Sunday, July 15, 2012

Zip-line



Yesterday, I took my three kids to our local Epilepsy Foundation Family Picnic. To tell you the truth, I dreaded going, particularly after Sophie had her usual morning seizure and remained clammy and drooly for a couple of hours afterward. I felt obligated, though -- obligated because I had told the foundation that I'd be there, and they have so many good people in that organization. I have taken  a sort of sabbatical from all things epilepsy during the last year, giving up my positions on the boards of these organizations and limiting my work as a writer and advocate to only paid contracts. I didn't even participate in last fall's epilepsy walk, and aside from some private counseling for new families, I've steered away from formal activities, fund-raising and even the mustering of excitement when new drugs and therapies are announced.

I'm burnt, to put it mildly. Burnt and jaded and profoundly cynical and certainly not optimistic that Sophie's seizures will ever abate through traditional means.

Yesterday, I met some new families, wonderful parents and children who are all struggling with this terrible disease. Despite advances in treatment, though, and all different modalities, including diet, drugs and surgery, I didn't talk to one parent that wasn't overwhelmed and one child that didn't appear drugged, drowsy or just plain out of it. I have no idea what the answer is, and the older I get and the more years of doing it, the less engaged I become. I imagine it's a survival mechanism -- a means of living day to day when a more appropriate response might be a continual wailing and gnashing of one's teeth and perhaps some homicidal thoughts toward the drug industry, the callous doctors, the ineffectual systems in place, and those systems that are completely lacking. When you throw in the relative indifference of the political system and the culture in general to the plight of the disabled and the strength and perseverance it takes to continually advocate and fight for a better life for your child, yourself and your family -- well -- there is, if not a breaking point, then certainly a point of surrender when you can't think about or do it anymore.

Yesterday, I sat and had a slow, labored conversation with a very sweet young girl who had started seizing when she was five years old, out of the blue and for no reason. She was eleven now and according to her mother had been on thirteen drugs, been through brain surgery, wore a vagal nerve stimulator and was just initiating the ketogenic diet. She was also on two anti-epileptic drugs that, along with the seizures, made her speech and reasoning slow and her eyes dull. I also spoke to an adult who had a stroke during her second pregnancy twenty years before. As a result, she had epilepsy that was difficult to control and was on several medications, and while she was cheerful and active, there was also something off about her, something I couldn't put my finger on, a missing filter, perhaps. She told me that the new drug that she was taking, Vimpat, made her feel terrible -- nauseous, irritable, dizzy and headachey. Sophie takes the same drug, and while it helps her seizures somewhat -- I think -- I agonize over the side effects and wonder just how shitty Sophie might feel.

Depressing post, right? I'm just getting it out, plucking the words, attached to vague and nauseating feelings that I, and apparently most, parents of children with uncontrolled seizure disorders and other disabilities probably share.

I suppose it's good to be in a beautiful park, a camp setting, with your family and many other families who share your life in some respects. I didn't know, though, whether to feel camaraderie or incredible isolation. I guess I felt both. Sophie couldn't do most of the activities but loved walking in a giant field of grass.


A little later after this picture was taken, I was encouraged to let her experience a zip-line, and while she seemed to enjoy it (her intake of breath and startled expression told me) -- I felt more like downing a shot of liquor, straight-up, watching her.







Henry and Oliver participated in the teen activities, mingling with other siblings and older children with seizure disorders. Their dare-deviltry included climbing walls and other acrobatic feats -- and while Oliver froze at the top of a very, very high structure and had to be coaxed and talked down by two heroic young men who firmly talked him out of a rising hysteria, I never felt anxious watching him.

I'm grateful for that.







Henry scrambled up all the structures like the athlete that he has become. My stomach lurched, once or twice, when he yelled for me to LOOK! but otherwise, I felt only pride at what my boys have made of their short lives.




I have no idea where this post is going other than to describe a day where I held both anger and lassitude, fear and content, despair and hope, resentment and gratitude all at once, in balance, in either hand, a lifetime shortened to five hours in a verdant park in an inchoate city on one tiny, spinning planet in a vast universe.

21 comments:

  1. And isn't that life? That feeling this and yet that at the same exact time?
    You don't HAVE to do these things, Elizabeth. Only if you want to. You have done that part so many years.
    This was a beautiful post, as all of yours are.
    You give me so much to think about.

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  2. so much, this life in which we can experience such completely opposite emotions at once and hold them both in the same body, the same heart.

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  3. its amazing how one experience can represent so many things about our lives, all rolled into one brief interlude. You said you didnt know where your post was going... i do - straight to each one of our hearts.

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  4. fatigue sets in, and the desire to tune out all the noise is strong. Go with it, I say. Give yourself a lot of credit for the work you have done and the on-going care of your daughter and sons. Caring for an on-going disease process is exhausting (I know) and I just have to bow out whenever. Other times, I'm totally up for anything. The ebb and flow of it all.

    We are indeed little specs on this tiny ball whirling out in space.

    I'm sure you speak for a lot of people, E.

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  5. Elizabeth - -17 years is a lifetime of caregiving. You are more than entitled to take a break and to experience the array of feelings you've described so beautifully and honestly. I don't know of you and yet think of you every day. Thank you for so much honesty.

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  6. Every time I read here I hold my breath literally I stop breathing until I get to the end of where you're going. It's all I can do but wonder at you at Sophie at your brave boys all of you marvels. And your writing is pure.

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  7. What a perfectly clear description of a day containing beauty with a difficult undertone; part of a life rich in goodness, with a note of discord interweaving with the notes of harmony. You deserve any break you desire from "all things epilepsy." How I wish there were answers, and a cure! I join you in surrender that there isn't, at this time, - and in hope that one day soon, there will be.

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  8. Yes. So much emotion in our tiny huge hearts on this speck of a planet in the vast universe.

    Could almost make one a Believer

    xoxoxo

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  9. I understand your sentiment all too well...

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  10. I am so often struck by the chasms of ability - verbal and physical - that exist between your boys and Sophie. It amazes me that so much of that probably hinges on the communication piece, that you are not ever completely certain how she is feeling or what she is thinking and I cannot imagine what that does to you as her mother.

    I am certain that you have done more than your share for this group and your decision to bow out for a while (or forever) is not begrudged by anyone. Your words, spoken one-on-one at an event such as this or written here in this blog, are so full of experience and depth of caring that they touch many people in ways that are helpful beyond your knowing.

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  11. You MUST, must, write that book.

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  12. P.S. - if it will make Oliver feel any better, you're welcome to tell him that I freaked out on a waterpark slide. I walked to the top with everyone else - however many stories that was - and when I faced the tube slide, had an attack of claustrophobia. I had to do the "walk of shame" down the stairs by myself (the rest of my family went down the slide), past small children who were more courageous than I. It was a small price to pay for peace of mind - no regrets!

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  13. When my daughter was diagnosed with N.F. I couldn't handle the support groups; I could not make their life mine. It was just too awful.

    As for all the medications. It is no secret about my hatred for the pharmaceutical companies. Promises that they know damn well aren't true and yet they continue to push their wares and lie about them.

    The climbing structure looks fun but I would be like Oliver and get stuck when I looked down.

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  14. When my daughter was diagnosed with N.F. I couldn't handle the support groups; I could not make their life mine. It was just too awful.

    As for all the medications. It is no secret about my hatred for the pharmaceutical companies. Promises that they know damn well aren't true and yet they continue to push their wares and lie about them.

    The climbing structure looks fun but I would be like Oliver and get stuck when I looked down.

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  15. Wishing all of you all the peace and relief and moments of happiness in the midst of everything else that you could ever want.

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  16. as rebecca said, i have that feeling, too. holding my breath, where are we going, can she do this, how can she do this, pheww. jesus, she can do it....again. you are something, elizabeth. and your kids. boy, they are seriously lucky ducks.

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  17. I like this post... it feels very much like your thoughts just spilled out on the page... I hope it was as easy to write as it was to read. No pressure here to do any volunteer work ...just keep getting up in the morning and you'll continue to impress me. How anyone with a special needs child has time for volunteer work is beyond me!

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  18. I suspect things like this have a limited life, although they are important. My sister, who is profoundly Deaf, I know vacillates between the Deaf community, where her Deafness (which isn't going anywhere, which is never going to be cured) is the primary self-identifier, and the Hearing world, where being Deaf is one of a number of qualities she has. On one had, in the Deaf community, she's not the weird one out, no one has to explain, no one gives anyone else weird looks (what's WRONG with that kid, etc, etc,) but I know she also struggles with identifying solely with her Deafness. And I know at first, for my parents, being part of Deaf-chld support groups was enormously helpful and a relief; but my sister's deafness wasn't cured and there's only so much one can give before--let's face it, we get tired. I suspect that those groups were really important when my sister was first born, when they were first reeling with the implications of a Deaf daughter, and later, in moments of crisis the community remained there to support them--and maybe that's what those groups do best. And I suspect a lot of those parents fluctuate like you do.

    And you always write so beautifully. Always.

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  19. I love you so fucking much it makes my teeth ache.

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  20. the drugs part is just so depressing ... it's hard not to feel angry at how the so called Rx solutions are peddled ... it's the only business I can think of that can sell a crappy product and succeed at it. It's the emotion of hope that keeps them in business - ugh!

    I am again amazed at the balance you maintain - I see love and know that is how you do it

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