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.