October 18, 2003
Pull the world out from under me...
For those of you who have been following my recent struggle with severe neuropathic pain in my legs, I have an update. On Friday I was told by my neurologist that the MRI reveals arachnoiditis. It is a severe inflammation of the arachnoid layer, a membrane surrounding the spinal cord and spinal fluid. The inflammation is sometimes seen in people who have had multiple spinal cord surgery (I've had four), and is caused by scar tissue buildup.
I was floored at the news that there is no treatment for it. More surgery would simply multiply the problem. My neurologist knew of no treatment for it, and felt that it would not improve.
I don't even need to say what a huge impact this has made on me. All I can think of now is that this monolithic struggle that I've been under for the last five months may now stretch into a lifetime. I just can't do that. I feel sick just thinking about it. Is this what my life is about... being bedboud and heavily medicated for months at a time because there is no treatment for my pain?
My friend Fariyal said, "you're not going down this way. It's not allowed. This is not how it is supposed to be for you!" I could have kissed her for saying that. I am not through the grief part yet, but part of me is fully into anger - not at God but at pain, at doctors, at this horribly twisted and cruel world in which pain is not simply a natural part of life but malfunctions into a pathology all of itself. Who the hell are they to say that there's nothing left that they can do for me?
No. I have things to do. Doesn't my body know that?
For those of you who have been following my recent struggle with severe neuropathic pain in my legs, I have an update. On Friday I was told by my neurologist that the MRI reveals arachnoiditis. It is a severe inflammation of the arachnoid layer, a membrane surrounding the spinal cord and spinal fluid. The inflammation is sometimes seen in people who have had multiple spinal cord surgery (I've had four), and is caused by scar tissue buildup.
I was floored at the news that there is no treatment for it. More surgery would simply multiply the problem. My neurologist knew of no treatment for it, and felt that it would not improve.
I don't even need to say what a huge impact this has made on me. All I can think of now is that this monolithic struggle that I've been under for the last five months may now stretch into a lifetime. I just can't do that. I feel sick just thinking about it. Is this what my life is about... being bedboud and heavily medicated for months at a time because there is no treatment for my pain?
My friend Fariyal said, "you're not going down this way. It's not allowed. This is not how it is supposed to be for you!" I could have kissed her for saying that. I am not through the grief part yet, but part of me is fully into anger - not at God but at pain, at doctors, at this horribly twisted and cruel world in which pain is not simply a natural part of life but malfunctions into a pathology all of itself. Who the hell are they to say that there's nothing left that they can do for me?
No. I have things to do. Doesn't my body know that?
October 14, 2003
Bookshelf
I finished Red Rabbit on Saturday, and as a Tom Clancy fan, I found it abbreviated, fluffy and, well, fun, compared to his normal fare. Having read The Bear and the Dragon, I'm wondering if our Tom is now giving his ideas to a ghost writer to write while he enjoys some fame and fortune. His latest books seem so unlike all of those before. Less technical writing, less military intrigue, less in the way of interwoven plotlines, more profanity, and in the case of The Bear, more sex.
My friend Greg recommended a book to me yesterday, out of the blue, called Things Unseen, by Mark Buchanan. His followup to Your God Is Too Safe, Things is a book about being Heaven Bent while being Earth-bound. This is a subject very very close to my current situation, and I'm excited to read it. Thanks Greg.
I finished Red Rabbit on Saturday, and as a Tom Clancy fan, I found it abbreviated, fluffy and, well, fun, compared to his normal fare. Having read The Bear and the Dragon, I'm wondering if our Tom is now giving his ideas to a ghost writer to write while he enjoys some fame and fortune. His latest books seem so unlike all of those before. Less technical writing, less military intrigue, less in the way of interwoven plotlines, more profanity, and in the case of The Bear, more sex.
My friend Greg recommended a book to me yesterday, out of the blue, called Things Unseen, by Mark Buchanan. His followup to Your God Is Too Safe, Things is a book about being Heaven Bent while being Earth-bound. This is a subject very very close to my current situation, and I'm excited to read it. Thanks Greg.
The Winter of My (dis)Content
I was in my kitchen on Saturday night, and caught myself looking through the window at the foggy street outside. It was dark, wet with fog and lit eerily by an orange streetlight. Words that had been unwelcome on Wednesday morning when a fellow at church had fiercely encouraged me to find something in my person to give thanks for, despite the enormous personal, spiritual and physical crisis I am walking through, came echoing back into my head. Although his delivery was uncomfortable and unwelcome, the message is still true. I found myself sitting in the dark, staring out at the fog, and giving thanks for the sense of security and warmth that it gave me. Only minutes before I had been weeping, begging to be let out of my pain.
I found myself journalling for more than an hour, simply talking to God about what he has blessed me with. It was an amazing conversation.
Only now have I found words to describe what it was like to stand (sit) at my kitchen window staring out at the fog (from Mark Buchanan):
There you are, standing at a window watching oak leaves flutter down from dark boughs, and without warning your whole body fills with a longing for something you can’t name, something you’ve lost but never had, that you’re nostalgic for yet don’t remember. You sense a joy so huge it breaks you, a sorrow so deep it cleanses.
A sorrow and longing for my heavenly dwelling so deep that it cleanses.
I have seen the light through the crack in my cell and for a moment it warmed my face. It still warms my soul.
For those who are wondering, I have now had two MRI's, and as yet have had no conclusive results to indicate the cause of my pain. Friday I meet with the neurologist again, and hopefully will know more.
I was in my kitchen on Saturday night, and caught myself looking through the window at the foggy street outside. It was dark, wet with fog and lit eerily by an orange streetlight. Words that had been unwelcome on Wednesday morning when a fellow at church had fiercely encouraged me to find something in my person to give thanks for, despite the enormous personal, spiritual and physical crisis I am walking through, came echoing back into my head. Although his delivery was uncomfortable and unwelcome, the message is still true. I found myself sitting in the dark, staring out at the fog, and giving thanks for the sense of security and warmth that it gave me. Only minutes before I had been weeping, begging to be let out of my pain.
I found myself journalling for more than an hour, simply talking to God about what he has blessed me with. It was an amazing conversation.
Only now have I found words to describe what it was like to stand (sit) at my kitchen window staring out at the fog (from Mark Buchanan):
There you are, standing at a window watching oak leaves flutter down from dark boughs, and without warning your whole body fills with a longing for something you can’t name, something you’ve lost but never had, that you’re nostalgic for yet don’t remember. You sense a joy so huge it breaks you, a sorrow so deep it cleanses.
A sorrow and longing for my heavenly dwelling so deep that it cleanses.
I have seen the light through the crack in my cell and for a moment it warmed my face. It still warms my soul.
For those who are wondering, I have now had two MRI's, and as yet have had no conclusive results to indicate the cause of my pain. Friday I meet with the neurologist again, and hopefully will know more.
