Entries for the ‘Health identities’ Category
May 7, 2016
I woke up on a lovely Pennsylvania fall Saturday morning and something was not quite right. It took a bit for me to realize that my left eye wasn’t seeing… Well, it was seeing a little. Across the top, even to this day, there is a line of light that comes in. If I move my head about, I can see a narrow–very narrow–squished image. Under that is a line of ‘lavendar’ darkness. A tiny bit of light. Then darkness. I didn’t mention to my spouse for awhile. I was waiting to see–literally.
I don’t think my vision loss is quite like Kubler Ross’s stages of grief [denial, anger, bargaining, depression, acceptance]. I was more confused than in denial. I had been diagnosed with drusen in my optic nerve in both eyes some years earlier and had slowly been losing peripheral vision. If you search on drusen, you will find that there are two types. The other type that I have not been diagnosed with is related to macular degeneration. There is a family history of macular degeneration on my mothers’ side, but I had been told that drusen in the optic nerve is rare and only related to peripheral vision loss.
I emphasize the latter because it is a rather unfortunate thing that loss of peripheral vision had been treated in conversations between me and a long list of eye doctors as ‘only.’ First, I lost the central peripheral vision. I have not seen my own nose except in a mirror [or photos] in years. And, yes, that has posed few problems. Then I lost the lower peripheral vision. Still not limiting in costing me driving privileges. But try stepping out to go down stairs with no lower peripheral vision…scary. I always edge my way to the handrail and in settings where I am often needing to use stairs, I count them. I memorize how many there are so that I don’t have to go too slow in terms of holding onto the hand rail.
I had begun to lose some side peripheral vision by the time this central vision loss occurred. Interesting fact: each state determines the vision requirements for having a driver’s license. My regular ophthalmologist had warned my husband and I prior to this latest event that I was approaching the zone where I would not be able to hold a valid driver’s license due to peripheral vision loss. But I digress.
So, the odd event wasn’t changing. I told my husband. We live in a rural area where a visit to the ER for vision would be something done if your eyes were bleeding, I guess, but not for what I was experiencing. I was, however, at the specialist’s office at 9 a.m. on Monday morning. Many things followed. I remained confused. My brain was also confused. That little line of light coming in above my central vision field was making my brain fight to try to see ‘normally.’ The solution–a beige eye patch like the one in the picture here.
No pictures of me wearing one. No one ever saw me wear it except my spouse and one colleague. A knock at my office door and I could have that thing off in a flash….
So, what does it remind you of–a pirate’s eye patch? Me, too. Do you know why pirates wore eye patches? So that one eye could be used to see in the darkness of the bowels of their ships…that’s right. Remember my story about orange lenses and contrast? Yep. They had it figured out. Interesting story about it here: http://mentalfloss.com/article/52493/why-did-pirates-wear-eye-patches
May 4, 2016
I retired this past year. It is early, but I could, and so I did. Doing so allows me time to pursue projects I could not otherwise have done. It lets me quit worrying about whether I can meet expectations at work. It lets me quit worrying about whether a human resources person will come knocking on my office door to help me see the wisdom of ‘going on disability.’ It removes the anger, frustration, and hostility I felt toward having to repeatedly ask for a classroom in my own building where my office is located and still not getting assigned to such a classroom. It allows me to be an advocate for people living with low vision, to share our experiences, to promote awareness and understanding, to encourage everyone to recognize this largely invisible group of more than 135 million people, and to apply my communication expertise to these goals… In case you were wondering or had already asked me….and even if you weren’t and didn’t…
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.
What is it that they say? –the calm before the storm….
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…
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
November 14, 2013
Many of the important messages about health include information about the role of genes for health. Genes matter. Behavior matters. Environments matter. The problem is how to communicate that genes do not absolutely determine health. This will be an important part of health communication for many decades to come.
Professor Celeste Condit wrote about how genes have been defined in her book, “The meanings of the gene” [http://www.amazon.com/The-Meanings-Gene-Heredity-Rhetoric/dp/0299163644].
Efforts to define genes often depend on the use of metaphor, explaining what a gene is in terms of something else that an audience is assumed to already understand. Many of these metaphors use “instruction” as a key component. Professor Rachel Smith and I decided to evaluate two of these instruction metaphors, one that defined genes as “a blueprint of our possibilities” and the other that defined genes in terms of “instructions” more generally. The abstract of the article to be published in February in the journal, Health Communication, appears at: http://www.tandfonline.com/doi/abs/10.1080/10410236.2012.729181#.UtLxv1OFeSo. The online article is at: DOI: 10.1080/10410236.2012.729181
Participants received a message about the role of genes for health for which the introduction varied the definition of a gene, and all other content was the same. Participants who read a message with the blueprint metaphor were more likely to believe that genes absolutely determine health and that genetic therapies are the effective means to address the role of genes for health. The instruction metaphor related to participants having stronger beliefs that genes make one more susceptible to disease but do not absolutely determine the onset of disease, and beliefs that we have some personal control over the role that genes have for our health.
These results support the importance of the metaphors used to define health and scientific terms. Just one exposure to a message that defines genes in different ways can have powerful effects on our attitudes about genes and health.
August 28, 2013
One of the fun things about writing a book like ‘Talking about health’ is that readers tell me that they are inspired by the family stories included in the book. My youngest sister includes her story about a long road to conceiving her daughter–both pictured here with popsicle stick in hand.
I have read many of the stories in my book to my undergraduates and they, like some readers who have told me what they like about the book, love my sister’s story. Perhaps many can relate because they know someone who has gone through something similar [see http://www.cdc.gov/nchs/fastats/fertile.htm for CDC statistics about just how many].
Today is my sister’s birthday. I wish we lived closer so that we could have shared a cup of peach green tea. ‘Happy Birthday, Sis!’
Source: Best Public Health Schools