Blindaversary

It seems like a lifetime ago.  At twenty-two years, I suppose it is a lifetime.  The anniversary almost slipped up on me this year.  But, this uncanny and often irritating ability I have to remember dates and even days of the week they happened—always pops up sooner or later.  This year, September 25^th falls on a Wednesday, just as it did in 1991.

The week before, I’d had a dye test where they photographed the blood vessels in back of my eye after a yellow dye was injected into a vein in one of my arms.  Then I nervously waited for them to call with the results.

They called me at work that Wednesday morning.  “You have diabetic retinopathy.  If you don’t have laser treatments right away you could lose all your vision.” 

Outside my office, my co-workers went about their business.  If someone’s world comes crashing down around them and nobody else hears it, did it really happen?  Apparently so. 

I needed air.  I needed space.  My office was closer to the back of the building.  The next thing I knew, I was standing in the alley, trying to catch my breath.  The intense Austin sun felt like it would cook me alive.

Home.  Just get home.  Now.

I found my way to the front parking lot, got in my truck, and drove to my apartment.

What am I going to do now? 

I had only been there a few months.  My health insurance wasn’t due to start until October 1^st.  Just a couple of months earlier, I discovered my kidneys were failing.  This news was like a hammer driving a nail all the way in.  Any pretense I had that maybe, just maybe I could stay in Austin and make it all work was gone.  After Tampa, Kansas City, and Dallas, I’d finally a place—the place—I wanted to stay.  It was so much like the quirky college town where I grew up but with big city amenities.  My paychecks were increasing.  After laying the groundwork, the accounts I’d opened were really starting to produce sales.  Life was on a steady upswing.  Well, except for failing kidneys.

My parents were anxiously waiting to find out the results of the test.  I called them and we made plans for them to drive to Austin the first weekend in October to help me pack up and move back in with them.  Life as I knew was coming to an end, but at least I wouldn't have to face it alone.  Still, as the oldest kid, I felt guilt at being a burden on them.

Since then, some of my worst nightmares came true.  Some amazing blessings rescued me.  I’ve had to pick myself up and go forward countless times.

When I want to torture myself, I try to imagine what life would have been like if my health hadn’t failed and I’d been able to stay in Austin.  I’ve been back twice—in 1996 and 2001.  Each time, it was so much bigger than before.  From what I hear, it’s much more expensive and resembles Dallas and Houston more than the place I remember.

There are two things I was good at then and, thanks to professional guidance and practice, am even better at now.  Writing and visual art.  There are some gifts that vision loss can dull, but never take completely away as long as there’s some vision left. 

In the months that followed me leaving my job, selling most of my things, and returning to Arkansas, I had plenty of time to sit around my parents’ house and ponder the future.  There was one thing I vowed to do over and over again: surpass the expectations of people who thought I wasn’t capable of much anymore.  I approached my new reality with the same tenacity I’d used to support myself in college and graduate in four years, even after changing majors and watching some of my friends give up. 

I run into trouble when I expect things to be as easy as they are for people who can see fine.  Sometimes it turns to resentment, which is as unproductive and unhealthy as guilt—another emotion that invades my mind when I remember the mistakes I made as a young diabetic in my teens and twenties.

On this day in 1991, the sense of fear and loss had me wondering if I would ever accomplish anything.  I assumed that my skills and abilities would be frozen where they were then, as a 27 year-old who had no idea what he really wanted to do with his life.

Back in 1991, it would have helped me to know that before I was halfway through my forties, it would be the most productive decade of my life (so far).

In 1991 it would have given me such relief to know that by the end of that decade, I would no longer be diabetic.

In 1991 I would have been overjoyed to know that ten years later, after eye hemorrhages, invasive procedures and procedures, I would create a large piece of art like this.  

 Visit Jim's web site JimFairbanks.net

The Mean Grocery Store Trick

The grocery store where I shop recently rearranged all the items on their shelves.  They said it was to make that store set up like the other three in town.  It seems plausible, though I suspect some kind of marketing guru told them they’d sell more if certain items were at eye level or at end caps.

For the average person it was a bit discombobulating.  But it’s turned me into a hungry rat frantically trying to find the cheese at the end of the maze.

They flipped the chips to the opposite end of the store and I still can’t find the cashews.  On one recent trip I ended up pacing up and down each aisle chanting, “Croutons.  Croutons.  Croutons,” until a stock boy asked if he could help me find anything.

What once was a 30-minute trip for a couple bags of groceries has turned into an epic hunting expedition for sustenance.  Even that wouldn’t be so bad if I could drive myself, but I have to catch a bus, so every second is valuable.  More than once, I’ve had to prioritize, which meant leaving certain items behind.

Maybe that’s how we can cure America’s obesity epidemic.  Rearrange grocery stores every few months so the non-essentials are passed up.  It wouldn’t be good for the grocer’s bottom line, but it would be good for everyone else’s waist line.

Visit my web page: JimFairbanks.net 

Check out my new blog: ConfessionsOfABornAgainDiabetic

This Week's Book Excerpt

This part is taken from What Didn't Kill Me Made Me Stronger.  It was in summer, 1992 after I had a vitrectomy.  It's an eye surgery that removes blood inside the eye's vitreous fluid after a hemorrhage.  After that, I never took fireworks for granted again.

Fireworks

The next vitrectomy was five days before my birthday.  On the fifth day after such an eye surgery, the bandages come off permanently.  For me, the most memorable gift that year was getting to take the bandage off my eye.  As before, the world looked extremely bright and out of focus, though it was a big improvement from before the surgery.  As before, I was also confident that my vision would continue to get better over the next couple of weeks.  After that, my vision would remain at that level …at least until something else happened.

I don’t want to make you think I was pessimistic.  The truth is I was as optimistic as ever.  But it was optimism with an underlying foundation of realism.  The jolt of the last eye hemorrhage had driven home an undeniable reality: I could lose my vision at any time, no matter how good it might get in the meantime.  In some tiny, remote part of my brain, I understood that total blindness was a likely outcome in the end.  It wasn’t a matter of if, but a matter of when.  Again, this wasn’t a pessimistic outlook.  It was a survival instinct at work, telling me to be prepared.  I didn’t want to be caught off guard again.

My days were spent taking long walks, watching TV, and listening to books on tape.  But this time, I took more notice of the colors around me.  They were more vibrant.  My vision improved gradually, and I took full advantage of being able to see.  Each day, I could see something that I couldn’t see the day before.  My vision reached a level that I was happy with, even if it wasn’t back to where it was the year before.

Then my parents and I were invited to Don and Ann Williams’ fortieth wedding anniversary party on a riverboat docked on the Arkansas River at Van Buren.  Dinner was served on the boat while we cruised up and down the river between Fort Smith and Van Buren.  It was very enjoyable – the first fun thing I had done in a long time.  Several members of their large extended family stopped by our table to ask me how I was doing and say how glad they were that I was there.  It was good to be out of the house and out of the hospital, and able to look around without a bandage over my eye or a dark spot inside of it.

A music festival was happening on the Fort Smith side of the river while we were on the boat.  After dark, they shot fireworks.  All of us had finished eating, and we gathered at the rail of the boat and watched.  For me, the sight was one of the most spectacular things I’ve ever seen.  The show wasn’t anything out of the ordinary as far as fireworks go.  It didn’t last longer than most.  But I was getting to see it with my newly healed eye, and that changed everything.  The bright colors of the starbursts high above us were clear as they lit up the night.  The river below reflected the brilliant light, broken into hundreds of points of color on the waves.  It was beautiful, and I didn’t take it for granted, even if it wasn’t quite as clear as it would have been a year before.

Tears of joy streamed silently down my face as I stood on the dark boat. 

Just keep quiet.  Don’t draw attention to yourself.  It’s their anniversary, so don’t make this all about you.

Around me, other people made the usual sounds people make when watching fireworks. 

“Can you see them OK?” asked Mom.

“Oh yes, I can see it all just fine.”  I was beside myself.  Something as simple as watching fireworks had filled me with joy.  It may have been Ann and Don’s party, but these fireworks were meant for me.  This was my reward for what I had been through.  This was God.  I just knew it.

That night, I vowed never to miss fireworks if I had a chance to see them.  Never again would I take for granted the ability to look up at the dark sky and see a kaleidoscope of fire and color and smoke.  From then on, it would be sacred.  And since then, that’s exactly how it has been.

Read more excerpts from Jim's book at JimFairbanks.nethttp://www.jimfairbanks.net/id30.html.

My Adventures In Health Insurance

I’m uniquely qualified to talk about healthcare.  In the past 25 years I’ve been disabled and non-disabled, diabetic and ex-diabetic, insured through employers, Medicare, and no one.  In the past couple of years the subject of socialized healthcare has been a divisive issue here in the U.S.  Aside from brief discussions with a few people I’ve kept quiet.

But the time has come for me to jump into the fray.  Lucky for me, I’ve got insurance if the fray hurts me.

My Type 1 Diabetes was a pre-existing condition (from age 12) which meant my employers’ insurance chose to ignore that area of my health needs.  I paid for the testing supplies, disposable syringes, alcohol swabs, and two kinds of insulin myself—when I could.  There were a few times when I had to use the syringes twice, risking infection.

And that was when I had insurance.  There were times when I had to cough up (pun intended) the cash to pay for every doctor’s appointment.

When I was 27, the diabetic complications started.  My vision and my kidneys started failing.  I had no problem proving I was in bad enough shape to get Social Security Disability.  Not long after that, Medicare became my only health insurance.

This is the part most lifelong healthy people miss.  If someone with a chronic health condition can’t get the help they need to take care of it, they can become disabled.  I went from paying into the system to being a consumer.  Maybe it was inevitable, but it could have happened later and I could have paid more to Social Security before needing it.

To keep from losing SSDI and the Medicare that comes with it, I worked part-time at a number jobs for which was severely overqualified and under challenged.  A diabetic with failing kidneys can’t expect a private insurer to go near them.  A VOUCHER WOULD NOT HAVE MADE ANY DIFFERENCE.  A voucher does no good if no one will take it.

Medicare paid for the kidney/pancreas transplant.  I was lucky enough to have people willing to help raise the money for the unpaid part of the surgery.  Not everyone is so fortunate.  I don’t even want to think about how a private insurer might have tried to dodge the whole issue.

Medicare also paid for a second transplant, four major eye surgeries, laser treatments, dialysis, and a host of other less serious procedures.

In 2004 I landed a state job and employee health insurance started paying for the deductibles and copayments.  Now that I’m a retired state employee, I’m covered by Medicare and private insurance.  I’m one of the tiny percentage of disabled people fully covered by insurance.

I can remember when my situation wasn’t so comfortable, which is why I don’t have that “I’ve got mine, Jack” attitude I hear too often from the chronically healthy.

Even if you don’t have a chronic health condition, an accident or sudden illness could make it impossible for you to work.  Then where would you be?  You’d end up with socialized healthcare.  You would be persona non grata to the private insurers.

You say you’re really careful?  You eat right and exercise?  Great, but your luck could run out.  Yes, luck is a factor, too.  A drunk or distracted driver could crash right into you.  Don’t let luck make you smug.

There’s an old saying, apparently forgotten my many: An ounce of prevention is worth a pound of cure.  Keeping people healthy is so much cheaper than playing catch-up later.

Not only do most healthy people work, they further their education, volunteer, and some even start businesses.

I’ve heard people say, “We can’t afford to cover everyone in this economy.”  With two-thirds of us overweight, we can’t afford not to.  Here is the Land of the Free it’s “eat now, pay later.” 

Well, I’ve seen the bill myself.  Millions of us won’t be able to stiff the restaurant and do a Dine-N-Dash this time.

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Lost In the Gym

A couple of weeks ago I went to the gym and almost everything had been rearranged since my last visit.  I know what you’re thinking.  “That’s what he gets for only going once every six months.”  But it had only been two days.

Looking down, I noticed the carpet was cleaner.  If I was able to tell the difference it must have been pretty dirty before.  They must have taken the opportunity to put those heavy machines—with their seats, bars, and stacks of weights—in a formation that made more sense.  For me, it was like a bad Helen Keller joke.  I spent a few minutes after using each one I needed to slowly spin around, looking for the one I needed next.

It made me feel a little self-conscious until I saw that I wasn’t the only one.  A few people even said stuff like, “I can’t find anything either.”  If misery loves company, so do blind folks.  I decided I would give myself some extra time each time I went until I memorized where everything was.

I really like the health club that I use.  It’s been at the current location two years.  The building was once a six-screen cinema.  I’ve lived in a former printing building, a former Catholic church, and a former carriage house.  I like old buildings that are remade into something different than their original function.  This one was originally a two-screen cinema when it was built in the 1970s.  The first movie I ever saw there was Star Wars.  Looking at in now, you would never guess what it had been before.

A week after the rearrangement, I was using a machine to work out my legs.  I hate working out my legs and I take unusually long breaks between sets.  Looking around, I finally realized the system they’d used when they moved everything.  There was a long, wide aisle running the length of the room.

Sometimes when we bother to look up at the bigger picture, we notice things are more orderly than we thought.

You Don't Have to Be A Standout to Be Somebody

Thanks to Facebook I was invited to the 30 year reunion for the class I went to school with, but didn’t graduate with.  Midway through 11^th grade my family moved.  That didn’t matter to those who planned the reunion.  It was about the shared experience of growing up here.

There were over 400 who graduated from FHS in 1982.  I wasn’t involved in any activities, wasn’t athletic, or a standout by any definition of the word.  I doubted many people would even remember me.  In addition to that, the big hairstyle of that era has been replaced by a crewcut and mostly relocated to my face in the form of a beard.

That tiny insecure voice inside told me to be ready for someone to tap me on the shoulder and say, “You didn’t actually graduate with us, so you have to leave.”

It also told me to be ready in case someone copped an attitude with me, like a high school student would.  Health issues (some potentially fatal), life in some big cities, vision loss, life in a couple of large cities with vision loss have all created a much less easily intimidated version of me than the one people might remember in high school.  I’ve had to learn to stand up for myself over the years.

Then a different tiny voice told me that time and maturity hasn’t ignored all those people.  It told me to just expect a good time.  Never mind the high odds of me being the only legally blind one there.  Or the only one with a couple of transplanted organs.  I might not be the most enviable one there, but I was pretty sure I had the most atypical life.

Three weeks before the reunion, I had my gall bladder removed along with a hernia repair.  I was down 15 pounds, which would have been a blessing for some, but not in my case.  In just a few weeks I went from being in the best shape of my life to the same scrawny body I had in high school.  It was a chore to find clothes that didn’t hang off me.  Everybody wants to look at these things, whether it’s been 10 years or 70. 

Yes, I was a little self-conscious beforehand about being the only visually-impaired one there.  But, that's almost always the case and I'm finally coming to terms with it.  Besides, most of the others have to use reading glasses these days.  I guess that makes me a trendsetter.

I had a good time.  People walked up and spoke to me, so it didn’t matter that I couldn’t see across the room.  I said, “You actually remember me?” about a dozen times.  The usual response was, “Of course I do.”

When I said that to Ziva, followed by, “I was such a nobody,” she looked me in the eye and said, “Everybody is somebody.”  This from one of the cool, tall, pretty chicks back in high school who I didn’t really know back then.  I had approached her wanting to connect with a fellow writer.

The next thing I knew, I was having a great time with her, Jinger, and Lisa (more cool, pretty girls who were at the reunion) on Dickson Street.  I expected to see old friends that night, but never expected to make new ones of people I hadn’t known back then.

Since then, I’ve done a little revising on the history book in my head.  I already knew that sometime since 1982, I had become somebody.  It turns out you don’t have to be a standout to be somebody and more people notice you than you think.

Now I stand out without really trying and not for the reasons I would have chosen.  Now I’m somebody because of that.  But it turns out I was somebody all along.