An April 2003 Journal Entry
I had one of those rare but stunning moments the other day where I just felt flooded by the utter profundity of this world – at the miracle of actually being alive and part of this infinite web we have yet to fully understand.
Every day I lie in my bed in virtual stillness, yet I am also simultaneously spinning with billions of others on a beautiful, blue-green orb within an endless, incomprehensibly massive universe. And, even more miraculous, I am blessed with the human ability to be fully aware of that fact, and to ponder and be in awe at the meaning of it all.
Sometimes, I look out my window at the beauty of the mountains and trees and all the cacti. Or at the birds fighting for food on the feeder we have provided them. Or the bunny rabbits who visit me from time to time, scurrying about or just sitting there in some kind of quiet reflection I don't fully understand. And I think about how all these things are all distinct forms of being-ness. All these things are alive in various forms of consciousness that each differ from mine. And yet, in so many ways, we are the same. We are all alive and experiencing the world through our endlessly unique roles and abilities, and we all have the same basic, inherent needs and desires -- to be nourished, to thrive, and to simply be as we were created to be.
Other times I just lay with my eyes closed in meditation and try to feel this life inside me, as well as this sickness that has taken so much from me. I let myself go to the middle of it and feel the agony of it to the core. And I wonder at the fact that my internal body actually knows what’s wrong with me, yet “I,” my mind, does not. My body somehow knows what has gone astray, and it is desperately trying to fix it for me or to compensate for it in some way. It is failing, of course, but it is indeed trying. How does it know where to begin, or what to even attempt to do? How does it know and function beyond what I myself can comprehend? Every cell of my body seems to carry its own intelligence, independent of what I define as “me.” How extraordinary is that?
In my questioning, I start to marvel at how incredible the human body is. Do healthy people really consider the miracle of their wellness, when so many things could go wrong and yet rarely ever do? Do they understand it, glorify in it, breathe it in every second of every day? Do they dance with joy at their good fortune? Do they know the tremendous gift that they have been blessed with, and do they appreciate it? I mean, REALLY appreciate it, with all their being?
Sometimes I am just overwhelmed with how amazing life is. How every inch of this universe and every breath we all take is filled with endless miracles and wonder. If only we took note of it all more often. If only I had soaked more of it up when I still had the freedom to dance.
Sunday, September 5, 2010
Sunday, August 15, 2010
Wildlife Window
It goes without saying that not much happens within the confines of my little room each day. Surprisingly, though, if you are watchful enough (which of course I am), there's quite a bit of activity that occurs in the small area just outside my window.
As I previously mentioned in another post, I have recently had a new rabbit living in my courtyard. She made quite a snug little place for herself right under my mesquite tree, and for awhile, she would sit out there for hours every day.
It was interesting to me how she, like me, spent much of her day doing nothing but essentially being still. The main difference (other than that she's healthy and a rabbit, and I'm sick and a human) is that she seemed rather content with everything. As far as I could tell, she was not ruminating about her purpose and the overall meaning of life, nor pondering the why's of what was and what could have been. Instead, she seemed perfectly content in her way of life -- patient, quiet and watchful.
And then I realized there was a bit more to her story. One day, while looking out the window, I suddenly saw that she was not alone, and there was a reason she was hanging out in one spot all day. She was keeping an eye on her two newborns, both of whom had apparently been safe in hiding all this time!
How cute are they? It's hard to see from the poor quality of the photos (taken through a window screen), but there's a lizard with the two bunnies in that last picture. He seemed to take a liking to them, and the three hung out together for several days.
It was fun to watch as the little ones explored their surroundings and became acquainted with each other. One seemed to be rather adventurous, bravely traveling far in his exciting explorations each day, while the other preferred to stay near home and close to his mother.
I haven't seen any of them in a week or two. Perhaps now that the kids are all grown up, everyone may have moved on to bigger and more exciting things. :)
There are quite a few round-tailed squirrels who climb the tree outside my window each day as well, looking for mesquite beans. Here are a couple photos of them perusing the branches for some food.
Living in Arizona, I often see a fair share of creepy, crawly lizards as well. I'm not quite as fond of them as I am of some of the other creatures who roam outside, but they are still interesting to look at from a distance...
And of course, the tree and feeders still attract lots of birds. My favorites are the cardinals and finches. I love how they brighten the desert with their joyful songs and vivid colors. Here is a yellow goldfinch sitting on one of the mesquite tree branches, waiting patiently for his turn at the feeder.
But my most interesting visitor of late was one that actually took me a bit by surprise. I was laying here in bed (that's not the surprising part) listening to an audio-book when I suddenly heard a bit of a thud. I looked up and saw something had perched itself onto the screen of my window. It was hard to make out exactly what it was at first, as it was in a bit of an awkward position:
Contrary to what it looks like, that's not a giant bird hanging upside down from a tree branch. :) He's moving himself around on my window screen.
It wasn't until the bird settled himself and peeked in to look at me that I realized this was not an ordinary bird. It was an elf owl!
Elf owls are named after their small size, often just 6 inches in length. They are the smallest owls in the world. They are also nocturnal, and typically nest in natural tree cavities or abandoned woodpecker holes of saguaro cacti. It is therefore very rare to ever see them in the daytime. In over a decade of living in the Southwest, this was my first glimpse of one. Not that I actually get out much, of course, but still. It was quite a treat.
We stared at each other for awhile, and I'm not sure who found the other more interesting.
After his curiosity was apparently satisfied, he decided to do a little dance of sorts before flying away.
I've also had another bird who seems to like to peek in on me every now and then. For two days straight, he would fly to my window and seem to look inside, chirp at me, then fly away and come back for another look a few seconds later. This actually went on for hours and hours. It was hard to get a photo of him as he moved around so fast, but here is one of the few I snapped as he was checking me out (or, more likely, admiriing his own reflection).
Anyway, so there you have my most recent excitements in my very non-exciting world.
I'm hoping more excitement is soon on its way, this time in the form of a certain paper published in the Proceedings of the National Academy of Sciences. I could use some really good news.
As I previously mentioned in another post, I have recently had a new rabbit living in my courtyard. She made quite a snug little place for herself right under my mesquite tree, and for awhile, she would sit out there for hours every day.
It was interesting to me how she, like me, spent much of her day doing nothing but essentially being still. The main difference (other than that she's healthy and a rabbit, and I'm sick and a human) is that she seemed rather content with everything. As far as I could tell, she was not ruminating about her purpose and the overall meaning of life, nor pondering the why's of what was and what could have been. Instead, she seemed perfectly content in her way of life -- patient, quiet and watchful.
And then I realized there was a bit more to her story. One day, while looking out the window, I suddenly saw that she was not alone, and there was a reason she was hanging out in one spot all day. She was keeping an eye on her two newborns, both of whom had apparently been safe in hiding all this time!
How cute are they? It's hard to see from the poor quality of the photos (taken through a window screen), but there's a lizard with the two bunnies in that last picture. He seemed to take a liking to them, and the three hung out together for several days.
It was fun to watch as the little ones explored their surroundings and became acquainted with each other. One seemed to be rather adventurous, bravely traveling far in his exciting explorations each day, while the other preferred to stay near home and close to his mother.
I haven't seen any of them in a week or two. Perhaps now that the kids are all grown up, everyone may have moved on to bigger and more exciting things. :)
There are quite a few round-tailed squirrels who climb the tree outside my window each day as well, looking for mesquite beans. Here are a couple photos of them perusing the branches for some food.
Living in Arizona, I often see a fair share of creepy, crawly lizards as well. I'm not quite as fond of them as I am of some of the other creatures who roam outside, but they are still interesting to look at from a distance...
And of course, the tree and feeders still attract lots of birds. My favorites are the cardinals and finches. I love how they brighten the desert with their joyful songs and vivid colors. Here is a yellow goldfinch sitting on one of the mesquite tree branches, waiting patiently for his turn at the feeder.
But my most interesting visitor of late was one that actually took me a bit by surprise. I was laying here in bed (that's not the surprising part) listening to an audio-book when I suddenly heard a bit of a thud. I looked up and saw something had perched itself onto the screen of my window. It was hard to make out exactly what it was at first, as it was in a bit of an awkward position:
Contrary to what it looks like, that's not a giant bird hanging upside down from a tree branch. :) He's moving himself around on my window screen.
It wasn't until the bird settled himself and peeked in to look at me that I realized this was not an ordinary bird. It was an elf owl!
Elf owls are named after their small size, often just 6 inches in length. They are the smallest owls in the world. They are also nocturnal, and typically nest in natural tree cavities or abandoned woodpecker holes of saguaro cacti. It is therefore very rare to ever see them in the daytime. In over a decade of living in the Southwest, this was my first glimpse of one. Not that I actually get out much, of course, but still. It was quite a treat.
We stared at each other for awhile, and I'm not sure who found the other more interesting.
After his curiosity was apparently satisfied, he decided to do a little dance of sorts before flying away.
I've also had another bird who seems to like to peek in on me every now and then. For two days straight, he would fly to my window and seem to look inside, chirp at me, then fly away and come back for another look a few seconds later. This actually went on for hours and hours. It was hard to get a photo of him as he moved around so fast, but here is one of the few I snapped as he was checking me out (or, more likely, admiriing his own reflection).
Peeping Tom
I'm hoping more excitement is soon on its way, this time in the form of a certain paper published in the Proceedings of the National Academy of Sciences. I could use some really good news.
Sunday, August 8, 2010
Primetime Live: CFS and the CDC
The below is a PrimeTime Live news story on ME/CFS from 1996. It covers the history of the original outbreaks in the U.S., as well as the complete lack of a response from the CDC. It is a must-see.
I think what struck me most about the segment was the fact that, though the story aired 14 years ago, virtually nothing has changed since that time. For decades now, the CDC has continuously belittled and essentially ignored this very serious and widespread disease. Meanwhile, millions of those stricken with ME/CFS have continued to suffer and watch their lives slip away, and millions more worldwide have become newly diagnosed. Nearly 30 years since the original outbreak, there are still no viable treatments, very little funding, and a serious lack of answers. How far would we be now in research and treatment had the Centers for Disease Control simply done their job at the onset?
Primetime from Barborka on Vimeo.
You can also see the segment on youtube by clicking the link below:
The CDC and CFS
On a more personal note, it's been a rough month for me with another frustrating crash, and all the subsequent disappointments that coincide with any setback. Things seem a tiny bit better in the last few days, though, and that gives me some hope. Fingers crossed some positive changes are coming soon!
I think what struck me most about the segment was the fact that, though the story aired 14 years ago, virtually nothing has changed since that time. For decades now, the CDC has continuously belittled and essentially ignored this very serious and widespread disease. Meanwhile, millions of those stricken with ME/CFS have continued to suffer and watch their lives slip away, and millions more worldwide have become newly diagnosed. Nearly 30 years since the original outbreak, there are still no viable treatments, very little funding, and a serious lack of answers. How far would we be now in research and treatment had the Centers for Disease Control simply done their job at the onset?
Primetime from Barborka on Vimeo.
You can also see the segment on youtube by clicking the link below:
The CDC and CFS
On a more personal note, it's been a rough month for me with another frustrating crash, and all the subsequent disappointments that coincide with any setback. Things seem a tiny bit better in the last few days, though, and that gives me some hope. Fingers crossed some positive changes are coming soon!
Saturday, July 17, 2010
In Fifteen Years
I can remember a day when I was 15 years old, sitting on my bedroom floor and writing in my journal. I was upset about something I can no longer recall; no doubt some kind of teenage-related angst that would seem terribly insignificant to me now.
As I scribbled out my frustrations, I remember stopping for a moment, closing my eyes and leaning back against my bed. I envisioned myself 15 years into the future. I would be 30 years old. I would be an independent woman, capable and confident and free to make my own decisions. I would have finished college and graduate school, and would be well into the start of my career. Hopefully I'd be married, perhaps even with a young child or two. My life would be filled with travel and adventure, as well as the mundane but simple things that make life so spectacular. I'd wake up excited to go to work each morning or stay home to care for my children. My husband and I would be sharing in the pride of our new life together. We'd be celebrating holidays with friends and family in our own home, making new traditions as we created what was sure to become an abundance of cherished memories.
Perhaps, in my somewhat young naivety, this vision of my future was a bit overly simplistic in its perfection. Certainly, my life would not be without problems. However, I still can recall the tremendous sense of peace that vision gave me. Whatever troubles I had in the present moment would then be long forgotten. Life would be sweet, and everything would turn out fine.
Unfortunately, though, that's not quite how things happened. At 30, not only was I not married with children, but I wasn't dating. I was not establishing myself in my career, but instead was forced to apply for long term disability. Far from independent, I required assistance with virtually all tasks of daily living. I had already been ill for six long years, and essentially bedridden for nearly two. I could barely speak above a whisper. The only traveling I did was making short trips to the bathroom and kitchen a few times a day, and those few steps were quite a feat for me (they are steps I can no longer take). The memories being created were not of cherished moments, but of struggle and frustration within the four walls of my small apartment as I lay in solitary confinement.
I often wonder now, what I would have thought had I known in that moment, at 15 years old, the truth of how my life would turn out. What would I think now, if I knew the truth of where my life would be 15 years from this moment?
When I think of that young, sweet, innocent 15 year old girl, full of hope and longing, with endless goals and dreams, I want to tell her I'm sorry. I want to tell her I'm sorry for what she did not know would become so many lost opportunities, so many lost dreams, and so many lost hopes. I want to tell her I'm sorry for all the pain she would soon endure, the endless days of sickness that would grow into months and years without a single moment of genuine reprieve. I'm sorry for the paucity of answers that would be offered to her, the absence of a real treatment for any of her symptoms, and the overwhelming frustrations she would face in battling such an all consuming, devastating, and invisible disease. Perhaps most of all, I want to tell her that I'm sorry I couldn't do anything to protect her.
Of course, I want to tell her, too, that despite things not unfolding how she planned, some parts of her story did turn out okay. She still found love with an extraordinary man. She still has many things she can list as accomplishments, even if they aren't the types of things she'd have previously realized or appreciated as such. She still has countless memories and blessings to cherish, close friends and family, and many things about which she can feel very proud. Even when severely limited, life can still have its moments of joy. It can still be fulfilling.
It's now been eight years since my 30th birthday. It won't be long now before I'm 40. If you were to ask me how I envision my future 15 years from today, I would admit I'm not quite as confident in what I see. Life, I've learned, is uncertain. But somehow I still hold that same vision of myself I conjured up so many years ago, and I remain hopeful it is a vision that will someday fully become a reality. It may come much later than I had anticipated, but it may still come. That 15 year old girl still lives inside me, and she is not yet willing to let go of her dreams.
As I scribbled out my frustrations, I remember stopping for a moment, closing my eyes and leaning back against my bed. I envisioned myself 15 years into the future. I would be 30 years old. I would be an independent woman, capable and confident and free to make my own decisions. I would have finished college and graduate school, and would be well into the start of my career. Hopefully I'd be married, perhaps even with a young child or two. My life would be filled with travel and adventure, as well as the mundane but simple things that make life so spectacular. I'd wake up excited to go to work each morning or stay home to care for my children. My husband and I would be sharing in the pride of our new life together. We'd be celebrating holidays with friends and family in our own home, making new traditions as we created what was sure to become an abundance of cherished memories.
Perhaps, in my somewhat young naivety, this vision of my future was a bit overly simplistic in its perfection. Certainly, my life would not be without problems. However, I still can recall the tremendous sense of peace that vision gave me. Whatever troubles I had in the present moment would then be long forgotten. Life would be sweet, and everything would turn out fine.
Unfortunately, though, that's not quite how things happened. At 30, not only was I not married with children, but I wasn't dating. I was not establishing myself in my career, but instead was forced to apply for long term disability. Far from independent, I required assistance with virtually all tasks of daily living. I had already been ill for six long years, and essentially bedridden for nearly two. I could barely speak above a whisper. The only traveling I did was making short trips to the bathroom and kitchen a few times a day, and those few steps were quite a feat for me (they are steps I can no longer take). The memories being created were not of cherished moments, but of struggle and frustration within the four walls of my small apartment as I lay in solitary confinement.
I often wonder now, what I would have thought had I known in that moment, at 15 years old, the truth of how my life would turn out. What would I think now, if I knew the truth of where my life would be 15 years from this moment?
When I think of that young, sweet, innocent 15 year old girl, full of hope and longing, with endless goals and dreams, I want to tell her I'm sorry. I want to tell her I'm sorry for what she did not know would become so many lost opportunities, so many lost dreams, and so many lost hopes. I want to tell her I'm sorry for all the pain she would soon endure, the endless days of sickness that would grow into months and years without a single moment of genuine reprieve. I'm sorry for the paucity of answers that would be offered to her, the absence of a real treatment for any of her symptoms, and the overwhelming frustrations she would face in battling such an all consuming, devastating, and invisible disease. Perhaps most of all, I want to tell her that I'm sorry I couldn't do anything to protect her.
Of course, I want to tell her, too, that despite things not unfolding how she planned, some parts of her story did turn out okay. She still found love with an extraordinary man. She still has many things she can list as accomplishments, even if they aren't the types of things she'd have previously realized or appreciated as such. She still has countless memories and blessings to cherish, close friends and family, and many things about which she can feel very proud. Even when severely limited, life can still have its moments of joy. It can still be fulfilling.
It's now been eight years since my 30th birthday. It won't be long now before I'm 40. If you were to ask me how I envision my future 15 years from today, I would admit I'm not quite as confident in what I see. Life, I've learned, is uncertain. But somehow I still hold that same vision of myself I conjured up so many years ago, and I remain hopeful it is a vision that will someday fully become a reality. It may come much later than I had anticipated, but it may still come. That 15 year old girl still lives inside me, and she is not yet willing to let go of her dreams.
Monday, June 21, 2010
Illness & Invisibility
Myalgic encephalomyelitis (ME), sometimes inaccurately referred to as chronic fatigue syndrome (CFS), is a serious, complex and multi-systemic disease. It is often included in the realm of invisible illnesses because, for the most part, patients don't actually look sick.
While the symptom severity of ME varies from patient to patient, the disability levels of those more seriously afflicted have been compared to patients with MS, heart failure, cancer or even late-stage AIDS. Yet, to the unobservant eye, even the sickest of patients who are wheelchair or bed-bound will still appear otherwise healthy. At least, we appear healthier than we really are.
This, of course, can create misunderstanding, and leaves those who are perhaps less educated about the illness to erroneously assume it's not as serious as it is. The inappropriate use of and association with the name chronic fatigue syndrome further adds to this misunderstanding by belittling the illness and making it sound like we are all just a little extra sleepy. As a result, some patients can actually feel embarrassed to tell people that they have ME and will instead attempt to conceal it from others, only informing their closest friends and family members.
ME is an invisible illness in other ways as well. One of the most debilitating symptoms of this disease is what is called post exertional malaise -- a worsening of symptoms with even the most minor exertion. So, while some ME sufferers may look perfectly normal one day when engaging in some kind of activity, the strain of that activity could end up leaving the person home/bed-bound, and thus invisible, for days, weeks or even months.
In addition, it has been estimated that 25% of ME patients are fully disabled from the disease, and many of those (like myself) are homebound or completely bedridden for years on end. As such, no one sees or hears us. Often, no one beyond our immediate family and friends even knows about us.
To compound this even further, there's also the invisibility that arises from society's response to chronic illness in general. Society typically doesn't look all that well upon an illness that doesn't ultimately resolve or improve. With all of the advancements and high success rates found in modern medicine, there is little patience for an illness that has no clear answers.
There also tends to be a common-held belief within the general public that we are in control of our own health and that, with enough determination, there's nothing that can't be overcome. While this idea can be inspiring and empowering, it can also leave the sick person feeling as though they are to blame for being ill, or that somehow they are doing something wrong -- even if there are no viable treatments available to them. People generally want to hear that you are triumphing over disease, not being beaten by it. They want to hear success stories. The sick person is very keenly aware of this, and many will thus (at least to some degree) keep their suffering to themselves.
Furthermore, the sick will often keep silent on the details of their illness because they don't want to burden their loved ones, nor cause them to feel any discomfort or pain as a result of their own suffering. They want to appear strong, and they don't want to be seen as a nuisance.
Even now after having become bedbound from ME, I find I still often spend a great deal of energy trying to hide the severity of my illness from others as much as possible. I don't want people to worry or feel any discomfort. I don't want to be "that" person -- the type who is always talking about her illness, even though it has become such an all-encompassing part of my life. I want people to see me for me, not my illness. And sometimes I don't know any other way to ensure that is the case without trying to hide, as much as I can, that I'm feeling as sick as I am.
I am writing today of this latter form of invisibility because I've been thinking about it quite a bit after having recently stumbled upon a blog called Notes from Nonsuch, written by a woman named Sara who loves to garden. She also has cancer. Apparently, it's terminal.
In one particular blog entry [now removed], she writes directly and poignantly about how society in general does not deal with illness or death very well. "There is a great silence about the subject, " she says, "and a great silence imposed on the dying."
Sara goes on to describe how, as with sickness in general, it is oftentimes the dying who comfort the healthy, rather than the other way around. They tend to pretend all is fine, tell everyone not to worry, and silence their fears and complaints of bodily pain -- all this to make sure those around them suffer as little as possible. Meanwhile, this can make the patient feel as though they are ultimately dealing with their struggle largely on their own.
Sara also points out that many people will prefer to keep their support at a fairly comfortable distance. Family and friends will of course offer well-intentioned cards, flowers and teddy bears, as well as promises that they will be in their thoughts. And while this is all no doubt generous and appreciated, what many of the dying really yearn for is someone to be fully present with them. They yearn for someone to listen quietly to their story and allow them to express all the fear and pain of their experiences, and to hold their hand through the final stages of the journey.
In today's society, however, the dying are often instead sent to nursing homes and hospices, where it is not uncommon for them to end up dying alone.
Sara talks about how this also applies to some degree to the chronically ill. She writes:
I am tremendously fortunate to have wonderful and loving parents, an absolutely amazing fiance, and some loyal and life-long friends who offer me support, comfort and assistance on a regular (if not daily) basis. I am greatly indebted to them for their kindness and compassion throughout these many years. But I, too, have regretfully seen many friends slowly either distance themselves or disappear entirely. While each will have their own various reasons for this (none for which I really blame them), I think much of it has to do with the general unease people feel about chronic illness. As Sara writes, "Modern attention spans for the chronically ill are horribly short, probably because chronic or terminal illness in today’s society is horribly tedious. Tedious, because we are all so uncomfortable with it."
I think part of this discomfort is that people don't often know what they are supposed to do to help, and they don't like feeling helpless. ME also brings with it more challenges and complications in this regard than most other illnesses, as we often can't tolerate social visits anyway. It can be hard for some of us to even write or talk on the phone. As a result, the interaction that comes from someone's well-intentioned assistance can sometimes actually be more taxing than helpful. Thus, in the case of ME, some people may keep a distance quite simply because they assume (correctly or incorrectly) that it's in the best interest of the patient.
And then there's the fact that people just don't know what to say after awhile. I recently read (or listened to the audio version of) the book Naked by David Sedaris. In it, he describes how illness affected his relationship with his mother after she'd been diagnosed with cancer:
I've had people tell me that, were they in my shoes, they don't think they could find it in themselves to go on. But the thing is, I wouldn't have thought I could handle this either. And yet, here I am. Sick or healthy, our lives are our lives and we all do what we can to deal with the hand that was dealt to us. When illness strikes, most of us find out we are a lot stronger than we ever realized.
I think the important thing to remember when someone falls ill is that they are the same person they always were. Their bodies may have declined, but they themselves remain essentially the same. In the end, the only difference between a healthy person and a sick person is that one just happened to be a bit less fortunate than the other.
Ultimately, I believe what the sick really want is merely to be recognized. We don't want to be known for being sick, but we want to be acknowledged that we are indeed fighting the fight, and we are not alone.
We want some way to be visible again.
While the symptom severity of ME varies from patient to patient, the disability levels of those more seriously afflicted have been compared to patients with MS, heart failure, cancer or even late-stage AIDS. Yet, to the unobservant eye, even the sickest of patients who are wheelchair or bed-bound will still appear otherwise healthy. At least, we appear healthier than we really are.
This, of course, can create misunderstanding, and leaves those who are perhaps less educated about the illness to erroneously assume it's not as serious as it is. The inappropriate use of and association with the name chronic fatigue syndrome further adds to this misunderstanding by belittling the illness and making it sound like we are all just a little extra sleepy. As a result, some patients can actually feel embarrassed to tell people that they have ME and will instead attempt to conceal it from others, only informing their closest friends and family members.
ME is an invisible illness in other ways as well. One of the most debilitating symptoms of this disease is what is called post exertional malaise -- a worsening of symptoms with even the most minor exertion. So, while some ME sufferers may look perfectly normal one day when engaging in some kind of activity, the strain of that activity could end up leaving the person home/bed-bound, and thus invisible, for days, weeks or even months.
In addition, it has been estimated that 25% of ME patients are fully disabled from the disease, and many of those (like myself) are homebound or completely bedridden for years on end. As such, no one sees or hears us. Often, no one beyond our immediate family and friends even knows about us.
To compound this even further, there's also the invisibility that arises from society's response to chronic illness in general. Society typically doesn't look all that well upon an illness that doesn't ultimately resolve or improve. With all of the advancements and high success rates found in modern medicine, there is little patience for an illness that has no clear answers.
There also tends to be a common-held belief within the general public that we are in control of our own health and that, with enough determination, there's nothing that can't be overcome. While this idea can be inspiring and empowering, it can also leave the sick person feeling as though they are to blame for being ill, or that somehow they are doing something wrong -- even if there are no viable treatments available to them. People generally want to hear that you are triumphing over disease, not being beaten by it. They want to hear success stories. The sick person is very keenly aware of this, and many will thus (at least to some degree) keep their suffering to themselves.
Furthermore, the sick will often keep silent on the details of their illness because they don't want to burden their loved ones, nor cause them to feel any discomfort or pain as a result of their own suffering. They want to appear strong, and they don't want to be seen as a nuisance.
Even now after having become bedbound from ME, I find I still often spend a great deal of energy trying to hide the severity of my illness from others as much as possible. I don't want people to worry or feel any discomfort. I don't want to be "that" person -- the type who is always talking about her illness, even though it has become such an all-encompassing part of my life. I want people to see me for me, not my illness. And sometimes I don't know any other way to ensure that is the case without trying to hide, as much as I can, that I'm feeling as sick as I am.
I am writing today of this latter form of invisibility because I've been thinking about it quite a bit after having recently stumbled upon a blog called Notes from Nonsuch, written by a woman named Sara who loves to garden. She also has cancer. Apparently, it's terminal.
In one particular blog entry [now removed], she writes directly and poignantly about how society in general does not deal with illness or death very well. "There is a great silence about the subject, " she says, "and a great silence imposed on the dying."
Sara goes on to describe how, as with sickness in general, it is oftentimes the dying who comfort the healthy, rather than the other way around. They tend to pretend all is fine, tell everyone not to worry, and silence their fears and complaints of bodily pain -- all this to make sure those around them suffer as little as possible. Meanwhile, this can make the patient feel as though they are ultimately dealing with their struggle largely on their own.
Sara also points out that many people will prefer to keep their support at a fairly comfortable distance. Family and friends will of course offer well-intentioned cards, flowers and teddy bears, as well as promises that they will be in their thoughts. And while this is all no doubt generous and appreciated, what many of the dying really yearn for is someone to be fully present with them. They yearn for someone to listen quietly to their story and allow them to express all the fear and pain of their experiences, and to hold their hand through the final stages of the journey.
In today's society, however, the dying are often instead sent to nursing homes and hospices, where it is not uncommon for them to end up dying alone.
Sara talks about how this also applies to some degree to the chronically ill. She writes:
Let me discuss chronic illness for a moment. As a society we don’t tolerate it very well. Our collective attention span for someone who is ill lasts about two weeks... After a while, and only a relatively short while, people grow bored with you not getting any better and just drift off. Phone calls stop. Visits stop. Emails stop. ...Eyes glaze when you say you are still not feeling well. Who needs perpetual bad news?
...The end result is, of course, that the sick simply stop telling people how bad they feel. They repress all their physical and emotional pain, because they’ve got the message loud and clear.
I am tremendously fortunate to have wonderful and loving parents, an absolutely amazing fiance, and some loyal and life-long friends who offer me support, comfort and assistance on a regular (if not daily) basis. I am greatly indebted to them for their kindness and compassion throughout these many years. But I, too, have regretfully seen many friends slowly either distance themselves or disappear entirely. While each will have their own various reasons for this (none for which I really blame them), I think much of it has to do with the general unease people feel about chronic illness. As Sara writes, "Modern attention spans for the chronically ill are horribly short, probably because chronic or terminal illness in today’s society is horribly tedious. Tedious, because we are all so uncomfortable with it."
I think part of this discomfort is that people don't often know what they are supposed to do to help, and they don't like feeling helpless. ME also brings with it more challenges and complications in this regard than most other illnesses, as we often can't tolerate social visits anyway. It can be hard for some of us to even write or talk on the phone. As a result, the interaction that comes from someone's well-intentioned assistance can sometimes actually be more taxing than helpful. Thus, in the case of ME, some people may keep a distance quite simply because they assume (correctly or incorrectly) that it's in the best interest of the patient.
And then there's the fact that people just don't know what to say after awhile. I recently read (or listened to the audio version of) the book Naked by David Sedaris. In it, he describes how illness affected his relationship with his mother after she'd been diagnosed with cancer:
I'd always been afraid of sick people, and so had my mother. It wasn’t that we feared catching their brain aneurysm or accidentally ripping out their IV. I think it was their fortitude that frightened us. Sick people reminded us not of what we had, but of what we lacked. Everything we said sounded petty and insignificant; our complaints paled in the face of theirs, and without our complaints, there was nothing to say. My mother and I had been fine over the telephone, but now, face to face, the rules had changed. If she were to complain, she'd risk being seen as a sick complainer, the worst kind of all. If I were to do it, I might come off sounding even more selfish than I actually was. This sudden turn of events had robbed us of our common language, leaving us to exchange the same innocuous pleasantries we'd always made fun of. I wanted to stop it and so, I think, did she. But neither of us knew how.There's no doubt that illness is awkward. It changes the dynamics of relationships, and it reminds others of just how fragile life truly is. And perhaps that's really the core of the discomfort: the idea that our health, and thus our lives, could be turned upside down in a blink of an eye, and there may be very little we could do about it. And that leads to some uncomfortable questions: Why one person and not another? What if that happened to me? Could I handle it? Could I cope?
I've had people tell me that, were they in my shoes, they don't think they could find it in themselves to go on. But the thing is, I wouldn't have thought I could handle this either. And yet, here I am. Sick or healthy, our lives are our lives and we all do what we can to deal with the hand that was dealt to us. When illness strikes, most of us find out we are a lot stronger than we ever realized.
I think the important thing to remember when someone falls ill is that they are the same person they always were. Their bodies may have declined, but they themselves remain essentially the same. In the end, the only difference between a healthy person and a sick person is that one just happened to be a bit less fortunate than the other.
Ultimately, I believe what the sick really want is merely to be recognized. We don't want to be known for being sick, but we want to be acknowledged that we are indeed fighting the fight, and we are not alone.
We want some way to be visible again.
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| "The Sick Child" by Edvard Munch |
Tuesday, June 8, 2010
Determined Spirits
In this month's Life Skills Magazine, there is a special "bumper" edition which is devoted and dedicated to all those determined spirits who suffer from ME/CFS/CFIDS.
I feel incredibly honored to have been invited to participate in this wonderful opportunity to help raise awareness. My submission is called Recognition and Reflection. It is a 2001 journal entry written shortly after I first became home/bedbound and unable to speak more than a few words above a whisper. I had hoped to write something brand new for the purpose of the magazine, but regretfully I was too sick at the time, so I had to go with something already written.
In the magazine, you will also find some fabulous contributions from:
Dominique of 4 Walls and a View
Sue of Learning To Live With CFS
Jolene of Graceful Agony
Renee of My Autumn Years and Renee's Reflections
Shelli of A * Musings and Living the CFS Life
This is my first magazine publication, so I'm pretty excited about it, and feel privileged to be included with such wonderful writers and some fellow blogging friends I've long admired.
If you'd like to see the magazine and any of the above articles, you can go to Life Skills Magazine and subscribe. It's free!
Well done to all involved! And much gratitude and thanks to Dominique who invited me to participate, and Ayo (the magazine's founder and editor) who accepted my contribution. It's been such an honor!
Edit: Links have been removed as the magazine has been discontinued.
I feel incredibly honored to have been invited to participate in this wonderful opportunity to help raise awareness. My submission is called Recognition and Reflection. It is a 2001 journal entry written shortly after I first became home/bedbound and unable to speak more than a few words above a whisper. I had hoped to write something brand new for the purpose of the magazine, but regretfully I was too sick at the time, so I had to go with something already written.
In the magazine, you will also find some fabulous contributions from:
Dominique of 4 Walls and a View
Sue of Learning To Live With CFS
Jolene of Graceful Agony
Renee of My Autumn Years and Renee's Reflections
Shelli of A * Musings and Living the CFS Life
This is my first magazine publication, so I'm pretty excited about it, and feel privileged to be included with such wonderful writers and some fellow blogging friends I've long admired.
If you'd like to see the magazine and any of the above articles, you can go to Life Skills Magazine and subscribe. It's free!
Well done to all involved! And much gratitude and thanks to Dominique who invited me to participate, and Ayo (the magazine's founder and editor) who accepted my contribution. It's been such an honor!
Edit: Links have been removed as the magazine has been discontinued.
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