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

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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Web site JimFairbanks.net

 

Austin Revisited

Twenty years ago this week, I started a new job in Austin.  There was only a 3% vacancy rate on rental property at the time, so I had to stay with my friend Randy and his roommate, Peggy, until I found an apartment.  They lived in a small house near the airport.  Every day, dozens of jets flew over, making the whole place vibrate.  Conversations were put on hold.  Parts of TV shows went unheard.

After weeks of looking every afternoon after work, I finally found a nice place not far from downtown and the Colorado River, which dissects the city on the southern edge of downtown.  The tall buildings were reflected in the water.  To get to work, I took

Riverside Drive

to the western part of town, got on a highway, and then off at

Bee Caves Road

, where I worked.  I thought that was an interesting name for a city street and wondered where the caves full of bees were.

My job was sales representative for the Kinko’s in that part of town.  It was one of five in the city.  At the time, Kinko’s was moving from the college market toward a business-based clientele.  I called on businesses in the southwestern part of Austin, which is where the Texas Hill Country begins. 

I was doing outside sales (again), living in a funky, offbeat college town (again), and best of all, I was in the hills again (though not as green as the Ozarks).  I felt right at home.  It was like Fayetteville, but with all the big city amenities.  I was moving there from Dallas, so that was important.  And after living in Big D, Austin seemed quaint and small by comparison.

Austin and I have been through major changes since then.

Years earlier, Austin had been described to me as a “bigger version of Fayetteville.”  That turned out to be quite accurate—even down to how the city was laid out.  The downtown was closer to the southern—and less affluent--end of town, a street running east-west lined with bars, restaurants, and shops connected downtown to the university campus.  A bypass highway looped around the west side of town.  Farther to the west was a lake, just a few miles out of town. 

In May, I had used my employee flight privileges with Southwest Airlines to fly to Austin from Dallas.  It was only a 45-minute flight, but a three-hour drive.  I wanted to be fresh for the job interview and didn’t want to get up at the crack of dawn and risk truck troubles on the way there.

It would be an understatement to say I was optimistic.  It was a base-plus-commission salary, which meant unlimited income and even at the minimum it was more than I was making at Southwest.  I was excited about living in a more laid-back, offbeat place that reminded me of where I spent most of my childhood. 

At the airport, I rented a car.  I don’t remember the make and model.  I do remember it was nice, newer, and cleaner than my truck.  The stereo sounded good, too.  As I pulled out of the airport, I heard a new song by Lenny Kravitz for the first time.  “It Ain’t Over Till It’s Over” (http://www.youtube.com/watch?v=TmENMZFUU_0)  And I I thought.  Over?  This is a new beginning.  I’ll get this job.  I’m meant to be here.

They called and offered me the job on my birthday, which was on a Friday.  “Can you start on Monday?”  I told them I could, without knowing how I was going to pull it off.  But, just like I have a tendency to do, I found a way.

While staying at Randy’s those first few weeks, my route to and from work took me past The Texas School for the Blind.  More than once, I patiently waited while teachers helped blind kids cross the street and I felt grateful for not having to grow up blind.

After living in expensive Dallas and making dismally low wages, I was in credit card debt up to my nearsighted eyeballs.  But, I was full of optimism.  My life was on an upswing.  Driving around town, calling on accounts, I often heard a song by the Divinyls titled “Make out Alright.” (http://www.youtube.com/watch?v=GG8ZhzJteFY)  It could have been my theme song. 

Barely a month into my new life, I learned that my kidneys were failing.  I’d known something was wrong because of all the edema (swelling) in my feet, which gradually moved higher until I looked like an overweight guy from the waist down, and a skinny guy from the waist up.  It hurt to walk (more like waddle), but I persevered.

A thin but comfortable layer of denial allowed me to keep from panicking, hundreds of miles from my family and without health insurance until I had worked for Kinko’s three months.  A song by a new artist named Seal titled “Crazy” (http://www.youtube.com/watch?v=EgxpDgSjxkA) gave me a valuable piece of advice.  “We’re never gonna survive unless we go a little crazy.”

To get rid of the edema, the doctor put me on strong diuretics, which made me tired.  The intense summer heat central Texas drained me ever further.  My sales—and income—increased, but I really pushed myself to make it happen.  The easier life I expected wasn’t happening.  Every day, I hid my terror and called on businesses in my territory with polished fake confidence.

I also noticed traffic signals didn’t look as clear as they should have.  For years, my contact lenses wore out and had to be replaced every September.  With money being tight, I told myself I could wait until then if it didn’t get much worse.  It had gotten a little worse.  I discreetly used the copy machines at Kinko’s to enlarge business cards and other printed material I couldn’t quite see well enough to read.

September rolled around and the eye doctor sent me to a retina specialist, who injected yellow dye into a vein and photographed the veins in back of my eyes.  I went home with skin temporarily stained yellow and worried all weekend.  The diabetes had already damaged my kidneys.  Now it looked like it might have hurt my eyes, too.

The following Wednesday, they called me at work.  “You have retinopathy.  If you don’t have laser surgery soon, you could lose all of your vision.”

Even though I was halfway expecting it, it was still a big jolt.  I ran out of my office, jumped in my truck, and drove home to break the news to my parents.  It was time to stop pretending everything was OK.  We decided I would move back to Arkansas and stay with them while I endured whatever was going to be done to save my sight.

On my way home from work one afternoon with the radio on (as usual), I heard a song by a heavy metal band for the first time—“Silent Lucidity” by Queensryche. (http://www.youtube.com/watch?v=LniY0pDQGaE)  It was soothing, like it was just for me, with lyrics like “If you open your mind to me, you won’t rely on open eyes to see.”  The main message of the song was about someone or something watching over you, protecting you in the night.  I guess you could say it was a “God Moment.”  It gave me the first bit of peace I’d known in several weeks.  I had been so distracted listening to the song, I looked up and noticed the light was green.  When had it changed?  The driver behind me never honked their horn, and for that I was grateful.  I continued on my way, trying to concentrate on my driving and the lyrics of the song.

I had a sale and sold most of my furniture and some other things I didn’t need anymore.  My time in Austin had only lasted four months and I hadn’t felt well enough to get to know the place like I wanted.  I knew I had found the place I wanted to stay, even if I didn’t know what I wanted to do with my life.  In a city like Austin, that’s not necessarily a bad thing.  I felt defeated, that so much was left undone.  There are still times when I wonder what my life would have been like if my health had held up and I stayed in Austin.   

I'm (Still) Here Because of Mom

It was probably just a miscalculation.  It makes more sense than the other explanation for the tardiness of my grand entry--my debut, so to speak.  Whatever the reason—mathematical or biological—I was born six weeks after the due date.

I’ve never liked being rushed.

In those days, they didn’t induce labor.  Dad took Mom for a ride on a bumpy road hoping I would take the hint, but it didn’t work.  You can’t rush quality, as I’ve pointed out to my mother on several of my birthdays.  I even held out until a few minutes after midnight, just so it would be a day later.  But I was born on her grandmother’s birthday.  That counts for something, right?

She’s been putting up with odd and willful behavior ever since.

Actually, I was an extremely well-behaved kid until my teens.  I was easily entertained, made good grades, and my teachers never had to yell at me (much).

Then, right after hitting puberty, I was diagnosed with diabetes.  Suddenly, my parents didn’t quite know what they had on their hands.  Still basically a good kid at school, my mother discovered that I had inherited her strong will, which sometimes clashed with hers.

What can I say?  I am my mother’s son.

From her I also got a positive attitude and just enough Cherokee blood for dark blue eyes and skin that tans easily in the sun.  I’ve been told the three make a nice combination.

On the surface, she’s like millions of Southern women from her generation.  She writes Thank You notes by hand and organizes the main food entrees whenever someone at her church dies.

But, she was tough enough to sing to me and my brother when I was four years old while a killer tornado ripped through the town where we lived.  She’d placed us under my parents’ bed, but only her head and shoulders would fit underneath.  There she was, singing to us so we wouldn’t be afraid, while most of her body was left vulnerable to whatever might land on her.  Fortunately, our home was spared.  But, it was my first real hint of the tough survivor beneath the sweet exterior.

Ever the maverick, the nomad, wanderlust took me to Tampa, Kansas City and Dallas.  I was out of college and anxious to experience the world—at least some of the urban U.S.  She stayed in Arkansas and worried about me.  Her little boy was on his own in the big city, an environment she never much cared for.  I had only lived in Austin a few months when the diabetic complications began.  Then I was back with her and my father in their home, terrified of the big, dark question mark that loomed in front of me.

She had to draw up my insulin shots when internal eye hemorrhages made it impossible for me.  She put the drops and ointment in my eye in the first few weeks after I had surgery to remove the blood inside my eye, staring unflinchingly at what must have been a gruesome sight.  She shared my despair and joy as my vision fluctuated.  And that positive attitude never wavered.

A few years later, my kidneys failed, and she was right there beside me; at the training class for new peritoneal dialysis patients; driving the two hours to Tulsa, where I lived, to help me until I regained some strength; and always offering words of encouragement over the phone.

A year later, my parents’ endurance would be put to a big test when I had the kidney/pancreas transplant.  There were a few complications and I ended up spending more than three weeks in the hospital.  They had to watch me struggle and suffer.  At one point I almost died.

But, with their help, I pulled through.  Mom does so much for me and would do much more if my independent nature allowed it.  She sets out to take care of everyone she knows and cares about.  Yes, I got that kind of mother—one who can cook and bakes sweets no one can resist.

She won’t touch a computer, but remembers birthdays, anniversaries, graduations, and every other occasion in the lives of people around her.

Over the years, she’s nursed me back to health more times than I can count.  This past year, she did it again.  This time, it was cancer.  There were times I was nauseous and too frail to make it to the bathroom.  I had to use a plastic container, which she emptied without complaint dozens of times.  When the mouth sores made it impossible for me to eat solid food, she spent hours searching the grocery store for something soft enough.  She had to watch her boy take on the appearance of a frail old man.  The worst part for her, like any mother, was watching helplessly while I suffered.

You eased my suffering more than you’ll ever know, Mom.  It’s no exaggeration when I say I couldn’t have survived this without you.  You gave me life, and you keep helping me hold on to it.

Kidney Transplant, Desperate Housewives Style

I have to laugh out loud sometimes at how Hollywood stumbles across facts like a drunk bull in an antique shop.

The latest example is the character of Susan Delfino (played by Teri Hatcher) on Desperate Housewives (Sunday nights on ABC).  The adorably ditzy Susan experienced kidney failure, earning pity for the likeable character.  And she made it look like a day at the beach.  Sure, she passed out a few times and wound up in the hospital, but there was no nausea, anemia, perpetually itchy skin, or that grey, sickly-looking complexion.  All of these are symptoms caused by imbalances of various toxins, chemicals, and nutrients that occur when the kidneys decide to take a time out.

There was one detail the writers of Desperate Housewives actually exaggerated.  They had poor Susan doing dialysis treatments lasting six hours each, not the usual four.  Hollywood giveth and Hollywood taketh away.  Somehow, she did dialysis 50% longer than most kidney patients, but had 75% more time and energy when not hooked up to the machine and looked 122% better while she was at it.

Within only a few weeks a donor appeared out of the woodwork.  Actually, he appeared from Susan’s past and--like so many of the people her character attracts—is not quite right in the head (though his kidneys are superb).  It turns out he went to high school with her and had been obsessed about her and is only too happy to share a kidney with her to get on her good side—or in his case—noticed at all.  As luck (and Hollywood) would have it, he’s the right blood type.  And he’s a perfect tissue match, which isn’t a guarantee even with the correct blood type.

Having received a kidney from a living non-related donor, I can report that it takes several weeks to approve someone as a donor.  There are dozens of medical tests checking the health of several other parts of the donor’s body, not to mention several vials of blood taken to test for a wide variety of diseases.  The results don’t come back overnight.

Then there’s the psychological testing, which obviously isn’t something the transplant team at Fairview Hospital bother with.  In the real world, they make sure the donor isn’t being paid for the kidney or being coerced into donating it.  They check to make sure the donor isn’t giving up a kidney for any number of mentally unhealthy reasons, such as romantic obsession born out of a teenage crush.

In the end it was Susan, not a doctor, who determined her potential donor wasn’t healthy enough between his ears to spare any other parts.  Discouraged, but never looking any worse from the experience, her wait for a kidney continued.

Enter mentally unstable donor #2: the new bride of equally cuckoo neighbor Paul Young.  She married him while he was serving time in prison for murder, assuming he’d never actually be free.  She somehow missed all the news reports about prison overcrowding.  Little wonder why she’s so messed up.  It turns out the simple-minded Beth was manipulated by her evil mother (also a prison convict) to marry Paul so she could do some sort of harm to him.  Yes, there’s plenty of crazy to go around, but not enough kidneys.

Long story short, Beth commits suicide there at the hospital, with documentation that one of her kidneys will go to Susan Delfino.  How about that?  Crazy Donor #2 Beth is a perfect tissue match and the right blood type too.  Gotta love those odds, especially if you’ve ever been on a transplant waiting list.

Of course, Susan comes through the surgery with flying colors and bounces out of the hospital in record time, looking like she might have had a stressful day at work.  Apparently, the crackerjack transplant team at Fairview Hospital didn’t advise her to stay inside, away from crowds for several weeks after the surgery.  Her immune system would have been reduced to almost zero so it wouldn’t attack Crazy Beth’s kidney.

In the real, non-Hollywood world, the high dose of Prednisone (a steroid anti-rejection drug) a transplant patient takes for several months would have given the lovely Susan acne, a round face, a bloated body, a ravenous appetite, and a very short temper.  Teri would have no doubt spent hours in the makeup chair and I hear those things get uncomfortable after a while.  Awwwww.

It will be interesting to see what other “untransplantlike” things Susan will do in future episodes.  Don’t get me wrong.  I like the show.  It’s one of only a few with interesting plot twists, clever lines, and a nice mix or drama and humor.  There’s quite a bit of talent on there, too.  What’s not to love about Teri Hatcher?  And it’s good that the subject of organ donation is brought to viewers’ attention.   

I just had to add my own little reality check, for the 300 million of us living outside the make-believe world of Hollywood, where many of life’s problems are solved in half an hour (twenty minutes excluding commercial time) and sick people look better than most of us on our best day.