THE LONG VERSION....
So, it was late September and I was terrifyingly close to the end of my year-long, cross-country road trip. After twelve months, thirty-four states, twenty-three thousand miles, and God-only-knows-how-many pages, I’d landed in Rehoboth Beach, Delaware and was trying desperately to end the trip well, which is to say to end the trip prolifically. I always explain to non-artists that you can tell a writer’s not really working enough when he responds to the question “What are you working on?” with a list—
“Well there’s a new play, and the beginning of a film script, and a few short stories, and the novel, of course….”
—and that’s sorta where I was… working on everything and nothing at all, writing constantly, it seemed, but not really accomplishing anything of note on the six or seven projects I was supposedly immersed in. I worked most of the day, every day, scribbling in my journal and pounding at my laptop, but forward motion on first drafts felt minimal.
Still, I was wandering around in a kind of giddy haze. The road trip had been truly remarkable—worthy of a blog of its own probably—and Rehoboth was proving to be the perfect final stop. For those of you who don’t know it, Rehoboth is more like a village that happens to be next to the ocean than a “beach town.” It’s peaceful and quaint and relaxing. I was staying in a gorgeous house offered to me by the always-generous Baird and Sarah Tipson and I was reveling in the quietness of it all, especially since I knew that soon I’d be heading home to Manhattan. I’d also been befriended by some of the locals, spectacular people with good vibes and great stories, and I spent a lot of time with them, sipping coffee and talking for hours about Bush and Harleys and Phish and whether Moses was a liar. It was great.
Then one night, while struggling with a piece for the theatre company I work with, something weird happened. I was typing and suddenly my left forefinger tensed up, folded down into my palm, and refused to move. It was sorta like a cramp, but not quite. I kept shaking my hand over my head, trying to loosen it up a little, but to no avail. Now, you have to understand that bizarre stuff like this is happens relatively frequently to my body—cramps and ticks and spasms come and go—so I didn’t think much about it. I just closed the laptop and went to bed.
The next day, though, I got up, made coffee, and sat down at the desk to find that the hand was still not letting me type. It was then that I decided to call NIH, just to check in. I was due for a visit anyway and sometimes it takes these weird things to remind me that I am, in fact, sick, and I need to be seeing the folks at NIH more regularly. So, I called them and explained to my nurse, Andy, what was going on with the hand and she scheduled me for an appointment in mid-October. Several hours later, however, my doctor called to say she was concerned about this new development. “Can you come in on Friday?” she asked. I was supposed to be leading a youth retreat for my buddy Drew’s church on Friday so I told her I’d check it out and call her back. “If I can’t come Friday, I’ll come Monday.”
Moments later, serendipitously, Drew called to say that a lot of kids were canceling on him and he wanted to reschedule the retreat.
And so, on Friday, I went to NIH and did all the usual stuff: physical exam with my NP Joanne, MRIs, meetings with my doctors. Andy had also set up appointments with Rehab medicine and neurology so that we could explore in depth what was happening with my hands.
One of the interesting things about having an illness like NF, an illness that manifests itself in slowly-progressing disability, is that it’s difficult to tell exactly how much symptoms have changed in a given period of time. It’s like aging. Since you stare at your own face in the mirror everyday, most of the time you can’t necessarily say that you look significantly older than you did a year ago. Then you see a photograph from last year’s Christmas Party and you think, “Where did all these wrinkles come from?” or “Is my hairline receding?” Suddenly you’re hyper-aware of any aging you might have done.
And that’s how it was at NIH. They had me do exercises to test the fine motor skills in my fingers, and I was shocked at their weakness. They pointed out to me the change in my hands—the muscle between my thumb and forefinger and the one between my wrist and pinky have atrophied noticeably. And suddenly I’m thinking to myself, How often in the last few years has my hand cramped up while writing in my journal? How often have I been unable to hold a pick while playing guitar? How often have I been too weak to pull on my socks in the morning?.... It wasn’t so much that I was worried, it was more that I was second-guessing information I’d been giving my doctors: Was it possible that, in my efforts to (as they say) ac-centuate the positive and e-liminate the negative, I’d been e-liminating some important information from my list of symptoms? Or was all of this relatively new?
Not that it mattered. What mattered was: Why is this happening? and What are we going to do about it? And it seemed like the answers to those questions were relatively easy to determine.
Some of you might not know this, but my tumors aren’t limited to my lower back and pelvis. Though those were the tumors we discovered first, and they are the largest, there are tumors (or fibromas as they’re called) running down the nerve pathways throughout my body, from my skull to my legs to my arms and everywhere in between. In the last few years, we’ve been keeping an especially close eye on the upper back, what the docs call “the brachial plexus,” and the upper spine, “the cervical spine.”
What it boils to is this: There are tumors around my cervical spine that are causing significant compression of the spinal cord. Though it doesn’t look like these tumors have grown dramatically in the last few years, the tumors doing most of the compressing happen to be intertwined with the nerve roots that control the forefinger, thumb, and middle finger. While the tumors down my arms may be part of the problem, my doctors think that the best place to start is the cervical spine.
So—we’ve scheduled a surgery for November 21st. The doctors will go in from my back and attempt to scrape away some of the growth from the tumors, relieving the compression on the spinal cord. They’ll also be operating on the spine itself in an attempt to create more room for the spinal cord and the nerve roots. I’ll post more details on the surgery itself sometime soon….
And that’s the long, rambling version of the story. Somewhat ironic, I know, that I should begin to loose the ability to write and type, but hopefully this surgery will take care of things, and I'll be back to my obsessive work schedule by Christmas.
Anyway, just wanted to keep everyone up to date. Check out this page in the coming weeks for news on what’s happening.
More soon.
- D
“Well there’s a new play, and the beginning of a film script, and a few short stories, and the novel, of course….”
—and that’s sorta where I was… working on everything and nothing at all, writing constantly, it seemed, but not really accomplishing anything of note on the six or seven projects I was supposedly immersed in. I worked most of the day, every day, scribbling in my journal and pounding at my laptop, but forward motion on first drafts felt minimal.
Still, I was wandering around in a kind of giddy haze. The road trip had been truly remarkable—worthy of a blog of its own probably—and Rehoboth was proving to be the perfect final stop. For those of you who don’t know it, Rehoboth is more like a village that happens to be next to the ocean than a “beach town.” It’s peaceful and quaint and relaxing. I was staying in a gorgeous house offered to me by the always-generous Baird and Sarah Tipson and I was reveling in the quietness of it all, especially since I knew that soon I’d be heading home to Manhattan. I’d also been befriended by some of the locals, spectacular people with good vibes and great stories, and I spent a lot of time with them, sipping coffee and talking for hours about Bush and Harleys and Phish and whether Moses was a liar. It was great.
Then one night, while struggling with a piece for the theatre company I work with, something weird happened. I was typing and suddenly my left forefinger tensed up, folded down into my palm, and refused to move. It was sorta like a cramp, but not quite. I kept shaking my hand over my head, trying to loosen it up a little, but to no avail. Now, you have to understand that bizarre stuff like this is happens relatively frequently to my body—cramps and ticks and spasms come and go—so I didn’t think much about it. I just closed the laptop and went to bed.
The next day, though, I got up, made coffee, and sat down at the desk to find that the hand was still not letting me type. It was then that I decided to call NIH, just to check in. I was due for a visit anyway and sometimes it takes these weird things to remind me that I am, in fact, sick, and I need to be seeing the folks at NIH more regularly. So, I called them and explained to my nurse, Andy, what was going on with the hand and she scheduled me for an appointment in mid-October. Several hours later, however, my doctor called to say she was concerned about this new development. “Can you come in on Friday?” she asked. I was supposed to be leading a youth retreat for my buddy Drew’s church on Friday so I told her I’d check it out and call her back. “If I can’t come Friday, I’ll come Monday.”
Moments later, serendipitously, Drew called to say that a lot of kids were canceling on him and he wanted to reschedule the retreat.
And so, on Friday, I went to NIH and did all the usual stuff: physical exam with my NP Joanne, MRIs, meetings with my doctors. Andy had also set up appointments with Rehab medicine and neurology so that we could explore in depth what was happening with my hands.
One of the interesting things about having an illness like NF, an illness that manifests itself in slowly-progressing disability, is that it’s difficult to tell exactly how much symptoms have changed in a given period of time. It’s like aging. Since you stare at your own face in the mirror everyday, most of the time you can’t necessarily say that you look significantly older than you did a year ago. Then you see a photograph from last year’s Christmas Party and you think, “Where did all these wrinkles come from?” or “Is my hairline receding?” Suddenly you’re hyper-aware of any aging you might have done.
And that’s how it was at NIH. They had me do exercises to test the fine motor skills in my fingers, and I was shocked at their weakness. They pointed out to me the change in my hands—the muscle between my thumb and forefinger and the one between my wrist and pinky have atrophied noticeably. And suddenly I’m thinking to myself, How often in the last few years has my hand cramped up while writing in my journal? How often have I been unable to hold a pick while playing guitar? How often have I been too weak to pull on my socks in the morning?.... It wasn’t so much that I was worried, it was more that I was second-guessing information I’d been giving my doctors: Was it possible that, in my efforts to (as they say) ac-centuate the positive and e-liminate the negative, I’d been e-liminating some important information from my list of symptoms? Or was all of this relatively new?
Not that it mattered. What mattered was: Why is this happening? and What are we going to do about it? And it seemed like the answers to those questions were relatively easy to determine.
Some of you might not know this, but my tumors aren’t limited to my lower back and pelvis. Though those were the tumors we discovered first, and they are the largest, there are tumors (or fibromas as they’re called) running down the nerve pathways throughout my body, from my skull to my legs to my arms and everywhere in between. In the last few years, we’ve been keeping an especially close eye on the upper back, what the docs call “the brachial plexus,” and the upper spine, “the cervical spine.”
What it boils to is this: There are tumors around my cervical spine that are causing significant compression of the spinal cord. Though it doesn’t look like these tumors have grown dramatically in the last few years, the tumors doing most of the compressing happen to be intertwined with the nerve roots that control the forefinger, thumb, and middle finger. While the tumors down my arms may be part of the problem, my doctors think that the best place to start is the cervical spine.
So—we’ve scheduled a surgery for November 21st. The doctors will go in from my back and attempt to scrape away some of the growth from the tumors, relieving the compression on the spinal cord. They’ll also be operating on the spine itself in an attempt to create more room for the spinal cord and the nerve roots. I’ll post more details on the surgery itself sometime soon….
And that’s the long, rambling version of the story. Somewhat ironic, I know, that I should begin to loose the ability to write and type, but hopefully this surgery will take care of things, and I'll be back to my obsessive work schedule by Christmas.
Anyway, just wanted to keep everyone up to date. Check out this page in the coming weeks for news on what’s happening.
More soon.
- D
posted by Dan at 1:31 PM
3 Comments:
Dude. This is brilliant ...
Welcome to the blog world!!!!!
(and that sperm count remedy site sounds awesome! Hee.)
Dan,
Nice to hear from you regardless of the circumstances. Thanks for including me in on this and if there's anything I can do- or if you just want to hang out give me a call. 917-405-4408.
Gregg Mozgala
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