SYNDROME MOMENTS 2005

December 31, 2005

A major computer crash has alerted me to losing a few of my year-end entries.  My last entry - October 27, 2005, leads one to think I had slipped drastically into a very deteriorated state by my prolonged silence.  For anyone who follows these entries, I apologize for any concerns this may have given you in regard to syndrome progression.  A note about progression, not much is known about it.  SPS progression is part of the longitudinal study of which I am a participant at NIH. (National Institutes of Health.)  

I am experiencing more frequent break-through symptoms, but I am optimistic the future will relinquish some lost ground with some changes in my busy schedule, medication tweaking, improved weather conditions, and other assorted coping tricks from my magic syndrome hat.

Christmas is always a very special time for me...the religious significance of celebrating the birth of Christ, family time, increased social benevolence, and the general spirit of the season.  The anticipation and excitement act as catalysts for my symptoms...increased rigidity, spasms, and fatigue.  As become the norm, I have to reign in racing ambitious thoughts with realistic snail pace comfort.

My Christmas was a treasured time, spent with my family.  In spite of all the frenzy, everything came together in a perfect blend of "finished on time," lots of "yummies" to munch, in a relaxing holiday afterglow.

I am looking forward to the New Year.  Any beginning is always filled with endless possibilities....

Happy New Year.

October 27, 2005

Wow!  The days of summer have abruptly swept away like the dried leaves of lingering Fall currently scuttling across my lawn.  Time has gotten away from me.  I have noticed a regression in my condition during the last year.  It could be several factors: age, a more demanding schedule at home, (I do not do hurry and hectic well.), or stress from continual and ongoing insurance haggles,  A socially-active teenager does not allow for predictable or serene, but she sure makes life fun.  It may be a drop in the rung of Stiffman progression or just a temporary setback.  

I am optimistic as I realize I have options.☺  Last month, my IVIg infusions have been moved up to once every four weeks instead of five.  A couple of minor medication adjustments have been made.  Being a woman, I have adjustment advantage.  Female vanity has taught me to to subtlety tweak make-up, hair, and clothing as I age.  (Some ladies in the mall egregiously discredit this philosophy.)  I have learned to "go with the flow."  

My regression is manifesting itself in more recurrent episodes of rigidity and increased myoclonic spasms.  La Nina, the drought, was very good for my weather-sensitive trigger.  The resurfacing of seasonal change, thunderstorms, cold damp rain, cause heightened and more frequent symptom eruptions.  I need a job at the Weather Channel.  I may not know exactly what is going to happen, but my body is always 100% correct in predicting a change.   

Recently, I have been guilty of ignoring balance in my life, divesting too much time and energy into the syndrome.  I care deeply about others who walk this path with me, but I am not good for them or myself if I do not focus on inner balance.  I need to take some time to nurture my spirit, chase the dreams I conveniently shelve, and look outward/upward more often.

I have felt a tug of nostalgia.  I have been thinking and wondering about special people from my past.  I have taken the initiative to connect with a few.  It has been an awakening for me on many levels: heartache, sharing, laughter, joy, sorrow, the continual drumbeat of life.  Time and distance cannot sever some bonds.

It is apt Halloween is almost here.  I may go as zombie, a living stiff.  I've got SMS natural moves to choreograph to The Monster Mash. ☺

July 29, 2005

One aspect of traveling with Stiffman/Stiff Person Syndrome is packing.  Not only do I pack for the woman I am, I pack for my conjoined disorder.  He has a bag of his own, filled with medications, insulin, syringes, insulin pump supplies, manuals to trouble-shoot my glucometer and insulin pump, a pill cutter, and Aleve.  This appropriately black bag gives the appearance of an illegal drug run to or from Columbia.  All that is missing are the "too many to count" Benjamin Franklins and a loaded Magnum 747.

I hesitate and often neglect (with the exception of my web journal) to share with the outside world my use of diazepam/valium for SMS/SPS.  There is a social stigma in taking diazepam or any benzodiazepine.  I am sure the mention of the drug would conjure up pictures of a lethargic, disheveled Debbie, zombied in front of the television (Jerry Springer), unable to cope with a bologna sandwich supper or worse...a wild-eyed, knife-wielding female "Norma Bates" of Psycho infamy, interacting with a taxidermist version of some dead family member rocking beside a slashed and bloodied shower curtain.  Drug abuse has prostituted the legitimate use of narcotic medication, much to my admitted shame and aggravation.  Stiffman Syndrome and valium use make an interesting combo to explain?!

When I travel, I carry a three-day supply of medication in my purse and the rest in my life-support bag.  I never leave my medications in the hotel room.  The bag goes in the car trunk to be safely locked and with us wherever we may be.

While in Ohio, we went to a cook-out.  I have a couple of family members that have abused drugs.  I laid my purse in the family room between the recliner and wall.  I make sure I take my medication privately to avoid unnecessary speculation or incorrect assumptions.  (One less thing to explain!)   I casually took my last dosage of medication for the day out of my purse and went into the kitchen to take it.  Evidently, someone noticed.  

The next morning, I was preparing to take my morning medication.  Luckily, I had not refilled the vial with a three-day supply the day before.  I had only a day's worth of medication along with extra diazepam in case of a severe spasmodic episode in my purse vial.  All of the diazepam except for two dosages were missing.  The baclofen and gabitril were untouched.  I felt horribly violated.  My family knows I have a serious neurological disorder even if they do not understand it.  Obviously, a desire for medicinal recreation overrode any consideration that I may actually need my medication.  I was equally troubled by the misunderstanding between "use" and "abuse," giving someone perceived permission, justification, because "Debbie takes valium."

Outside of feeling violated and angry, I felt sadness for one who has such a misguided and destructive hunger to stoop to such levels to feed it.

June 19, 2005

Life is filled with daily lessons and blessings...if I am open to seeing them.

Last week, my husband was going to help me clean house.  I do the choreography, light duties, and delegate the SMS challenging chores to my partner.  I never fully understand the why, but a good start to my day evolved into heightened SMS activity with the timing of our tag-teaming the gruesome dust-bunnies.  A few restful time-outs and the allowed extra prescribed diazepam for difficult moments resulted in a victory over the dust-bunnies and some residual increased mobility.  A bonus.  I wanted to seize the moment for a sunset stroll with my personal "Mr. Clean."☺

We had some delightful and insightful encounters with a few members of the geriatric set.  Our neighbor complimented my husband on his "pretty woman."  With pride, he told us he was 88-years-old and married for 67 years.  He glowingly praised his life and his wife.  With slow deliberate steps (I can relate.), we watched as he shuffled to his garage to get his clippers.  An avid gardener, he clipped a single, perfect red rose for me.  His pleasure in his hobby and gift touched me.

Rounding the block, we made a trio of new acquaintances: an English teacher in early stages of Alzheimer's and a married couple walking their dog.  They were proud of their 61 years of marriage.   They possessed lively personas.  The husband chooses to work five hours daily in a bakery.  His wife told me he only takes one medication a day.  I kept my illness a secret.  I envied his one medication a day.

The English teacher wanted us to meet her husband.  He was amazing.  He carves birds out of wood and paints them.  The delicate intricacy of his work is a realistic mimic of nature.  You expect to feel the softness of feathers from each wooden sculpture.

Having Stiffman Syndrome, everything seems to have a relevance to my situation for me.  I thought about these five individuals, their common outlook.  Knowing they were in the fourth quarter of life, their focus was not on the scoreboard or the end of the game, but playing.  Hindered movement and the evolution of years had each person embracing the simple, reaching for doable goals, exploring new interests, and not yielding to surrender.  Hindered movement, the evolution of chronic illness, and conforming life perspectives - we share a bond.  I hope my life emulates.☺

May 26, 2005

With some progressive stiffness and increase in spasmodic episodes, I have not been as able to pursue some physical activities...like walking...with my usual slow-person gusto.  My husband decided to become my trainer for "Beginning Walking," a zero-credit course in mobility.  Professor Honey - and I am teacher's pet. ☺

Monday was day one of walking class and Stiffman Syndrome was especially unruly that day.  We tried to give him a "time-out," but he was not going to miss an opportunity like this.  Piggy-back riding me for the entire walk, an extra 5 mg. of diazepam did not placate his mischievous streak in the least.  Doing my Tim Conway shuffle, stopping for frequent breathing and stretch breaks, and laboriously walking with the continual tight drawing of my lower back muscles, I clung to my husband, kept my eyes on the ground to avoid SMS "open space" paranoia, and completed our walk with the physical vigor of a ninety-year-old woman in combat boots.  My emotional euphoria, however, was ecstatic.

Tuesday was much better.  My lower back was stiff (a given) and I had a tight hold on Professor Honey, but the walking lesson was much better.  The pay-off was the sweet fragrance of the Russian Olive blooms and an air-brushed sunset over the Monument's red rock cliffs.

Yesterday started out good (Intentions, with SMS, are always good.), but our walk was down a road in which a busy church was letting out.  SMS overload.  I averted my eyes from the heavy two-way traffic of twilight's passing car lights.  Crossing on an overhead-pass, I could hear, see, actually feel the approaching traffic, a semi-truck going underneath the pass, had visual awareness of limited roadside space, hard asphalt, the painted lines on the highway, and all of this jumbled into a joined audio cacophony and perceptional frenzy while my SMS hyper-sensitivity was distinctively aware of each individual onslaught.

After getting past the church and traffic, my body calmed and my spirit was rewarded with a deserved sense of accomplishment while my nose took in the delicate fragrance of Russian Olive blooms against the backdrop of another panoramic sunset.

I have a huge crush on my teacher/trainer.☺

May 24, 2005

We have a new addition to our family...Charlie, a fire-belly toad.  My daughter christened him.  I asked her how did she know Charlie wasn't a Charlene?  Nothing displayed gave me a gender clue.  Charlie is a variegated forest green with  shades of lime, circling to a fire-orange belly, the token of his name.

Charlie has a beautiful aquarium, filled with purple rocks, a pond-deco rock formation, and a faux frond of greenery to complete a simulated pond theme.  Life is easy.  Crickets are bought and given to him as appetite dictates.  It seems he has everything he could possibly desire.

I was watching Charlie.  With futility, he jumped, and jumped, and jumped, repeatedly hitting the restricting boundary of his glass enclosure.  Charlie may only be a toad, but I emotionally ached as I watched him.  Everything was given to him but his freedom, the challenge of independence, and companionship.  The aquarium walls were a duo sanctuary and prison.  That tiny toad symbolizes the physical restraints of Stiffman Syndrome for me.  Charlie is also a lesson in perseverance.  He refuses to give up.  Every day, he hops and he jumps against his imposed boundaries.

Charlie embodies an "against all odds" spirit for me.  We ran out of his tiny crickets and the local pet store did not have any in stock for a couple of days.  I went on a pet store sojourn to buy his sustenance, on my own.  He may only be a toad but... 

*****

"For a long time it had seemed to me that life was about to begin - real life.  But there was always some obstacle in the way, something to be gotten through first, some unfinished business, time still to be served, a debt to be paid.  Then life would begin.  At last it dawned on me that these obstacles were my life."  ~Alfred D. Souza~

May 16, 2005

Funny, how quickly time slips away.  Another month has gone by since I have written anything.  I have my SMS "moments" and days with this syndrome, but I wish to share a thought, an epiphany, if you will.

We enjoy watching television shows that pertain to various cultures.  With the current trend of body piercing, split tongues, tattoos, and sometimes distorted cosmetic surgery, third-world body enhancements, like a lip-disc, have lost their culture shock appeal.

This particular television program focused on a tribe living on an island.  Their life was simplistic.  They grew a garden, had some pigs, and fished for food.  Worms were a delicacy to be plucked and sucked from soaking logs in the river. Clothing was the expected minimal.  Small children played with abandon while chores were done at a personal pace, no time restraints.  There was no care for appearance.  A river swim, at a moment's whim, was a frequent indulgence.

Watching this tribe on television, I was stricken with envy.  We pride ourselves on our knowledge, technology, and feel superior to a labeled "third-world" civilization.  Every member of this tribe was relaxed and smiling.  They had a true sense of "community."  Everything was done to include everyone for the good of everyone; from tending crops, making boats, preparing meals, and the communal meal time.  Money was not an issue except to buy prized tobacco in which they all shared in an after-dinner smoke.

I turned to my husband and said, "You know, we think they are beneath us when it comes to lifestyle.  Do you realize a major catastrophe would not phase them as they are completely self-sufficient?  We are totally dependent for the food we eat, the gas in our car, and slaves to time.  A major catastrophe would render us clueless, helpless, and in a panic."  (Resembles an SMS moment.) ☺

Ironically, the next morning had us awaken to a power outage and scrambling through the house to find a clock not run by electricity to find out what time it was.  Remembering the television show from the previous night, I said to my husband, "Those island people would not be in this rush because the power went out."

Stiffman Syndrome has required me to closely examine life's priorities.  While I detest having an illness illuminate life's truths; I envy and admire a civilization that actually "gets it" without a rude awakening.  Life is about family, appreciation of the simple, enjoying God's bounty, and a sense of community.  Who are the "uncivilized?"

April 15, 2005

Death and taxes.  It doesn't matter because today was a great day after yesterday.  The SMS storm has calmed - until next time.  Stay tuned.

Recently, we had a vacuum cleaner salesman come to visit.  He had a state-of-the-art vacuum cleaner that I have dubbed "The Titanium Turbo Dirt Sucker 5000" to compliment the silver metallic paint job and justify the $2,000+ price tag.??  For that kind of money, I expect a remote control to operate the vacuum.  If it came with a remote, men would flock to buy it and use it.

He was an enthusiastic salesman.  He had filters with accumulated piles of lint, dust, and dirt from my presumably clean house with the Titanium 5000.  It is fair to mention I am a compulsive clean freak, so I should have been mortified.  I had seen the filter trick done with a different vacuum a few years ago.  Realistically, even if we had wanted this dust sucking marvel, we could not afford the price.

Letting this salesman down was difficult because I knew he felt we were a sure thing with the cleanliness of our home.  I shared with him that we could not pay such an exorbitant fee for a vacuum because I had serious medical bills.  I proceeded to explain Stiffman/Stiff Person Syndrome to him.  He asked me if that was why I hesitated in trying the Turbo 5000 when he asked me.  I told him, "Yes."  (Scrutiny phobia while attempting a physical feat, even for an audience of one.)

He proceeded to plead his case for the vacuum by calling our attention to the piles of stuff on the filters and asking if that bothered us.  I had to be honest with him.  I said, "There have been times when I have been unable to even use a vacuum.  When you are dealing with an illness like Stiffman Syndrome, dust on the lamp shades just isn't that big of a deal anymore."  An advantage of having a disorder like Stiffman/Stiff Person Syndrome, it gives you a much clearer perspective of life's priorities.☺

Though disappointed, he understood and gave me a hug as he left.  He wished me well.  His compassion was worth more than the lightweight, heavy-duty abilities of the Titanium Turbo Dirt Sucker 5000.

The next day, my husband and I used coffee filters with our $89.00 Hoover and vacuumed over the areas the Turbo Titanium was used.  With satisfaction, we had piles of lint, dust, and dirt on our coffee filters.  Hocus-pocus, we know the trick.  Now if we could figure out some magic for SMS.

April 14, 2005

I cannot believe it has been over a month since I have written anything.  It is hard juggling life, children, marriage, and Stiffman Syndrome.  I guess I need to catch up.  (In many ways.)☺

With SMS, I am extremely sensitive to weather changes.  It seems like the syndrome has painted a barometric target on my head.  Uh-oh, a weather change.  Zap me.☺  Our usual stable desert weather has been volatile this Spring; subjecting me to subconsciously cling to the railings of my sanity while my physical ship is brutally assailed by a seeming SMS hurricane.

Spring break was cool but resulted in a doable for me, and lucrative for my daughter, Las Vegas family shopping spree.  (Hubby was a bench-warmer.)  We combined the trip with a visit to a new neurologist in Utah.  I plan on keeping my hometown neurologist, but I hope seeing this doctor occasionally will add understanding to Stiffman Syndrome as he is involved in neurological research.  I also want to have a foot in the door of this hospital facility in the event my physical future would experience a drastic decline.  He has other SMS/SPS patients.  I feel a collective assortment of us will be hopefully enlightening for him and helpful to all of us with the syndrome.

I met two other ladies with SMS.  The meeting meant a lot to me.  They both were delightful, funny, intelligent, and "afflicted."  We had a lovely time.  We didn't just talk shop, SMS "show and tell."  We have lives, families, and other interests.  It is nice to get to know others behind the SMS label.  I have had the privilege to meet a few "stiff" people in past years.  All of my encounters have been uplifting and fulfilling.☺ 

Yesterday was a memorable day.  I had several SMS catalysts converging, similar to the movie, Perfect Storm with George Clooney:  hormones, stress of hurry, lengthy to do list, and weather?  I decided to hang out some clothes after I had taken my medication before I left to do some errands with Mom.

I had an SMS premonition as I stood at the patio door with my hand full of clothes on hangers.  My body gave the tell-tale warnings, but I thought I could overcome the situation.  Anxiously looking for a "perceptional" easy way to the clothesline, my body registered some mild SMS lock-down.  Stubbornness can sometimes be foolhardy.

Reaching the clothesline, continual spasm and rigidity made lifting the hangers to the line a feat comparable to Mission Impossible.  There wasn't a disintegrating tape, just my self-confidence melting in alarmed panic.  Past experience and survival instinct had me crouch on my knees in the grass, fall safety at ground zero.  During this brief lapse of physical calm, I prepared myself with extra medication for what I knew would be coming.

Severe continual spasms of my torso kicked in with a vengeance.  My body became immovably rigid except with the vicious attacks of spasm.  I do have rhythm when in spasmodic mode.  I just don't care for the music.☺  I clutched the spouting while my body played out the dramatic symptom symphony.  I knew this spasmodic condition would last until the recent medication kicked in.

My mental thoughts strangely divided while I was in this state.  I had part of my faculties praying and in a state of sheer panic over my predicament.  A calm part of my mind was rationally thinking about how long could I be in this state before I died.  I reminded myself about others who have had spasmodic experiences like this for hours.  I was looking for hand holds to try to stand up.  I was trying to calm my breathing like when I was in labor.  I was thinking about trying to lay down in the grass.  I knew that could possibly help break the myoclonic spasms if I was not stuck to the spouting and unwillingly maintaining a position of not falling.  Trying anything was a desperate and futile thought.

Somehow, I finally managed to let myself down on my left side.  I had a few convulsive body jerks and then delicious...nothing.  I lay in the cool grass, felt the dampness through my pants, and felt grateful.  Experience has taught me to just be still for awhile.  Attempted movement would start the entire symptom flick over again.  This was one rerun I did not wish to replay, let alone star in.

I thought how frightening my episode would look to anyone who could see over our privacy fence.  I realized I was alone.  While in these thoughts, I heard God's familiar comforting voice remind me, "You are not alone.  I am here with you"☺  I relived childhood memories, the simple pleasure of laying in the grass - doing nothing.

It was getting close to lunch, so I chewed my lunch medication while in the safety of my vertical position.  I needed to get back into the house, approximately 15 feet.  It might as well been miles.  (I could use a backpack with supplies to hang a few shirts on the line.)☺  I stood on wobbly legs and looked for handholds to creep/cling back to the door.  SMS symptoms started up again but not as severe as before.  I grabbed the shutters, dug my nails under the window until I came to an impasse at the patio.  I kicked off my shoes as a mental diversion that worked for a few seconds to get me two steps closer to the door.  Sweating, I gratefully clutched the patio doorknob that gave me the solace and security of "inside" accessibility.

I took an Aleve for the muscle aches I knew would follow the SMS hammering and sat in the recliner in my passive stretch and regroup pose for a few minutes.  As all of my learned tricks and the marvels of modern medication kicked in, I said a prayer of thanks as I shuffled out the door to finish my hectic agenda for the day.  Luckily, my mom was with me.

SMS adventures can give a whole new meaning to the question, "How was your day?"  My husband did ask what clothespins were doing on the snack bar when he came home.  Well...☺

March 4, 2005

Often, I find myself in a stressful squeeze of conflicts involving life's normalcy.  There isn't wiggle room to deal with issues, let alone work a chronic illness into the fray.  I feel as if something sucks my life, thought, and energy out of the top of my head.  Emotionally depleted, I am too empty to be depressed.  I just am.  Stiffman Syndrome thrives on negativity to wage a heightened attack on my physical body, depreciating my estimation of self-worth.  The syndrome becomes an easy target for blame and renewed loathing.  One of my heaviest emotional burdens is second-guessing my ability to parent.

When I am emotionally parched, relief will come in the most unexpected ways.  One evening, I was at the computer and my daughter walked up behind me.  She was playing with my hair while sharing an experience with me which turned this moment into something very special.

She was discussing the kids at school and the disregard, disrespect, and cruel way they respond to other teens with  physical or mental challenges.  A fellow student has cerebral palsy.  He was having difficulty opening a door.  My daughter told me that she helped him open the door and held onto him as they walked through the door.  She was telling him about me having SMS.  He told her he was wondering how she knew to hold him correctly.

My daughter laughed and said, "My mom clings to walls."

He found humor in their discussion and responded, "I wish I could cling to walls."  He asked her if she was going to the upcoming dance and she told him that she was.  It saddened her when he shared he had never been to a dance.

After a moment of quiet reflection, she said, "Mom, I do not understand why people act that way.  Thank you for raising me the way you have.  I have learned so much from your illness."  She gave me a quick kiss on the forehead in parting.

Unknown to her, she richly blessed me in that moment.  No, I wasn't "normal," but it reaffirmed a truth for me.  This difficult road is not what I would have chosen for an enemy, but the different scenery is sometimes inspiring on the off-beaten trail.  You learn a heightened sense of direction and discovery along with your fellow travelers.  The road not taken...

February 9, 2005

I fondly remember the game show, Let's Make a Deal, with Monty Hall.  Contestants wore original get-ups ranging from zany to adorable to bizarre.  Amidst feverish shouting and yelling, contestants were offered to keep an undisclosed amount of cash in a can/envelope or exchange it for an unknown prize or a "zonk" (gag) behind the curtain.  Uncertainty lent an adrenaline rush to the frenzy followed by a pregnant hush accompanying the choice.

I live a Stephen King version of Let's Make a Deal with SMS.  My costume is the look of normalcy.  I do not play for prizes.  I play for coveted mundane.  My nervous system is on a continual adrenaline rush.  In SMS Let's Make a Deal, the zonks usually outnumber any prizes - freedom from symptoms.  The goal is to try for the smallest zonks or blissful nothing.

Stiffman Syndrome makes me a human barometer.  Unseen weather changes will play havoc with a comfortable SMS place, letting me know "something" is going to happen.  The last couple of days showed some activity on my SMS seismograph.  I had plans for my day, a desire to clean house.  You learn to appreciate chores like cleaning when they become "difficult or impossible."

I played the waiting game.  Taking my meds and relaxing in the recliner, I finally reached a place where I felt I could "attempt."  After all of these years, I am still amazed at the bipolarization of SMS.  I entered my daughter's bathroom to pick up the rugs.  A purple hair-tie was hidden in the rug.  It fell out as a shadowy thing, resembling a tarantula to my SMS vision.  I startled and my foot landed on the offensive hair-tie, sending an SMS shock through my body.

I fell.  Luckily, this was an SMS sissy fall.  I landed on my knees, unhurt.  An SMS fall does not officially count without one of the four B's: bump, bruise, break, or blood.  Stitches, a bandage, cast, or a lowly ice-pack elevate injury status from minor to impressive.  A plus, I was able to get up, knocking several points from my execution score.

I was thankful.  This was a zonk, but like in Monty's day, I kept the can with a few hundred dollars and turned down the curtain hiding the new corvette.  I was still a winner.

I wonder if purple hair-ties could be used on Fear Factor.☺

January 27, 2005

Yesterday, I accompanied my mom to a doctor's appointment in Denver.  Every trip is a diversity of interaction, sights, experiences, and mini-dramas.  I always enjoy being a social voyeur, a sometimes participant.

Waiting for the rural transit, on a bench across from the hospital, I had the distinct advantage of blending in with society's idea of "normalcy."  Being an imposter for "the picture" of health, I gave the exterior illusion of social majority.  Internally, I understand and live with the minority labeled "disabled."

As a small child, you instinctively know or maybe are coerced into the obvious inadvertent response to an individual who is obviously mentally or physically challenged - different.  I remember being very small and my obvious delight and intrigue in my first sighting of a little person was squelched with an admonishing, slightly horrified whisper of, "Don't stare."  You learn to not acknowledge.  Obvious avoidance can unintentionally be a more negative response than honest interest.

The challenged aspect of me noticed them first, two men in wheelchairs rolling behind our bench to cross the street to the hospital.  I noticed the atrophic legs of both men, in stark contrast with strong upper bodies.  I felt a never-spoken kinship with these gentlemen - the secret understanding of affliction.

The woman in me appreciated the masculine attractiveness of both gentlemen.  They were in their thirties.  I could see, almost feel, the male camaraderie between them.  As with all men, there was a slight progesterone competitiveness in crossing the street and wheeling up the hospital drive incline.  I had to smile as I watched them.  My private assessment did not include prejudice, paranoia, or pity; just an honest, "Hey, now." ☺

January 22, 2005

But You Look Good is a booklet by the Invisible Disabilities Advocate.  I have yet to read the booklet, but I want to.  It has been a recent topic on the SMS support group.  I wanted to write my personal feelings the booklet title evokes for me before I read it.

Invisible disabilities say quite a bit for two words.  Having Stiffman Syndrome, I have learned most disabilities are invisible.  As a society, we "assume" a person should be obviously crippled or mentally challenged to be disabled.  The hard knocks, of living the disabled experience, have taught me that is not the truth.  The old cliché, "You can't judge a book by its' cover," comes to mind.

I am relatively young, somewhat intelligent (There would be some to argue that point.), and very animated in discussion.  With spasms in a diazepam stupor and poised on a chair, no one would ever guess me to have an illness as serious as Stiffman Syndrome.  "Normalcy" and health are things I desire most in this life.  I work so hard to present that facade to the public.  There is a social stigma of weakness and subsequent shame to be "labeled" disabled.  If only people knew how much strength it took to live with chronic illness.

Chronic illness is insidious and malevolent.  He can be and often is a chameleon to the outside world.  To those afflicted, he is a constant predator.  Predator, a good choice of a word.  Arnold (Governor of California.) Schwarzenegger (Good spelling bee word.) played a special forces military leader in a movie called Predator.  The predator was an evil alien who hunted and killed humans, much like chronic illness.  His appearance was fearsome, loathsome, and he was large.  He had the capability to blend into any surrounding, completely undetectable to those he preyed upon, again, similar to chronic illness.

As with many who have chronic illness, I have heard those words, "But you look good," so many times.  Just what am I supposed to look like? - a morgue escapee?  This comment is often laced with innuendo or awe.  It would be nice if it were a simple compliment and not a speculative query.  One of the most memorable was an ER doctor telling me, "You do not look like a chronically-ill person."  Thank-you?

It many ways, it is a tragedy/comedy.  It can get more confounding when I disclose I am a grandmother of five.  Just what are grandmothers supposed to look like?