"They won’t come to learn, only to stare. I’ll be a freak in a sideshow: Lazarus the Second! Fifty cents to look, a dollar to touch."
--Karl Brown (1897–1990), U.S. screenwriter, and Nick Grindé. Dr. Henryk Savaard (Boris Karloff), The Man They Could Not Hang, to his assistant, who suggests that Dr. Savaard go public with his own successful resurrection (1939).
I was in high school. Cathy was in my class. She had the misfortune of being obese. She kept to herself, never bothered anyone. Maybe silence would buy her anonymity, obscurity, peace. She had a small group of friends, social outcasts from all the “other” groups; i.e., the popular crowd, the partiers, the hoods, and the nerds.
I socialized in every circle, finding treasures in every clique’. Winnie, Cindy, and Melanie were the most outgoing of this misfit group. Always, Cathy was silent. She honored me with the exchange of our senior pictures. The photographer had placed Cathy behind a tree, just her pretty face visible in the v split of the trunk. Imperfection, Cathy's weight, was strategically hidden.
I sat in the bleachers as the announcements were made for the “top ten” girls from each class for homecoming queen and court during a school assembly. I was mortified when Cathy’s name was announced. The jeering, laughter, and mockery, from a large sector of boys in my class, (Perpetrators of the stacked vote.), echoed in the gym gathering momentum from others. Cathy had to step forward and stand with the other girls on the gymnasium floor. I wanted to weep at the cruelty.
Cathy’s smile was my first real experience of self-exploitation used as a cover for one’s loneliness at the majority’s ignorance. Avoidance. A smile is a great disguise to cover inner pain. “If you can’t beat them, join them.”
I have joined the realms of a label – disabled. Living with the challenges of my neurological disorder, I have a shared empathy for all challenged individuals. I understand questioning stares, averted glances, and live with the desire to be simply “normal.” I have learned about ignorance, lack of compassion, or sideshow mentality from the spotlight glare of center stage.
Loneliness is an equalizing disability that can affect any individual; often intensified by a physical or mental disability. Social acceptability is based on youth, ability, looks, and sexuality. It is difficult to live up to social standards from the confines of a wheelchair, a labored gait, or wheezing breath.
I was looking at a website for handicapped individuals. I was impressed with the veneer – a forum for physically challenged individuals to meet one another. I looked deeper. I was terribly saddened at my original perception of this site.
The “informative” links were riddled with pornographic websites featuring various disabilities. If people are going to stare, one might as well make the best of it by getting paid for the stares...self-exploitation of choice.
The “altruistic” tone of the website was hypocritical. Money was the motive. People exploited their disabilities, in this situation with pornography, for pay. In turn, those who did the showcasing pocketed a profit under the sugar coating of “10% of the profits go to charity.” The content of this website did not promote understanding. It thrived on the morbid fascination of the 10-cent thrill, freak-peek tent show mentality of years ago.
Some frat brothers at a keg party, “Hey, Smitty, log on to that amputee porn site again. Who has a credit card? Wait ‘til you guys see this!” (Drunken howls in the background.)
Somewhere, the legless lady retrieves a check from her mailbox, the website owner is whistling over the profit in the checkbook, and Cathy remembers.
“I am not an animal! I am a human being! I...am...a man! “
From the film, The Elephant Man
A POEM OFTEN QUOTED BY JOHN MERRICK
Tis true my form is something odd.
But blaming me is blaming God;
Could I create myself anew,
I would not fail in pleasing you.
If I could reach from pole to pole,
Or grasp the ocean with a span,
I would be measured by the soul,
The mind's the standard of the man.
(This poem was used by John Merrick in a pamphlet accompanying his freak show, and later when he wrote to thank people for their generosity in caring for him)
Copyright © 2008
Friday, November 28, 2008
Thursday, November 20, 2008
Acronyms For $1,000.00
Acronyms, a language in itself - our fast-track way of of shortening long words or phrases into condensed, easy to remember letters - silent relief from the spelling bee-challenged. (SBC?)
Computers: URL,ISP,DSL,IE...
Organizations: We have the DNC, RNC, AARP, EEOC, AWU, NRA...
Communications: ASAP, FYI, LOL, BTW, SOS, and so on.
Then comes medical lingo, quite simply, a serious diagnosis, (dx) is round one 'jeopardy.' If your dx has an acronym, you are in double 'jeopardy:' RA, MS, SPS, ALS, CIDP, MD...a final round, lifetime contestant...guaranteed. The qualifying round to be an acronym 'jeopardy' contestant requires extensive dx acronym pretesting: EKG, MRI, EKG, CAT or PET scans. Experience has taught me any test with an acronym will not be pleasant and financially costly.
I have IDDM with SPS. My SPS was diagnosed with an EMG and a GAD-antibody test for compromised GABA. I also had a lumbar puncture to test my CSF. PT is out for me, but I have several RX scripts that help relieve my symptoms, one PRN, another BID, and the last, TID. I receive IVIg from an RN every five weeks, ordered by my MD, an acronym coach.
Alec, I will take acronyms for $1,000.00, please. SOL - What is xxxx out of luck.
I love the promise of simple, one-syllable words like faith, hope, and love.
"Now abideth, faith, hope, and love, these three; but the greatest of these is love."
~I Corinthians 13:13~
Copyright © 2008
Computers: URL,ISP,DSL,IE...
Organizations: We have the DNC, RNC, AARP, EEOC, AWU, NRA...
Communications: ASAP, FYI, LOL, BTW, SOS, and so on.
Then comes medical lingo, quite simply, a serious diagnosis, (dx) is round one 'jeopardy.' If your dx has an acronym, you are in double 'jeopardy:' RA, MS, SPS, ALS, CIDP, MD...a final round, lifetime contestant...guaranteed. The qualifying round to be an acronym 'jeopardy' contestant requires extensive dx acronym pretesting: EKG, MRI, EKG, CAT or PET scans. Experience has taught me any test with an acronym will not be pleasant and financially costly.
I have IDDM with SPS. My SPS was diagnosed with an EMG and a GAD-antibody test for compromised GABA. I also had a lumbar puncture to test my CSF. PT is out for me, but I have several RX scripts that help relieve my symptoms, one PRN, another BID, and the last, TID. I receive IVIg from an RN every five weeks, ordered by my MD, an acronym coach.
Alec, I will take acronyms for $1,000.00, please. SOL - What is xxxx out of luck.
I love the promise of simple, one-syllable words like faith, hope, and love.
"Now abideth, faith, hope, and love, these three; but the greatest of these is love."
~I Corinthians 13:13~
Copyright © 2008
Thursday, November 13, 2008
An Oak Without Limbs
"Fall seven times, stand up eight." ~Japanese Proverb~
Nick is not only a great inspiration to me, from my woman's perspective, he is a hunk. He is witty, fun, a motivational speaker, real estate developer, and he was born without arms or legs. His example encourages me to see beyond my own disabilities to reach my potential. Dream it, believe it, then do it.
Check out these other youtube videos about this extraordinary young man.
Nick Vujicic - Life Without Limbs
Nick Vujicic, No Arms, No Legs, No Worries! Part 1 of 3
Nick Vujicic, No Arms, No Legs, No Worries! Part 2 of 3
Nick Vujicic, No Arms, No Legs, No Worries! Part 3
“Life is like a ten speed bicycle. Most of us have gears we never use.”
~Charles M. Schultz~
Saturday, November 1, 2008
Learning To Fly
Disability comes in many guises, some easily discernible, others subtle, and some hidden...all with physical challenges and emotional battles. Tragic and unexpected.
For some, it is a freakish accident; while others slowly erode to a "D-Day," diagnosis day, the life-altering prognosis of disabling loss of health. I was a D-Day casualty. The first punch of my doctor's pronouncement was a world-stopping moment for me, followed by fear, tears, prayerful pleas, the surreal "not me." Reality settled in. I not only lost my health and physical abilities, but me, my sense of me.
A great deal of how I defined me was what I could do; what I did. Who was I now? What was I? What could I possibly be? It was bizarre to mourn the loss of me. Even now I think of my life as "before," "then," "after," and "now."
"Before" remembers, with a longing nostalgia, my "normal" life with unencumbered movement, carefree thought, my pain free body, and a promising future. "Then" was my soul-sucking verdict, condemning me to life with SPS and diabetes, no parole for good behavior. I suffered in mental solitary for a time, sorting it all out, trying to rediscover me.
"After" was coming to grips with my reality, choosing my path, and finding me. I chose to live positively, grab everything life had to offer within the limitations I had. I realized I never really lost me, just mechanical ability.
"Now," I have evolved in ways I would never have imagined, discovering lost or hidden aspects of me and creating new ones. I discovered a strength I did not know I had, with the occasional meltdown. Determination and imagination have given me insight to a meaningful life, and with that...
A promising future. I do not know what tomorrow may bring; but I embrace hope, push my limits, and am learning to fly, without wings.
“When you have come to the edge Of all light that you know And are about to drop off into the darkness Of the unknown, Faith is knowing One of two things will happen: There will be something solid to stand on or You will be taught to fly”
~Patrick Overton~
Copyright © 2008
For some, it is a freakish accident; while others slowly erode to a "D-Day," diagnosis day, the life-altering prognosis of disabling loss of health. I was a D-Day casualty. The first punch of my doctor's pronouncement was a world-stopping moment for me, followed by fear, tears, prayerful pleas, the surreal "not me." Reality settled in. I not only lost my health and physical abilities, but me, my sense of me.
A great deal of how I defined me was what I could do; what I did. Who was I now? What was I? What could I possibly be? It was bizarre to mourn the loss of me. Even now I think of my life as "before," "then," "after," and "now."
"Before" remembers, with a longing nostalgia, my "normal" life with unencumbered movement, carefree thought, my pain free body, and a promising future. "Then" was my soul-sucking verdict, condemning me to life with SPS and diabetes, no parole for good behavior. I suffered in mental solitary for a time, sorting it all out, trying to rediscover me.
"After" was coming to grips with my reality, choosing my path, and finding me. I chose to live positively, grab everything life had to offer within the limitations I had. I realized I never really lost me, just mechanical ability.
"Now," I have evolved in ways I would never have imagined, discovering lost or hidden aspects of me and creating new ones. I discovered a strength I did not know I had, with the occasional meltdown. Determination and imagination have given me insight to a meaningful life, and with that...
A promising future. I do not know what tomorrow may bring; but I embrace hope, push my limits, and am learning to fly, without wings.
“When you have come to the edge Of all light that you know And are about to drop off into the darkness Of the unknown, Faith is knowing One of two things will happen: There will be something solid to stand on or You will be taught to fly”
~Patrick Overton~
Copyright © 2008
Friday, October 31, 2008
Fright Life
I saw the young masqueraders toting their bags of goodies in small hunting parties driving home this evening. Nostalgic memories of dressing up, pretending, haunted houses, and candy made me smile.
Teen years evolved into the fun of sneaking in the dark to toilet paper a friend's house or prank a teacher. The chills and screams of scary movies was a convenient snuggling excuse while on a date.
Now, I have a neurological condition, Stiff Person Syndrome, (SPS), which can render me rigid, in spasms, or trigger stimulus-induced falls. I live the disabled reality of fear, illness-induced pranks, my world a perpetual spook house. Daily, I try to wear a costume of normalcy, the disabled "N" word.
One of my personality quirks-turned-to-coping-mechanisms is a sense of humor. I created the following Halloween greeting for my fellow stiffs, goofing on our zombiness. I hope you enjoy.
Halloween Greeting (SPS Style)
A ghoulfiend in our paranormal netherworld,
Debbie
Copyright © 2008
Teen years evolved into the fun of sneaking in the dark to toilet paper a friend's house or prank a teacher. The chills and screams of scary movies was a convenient snuggling excuse while on a date.
Now, I have a neurological condition, Stiff Person Syndrome, (SPS), which can render me rigid, in spasms, or trigger stimulus-induced falls. I live the disabled reality of fear, illness-induced pranks, my world a perpetual spook house. Daily, I try to wear a costume of normalcy, the disabled "N" word.
One of my personality quirks-turned-to-coping-mechanisms is a sense of humor. I created the following Halloween greeting for my fellow stiffs, goofing on our zombiness. I hope you enjoy.
Halloween Greeting (SPS Style)
A ghoulfiend in our paranormal netherworld,
Debbie
Copyright © 2008
Waders Or Life-Preserver
"Just remember, if the world didn't suck, we'd all fall off."
~Author Unknown~
Living with multiple chronic conditions is very much like juggling a bowling ball, flaming baton, and a butcher's knife...while doing circles on a unicycle...keeping a vigilant eye on my street corner hat for a stealthy theft attempt of some artful dodger for my hard-earned change.
My days are in constant flux, except for my personalized morning jump-start of Survival 101: blood sugar check, insulin adjustment, and SPS meds. I wait for my pharmaceutical marvels to tame the chronic beasts within. When all is under a semblance of order, I take my one-man circus on the road, touring various specialists and lab facilities.
During my recent tours, I discover my CNS medications and diabetes have created a new complication, dry mouth and an infected back tooth with bone loss. The infection creates problems for my sugar control and the bone loss requires an extraction and repair. The extraction will be complicated because of my diabetes, SPS, and medications. I feel like a dog chasing my own tail and continually biting myself in the butt...viciously hard.
There is always more: working in an eye exam, a pap test, a suspicious mole on my stomach, and a required day of diabetic school. (This carb-counting refresher course is several hours long with a lunch break.) I am hoping my future appearances are one-time-only performances.
Mentally, I keep hearing the repeated refrains from Pink Floyd's, "The Wall."
All in all it was just a brick in the wall.
All in all it was all just bricks in the wall.
I have moments I become overwhelmed, like yesterday. I strive to live a normal life in the morass of disabling health. Despair is a recurring battle I fight. I wear waders of hope; determination keeping me walking just ankle deep in the quagmire of defeat and depression sucking daily at my feet. I have occasional weak moments, counting the bricks in the wall instead of looking over it. I start to sink in the inky black ooze. I need a life preserver. I find it in quiet thought, acceptance with a strategy, and prayer.
My spirit tires, just like my compromised body. These moods usually pass in a day. The morning sun of a new day renews me.
"Resolve is never stronger than in the morning after the night it was never weaker."
~From the movie Naked~
Copyright © 2008
~Author Unknown~
Living with multiple chronic conditions is very much like juggling a bowling ball, flaming baton, and a butcher's knife...while doing circles on a unicycle...keeping a vigilant eye on my street corner hat for a stealthy theft attempt of some artful dodger for my hard-earned change.
My days are in constant flux, except for my personalized morning jump-start of Survival 101: blood sugar check, insulin adjustment, and SPS meds. I wait for my pharmaceutical marvels to tame the chronic beasts within. When all is under a semblance of order, I take my one-man circus on the road, touring various specialists and lab facilities.
During my recent tours, I discover my CNS medications and diabetes have created a new complication, dry mouth and an infected back tooth with bone loss. The infection creates problems for my sugar control and the bone loss requires an extraction and repair. The extraction will be complicated because of my diabetes, SPS, and medications. I feel like a dog chasing my own tail and continually biting myself in the butt...viciously hard.
There is always more: working in an eye exam, a pap test, a suspicious mole on my stomach, and a required day of diabetic school. (This carb-counting refresher course is several hours long with a lunch break.) I am hoping my future appearances are one-time-only performances.
Mentally, I keep hearing the repeated refrains from Pink Floyd's, "The Wall."
All in all it was just a brick in the wall.
All in all it was all just bricks in the wall.
I have moments I become overwhelmed, like yesterday. I strive to live a normal life in the morass of disabling health. Despair is a recurring battle I fight. I wear waders of hope; determination keeping me walking just ankle deep in the quagmire of defeat and depression sucking daily at my feet. I have occasional weak moments, counting the bricks in the wall instead of looking over it. I start to sink in the inky black ooze. I need a life preserver. I find it in quiet thought, acceptance with a strategy, and prayer.
My spirit tires, just like my compromised body. These moods usually pass in a day. The morning sun of a new day renews me.
"Resolve is never stronger than in the morning after the night it was never weaker."
~From the movie Naked~
Copyright © 2008
Sunday, October 5, 2008
Pajama Therapy
Then there are days...
I woke one morning last week and just knew...a "bad" day. Some bad days are sub par doable, while others are a category 5 and evacuation isn't an option. This was a sub par day, mildly out of sorts, achy, and tired.
Confirmation came with an episode of SPS-lock down spasm in the hallway, precariously holding a hot coffee cup with a frenzied circuit of thought racing in my head, "Do I ditch the java on the hallway carpet or try to salvage it along with staying upright?" Tactical maneuver..."Hello, General Patreous?"
Muscles quivering, I get to the computer, shaken, sore, but unscathed. Sitting, I assess my situation. Stiff Person is agitated today; I am emotionally tired; and physically, I am not up to the struggle. A lazy day in PJs is in order.
The day passes with peaceful uneventfulness. Evening was a quiet celebration with a large bowl of buttered popcorn, Coke on ice, and watching a DVD.
Calm, relaxed, and content...catharsis of my day of pampered solitude.
"True silence is the rest of the mind, and is to the spirit what sleep is to the body, nourishment and refreshment." ~William Penn~
Copyright © 2008
I woke one morning last week and just knew...a "bad" day. Some bad days are sub par doable, while others are a category 5 and evacuation isn't an option. This was a sub par day, mildly out of sorts, achy, and tired.
Confirmation came with an episode of SPS-lock down spasm in the hallway, precariously holding a hot coffee cup with a frenzied circuit of thought racing in my head, "Do I ditch the java on the hallway carpet or try to salvage it along with staying upright?" Tactical maneuver..."Hello, General Patreous?"
Muscles quivering, I get to the computer, shaken, sore, but unscathed. Sitting, I assess my situation. Stiff Person is agitated today; I am emotionally tired; and physically, I am not up to the struggle. A lazy day in PJs is in order.
The day passes with peaceful uneventfulness. Evening was a quiet celebration with a large bowl of buttered popcorn, Coke on ice, and watching a DVD.
Calm, relaxed, and content...catharsis of my day of pampered solitude.
"True silence is the rest of the mind, and is to the spirit what sleep is to the body, nourishment and refreshment." ~William Penn~
Copyright © 2008
Monday, September 29, 2008
Sleeping Booty
Last night I lay in the darkness, longing for the sweet oblivion of sleep...a temporary reprieve from the reality of pain and discomfort...maybe the bonus of a romantic dream with a sexy hunk.
After two hours of chasing thoughts: yesterday's regrets, today's worries, tomorrow's to-dos; I finally shuffled down the hall for a 2:30 am blood-check. I clock in at a conscious and lucid 45. Nibbling a miniature Hershey bar and sipping a 15-carb apple juice, the fluorescent kitchen glare revives my tired eyes for round two of insomnia with fatigue-enhanced pain. After three hours of restless sleep, I drag my tired butt out of bed.
Having more than one chronic condition, along with medication/treatment side effects, creates a tangled mess of symptoms. Trying to determine exactly what causes what symptom is more difficult than detangling a box of miniature Christmas lights wearing mittens and a blindfold. I live in a fog of fatigue.
In my last entry, I mentioned a day of (literally-$$$) double-billing physician appointments. I had a performance with a periodontist in the morning. After my mid-morning/lunchtime break, I had an afternoon appearance request by a pulmonologist following my sleep study audition.
Donning my "jammies" for my sleep study, the sleep tech hooked various electrodes to my head and legs. An oxygen monitor was clipped to my index finger, a glowing red ET prop..."Ouch." In hi-tech fashion, I was spied on and cyber-analyzed during a fitful night of zzz's. The pulmonolgist reviewed my results to discuss possible problems with me.
The diagnostic verdict: I sleep like crap, no singular reason outside of Stiff Person pain or nocturnal sugar plummets. With the promise of each new day, I drag my sleep-deprived derriere out of bed.
"Not being able to sleep is terrible. You have the misery of having partied all night... without the satisfaction."
~Lynn Johnston~
Copyright © 2008
After two hours of chasing thoughts: yesterday's regrets, today's worries, tomorrow's to-dos; I finally shuffled down the hall for a 2:30 am blood-check. I clock in at a conscious and lucid 45. Nibbling a miniature Hershey bar and sipping a 15-carb apple juice, the fluorescent kitchen glare revives my tired eyes for round two of insomnia with fatigue-enhanced pain. After three hours of restless sleep, I drag my tired butt out of bed.
Having more than one chronic condition, along with medication/treatment side effects, creates a tangled mess of symptoms. Trying to determine exactly what causes what symptom is more difficult than detangling a box of miniature Christmas lights wearing mittens and a blindfold. I live in a fog of fatigue.
In my last entry, I mentioned a day of (literally-$$$) double-billing physician appointments. I had a performance with a periodontist in the morning. After my mid-morning/lunchtime break, I had an afternoon appearance request by a pulmonologist following my sleep study audition.
Donning my "jammies" for my sleep study, the sleep tech hooked various electrodes to my head and legs. An oxygen monitor was clipped to my index finger, a glowing red ET prop..."Ouch." In hi-tech fashion, I was spied on and cyber-analyzed during a fitful night of zzz's. The pulmonolgist reviewed my results to discuss possible problems with me.
The diagnostic verdict: I sleep like crap, no singular reason outside of Stiff Person pain or nocturnal sugar plummets. With the promise of each new day, I drag my sleep-deprived derriere out of bed.
"Not being able to sleep is terrible. You have the misery of having partied all night... without the satisfaction."
~Lynn Johnston~
Copyright © 2008
Saturday, September 27, 2008
Tooth Or Wear
Many yesterdays ago...I remember losing a tooth was a nifty quarter profit, a dream visit to the penny candy counter, and the giddy thrill of my younger brother's envy.
The present. I finally worked in a morning appointment with a periodontist, slotted my afternoon with a pulmonologist. (another entry?) It seems my medical conditions, Stiff Person Syndrome and insulin-dependent diabetes, or their temporary remedies, can create additional "conditions." I now have dry mouth and bone loss extreme in my lower right, back-crowned molar...DOA.
After the familiar psych-taught intro, "Let's talk and get acquainted." (Subliminal meaning: "put the patient at ease.") We talked autoimmune disease and immunosuppressents, a lively icebreaker. He has mild vitilago on his hands.
He proceeded to poke my gums with the tools of his trade, verbally scoring the depth of gum tissue surrounding each tooth with the expertise of an Olympic judge. The only gold, my infected crown.
Pain. How do I process "ordinary" pain, judge severity, or choose a scale rating when I live with chronic pain every day? I quietly sat through his exam, not feeling anything warranting an "Ouch!" Finally, with incredulous respect, he waved his sharp, gum-probing hook in front of my eyes and said, "Don't you feel that?"
Well, I did, but the discomfort of the oral exam was not a blip on my pain radar. Maybe I should have faked a groan for his benefit. The only pain I did feel was the cost factor of the proposed yank and restore.
Factor in inflation, maybe a gold crown under my pillow...
“Many of us are at the "metallic" age - Gold in our teeth, silver in our hair - and lead in our pants” ~Unknown~
Copyright © 2008
The present. I finally worked in a morning appointment with a periodontist, slotted my afternoon with a pulmonologist. (another entry?) It seems my medical conditions, Stiff Person Syndrome and insulin-dependent diabetes, or their temporary remedies, can create additional "conditions." I now have dry mouth and bone loss extreme in my lower right, back-crowned molar...DOA.
After the familiar psych-taught intro, "Let's talk and get acquainted." (Subliminal meaning: "put the patient at ease.") We talked autoimmune disease and immunosuppressents, a lively icebreaker. He has mild vitilago on his hands.
He proceeded to poke my gums with the tools of his trade, verbally scoring the depth of gum tissue surrounding each tooth with the expertise of an Olympic judge. The only gold, my infected crown.
Pain. How do I process "ordinary" pain, judge severity, or choose a scale rating when I live with chronic pain every day? I quietly sat through his exam, not feeling anything warranting an "Ouch!" Finally, with incredulous respect, he waved his sharp, gum-probing hook in front of my eyes and said, "Don't you feel that?"
Well, I did, but the discomfort of the oral exam was not a blip on my pain radar. Maybe I should have faked a groan for his benefit. The only pain I did feel was the cost factor of the proposed yank and restore.
Factor in inflation, maybe a gold crown under my pillow...
“Many of us are at the "metallic" age - Gold in our teeth, silver in our hair - and lead in our pants” ~Unknown~
Copyright © 2008
Monday, September 8, 2008
Victory At The Thigh High
Determination, creativity, improvisation...All diverse descriptions of my living with chronic illness. Stiff Person Syndrome greatly hinders my flexibility and movement. Lack of mobility is extremely challenging when dealing with ground zero...my feet.
Dressing myself, especially for church, is reminiscent of acquired skills learned at Romper Room level. Today, we will put on pantyhose, if lucky? Several minutes later, spasms, with sweat trickling down my back, may yield a touchdown for team Hanes. An SPS friend suggested thigh highs. Hmm!
I bought some last week, black and beige, a nice diversion from back and blue syndrome injury. (Invisible Illness?) ;-) Choosing my black "Jackie O" dress for church, I opted for my black thigh highs.
The left stocking went on easily, SPS-speaking. I had some trouble with the right one, but I beat my 10-minute record for regular panyhose. The crowd (me) went wild...touchdown at Thigh High Staduim!!
An added bonus, thigh highs have a naughty lace elastic band to hold them up...deliciously feminine. The band was also a new hide-away perch for my insulin pump.
"I long to accomplish a great and noble task, but it is my chief duty to accomplish small tasks as if they were great and noble."
~Helen Keller~
Copyright © 2008
Dressing myself, especially for church, is reminiscent of acquired skills learned at Romper Room level. Today, we will put on pantyhose, if lucky? Several minutes later, spasms, with sweat trickling down my back, may yield a touchdown for team Hanes. An SPS friend suggested thigh highs. Hmm!
I bought some last week, black and beige, a nice diversion from back and blue syndrome injury. (Invisible Illness?) ;-) Choosing my black "Jackie O" dress for church, I opted for my black thigh highs.
The left stocking went on easily, SPS-speaking. I had some trouble with the right one, but I beat my 10-minute record for regular panyhose. The crowd (me) went wild...touchdown at Thigh High Staduim!!
An added bonus, thigh highs have a naughty lace elastic band to hold them up...deliciously feminine. The band was also a new hide-away perch for my insulin pump.
"I long to accomplish a great and noble task, but it is my chief duty to accomplish small tasks as if they were great and noble."
~Helen Keller~
Copyright © 2008
My Own Enemy
Victimology-Chronic Victim Investigation, CVI.
It would be great to resolve the CVI drama in an hour-television show interrupted with toothpaste and Geico commercials. Chronic Victim Investigation is reality...no actors, commercial breaks, or season hiatus.
Chronic investigation is my personal introspection and resolution of living with SPS and diabetes. Yesterday I wrote about chronic blues. For me, chronic blues is a temporary condition, healing bereavement. If I allowed myself to wallow in self-pity, chronic hopelessness would settle in...victimology...my own self-defeating enemy, "poor me."
While I cannot control fate, I can control my attitude...victor or victim. I view a victor as one who faces challenge, and when knocked to the ground will painstakingly rise, spitting dust and blood for another round. Victory is to keep trying..."in spite of."
"Self-pity is easily the most destructive of the nonpharmaceutical narcotics; it is addictive, gives momentary pleasure and separates the victim from reality."
~John W. Gardner~
"Although the world is full of suffering, it is also full of the overcoming of it."
~Helen Keller~
Copyright © 2008
It would be great to resolve the CVI drama in an hour-television show interrupted with toothpaste and Geico commercials. Chronic Victim Investigation is reality...no actors, commercial breaks, or season hiatus.
Chronic investigation is my personal introspection and resolution of living with SPS and diabetes. Yesterday I wrote about chronic blues. For me, chronic blues is a temporary condition, healing bereavement. If I allowed myself to wallow in self-pity, chronic hopelessness would settle in...victimology...my own self-defeating enemy, "poor me."
While I cannot control fate, I can control my attitude...victor or victim. I view a victor as one who faces challenge, and when knocked to the ground will painstakingly rise, spitting dust and blood for another round. Victory is to keep trying..."in spite of."
"Self-pity is easily the most destructive of the nonpharmaceutical narcotics; it is addictive, gives momentary pleasure and separates the victim from reality."
~John W. Gardner~
"Although the world is full of suffering, it is also full of the overcoming of it."
~Helen Keller~
Copyright © 2008
Sunday, September 7, 2008
CIA Blues
I am a rock,
I am an Island.
And a rock feels no pain;
And an island never cries.
~Simon & Garfunkel~
Chronic Illness Attitude Blues. Yep, I get them, temporarily consumed in a melody of woe while soulfully lip-syncing with gritty emotion...usually at an occasional pity-party for only me, impromptu and private.
A common misconception...expectation (?) of coping for an individual facing/dealing/living with a crisis will be "buck-up," with a smile and fortitude, head on. I can candidly say, "Faith, humor, flexibility, and prayer have been my mainstays in coping with my chronic ails."
I can also say, "Coping is a new challenge every single day. It is not a destination, but an endless journey."
As with all long and difficult journeys, a traveler will become weary. Daily living within a limited body, frenzied merry-go-round of medical appointments, and centering my activities around medication timing and peak performance are not only physically-draining, but emotionally depleting. I have moments or days when my personal expense of thought and energy is overwhelming. I crumble under the burden.
Pain woke me in the wee hours of Thursday. Darkness surrounded me in comforting silence and appropriate gloom. Laying still on my back, I counted the areas of pain in my body, giving a severity score to each one. Thinking about my hectic medical schedule and trying to fit the normalcy of life into "eye of the storm," I grieved.
I grieved over the loss of what I was, what I am, fear of what I may become. It can be cathartic for me to acknowledge my grim realities, as long as I do not allow myself to get sucked into a vortex of hopelessness. Sometimes my bravery becomes bravado and I need to privately nurture my pain.
In those quiet hours, I (obviously);-) thought about my physical pain, my emotional pain, and future uncertainties. Sometimes the pain of living with chronic illness is too deep for tears, just a heavy, consuming darkness in my soul. Feeling alone, I mourned, thought, and prayed.
Then came the morning, a new day, a fresh start. ;-)
"The Lord is my light and my salvation; whom shall I fear? the Lord is the strength of my life; of whom shall I be afraid?" Psalm 27:1
Copyright © 2008
I am an Island.
And a rock feels no pain;
And an island never cries.
~Simon & Garfunkel~
Chronic Illness Attitude Blues. Yep, I get them, temporarily consumed in a melody of woe while soulfully lip-syncing with gritty emotion...usually at an occasional pity-party for only me, impromptu and private.
A common misconception...expectation (?) of coping for an individual facing/dealing/living with a crisis will be "buck-up," with a smile and fortitude, head on. I can candidly say, "Faith, humor, flexibility, and prayer have been my mainstays in coping with my chronic ails."
I can also say, "Coping is a new challenge every single day. It is not a destination, but an endless journey."
As with all long and difficult journeys, a traveler will become weary. Daily living within a limited body, frenzied merry-go-round of medical appointments, and centering my activities around medication timing and peak performance are not only physically-draining, but emotionally depleting. I have moments or days when my personal expense of thought and energy is overwhelming. I crumble under the burden.
Pain woke me in the wee hours of Thursday. Darkness surrounded me in comforting silence and appropriate gloom. Laying still on my back, I counted the areas of pain in my body, giving a severity score to each one. Thinking about my hectic medical schedule and trying to fit the normalcy of life into "eye of the storm," I grieved.
I grieved over the loss of what I was, what I am, fear of what I may become. It can be cathartic for me to acknowledge my grim realities, as long as I do not allow myself to get sucked into a vortex of hopelessness. Sometimes my bravery becomes bravado and I need to privately nurture my pain.
In those quiet hours, I (obviously);-) thought about my physical pain, my emotional pain, and future uncertainties. Sometimes the pain of living with chronic illness is too deep for tears, just a heavy, consuming darkness in my soul. Feeling alone, I mourned, thought, and prayed.
Then came the morning, a new day, a fresh start. ;-)
"The Lord is my light and my salvation; whom shall I fear? the Lord is the strength of my life; of whom shall I be afraid?" Psalm 27:1
Copyright © 2008
Wednesday, September 3, 2008
Pinned
I have two "invisible" (hidden...indiscernible) disorders, diabetes and Stiff Person Syndrome. Disguised in presumed health, I have social anonymity from the stigma of disability. IDDM and SPS are lettered jocks on a champion chronic illness team and I am their girl. Going steady.
Dates are plentiful...to my staff of physicians, the infusion clinic, the pharmacy. In preparation of an impromptu ER gala, I know how to accessorize. I have purchased a serviceable stainless steel chain and pendant, personally engraved, tagging me from the healthy herd. I am officially pinned as a chronic sweetheart.
As much fashion thought went into the design of medic alert jewelry as Good Will throw-aways. I do have a choice, the ever-visible bracelet or the belly-button-length necklace I can wear under my clothes. The screaming red logo is consistent with serviceable. Pretty is not an option. One problem, my illnesses and the lengthy list of my medications, not to mention the 800 hotline, require a tablet size pendant.
What I would give for a delicate gold chain, simple diamond charm, and my information intricately written on the back with the artisan flair of a rice picture carver.
"Adversity is the diamond dust Heaven polishes its jewels with."
~Thomas Carlyle~
Copyright © 2008
Dates are plentiful...to my staff of physicians, the infusion clinic, the pharmacy. In preparation of an impromptu ER gala, I know how to accessorize. I have purchased a serviceable stainless steel chain and pendant, personally engraved, tagging me from the healthy herd. I am officially pinned as a chronic sweetheart.
As much fashion thought went into the design of medic alert jewelry as Good Will throw-aways. I do have a choice, the ever-visible bracelet or the belly-button-length necklace I can wear under my clothes. The screaming red logo is consistent with serviceable. Pretty is not an option. One problem, my illnesses and the lengthy list of my medications, not to mention the 800 hotline, require a tablet size pendant.
What I would give for a delicate gold chain, simple diamond charm, and my information intricately written on the back with the artisan flair of a rice picture carver.
"Adversity is the diamond dust Heaven polishes its jewels with."
~Thomas Carlyle~
Copyright © 2008
Tuesday, August 26, 2008
Lookin' Good at The Upchucky
I haven't figured out if it is pride, shame, or a combination of both; but I detest being viewed as weak, sick, needy...pitied. It is a double-edged sword to look normal and healthy when my body can be such a deceiver as to how I feel. Usually, I love the pretense of fitting in the "normal" crowd. Sometimes I feel so lousy, hurt, or have no gas left in the tank...not even a whiff of a fume. I just want someone to understand, empathize a little, without coddling.
A week ago, I took my Sunday afternoon nap, waking up feeling decent, and proud of my 125 sugar reading. I was fixing a snack before evening church and bolused for my intended carb intake. I started feeling nauseous, creating an urgent sense of panic for me. Loose insulin stampeding in my system and unarmed with my evening Stiff Person medication...a double whammy of possible 911 scenarios...starring me, looking good.
I tried drinking a small amount of orange juice to head the renegade insulin off at the pass. My blood sugar was starting a dangerous decline. My body ambushed me. Nausea won. I collided at the pass with an upchucky wagon. After the collision, I started to feel better; so I sipped on a regular cola and had some crackers. I was dipping into the 50's by then. Five o'clock and an hour until church.
My meds were staying down and the crackers were not in imminent projectile mode. I sucked on some hard candy while I got ready for church. My make-up survived the ordeal, so why not? I know most would question, "Why go?"
It is simple. I always hurt or feel sub par; it varies in degrees. If I allowed tolerable (key word) discomfort to deter me, I would never do anything. I had bottomed in the 40's by the time I got to church, but I was looking well. My facade of rosy health, complete with brilliant smile, was chronic hypocrisy, especially in church. Crunching on some more hard candy, I started curving upwards in the 50 range when church was over.
Church always makes me feel good. My bout at the Not OK corral had subsided and I managed to eat a small meal. After this duel, I felt drained, but victorious. There is something special, empowering for me, in overcoming minor setbacks, while lookin' good.
"He had a marvelous sense of the absurd. He could see right through pretense and cut right to the heart of the hypocrisy of the human condition. He was a gem."
~Mike Parker~
Copyright © 2008
A week ago, I took my Sunday afternoon nap, waking up feeling decent, and proud of my 125 sugar reading. I was fixing a snack before evening church and bolused for my intended carb intake. I started feeling nauseous, creating an urgent sense of panic for me. Loose insulin stampeding in my system and unarmed with my evening Stiff Person medication...a double whammy of possible 911 scenarios...starring me, looking good.
I tried drinking a small amount of orange juice to head the renegade insulin off at the pass. My blood sugar was starting a dangerous decline. My body ambushed me. Nausea won. I collided at the pass with an upchucky wagon. After the collision, I started to feel better; so I sipped on a regular cola and had some crackers. I was dipping into the 50's by then. Five o'clock and an hour until church.
My meds were staying down and the crackers were not in imminent projectile mode. I sucked on some hard candy while I got ready for church. My make-up survived the ordeal, so why not? I know most would question, "Why go?"
It is simple. I always hurt or feel sub par; it varies in degrees. If I allowed tolerable (key word) discomfort to deter me, I would never do anything. I had bottomed in the 40's by the time I got to church, but I was looking well. My facade of rosy health, complete with brilliant smile, was chronic hypocrisy, especially in church. Crunching on some more hard candy, I started curving upwards in the 50 range when church was over.
Church always makes me feel good. My bout at the Not OK corral had subsided and I managed to eat a small meal. After this duel, I felt drained, but victorious. There is something special, empowering for me, in overcoming minor setbacks, while lookin' good.
"He had a marvelous sense of the absurd. He could see right through pretense and cut right to the heart of the hypocrisy of the human condition. He was a gem."
~Mike Parker~
Copyright © 2008
Monday, August 25, 2008
The Family
Some members are known as MS; others, diabetes. There are clans with rheumatoid arthritis, lupus, or myasthenia gravis. Impressive names, tongue twisters, spelling bee stumpers, or pretty words on paper..."A rose by any other name is still a rose." Or thorn? Whatever the diagnostic name, welcome to the inbred Mafia Family of Invisible Chronic Illness, natural crimes against healthy humanity.
The various cousins, siblings, and spouses of this large dysfunctional family share similar traits: pain, invisible disability, financial strain, social misunderstanding, and interrupted lives...to name just a few.
Some inherit chronic status genetically. Others are adopted in perverse random. In a single slow-motion, dare-to-breathe moment, the neuro's words, "I believe you have Stiffman Syndrome," forever changed my world. Reality rasped in a throaty Gotti, "gotcha," "Once you are in the family, Debbie, there is no way out," as I looked at the written SPS diagnosis on my confirmed chronic adoption. Diabetes is my underboss.
As a member of the Invisible Chronic Illness Family, I am still hoping for Elliot Ness, a cure...untouchable. For now, I deal in drugs...temporary medication deflection (if lucky) for whatever ails my SPS branch of the chronic illness family tree.
I bury my roots deep. I work on nourishing my spirit in the wellsprings of hope, determination, humor, and faith. Daily, I redefine my physical limits, always reaching. I fight back, a rebel with causes. Some of my causes: to always try, achievement is in the effort; to not let my illnesses be my identity; reaching out, giving enriches my life; to dream, laugh, love, and create my own happiness. I pray...a lot. ;-)
Even though I am rebellious, "the family" refuses to disown me. I still look onward and live forward..."in spite of."
"I have built my organization upon fear." ~Al Capone~
"Courage is one step ahead of fear." ~Coleman Young~
I think it is important to be involved in invisible illness awareness week. Millions are affected by an invisible illness. Living within physical limitations and the emotional expense required is not only consuming, but overwhelming at times. Not "looking sick" adds to frustration and misunderstanding not just for the "afflicted," but also for the "affected."
Copyright © 2008
The various cousins, siblings, and spouses of this large dysfunctional family share similar traits: pain, invisible disability, financial strain, social misunderstanding, and interrupted lives...to name just a few.
Some inherit chronic status genetically. Others are adopted in perverse random. In a single slow-motion, dare-to-breathe moment, the neuro's words, "I believe you have Stiffman Syndrome," forever changed my world. Reality rasped in a throaty Gotti, "gotcha," "Once you are in the family, Debbie, there is no way out," as I looked at the written SPS diagnosis on my confirmed chronic adoption. Diabetes is my underboss.
As a member of the Invisible Chronic Illness Family, I am still hoping for Elliot Ness, a cure...untouchable. For now, I deal in drugs...temporary medication deflection (if lucky) for whatever ails my SPS branch of the chronic illness family tree.
I bury my roots deep. I work on nourishing my spirit in the wellsprings of hope, determination, humor, and faith. Daily, I redefine my physical limits, always reaching. I fight back, a rebel with causes. Some of my causes: to always try, achievement is in the effort; to not let my illnesses be my identity; reaching out, giving enriches my life; to dream, laugh, love, and create my own happiness. I pray...a lot. ;-)
Even though I am rebellious, "the family" refuses to disown me. I still look onward and live forward..."in spite of."
"I have built my organization upon fear." ~Al Capone~
"Courage is one step ahead of fear." ~Coleman Young~
I think it is important to be involved in invisible illness awareness week. Millions are affected by an invisible illness. Living within physical limitations and the emotional expense required is not only consuming, but overwhelming at times. Not "looking sick" adds to frustration and misunderstanding not just for the "afflicted," but also for the "affected."
Copyright © 2008
The Impossible Dream
Man in the Arena
"It is not the critic who counts: not the man who points out how the strong man stumbles or where the doer of deeds could have done better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood, who strives valiantly, who errs and comes up short again and again, because there is no effort without error or shortcoming, but who knows the great enthusiasms, the great devotions, who spends himself for a worthy cause; who, at the best, knows, in the end, the triumph of high achievement, and who, at the worst, if he fails, at least he fails while daring greatly, so that his place shall never be with those cold and timid souls who knew neither victory nor defeat."
Theodore Roosevelt
"Citizenship in a Republic,"
Speech at the Sorbonne, Paris, April 23, 1910
George Foreman, at the age of 45, defeated heavyweight champion Michael Moorer "against the odds."
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