The Ghost of Vision Past: The Pain of Remembering

Over the weekend I attended a conference in Memphis.  It was the first time I’d been there since 2001, when I lived in Little Rock.  Some friends invited me along for an overnighter including a show at the beautifully restored Orpheum Theater, followed by some nightlife fun.  If you like architecture and you get a chance to see a show there, do it!  Even if you’re not interested in the show, it’s worth it.  I don’t get over there often.  It’s at least a five-hour drive from this part of the Ozarks.

It was one of those conferences with “breakout” sessions going on in different meeting rooms.  You look at a schedule and decide which one looks like your best bet or take a break if none appeals to you.  You can mingle in a common area and nibble the finger food set out on a long table.  Sounds simple enough, right?

It was simple for me back when my vision was better.  Now I have to use a high-tech magnifier (it cost $600) to read the schedule and get help finding the room I needed.  Finding a seat wasn’t hard, but seeing Powerpoint presentations was impossible.  Sometimes I could tell what the speaker was was talking about on the screen, other times I couldn’t.  I needed help identifying food set out on the snack table and again during the buffet-style meals.  People were happy to help, but it made me self-conscious to slow down a line of hungry people behind me.  I made it a point to get in line early, not only because view a buffet line as prey, but also so I could find an unoccupied seat without having to roam around a crowded dining room with a plateful of food.

While making polite conversations with others at my table, I also had to identify food, spear it with my fork, and mind my table manners.  At one meal, the salad was overloaded with olives, which I hate.  I had to eat several because they were In my mouth before I knew what they were.  By the end, my food was jumbled up together on the plate and I thought back on the brief phase I went through when I was a kid, when I didn’t want any of the food to touch each other.

But, the biggest and most isolating change that happened when my vision wosened in 2003 was losing the ability to recognize faces and expressions more than a couple of feet away.  Because of that, I can be very alone in a crowd—even when people are extremely warm and friendly, like they were last weekend.

I have an excellent sense of direction, an internal compass that almost never fails.  But, in order for it to work, I need to get a good look at my surroundings.  To get to my room from the elevator, I had to make a couple of sharp turns and it left me disoriented, then frustrated, then angry because I can remember when things were easier.  Sunday morning, I wanted breakfast and remembered the nearest restaurant was across a four-lane street and was buffet-style.  Not worth the risk.  I found a small room on my floor with vending machines.  The one with food was framed in bright lights so I had to lean in and squint even more than I usually do.  This particular machine had a flashing keypad, though.  The bulb didn’t have a short.  It was designed to light up a row at a time in quick succession, giving it the look of a slot machine that paid winners in sweet and salty snacks.  Do they really need to lure people—particularly Americans—to a vending machine with flashing lights? 

I gave up and went back to my room, glad I had snagged a cookie from a table the day before and saved it.

I wanted to look around at the urban landscape of a bigger city, even if we didn’t drive through any particualry interesting parts of it.  I wanted to be able to navigate the common areas without it feeling like an expedition.  I wanted to find the Men’s Room all by myself like a big boy.

Yes, people find me inspiring, and I hope that continues.  I’m comfortable around the house and around the town where I live.  Being in unfamiliar places is more work for me now.  I work harder to see things.  I have to commit things to memory faster.  I come back from a two-day conference exhausted, physically and emotionally—because I can remember when life was much easier.  I was legally blind before, but barely.  I got around with little trouble.  Even my friends occasionally forgot I had vision problems.

Today, I’m starting to feel like myself again.  I’m at the brink of an exciting future that includes speaking engagements, a published memoir, an inspirational web site, a YouTube channel, and probably more income to go with it all.  I’m focusing on that as best I can, letting The Ghost of Accomplishments Future save me from The Ghost of Vision Past.

Savant? Or Just Blind Memory?

Sometimes I forget how hard it is for people with normal vision to remember things.  I don’t see well enough to use a smart phone and the address book in my 2007 model flip phone is as empty as Kim Kardashian’s head.  Sure, it would be nice to be able to store and then find phone numbers in there, but the font size isn’t large enough for me. 

From what I’ve observed, everyone stores everything on their phone now.  Nobody has to actually remember a number.  Nobody, that is, except people like me.  I was reminded of this last Sunday night.  A friend of mine I talk to every two or three weeks was surprised I remembered his number.  We were at my house and I told him I remember numbers I called frequently from several years ago.

“I still remember the number for J C Penny and I worked there back in the 80s,” I bragged.  “Well, and again briefly in the 90s when they built the new one.”  To prove it, I grabbed my cordless land-line phone (yes, I still have one of those) and called the number.  The recorded message was loud enough for both of us to hear with me holding the phone up.

Maybe I’m a savant.  I don’t know.  It’s always been easy for me to remember numbers, even before the vision loss.

These days, it’s easier for me to memorize a number than look  it up.  Most people could do the same thing if they tried.  They just don’t have to.

I’m leery of paying bills online.  But I’ve never heard of anyone hacking into a phone system, so I pay credit card bills that way.  I have quite a few toll-free numbers stored in my head.  I can enter the credit card number without looking, along with the PIN.  If they wouldjn’t change that stupid 3-digit code on the back each time they send a new card, I would make the effort to remember that too.

I remember the numbers to several friends, the renal specialist, ophthalmologist, chiropractor, oncologist, cable company, taxi, my parents (home and cell), the transit office, my landlord, bank (the main branch and the toll-free number to check my balance), my checking account number, and the number for the time and temperature. 

That last one I've had memorized since I was a kid.  On snow days, we called it over and over to make sure the temperature hadn't risen above freezing.

What?  You can’t do that?  Now it’s my turn to feel sorry for you.

There are several other numbers I remember most of, which gets me some interesting wrong places the first time or two I guess.

I’ve heard people say, “I lost my phone and it had all my numbers stored in it.”  You’ll never hear me say, “I lost my head and I had all my numbers stored in it.”  I do, but if I lose it, I won’t be able to talk.

Yesterday I activated a new card from a big box store.  There was a glitch and I had to enter it a second time.  After that, I had it memorized.  If I call it a few more times over the new couple of years, it’ll be stuck in there with the number for J C Penney.

Maybe all the memorization will keep my mind sharp well into old age.  Follow my blog for another 25 years and we’ll find out together!

A Week of Coincidences. Or Are They?

This month is National Donate Life Month.  I promise, I didn’t schedule it for April, but the timing is perfect.  Just yesterday, I gave a speech for a Toastmasters International speech competition about waiting for and recieving a transplant.  I promise, I didn’t schedule the date for that round of the competition, either.

This coming Friday, April 6^th, will be the 14^th anniversary of my kidney/pancreas transplant.  I promise, I didn’t schedule that, either, though it would have been nice if I could have.  That was one of the points I mentioned in my speech—that you never know when “the call” will come when you’re waiting for a transplant.

I talked about my donor, a young man who died in an auto accident.  He’s my hero and I’ll never get to meet him.  But, I made an unwritten agreement with him to take care of his kidney and pancreas, to keep them alive.  In return, he keeps me alive.

As hard as I tried, the kidney only lasted five years.  The speech had to be 5-7 minutes in length, so I didn’t go into that.  Nor did I have time to mention the amazing woman who gave me one of hers that same year.  

I wanted to get them to sign the back of their license to be an organ donor, but I didn’t want to push my luck.

She’s a devout Catholic.  God told her to give me a kidney.  Of this, I am certain.  For the first few years, I had no idea why.  We had never met when she was instructed to do this for me.  How’s that for a miracle?

Once I started writing my memoir, a realization came to me.  Back when I was going through all those harrowing health issues, I asked over and over, “Why me?”  I was never a bully or especially arrogant.  Most people would have told you I was too nice to deserve that.  About halfway through the first draft of the book, I realized this story had to be told in first person by someone with the ability and desire to tell it.

But, I didn’t think actually talking about it to a room full of people would be part of God’s plan.  Wasn’t it enough to write the book, step back, and let people read it?  Apparently, it wasn’t.

Now I’m doing exactly what I was meant to do—writing and speaking.  Believe me, I’m just as (maybe even more) surprised as anyone.  Those who knew me in high school and college can tell you that, aside from being a bit of a smartass, I wasn’t one to draw attention to myself.  Everything I’ve been through has toughened me up, even enough to get over stage fright. 

Fourteen years after getting a second chance at life, I’m feeling more alive than ever.

Three separate events with a common theme converge in one week—National Donate Life Month, my 14^th “re-birthday,” and inspiring a room full of strangers with my story.  It’s not coincidence.  Of that, I’m certain.

Why I Talk About It

This coming weekend, I’ll be competing in a speech competition.  I’ve given this particular speech twice already, with some refinement between the first and second time.  The topic: organ donation—from the viewpoint of someone who was lucky enough to receive one.

Actually, I received two.  Maybe I should have titled this post Why I Talk about Them.  But "it" is my personal experience of being a transplant recipient.

One of the main reasons I started writing my memoir was to raise awareness about diabetes, visual impairment, and organ donation in general and pancreas transplants in particular.  Most people still don’t know one can be transplanted.  Some of them are diabetics who could possibly benefit from one.

While reading a book about how to write a non-fiction book proposal for a publisher or agent, I ran across an interesting bit of advice for building a platform—that all-important built-in audience of potential buyers.  It suggested doing speaking engagements.  That made sense.  It went on to suggest joining Toastmasters to improve your speaking skills so you don’t fall flat on your face at those speaking engagements. 

An organization that could teach me how to be a more dynamic speaker?  That sounded like a good idea.  I joined and started getting comfortable talking about myself for a few minutes at a time in front of a room full of people.

It’s a surreal experience, standing up and speaking in front of a bunch of people with normal vision when you can’t see their faces clearly.  They say public speaking is one of the most common fears people have.  I don’t think they polled legally blind ex-diabetic organ recipient cancer survivors.  After all that, it doesn’t frighten me.  Few things do anymore.  But, like so many things I experience, it’s surreal. 

Fast forward a couple of years to last month, when I spoke about what it’s like to go from being diabetic and doing dialysis to suddenly being free from both.  Later, a few people commented that they were going to have the “talk” with their family to let them know they wanted to be a donor if something happened to them.

My first taste of success in this new realm. 

I had given other speeches about interesting or funny things I’ve experienced.  The one about being a legally blind substitute teacher got plenty of laughs.  The objective was vocal variety, which any substitute (or regular) teacher knows something about.

One speech objective was to use my body.  I talked about the day George H.W. Bush flew into our little airport in 1988 to campaign for president.  I worked at Drake Field at the time and ended up being the one to flag in the last plane before he landed—the one that would be parked closest to his.  It had to be just right.  Airport employees were allowed to be closer to where he was than the general public.  We also got to board Air Force II for a quick look while he was out campaigning.

Then I was ready for my speech about organ donation.  The objective was persuasion.  Not surprisingly, it’s a topic I feel very strongly about.  This was my chance to inspire and motivate.  It brought me full circle to when I first started writing my story.

It’s hard to describe the feeling of fulfilling your purpose in life.  It’s sort of a heady, tingly, warm sensation with a sense of powerful intuition—the kind you know in your gut.  It’s being swept up and carried aloft by it without having to struggle.

I already knew my story was meant to be told in writing.  Talking about it and putting some emotion in my words and voice is a different level of intensity.  This rounds out the picture.  It gives a face—a healthy one—to something still shrouded in mystery by most Americans. 

It will be a larger audience this weekend.  Some of them will be competing against me.  I’m going to do my best, but even if I don’t win the contest, I will have won anyway. 

Cancer Vaccine?

Perfect timing.  I’ve been feeling a sense of relief and accomplishment all day.  It was one year ago today that I had my last chemotherapy treatment.  At Highlands Oncology a patient gets to ring a train bell at the end of their final treatment.  I was so feeble I could barely raise up from the wheelchair enough to pull the cord, but I managed.

I had beat cancer.  But, the most harrowing part of the experience would be in the month to follow.  The nausea, mouth sores and fatigue were the worst then.  It was ironic, but it’s the cumulative nature of chemo.

Today I was watching the local news at noon and they reported a breakthrough on a cancer vaccine.  My day got even better.

They reported that the vaccine would use someone’s own immune system to kill cancer cells.  That part concerned me.  Would an organ transplant patient be able to have this vaccine if it did that?  Then the report went on to name an immunosuppressant (anti-rejection drug) that is actually part of the vaccine.  It’s one that I’ve taken in the past.  So, it sounds like this vaccine might even apply to me and others with a transplant.

Clinical trials are in the early stages, so it may be a few years before anyone knows how effective it might be.  But, it’s good news that gives me hope on the day of this personal milestone.

Art Filtered Through My Eyes

It sounds like the setup of an off-color joke (of which I am a fan).  “A legally blind guy goes to an art museum and . . .”   

A couple of months ago, Alice Walton spent part of her Wal Mart fortune to open Crystal Bridges, a world-class art museum in Bentonville, just a few miles up the road from where I live.  She’s been collecting works by American artists for quite some time and went on a bit of a shopping spree in recent years when she decided Northwest Arkansas deserved an affordable (in this case FREE) place for common folk to be exposed to culture.  This irritated some of the snobs in big cities who said, “We can’t lose our fine art to Arkensaw.”

Others were bothered by the Wal Mart connection.  Don’t worry.  This isn’t a political, class warfare rant.  Though I must say, I love the irony of the Wal Mart fortune buying the portrait of George Washington that appears on the dollar bill.  I’ll never look at my money quite the same way after yesterday.  The fact that it’s in one of the poorest states in the nation makes it that much sweeter.

From the time I was old enough to hold a crayon in my hand it was obvious I had a gift and interest in art.  I wasn’t a jock or particularly good-looking, but I could draw better than the other kids.  Adults told me to treasure that gift.  Later, like most adults, I had to pay bills, which left no time for creativity.  But I majored in Advertising in college, so I was able to take art classes for that.

In the months before and in the year after my kidneys failed, I once again had the time for art.  To my surprise, the skill came back like it had only been a few weeks instead of several years.  Even with reduced eyesight, I could still do it.  In 2001 I was living in Little Rock and took some classes at the Arkansas Arts Center.  My ability actually improved.

Now my vision is worse than it was then, but I still like to look at great art, valuable or not, so I was happy for the opportunity to see it without having to leave hillbilly country to do it.  With all this fine art in our midst, people are going to have to recalculate the relationship between hillbillies and art.

I took my cane and was glad I did.  There were some sculptures in pedestals, small items in glass cases, and some big, fragile pieces of modern art assembled on platforms about a foot off the ground.  It would have been embarrassing, and possibly expensive, to have stumbled onto one of them.  Maybe I could have passed it off as performance art, but I didn’t want to take the chance.  I’m sure I must have confused some of the other visitors who thought I was totally blind.  Anyone who watched long enough would have seen me squint and bend or lean closer for a better look.  I wore a pair of small binoculars around my neck, which I sometimes used to see smaller details.

One nice thing about Crystal Bridges is that people can walk right up to the art as long as they’re eighteen inches from it.  Most of the time, that was close enough for me.  Paintings with only dark colors were problematic.  Those with bold contrasts between light and dark were my favorites. 

As for the lighting, it was pretty good throughout most of the museum.  I’m a big fan of natural light in most situations, but on this sunny day, it was too much glare in rooms that relied heavily on it.  No one else seemed to have a problem, though.  Maybe the next time I go (and there will be a next time) it will be an overcast day and it will make a difference.

The museum’s architecture is part of the experience, but I was out of luck there.  The architect’s scale model was in one area, so I got an idea of how interesting it looks from the outside.  It was in one of the areas where glare bothered me most.  From what I’ve been told and heard on the news, it blends in with the Ozark terrain and makes use of the natural beauty of its surroundings.  It’s fine art, Ozark Mountain style.  That’s how we expect—make that demand--things to be done in this neck of the woods.  You can make improvements on what’s here, but you’d better honor what’s already here. 

With the help of someone reading the small cards to the right of each piece, and the overhead menu at the restaurant, my day at Crystal Bridges was complete.  Sure, my eyes got tired and I realized how out of shape my legs are after walking for over four hours, but I was still able to enjoy it.  As long as I have enough vision to distinguish between light and dark, I’ll do everything I can to look at what artists have created.

That means you don’t have any excuse not to.

A legally blind guy went to an art museum and . . . he was very grateful for the experience.

2011: My Transformation

This year started terrible and gradually improved.  Most years, there are plenty of ups and downs.  If you were to graph how I felt in 2011 and how happy I was, it would look like this:

I had cancer when 2011 began.  January 3^rd I had a chemo treatment followed by a PET scan.  This meant I couldn’t eat for several hours beforehand.  My appetite was almost non-existent anyway.  I’d dropped some weight.  They told me the scan would show the cancer as lighted areas.  I imagined a space photo of the U.S. at night, with the urban areas lighted blobs on a black background.  What I hoped for was no lighted blobs in me.

The room was cold, I took off my shirt and lay down on a cold table and they did the scan.  After getting dressed, I never warmed up again.  By the time my parents drove me to their home over an hour away, I was shivering so much I could barely walk.  I kicked off my shoes and crawled into bed.  A flannel sheet, blanket, and bedspread couldn’t keep me warm.  My mother threw on a few more blankets and my heavy coat.  I still couldn’t stop shaking.

Then I started throwing up.  All I could do was turn my head to the side and throw up into a plastic container she held.  After a while that eased up.  The shivering eased up.  One by one, I shed the layers of covers. 

I went to the den, feeling better, and watched TV.  Then I started getting hot.  We called the clinic to let them know I had a fever of 103.  I pulled off my shirt and dabbed my forehead, neck, and chest with a cold, wet washcloth.  And I made myself drink several tall glasses of water.  I was too frail to get it myself, so I kept my parents going back and forth to the kitchen.  Between that and the medication I had on hand in case of fever, it finally passed several hours later.

Happy New Year to me.

My last chemo treatment was January 25^th.  February was a blur of fatigue, severe mouth sores, and lack of concentration.  A friend mine, herself a 15-year cancer survivor, told me about “chemo brain,” so I knew I wasn’t going crazy. 

There were times when I was so frail my legs literally gave out from under me.

By March, my strength was returning.  The mouth sores finally cleared up and I could eat again, though I still didn’t have much appetite.  I felt strong enough to be on my own at my home.  My parents worried about me going up and down the stairs in this two-story house.  I knew the stairs would help me regain strength faster.  By the end of my second day back, I was able to walk up and down them almost as fast as before the diagnosis.

I tried to get back to writing, but my mind was still too foggy.  Sometimes I was easily distracted by news stories popping up on my e-mail sign-in page to get around to checking e-mail.  I remember thinking, “So this is what it’s like not to have any ambition.”  I’d seen others with an obvious lack of it and wondered what it must be like.

As spring brought new life back to the world around me, I came back to life, too.  I made my first forays back to the gym, which increased my appetite, which helped me put on weight.  Unlike recovering from other health issues in the past, my appetite, weight, and energy level returned in lockstep with each other.

My hair and beard made a comeback as well.  After a few weeks, I didn’t cringe when I saw myself in the mirror.  The bottom half of my face no longer looked like a twelve-year old boy while the top half looked like an old man.  The hair that returned to my head was soft as a baby’s—until the first time it was cut.  All the stories I heard about hair growing back a different color or more/less curly didn’t happen to me.

By July, I had gained back all but a couple of pounds of the weight I lost, but this time it was leaner.  I could lift almost as much weight and my appetite was like it had been in my late teens/early twenties—and so was my metabolism.  I ate all I wanted and none of it went to my gut.  One afternoon, I stood in front of a mirror and laughed because, at 47, I was in the best shape of my life and only a few months after cancer.

And by July, I was able to write again.  In fact, I did some of my best writing in the summer and with more focus than I’d had in a few years.

That cancer was a gift.  It knocked me down and let me build myself back better—at a slow, manageable pace.  It didn’t kill me, and it definitely made me stronger.

In September, I observed my 20^th “blindaversary.”  I thought about my life in Austin in 1991 and wondered, as I’ve often done, about what life would have been like if my health hadn’t forced me to move.  Back then, I had no idea what I wanted to be when I grew up, but knew it was about time to decide.  Then I thought about all I’ve done since then. 

It blew my mind.

If only I’d known back then that all the moving and false starts were giving me the variety of experiences I needed to write about all kinds of characters in all kinds of situations.

If only I’d known back then what I was capable of. 

I took stock of myself this summer and realized that, somehow, I’d turned out to be a much better man than I aspired to be twenty years ago.  That really blew my mind.

A fun vacation in Philadelphia in November was a nice breather before diving back into the strange reality show/sitcom/Discovery Channel rollercoaster that is my life.  All the lab tests report that I’m cancer-free and the transplanted organs are doing great.

After struggling to get a couple of web sites up and going, I finally decided to hire some with computer and internet expertise surpassing my own (which could be just about anybody, really).  It’s exciting to see one of them taking shape, on the verge of promoting and with luck, generating income.  I also get to write and this site will help me sell the offbeat humor I write.

The other site will be ready early in 2012.  I’m not exaggerating when I say it’s my purpose in life.  It will help people, inspire people, and build a sense of community among people who have also been through some intense, life-altering events.  I’m improving my public speaking skills so I can tell my story and promote that site.  It’s exciting to be on the verge of all this at the end of one of the most intense, life-changing years of my life.