you tons and wish I could ease your pain!