Rather than my usual idea-laden post, I will only dip my toes into the deep waters for a second, but, touch the rest of the time on a little "life as it is today". The past two weeks have really been a blur. No, this isn't just the busyness that has come about because of introducing hospice, beginning (again) to work from home full time, and, school starting up. Those things are all grounds enough to keep us on our toes. But, as a part of trying to find that seemingly mystical line between medicated-but-functional and nacroleptic-but-at-my-desk I have really been going back and forth on my medications a lot and it has messed up my sense of time a good bit.
The main medication I use for pain management is something called dilaudid. As I learned recently, it's basically opium. Now, I am not a fan of the opiods because I think, with me, addiction could be a real, potential issue. I was reminded of this the other day. I had been scheduled to get (and been getting delayed from) a transfusion. Monday was labs, and, it was late Wednesday afternoon before all the confusion (or incompentence on one person's part) had been resolved. As I got ready to leave and drive down--it takes about 30 minutes in decent traffic to get to what we call big Baylor downtown from the house--I felt okay. Within 5 minutes of leaving the house one of these fits I had been having where I literally get so tired I canno keep my eyes open kicked in. After stopping to get something to eat I debated on whether to tempt fate and drive in spite of my condition. Thankfully, what two firing brain cells I had still working fired and I called Kerri to see if she could drive me down.
After picking me up we left. I threw up in the car, which I never do, unless I'm sick (very, very rare) or on chemo (which I have been off of for almost 11 months now). Either way, something else was going on. When we got there I started to feel better, but, in general, I felt horrible, couldn't keep my eyes open, was literally falling asleep at the keyboard. Just, nothing good. I was really worried my disease was progressing A LOT faster than everyone thought. And, then it hit me, the sweats, the bouts of fatigue, the out of it sensation. Ah, the dilaudid. I had been incrementally uping the doses. I was drugging myself to sleep. So, I vowed not to take any more. Voila, the next day, I was an achy dude, but, only got a little tired in the morning...which, with as much drugs as I had been taking, would not have surprised me. I seem to get tiny packets of this stuff stored in fat reserves, and, I'll hit one of these and basically, I'm dosed up again without actually having had taken any medication. Yay, the funs of drugs and daily life.
So, with my main problem identified, I met with a pain management specialist from up here. Time for a little rabbit trail. I consider myself to be a reasonably bright person. Not a genius most of the time but sparkling moments on occasion. And, not an idiot with bouts of stupidity from time to time to make me wonder. But, capable of recognizing smart people. The pain management doctor showed up after much fanfare was made about him. The nurses seem to be like groupies with regards to this guy. They get all excited and call each other to come bask at his presentation. I kind of cracked up watching this dynamic having seen the "brilliance effect" before. Nonetheless, I figured, hey, I can get some help from a good doctor and maybe have a good conversation along the way. I don't get real, deep conversations a lot. Most people either can't or won't engage in them, and, when they come along I cherish those moments.
With that anticipation in mind I went into the conversation with a keen awareness of this one little observation I have made over time: really smart people come in two types: 1) those with whom you can truly interact, and, have real conversations. There is dialogue, interchange of ideas, collaborative thinking, and, imagining. and 2) those for whom you are a part in their reality and they just put on their "show". The show I refer to here is whatever this person is brilliant at. If it is science, you learn science not from interacting with and sharing ideas. You learn from them by just being around them and watching them do their presentation. They don't share. They perform. Now, I recall hearing that 2 years play along side each other not together. They may appear to play together, but, it is not really interaction, but, more just being present in the same space. The whole thing here is that when you meet a smart person, you are either a person or a thing. There rarely seems to be a crossing between these two worlds. And, I have little tolerance for smart people who like to perform. I have more important things to do with my life, especially now, than to watch you do a song and dance.
Well, it took me about 5 minutes to realize this guy had a show to perform. The funny thing was he actually had a part in the show where he stopped and talked about how he was here to learn from me, the patient, and, it was really our show where they were there to learn from him. I had to give it to him. It was a well-done presentation. It even had the trappings of humility, but, it was just a part of the show. At any rate, I tried to actually interact with him and there was no real dialog. I would try to interject, but, the thing is, I had to have the right answer to the question for the show to go on. If I didn't answer correctly, he would answer his own question as needed and move on. Again, I watched the display of human nature in action. It astounds me at times. Honestly, I would rather I were wrong about smart people. I wish they all truly thought of others as others. I just see it all too often. I have to be honest with myself and realize that what I am looking for is a rare combination of traits and I shouldn't expect to see it that often. And, as I said earlier, I am very thankful for those relationships where I can find someone to share ideas with.
The last notable thing has to with my general sense of what's going on. As has been the case for some time now, no one really knows how long I have. In a sense, I am like everyone else in the world. I am dying. But, then, so aren't we all? My challenge is living with disease. Knowing I do not have "unlimited" time and energy I live with the awareness that I am neither blissfully unaware of this mortality that plagues us all nor am I am the cyclops clearly able to see my day of death approaching. It is as if this dark shadow has been released into my life. I look at all things with a slightly dimmed perspective. This morning, while lying in bed, I realized, had I not been sick, I'd probably have been up at 5:30 running some 90-120 minute workout getting ready for a fall racing series. Without thinking much about it I could loosely envision what part of my training season I would be in. How I would have felt from my workout. What sort of times I would have run. How the weather would have felt on my skin. Et cetera. Et cetera. Et cetera. And, in reality, I lied in bed.
Is it this stark contrast of the alternate, imagined reality I live in my head--a world in which I had no cancer and life had continued on its merry way--I have this reality, the one I inhabit. With those opaque orange bottles and white tops. Sweat from drugs. Huge holes in my days and weeks spent talking to people I have no desire to see or know. The inability to play with my kids. The slow letting go of hopes and dreams. The constant restraint I have to exert in life when it comes to my willingness to join things I would enjoy, but, know, in the back of my head, I could never have the energy to truly partake in. This so called life I inhabit is one I do not know how to call home or in which I belong. In my alternate reality, I finally felt a sense of belonging. I had come to peace with who I was, what I did and life in general. Now, I neither belong among the living, for theirs is a limitless world, nor the truly dying, for theirs is but a singularity, focused entirely on an end. No, I am a man of limited means. One who belongs neither here nor there. And, in this place, I know not who I am or how to belong.
What is it in us that seeks belonging? Why do we need to feel at home? I know Jesus tells us we live in the world but are not of it. This, however, speaks to a different point than the one I struggle with at the moment. I see life very confused and am lost in my response to life. I have vowed to not let death or dying stop me from living. In the process of discovering what the means, however, I keep coming to dilemmas, paradoxes, crossroads, and, questions. Some of these are unanswerable. Some can only be answered by God, either on this side of the dissolution of being and others on that side when we are with Him in fullness. Either way, the regularly scheduled visits of uncertainty, confusion, and, puzzlement is not like one from normal life, perhaps something you may encounter in intellectual puzzle or everyday life. These carry with them a different weight and swagger. It is this weird authority, this weird stance such questions take I do not know how to contend with yet. In seeking answers, that is, resolution, familiarity, and, the secret handshakes of understanding that come with having warred in an amicable way, there is an end to be met. In my world, ends seems unfinable and that, I believe, is the root of my unbelonging. When in a strangeland no one tells you the rules and you must invent your own, how would you define belonging? Or, would you even try?
There is that temptation to push back to the world of the known, the familiar. In being bound by disease, that never goes far. And, a darker temptation, one I am not drawn to, to go down the darker roads, the ones that end with no more life, sits at the other edge of the crossroads. So, you grow weary standing in a place. The light is seemingly half lit. You have no candles, flashlights, visitors with torches or anything to change the landscape into something more known and familiar. You bump into things with eyes dimly lit and focus weak and never truly adjusting. This is the life of being between worlds. No angels of light have come for you to whisk you away to a greater place and the landscape around you, with all its unknowns, unfamiliarities and hiddenness, never warms enough to give you that comforting sense, the peace of mind and satisfaction with knowing the lay of the land you knew before. Instead, you must live, every moment of every day, in the shadows, accepting if you are to find any peace at all, this place may not be one of belonging and you will never feel at home. For we are light and life and darkness is not a place for us, not a place for me. Lord, help me know what to do with this so called need to belong where I am. In this place you have me, I do not see the compromise or the mixture of temporary solutions I can fit for myself to rename my so-called life as one which has a sense of purpose and place. Indeed, perhaps it is you who makes me feel I do not belong, and, rightfully so. With that, Lord, I need your help.
The main medication I use for pain management is something called dilaudid. As I learned recently, it's basically opium. Now, I am not a fan of the opiods because I think, with me, addiction could be a real, potential issue. I was reminded of this the other day. I had been scheduled to get (and been getting delayed from) a transfusion. Monday was labs, and, it was late Wednesday afternoon before all the confusion (or incompentence on one person's part) had been resolved. As I got ready to leave and drive down--it takes about 30 minutes in decent traffic to get to what we call big Baylor downtown from the house--I felt okay. Within 5 minutes of leaving the house one of these fits I had been having where I literally get so tired I canno keep my eyes open kicked in. After stopping to get something to eat I debated on whether to tempt fate and drive in spite of my condition. Thankfully, what two firing brain cells I had still working fired and I called Kerri to see if she could drive me down.
After picking me up we left. I threw up in the car, which I never do, unless I'm sick (very, very rare) or on chemo (which I have been off of for almost 11 months now). Either way, something else was going on. When we got there I started to feel better, but, in general, I felt horrible, couldn't keep my eyes open, was literally falling asleep at the keyboard. Just, nothing good. I was really worried my disease was progressing A LOT faster than everyone thought. And, then it hit me, the sweats, the bouts of fatigue, the out of it sensation. Ah, the dilaudid. I had been incrementally uping the doses. I was drugging myself to sleep. So, I vowed not to take any more. Voila, the next day, I was an achy dude, but, only got a little tired in the morning...which, with as much drugs as I had been taking, would not have surprised me. I seem to get tiny packets of this stuff stored in fat reserves, and, I'll hit one of these and basically, I'm dosed up again without actually having had taken any medication. Yay, the funs of drugs and daily life.
So, with my main problem identified, I met with a pain management specialist from up here. Time for a little rabbit trail. I consider myself to be a reasonably bright person. Not a genius most of the time but sparkling moments on occasion. And, not an idiot with bouts of stupidity from time to time to make me wonder. But, capable of recognizing smart people. The pain management doctor showed up after much fanfare was made about him. The nurses seem to be like groupies with regards to this guy. They get all excited and call each other to come bask at his presentation. I kind of cracked up watching this dynamic having seen the "brilliance effect" before. Nonetheless, I figured, hey, I can get some help from a good doctor and maybe have a good conversation along the way. I don't get real, deep conversations a lot. Most people either can't or won't engage in them, and, when they come along I cherish those moments.
With that anticipation in mind I went into the conversation with a keen awareness of this one little observation I have made over time: really smart people come in two types: 1) those with whom you can truly interact, and, have real conversations. There is dialogue, interchange of ideas, collaborative thinking, and, imagining. and 2) those for whom you are a part in their reality and they just put on their "show". The show I refer to here is whatever this person is brilliant at. If it is science, you learn science not from interacting with and sharing ideas. You learn from them by just being around them and watching them do their presentation. They don't share. They perform. Now, I recall hearing that 2 years play along side each other not together. They may appear to play together, but, it is not really interaction, but, more just being present in the same space. The whole thing here is that when you meet a smart person, you are either a person or a thing. There rarely seems to be a crossing between these two worlds. And, I have little tolerance for smart people who like to perform. I have more important things to do with my life, especially now, than to watch you do a song and dance.
Well, it took me about 5 minutes to realize this guy had a show to perform. The funny thing was he actually had a part in the show where he stopped and talked about how he was here to learn from me, the patient, and, it was really our show where they were there to learn from him. I had to give it to him. It was a well-done presentation. It even had the trappings of humility, but, it was just a part of the show. At any rate, I tried to actually interact with him and there was no real dialog. I would try to interject, but, the thing is, I had to have the right answer to the question for the show to go on. If I didn't answer correctly, he would answer his own question as needed and move on. Again, I watched the display of human nature in action. It astounds me at times. Honestly, I would rather I were wrong about smart people. I wish they all truly thought of others as others. I just see it all too often. I have to be honest with myself and realize that what I am looking for is a rare combination of traits and I shouldn't expect to see it that often. And, as I said earlier, I am very thankful for those relationships where I can find someone to share ideas with.
The last notable thing has to with my general sense of what's going on. As has been the case for some time now, no one really knows how long I have. In a sense, I am like everyone else in the world. I am dying. But, then, so aren't we all? My challenge is living with disease. Knowing I do not have "unlimited" time and energy I live with the awareness that I am neither blissfully unaware of this mortality that plagues us all nor am I am the cyclops clearly able to see my day of death approaching. It is as if this dark shadow has been released into my life. I look at all things with a slightly dimmed perspective. This morning, while lying in bed, I realized, had I not been sick, I'd probably have been up at 5:30 running some 90-120 minute workout getting ready for a fall racing series. Without thinking much about it I could loosely envision what part of my training season I would be in. How I would have felt from my workout. What sort of times I would have run. How the weather would have felt on my skin. Et cetera. Et cetera. Et cetera. And, in reality, I lied in bed.
Is it this stark contrast of the alternate, imagined reality I live in my head--a world in which I had no cancer and life had continued on its merry way--I have this reality, the one I inhabit. With those opaque orange bottles and white tops. Sweat from drugs. Huge holes in my days and weeks spent talking to people I have no desire to see or know. The inability to play with my kids. The slow letting go of hopes and dreams. The constant restraint I have to exert in life when it comes to my willingness to join things I would enjoy, but, know, in the back of my head, I could never have the energy to truly partake in. This so called life I inhabit is one I do not know how to call home or in which I belong. In my alternate reality, I finally felt a sense of belonging. I had come to peace with who I was, what I did and life in general. Now, I neither belong among the living, for theirs is a limitless world, nor the truly dying, for theirs is but a singularity, focused entirely on an end. No, I am a man of limited means. One who belongs neither here nor there. And, in this place, I know not who I am or how to belong.
What is it in us that seeks belonging? Why do we need to feel at home? I know Jesus tells us we live in the world but are not of it. This, however, speaks to a different point than the one I struggle with at the moment. I see life very confused and am lost in my response to life. I have vowed to not let death or dying stop me from living. In the process of discovering what the means, however, I keep coming to dilemmas, paradoxes, crossroads, and, questions. Some of these are unanswerable. Some can only be answered by God, either on this side of the dissolution of being and others on that side when we are with Him in fullness. Either way, the regularly scheduled visits of uncertainty, confusion, and, puzzlement is not like one from normal life, perhaps something you may encounter in intellectual puzzle or everyday life. These carry with them a different weight and swagger. It is this weird authority, this weird stance such questions take I do not know how to contend with yet. In seeking answers, that is, resolution, familiarity, and, the secret handshakes of understanding that come with having warred in an amicable way, there is an end to be met. In my world, ends seems unfinable and that, I believe, is the root of my unbelonging. When in a strangeland no one tells you the rules and you must invent your own, how would you define belonging? Or, would you even try?
There is that temptation to push back to the world of the known, the familiar. In being bound by disease, that never goes far. And, a darker temptation, one I am not drawn to, to go down the darker roads, the ones that end with no more life, sits at the other edge of the crossroads. So, you grow weary standing in a place. The light is seemingly half lit. You have no candles, flashlights, visitors with torches or anything to change the landscape into something more known and familiar. You bump into things with eyes dimly lit and focus weak and never truly adjusting. This is the life of being between worlds. No angels of light have come for you to whisk you away to a greater place and the landscape around you, with all its unknowns, unfamiliarities and hiddenness, never warms enough to give you that comforting sense, the peace of mind and satisfaction with knowing the lay of the land you knew before. Instead, you must live, every moment of every day, in the shadows, accepting if you are to find any peace at all, this place may not be one of belonging and you will never feel at home. For we are light and life and darkness is not a place for us, not a place for me. Lord, help me know what to do with this so called need to belong where I am. In this place you have me, I do not see the compromise or the mixture of temporary solutions I can fit for myself to rename my so-called life as one which has a sense of purpose and place. Indeed, perhaps it is you who makes me feel I do not belong, and, rightfully so. With that, Lord, I need your help.
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