Friday, January 14, 2011

Blindness

 This is my son Brian on his 20th birthday. He spent it with friends at the river in our backyard.

Brian is well, the taller, skinnier,anglo guy in the pic. Also? You wouldn't know it by looking, but he is the one with partial vision.

Partial vision, being the technical term. My son can see some shapes and hues. With glasses he is still legally blind. But with medical contacts (which reshape his cornea) he is partially sighted. He wears these contacts minimally. A few hours a day at the most. They hurt.

Sight loss can affect anyone. While it may cause some real problems, it in no way makes the visually impaired a victim. Brian is one example- of many- with legal blindness, blindness or partial vision who live full, active lives.

January is National Glaucoma Awareness Month...and while Brian does not have glaucoma. He does have keratakonous. So I thought I would take this time to share a little of Brian's journey into this world of limited vision..so far.

 Brian left home at the age of 16 to attend the Texas Academy of Math and Science at the University of North Texas. On his first semester home, he complained of headaches and a scratch in his eye. We did not think much of it. He had severe allergies and had done fine on his eye-chart in his physical not 4 months earlier. We gave him allergy meds and sent him back to school.

The following summer Brian returned to Bandera and worked at a biomedical engineering lab in San Antonio. At the end of the summer, he received his drivers license. He still complained of a scratch in his eye. But we could find nothing.

Brian graduated from TAMS, complaining his eyes were tired, but we all assumed it was too much late-night studying. Then? He went to renew his license shortly after his 18th birthday. I received a call.

Mom..I can't pass the vision screening. Angee (his girlfriend) is taking me to get glasses and then I'll try again.

We chat briefly..and then the phone rings.

Mrs. Bates..uhm..this is Angee. We're at the office..and well..it's not good. Here you talk to the optometrist..and by the way. He's a REAL JERK. He's yelling at Brian in the waiting room and everything.

I wait for this optometrist. Angee is not one to over-exaggerate..and I am still trying to process what is happening...and she is right. This guy is a real piece of work.

Mrs. Bates?! Are you this boy's mother?!  Have you EVER taken this boy to have his eyes tested?! I am testing him..and he is blind. He has keratakonous. Do you know what that is?! You need to take care of him or he is going to be at the Lighthouse for the Blind...and then I just here blah, blah, blah, blah, blah.

My mind races. Is that bad? Lighthouse for the Blind..and hey..wait a minute. We took him regularly when he was younger...and where is my son now?..and why is this man yelling at us? God..let me talk to Brian. I want to know if he is okay. ..and guilt. Brian TOLD us something was wrong.

Angee gets back on the phone. 

Just leave.I tell her. Get Brian and leave. We will schedule an appointment with an opthomologist, but you guys don't need to be there. 

No..she says.Brian wants to stay. He says the guys a jerk but he needs to hear what he says. I'll call you when we're done.

and she hangs up.

I call  Big B..He is already halfway home. I call my mom since she lives near the office the kiddoes are at. (I am still over an hour away). She talks to Angee and they agree to meet.

A few hours later my mom and Brian call. They went to another office for a second opinion. This doc says he understands the first optometrists concern but to please disregard the panic. He is a bit excitable sometimes.(now if THAT wasn't an understatement) Still..a follow up with an ophthalmologist would be advised.

A few days later we are at the University Health System for an appointment. Several tests are run on machines that are NOT EVEN AVAILABLE at the optometrist..and in the end. The jerk optometrist was right. Brian has keratakonous. Now what?

Brian is referred to a keratakonous specialist..and guess what? The doc has keratakonous himself!

Brian and Dr. Z spend a lot of time discussing possibilities..and decide, for a while..to leave things alone. Glasses help his vision and they will revisit medical contacts down the line, if necessary. Because..after all..they hurt. Dr. Z asks what Brian is studying..and encourages him to keep maintaining his lifestyle and pursuing his dreams. After all..look at me, says Dr. Z, I'm still practicing after all these years! (He is an older gentlemen)

So Brian gets his first apartment in Austin where he starts UT's School of Engineering. He learns the bus routes..and crashes on his bike. A lot. But Brian is happy.

That first Christmas Angee drives Brian to his follow up with Dr. Z. You know..says Brian, casually, my glasses really don't help much. He and Angee report that Dr. Z agrees. His eyes are getting worse..but neither Brian or Dr. Z want to try contacts yet.

Then? Summer. Brian is walking up to and squinting at EVERYTHING. I insist on going to this appointment. He makes me promise not to get too worked up. I promise.

Holy Moly. As he reads the eye-chart (WITH GLASSES ON!)with his first eye. He says..Hmm..yeah..let's try another line. Next line up.(Big Grin) How about another line? The woman giving him the screening skips a few lines. Yup.says Brian,Just what I thought. I propose that there are probably some letters there. 


I see the slight panic on this nurse. She checks his chart and with a sigh of relief says

Oh..keratakonous..you're one of Dr. Z's. She skips straight to the one big letter at the top. And Brian with another big grin says...yeah..that would be a letter too.

I remember that I promised I wouldn't over-react.

Really Brian? I laugh..That was quite sad.

He shrugs.

I am relieved to discover that on his other eye -his good eye- Brian can still read the top 3 lines, sort-of.

Brian meets with Dr. Z..they agree that the time for contacts is now. I watch as he teaches Brian how to put them in..and gives him a plunger (YES..a plunger) to remove the contacts. I watch Brian's tears of pain. I hold back my own tears.Why? I wonder..does there have to be so much pain.

The following year Brian and Angee share an apartment. Brian invests in some good sunglasses(because the light hurts his eyes..especially if he has his contacts on)  and a more user friendly computer keyboard (that allows him to make things really big on a screen). Brian and Angee agree on a bottom floor apartment so Brian will not have to navigate steps. Over the next year and a 1/2 they develop a lifestyle for themselves. Angee works with Brian not to make faces when he is trying to see. They develop a way of communicating things..like you're shoes are backwards or describing things on a t.v. screen discreetly so others don't know. They ski, they travel, they work, they study, they play.

Yesterday, Brian and Angee were visiting one last time before returning to Austin for the Spring semester. Brian mentions that when his good eye gets worse..he will probably need a cane. We touch on the possibility of a corneal transplant. But when would be a good time?

Apparently..never. Because the kiddo graduates this Spring with his BA in electrical engineering!!!..and hopefully, will be accepted to grad school in the Fall. Essentially Brian believes he is too busy for such a thing as a corneal transplant. Angee suggests scheduling a time for this between their "life plans". Brian will meet with Dr. Z again during Spring Break.( I suspect Dr. Z would like some input on this planning of theirs.)

Somehow our discussion turns to how many authors of The Great Books of Western Thought...were blind.

As we perused The Great Books Collection we found more and more. So I thought I would share the list we compiled here today:

  Milton, Galileo, Homer, Huxley..

and then we got sidetracked by the French artists...Monet and Degas.

Then just the list in general (other than the obvious Louis Braille and Helen Keller) There was Franklin Roosevelt, Harriet Tubman, Joseph Pulitzer, Handel..and many, many more.

So there you have it folks. The sky's the limit.

I am so grateful for my son Brian. I am grateful for his girlfriend Angee, who helps him develop a lifestyle that allows them both to live fully. I am grateful for the strong support of friends he has, that truly enjoy Brian for who he is.

A brilliant, goofy and awesome young man.



4 comments:

Mark said...

Amazing! You've raised some strong children.
I want to be a Mom just like you when I grow up.
Your Friend, m.

grillledcheesechic said...

mark..I follow your blog..I think you are a Mom just like me;)

Sardine Mama said...

We all love Brian. Luckily, since your other two boys are currently at my house, we love them, too. Don't feel guilty about anything, Cheesy Girl. He told you but what were you to automatically assume? That he was going blind? When Jules said, "Hey Mom - I can't hear out of my right ear..." I helpfully said, "Of course you can...don't be silly." So see? You are still Mom of the Year. Or maybe Mark is. Or maybe it's a tie.

Karla said...

Thank you for sharing your story! Just this morning, I was wondering if my 16 year old daughter will live with us forever. She suffers from Intracranial Hypertension which can cause blindness. She wants to be an archeologist. I hesitated to encourage that career choice, but you've inspired me to say "Go for it!" I wish you all the best!