For the last few weeks, I have been writing up a storm. Two drafts of a novella aren't a bad month's production for me. I've been working on my fantasy world as well. With the introductory short stories finished or ready for serious feedback anyway, I started the first novel in the "Book of Names" series. I have been keeping crazy hours working for 24-36 hours at a time and then collapsing in pain and exhaustion.
It wasn't that long ago that I was on the edge of despair. Not only was I in constant extreme pain but I was accomplishing nothing as far as I was concerned. Those of you who have been reading since the beginning might remember the Trinity of Coping. First, you need faith in something to help you through. That's double for me with religious faith and faith in Melissa whom I call my health coach half jokingly. The second and third parts of this trinity are accomplishments and treats. If you accomplish nothing, it leads to feelings of total helplessness which cause you to lose faith among other things. Maybe it's just how I was raised but I find it tough to justify my existence at times even though I know you're not supposed to do that.
The third element is treats. Everyone needs something pleasant to anticipate and that's never more true than it is for someone who is in almost constant pain. If you're lying in bed embracing the peaceful nothingness of meditation because every thought brings too much pain, you need to know that something good will happen soon. We've had some highs and lows at this Stapleford household. The highest high was the week spent soaking in the peace down at Ocean City. The lowest point was losing our cable TV which had been such a dependable source of entertainment. I'm lucky enough to live with my beloved wife who understands this principle.
Recently, I've been working on accomplishments to the best of my ability. As far back as Christmas or Easter, I started a major push on the "Book of Names" project. I asked for and got colored pencils so that I could draw a map on some hex paper I'd printed. This allowed me to determine things like where the characters started, where they needed to end up and what was in between. I've had a book on world creation for a few years which I used to generate some things like what weather to expect and how to keep characters who are hundreds of miles apart on the same timeline.
Then, of course, I had the "Twice in a Lifetime" concept pop into my head. It didn't seem like something I'd get around to writing any time soon but it turned out to be fun. Even if what I've written is utter dreck, I am a writer and producing dreck is part of the process. There's a quote about writing first drafts where someone once said, "I give myself permission to write a shitty first draft." It's okay as long as the second draft is less shitty and so on.
So, what do you think happens when I write for days at a time often until I'm overcome by pain and fatigue? Well, I just told you. I'm overcome by pain and fatigue. I just spent most of two days lying down in a room with no clocks meditating and sleeping back and forth. When the pain is too much to stand while conscious, it's best to be unconscious. There were a number of days lost that way earlier in the week where I was in bed with a view of the clock. The ratio is probably three or four to one of days lost to productive days. Otherwise, I spend all my time lounging about in discomfort severe enough to require all the same medication.
The price is not right but there's no point in dwelling on that. I've already chosen a profession where the perceived cost of entry has dropped so low that there is a belief that anyone can do it. Oddly enough, that actually raises the bar on what you need to do in order to get in. Fewer people are reading fewer authors while the number of people who consider themselves writers has skyrocketed. The odds suck and most people who fail do so because they spend more time thinking of the odds than writing.
The price is too high but I wouldn't be me if I failed to pay it. The price for normal life is way too high for all of us with chronic pain. In order to get something more out of life, I have to be willing to pay an even higher price. Pardon the slightly cynical laugh that you couldn't hear. None of this matters as long as I'm writing dreck except for the fact that I do this sort of thing for myself anyway. I find an amazing degree of joy in creating worlds. Perhaps I enjoy creating people interacting in this world even more. It makes up for a lot to be able to write about a life so different from mine that I could never have lived it. At the same time, these fictional people have to solve the same problems as you and I.
Later this month, I'm going to hang out with my best friend for a few hours in his hometown. It's going to cause me extra pain that I could avoid by not taking the trip. Life is pain so, if you want to live, pain is unavoidable.
The next thing I write might just be about how to cut down on pain at the margins. It's not all about popping pills although they do help the most.
Sunday, August 19, 2012
Monday, August 13, 2012
Not the New Normal
After a July so full of pain that I could hardly do anything, I've written two drafts of a new fictional project in August. I hesitate to call it a novel at a mere 185 pages but it could grow into one through future drafts. I didn't bring it up here to brag about it or anything. I'm bringing it up because I've been able to exceed my expectations by so much here in August and because of the topic. It's a story of love and loss due to a fictional terminal disease.
I'm a writer. It's how I self identify and how I choose to interact with the world at large. I'm also someone who lives with chronic pain. I've struggled with the idea of writing a novel about someone surviving my own illness and thriving but that just seemed like wish fulfillment. My abortive attempts felt more like times when I tried to write football stories with me as a star quarterback.
My favorite author, Stephen R. Donaldson, once wrote that he needs the connection of two ideas for a story to come to life. He calls those two ideas the familiar and the exotic. His most famous books are about a leper hero named Thomas Covenant who refuses to accept the magical land he's transported to as real. Donaldson wrote that his father was a specialist doctor in a place where leprosy was common so that was the familiar. The exotic was the idea of someone who didn't believe the story. That was the genesis of "Thomas Covenant, the Unbeliever."
I liked the idea of the familiar and the exotic so I started off with the idea of writing about a sick and dying person. I thought that the exotic might be switching roles and having the sick person not be the protagonist. I would write about a caretaker who loved her instead but that wasn't exotic enough. There was one time when I believed that Melissa had cancer and the idea stuck with me long after cancer was ruled out and the real problem was healed.
The exotic came to me in the form of the "Twilight" books. Why not write about young love and focus my ideas on loving descriptions of people. Forget writing about real looking people! I needed to let myself write through the eyes of someone who had just fallen madly in love for the first time. There was also no reason to be realistic about the illness that's killing her. I needed symptoms that would make a reader wince. I also needed to write something to show how being disabled is okay in the eyes of those who love you. It may not be easy to care for someone like me but that doesn't stop Melissa from loving me.
My main problem with the "Twilight" books is that they promote the idea that a 17 year old can know exactly what she needs in life. I was sure I knew everything at 17 and I can't tell you how many things I had dead wrong. Therefore, I decided to play out a little dark fantasy of my own. If I were to die and leave Melissa behind, I would want her to be happy. In my moments of doubt, I wonder if it might not be better for her to find happiness with someone else now. That's just the doubt talking, of course. Why not give my healthy protagonist a happy ending of sorts.
Since he's not the disabled one, why not make him a tiny bit of a hero? It was the "Twilight" influence again. Why not show that someone who is terminally ill holding the attention of the guy who is just a little tough? Why not mix in some action to ease the "in your face" morals of the story? I would have absolutely no problem with writing a commercial success, of course.
There's a moral to this story as well. I feel crappy again. One part of the trinity of surviving chronic pain is accomplishments. Therefore, I used my insomnia to be productive in between sessions of day sleeping and twitching and I wrote between severe pain attacks. Now I feel crappy but I'm still pleased with myself. It's easier to feel crappy after wearing myself out. It's too damn hard when I start off that way.
I'm a writer. It's how I self identify and how I choose to interact with the world at large. I'm also someone who lives with chronic pain. I've struggled with the idea of writing a novel about someone surviving my own illness and thriving but that just seemed like wish fulfillment. My abortive attempts felt more like times when I tried to write football stories with me as a star quarterback.
My favorite author, Stephen R. Donaldson, once wrote that he needs the connection of two ideas for a story to come to life. He calls those two ideas the familiar and the exotic. His most famous books are about a leper hero named Thomas Covenant who refuses to accept the magical land he's transported to as real. Donaldson wrote that his father was a specialist doctor in a place where leprosy was common so that was the familiar. The exotic was the idea of someone who didn't believe the story. That was the genesis of "Thomas Covenant, the Unbeliever."
I liked the idea of the familiar and the exotic so I started off with the idea of writing about a sick and dying person. I thought that the exotic might be switching roles and having the sick person not be the protagonist. I would write about a caretaker who loved her instead but that wasn't exotic enough. There was one time when I believed that Melissa had cancer and the idea stuck with me long after cancer was ruled out and the real problem was healed.
The exotic came to me in the form of the "Twilight" books. Why not write about young love and focus my ideas on loving descriptions of people. Forget writing about real looking people! I needed to let myself write through the eyes of someone who had just fallen madly in love for the first time. There was also no reason to be realistic about the illness that's killing her. I needed symptoms that would make a reader wince. I also needed to write something to show how being disabled is okay in the eyes of those who love you. It may not be easy to care for someone like me but that doesn't stop Melissa from loving me.
My main problem with the "Twilight" books is that they promote the idea that a 17 year old can know exactly what she needs in life. I was sure I knew everything at 17 and I can't tell you how many things I had dead wrong. Therefore, I decided to play out a little dark fantasy of my own. If I were to die and leave Melissa behind, I would want her to be happy. In my moments of doubt, I wonder if it might not be better for her to find happiness with someone else now. That's just the doubt talking, of course. Why not give my healthy protagonist a happy ending of sorts.
Since he's not the disabled one, why not make him a tiny bit of a hero? It was the "Twilight" influence again. Why not show that someone who is terminally ill holding the attention of the guy who is just a little tough? Why not mix in some action to ease the "in your face" morals of the story? I would have absolutely no problem with writing a commercial success, of course.
There's a moral to this story as well. I feel crappy again. One part of the trinity of surviving chronic pain is accomplishments. Therefore, I used my insomnia to be productive in between sessions of day sleeping and twitching and I wrote between severe pain attacks. Now I feel crappy but I'm still pleased with myself. It's easier to feel crappy after wearing myself out. It's too damn hard when I start off that way.
Saturday, August 4, 2012
The New Normal
I'm going to use certain terms here in this blog and define them as I go. These are personal definitions for things that take place in my life. Where possible, I stick to accepted medical terms but I just don't know them all. My doctors are also too busy to act as my medical dictionary.
The point is that I'm worried about establishing another new normal. You might also call it my baseline level of illness. This is how sick I can expect to be on a daily basis without factoring in any aggravating or mitigating circumstances. Since pretty much any day would have both aggravating and mitigating circumstances, it's a lot of guess work. Experience and input from doctors does help make it an educated guess at least.
A shift in my baseline illness isn't always easy to detect. There are too many aggravating and mitigating factors to explain plus there is a reliable degree of seasonal variation. There are signs that point to a change and I can't help but notice them. It's the sort of information my doctors really need. One sign is that I have a series of good or bad days in a row under a variety of conditions. Another sign is that my coping strategies start to fail. You could call that a bad sign.
I've been going downhill since the beginning of July and this scares me. It's too early for my Fall symptom changes and I have been doing all I can to be better. My summer symptoms are dominated by massive crippling headaches. They can be vise grip headaches where it feels as if someone is trying to crush my scalp or ice pick headaches where the pain is concentrated on a tiny point as if someone is trying to jab...you get the picture.
Right now, I'm suffering from a classic Winter symptom where it feels as if my bones are aching from the inside out. It is worst at the joints but all the major bones seem to come into play. My upper body is worse than the lower probably because I use it more. Then again, I keep my pain patch on my thigh these days so it might have more effect on the lower body. It's better to consider all possibilities but I think it's the greater use.
Yesterday, I had the dizzy headache. There is an area of pain that seems to contain the whole Bermuda triangle (Nope. I'm not a believer. If you combine the number of flights in that area with the unreliable extreme weather, you're just going to lose people.) for my body's internal compass. I can't tell up from down or left from right. Normally, I can still putter along or cling to something until it passes. Yesterday, I had it hit me in the dark right beside the bed. It wasn't the first attack of the day but it was the worst. Earlier, I'd fallen going up the stairs but it was a nice soft fall forward.
The fall on the bed would have been far worse if there hadn't been such a nice surface to land on. I could not get up from my position lying face down. Thankfully, Melissa was there to talk me through it because the Bermuda triangle drowns out all thought. I let gravity slide me off the bed to my knees but that didn't help. I was stuck clinging to the side like I was trying to climb into a boat. Eventually, I used my contact with the bed to guide me up all the way on it and crawled to my pillow. I get angry with myself in situations like this. My inner critic insists that I must look like such a faker to my audience (of one) and so I try to fight my way out of it. It's almost always a bad idea.
I know I can't be the only one with such a harsh inner critic so I hope the rest of you take heart in this. Lay there as long as you need to lay there. Anyone who wants to give you a hard time needs to take a long look inside themselves. I discovered that I was okay lying completely flat but the mere thought of elevating made me dizzy so I just stayed where I was. Melissa coached me through my momentary impatience but she's not always there. Getting up before you're ready is just asking for another fall. I've had falls in doctors' offices where the staff was ready to call an ambulance but I assured them I was okay. All they wanted from me was for me not to hurry.
So, I've had terrible headaches well beyond my normal range that lasted entirely too long. I had severe dizzy symptoms. (I'm trying to relax myself through more of them trying to set in right now. The meditative breathing is helping some.) I'm spending absurd amounts of time in bed. Is this another change in my baseline illness? Am I losing more ground? I don't know yet because there has been a rash of severe weather and I react badly to that.
My confession is that the thought of this as the new normal sent me spiralling downward. I started thinking seriously about death but not in a suicidal way. I was just thinking about signing a DNR order (do not resuscitate) in view of my overall health. With my family history, I'm pretty much guaranteed a heart attack or stroke at a young age. Someone asked about how we handle the things we can't control on a mailing list I enjoy and I tried to answer. My inner critic (in my mother's voice) insists that I put far too many things in that category but my doctors disagree. They agree with me that I can make some improvements at the margins but my main health problems are beyond my control. Of course, signing a DNR without having any life threatening condition in place might not even be allowed so I went to see my coach.
She was struggling with Facebook and this made me think of a few things. One is that I have had major improvements in my activity level since a low last winter. There were days when I only got out of my comfy chair to use the bathroom. I walked up the stairs without thinking about it or planning anything. Melissa resolved her own Facebook issue using methods I taught her. Maybe I should continue trying to cope with things the way they are.
There's plenty of time after a first heart attack or stroke doesn't kill me to sign a DNR or create a living will. There's also no reason why I can't have some quality of life after the worst case scenario. The methods I taught Melissa to control her Facebook issue didn't even exist until after I got sick. I can continue to contribute even if things got so much worse. My pain doc assured me that there are additional steps left to take to control my symptoms.
When I was going into my third year of illness, I knew in my heart that I couldn't survive a third year. That was the beginning of 2003 and things have gotten worse since then. Thankfully, they've also gotten better or else I wouldn't have made it.
Even another retreat to a new normal doesn't have to stop me. Maybe I need to move out of this house that causes so much stress. Why does someone like me live with stairs on a daily basis anyway? There's always a next step. Sometimes, you just have be there to see what it will be. Until then, I will bitch, moan and soldier on.
The point is that I'm worried about establishing another new normal. You might also call it my baseline level of illness. This is how sick I can expect to be on a daily basis without factoring in any aggravating or mitigating circumstances. Since pretty much any day would have both aggravating and mitigating circumstances, it's a lot of guess work. Experience and input from doctors does help make it an educated guess at least.
A shift in my baseline illness isn't always easy to detect. There are too many aggravating and mitigating factors to explain plus there is a reliable degree of seasonal variation. There are signs that point to a change and I can't help but notice them. It's the sort of information my doctors really need. One sign is that I have a series of good or bad days in a row under a variety of conditions. Another sign is that my coping strategies start to fail. You could call that a bad sign.
I've been going downhill since the beginning of July and this scares me. It's too early for my Fall symptom changes and I have been doing all I can to be better. My summer symptoms are dominated by massive crippling headaches. They can be vise grip headaches where it feels as if someone is trying to crush my scalp or ice pick headaches where the pain is concentrated on a tiny point as if someone is trying to jab...you get the picture.
Right now, I'm suffering from a classic Winter symptom where it feels as if my bones are aching from the inside out. It is worst at the joints but all the major bones seem to come into play. My upper body is worse than the lower probably because I use it more. Then again, I keep my pain patch on my thigh these days so it might have more effect on the lower body. It's better to consider all possibilities but I think it's the greater use.
Yesterday, I had the dizzy headache. There is an area of pain that seems to contain the whole Bermuda triangle (Nope. I'm not a believer. If you combine the number of flights in that area with the unreliable extreme weather, you're just going to lose people.) for my body's internal compass. I can't tell up from down or left from right. Normally, I can still putter along or cling to something until it passes. Yesterday, I had it hit me in the dark right beside the bed. It wasn't the first attack of the day but it was the worst. Earlier, I'd fallen going up the stairs but it was a nice soft fall forward.
The fall on the bed would have been far worse if there hadn't been such a nice surface to land on. I could not get up from my position lying face down. Thankfully, Melissa was there to talk me through it because the Bermuda triangle drowns out all thought. I let gravity slide me off the bed to my knees but that didn't help. I was stuck clinging to the side like I was trying to climb into a boat. Eventually, I used my contact with the bed to guide me up all the way on it and crawled to my pillow. I get angry with myself in situations like this. My inner critic insists that I must look like such a faker to my audience (of one) and so I try to fight my way out of it. It's almost always a bad idea.
I know I can't be the only one with such a harsh inner critic so I hope the rest of you take heart in this. Lay there as long as you need to lay there. Anyone who wants to give you a hard time needs to take a long look inside themselves. I discovered that I was okay lying completely flat but the mere thought of elevating made me dizzy so I just stayed where I was. Melissa coached me through my momentary impatience but she's not always there. Getting up before you're ready is just asking for another fall. I've had falls in doctors' offices where the staff was ready to call an ambulance but I assured them I was okay. All they wanted from me was for me not to hurry.
So, I've had terrible headaches well beyond my normal range that lasted entirely too long. I had severe dizzy symptoms. (I'm trying to relax myself through more of them trying to set in right now. The meditative breathing is helping some.) I'm spending absurd amounts of time in bed. Is this another change in my baseline illness? Am I losing more ground? I don't know yet because there has been a rash of severe weather and I react badly to that.
My confession is that the thought of this as the new normal sent me spiralling downward. I started thinking seriously about death but not in a suicidal way. I was just thinking about signing a DNR order (do not resuscitate) in view of my overall health. With my family history, I'm pretty much guaranteed a heart attack or stroke at a young age. Someone asked about how we handle the things we can't control on a mailing list I enjoy and I tried to answer. My inner critic (in my mother's voice) insists that I put far too many things in that category but my doctors disagree. They agree with me that I can make some improvements at the margins but my main health problems are beyond my control. Of course, signing a DNR without having any life threatening condition in place might not even be allowed so I went to see my coach.
She was struggling with Facebook and this made me think of a few things. One is that I have had major improvements in my activity level since a low last winter. There were days when I only got out of my comfy chair to use the bathroom. I walked up the stairs without thinking about it or planning anything. Melissa resolved her own Facebook issue using methods I taught her. Maybe I should continue trying to cope with things the way they are.
There's plenty of time after a first heart attack or stroke doesn't kill me to sign a DNR or create a living will. There's also no reason why I can't have some quality of life after the worst case scenario. The methods I taught Melissa to control her Facebook issue didn't even exist until after I got sick. I can continue to contribute even if things got so much worse. My pain doc assured me that there are additional steps left to take to control my symptoms.
When I was going into my third year of illness, I knew in my heart that I couldn't survive a third year. That was the beginning of 2003 and things have gotten worse since then. Thankfully, they've also gotten better or else I wouldn't have made it.
Even another retreat to a new normal doesn't have to stop me. Maybe I need to move out of this house that causes so much stress. Why does someone like me live with stairs on a daily basis anyway? There's always a next step. Sometimes, you just have be there to see what it will be. Until then, I will bitch, moan and soldier on.
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