introductory post

I've been a blogger for several years. I have considered transferring old blog entries related to ROP to this blog. However, as I read through my old entries, I found that it would be difficult to separate ROP-related material from other material in my blog. ROP is a piece of my life--a very important piece, but still only a piece. I am accustomed to discussing ROP on email lists confined to this discussion; but I felt that it was important to set up a blog where I could discuss more openly issues that I have lived with and wrestled with related directly to ROP.

I was born 12 weeks early in May, 1972, weighing 2 pounds and 2-1/2 ounces. My family was in the midst of a cross-country move from Oklahoma to Gulfport, MS, where my father would serve as a pastor for the next year or so. I remained hospitalized for 80 days, and my parents visited me once a week. They did not hold me until they took me home. According to Mom, thye got a call one day telling them to "come get her." They know very little about my NICU stay. There are many things Mom and I wish we knew.

I was diagnosed with ROP when I was five months old. Back then there were no screening procedures or treatments. ROP was then known as retrolental fibroplasia, a term describing the membrane characteristic of advanced ROP which often causes partial or total retinal detachment. Most people with this membrane were legally blind. Many were totally blind or had virtually no usable vision. The extent of my blindness was unknown until I was old enough to behave in ways that indicated I could see: pointing at lights, etc. I eventually learned to distinguish the differences between a few colors and read extremely large print.

People with ROP are vulnerable to a number of complications due to growth and changes in the eye. These complications are treatable if detected early. I have been treated for a number of complications:

• retinal detachment and cataracts at age 8
• surgical management of chronic (non-painful) angle closure glaucoma at age 20
• retinal detachment and cornea transplant due to corneal clouding at age 26
• 2nd cornea transplant due to failure of first transplant at age 28
• artificial cornea following failure of 2nd transplant at age 32
• removal of membrane (immune reaction to transplant) at age 35

I am on medication for glaucoma as well. The corneal clouding is not a documented complication of ROP but may have been related to persistent elevated pressure or repeated surgeries. Currently I am able to distinguish a small number of variations in color contrast and to locate some objects in the environment. This vision is useful in navigation but not for reading. For reading, I use braille and auditory materials. I have a program on the computer that provides synthetic speech output of text on the screen and can also display it on a braille display. I also travel with a dog guide.

I attended public schools in Texas throughout my entire school career, spending one summer at the Texas School for the Blind as a part of their talented and gifted program. After graduating high school in 1990, I attended Anderson University in Anderson, Indiana, a college affiliated with the Church of God Reformation Movement. I had grown up in a Church of God-affiliated congregation and desired to study music business at AU. I experienced some difficulties at AU, which I will post about separately. These were only partially related to blindness. In 1992, I transferred to Stephen F. Austin State University in Nacogdoches, TX. I studied elementary education at SFA, spending one semester as an intern in a classroom for children with learning disabilities and another in a fifth-grade ESL classroom. While I enjoyed working with children, I found that the school environment was difficult for me to handle. (I later learned that I had uncontrolled partial seizures as well as sleep apnea, and these likely contributed to my difficulties with maintaining alertness.) I dropped out of the education program without having student taught but having completed over 60 credit hours in education and special education courses; and I changed my major to psychology. I graduated in 1999, taking my final two courses back at AU following a family move to Anderson.

Following graduation, I held several part-time jobs. I worked part-time in a child care environment for three years before moving to Florida to work as a contractor providing technical writing services to Freedom Scientific, Inc., a manufacturer of adaptive technology for people with disabilities, in 2002. In 2004, I returned to Indiana following the active hurricane season. In 2006, I enrolled in AU's School of Theology to work toward my Master of Divinity. I have been a full-time student and anticipate finishing by the fall of 2009 or spring of 2010 depending on course offerings.

I mentioned seizures above. The seizures began during my teens; but getting treatment for them was a tremendous challenge. I have since been diagnosed with a number of other conditions as well: asthma, migraines, arthritis, chronic sinusitis, aspirin sensitivity, and possible mitral valve prolapse. Staying healthy is not easy for me; and often dealing with ROP takes a back seat these days. Still, I encounter blindness issues on a regular basis; and I remember that for people who are new to life with ROP, this is something that provokes many questions. That is why I want to open a dialogue about ROP. I will post about common questions that have cocme to me over the years, and I will also post in response to questions readers ask in comments. I can't promise regular posting--a lot depends on how much energy school and health stuff is taking out of me. But perhaps having something to write about will get my juices flowing.

I recognize that blogs develop community, and I want to encourage that. If you like to comment, please do. My only request is that you be respectful in your comments. My personal preference would be that if you use anonymouse posting you at least sign your first name or something that we can use to address you. It is confusing to me to read multiple "anon said" posts.

I may at times post general prematurity topics; but I need to state from the outset that my blog is not a forum for ethical debates. In the event that I post things that result in sensitive discussions via comments, I expect those discussions to remain respectful. I have worked very hard over the years to learn to respect both sides of sensitive issues. It has not always been easy. I expect anyone who reads this blog to take a step away from their personal agenda before posting a comment, especially if they feel upset by something that is said. Please remember that the person you are replying to is a human being with feelings. Also please remember that I can and will close discussions that become too heated.