I think for a while there I was just going through the motions of living without actually living, without being able to be fully present in whatever was going on at the moment. I’m beginning to feel like I’m returning to myself. out of deep fog. My book of the week is Awakenings, by Oliver Sacks, another random book chosen out of a Powells.com recommendation. They were actually recommending Musicophilia, his most recent book, but I do this obsessive-compulsive thing on my library’s inter-library loan site where I go back and request the earliest book published by the author. This means I end up with very random library books that show up in the form of phone calls from the library telling me that my book is in. I love it.
The right book always seems to appear at the right moment. My last book, The Thirteenth Tale, was a recent debut novel by someone in the neo-gothic tradition. It was great--just pulpy enough, not too pulpy--to carry me through the last week at the hospital. This new book, Awakenings, is all about the nature of illness and the nature of the medical profession. It’s about this bizarre sleeping-sickness that swept the world in the 1920s. I had never even heard of it, nor had I heard of the miraculous effects of this drug that brought people out of their sleep-like states. I feel a little bit like that’s what’s happening to me, that I’m beginning to wake up to the reality of things as they stand now. I stand at the crux of this decision: do I need to go back to Secret by myself and try to complete her repair? Or do I need to get a job for a month or two to carry us through this difficult time?
I’m trying not to think about it too much. I’m trying to have enough faith that whatever the right decision is will be made clear. When God closes a door, he opens a window? Right? Can I get an Amen?? I’m also trying not to thing that my faith is actually faith and not dreary fatalism. If nothing else, this situation has done wonders for my church attendance.
I am having a hard time writing, too, which is odd considering how much time I have on my hands. I’ve begun to explore the World of Blogs that exists on the internet, the so-called Blogosphere. It’s a bewildering place. I don’t have the sense of isolation that I did when I was scribbling in my little notebook anchored off deserted islands, feeling like it would be months before anyone would read of our arduous adventures. Instead, here, blogging is a thing, something that one does, a blogger something that one is. I find myself trapped on blogs that evaluate the current state of Britney Spears’s underwear or lack thereof, or blogs where girls talk about their weight-loss or lack thereof, or innumerable addictive blogs that chronicle baby doings. It seems so removed from my little notebooks where I’ve scribbled daily depressive missives about our lack of progress.
It makes the prospect of “freelance writing,” my presumptive career, that much more difficult. Is blogging freelance writing? Not if I don’t get paid for it. How do I get a job writing? Is it too much to demand that society provide me with employment doing what I love? Or should all that society offer me be a job at the corner convenience store?
Saturday, January 26, 2008
Friday, January 18, 2008
Marion, Massachusetts
Karl was discharged from the hospital on Wednesday. We’ve been back at his mom’s house a full 24 hours now, and I feel like a light’s been turned back on, as crazy as that sounds. I’ve been remembering our first couple of weeks together back on the Appalachian Trail in Virginia. Our second week together was at Trail Days in Damascus, the big trail festival a quarter of the way through. I couldn’t write then the things I can write now: how one night, at a campfire, Karl wandered off with another friend and I had this mysterious feeling like someone had turned off a light. We were outside, by a fire, in the darkness, under the moon and stars, and I kept looking over my shoulder, thinking “Who turned off the light? Wasn’t there just a lamp on?” When Karl came strolling back, I breathed deeply--the light was back.
That’s how I feel now. I don’t think I realized just how afraid I’ve been this last month. I’ve been making my way through every day on the edge of terror, afraid to even acknowledge my fear, unable to put it into words. If I say it aloud, it will be true. The fear manifested itself as a very odd emotion for me, anger. I don’t generally get very angry, but I kept erupting these last weeks, once at the doctors in Chattanooga, another couple of times here at how powerless I felt to get around, to stay on top of all the paperwork, to wrestle with the telephone calls. One operator at MassHealth, well-meaning I’m sure, told me that they weren’t covering Karl’s Chattanooga hospital stay because he didn’t have a “life-threatening illness.” I hung up on him. I’ve dealt with it now, consulted with doctors and insurance advocates, and we’ll appeal the decision, but at that moment I pushed over the edge.
My dreams keep haunting me. I’m happy sometimes that I can process that way, in my sleep, although I think if I told a therapist honestly everything that goes on in my head while I dream I’d be put away. I remember another dream I had that same week of Trail Days. Karl and I had been together nine days, so it must have been May 13. In the dream, Karl was shot in the chest and bled out while I held my hands against his heart. I kept thinking, “at least we had nine days.” I’ve had similar dreams over the last couple of weeks, one in which half of an unrecognizable decomposing corpse was kicked around the middle of a road. The last two nights that he was in the hospital, I wasn’t able to sleep at all. I lay awake for hours, watching the clock, 2:30, quarter to four. It was easiest to sleep, if the least comfortable, when lying an arm’s length away on the hospital cot, able to reach over and squeeze his elbow.
The last two nights, since he’s been back, I’ve slept deeply and dreamlessly. He’s sleeping too, right now, most of the day and most of the night, but I’m thrilled just to sit next to him and listen to him breathe, to watch the vestigial meningitis-related grimaces he still makes, to watch the smiles and twitches cross his face. We even looked back and laughed last night about the one night when his brain actually went, that one terrifying night when I thought I might be losing the Karl I love forever. He remembers everything he said that crazy night, when he was so honest and so alone and so lost. A nurse said to me that day, off-handed, “Sometimes these things are reversible and sometimes they aren’t.” The statistic from when my brother had viral meningitis kept floating through my head: forty percent of people with meningitis have brain damage...
So now I hope I can keep my scary dreams away for a little while longer, that I can begin to sleep again. Visions of Secret still float at the edge of my consciousness, and I have to keep remembering the roots of this blog, that for us casting off doesn’t mean sailing but ridding ourselves of attachments: to the idea of perpetual health and invulnerability, maybe, to that precious boat, even. Nappy did call, though, and said he and his wife are praying for us. Secret, he said, is still fine, bobbing away at anchor. I pray she can make it through a couple more weeks of winter gales. That’s all we can do now, hope and trust that whatever path we should take be made clear.
(A link to the post I made the day Karl and I first began hiking together. You’ll notice I then took two weeks off. And that, my friends, is a picture of the infamous tree, under which our history was written.)
That’s how I feel now. I don’t think I realized just how afraid I’ve been this last month. I’ve been making my way through every day on the edge of terror, afraid to even acknowledge my fear, unable to put it into words. If I say it aloud, it will be true. The fear manifested itself as a very odd emotion for me, anger. I don’t generally get very angry, but I kept erupting these last weeks, once at the doctors in Chattanooga, another couple of times here at how powerless I felt to get around, to stay on top of all the paperwork, to wrestle with the telephone calls. One operator at MassHealth, well-meaning I’m sure, told me that they weren’t covering Karl’s Chattanooga hospital stay because he didn’t have a “life-threatening illness.” I hung up on him. I’ve dealt with it now, consulted with doctors and insurance advocates, and we’ll appeal the decision, but at that moment I pushed over the edge.
My dreams keep haunting me. I’m happy sometimes that I can process that way, in my sleep, although I think if I told a therapist honestly everything that goes on in my head while I dream I’d be put away. I remember another dream I had that same week of Trail Days. Karl and I had been together nine days, so it must have been May 13. In the dream, Karl was shot in the chest and bled out while I held my hands against his heart. I kept thinking, “at least we had nine days.” I’ve had similar dreams over the last couple of weeks, one in which half of an unrecognizable decomposing corpse was kicked around the middle of a road. The last two nights that he was in the hospital, I wasn’t able to sleep at all. I lay awake for hours, watching the clock, 2:30, quarter to four. It was easiest to sleep, if the least comfortable, when lying an arm’s length away on the hospital cot, able to reach over and squeeze his elbow.
The last two nights, since he’s been back, I’ve slept deeply and dreamlessly. He’s sleeping too, right now, most of the day and most of the night, but I’m thrilled just to sit next to him and listen to him breathe, to watch the vestigial meningitis-related grimaces he still makes, to watch the smiles and twitches cross his face. We even looked back and laughed last night about the one night when his brain actually went, that one terrifying night when I thought I might be losing the Karl I love forever. He remembers everything he said that crazy night, when he was so honest and so alone and so lost. A nurse said to me that day, off-handed, “Sometimes these things are reversible and sometimes they aren’t.” The statistic from when my brother had viral meningitis kept floating through my head: forty percent of people with meningitis have brain damage...
So now I hope I can keep my scary dreams away for a little while longer, that I can begin to sleep again. Visions of Secret still float at the edge of my consciousness, and I have to keep remembering the roots of this blog, that for us casting off doesn’t mean sailing but ridding ourselves of attachments: to the idea of perpetual health and invulnerability, maybe, to that precious boat, even. Nappy did call, though, and said he and his wife are praying for us. Secret, he said, is still fine, bobbing away at anchor. I pray she can make it through a couple more weeks of winter gales. That’s all we can do now, hope and trust that whatever path we should take be made clear.
(A link to the post I made the day Karl and I first began hiking together. You’ll notice I then took two weeks off. And that, my friends, is a picture of the infamous tree, under which our history was written.)
Monday, January 07, 2008
Boston, Massachusetts
I've put off posting this blog entry for too long, without quite knowing how to begin or having the courage to say in words what has turned out to be true. On Christmas Eve, I took Karl to the emergency room in Chattanooga with a severe headache. It had come on when he arrived, and was accompanied by fever, exhaustion, vomiting, and a complete lack of appetite. It turned out to be a kind of rare fungal meningitis.
He was released three days later and we decided to postpone our return tickets to the Bahamas in order to return to Massachusetts where we have health insurance and doctors. On the way back up he had a relapse. He's been now in the hospital here almost a week with no end in sight. Even once he's released, the doctors say he'll need a two-month course of hardcore anti-fungal drugs.
Obviously, my first concern is Karl's health and the second Secret. That being said, I dream every night of her. One recurring dream ends with three of us, who I don't know, plunging into crystal blue water, laughing, swimming to where I can see Secret nestled securely in an empty bay. I wake up in horror and fear, and gather my shreds of courage around me like a blanket.
I turned thirty this week. Everyone remembered--my family sent exquisite packages, Sally gave a card, and Karl, at one in the morning, reached over from his hospital bed to hold my hand where I lay on my cot next to him and said, "Happy birthday Melissa." I couldn't ask for a better present than that. Still, I feel like everything I love and have worked so hard for has been taken away. I was so close to grasping the dream, to holding it tightly in my hand, and its dissolved in my fingers.
It's at times like these that I'm glad I didn't name this journal "The Voyages of the Good Ship Secret" or some other such inane thing. I named it Casting Off for good reason. I can only believe that this is happening because I haven't cast off enough, haven't sacrificed enough, because God knew I need more things stripped away: my pride, my ambition, my sin.
I can only believe that I'm being punished for something. But maybe that's just New England at this time of year bringing out the worst in me. Perhaps there is simply too much Indian blood and too many whale bones scattered among the foundations of these cities. I've started dutifully taking St. John's Wort to combat my Seasonal Affective Disorder, but I'm not sure it's working. I keep wondering if it's named such after St. John of the Cross's dark night of the soul.
Why? I keep asking myself. Why now? Why here? What can it mean? Does it mean anything? Or does nothing mean anything and it's all a great big magician's trick? The cloth is whisked away and ta-da! Everything's disappeared. God as the great malevolent illusionist.
Have I traded all my hope for a lie? I can't believe that, so I don't. I'm writing late at night, alone. I don't know if these thoughts are fit for public consumption. It could be so much worse. I should be grateful, not angry. Karl's condition is completely treatable. He's only weak, not dying.
One of Karl's friends, on our drive up to the hospital, told me a story of another friend of his who's been diagnosed with bone cancer. His ribs are dissolving. The doctors say there's no point in even giving him chemotherapy until the pain gets too bad. It's only a matter of time for him.
By comparison, my complaints seem insignificant and selfish. Things could be so much worse. We have families and friends who love and support us. We have each other. We have our memories of the last four years. And we have hope. Or I try to have hope. I fight to have hope that one day that'll be me diving into the water to chase Secret again.
At church on Sunday, I kept breaking into tears every time the priest said, "Grant us thy peace." Grant me thy peace, Lord. As impossible as it is to imagine.
I remember the words of Keats: "Fled is that vision. Do I wake or sleep?"
And I cling to the words of the ancient Christian mystic, Dame Julian of Norwich, who says, "All shall be well and all shall be well and all manner of things shall be well."
He was released three days later and we decided to postpone our return tickets to the Bahamas in order to return to Massachusetts where we have health insurance and doctors. On the way back up he had a relapse. He's been now in the hospital here almost a week with no end in sight. Even once he's released, the doctors say he'll need a two-month course of hardcore anti-fungal drugs.
Obviously, my first concern is Karl's health and the second Secret. That being said, I dream every night of her. One recurring dream ends with three of us, who I don't know, plunging into crystal blue water, laughing, swimming to where I can see Secret nestled securely in an empty bay. I wake up in horror and fear, and gather my shreds of courage around me like a blanket.
I turned thirty this week. Everyone remembered--my family sent exquisite packages, Sally gave a card, and Karl, at one in the morning, reached over from his hospital bed to hold my hand where I lay on my cot next to him and said, "Happy birthday Melissa." I couldn't ask for a better present than that. Still, I feel like everything I love and have worked so hard for has been taken away. I was so close to grasping the dream, to holding it tightly in my hand, and its dissolved in my fingers.
It's at times like these that I'm glad I didn't name this journal "The Voyages of the Good Ship Secret" or some other such inane thing. I named it Casting Off for good reason. I can only believe that this is happening because I haven't cast off enough, haven't sacrificed enough, because God knew I need more things stripped away: my pride, my ambition, my sin.
I can only believe that I'm being punished for something. But maybe that's just New England at this time of year bringing out the worst in me. Perhaps there is simply too much Indian blood and too many whale bones scattered among the foundations of these cities. I've started dutifully taking St. John's Wort to combat my Seasonal Affective Disorder, but I'm not sure it's working. I keep wondering if it's named such after St. John of the Cross's dark night of the soul.
Why? I keep asking myself. Why now? Why here? What can it mean? Does it mean anything? Or does nothing mean anything and it's all a great big magician's trick? The cloth is whisked away and ta-da! Everything's disappeared. God as the great malevolent illusionist.
Have I traded all my hope for a lie? I can't believe that, so I don't. I'm writing late at night, alone. I don't know if these thoughts are fit for public consumption. It could be so much worse. I should be grateful, not angry. Karl's condition is completely treatable. He's only weak, not dying.
One of Karl's friends, on our drive up to the hospital, told me a story of another friend of his who's been diagnosed with bone cancer. His ribs are dissolving. The doctors say there's no point in even giving him chemotherapy until the pain gets too bad. It's only a matter of time for him.
By comparison, my complaints seem insignificant and selfish. Things could be so much worse. We have families and friends who love and support us. We have each other. We have our memories of the last four years. And we have hope. Or I try to have hope. I fight to have hope that one day that'll be me diving into the water to chase Secret again.
At church on Sunday, I kept breaking into tears every time the priest said, "Grant us thy peace." Grant me thy peace, Lord. As impossible as it is to imagine.
I remember the words of Keats: "Fled is that vision. Do I wake or sleep?"
And I cling to the words of the ancient Christian mystic, Dame Julian of Norwich, who says, "All shall be well and all shall be well and all manner of things shall be well."
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