Following Austen

Interview at JonalynFincher.com

Jonalyn Fincher has posted a two-part interview on her blog.  She's a sweetheart, one of those people I wish lived close by so we could just chat over coffee.  We met at the Calvin Festival on Faith & Writing two years ago (which I highly recommend -- I'm planning to go back this year).  She's also the author of Ruby Slippers: How the Soul of a Woman Brings Her Home.  Here she is with her little Welsh Corgi named Lady Jane.

I know that you live with the daily labor of living with Lyme’s disease alongside the work of continuing your writing and daily blog. How have you learned to embrace lament and honest painful expression within the often stifling milieu of sunshin-ey, smiley Christianity? As a woman what gives you courage to be      a woman of lament?

Living with Lyme disease, which means I deal with constant exhaustion, pushed me to depths I didn’t know existed. I could no longer pretend to be okay, I simply wasn’t. It took living through that experience for me to begin to understand lament, and I still think I have a lot to learn about how to process it and how it should be experienced. I’m comforted by the fact that there’s a long tradition of lament in Christianity, that David and the prophets felt no need to be smiley. I was struggling the other day, wavering between accusing God and trusting him, and I thought, “I wonder if that qualifies me to be a psalmist?” (...)       

I'm alive!

If you've been reading the Jane Austen quote blog, you know that already, but after not posting here for six-plus months, I thought perhaps I should clarify that.

The book is completely done other than proofreading (whoo-hoo, whoo-hoo!) and review copies have already gone out, so we should start seeing some reviews in the next month or so.  I can't wait!

The title has changed once more (but this is really it):  A Walk with Jane Austen: A Journey into Adventure, Love and Faith.  And -- as you may already know -- it's available for pre-order on Amazon.  It's official release date is October 16.

I'm still struggling with the Lyme disease, but beginning to feel better.  I'm very thankful for that.  The doctors think it could be as much as another three years on treatment to get it to go into remission.  I'm continuing to pray for complete healing, and at the same time trying to mentally and emotionally accept what may be a long-term energy deficiency.

It's very nice to be back!

Ella and the new year

Thanks for all the comments and encouraging words.   And now that we are into double digits, allow me to wish everyone a hearty new year.  In the spirit of Mr. John Knightley, here's wishing that your holidays allowed you some peaceful time by your very own fire, with bad weather outside and family within.  (Or, if you are as lucky as my friend Catherine, some time sitting in the 80-degree Florida sun.)

I am planning to keep up this blog in addition to the new quote blog.  Yesterday's quote, by the way, if quite snarky, is one of my favorites.

I'm planning to post additional bits of the book here.  I'm only afraid that by the time it comes out you will have read everything good in it, so I have to make you promise now to buy it anyway.  Jane said something once (jokingly, of course) about all of her friends and family feeling obligated to buy one of her new books, and how she was very glad that they did feel obligated, even if they disliked it or never read it.  I have to agree.  The money is really all that matters to me, and I have friends enough to earn--oh, I don't know, a couple hundred dollars, at least.

I have a cover, which is absolutely gorgeous, and now I am only afraid (because I am always afraid of this, so bear with me) that the writing will not live up to the cover's promise.  I think I'm not allowed to post it yet, because I don't know if it's been officially approved, and it may be a while before I can.

Several people have asked, here or in person, about an update on the Lyme disease.  It's incredibly disheartening.  I've had good days--not healthy, but better--followed by days or weeks of fatigue and insomnia and Lyme-induced haze, and nausea from all the medicine.  Life is so far from normal.  The latest tests show that my immune system is not rallying to fight the illness, so we are trying a new antibiotic, and--fingers crossed--there have been no bad reactions yet.

I wasn't ready for a new year, simply because hope is very short, almost nonexistent at the moment.  I did not want a new year with these conditions, not knowing how long this will last or if all of 2007 will be under this very dark cloud.  But I got an iPod for Christmas, and as I was recklessly downloading music I came across a collection of Ella Fitzgerald songs and decided that I could allow myself to buy it.  And there she was singing Night and Day and Funny Valentine and Blue Skies and Over the Rainbow, and there was this tiny timbre of hope in my heart, a gift from God in the voice of Ella Fitzgerald.

Please continue to pray.  Hope to be back here soon.

Don't get me started...

Forgive me for the diversion from Austen, but today I'm compelled to write about the state of health care. (Hear me out.  It's not quite as boring as it sounds.)  I spent $556 last week filling two prescriptions, and I only filled the two that I really needed.  There are four more to be filled in the next month.

My cobra coverage ran out, because it's been 18 months since I left my job.  I thought I had another plan lined up, through a large association for the self-employed.  I met with someone, he explained the details of the plan, I applied and waited the thirty days to hear what they said.  Only, at the end of that time, I discovered not only that they had rejected me, but also that the sales guy had been far from honest.  Ugh.  It's a long story, and I could fight the decision, but the whole thing left me with a very bad taste in my mouth, so I decided to go elsewhere, and now I am uncovered and waiting another 30 days to get a response from another company.

All told, it seems that my health care costs are going to be somewhere between $850 and $1200 a month.  I have been in a state of sheer panic.  While I'm solvent at the moment, I just really don't know where all this money is going to come from.  It's devastating, and there's nothing I can do about it.

It's the blasted Lyme disease.  And the way our ridiculous system is set up, so that if you have a job you are guaranteed covereage and if you are self-employed--well, I am still guaranteed coverage under HIPAA laws, but it seems there's really no limit to what they can charge me.

Really, the best way for someone who's single and self-employed to get decent health care in this country is to get married.  It's a travesty.

"She'll live. Mama, she's conscious! She'll live!"

(Bonus points to anyone who can tell me where that quote comes from.)

Wanted to let you know, gentle readers, that I am, in fact, alive.  Now, to resuscitate this blog.

I've come through an incredibly dark time, weeks when I couldn't get off the couch, when I would lie (or is it lay?  I never could get that one straight) there alone and sleep and watch tv all day, and then go to bed at night.  There is a kind of bondage I can't really explain, when you literally cannot do all the normal daily things, like water the plants, answer the phone, make something to eat.  It was incredibly quiet and isolating, and entirely out of my control.  I felt like someone was holding my head under water and there was nothing I could do about it.  I developed a strange attachment to my butcher knife, woke up in the middle of the night with an insatiable urge to destroy things.  It was as close to suicidal as I ever want to be, and I'm hoping it's passed.

Some of this was a result of the Lyme disease, but added to that were multiple bad reactions to new medications we were trying.  Then I had to go off of sugar and flour (for medical reasons I really don't feel like getting into here), and this was really the final straw.  No brownies.  No cookies.  No French bread.  No ice cream.  Absolutely no alcohol.  Very little fruit.  Meat and vegetables--have you ever tried to survive on just meat and vegetables?  It is actually impossible.

The first week in August things began to level out and I was able to start writing again, slowly. It was like a small light had begun and was strengthening.  Some days it is brighter than others, it waxes and wanes, occasionally I fear that it's gone away entirely again, but it is warmer and brighter here than it used to be, than it has been for months.  I'm able to write a few days a week, for a couple hours.  Every week I hope for more.

Most encouraging to me, I love the book.  I'm just enjoying writing it and love how it's turning out.  I'm hopeful that it will be coherent, readable and--most of all--fun.

A very real sort of book...

Dear friends,

I've not written here for so long that I barely know how to start. I'm very pleased to announce that it's official -- Following Austen will be published by WaterBrook, a division of Random House, to be released on Sept. 1, 2007. I'm thrilled.

But -- as you may have guessed by my silence here -- my life is nearly overwhelmed at the moment by the terrifying darkness that is Lyme disease. There are moments of light, but they are more like lightning bugs than anything else -- showing up briefly and quickly fading away. Three weeks ago Friday I was able to make a pot of tea, and sit outside to write a little, and actually go for a little walk on the trail behind my house. I can't tell you how good, how significant, these small things are to me. (There are things that require energy that I never realized required energy -- things like sitting up straight, taking a bath, reading a book. Only when everything is taken away do you realize how much you take for granted in your everyday life.)

I have been writing parts of the book in my head, but have been unable to actually start writing again. Pray that I will be able to write.

The great unwashed

Forgive the silence here over the last two weeks -- I've been bed-ridden.  Actually, I've been couch-ridden.  Very slowly I'm coming out of it, but the last week and a half has been perhaps the most difficult since I initially got sick years ago.  And if it sounds like terrible fun to be stuck on the couch forced to watch movies for a while, I can tell you that after several days of being unable to do anything else, it leads to the worst kind of despair.  I couldn't work, or return voice mails, or email.  My muscles were exhausted, so climbing the stairs to look at my computer was a feat in itself.  And don't even think about showering.  (Sheesh.  This is depressing.)  I never want to watch TV again.  And that's saying something.

I talked to my doctor again, and he said he was "very encouraged."  (Hmmph.)  He cut down one of my medications, and indicated that I need to lay low for the next three months -- no travel if I can avoid it, try not to completely overtax myself.  It may take a year for me to really start feeling better, and I'm trying to process that as well.

This is probably more than you ever wanted to know about Lyme disease.  I promise, we'll get back to Austen soon.

Exhaustion, ever-present

I went to church yesterday with shaking hands, which I think is caused by the antibiotics, because they're shaking all the time now.  And I'm crying a lot.  Mostly people don't notice, I think, because I'm fairly good at hiding both.  I was trying to appear normal, and trying to pay attention and make sense of things through this veil of exhaustion, and praying I wouldn't have to run to the bathroom (one of the other effects of the antibiotics).  And then I took communion, forgetting that one of the medications says not to take EVEN A SIP of alcohol, as the effects will be disastrous, and also forgetting that now that I'm a good Anglican communion means wine and not grape juice.

And then I went home to lay on the couch and try to sleep, and try to read.

Saturday night I worked up all of my energy to go pick up Chinese food.  It's only five minutes away, but it was just about more than I could handle -- getting in the car, parking, walking in, driving home, my hands shaking again.  And then I got home and found out that they had given me only string beans, instead of chicken and string beans, and I fell apart.  I tried to tell them that I couldn't drive back and pick up the correct order -- I really couldn't.  I'm sure they didn't understand.  But eventually they sent a driver with my chicken, and had the gall to ask for their string beans back.

Sweet, sweet home (and shitty France)

I was so incredibly glad to be home on Sunday.  Two weeks away makes everything look different, and my house (which needs an inordinate number of repairs) seemed so sweet -- perfect, almost.  I decided that I love the red couch in the odd-shaped living room, the dining room table which actually only serves to hold piles of mail and newspapers, the love seat in the sunroom which I haven't touched since our visiting mouse decided it was one of his favorite perches.  I am still not fond of the tub in my master bathroom, with its talent for growing orange mold, which excessive doses of Clorox seem unable to stop.  But in that moment, even the moldy tub only bothered me a little.  And I loved my life.

France, on the other hand, was rather a disaster.  Lyme disease and international travel don't mix.  I'm not sure why this year is so much worse than last.  I could handle England last summer, which was a much more demanding trip.  But in the last several months, I've not even been able to complete a ballet class (on the rare occasion I've been able to go I've not been able to do more than barre) and a very good day is one in which I'm able to work 4-6 hours.  If I can manage the grocery store as well, that's something to celebrate.  I'm not sure why I thought I could handle an international trip.  I had faith that things would be better, I guess.

I wandered around Paris in a semi-catatonic state, the kind of deep exhaustion that is too much to actually enjoy anything.  When we made it to our Mediterranean villa, I had a series of lost days and couldn't leave the house.  It was a lovely place to be stuck, but infuriating all the same.

One of the hardest things about this disease is that my friends, no matter how much they love me -- and I know they do, and they try to understand -- can't understand what I'm experiencing because they've never been through it themselves.  I hope they never do.  But at times I also feel very alone.

So I flew home thinking, Fuck Lyme disease.  I've had it.

(Okay, my mom is going to read this.  And I know there are other gentle readers out there.  But I can't find any other word to capture the depth of my frustration.  So pardon my French -- or as my friend Bev said when we were in Paris, pardon my English.)

The problem is that willpower alone is not enough to beat this.  If it were, I would have won long ago, I'm convinced.  I'm incredibly strong (and strong-willed.)  Crazy-emotional, but strong.

The doctor told me yesterday that it's normal that I'm not feeling much better yet, that six weeks on antibiotics is too soon to start seeing significant improvements.  He said it's a good sign that in some ways my symptoms have gotten a little worse on the antibiotics -- a sign that the antibiotics are attacking the disease in its cyst form, and breaking it up, so that in the short term my body is actually having to deal with more of the active virus rather than less.  He added two more pills to the mix -- another antibiotic and another supplement.  My stash of pill bottles above the sink looks like it belongs to a 90-year-old.

It's going to be a longer haul than I was hoping for.  I still beg God for healing on the days when I have enough faith for that.   Perhaps he's only going to work through the slow medical process.  That's more hope than I had several months ago, but today it feels long and painful and uncertain.

I don't want more vacation.  What I really want is some quiet space, and the energy to do very good work.

And, when I'm better, to go back to England.

Lyme (disease, not Regis)

Chronic fatigue has been wreaking havoc with my life of late.

The great news (oddly fantastic, I'll admit) is that this appears to be Lyme disease, which is treatable.  It all started a year after I began backpacking.  I never knew I was bitten by a tick, but turns out they're often the size of poppyseeds, so you don't notice them.  The tests for Lyme are unreliable and the disease is incredibly good at masquerading as something else, or hiding completely.

I'm so glad I didn't accept my family doctor's "It will probably always be a mystery why you feel bad."  Turns out, anyone who's been diagnosed with chronic fatigue or fibromyalgia should find a specialist who knows how to test for Lyme.  (Even my infectious disease specialist didn't catch it; if they don't talk to you about CD-57 counts, they may not know what they're talking about.)

In a few months, with antibiotics, there's a very good chance my symptoms will improve.  I can't tell you how thankful I am.  I'm overwhelmed to think healing is possible.