Category Archives: Dealing with Disabilities

I JUST WANT MY PAGER BACK

Image Source: http://www.mashable.com

While most people get thoroughly excited about new technology and buying the latest and greatest, I’ve had the worst bout of anxiety the last week, including being literally sick to my stomach and then nearly having a nervous breakdown in a store, all due to my 4-year-old non-smartphone conking out.

Well, how could that be?  Everybody just loves new gadgets! After all, who doesn’t want to keep up with the freaking Joneses?  I mean, who would be proud to own an 8-track player?  One of my best memories is listening to Earth, Wind & Fire and Paul McCartney and Wings on 8-tracks in my father’s British racing green Jaguar XK-E roadster in the ’70s, dammit! Let me pose this question: if old things are so bad, why is my father’s former car worth a small fortune now?  Surely, newer cars are better than old Jags with notorious electrical problems.

Yes, I know.  Years and years before I got sick from Ehlers-Danlos syndrome and then developed keratoconus and lost the ability to socialize with others and my career which keeps anyone tech-savvy, I had a love affair with certain aspects of technology, especially my Nextel pager and I still remember the number.  On the rare occasion that I went to a doctor appointment for something treatable like strep throat, my pager would inevitably go off as I’d forget to switch it to vibrate and I’d get an odd look from the doctor, as only doctors and drug dealers had pagers back then. Was I involved in either profession?  Well, that’s classified information at this point.

Nonetheless, I got a cell phone in the late ’90s due to a job as an English-Spanish medical interpreter where it was required, but wouldn’t part with my pager until 2001, the same year I dropped my land line, and what a sad day that was as you rented pagers and had to give them back.  My big career was in program administration in the non-profit sector and despite my education, it didn’t pay a lot so I had a second-hand TV and VCR as I was never one to sit around, but I had a great Sony stereo and had worked an entire summer when I was 16 to put the best sound system in my then car, complete with a first generation Alpine CD player that skipped every 10 seconds and huge, MTX sub-woofers with a ginormous amp, so there. But that was then and this is now.

Now, I can hardly see the so-called basic phone sans data plan that I have, but I got it before my vision started to go in 2011 so I remember how to do things and it has big buttons on the front so I can actually call exciting people like rude receptionists at doctors’ offices and my frustrating insurance companies.  So, I could do all that until my phone’s reception got very bad and then started dropping every call 2 weeks ago and I knew I was in trouble.  Surely I could get a similar model that was sturdy enough for someone who misses the counter a lot, though.

Oh, how wrong I was as I perused the options at Best Buy one night, even though I needed to buy my phone from my carrier’s store which was closed.  I even looked at the 2 phones left with keyboards as I can feel the buttons, but they were so flimsy I knew they’d break within 5 minutes, so I was up a creek and would have to get a stupid smartphone and then the massive anxiety kicked in.

I’ve held and looked at one smartphone in my entire life—an iPhone—and I had no idea how to do anything with it and even worse, I couldn’t see the font on the screen and I was in a waiting room, which meant it was on the rare occasion that I had my iffy sclerals in.  My hairstylist has a tablet and I pay her on that and can see it with my sclerals in, but again, I normally can’t wear them and how do you make a call on a tablet even if I could afford it?  Can you hold that huge thing up to your ear if it even makes calls?  I have joints that subluxate, or partially dislocate, and ache from holding my little phone to my ear, so what was I supposed to do in order to have a screen I could see?

I headed to my carrier’s gadget store the other night and had over an hour wait in a room with jewelry-store lighting that made it very hard for me to even browse while squinting from the brightness that further distorted my vision, but I tried. Trying involved attempting to turn on phones that didn’t seem to have buttons, accidentally making music play really loudly without a clue as to how to turn it off, seeing if I could text the following on a screen: this is really hard, which looked something like: rjod ua twskku jsef.  I had no idea my skeletal fingers were so large and wondered how a linebacker-type texted on these things as I can’t totally blame that on my vision.

Oh, I should mention that I swallowed my pride prior to dealing with the 20-year-old sales guys and stated that I had severe anxiety over this ordeal, was visually impaired, am aware that I drove to the store, and I had no idea how to use a smartphone and was really pissed off that my old LG couldn’t just be repaired.  Actually, I said all that to the security guard who then directed me to the aforementioned sales guys so I could repeat it all.  Remember when you could repair things? Yeah, that concept is stored in a vault with the dinosaurs now and other things we know once existed but disappeared, unless you’re that Duck Dynasty redneck who thinks dinosaurs are the work of the devil—I digress.

So, Junior quickly led me to a huge Samsung that was the size of my face and said that Samsung has done a lot for those who have vision problems and are hearing impaired or something along those lines, but didn’t get into details.  I’m not Helen Keller and I can hear just fine!  I also had a Samsung phone that cracked into some odd, spider web thing, so aside from not being a Samsung fan, I was also able to see on the big sign that the phone, with a 2-year contract, was $399.00—the most expensive in the store in the heart of my ghetto neighborhood.  Wow, that’s like 4 months of groceries I think and I’m well aware of the fact that most people in these parts don’t have my good credit or legal status to even get a contract phone.  Was this some kind of presumptive thinking about a fellow minority simply because I came in speaking English, was traveling solo, and quite frankly was fully clothed: boots, skinny jeans, jacket, big scarf—unlike the half-naked women who roam this area?

It just makes me curious as to why this kid would assume that a visually impaired woman in the ‘hood had good enough credit to get that phone (yes) and had that kind of money to blow on a phone (no) since he didn’t show that Samsung to anyone else in the packed store, many of whom were talking on old phones like my current one and even flip phones from the 2000s.  Well, maybe his biased thinking is why he works there.

After that and my growing irritation after being stereotyped, I was left to my own devices—pun intended—since they clearly knew nothing about adapting phones for the visually impaired, although close to hour 2, with my eyes and body killing me, I was told I could hold the phones sideways to make the keyboard bigger and text that way.  Wow, that info could have really spared me the partial breakdown when I screamed at everyone around me that they should thank their lucky stars that they could see.

So, in the end, the cheaper iPhones had too many app things creating a ghosted mess and were too small for me to see well even with my lenses in.  I think I missed the whole Android section, unless that’s the same as a Droid.  So, I was back to the center-of-attention smartphones where the huge Samsung was that was royally irritating me, but I noticed an LG, my lucky brand, which was under $100 as it’s been out for a mere 5 months per a web search I did later.  So, that’s what I got, but I didn’t get it because the whole city is out of them so it has to be mailed to me and then I have to go back to that ridiculous store and wait 2 hours and be the Anglo who’s not an Anglo due to how I dress via my thrift store wardrobe so that they can do something to set it up and sell me pricey things so I won’t crack the screen like I did with my forehead a month ago.  Oy vey.

As I’m just on hold for the time being, I read some online reviews and figured out how to turn the LG smartphone on and off, so I’ll know how to do that, but how will I make and answer calls, actually send texts, turn the sound off when I sleep and go to my doctor appointments, figure out where the hell the alarm is so I can wake up, and the other very basic things I need a phone for?  My brother told me in an e-mail that I can watch videos on YouTube to figure things out more, so I guess that’s my plan of action for now.  I think I’ve sent him 20, anxiety-laden e-mails about this debacle while he talks about more confusing things like downloading music, but at least he’s trying to help.

If anyone needs to watch videos or listen to music (is that streaming?) or anything else I won’t be doing on my smartphone as I have no clue how to nor do I care, just page me and I’ll hook you up.

“Had a beeper goin’ off like a high school bell.”
Ice-T’s “6 in the Mornin'” (1986)

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MY LITTLE ACCIDENT

Accident

This was my forehead after I spent 8 hours applying a compress to stop the bleeding.  I probably needed stitches, but I couldn’t afford to go to the ER so in the middle of the night, I super glued my forehead together, which is actually better than sutures for my fragile skin.  I heard this method of closing wounds was used during the Vietnam War, so good enough for me.  In fact, I can source that fact right here, although having training as a medic would’ve been helpful at the time.

I wasn’t in a car accident; I was trying to grab my cat’s litter box from under the built-in desk, but due to being visually impaired from keratoconus, I slammed my head into the sharp, laminate edge of the counter top and because my defective collagen makes my skin so weak from Classical Ehlers-Danlos syndrome (CEDS), I split my forehead in half, or however long that gash is.

Now, in the grand scheme of all my problems: living with severe, chronic pain, having a body falling to pieces, dealing with major visual distortion which makes it hard to tell how far away a counter top is, surviving off 6 foods, being semi-homeless and on and on, hitting my head shouldn’t be a big deal, right?  Well, it really is and here are a few reasons why.

People with CEDS, a genetic connective tissue disorder, have defective collagen V, which causes poor wound healing and wide, atrophic scars—also known as cigarette-paper scars—along with 1 million other things.  I think I hit my head 2 weeks ago or so and the scar is looking very purple and keloid-like right now, but if history proves correct, it will keep widening and then the center will turn into thin, papyrus-looking skin—right across the middle of my freaking forehead!

But, that is just part of my little accident.  I apparently hit my head so hard that my brain literally shook.  Yes, it took me a few days to realize I’d sustained a concussion from this thing once I could get back online and Google my symptoms.

At first, my forehead just felt like someone was driving a stake through it, so I went through every bag of frozen veggies in the freezer icing my head.  Then, I got v-e-r-y sleepy and just had to lay down and I fell asleep without Ambien CR for the first time in over 8 years and I kept sleeping like that: in 3 to 4 hour bursts throughout the day and night.

Now, while all this was going on I started to get really nauseous, which isn’t normal unless my pain gets above a level 9 on the Richter scale.  And even worse, the lights were driving me absolutely insane and I got double vision, so instead of seeing 6 of everything like normal, I saw 12. Therefore, I just stayed in this dark, distorted cave in my sleepy stupor with frozen veggies on my head and prayed I wouldn’t throw up, which I luckily didn’t.

Now, how many days was I in the cave?  I have no damn idea. I don’t remember much of anything, other than trying to text someone and not being able to do that at all, not that I can text well in general due to my vision.  I know I posted a draft that I had saved on my blog a few days out.  I also remember contacting my mother, but I’m not sure if that was by phone or e-mail.  I know I was trying to get help and she lives one state over from me and can drive here, but she was too busy getting some cosmetic procedure done to her face to be bothered, so as usual, I was in the cave all by my lonesome, aside from my beloved cat, who really could care less about her litter box being a little stinky I suspect.

To add insult to injury, literally, I got kicked out of physical therapy until I received clearance from a doctor stating it was safe for me to come back, but I had fired my rude and inept GP, so I missed a couple weeks of my much needed PT, not that I should have been doing any exercise, but my brain didn’t seem to comprehend that.  In fact, my brain wasn’t comprehending much of anything.  For example, I did a bunch of labs in December for a disorder associated with Ehlers-Danlos and I had to twist that doctor’s arm to even get him to order the tests for over a year.  However, I couldn’t recall what the tests were for all of a sudden.  How odd: this disorder I had researched in the medical journals for so long had just flown right out of my head.  It definitely started with an M, but what was it called?  Hmmm…

Since the concussion, I don’t sleep with Ambien CR anymore, not that I’m sleeping well and unfortunately, my circadian rhythm disorder is definitely here to stay.  I’ve also made some changes in my life, like deciding to not tolerate rude and discourteous people for 1 second anymore (yes, if you are one of them, goodbye) and getting rid of some useless online activities that were anything but helpful.  Who knew about the benefits of cracking your head open?

If you ever hit your head and anything in this article on concussion rings a bell once your brain is working a bit better, I hope you have the following if you are in the States:

Money 
Good insurance
A doctor
Transportation                                                   

My mother suggested that due to my disabilities, such a nasty word coming from her mouth, I should wear the following on my head.  Come join me so everyone will know how special the disabled are and you might just get a trophy, too!

For the 1st time, my home team won the Super Bowl! Go Hawks!

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COCONUT-LACED MEMORIES & HOW PHYSICS IS RUINING MY LIFE

shutterstock_121977952

Photo Source: http://www.tiana-coconut.com/

“What is your depression like?  We’ve never discussed that,” asks my newer counselor at the not-free free clinic. They are post-graduate level interns, which hasn’t done wonders for me in the 2 years I’ve gone there.  At least they know that depression accompanies chronic illness like a fever accompanies the flu.

“It’s like a dark cloud over my head and everything goes black—the light at the end of the tunnel went out years ago,” I reply. “Then,” I say, “I go to the past—before I got sick—when my life was good.”

I get a stare.

“What about the future?” my counselor asks.

“I never go to the future anymore—it’s too scary.  The future means more illness, more pain, more medical bills, maybe living in my car next month,” I answer matter-of-factly.

My counselor says, “Most people are stuck in the past and the future.”

“Not me,” I reply back. “I just go to the past and I’m stuck with the present, but I never go to the future.”

“The past is just an illusion—it doesn’t exist,” states my counselor.  It feels like I have been socked in the face.

“WHAT?” I reply, and give a thousand examples proving otherwise.  My counselor’s explanations make no sense while my brain goes through those thousand memories like still photographs in my mind.

I’m supposed to appreciate small things in the present.  I already gave the example of my cat weeks ago.  My eyes wander in the small room and then to the bushy, palm tree blowing against the window that I can see fairly well.

“I like that palm tree,” I tell my counselor. “Those trees have the fronds that look like a fan.  You need the fan-shaped fronds to build a palapa—those thatch roofs made of palm fronds in México.  I had one built and they had to go high up in the jungle to get to those trees.”

“You found something simple that gives you joy,” responds my counselor.

“It makes me happy because it takes me back to a better place—a time in my past,” I reply back.

I leave the appointment with my head swirling.  Did I have anything left?  Where was my past if it was just an illusion?

I came back to the motel and Google spied on an ex from over 15 years ago who I’d been trying to find forever—and finally did.  A little trip down memory lane.  Then, I was even more depressed that the only Jewish guy I ever dated—even if he was so neurotic that I dumped him—hadn’t turned back into the Super Size American he was before I met him at 22 and that he was married and actually had his good hair still. His face had aged and I really didn’t recognize him very well, although I have a photo of him somewhere from the brief time we dated so long ago.  Was the past an illusion, after all?  He wasn’t the same.  How different do I look?  At least his wife was a hot mess—he used to tell me I looked like a supermodel, minus the height thing.  Then, I had my usual meltdown.  So much for memory lane.

So, today I Googled this concept that makes no sense in my mind: the past is just an illusion.  An illusion is a rabbit in a magician’s hat.  I figured this is what I get for going to the not-free free clinic.  It’s actually physics it appears.  I underestimated my counselor.  Albert Einstein first described it in his theory of relativity.  Stephen Hawking and all the big physicists follow the theory that all time is an illusion: the past, the present, and the future.  Einstein said, “The distinction between the past, present, and future is only a stubbornly persistent illusion.”  For those science-types who would like to learn more, you can read this boring article.

I don’t have any interest in the theory of relativity.  It’s not going to give me my life back, which is all I really care about anymore, aside from my 3-legged cat.  I hate physics and I never even studied it.  Physics is that weird uncertainty principle on that huge blackboard in A Serious Man that Larry, the physics professor, dreams about—as seen in this clip. Throughout the movie, he always asks, “Why?” and never gets an answer.  It’s a Jewish thing—this need to know why all the time.  Maybe I would have done well in physics.  I was only one of two students in my class to pass logic in college and with a 4.0.  My friends watched as I wrote 20-something page solutions and were convinced I could crack codes for the government.

Maybe physics is logical, but it seems abstract—like why I can’t see anything due to keratoconus despite my good visual acuity per the eye chart.

“High order aberrations,” said my dry eye doctor when I decided to ask him 2 weeks ago due to my inept corneal specialist. “It’s physics.  Let me give you an example.”

He mentioned waves and I was already lost.  I even took oceanography.  He drew side views of misshapen corneas like mine, which I’ve seen and I understand.  I’m a visual learner. Aberrations are refractive problems, which leads to less-than-perfect vision.  In my case, light isn’t refracted correctly due to my Rocky Mountain-shaped corneas, or one of them after cross-linking.  This creates a high order aberration, or more specifically, a vertical coma.  Due to keratoconus, I also have nearsightedness and farsightedness, which are low order aberrations.  It’s all just physics.

“Why can I read 20/40 then?” I implored.  Actually, I read 20/70 that day, but the DMV doesn’t need to know that, or that I drive in two lanes.

“Well,” said the good doctor, “The exam is under optimal conditions—it doesn’t represent how you see in real life.”

Finally, an answer to my why.  My distorted vision isn’t an illusion—or is it?  My brain remembers that there is only one moon, not the several moons that I now see in the night sky. Maybe my entire life has become an illusion.

This is what I know.  I am who I am because of my past.  The good memories gave me life and the bad memories made me a survivor in every sense of the word.  Some events from years ago are so clear they play like a video in my mind. Certain smells can transport me in time or bring people back from the dead.  The simplest things can trigger a memory from my past. They are as real to me as the present moment. No illusions and no smoke and mirrors.  The past is so tangible to me—it is alive for as long as I remember it.

I remember when my father was a dad.  I remember when I was a roller skating queen.  I remember when I had acquaintances and best friends and boyfriends.  I remember when I fell head over heels in love.  I remember when I went out on the weekends—every weekend.  I remember when I drank too much and I don’t care.  I remember when I had fun and laughed all the time.  I remember when I spent the whole afternoon at the mall.  I remember when I sat for hours people-watching.  I remember when I was in college.  I remember when I had old apartments in Seattle that I loved to decorate.  I remember when I was a good cook and could eat almost anything.  I remember when I read books and sipped soy lattes on the weekends in coffee shops in rainy Seattle.  I remember when those who are now gone were alive.  I remember when I enjoyed the present, but lived for the future.  I remember when I was an expat in México.  I remember when I had a life.

And I remember that every Sunday in my early 20s, when my business was closed like nearly every other in the pueblo, my stray dog and I walked to the puesto de cocos—the coconut stand—and I would buy un coco and the vendor would hack the top off with a machete, give me a straw, and my dog and I would walk to the sandy beach on the warm Pacific Ocean and I’d drink the water from my coco and talk to my friends while my dog ran free and life was as picture-perfect as a postcard.

This was real.  I lived it.  I can’t go back, but I can re-live it in my mind and I am someone again—someone who was healthy and pain-free and not visually impaired and didn’t stay in a motel and lived life to the fullest and could be anything I dreamed of.  That is where I go when the sky becomes black and the light at the end of the tunnel is still gone and there is nowhere else to go because the present is a nightmare I can’t wake up from and the future is a slow and painful death.

Physics answers the big mysteries of the universe and explains why planes don’t usually fall out of the sky.  It doesn’t delve into the human experience and try to make sense out of the nonsensical.  Isn’t that what counselors are for?

By the way, according to the theory of relativity, everything you just read is an illusion—it’s in the past now.

The MarineI dedicate this post to the memory of my beloved, paternal grandfather, whose yahrzeit—the anniversary of one’s death in the Hebrew calendar—falls today.  I lit a candle, said Kaddish, and made a small donation at sunset, when everything begins. This is what we do.  My grandfather was larger than life, the strongest man I ever knew, a traveler of the world, and as seen here, a self-enlisting Marine in WWII who fought in Okinawa and survived.  He died the year I got sick, but the smell of rye bread brings him back in an instant.

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ALL BARK & NO BITE: I JUST NEED A SPINAL X-RAY!

Photo Source: http://www.petsbest.com

I live in a weird city with weird people.  I also live in the ‘hood, which is an ethnically diverse mix of undesirables and makes it even more interesting.  It’s not the South Side of Chicago by any means.  The Southwestern U.S. was largely developed in the latter-half of the 20th century, so imagine rows of mid century, rundown strip malls filled with liquor stores, pupuserías, laundromats, payday loan shops, and taquerías jammed between big box stores and junkies roaming around every parking lot trying to hustle a buck off you.  Due to my low vision, lack of rides, and the sun setting later, I’m stuck attempting to drive during the day, which has forced me to access the medical care in this stellar part of town whenever possible.

I have needed an X-ray of my spine since I got sick 12 years ago, as I have a bizarre vertebra jutting out to the right in my lower cervical spine and mild scoliosis in my thoracic region, combined with unrelenting back pain from Ehlers-Danlos syndrome (EDS).  I finally got my new PM&R doctor to refer me to an imaging center and I found one within a mile of where I stay.  It is also the only place that takes appointments, so I wouldn’t have to sit for 3 hours, which really hurts.  I called and asked for the latest appointment, which was at 4 pm and the receptionist told me the X-rays would be taken at 4:30 pm—typical of how imaging centers work so that everything runs on schedule.

As I have difficulty filling out forms due to my vision, I picked them up a week prior so I could take my time and fill them out in the best light.  It took me about 1 hour to find the place as I can’t read building numbers or the signs that say what is in the buildings.  Just trying to drive is enough of a nightmare. After numerous attempts and driving in circles, I eventually went into the right building and found the center, but it was closed.  I tried another day and finally got the forms.  It’s part of life with keratoconus, so I didn’t make a big deal about it, although my low vision made me rather depressed that day.

This Friday, I had my appointment for the spinal X-ray.  I was running almost-on-time, but got there 1 minute late and had all the forms filled out already.  I gave the front desk woman the forms, with a brief explanation as to why I already had them, handed over the necessary cards, and was told I was after Barbie Big Boobs—a typical look in the ‘hood due to all the strippers and hookers—I mean escorts, and that it would just be 15 minutes or so.  Wonderful!  I didn’t have to wait 3 hours like I do at the eye doctor or would be doing at the walk-in imaging center across the street.

I wasn’t feeling well as I’d pulled several muscles that go from my ear down to my shoulder joint in my sleep (again) and my whole body aches chronically in general.  It’s all a typical day with EDS.  I just wanted to get the X-rays over with as I had to get my brake light fixed and then go to the pharmacy and blow more cash (again).  I also hadn’t slept much due to the steroids I’m on (again), which doesn’t help anyone out.  Yet, I complained to no one and had my smiley face on while I took my seat.

There was a woman in the waiting room I’ll call Misty, a creative, white-girl name like her real one, who was blabbing with her friend on her cell phone in a very loud and annoying voice and using words that were definitely not appropriate in a small, public place.  I could sort of make out her face and she looked like the dog above.  As a disclaimer, if your name is Misty, don’t take offense.  I know a woman named Tiffani—that is an i at the end—who is nothing like her name.

Suddenly, Misty got off her cell and began to yell at the front desk woman from her seat.  It appeared her complaint was that she had an appointment on Sunday for an MRI, but they had called to let her know there was an opening on Friday if she would like to reschedule.  Obviously she rescheduled, as she was sitting a few seats to my right.  She went on and on about how she was told her appointment was at 4 pm, not 4:30 pm. She told the front desk woman to, “tell the guy in the back to hurry up,” which the front desk woman stated she couldn’t do. She also added that the MRI of her back would take 2 hours and she couldn’t be there all day.  That’s amazing as I’ve had an MRI of my back done in 30 minutes or so.

She demanded to know who had told her to come in at 4 pm as she had stuff to do.  The woman calmly told her it was someone in scheduling.  Misty demanded she give her the phone number and she whipped out her cell phone again. She seemed to think her cell phone was akin to a Glock 9.

Someone must have answered in scheduling and Misty said she wanted the supervisor.  She abruptly had a calm, quasi-professional voice, aside from her confusion of past participles as she stated, “I wouldn’t have drove all the way over here to wait 30 minutes.”  It’s driven, Misty, driven!  She went on and on again about her predicament and was so infuriated that her appointment was really at 4:30 pm. She told the supervisor how the front desk woman would do nothing and wouldn’t even go to the back and tell the imaging guy to hurry up, despite her asking.  She had a fondness for ending every sentence with, “You know what I’m saying?” and there were a lot of uh-huhs on Misty’s part as the supervisor must have been trying to appease her. She just felt so special that someone was listening to her sob story.  Did it ever occur to her that she would be waiting 30 minutes on Sunday, as well, if she hadn’t rescheduled?

Now, I am one who often jumps into weird situations in this weird city in a “What Would You Do?” scenario, but I just decided to sit there with my finger in my ear in attempts to block out Misty’s ranting and hope the tech would soon be done with Barbie Big Boobs, who was also there for a spinal X-ray, presumably due to her Super Size implants causing an achy back or possibly her 6″ stripper boots throwing her off balance.  Poor thing.

I couldn’t help but take stock of my situation at that moment. How many hours of frustration did it take for me to get and fill out the forms due to my low vision?  While sitting in the waiting room, I wasn’t able to see the TV or read a magazine or do much of anything.  I still had a racing heart from driving there in daylight and pulling a U-turn on a major thoroughfare and praying there weren’t any oncoming cars that I couldn’t see.  I kept rubbing deep into the knots in my neck and shoulders and wishing that for once in 12 years the pain would stop.  I was worried about what else the X-rays might reveal, as I already have 2 troublesome spinal issues.  I spent over $13,000 USD on medical bills last year.  I live in a motel due to being broke, on disability, and other factors.  Unlike Misty, I have no friends to call on my cell phone, which is actually good as I don’t have many minutes. It’s not a smarty-pants phone and I don’t pretend it’s a Glock 9.  I wasn’t complaining to anyone about anything.  I just sat there in the distorted-looking room while forced to listen to Misty’s temper tantrum over nothing.

Finally, my name was called and I got changed and went into the X-ray room.  I had to pose in bizarre and uncomfortable positions over and over and then lie on a hard table that hurt my whole body while the tech continued to manhandle my achy self in order to straighten me out while my barely 100 lb, skin-and-bones body tried to stay covered in an XXL gown, which was all they provided.

If your female body is half-exposed due to being underweight from a genetic disorder that takes away your ability to eat and digest food and the gown doesn’t stay on because you’re 1/3 the size of the average American male, then that’s your own fault I guess, but I didn’t complain and I just kept trying to cover myself up while making a joke about it.  I am quite sure the imaging guy was disappointed he got stuck with short Olive Oyl after X-raying flirty Barbie Big Boobs with her head of platinum extensions and perky bustline.  I could be legally blind and spot all that.

I was finally done after 20 minutes or so and as I headed out, I could see that Misty was gone, unless she gave up the corner seat to go have a slim n’ sassy Misty cigarette. Apparently, the important stuff she had to do really was top priority.  I could only imagine what choice words she said on her way out.  The front desk woman was now blabbing on her own cell phone—such professionals here, but I needed to make sure the report was going to my referring doctor. She looked up my name and said it would be sent—all while her friend was on hold.  I told her I hoped she had a better day and was sorry she had to deal with Misty, which she appreciated, so I did my good deed for the day.

Here’s what I would love to know.  What was so tragic about Misty’s life that she had to throw a barking, hissy fit over something so idiotic and ruin everyone’s day?  Who doesn’t wait a minimum of 30 minutes for anything in the U.S.—especially when dealing with our healthcare system?  What gives anyone the right to talk to an innocent party in such a demeaning way and disturb an entire waiting room due to their need for attention?  This is not appropriate behavior and makes it harder for cordial patients, like me, to get treated with respect when I finally do find functional healthcare.  There are standards that are followed in any medical center and this issue didn’t warrant any complaints. Of course, there are times when it is necessary to take a firm stance to get things done, but this didn’t fit the bill and it’s not how a decent person takes care of business, regardless.

If the Mistys of the world really want something to complain about, they should walk in my shoes for a day.  I can only wear flats due to EDS, which may make it a little easier, but I doubt they would last even 10 minutes.  Bark, Misty, bark—it isn’t going to get you out of this one, either.

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LIFE IN THE MAZE

Image Source: http://www.gwydir.demon.co.uk

Being in a maze is chaotic.  There is sense of confusion in your surroundings, an urgent need to find your way, frustration at the pure craziness of it, and there never seems to be anyone else in the maze with you.

This is how having keratoconus (KC) feels to me.

I know that a picture says a thousand words—and there are many computer-generated photos of keratoconic vision around the web—but does that really describe the reality of having keratoconus in its entirety?  I don’t believe it does. Most people who don’t have keratoconus can understand what they see in a simulated photo full of ghosting or streaky, sparkly lights, but they can’t grasp a never-ending life of the distorted vision portrayed in a still photograph.

A keratoconic, blogger friend and I have been discussing all the oddities that go along with our vision lately.  We have different stages of KC and my vision has improved in many ways as a result of cross-linking (CXL), but I still have keratoconic vision even if my visual acuity is much better than hers.  We realized that keratoconus has never taken away our ability to see color, for example, although I have problems seeing clear objects and knock over water bottles at least twice daily.  Why are they always full when that happens?

We also compared notes on what visual acuity (VA) really means when you have keratoconus.  We decided it’s not the same as someone with simple myopia.  For me, the lowest lines I can read are so faded and full of ghosting, or multiple images, that I get the lowest line I can see based primarily on knowing which letters my ophthalmologist doesn’t use.  It also takes me about a minute to read that last line and I read the letters in no particular order.  Starting in the middle and working my way out seems to work best for me.  Go figure!

Then there is the big, scary world, which involves so many things the non-KC group takes for granted.  Let’s begin with attempting to drive a car.  This is akin to trying to navigate your way through a maze, but with massive anxiety.  My doctor’s assistant told me yet again that I can read 20/40 with each eye—very questionable, so I’m technically legal to drive my car.  With keratoconus, vision dramatically gets worse as the day goes on so most have trouble driving at night—the 1st symptom I noticed, but CXL stabilized my vision and I no longer have this problem.

My biggest issue with driving is due to post-CXL light sensitivity.  If I am forced to drive during the day, it will only be to the eye doctor since the clinic is less than a mile away. I see multiple images of everything: other cars, pedestrians, buildings, signs, stray dogs, big trucks and buses, panhandlers, broken palm fronds, and whatever else is within my sight.

Due to this, I drive when it’s pitch black, but only once a week or so.  There is literally less to see at night, so ghosting is less of an issue.  I can stay in my lane, but I do feel I’m very focused when I drive, as if I were contemplating some abstract concept involving something I don’t understand, like physics. Good thing for the tinted windows to hide the bizarre expression on my face.

The bulk of my night vision is more like the mild stage of keratoconus.  I can’t read street signs anymore, have trouble seeing where to turn to get into a parking lot, and the streetlights and headlights of oncoming cars are bothersome and have halos. They used to look like fireworks, so I try not to complain.  It is absolute madness, but I feel I can safely drive at night now as I averted getting sideswiped by a possible drunk driver a few weeks ago.  The Department of Motor Vehicles may dispute that, but I’m sticking by my story—and my 20/40 VA.

The most frustrating activity involves a store.  I refer to this as being utterly lost in the maze and going down every dead end in attempt to find the exit.  This would usually be the big-box stores that are so common in the US, especially in the wide-open SW, but even smaller stores pose a problem. The trick is to always go to the same store and memorize every aisle and exactly where every item you need is before losing any vision, but that isn’t always practical or convenient, especially when they decide to move things around in the store for no reason.

I will put this in perspective.  I had to go to a beauty supply—a smaller store by US standards—for more products to put in my increasingly unruly hair due to the post-CXL steroid drops.  I knew where the hair products were and I could easily identify what I needed by the shape and color of the container, since I can’t read the small print on most items. Maybe the price had doubled?  Well, that’s part of the fun, of course.  I also needed eyeliner.  Why would I need that when I can’t see well enough to apply it with any precision?  I really don’t know, but I could see just fine less than 2 years ago and know I look a hell of a lot better with makeup.  I might look like a clown now, but no one has stopped me and told me so.

In search of the aforementioned eyeliner, I missed the aisle and ended up in the lipstick section, which I could tell was lipstick from the shape of the tubes.  I headed to the next aisle and saw all the rows of colorful sticks.  Eyeliner! Luckily, the brands are written on big signs and since I can see color, I grabbed my golden olive and headed to the cashier.  6 months post-CXL, I can now read the debit machines for some reason and can see money, but that was impossible before.  I was about to start using singles to pay for everything like Ray Charles did to avoid getting scammed.

Another bizarre place is the center of the maze: sitting in a doctor’s waiting room.  I’m not having to navigate or search for anything—I just have to sit forever and do nothing.  I can’t read a magazine, after all.  Unless someone is quite close to me, I can’t see their face and it’s an odd feeling.  I don’t mean this in any offensive way, but everyone looks like the pre-surgery photos of the man who was the 1st face transplant patient.  Just skin over a skull, except I can see the hair and skin color.  Just Google it.

It’s in these waiting rooms—my home away from motel room—that the anxiety from driving dissipates, the frustration of trying to see through the distorted stores goes away, and I’m left all alone in a bubble of utter isolation.  I feel that no one can see me, since I can’t see them.  It’s as if I’m in my own world at these times—the crazy, maddening world of keratoconus that got dealt to me in that crappy game of poker.

By the way, how do you get out of this maze?

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