Richard M. Cohen – Journeyman - Part 2
To Cope	By Richard M. Cohen on December 8, 2015 in JOURNEYMAN I have noted that the individuals who have said over the years that I cope with my various ailments very well are those who know me the least. How the hell do they know? These silly statements are goofy because the face the public sees never belongs to the one I see when I shave in the morning. I do not know what they are talking about. Nor do they.
According to the Free Dictionary (whatever that is), to cope means, “To contend with difficulties and act to overcome them.” Overcome? I don’t think so. Dictionary.com says it means to struggle or deal…with some degree of success. Really? And what does that mean?
How does any one of us grade himself or herself on the ability to cope? Hell. We need a standard set of criteria to figure that out. So what is the gold standard of coping? There is none, of course, and this seems like a waste of time. Maybe we need to determine how well we are doing for ourselves and leave it at that. As always, we need to stop listening to others and communicate with ourselves. Probably there is more all of us can do to cope. Only self-awareness will help us with that.
My definition of successful coping is to live as close to normally as is both possible and acceptable. I get to decide what works for me. You can do the same. I don’t know about you, but I am tuning people out. Why I listen in the first place is a mystery.
Richard on Twitter rmcjourneyman
‘Til Disability do We Part	By Richard M. Cohen on November 22, 2015 in JOURNEYMAN Pam writes, “My husband told me last night that he feels like he has lost his wife. And since I am the one married to him, of course, I was devastated.“ I recognized this is only the latest version of an old, sad story.
“He no longer sees the me he fell in love with and married 15 years ago. Nope, he views me more as a roommate/friend and himself as a caregiver. I used to feel cherished by him; now I am just another obligation, like feeding the cat or cleaning the garage.”
I have heard this refrain too many times. It is a pathetic paradigm and hardly unusual. Husband feels put upon by wife’s disabling disease. It never seems to work the other way around. I have no business getting into other peoples’ business, but it hardly makes me proud to be of the male persuasion.
‘Til disability do we part? Isn’t that how it goes? I hear these kinds of stories about couples living in close quarters with MS. I am sure it apples to serious sickness of all kinds. I am neither a moralist nor a perfect person. I do know what dependence feels like. I relate to the discomfort of relying on others.
And I do know and acknowledge what my wife does for me every day, not out of obligation, I hope, but because she wants to. All of us are different. I, for one, try not to complain or criticize when things are done her way, not mine. I may have a tough life, but in many ways, hers is tougher because she is stuck with duel realities, living with the problems of two. And there are no complaints aimed at me.
We are privileged without question. I never lose sight of that. Maybe this is as simple as the stereotype of Baby Boomers at their self-absorbed worst. I don’t know. I do think that those of us who need the help of others have to be careful not to take others for granted or treat our partners as employees. Responsibility cuts both ways.
Patience	By Richard M. Cohen on November 8, 2015 in JOURNEYMAN A well-meaning, little knowing acquaintance recently advised me to be patient. Really? Patient? I had noted that a particular treatment I find particularly unpleasant does not seem to be doing anything for me. Give it some time, the guy suggested. Be patient. Another chronically healthy being was weighing in on something he knew nothing about.
Book	By Richard M. Cohen on November 5, 2015 in JOURNEYMAN After more than a little time, Blue Rider Press, an imprint of Penguin Random House, picked up the option for my new book, Chasing Hope. Beware of what you ask for. Now I have to write it. That promises to be pure pain. The question here is, what will that mean for Journey Man? Probably nothing.
Waiting for the Ax	By Richard M. Cohen on October 31, 2015 in JOURNEYMAN An upbeat attitude is a reliable defense mechanism, even fuel for denial, as we try to charge through all in our way. In a way, that is what this blog was to be all about. Make sense? Some of our medical problems have been crises, others, flies to be brushed off shoulders. Having passed the magic number, sixty-five and peering into an unkind mirror, I spend more time than is comfortable wondering if there is an endgame out there. By endgame, I mean, the last level of a game, a strategic climax with a loudly ticking clock.
Christopher	By Richard M. Cohen on October 25, 2015 in JOURNEYMAN I believe we can agree that Christopher is one of our stalwarts, with clear thinking and a helpful perspective. It is jarring and quite disturbing to hear his cry now. Fifty-four days out of work with serious relapses and now in a nursing facility. And that unanswerable plea to anyone who will listen, “Where does anyone turn to at times like this for answers?”
Plasma Exchange	By Richard M. Cohen on October 21, 2015 in JOURNEYMAN As if stem cell infusions were not exotic enough, my neurologist told me months ago he wanted me to give Plasmapheresis, or plasma exchange, a try. I resisted as long as I could, just for the sport of it. This is not a new therapy, and I was told there is some evidence it is effective with secondary progressive MS. I have trouble saying no to this guy, so I figured, what the heck, though that is not precise, word for word.
A Learning Curve	By Richard M. Cohen on October 10, 2015 in JOURNEYMAN I just framed multiple sclerosis with a label that should seem self-evident, if not obvious. I wrote that MS is a marathon, not a sprint. Duh. But I am sitting here thinking about my flare-ups through the years. My first bout of optic neuritis, when I lost all vision in one eye, came almost exactly 42 years ago. Losing vision has been a defining dimension of the disease for me.
Much has followed. You know the drill. The passage of time is stunning and what many of us have endured, quite sobering. This is worth thinking about, not in terms of earning martyr merit badges but to understand what we have learned about the need for resilience and patience. My skills for the former are more polished than my history of projecting patience.
It should not be seen as self-serving to say we have become strong, even if we did not start out that way. Many people living with a multitude of threatening illnesses must realize all of us are much stronger than we imagined we could be. I think sometimes we surprise ourselves. Not much about my health scares me anymore. Been there, done that.
The downside of enduring so much is how much it has to sadden anybody. So many have lost so much, and there is no way to gloss over that reality. I am fully aware of how important my family is, not for the practical everyday assistance they offer but for the comfort of the unqualified love they offer.
I am lucky. I cannot speak for anyone else. So far, I am OK, though I frequently wake up wondering if today will be the day. Flares seem to come in the night. We have been condemned to a life of uncertainty, knowing that progressive diseases progress, and there is more to come. So what have we learned?
I have elevated my tolerance for living with ambiguity. I have learned what is most important to me. I do not to sweat the small stuff. And on and on. I am reminded of a wonderful quote from Aeschylus. “He who learns must suffer. And even in our sleep pain that cannot forget falls drop by drop upon the heart, and in our own despair, against our will, comes wisdom to us by the awful grace of God.”
Get Used to It	By Richard M. Cohen on September 29, 2015 in JOURNEYMAN I wrote on Twitter this morning that I am sick and tired of feeling sick and tired. I meant it. The assault by illness on the body is cumulative. Aches and pains add up. Neuro dysfunction places stress on the body in predictable fashion. Lower back weakness brings on pain. Leg weakness strains joints. I don’t know. I made these up. This is not my choice of how to play doctor. I am not going to list my complaints. That would violate self-imposed rules.
Peering Around the Bend	By Richard M. Cohen on September 22, 2015 in JOURNEYMAN I spend time trying to peer into the future, probably too many wasted moments. Is the past prologue? I wonder. I have traveled that road and know the answer. There are no predictors. My path has not been easy, though I do know it could have been worse. Much worse. I have written that I will live peacefully with my life as it is in this moment. Just do not make it worse, whoever you are.
What would you pay to know outcomes, to know, digest and cope? Sometimes I lose confidence in my ability to adjust to possible worst-case scenarios. I cannot drive them from my head. I want to know and want no part of it. I demand truth from my doctors. Suppose they knew. They don’t, of course, but that day will come. Would you want the truth?
Some illnesses have certain destinations. Not mine. I could land in a living heaven or hell. My father finished his race in a wheelchair. My experience thus far has been more brutal than his. I write too often about the wheelchair and white cane parked in the corner of my mind. You can tear up photos but not images projected in your mind in the dead of night.
I consider myself well adjusted. I wonder if that is true.
Next → RECENT POSTS	Multitasking
Richard M. Cohen – Journeyman - Part 2
To Cope	By Richard M. Cohen on December 8, 2015 in JOURNEYMAN I have noted that the individuals who have said over the years that I cope with my various ailments very well are those who know me the least. How the hell do they know? These silly statements are goofy because the face the public sees never belongs to the one I see when I shave in the morning. I do not know what they are talking about. Nor do they.
According to the Free Dictionary (whatever that is), to cope means, “To contend with difficulties and act to overcome them.” Overcome? I don’t think so. Dictionary.com says it means to struggle or deal…with some degree of success. Really? And what does that mean?
How does any one of us grade himself or herself on the ability to cope? Hell. We need a standard set of criteria to figure that out. So what is the gold standard of coping? There is none, of course, and this seems like a waste of time. Maybe we need to determine how well we are doing for ourselves and leave it at that. As always, we need to stop listening to others and communicate with ourselves. Probably there is more all of us can do to cope. Only self-awareness will help us with that.
My definition of successful coping is to live as close to normally as is both possible and acceptable. I get to decide what works for me. You can do the same. I don’t know about you, but I am tuning people out. Why I listen in the first place is a mystery.
Richard on Twitter rmcjourneyman
‘Til Disability do We Part	By Richard M. Cohen on November 22, 2015 in JOURNEYMAN Pam writes, “My husband told me last night that he feels like he has lost his wife. And since I am the one married to him, of course, I was devastated.“ I recognized this is only the latest version of an old, sad story.
“He no longer sees the me he fell in love with and married 15 years ago. Nope, he views me more as a roommate/friend and himself as a caregiver. I used to feel cherished by him; now I am just another obligation, like feeding the cat or cleaning the garage.”
I have heard this refrain too many times. It is a pathetic paradigm and hardly unusual. Husband feels put upon by wife’s disabling disease. It never seems to work the other way around. I have no business getting into other peoples’ business, but it hardly makes me proud to be of the male persuasion.
‘Til disability do we part? Isn’t that how it goes? I hear these kinds of stories about couples living in close quarters with MS. I am sure it apples to serious sickness of all kinds. I am neither a moralist nor a perfect person. I do know what dependence feels like. I relate to the discomfort of relying on others.
And I do know and acknowledge what my wife does for me every day, not out of obligation, I hope, but because she wants to. All of us are different. I, for one, try not to complain or criticize when things are done her way, not mine. I may have a tough life, but in many ways, hers is tougher because she is stuck with duel realities, living with the problems of two. And there are no complaints aimed at me.
We are privileged without question. I never lose sight of that. Maybe this is as simple as the stereotype of Baby Boomers at their self-absorbed worst. I don’t know. I do think that those of us who need the help of others have to be careful not to take others for granted or treat our partners as employees. Responsibility cuts both ways.
Patience	By Richard M. Cohen on November 8, 2015 in JOURNEYMAN A well-meaning, little knowing acquaintance recently advised me to be patient. Really? Patient? I had noted that a particular treatment I find particularly unpleasant does not seem to be doing anything for me. Give it some time, the guy suggested. Be patient. Another chronically healthy being was weighing in on something he knew nothing about.
Book	By Richard M. Cohen on November 5, 2015 in JOURNEYMAN After more than a little time, Blue Rider Press, an imprint of Penguin Random House, picked up the option for my new book, Chasing Hope. Beware of what you ask for. Now I have to write it. That promises to be pure pain. The question here is, what will that mean for Journey Man? Probably nothing.
Waiting for the Ax	By Richard M. Cohen on October 31, 2015 in JOURNEYMAN An upbeat attitude is a reliable defense mechanism, even fuel for denial, as we try to charge through all in our way. In a way, that is what this blog was to be all about. Make sense? Some of our medical problems have been crises, others, flies to be brushed off shoulders. Having passed the magic number, sixty-five and peering into an unkind mirror, I spend more time than is comfortable wondering if there is an endgame out there. By endgame, I mean, the last level of a game, a strategic climax with a loudly ticking clock.
Christopher	By Richard M. Cohen on October 25, 20
15 in JOURNEYMAN I believe we can agree that Christopher is one of our stalwarts, with clear thinking and a helpful perspective. It is jarring and quite disturbing to hear his cry now. Fifty-four days out of work with serious relapses and now in a nursing facility. And that unanswerable plea to anyone who will listen, “Where does anyone turn to at times like this for answers?”
Plasma Exchange	By Richard M. Cohen on October 21, 2015 in JOURNEYMAN As if stem cell infusions were not exotic enough, my neurologist told me months ago he wanted me to give Plasmapheresis, or plasma exchange, a try. I resisted as long as I could, just for the sport of it. This is not a new therapy, and I was told there is some evidence it is effective with secondary progressive MS. I have trouble saying no to this guy, so I figured, what the heck, though that is not precise, word for word.
A Learning Curve	By Richard M. Cohen on October 10, 2015 in JOURNEYMAN I just framed multiple sclerosis with a label that should seem self-evident, if not obvious. I wrote that MS is a marathon, not a sprint. Duh. But I am sitting here thinking about my flare-ups through the years. My first bout of optic neuritis, when I lost all vision in one eye, came almost exactly 42 years ago. Losing vision has been a defining dimension of the disease for me.
Much has followed. You know the drill. The passage of time is stunning and what many of us have endured, quite sobering. This is worth thinking about, not in terms of earning martyr merit badges but to understand what we have learned about the need for resilience and patience. My skills for the former are more polished than my history of projecting patience.
It should not be seen as self-serving to say we have become strong, even if we did not start out that way. Many people living with a multitude of threatening illnesses must realize all of us are much stronger than we imagined we could be. I think sometimes we surprise ourselves. Not much about my health scares me anymore. Been there, done that.
The downside of enduring so much is how much it has to sadden anybody. So many have lost so much, and there is no way to gloss over that reality. I am fully aware of how important my family is, not for the practical everyday assistance they offer but for the comfort of the unqualified love they offer.
I am lucky. I cannot speak for anyone else. So far, I am OK, though I frequently wake up wondering if today will be the day. Flares seem to come in the night. We have been condemned to a life of uncertainty, knowing that progressive diseases progress, and there is more to come. So what have we learned?
I have elevated my tolerance for living with ambiguity. I have learned what is most important to me. I do not to sweat the small stuff. And on and on. I am reminded of a wonderful quote from Aeschylus. “He who learns must suffer. And even in our sleep pain that cannot forget falls drop by drop upon the heart, and in our own despair, against our will, comes wisdom to us by the awful grace of God.”
Get Used to It	By Richard M. Cohen on September 29, 2015 in JOURNEYMAN I wrote on Twitter this morning that I am sick and tired of feeling sick and tired. I meant it. The assault by illness on the body is cumulative. Aches and pains add up. Neuro dysfunction places stress on the body in predictable fashion. Lower back weakness brings on pain. Leg weakness strains joints. I don’t know. I made these up. This is not my choice of how to play doctor. I am not going to list my complaints. That would violate self-imposed rules.
Peering Around the Bend	By Richard M. Cohen on September 22, 2015 in JOURNEYMAN I spend time trying to peer into the future, probably too many wasted moments. Is the past prologue? I wonder. I have traveled that road and know the answer. There are no predictors. My path has not been easy, though I do know it could have been worse. Much worse. I have written that I will live peacefully with my life as it is in this moment. Just do not make it worse, whoever you are.
What would you pay to know outcomes, to know, digest and cope? Sometimes I lose confidence in my ability to adjust to possible worst-case scenarios. I cannot drive them from my head. I want to know and want no part of it. I demand truth from my doctors. Suppose they knew. They don’t, of course, but that day will come. Would you want the truth?
Some illnesses have certain destinations. Not mine. I could land in a living heaven or hell. My father finished his race in a wheelchair. My experience thus far has been more brutal than his. I write too often about the wheelchair and white cane parked in the corner of my mind. You can tear up photos but not images projected in your mind in the dead of night.
I consider myself well adjusted. I wonder if that is true.
Next → RECENT POSTS	Multitasking