Friday, January 24, 2014

A Turd In the Punchbowl: The Human Eye With Cataracts by Peter Reum

For the last six years, my vision has gotten progressively more and more impaired due to the rapid advance of cataracts in both of my eyes. Unlike many visual impairments, cataracts insidiously sneak up on you and gradually blur your vision and eventually make your world an artificially dark world, even on a sunny day.  For several years, I did not realize that my  vision was headed southbound, and that my confidence in my own perceptions was being impacted by my vision's deterioration.

Something began to look wrong when I could not read a computer screen at a normal distance, even with glasses.  I found myself creeping closer and closer to the words on the screen, and thought it was due to my corrective lens prescription. I have always trusted my glasses, as they are a part of me, a tool I have used with 20/500 vision since I found I could not see the blackboard in first grade over 50 years ago. In the Disability Rights Movement, we have worked hard to help the general public to see that a wheelchair does not confine a person with quadriplegia, it gives that person freedom to move anywhere they desire, as long as the world is accessible.The Deaf Culture has fought hard to preserve American Sign Language, even though the cochlear implant has made aural correction possible for many people who are deaf.

So, what happens when a person with a disability has the chance to be "cured?" Would a person with paraplegia accept technology or medical intervention that would eliminate fully that mobility impairment? Would a "little person" be willing to accept medical intervention if they could effectively be of  "average height?" That was the question that was posed to me in my 2012 Annual Eye Exam when my opthamologist told me that I would gradually go blind, if I did not accept corneal implant surgery, I was caught flatfooted, as I did not know much about cataracts, at least until he told me that I had a moderate to severe case, and that I could see if I went through with the surgery.

In a sense, the human eye is a ball of liquid, nearly round, with light entering the eye through the pupil, then being focused by the cornea or lens, thereby projecting the image to the retina at the back of the eye, which then travels to the brain's visual cortex. The lens of the eye, due to several factors, including aging, will become gradually clouded, and changes from being clear at birth to opaque in later life, thereby creating a feeling of uneasiness and uncertainty of visual perceptions over time.

With the gradual darkening of the eye's lens comes blurred vision, and an inability to read subtle elements of facial expression and nonverbal communication through body language. Other domains of life are also impacted... I have not driven at night for several years, and my vision has deteriorated to the degree that I cannot read street signs during the brightest part of day.

Into this situation came the possibility of replacing my eyes' lenses with corneal implants. I had been approached with the idea during my 2012 eye exam, and had chickened out that year. In 2013, my opthamologist again advanced the idea, and I accepted his recommendation to have corneal implant surgery. We scheduled the surgery after a review of my health, and I looked forward to the surgery

On last Wednesday, I enter the Billings Clinic Outpatient Surgery Building, and with some mild temerity awaited my first eye to be changed forever. As an aside, I will say that I have been very nearsighted since birth, and have never had the experience of seeing the way ordinary sighted people see....until now. The operation was preceded by some very thorough preparation by the delightful Billings Clinic Staff, and each of them did their utmost to make me comfortable and feeling safe. Having spent the last year reading about corneal implants, I felt that the surgery was a wonderful experience, if a bit anticlimactic.

The operating opthamologist and the anesthesiologist came by and told me what to expect, and then did exactly what they said that they would do. I was under sedation but awake, and remember the surgery as an experience of lights hovering over me like a fleet of UFO lights. The time in the recovery room went by quickly, and they covered my eye with a taped patch, with my orders being not to touch it. I had no feeling in the eye, at least nothing felt painful. The next day, I went to the Billings Clinic Opthamological Department, and met with the operating doctor, who removed the patch.

What I saw in that eye was completely unprecedented and utterly fantastic. My vision measured 20/20 in the eye, and all that I have experienced since has been mind blowing but wonderful. Imagine walking without  a limp if your were born with a bad leg, or whatever metaphor works for you,  The interesting dichotomy that is my vision, is that I still have a cataract in my other eye for a few more days, and it is a contrast bordering on mind eye functioning perfectly, the other dark, hazy, blurred, and shadowy.

Next Wednesday, for the first time in my life, I will see as others see, and it cannot come too soon. My sincere thanks to Billings Clinic, the Outpatient Surgery Staff, and Doctors Bell and Schmidt for their amazing work. Your work literally helps the almost blind see.

Thursday, January 16, 2014

Remembering Gary Schmidt by Peter Reum

When I began thinking about entering Graduate School, it was after spending six fairly rowdy years in the Music Business. It was the Late 70s, and I had ingested my share of chemicals that made small into large and green into red. I had become a prodigious bong salesman, and pictures of me from that time of my life resemble the notorious werewolf on the Warren Zevon Werewolves of London Picture Disc. My Beach Boys Collection had gone from a hobby to hoarding, and I was questioning whether I wanted to be promoting the latest Leif Garrett album when I turned 30. Like many folks, I had morphed from a high school overachiever into a person who disliked the "straight world."

My acceptance to Graduate School was a watershed moment. It signified an E Ticket into the World of Straight, and my life pace went went from Amish hot rod to Chevelle SS 454 in a New York minute. I interviewed for the Graduate School, and they asked me whether I was interested in teaching Special Needs Children or working with Adults with Disabilities. Since my then wife was a teacher, I chose adults, so as not to step on her feet professionally. The program at the university I entered is still in existence, and like many higher education programs, it was overseen by some very educated men and women with strong ideas on what Human Rehabilitation Services was and was not.  I interviewed for a paid traineeship, and was accepted. This meant my tuition was paid and there was a small monthly stipend to defray expenses.

I walked into McKee Hall that fine September 1980 day in my Lowell George Memorial Bib Overalls and foot long beard, and met some of my fellow students, most of whom asked if I was Mennonite. Among them was a guy who was tall, handsome, and had a long white cane. We had all of our classes together that first quarter, and it was inevitable that I would become acquainted with this man who used a cardholder and stylus and took Braille notes faster than sighted people took notes, and faster in Braille than anyone I had ever met. In fact, if I missed notes, I ASKED this guy what he had heard. We eventually introduced ourselves, and he said his name was Gary Schmidt, and that he had lived in California most of his life, having attended primary, secondary, and Baccalaureate studies there.

My life experience with people with low vision and complete blindness had been very limited. Very patiently, Gary would field questions from anyone who asked him about his blindness, me included. His answers cut through the fears all of us newly minted Rehabilitation Graduate Students had, going out of his way to make US comfortable with HIS blindness. It was a pattern that happened again and again through the two years we studied together, and he became well known and highly respected by both students and faculty in the Graduate School alike. Many faculty unfamiliar with reasonable accommodations for visually impaired and blind students were amazed and educated by Gary Schmidt. His calm and easy way of asking for help and adjustments in information presentation made him very instrumental in pioneering a path for peers with visual impairments and blindness who came after him.

But that was just the veneer of the complex and fascinating man that was Gary Schmidt. He had grown up as the oldest of 5 kids, 4 of whom were stepbrothers and sisters, none of them having a disability except Gary. His parents split over his disability, which is more common than any of us want to admit.  His mother moved to Southern California, and Gary's dad raised him initially alone, and then with his step siblings. As we got to know each other, always over beers on the weekend, slowly the complexities that both of us lived with began to emerge. As Gary described it, his dad blamed him for the divorce between his father and mother. Gary was brought up in an almost quasi military disciplinary environment.  The physical abuse that Gary sustained was both harsh and frequent. He developed an almost detached reaction to it, he said, because he could never predict when it would happen, and, being blind, couldn't see it coming.

Because Gary grew up in the Fifties, there were no agencies to report the abuse to, nor did he dare report it, he said, because he did not want his stepbrothers and stepsisters to be beaten. Gary developed a self-discipline that was amazing to witness. Gary not only excelled scholastically, he graduated with honors from high school, a scholar with highest honors in his class of sighted students. He entered undergraduate study at The University of California-Riverside. His matriculation challenged the then Coordinator of Disabled Student Services, Ed Roberts, himself a person with quadriplegia, and the first student with a severe disability to graduate from The University of California-Berkeley. Ed Roberts went on to become the Martin Luther King of people with disabilities, the founder of the Independent Living Movement and the World Institute on Disability, and the Father of The Americans With Disabilities Act. His influence on Gary Schmidt was profound. The two men believed nothing they could imagine was impossible, and Gary Schmidt transformed services for people with visual impairments and blindness at UC Riverside, and eventually the University of California System.

Having served as a professional notetaker for students who were blind at UC-Riverside for two years taking Braille notes at astounding speeds, Gary decided to pursue his Master's Degree to enable himself to further transform services to individuals with visual impairments and blindness, this time in Colorado. I related to him the sexual abuse I had experienced as a boy, and together we made a pact to work for the expansion of rights for people with disabilities. We were not the only people thinking along that line, the entire disability community across the United States was full of people who wanted the same rights that other populations had fought hard for prior to the forming of the Disability Rights Movement.

Colorado itself was a hotbed of Disability Rights agitation, and Gary Schmidt certainly was not the flaming radical that other people with disabilities in Denver were, with the more militant bunch of folks at ADAPT making headlines with their uniquely effective form of civil disobedience, gathering headlines almost weekly in the Denver Post and the Rocky Mountain News. Gary would say that he wanted to effect change one person at a time, and his approach brought many people to his side, including myself. At the University, there was one Statistics and Research Professor who used the blackboard to teach in a highly visual manner that made the abstract information he was imparting almost impossible for Gary to understand. I appointed myself as Gary's Stat tutor, and we would spend hours demystifying the formulas and precepts that encompass the world of Statistics. Gary did his work in a manner that was stunningly innovative in Stat, and took a "B" and the Professor's respect away from the experience.

Gary's ability to prepare astounding in-depth research papers at a time when every source was gleaned manually in a University library designed for the sighted, instead of being turned up by the Internet, was amazing.  Gary and I took a one week intense grant writing class in our program that put us together with a few other students as a team to write a grant. We developed an idea that was well researched and was eventually funded when Gary reworked it as a professional rehabilitation specialist and administrator. What was utterly stunning in this process was his command of the text of a complex and multi-segmented proposal encompassing nearly 25 pages of text. His perfectionism and pushing for precision and structure in this proposal hinted at the later success he would have as Director of Rehabilitation Services for People with Visual Impairment and Blindness in Colorado.

Gary had a wonderful woman who loved him and inspired him to strive for his full potential. He had met her in California before he came to our University for Graduate Studies. Janis patiently waited for Gary to get done with his program, which lasted two full years, the same as mine. My wife of that time and I invited Gary to live with us in Greeley, as we both had internships in Denver, and could commute together to and from our internship sites, a distance of 120 miles roundtrip. Needless to say, there were boundless chances to talk. Mostly, we spoke about Gary's prospects for a job with Colorado Rehabilitation Services for People With Visual Impairment and Blindness, his upcoming marriage to Janis, and perhaps kids. in both of our futures. His abuse as a kid led to him having a tendency to sleepwalk, with occasionally humorous results. One night, he got completely (and immaculately) dressed for work, walked out the door into the garage, opened the car door, and waited for me impatiently, all while he was fast asleep.

Gary was hired by Services for Visual Impairment, and would ride the Denver Bus System to every nook and cranny of the Metro Area. As time went on, he moved up in the system, eventually  becoming the Director of Services for People with Visual Impairment and Blindness for the State of Colorado. Gary would fearlessly get on a Greyhound Bus to Durango or Grand Junction, not knowing the layout of the destination city. When he would arrive, he would find a pay phone and use his flawless memory to call the local Rehab Office to get a ride there. He and Janis got married, and Janis had a distinguished career of her own as Teacher of Blind Students in the Schools in Jefferson County. They wanted kids, but couldn't have them. Gary made concerted efforts to forgive his father for the violence he experienced as a child, and worked hard to get to know his mother better, not holding her fleeing from his side as a baby due to his blindness against her.

The intensity of our friendship was diluted somewhat by my taking a job in Greeley, Colorado, first at The University, then at the Community Services Board for Persons With Developmental Disabilities. When our first daughter was born, we had a beautiful present from Gary and Janis. When our second child, a child with a severe disability was born, I could not think of a more fitting couple to be her godparents than Janis and Gary. They kindly came to Greeley and took part in our daughter's christening. Time marched on, and the next time I spoke with Gary and Janis, he mentioned that he had been diagnosed with a rare form of testicular cancer. I heard him express the determination I had heard so many times before, and believed him when he said he would beat the cancer.

About 9 months later, having spoken by phone many times, I was told by a mutual friend that Gary was being given a terminal diagnosis, and that it would be wonderful if I came down to take Gary to dinner and to have a "session over beers" like the old days. When I saw him at his office, I was grateful he couldn't see my reaction to his appearance, which was stunning. His cancer had spread to his lymph system, and he had a huge tumor sticking out of his neck, and his usual pale complexion was ghostly white. We spoke with each other over beers for as long as his stamina held out. I dropped him off at home, and gave Janis a hug.

I asked the Colorado Rehabilitation Association to give Gary an award that fall, which they kindly did, with Janis accepting the award in Gary's stead. By that time, he was bedridden, and could not speak. Janis read the award to him. He died that winter, and his funeral Mass was attended by close to a thousand people. I was honored to be a pallbearer. In death, he was honored by the professional association of Rehabilitation Teachers and Mobility Specialists with an award in his name given to the person most exemplifying the excellence Gary pioneered as a Rehabilitation Teacher, Counselor, and State Director.

When I recently "googled" his name, the only evidence I could find of Gary's life was the Award bearing his name. I became determined to ensure that the name of Gary Schmidt, my friend, my colleague, my daughter's godparent, and my hero, would not be forgotten. Every person should have a friend like Gary. His life was a story of love winning over evil, peace winning over violence, kindness triumphing over anger, and faith overwhelming and destroying doubt. His funeral service speaker said that Gary would not know blindness in his afterlife. I think Gary would have been okay either way, as his blindness was such a small part of his inspirational life.

Text Copyright 2014 by Peter Reum-All Rights Reserved