Tuesday, November 1, 2016

Episode 72: Upon Beginning Hepatitis C Treatment, the Bizarre New Experience of Hope

"Hope is the thing with feathers."
Yes, I know this quotation is practically a cliche now, but as someone who is about to finish her PhD in English somewhere around the ripe old age of sixty, I could not forego the opportunity to quote a little Emily Dickinson who, if I were concentrating in American Literature, would be my gal. As it is, I'm in British Lit, and I still haven't figured out who to choose for my focus--I have at least five favorites.

As usual, focus eludes me.

So, let me NOW get to the topic of the day: Tomorrow I start an eight-week course of treatment for Hepatitis C, Genotype 1a, on Harvoni. Perhaps, just perhaps, when I finish I will be blessed with the talent of focus, which has never been one of my greatest attributes, but which has now pretty much completely flown the coop of my brain.

"What?' you ask. "Didn't you, Mary Dell, just air an episode bewailing your inability to afford treatment?"

Yes, in fact, I did, and that is what I believed. However, the stars aligned, and tomorrow I will receive, at no cost to me, my first shipment of a month's supply of Harvoni. I received a grant for the copay of nearly $4,000 of the $50,000-ish cost of the treatment, and before anyone yells that it is the people who aren't working who don't have to pay, which isn't right, the fact is that I have worked my whole life and only stopped when I got too sick to do so full-time.

Before you judge, walk a mile in my shoes. If you can manage to walk a mile; I'm not sure I can anymore. Once I tried to walk from my honey's house to mine, a distance of 1 1/2 miles, and I couldn't even get halfway. A woman pulled over to me, where I sat with my head in my arms on the side of the road, and offered me a ride. I don't know what would've happened if she hadn't.

Besides, maybe I'll be cured, and maybe that cure will have a significant effect on my degenerative brain disease, my sleep disorders, and my worst foe, a weakness and lack of energy that has nearly destroyed my quality of life. And if I'm cured and can do it again, I would love to go back to work and bring in some cash.

This being on disability is no joy, let me tell you. I pull in a fraction of what I made as a college professor for some years and as a grantwriter at a non-profit organization for nearly a decade. My darling cottage is not so darling anymore because it's in desperate need of maintenance, but I can't afford that.

Winter is Coming fills me with dread, because keeping my little poorly insulated 1940s house warm during bitterly cold mountain winters will suck even more out of my budget when I already live on the edge of being turned out of my home. I have no luxuries, although my son and I do go out to restaurants now and then. Hey, I was spoiled by my father, who took the family out to eat every Sunday night. My grocery bill these days is small because, with my conditions, I have little to no appetite, so I see any occasional night out as an opportunity to get some nutrition in me.

I do love to cook, but now we're back to the original problem: my fundamental lack of energy, my general exhaustion.

I do so hope that my energy problems will be cured along with the Hep C! I'll try to regularly check in to let you know how the treatment is going.

Hope about my future is fluttering inside me for the first time in a very long time. It feels weird; I've forgotten, honestly, with this bubbly sensation felt like. It's very much like a thing with feathers beating against my rib cage--a bluebird, perhaps, flitting through the trees as a new dawn breaks.
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N.B. For a wonderful photo of a bluebird in flight, see a blog by Bud Titlow in the Tallahassee Democrat serendipitously titled "Eastern Bluebird--Is Happiness on the Way?"

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