Talking About Health; Why Health Communication Matters

What I saw on the last day I could see

May 3, 2016

Well, you may have heard people talk about–at least in the movies or on TV–what they were doing on a particular day before something significant happened to them or something important happened in the world, such as the day that JFK was shot. Well, I know what I was doing on the last day I could see…normally in terms of what was normal for me [I have worn corrective vision glasses since I was elementary school age]. I have beautiful pictures of that day. It was a lovely fall day–Friday, October 12, 2007– and together with my husband, we took a trip to see Frank Lloyd Wright’s ‘Falling Water’ estate.

It had been under construction with a large renovation undertaken for the ‘sagging’ decks overlooking the water. We set out in my Firebird, a treat to myself when I was promoted to Full Professor at the University of Georgia.

We purchased tickets allowing us full access to the home and grounds–before normal park hours. So we captured its wonder both inside and out.

Walking the grounds and imagining both the genius of the architect who designed the home and the serenity it would bring to live within its walls was a calming experience.

What is it that they say? –the calm before the storm….

Bono and me…my orange lenses are not a fashion statement

May 1, 2016

A new identity. One with which I share something in common with Bono, tho it would take years before I would realize that. After more medical tests than I could keep track of, and literally pictures of my eyes that looked like perhaps all that testing was making them bleed, the ophthalmologists finally did the medical equivalent–figuratively speaking–of throwing up their hands and diagnosed the cause of my sudden loss of sight and my dead optic nerve as “idiopathic.” Then the head of the team that had been leading the poking and prodding said, “I am scheduling an appointment for you with our low vision specialist.” “What?” “Well, yes, there is kind of a whole industry–she can explain it to you.” And he was off with a trail of others in his wake. And I was left to wonder what more tests were coming my way. And to think, ‘like my experience over these past weeks hasn’t been part of…a whole industry…to use his phrase?’

My first appointment with the low vision specialist took hours. There truly are many devices and many many many questions and some, yes, eye exams that go along with figuring out what ‘aids’ might be offered to assist those of us with low vision. On that particular first day, the real life-changing event came when I was handed a large ‘key chain’ like collection of lenses of many colors. The specialist asked me to look through the one that I jokingly said, “Oh, you want me to look through rose-colored glasses?” Get it? At any rate, when I did and looked again at the laminated card she handed me, there was nothing. “Anything?” she asked. “Not really.” Silence. “Well, how about if you take the pile and go ahead and look through them.” So I did. And…what to my wondering eyes did appear but a sharper image when I held up the brightly colored hunter orange lens… Yeah. Auburn hair and bright orange…there is a color combination you want to recommend. Sigh.

All I can say when people ask me to describe it is to compare it to putting on the glasses you wear–if you do–to deal with bright sun glaring off the snow to go sledding or skiing. Those of you who use such glasses know what I mean. And that is really the closest thing I can think of to share what happens when I put on glasses that have been tinted that delightful orange color corrected to my prescription. No, It does nothing for the dead optic nerve. But somehow, for that central vision in the right eye, it makes the contrast sharper…

And so, when I read that Bono finally revealed–after 20 years [see, I am not taking that long to share…] that he wears orange specs due to his glaucoma [http://www.theguardian.com/music/2014/oct/17/bono-glaucoma-20-years-u2-dark-glasses], I felt some real kinship. And when he says, ” “You’re not going to get this out of your head now and you will be saying, ‘Ah, poor old blind Bono’”–I felt particularly connected to him and his experiences…

I’m back… Living with low vision

April 30, 2016

It has been awhile…. I gave posting a low priority as I learned to deal more and more with a diagnosis of low vision. Never heard of it? Me either. Until I was diagnosed with it. Over the coming months, I will share how asking questions, ranging from my human resources’ representative at work to all kinds of eye doctors and finally a low vision specialist, attending low vision training with a representative from the Pennsylvania Office for the Blind, and coping with endless internal debates regarding my identity and life goals unfolded. For today, I will recall the first conversation with human resources. It came about because I asked for some accommodations at work. What I really wanted was to have my teaching assignments be in the same building that my office was in. Because winters are mostly quite snowy and icy in Pennsylvania, walking across campus under the best of circumstances can be challenging. When you can only see out of the central part of one eye…no vision in the other eye and no peripheral vision in the eye you are now depending on–it is downright scary. If I could not have classrooms to teach in located in my own building–which would be a challenge since the semester was underway–I wanted to pay a graduate student escort to assist me. That meaning having approval for resources. At any rate, I found myself making an appointment to see my human resources representative. I asked my husband to go with me. We appeared at the office and explained our reason for being there. We were told, “I have never dealt with this before… I have had some faculty–mostly elderly men–have trouble hearing in the classroom. More often than not, however, students rather than faculty made me aware of the situation…” Uh, how does this relate to me? I thought. I looked at John and he looked at me. “Do you have long term disability insurance?” the representative asked. I nodded. “Well, you might want to think about” and this is where things are a bit fuzzy–I don’t know if she said resigning, retiring, quitting–but some word that meant ‘ending my career’–“and go on disability insurance.”

Yeah. Not so much. First, I did not feel ‘disabled.’ I felt that so many things about my health were above par and surely there would be ways to assist me with what had become a challenge. I guess I was shaking my head ‘no’ or something because the representative was saying, “OK, well let me look into this….”

So many questions flooded into my frame of being that day. How many people are drawing disability because someone could not think outside the box in working with them? I would be interested in hearing from you