Sunday, March 21, 2010

Healing and Curing

As readers of my blog already know, I have been lately embroiled in a particularly nasty fight with my daughter's insurance company over a medicine that her neurologist has prescribed in hopes that it might help with her seizures. The fact that the entire country is involved, to a certain extent, in this fight, makes the usual machinations of caring for a chronically ill child perhaps more dramatic. It's been difficult for me not to feel that my own particular hardship is somehow an emblem for the country as a whole and that my voice and the voices of perhaps millions like me has been drowned out by politics and hysteria. And without entering into those politics myself on this blog, it takes some will to not feel dragged down by it all, to not feel as if the voices raised to such alarming degree against reform are actually shouting at me, at Sophie, at the difficulties we endure. When I am spending literal hours on the telephone with an insurance company, a pharmacist and a neurology office to settle what is really a basic issue -- the prescribing of birth control to my severely disabled daughter with uncontrolled seizures in the hopes that it might better regulate the hormones that wreak such havoc on her brain on body -- it's difficult NOT to think that there is some larger conspiracy, something systematic in the obfuscation that I encounter.  

I also might draw a parallel to the over-arching issue of helping my daughter in this convoluted mess we call a healthcare system in the United States. The fact that despite consultations with the best neurologists, geneticists and specialists in the country, coupled with the most advanced drugs, diagnostic tools and tests, next to nothing is really known about my daughter's epilepsy nor is it even remotely helped, has been the great conflict and defining component of my life. It has caused a helpless anger at times and a patient, stoic resignation at others. I have been sucked down the path of recrimination, lashing out at the cruelty and seeming off-handedness of doctors and then trudged backward -- forward --  toward a more enlightened view that many are working to the best of their abilities in a samsara-like way. And in the same way it takes quite a bit of will not to take personally what happens in the political world, I must continually talk my way out of the bewilderment, confusion and anger I feel about how resources are allocated in our wealthy country, what sorts of worries the populace has (terrorism) and the power corporate interests (drug companies, food companies, etc.) have in shaping those worries.

Whenever my mind is consumed by all of this (like now!), I try to be still and present in this moment. I realize that all my work, all my kvetching, all the expending of energy, the frenetic running on the wheel is useless in an essential way. This might sound like resignation or even the signs of a depressed person, but I'm sure that it is not. I find it difficult to really articulate the feeling I have when I stand on the brink and look over the ledge but manage not to fall but to fly. I go back, again and again to this quote by Dr. Paul Epstein, a naturopath:

In curing, we are trying to get somewhere, we are looking for answers. In curing, our efforts are specifically designed to make something happen. In healing, we live questions instead of answers. We hang out in the unknown. We trust the emergence of whatever will be. We trust the insight will come. The challenge in medicine is not the choice between the one and the other. We need both.

 

Elizabeth believes that her daughter has been healed but not cured. She still despises the insurance industry and thinks this country could use a little more socialized healthcare and a little less drive and beat to self-interest. She blogs regularly at a moon, worn as if it had been a shell.

T

5 comments:

  1. Thank you! Thank you! Often, even if we don't want to admit it, the personal is the political.

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  2. This rings a gong (not just a bell) for me, though the struggle itself differs from our current ones. It's a feeling of charge and retreat for me. When I see the "beast' (whether that's an insurance company, an SLP, seizures themselves, ignorant comments) in a certain light, a somewhat limited light - I can charge ahead, full steam, feeling like I'll have impact. And I am able to rearrange some things for my daughter this way. But other times I make the mistake of looking at the entire context (ie,this person will think twice before tossing out other ignorant comments - but there are thousands more who will cross paths and hurt in the same ways), I do feel like a hamster in a wheel, like maybe the wisest course is to duck and cover. I spend more time and energy altering my view of things to keep on keeping on, but I teeter, teeter, teeter over that same brink you speak of.
    Really well articulated.

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  3. Another well-written post, Elizabeth. What especially resonated with me was this - "I stand on the brink and look over the ledge but manage not to fall but to fly." A beautiful image applied to such a difficult issue.

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