Blindiversary

September 25, 1991

I’d been in Austin since the beginning of June, working as an outside sales rep.  My territory was southwest Austin--everything south of the Colorado River and west of I-35.  That was the part of town where the Hill Country begins to rise up from the more flat Texas terrain.

“You have diabetic retinopathy,” a retina specialist’s nurse told me on the phone.  “If you don’t get laser treatment right away you could lose all your vision.”

It was what I half expected to hear and what I feared hearing the most.  It knocked the wind out of me.  I stammered out a few questions.  Around me, co-workers buzzed around on what was a typical Wednesday for them.

Air.  I needed air.  The news propelled me from my office to the alley behind the building.  The glaring sun, the tears in my eyes, and what turned out to be a serious problem all conspired to turn my surroundings into a runny watercolor painting.

I needed to be alone with this news.  I needed to get home.  It wasn’t far to my truck and I drove home on autopilot, wondering if I would be able to drive in the months ahead.  Once I was home, I called the retina specialist’s office again and asked the nurse more questions.  She was kind and compassionate.  She spoke in the perfect tone of voice for someone in obvious despair.

“I don’t know what to do,” I told her.  “WHAT AM I GOING TO DO?”

“I can’t answer that for you,” she said gently and I knew she wished she could tell me the right thing to do.

Next, I called my parents in Arkansas, who were waiting to hear what the report was.  By this point, my brave face was history.  Nothing had ever terrified me so much.  My mother wanted to reach through the phone and hug me.  Her little (well, twenty-seven year old) boy was hundreds of miles away and in trouble.

“Maybe you should come back here and we’ll face this together,” she finally said.

It was the thing I needed most.  It was the thing I feared most.  The prospect of losing my independence, possibly my sight, my income, and facing God-only-knew what kind of gruesome eye treatments loomed in front of me like an 18-wheeler out of control on an icy road.

Over the next several days, I packed, sold things, threw things away, tried to do a few final fun things in Austin, and worked my final days at what would end up being my last full-time job until 2004.

“They’re doing some great things with eye stuff down in San Antonio,” my boss told me.  “You should check into that.”  She was trying to be encouraging, trying to help me find a solution without rearranging my whole life.

But I needed my family.  It would mean leaving a city that I absolutely loved—a bigger version of the funky college town where I grew up, but in Texas.  It would mean going from calling on corporate accounts most of the day, talking to dozens of people in person or on the phone.  It would mean giving up the freedom of driving around without anyone looking over my shoulder while I did what I was good at—sales.  It would mean staying with my parents at the edge of a small town and having to rely on them for everything.

I was optimistic.  The laser treatments would fix the problem.  I might lose some vision but I’d figure out a way to survive, maybe even thrive.  It was a good thing I didn’t know exactly how bad things would get before stabilizing.  The eye hemorrhages.  The surgeries to clear the blood out of my eye.  The frustration that crossed over into rage.

My vision was stable for several years, with acuity of barely legally blind.  I started receiving Social Security and Medicare.  My sight was stable for the next several years while I faced other health issues.  Life-threatening situations at times complicated by my reduced vision.  Other times, having been toughened up by the experience, it might have helped me deal with what lay ahead.  By the time those scarier situations came along, I’d already learned how to make things work for myself.  It was just a matter of figuring out a new method of going about things.

My sight worsened in 2003.  It wasn’t supposed to happen, but that’s another story.  It’s been more of a struggle since then.  A contact lens in my right eye and tinted prescription glasses for my left have improved how well I see to a level it hasn’t been in over eight years.

Now I look ahead the next twenty years.  I pay attention to all the news about medical breakthroughs regarding vision, especially the retina.  I’m encouraged by stem cell therapy and the development of a bionic retina.  After all my eyes have been through, I’m not afraid to try something promising that might help.

I don’t know what the world in 2031 will look like—but I suspect I’ll be able to see it even more clearly than I do today.

Eight Years With Her Kidney

This post is a couple of weeks late.  I was in a funk for a few weeks, feeling pretty overwhelmed by how fast the publishing industry is changing and all the stuff a writer has to do these days to self-promote.  You’d think someone with a degree in advertising wouldn’t be bothered by this, but it’s all online these days.  A visually-impaired, right-brained artistic type can be intimidated pretty quickly by it all.  Worst of all, it can make me feel pretty stupid and inadequate.

But, I’m coming to terms (again) with all that and moving forward (again) at the pace of a snail—one that can’t see where it’s going.

I was also overwhelmed by life in general.  Who?  Me?  If that surprises you, carefully read the subtitle of my blog again.  Just saying it is a mouthful.  Living it is a bit more challenging than that.  I try not to complain about it, but there are times when it’s every bit as hard to do as it sounds.  The problem was, I allowed myself to focus more on how hard it is for me and ended up throwing myself a big ol’ pity party--complete with balloons, a live band (playing only sad songs, of course), a sad clown, and games like Pin the Fail On the Writer.

The other day, I located the Live Strong bracelet my Aunt Judy got for me when I had cancer and have started wearing it again.  Not only does it remind me of how much of stronger I am after surviving that, but it serves as a rubber band I can use to snap my wrist when a negative thought overstays its welcome.  It’s working and I don’t have welts on my wrist, either.

Part of the blues was due to September being a minefield of unpleasant anniversaries.  I’ll spare you the list of disappointments and traumatic events.  Even as a kid, I used to get wistful in September, missing summer and already discontent with the still-new school year.

But, there is one very happy even that took place in this otherwise intense month.  On the 4^th I celebrated eight years with my kidney Connie gave me.  This was one of the rare years when I got to actually spend part of the day with her.  I took her and my parents to lunch at Red Lobster.  I had the coconut shrimp—two great tastes that go great together.  Whoever came up with coconut shrimp is a genius.

As you can imagine, having a live donor is a very different experience than a transplant from a deceased donor.  I know this because my pancreas and first kidney came from a young man who died in a car accident.  There are so many questions about him I wish I could have answered.  That isn’t the case with Connie, who had us laughing at stories about her granddaughter born last year, now at a very cute and sometimes challenging age.  I hope she’s proud of her grandma someday.  She has plenty of reason to be.

Most people who have known me for the past several years will tell you I’m a survivor.  That I’m at times feisty, stubborn, sassy, tenacious, optimistic, driven, ambitious, and creative.  It was that way before 2003.  I may have received a boost in those qualities when I got Connie’s kidney, because all those terms can be used to describe her as well.  Unlike with the pancreas and first kidney transplant, I never had to wonder if part of the donor’s personality was asserting itself in my behavior.

Thank you, Connie.  I’m doing all I can to make you proud of me.  (Not that it was ever a condition of the gift).  I need to remember God wanted you to give me this kidney.  If it’s God’s will, my memoir will be published.

Seeing Connie again has given me the nudge (shove, fire lit under my butt . . . ) to renew my efforts at getting my memoir published.  I have an unusual and inspiring story to tell.  I’ve lived with my odd situation for so long now that I sometimes forget that.  Sometimes I forget (and other times I’m only too aware) that not everyone is a legally blind former diabetic writer with a transplanted kidney and pancreas (from two different people) living in a quirky college town.  Oh yeah, and now I can say cancer survivor, too.  One or two people might be interested in hearing me speak about it.  With any luck, a few more will be interested in reading about it, too.

My YouTube Debut

Last year, I joined Toastmasters as suggested by a book on how to write a non-fiction book proposal.  The manuscript for my memoir has been complete for quite some time, but it takes an impressive proposal to impress agents and editors—especially the ones in New York.  Part of that means building a platform.  One way to do that is public speaking. 

Back in 1998, I discovered I no longer feared speaking in front of a live audience when people started doing fund-raising events to raise money for my kidney/pancreas transplant.  I found myself thanking those in attendance, or speaking to the congregation at the Methodist church my parents attend, and even doing a brief interview on Channel 5 News.  Like it or not, I was in the public eye and had to sound intelligent.  It turned out to be easier than I ever imagined it would be.

When the cancer let itself be known and I started chemo, I had to stop doing everything I once enjoyed, including Toastmasters.  Several weeks ago, I decided it was time to get back to it and wanted to start out with a speech explaining my long absence.  So, here it is: my YouTube debut.  In the speech I mention how the chemo changed my voice, but it doesn’t sound different in the video.  I’m not sure how that happened, because it is more raspy and hoarse-sounding.  I’ve grown accustomed to it and even like it now.

Remember, I’m still polishing my speaking skills.  Listening to myself, I hear a bit more of a Southern accent than I’d like to have.  Overall, it’s not bad for someone who had been away from speaking for several months.

JimFairbanks July 20, 2011 Toastmasters

Life of the Party

Last Friday I attended a party at a local bar for people who went to high school here.  My family moved away midway through my junior year, but someone I knew from the local high school is a friend on Facebook.  She invited me and I decided to force myself to get out of the house and go, heat wave or no heat wave.

The bar is on Dickson Street, only a few blocks from where I live.  It was somewhat easier to see where I was going with my new glasses, but I took my folded up cane just in case.  I was anxious to find out how much better I could navigate a crowded bar—and to see a few people I haven’t seen in 25-30 years.

But they would have to see me first.

The ones I’ve reconnected with on Facebook would probably be able to recognize me from my photo on there.  There’s no trace left of the skinny, wide-eyed boy with shaggy, wavy blond hair in the helmet-head style of the late 70s and early 80s.  Of course, there would be people from several different eras there, not just my class.  It occurred to me that I might be one of the oldest ones there, which might make me feel even older than being there visually impaired with a cane would.

So, I was prepared for the possibility of not knowing most of the others.  But, we’d have a bond—we’re “natives” in a booming city where transplants easily outnumber hometown folk.  Just having a few dozen of us in one place is noteworthy in itself.

After buying a bottle of Michelob, I made my way to the back patio, where we were supposed to gather.  Instantly, my self-confidence vanished.  Poof!  Just like that.  It was gone faster than an ice cube on the hot pavement in front of the bar.

Groups of people laughed and talked in small groups all around me.  Now and then, women squealed upon recognizing old classmates.  I overheard a cluster of women near me and it turned out they were from the Class of ’75.  This bolstered my confidence a bit, knowing I was probably somewhere in the middle, age-wise.

I stood there, looking around and listening intently to more than one conversation at once and hoping someone would recognize me and speak to me.  It wasn’t as if they all knew each other.  People who graduated in 2008 are old enough to drink now.  There could have been at least a forty year span of former FHSers there.

Standing there in the middle of all that social flow, like a rock in a stream, made me self-conscious.  I moved to the edge of the crowd and discovered some plastic patio chairs.  Perfect.  I could sit there, relax, be out of the way, and observe without being too conspicuous.  I reminded myself I wasn’t as invisible as I felt and that everyone else could see me better than I could see them—something I’ve grown accustomed to, but may never be entirely comfortable with.

One thing I had to keep in mind was that I only went to school a year and a half with the kids who were from the other junior high across town, which decreased the odds of being recognized.  I had four and a half years with kids from my junior high from different elementary schools.  That wasn’t a very big window of opportunity.

“You have the right idea,” a female voice said.  I followed the direction it came from, not sure if she was talking to me.  She must have seen the confused look on my face.  “The chair,” she continued. 

“Oh, yeah,” I said.  “Pull up a chair.”

Her name was Patty, from the Class of ’77.

“Class of ’82,” I said, not bothering to explain the last part of my high school experience was a few counties away.

“You’re just a baby.”

Sure, I knew better than that, but I liked hearing it.  It was nice having someone to chat with.  I dropped a few names of older kids from my old neighborhood she might have known.  None were familiar to her.  It was a fairly large school even back in the 70s.

Now and then, she commented on people around us and I explained I don’t see well.  The cane was folded up in my lap, but I leaned over it like it might try to fly away.

“The men just get more handsome with age,” she said.  OK, she could keep talking like that and it would suit me just fine.  No doubt she was referring mostly to the men she’d known in high school.  Or maybe she was referring to men in general.

At one point, she indicated everyone else wore name tags with the school colors of the junior high they’d attended prior to high school. 

“Where are they handing them out?” I asked.

She described a woman in the distance, but I couldn’t see her.  Maybe a name tag would have helped people recognize me.  There just had to be someone else there from “my” era.  My beer was almost gone and I wasn’t sure how much longer I was going to stay.  The heat had made me sweat it out as fast as I’d been drinking it, so I didn’t get help in the self-assurance department I would have gotten on a cooler day.  Because I have a transplanted pancreas, I’m limited to one drink a week.

Patty excused herself and went on her way.  Either she was leaving, saw someone she knew, or was totally bored by me.  Stop it, Jim!  I wish I didn’t beat myself up like that.

I finished my beer and made my way back to the front door.  Even though I was headed east, away from the sun, it was harder for me to see than when I’d arrived.  Everything was bathed in yellow-orange glare, which made it all look flat and two-dimensional, like a photograph.  It’s ironic that the worst time of day for my vision is just before the best time.  At dusk, when the sun slips behind the hills, I see with amazing clarity.  This time of year, it stays light quite a while after the sun makes an exit.  It’s why I gladly endure the heat.

After bumping into a pole just outside the bar, I unfolded the cane and used it to help me get home.  People offered help when I crossed a street with a traffic light, thinking I had no vision at all.  As much as this town has grown since I went to high school here, it still has the polite feel of a smaller place.

On the way home, I thought of how little credit I’d given the other people at the patio.  This was at George’s Majestic Lounge, the oldest—and maybe the friendliest—bar in Arkansas.  They would have spoken to me if I’d spoken first, especially if I had remembered to smile.

Then I remembered how much more self-confident I was when I moved back from Florida twenty-four years ago.  After being around so many Northeasterners who’d landed there, I had a tougher skin.  If I tried to talk to someone at a party or a bar and encountered “attitude,” I almost always let it roll off my back, not letting it affect my evening or how I felt about myself the least bit.

Of course, I could see fine then.

Still, I need to get back to that level of confidence.  People can’t just glance at me and have any idea of what I’ve been through.  There are few who aren’t fascinated and in awe of it.  This isn’t a place where people are callous and rude to strangers, especially the disabled ones.

There may not be a trace of that skinny, wide-eyed high school boy left, but the more athletic, sophisticated one from 1987 is there just beneath the surface—but with more maturity and a story to tell.

Life In 3-D

I’ve had the glasses for two weeks now and I’m still getting used to them.  They are bifocal and the line drives me crazy at times.  I can’t use them at the computer but that’s OK.

The first week I had them, it seemed like inanimate objects jumped out at me.  Walking through the big room at the health club, the exercise machines lunged at me with their various handles, seats, and weight bars sticking out.  Anyone paying close attention would have thought I had a nervous condition.  That was when I realized what’s different now.

Now I have more depth perception.  I hadn’t noticed it had decreased.  Now that it’s back, I feel like I’m roaming around inside a 3-D movie.

The adjustment period comes as no surprise.  Adjustment periods have become a regular occurrence in my life.  It’s nice to see more detail on the ground when I’m walking.  It’s a relief to recognize faces and facial expressions at a greater distance.  I still don’t see well and it isn’t what it was as the beginning of 2003.  But it’s an improvement and I’ll take whatever I can get.

The glasses will do fine for now.  But, I’m still optimistic about what the future holds in medicine.  Will I one day have a retina transplant?  Will stem cells repair the damaged parts of my eyes?  Maybe it will be a bionic retina that restores my vision.  All of those things are being tested and perfected.  Maybe there’s a “dark horse candidate” I’m not aware of that will come to my rescue.

One thing is for certain.  This 3-D movie that has become my life will continue to have plot twists and surprises. 

Expanding My Horizons, Literally

On Friday I picked up my new pair of prescription glasses.  I’m gradually working up to wearing them all day.  There’s a noticeable difference in how well I can see with them on.

They’re tinted, which cuts down on glare inside as well as outside.  My eyes are just that sensitive to glare.  A couple of years ago, I started wearing sunglasses when using the computer.  I’ll probably have to continue doing that, because the new glasses are bifocal and the line is right where I look when I’m writing.  That’s OK, I use Zoomtext, a magnifier program, and would still need it even with the glasses.

Yes, even with correction, I still can’t see normal.  But, I can see better than I have in eight years.  I’m starting to walk with a little more confidence.  It’s easier to read numbers on my cell phone.  Who knows?  Maybe I’ll even get to start using the address book instead of keeping phone numbers in my head.  A little less clutter in there would be a good thing.

The little bubble of isolation I’ve lived in since 2003 has grown larger, encompassing people at a greater distance.  I can see faces, expressions, and recognize people that last week would have been beyond the veil of blurriness I’ve come to know and despise.  Social situations have sometimes been painful and awkward for me since my vision unexpectedly worsened in 2003.  It’s just harder to connect with people when you can’t make eye contact at a distance more than two or three feet.  It has made me feel alone in a crowd more often than I care to think about.

Several times today, I lowered the glasses just enough to peer over them, to measure the difference in what I can see.  My vision isn’t quite at the pre-2003 level, but it’s improved. 

So, this marks a new era in the never-ending, constantly-changing saga of Jim’s Vision.  Now, I’ll spend the next several weeks (or months) getting accustomed, once again, to a different level of eyesight.  This time, it’s an improvement, so the adjustment period will be full of positive discoveries and surprises.

I always love it when my world expands.

Next on the ‘to do’ list: shopping for a car and planning that cross-country road trip to the west coast.

Just kidding. J

A Bittersweet Symphony--That's Life

A few minutes ago, I was brought back to peace by a song I heard on Pandora.  In my book, I mention several times when I heard a song at a low point in my life and it turned me around or even lifted me up.  Maybe I should make a playlist on my computer of all the Top 40/Pop/Rock songs that have inspired me or spoken to me in a meaningful way.

It’s been a tough week.  That’s why I’m a bit late in making a post.  On Monday, I had a much-anticipated appointment with an eye surgeon about a fairly new procedure that would implant a lens into my right eye, the one that was severely injured eighteen months ago.  At the initial exam a couple of weeks ago, an assistant held something in front of my eye and I could read the 20/100 line.

I know that doesn’t sound very good to most people, but that’s better than that eye has seen in almost twenty years.  My hopes soared, in spite of the little voice in my head warning me not to get my expectations too high.

The surgeon had serious doubts that the procedure would help and that there was a high risk of it failing bad enough to lose all the sight in that eye.  He looked into my eye and described the damage that occurred in 2003, when my vision got much worse.  It reminded me, once again, of how much easier my life had been before then, even with 20/200 vision.  It was easy to walk around, recognize faces, read, and so much more.  Most people couldn't tell just by observing me that I had any vision problem at all.

Since 2003, I have to struggle on a daily basis.  Now and then, the struggle just gets to be too much.  I let my mind travel to dark places, like despair.  As much as I have to deal with, I give myself permission to go there when the circumstances lead me there.  But it’s a temporary visa, with a very short expiration date.  “You don’t have to go home (the status quo) but you can’t stay here.”

The doctor wants me to try a pair of glasses that will help my vision.  I have mixed feeling about this.  Until I was about fourteen, I wore Coke bottle thick glasses due to being severely nearsighted.  Without correction, my vision was much worse than what I have now.  But, kids can be cruel, and they were.  I was relieved to finally get contacts and the ugly duckling story became a part of my biography.

The glasses I’m going to get won’t be nearly as thick as those monstrosities I wore in the 1970s.  And they’ll be tinted.  When I used the lenses in the doctor’s office, I could see faces at more of a distance.  That alone is reason enough to try them.

My spirits have gradually refilled with helium this week, slowly rising, defying the heavy gravity weighing them down earlier.

And today, I heard a song from the late 90s.  I liked it well enough at the time it was a hit, but didn’t pay particular attention to it.  In 2000, I caught the movie Cruel Intentions on HBO.  It’s basically the same plot as Dangerous Liaisons but set in a modern-day New York prep school. 

Spoiler alert: At the end of the movie, the good character, who was the intended victim of two mean characters, is triumphant.  Not only is she unscathed, but happy, and best of all—at peace.  In the final scene she's driving away, suggesting she's leaving all the pain behind her.  The song Bittersweet Symphony is playing.  Since then, whenever I hear it, it makes me think of good overcoming evil, or the peace that comes after overcoming anything bad.  I hope you listen to it and remember it when you’re on your way to recovering from one of life’s tough spots.

I haven't given up on the notion of some medical procedure improving my vision one day.  That day just hasn't arrived--yet.  But I have faith that it will happen.  Something good will happen and I'll triumph over the loss.  Until then, I can still be at peace.