**Author's note: One of the new/aggravated symptoms I'm dealing with is, for lack of a better term, short term memory loss. I believe I can attribute this to the pain medication I'm on, but it does make for some interesting experiences. This post, for example, was written while I was literally falling asleep at the keyboard. It was totally coherent and even eloquent to me at the time, because I knew what I was trying to convey. The next day, when I realized that I had written a post (because I'd forgotten that I had, actually!) I came over to read it because, naturally, I couldn't remember what I'd written. I found it to be… not quite as lucid as I had thought it was. Apologies. If you can muddle through this and make sense of it, I just may hire you to be my FibroFog Interpreter. I didn't want to delete this, though, because I mean… it's my writing. A piece of myself, coherent or not. So, here it shall remain, if only as a testament to "this is your brain on drugs".**
I'm given to understand that there are many "steps" when it comes to acceptance and grieving of a chronic illness. It may not immediately seem clear as to why someone would need to "grieve" when they're clearly still alive. I mean, grieving is for when people die or you break up or something, when a relationship is lost… right? Right. However, unless you've encountered it yourself, seen it in the life of someone you know (to whatever degree of closeness), or have just thought about it quite intently, it's unlikely that anyone would understand the phenomenal amount of loss involved with a chronic illness diagnosis and the life after the diagnosis. I spoke of death just now; in a very real sense, a diagnosis of a chronic illness is both the death knell for the "old life" and the harsh squall of the newborn as a "new life" unfolds before the patient. Due to the completely unpredictable and generally misunderstood nature of chronic illnesses, though, many times that life unfolds only minutes at a time. There are no grand, sweeping vista of plans and ambitions or sweet, sleepy forests of peaceful routine followed decade by decade.
The landscape of the chronically ill and the average healthy citizen can appear deceptively similar to the casual observer. Often, the land of the ill is surveyed with a passing glance and dismissed with a nonchalant, "you don't look sick!" After all, the sun still speckles brightly along warm earth paths of smiles and laughter, mountains of various sizes and relative distances are scattered through the view, and always, always, the loud gushing streams of cool forward momentum and purpose weave and twist their way in and out of both expected and unanticipated settings. Look closer, though, and you will see troubling changes that stir up an unease within, changes that make you want to run for your life lest you be contaminated as well and your own precious world poisoned.
The straight furrows of garden plots are worn and cracked, dry with fatigue yet managing to bring forth a feeble crop. The cheerful cottages, clearly once a source of pride and sustained labor, now seem to troop sadly across verdant meadows bare of livestock. Lush banks of flowers cover crumbling masonry and low, stooped walls, draping the entire panorama in a rippling, delicate gown of every hue imaginable. The colors are a riot, but blend together to create the most intricate and exquisite of tapestries; every bloom is perfectly placed, from the single frothy Queen Anne's Lace to the tightly bunched carpet of creeping phlox, and what could have been hills barren and uneven becomes a spectacular faceted gem of pure joy.
The chronic illness world can be a harsh, ugly place. The cottages and relationships that we have so carefully labored over and constructed with our own hands through years and years of work, they often fall into some state of disrepair. Those who live in the cottages can do some of the upkeep themselves, but the true purpose of the cottages demands a synchronistic cooperation in order to truly thrive. Beyond the cottages, the near-empty fields mutely allude to the loss of hobby and gainful employment. The sweet silence of the air brings a sharp contrast to the usual sounds of looms clacking, animal noises, children squealing and squabbling; the normal sounds of a busy life have been replaced with a hollow, pealing silence that resonates down to the very bones.
The flowers though; ah, the flowers. The flowers make it all bearable, if not tolerable. The origin is unknown except to the owner of the valley, but such a rich and varied selection is found but rarely outside the landscape belonging to the chronically ill. It seems that the soil of normal lives just does not cultivate the proper atmosphere or soil in order for the plants to grow to their fullest and most luxurious. Well-groomed flower gardens can be seen among the graceful landscaping of nature itself where people have taken to cultivating particular joys and gratitudes, while others appear to be content to take theirs wild and unsolicited.
In my mind's eye, my landscape looks much like north central Idaho, or perhaps western Montana. It is rugged and choppy, coated with mountains and sheer cliffs and whitewater rivers dashing themselves ever downward. It is sparsely populated, and those that are there tend to keep to themselves and be self-sufficient-- no coddling these cottages. Practicality reigns supreme, yet nature itself inspires a veneer of beauty to soften the edges and uplift the heart. Those same rugged mountains are swathed in dark evergreen forest, underlaid with countless varieties of bush and berry and other barks. The seasons change, time inexorably marches on, and even the death that time inevitably brings wears naught but a thin, shimmering mantle, spinning and flaring in the sudden colors of Fall before the cloak is thrown aside and the naked white bones of the world come to the fore of collective consciousness.
The landscape of my illness is part beauty, part blight. Pockmarked scabs of raw gashes in the earth can be found mere steps from a tranquil, dainty pond embroidered with ferns and sweet puffing breezes. I can always find flowers to sustain me, even if it's just one, but the wanton loss, destruction, and waste that I see around me as my world crumbles… it sears my soul with a thousand putrid colors that I dare not do anything with but swallow. Every day is another Pandora's box: the lid is cracked open by morning light, the evils escape and howl through the welkin to begin their outrage anew, and Pandora slams the lid shut tight, having only hope left to herself.
The thoughts and feelings of such a continuous cycle of dismay and disappointment take a heavy toll, and the words do not come easy. They boil and roll around inside of my head and my heart, percolating all the way down to my fingertips… but at the last minute my heavy heart shakes her head and says it's too much, too much, and we're all (all of us pieces parts together) too tired to argue so we cover our eyes and turn slightly to the left, hoping that the results will scatter in the sweetly sweeping breeze. They never do, and I grow heavier and heavier as I wait for the words to finally squeeze themselves from my very pores and splash across the page. I wait for the words to write themselves, to unwrap the weighted intensity of themselves and float out into the world, because I don't understand them while they are inside of me, not really, and if I can read what they have to say about themselves then I just might be able to make some sense out of all of this. My landscape is beautiful, in its own way, but it is also terribly confusing and wickedly deceptive, and I am afraid that someday I may drown in my own confidence.
I'm given to understand that there are many "steps" when it comes to acceptance and grieving of a chronic illness. It may not immediately seem clear as to why someone would need to "grieve" when they're clearly still alive. I mean, grieving is for when people die or you break up or something, when a relationship is lost… right? Right. However, unless you've encountered it yourself, seen it in the life of someone you know (to whatever degree of closeness), or have just thought about it quite intently, it's unlikely that anyone would understand the phenomenal amount of loss involved with a chronic illness diagnosis and the life after the diagnosis. I spoke of death just now; in a very real sense, a diagnosis of a chronic illness is both the death knell for the "old life" and the harsh squall of the newborn as a "new life" unfolds before the patient. Due to the completely unpredictable and generally misunderstood nature of chronic illnesses, though, many times that life unfolds only minutes at a time. There are no grand, sweeping vista of plans and ambitions or sweet, sleepy forests of peaceful routine followed decade by decade.
The landscape of the chronically ill and the average healthy citizen can appear deceptively similar to the casual observer. Often, the land of the ill is surveyed with a passing glance and dismissed with a nonchalant, "you don't look sick!" After all, the sun still speckles brightly along warm earth paths of smiles and laughter, mountains of various sizes and relative distances are scattered through the view, and always, always, the loud gushing streams of cool forward momentum and purpose weave and twist their way in and out of both expected and unanticipated settings. Look closer, though, and you will see troubling changes that stir up an unease within, changes that make you want to run for your life lest you be contaminated as well and your own precious world poisoned.
The straight furrows of garden plots are worn and cracked, dry with fatigue yet managing to bring forth a feeble crop. The cheerful cottages, clearly once a source of pride and sustained labor, now seem to troop sadly across verdant meadows bare of livestock. Lush banks of flowers cover crumbling masonry and low, stooped walls, draping the entire panorama in a rippling, delicate gown of every hue imaginable. The colors are a riot, but blend together to create the most intricate and exquisite of tapestries; every bloom is perfectly placed, from the single frothy Queen Anne's Lace to the tightly bunched carpet of creeping phlox, and what could have been hills barren and uneven becomes a spectacular faceted gem of pure joy.
The chronic illness world can be a harsh, ugly place. The cottages and relationships that we have so carefully labored over and constructed with our own hands through years and years of work, they often fall into some state of disrepair. Those who live in the cottages can do some of the upkeep themselves, but the true purpose of the cottages demands a synchronistic cooperation in order to truly thrive. Beyond the cottages, the near-empty fields mutely allude to the loss of hobby and gainful employment. The sweet silence of the air brings a sharp contrast to the usual sounds of looms clacking, animal noises, children squealing and squabbling; the normal sounds of a busy life have been replaced with a hollow, pealing silence that resonates down to the very bones.
The flowers though; ah, the flowers. The flowers make it all bearable, if not tolerable. The origin is unknown except to the owner of the valley, but such a rich and varied selection is found but rarely outside the landscape belonging to the chronically ill. It seems that the soil of normal lives just does not cultivate the proper atmosphere or soil in order for the plants to grow to their fullest and most luxurious. Well-groomed flower gardens can be seen among the graceful landscaping of nature itself where people have taken to cultivating particular joys and gratitudes, while others appear to be content to take theirs wild and unsolicited.
In my mind's eye, my landscape looks much like north central Idaho, or perhaps western Montana. It is rugged and choppy, coated with mountains and sheer cliffs and whitewater rivers dashing themselves ever downward. It is sparsely populated, and those that are there tend to keep to themselves and be self-sufficient-- no coddling these cottages. Practicality reigns supreme, yet nature itself inspires a veneer of beauty to soften the edges and uplift the heart. Those same rugged mountains are swathed in dark evergreen forest, underlaid with countless varieties of bush and berry and other barks. The seasons change, time inexorably marches on, and even the death that time inevitably brings wears naught but a thin, shimmering mantle, spinning and flaring in the sudden colors of Fall before the cloak is thrown aside and the naked white bones of the world come to the fore of collective consciousness.
The landscape of my illness is part beauty, part blight. Pockmarked scabs of raw gashes in the earth can be found mere steps from a tranquil, dainty pond embroidered with ferns and sweet puffing breezes. I can always find flowers to sustain me, even if it's just one, but the wanton loss, destruction, and waste that I see around me as my world crumbles… it sears my soul with a thousand putrid colors that I dare not do anything with but swallow. Every day is another Pandora's box: the lid is cracked open by morning light, the evils escape and howl through the welkin to begin their outrage anew, and Pandora slams the lid shut tight, having only hope left to herself.
The thoughts and feelings of such a continuous cycle of dismay and disappointment take a heavy toll, and the words do not come easy. They boil and roll around inside of my head and my heart, percolating all the way down to my fingertips… but at the last minute my heavy heart shakes her head and says it's too much, too much, and we're all (all of us pieces parts together) too tired to argue so we cover our eyes and turn slightly to the left, hoping that the results will scatter in the sweetly sweeping breeze. They never do, and I grow heavier and heavier as I wait for the words to finally squeeze themselves from my very pores and splash across the page. I wait for the words to write themselves, to unwrap the weighted intensity of themselves and float out into the world, because I don't understand them while they are inside of me, not really, and if I can read what they have to say about themselves then I just might be able to make some sense out of all of this. My landscape is beautiful, in its own way, but it is also terribly confusing and wickedly deceptive, and I am afraid that someday I may drown in my own confidence.
