What is a ruin? Or when is something 'ruined'? And why do some cultures embrace and learn from them while others hide, tear them down, and replace them as quickly as possible? Architectural ruins come first to mind. Ruins -- "a human construction abandoned to nature." It reverts back to wilderness, and we find that alluring-- the unknown, the unexpected, the promise of hidden things, someplace 'lost' and filled with elements that will lead us to better understanding.
Many believe that our lives are best lived when they are in ruins. The good times take us nowhere, make us complacent. The 'bad' times ruin our happy lives and take us on dark journeys where we often discover our strengths and weaknesses and new lives.
The treatment of cancer appears to be the effort to leave one's body in ruins -- kill the cancer cells, but also the healthy cells as well. Strip away all hiding places for the tumors and disease, leaving immune systems in tatters and lives teetering on the brink of complete and utter -- ruin. Death and ruin seem to skip along hand in hand, but there is that moment when one lets go of death and returns to life if it is properly timed and all works together as hoped. At this time the ruins are transformed. Not rebuilt as they were before, but made into something different, drawing on the lessons learned, the revelations discovered, and the fears faced. A new landscape opens up in our bodies, minds, emotions, relationships, and life's path. We have taken a turn, traveled through the shadow of disease and death, and find that we are actually better for it.
Not that I advocate getting sick, just that facing the 'ruins' of one's life may be a gateway into an even more fulfilling life and better understanding of self.
I'm only beginning to examine this way of thinking. I was raised to seek happiness, have a happy life, face troubles with strength and get through them -- but not necessarily learn from them.... I'm learning. And one thing I know with certainty -- there's no 'extra time' for one to adjust. Time has a meter that it beats out without pause and we must keep up.
The book: A Field Guide to Getting Lost by Rebecca Solnit gives me much to consider as I move through an alien landscape of death, loss, disease and rebirth....
Along this journey I learn a few details that might be of use to others along this path. 1. Speak up and make sure you are heard. 2. Follow your gut -- which is much different than giving in to your fears. 3. The healthcare community may think they know cancer -- but it is a surety that they don't know you as well as you know yourself. Make known your needs, wants and dislikes. 4. It is your path and no one else's -- take what works for you and leave the rest.
Oh and drink plenty of water, exercise when you can, avoid constipation and sick people. And find someone you really REALLY trust to walk with down this path.
Friday, March 13, 2015
Sunday, March 8, 2015
Inequality of Disease
Who would ever think it makes sense to feel 'lucky' to have cancer.
And yet, as diseases go, what other disease do you know that has more fundraisers, more marketing, more research, more medical hours devoted to the treatment and cure. Not to mention the amount of wealth garnered from this disease. How many businesses are devoted to cancer? How many college courses or majors or specialties? Oncology just sparkles with $$$$$.
But that sounds crass when one receives the diagnosis and then all of that excess or should I say devotion to this disease becomes relevant and much appreciated. I am one of those who ignored the symptoms and am now facing the diagnosis and treatment for endometrial cancer. I mention this diagnosis and suddenly I'm surrounded by a sisterhood of cancer survivors and those who are battling the disease. Win or lose, the cancer conglomerate coffers seem to overflow.
Cancer was off of my radar. You see for the past ten years my focus was on another disease and the man I married 40-some years ago. He was diagnosed in 2005 with Amyotrophic Lateral Sclerosis (ALS) -- it even has a nickname 'Lou Gehrig's Disease.' The disease has been haunting his family for much longer. His family has lost more than a dozen aunts, uncles, cousins, sisters, brothers, mothers, fathers... My sons lost their father in November, 2014, and my sons have a 50-50 chance of inheriting this disease. The next generation -- will it be fodder for this disease? Our kids? Our grandkids? Our great grands?
The comparison between the care of ALS sufferers and cancer victims is like comparing back alleys to Wall Street. No treatment, no cure. The diagnosis for ALS is a death sentence. Doctors hesitate to give the diagnosis. And yet the longer they delay the more catch up or the more wasted life. For someone with ALS, the only treatment is to maintain quality of life in whatever ways possible. Where there are no medicines or ways to slow the progression of the disease, doctors, technicians, medical suppliers find durable goods to take the place of the wasted muscles, the dead neurons.
But often the disease races through the body faster than insurance companies and medical suppliers and specialists and the VA or any other funding source can react. By the time the funds or the equipment is available to the ALS patient, the disease has surpassed it and once again the family must play catch up to meet the needs of daily living.
Anything from $10 spoons that grasp the hands that have lost their grip to $30,000 power chairs that are made to grow with needs -- elevating seats when the strength to stand weakens, braces and straps and padding to hold limbs and body in place when muscles are gone. Head rest that will keep the head from lolling or falling in such a way as to damage the neck. Neck support when it is too weak to hold the head's weight. Places included in the design on the chair to insert poles and racks to hold the breathing equipment when the disease weakens the intercostal muscles which include the diaphragm which controls breathing. Equipment that acts as his voice will hang on one of those racks with another electronic, battery powered machine that will suck mucous and saliva when he can no longer swallow.
The body continues to worsen and weaken, there is no stabilization. And when the power chair becomes necessary, one must transport it. A van becomes a necessity and no insurance company considers that a health expense. That's another $30,000 or more -- out of pocket, not to mention the additional $30,000 to trick out the van with lift and special adaptive equipment. And at night -- a hospital bed and a lift of some kind to move from bed to chair. Cha-ching. An overhead tract system is another $30,000 or a Hoyer lift that is much less expensive and more work for caregivers. One wife has the interesting dilemma of trying to maneuver her six foot-eight inch 300 pound husband while he dangles from a sling from a Hoyer lift. And if he falls -- how does she get him up. She like me, has realized how many burly firemen can fit in bedroom or bathroom.
Eventually a machine, if nothing else has caused death to this point, takes over the breathing and he is hooked up 24/7 to a machine connected to a hole in his throat. Something I hadn't thought about when considering a tracheotomy for my husband -- no air would pass through his mouth. Dry petri dish. And then the throat muscles lose the ability to swallow and a peg or feeding tube is inserted into the stomach and hanging outside of the body with a plug in it. Food becomes tasteless liquid protein-vitamin mixtures. The mouth has become obsolete, even speech has ended.
Thousands and thousands of dollars and not a single dollar has gone toward treatment or cure of the disease. ALS freely runs rampant through the body, killing at will. Killing muscles and cells and lives. It targets the most healthy all around the world. Men and women, every age. Even kids. Derrol's brother was ten when he was diagnosed -- misdiagnosed -- but it didn't matter, they just treat the symptoms until they morph into something worse. That was in the 1970s -- very little has changed in treatment since he died at age 18....
While I helped my husband maintain his profession, his dignity, his life, I put mine on hold. Nothing was more important than holding onto him --this man. I loved and respected and adored him for 40 plus years. We laughed, we cried, we joked, we quoted movies, we finished each other's sentences and we filled in the blanks in our memories and our thoughts. We were one and then the disease took him. We never got a chance to fight the disease -- really fight it. During the disease's rampage through my husband's body, we fought just about everyone else. Hospital and emergency protocols were killers for him. Most health personnel don't know the first thing about treating ALS unless the person is there to die -- they assume death is the outcome and set protocols to ease them into death. We fought 'assisted suicide by protocol' for twelve days during one hospital stay before we finally convinced the doctors that we meant to live.
But now that I have a cancer diagnosis, in less than a month I've had extensive surgery to remove the tumor and anything that even looks like reproductive organs, I've had several appointments with doctors, several lab tests, several prescriptions, and a schedule for chemo which will start in a few days. Although the only thing the doctor guarantees is that I will lose my hair, he seems quite sure with surgery, poisoning my entire system, and radiating me until I nearly glow, I will be cancer free. My insurance provider is almost giddy about covering this 'catastrophic' illness -- 'that's what they are there for.'
It is comforting to know I am so well cared for by such experts and their staffs and the entire cancer industry. And yet, it is bittersweet -- why couldn't some of this help been available to my husband. Why not at least one weapon, one tool, to fight ALS? Why must there be such an inequality in the disease fighting industry? Diabetes -- nothing has happened toward a cure in 30 or more years. We hear about new ways to 'manage' it, but no cure. NO CURE!
Cynics say there is no money in finding cures. Do we really live in a world where it is better to keep disease alive and growing so the economy stays strong. I pray that isn't true. And yet, in the first quarter of this year expenses to treat this cancer exceeded what we and insurance expended on ALS -- not because we couldn't or wouldn't -- but there were no treatments or cures to invest in. Bittersweet this diagnosis of mine. In three months I have received better care, more care, more options than my husband had in his entire life.
It doesn't seem fair....
And yet, as diseases go, what other disease do you know that has more fundraisers, more marketing, more research, more medical hours devoted to the treatment and cure. Not to mention the amount of wealth garnered from this disease. How many businesses are devoted to cancer? How many college courses or majors or specialties? Oncology just sparkles with $$$$$.
But that sounds crass when one receives the diagnosis and then all of that excess or should I say devotion to this disease becomes relevant and much appreciated. I am one of those who ignored the symptoms and am now facing the diagnosis and treatment for endometrial cancer. I mention this diagnosis and suddenly I'm surrounded by a sisterhood of cancer survivors and those who are battling the disease. Win or lose, the cancer conglomerate coffers seem to overflow.
Cancer was off of my radar. You see for the past ten years my focus was on another disease and the man I married 40-some years ago. He was diagnosed in 2005 with Amyotrophic Lateral Sclerosis (ALS) -- it even has a nickname 'Lou Gehrig's Disease.' The disease has been haunting his family for much longer. His family has lost more than a dozen aunts, uncles, cousins, sisters, brothers, mothers, fathers... My sons lost their father in November, 2014, and my sons have a 50-50 chance of inheriting this disease. The next generation -- will it be fodder for this disease? Our kids? Our grandkids? Our great grands?
The comparison between the care of ALS sufferers and cancer victims is like comparing back alleys to Wall Street. No treatment, no cure. The diagnosis for ALS is a death sentence. Doctors hesitate to give the diagnosis. And yet the longer they delay the more catch up or the more wasted life. For someone with ALS, the only treatment is to maintain quality of life in whatever ways possible. Where there are no medicines or ways to slow the progression of the disease, doctors, technicians, medical suppliers find durable goods to take the place of the wasted muscles, the dead neurons.
But often the disease races through the body faster than insurance companies and medical suppliers and specialists and the VA or any other funding source can react. By the time the funds or the equipment is available to the ALS patient, the disease has surpassed it and once again the family must play catch up to meet the needs of daily living.
Anything from $10 spoons that grasp the hands that have lost their grip to $30,000 power chairs that are made to grow with needs -- elevating seats when the strength to stand weakens, braces and straps and padding to hold limbs and body in place when muscles are gone. Head rest that will keep the head from lolling or falling in such a way as to damage the neck. Neck support when it is too weak to hold the head's weight. Places included in the design on the chair to insert poles and racks to hold the breathing equipment when the disease weakens the intercostal muscles which include the diaphragm which controls breathing. Equipment that acts as his voice will hang on one of those racks with another electronic, battery powered machine that will suck mucous and saliva when he can no longer swallow.
The body continues to worsen and weaken, there is no stabilization. And when the power chair becomes necessary, one must transport it. A van becomes a necessity and no insurance company considers that a health expense. That's another $30,000 or more -- out of pocket, not to mention the additional $30,000 to trick out the van with lift and special adaptive equipment. And at night -- a hospital bed and a lift of some kind to move from bed to chair. Cha-ching. An overhead tract system is another $30,000 or a Hoyer lift that is much less expensive and more work for caregivers. One wife has the interesting dilemma of trying to maneuver her six foot-eight inch 300 pound husband while he dangles from a sling from a Hoyer lift. And if he falls -- how does she get him up. She like me, has realized how many burly firemen can fit in bedroom or bathroom.
Eventually a machine, if nothing else has caused death to this point, takes over the breathing and he is hooked up 24/7 to a machine connected to a hole in his throat. Something I hadn't thought about when considering a tracheotomy for my husband -- no air would pass through his mouth. Dry petri dish. And then the throat muscles lose the ability to swallow and a peg or feeding tube is inserted into the stomach and hanging outside of the body with a plug in it. Food becomes tasteless liquid protein-vitamin mixtures. The mouth has become obsolete, even speech has ended.
Thousands and thousands of dollars and not a single dollar has gone toward treatment or cure of the disease. ALS freely runs rampant through the body, killing at will. Killing muscles and cells and lives. It targets the most healthy all around the world. Men and women, every age. Even kids. Derrol's brother was ten when he was diagnosed -- misdiagnosed -- but it didn't matter, they just treat the symptoms until they morph into something worse. That was in the 1970s -- very little has changed in treatment since he died at age 18....
While I helped my husband maintain his profession, his dignity, his life, I put mine on hold. Nothing was more important than holding onto him --this man. I loved and respected and adored him for 40 plus years. We laughed, we cried, we joked, we quoted movies, we finished each other's sentences and we filled in the blanks in our memories and our thoughts. We were one and then the disease took him. We never got a chance to fight the disease -- really fight it. During the disease's rampage through my husband's body, we fought just about everyone else. Hospital and emergency protocols were killers for him. Most health personnel don't know the first thing about treating ALS unless the person is there to die -- they assume death is the outcome and set protocols to ease them into death. We fought 'assisted suicide by protocol' for twelve days during one hospital stay before we finally convinced the doctors that we meant to live.
But now that I have a cancer diagnosis, in less than a month I've had extensive surgery to remove the tumor and anything that even looks like reproductive organs, I've had several appointments with doctors, several lab tests, several prescriptions, and a schedule for chemo which will start in a few days. Although the only thing the doctor guarantees is that I will lose my hair, he seems quite sure with surgery, poisoning my entire system, and radiating me until I nearly glow, I will be cancer free. My insurance provider is almost giddy about covering this 'catastrophic' illness -- 'that's what they are there for.'
It is comforting to know I am so well cared for by such experts and their staffs and the entire cancer industry. And yet, it is bittersweet -- why couldn't some of this help been available to my husband. Why not at least one weapon, one tool, to fight ALS? Why must there be such an inequality in the disease fighting industry? Diabetes -- nothing has happened toward a cure in 30 or more years. We hear about new ways to 'manage' it, but no cure. NO CURE!
Cynics say there is no money in finding cures. Do we really live in a world where it is better to keep disease alive and growing so the economy stays strong. I pray that isn't true. And yet, in the first quarter of this year expenses to treat this cancer exceeded what we and insurance expended on ALS -- not because we couldn't or wouldn't -- but there were no treatments or cures to invest in. Bittersweet this diagnosis of mine. In three months I have received better care, more care, more options than my husband had in his entire life.
It doesn't seem fair....
Saturday, February 21, 2015
Searching for Reality
I read somewhere, probably on Facebook, that we are born in a day, die in a day, and we can change in a day. Let me tell you that death --of one's mate, lover, soul, conscience, and best friend for more than four decades -- causes major changes. Changes so huge that the brain cannot fathom it. He is gone. The words mean nothing.
He is dead.
No response.
I watch for his face in crowds. I wait to hear his voice -- always. I listen for the sound of him, breathe in hoping to catch his scent. My brain is sure that he will soon be home from work.... He will fix the window, the faucet, the stove. He will pay the bills and discuss investments with me and do the taxes. I wait.
Nearly three months later, my brain continues to disconnect from 'reality' and question just what is real? I can't truly be living in a world without my Derrol. He cannot have left me. We were two halves of a whole and wherever he went, I went. Wherever I went, he went. How could he leave and not take me with him?
Then the brain begins to question memories. Was he really part of my life? Am I only fantasizing about the years we spent together? The sons are real. A living testament to the man who helped mold them into the young men they are today. And yet, there are gaps in the memory. Most of the experiences are frozen somewhere and I am unable to thaw them enough to bring them to life. They reside in that same 'as told to' realm as baby pictures. I look at my mother holding this baby that is supposed to be me and I accept that it is part of my life, but I have no real connection to it.
This unreality is punctuated by sudden outbursts of sobbing that seem to have been squeezed right out of my soul. Loud, sloppy crying that scares the cat. That scares me by the intensity. I cry until my whole body is heaving, until I curl up around myself and let the seizure take me. I cry until my hands are dry and I'm dehydrated.... I don't know why I am crying. Nothing in particular started it. Perhaps a tone of voice, a bit of sympathy might lead me down that path. At first I couldn't listen to oldies music -- the Beatles, Queen, all of the songs of our years of love and companionship and friendship. Sunday -- the day he died -- is hopeless. The usual rituals are to be avoided. I wander around from room to room, searching for him. The cat watches.
Often the cat abruptly raises his head, ears alert. He stares into nothingness. Stares at the place where my Derrol was last alive. And I look, but see nothing. Hope stays alive and I speak his name. "I miss you," I add. "Please come back...." And then I feel guilty because he has moved from pain, disease, suffering and despair to a better place. My Protestant training says he is in a better place. I don't believe 'he' resides in that box of ashes on the book shelf.
Those warriors who have gone before me through this valley of death tell me that grief is like waves of the ocean, like a roller coaster, unpredictable and surprising, always striking when you least expect it. Washing over me and then leaving me adrift in a tidal pool of tears and aloneness. It is easier when I am alone. I can just let it run its course. I can let the grief toss and beat me up and then go away. There is no need to be strong, deny it, put on a happy face, feel compassion for others, worry about their feelings. I can just deal with the grief one-on-one. Some days I come out the victor, feeling strong and able to put it in its place. Weekends are the worst and usually grief rolls over me like a steam roller. Weekends were our together time. Or I seem to remember it that way.
Essays I have written about him, about us, help me to remember that there was an us. A Derrol. My written words seem to create a memory that seems familiar. I can hear him as he reads it saying, "Is that part what you call literary license?" And my response, a bit defensive, saying, "That's how I remember it...."
Are those memories simply me concocting happier times?
I fear the day when my brain reconciles with reality. When it hits me that he is truly gone. It hits me like a slap on the face when I see my status listed as 'widow.' I wear the gold ring. I am married. I repeat that mantra in an effort to believe it. I do believe it, I just don't feel it.
Married until death do you part. No, it doesn't work that way. Married until all of your senses, your heart, your brain, your being comes to terms with this crack in the universe, this shift that has left you on one side and him on another of a divide that can't be traversed.
Until that time when reality rights itself, I live in a fog, a half-life. I keep living until I am actually alive again. Perhaps this is the essence of purgatory -- that tweener stage between life and death, between heaven and hell.
I continue to breathe. Forget to eat and then eat as if I am famished. Feed the cat. Brew the coffee. Wash the laundry, dishes, floors.... A robot going through the motions. My computer brain runs the show, the human brain is frozen in 'search mode.'
I cling to living until I am alive again. And, silly as it sounds, even to me, I cling to the hope that he hasn't gone, that he's only around the next corner and if I walk a little faster, I will catch up to him, feel his strong arms around me, his whiskery face rubbing my cheek, his lips on mine. His scent filling my nostrils and his love enveloping me.... I wait for that day. It only takes a day, a moment. I was born in a day, married in a day, fell in love in a day, gave birth in a day, and yet each day I do so miss that man of mine.
The tears are gathering. I must stop and wait them out.... They seem to wash away some of the pain and allow me to go on a bit longer, a bit stronger.
He is dead.
No response.
I watch for his face in crowds. I wait to hear his voice -- always. I listen for the sound of him, breathe in hoping to catch his scent. My brain is sure that he will soon be home from work.... He will fix the window, the faucet, the stove. He will pay the bills and discuss investments with me and do the taxes. I wait.
Nearly three months later, my brain continues to disconnect from 'reality' and question just what is real? I can't truly be living in a world without my Derrol. He cannot have left me. We were two halves of a whole and wherever he went, I went. Wherever I went, he went. How could he leave and not take me with him?
Then the brain begins to question memories. Was he really part of my life? Am I only fantasizing about the years we spent together? The sons are real. A living testament to the man who helped mold them into the young men they are today. And yet, there are gaps in the memory. Most of the experiences are frozen somewhere and I am unable to thaw them enough to bring them to life. They reside in that same 'as told to' realm as baby pictures. I look at my mother holding this baby that is supposed to be me and I accept that it is part of my life, but I have no real connection to it.
This unreality is punctuated by sudden outbursts of sobbing that seem to have been squeezed right out of my soul. Loud, sloppy crying that scares the cat. That scares me by the intensity. I cry until my whole body is heaving, until I curl up around myself and let the seizure take me. I cry until my hands are dry and I'm dehydrated.... I don't know why I am crying. Nothing in particular started it. Perhaps a tone of voice, a bit of sympathy might lead me down that path. At first I couldn't listen to oldies music -- the Beatles, Queen, all of the songs of our years of love and companionship and friendship. Sunday -- the day he died -- is hopeless. The usual rituals are to be avoided. I wander around from room to room, searching for him. The cat watches.
Often the cat abruptly raises his head, ears alert. He stares into nothingness. Stares at the place where my Derrol was last alive. And I look, but see nothing. Hope stays alive and I speak his name. "I miss you," I add. "Please come back...." And then I feel guilty because he has moved from pain, disease, suffering and despair to a better place. My Protestant training says he is in a better place. I don't believe 'he' resides in that box of ashes on the book shelf.
Those warriors who have gone before me through this valley of death tell me that grief is like waves of the ocean, like a roller coaster, unpredictable and surprising, always striking when you least expect it. Washing over me and then leaving me adrift in a tidal pool of tears and aloneness. It is easier when I am alone. I can just let it run its course. I can let the grief toss and beat me up and then go away. There is no need to be strong, deny it, put on a happy face, feel compassion for others, worry about their feelings. I can just deal with the grief one-on-one. Some days I come out the victor, feeling strong and able to put it in its place. Weekends are the worst and usually grief rolls over me like a steam roller. Weekends were our together time. Or I seem to remember it that way.
Essays I have written about him, about us, help me to remember that there was an us. A Derrol. My written words seem to create a memory that seems familiar. I can hear him as he reads it saying, "Is that part what you call literary license?" And my response, a bit defensive, saying, "That's how I remember it...."
Are those memories simply me concocting happier times?
I fear the day when my brain reconciles with reality. When it hits me that he is truly gone. It hits me like a slap on the face when I see my status listed as 'widow.' I wear the gold ring. I am married. I repeat that mantra in an effort to believe it. I do believe it, I just don't feel it.
Married until death do you part. No, it doesn't work that way. Married until all of your senses, your heart, your brain, your being comes to terms with this crack in the universe, this shift that has left you on one side and him on another of a divide that can't be traversed.
Until that time when reality rights itself, I live in a fog, a half-life. I keep living until I am actually alive again. Perhaps this is the essence of purgatory -- that tweener stage between life and death, between heaven and hell.
I continue to breathe. Forget to eat and then eat as if I am famished. Feed the cat. Brew the coffee. Wash the laundry, dishes, floors.... A robot going through the motions. My computer brain runs the show, the human brain is frozen in 'search mode.'
I cling to living until I am alive again. And, silly as it sounds, even to me, I cling to the hope that he hasn't gone, that he's only around the next corner and if I walk a little faster, I will catch up to him, feel his strong arms around me, his whiskery face rubbing my cheek, his lips on mine. His scent filling my nostrils and his love enveloping me.... I wait for that day. It only takes a day, a moment. I was born in a day, married in a day, fell in love in a day, gave birth in a day, and yet each day I do so miss that man of mine.
The tears are gathering. I must stop and wait them out.... They seem to wash away some of the pain and allow me to go on a bit longer, a bit stronger.
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