I have an eye disease known as keratoconus. My cornea, the clear outer surface of the eye, is an irregular surface, thin on the edges and thick in the center. It is cone shaped, not round like everyone else's. Thus, my vision suffers. Keratoconus is a terrible thing that steals one’s vision. Something most of us take for granted. That bulge on the surface of the cornea plays havoc on the field of vision. Distorting, blurring, creating images that don’t exist. I use the expression warped, as I pan across a room, things come in and out of focus, their proximity changes, boundaries move and I get nauseated.
I have a story to tell about being a teacher with my eye condition. I teach science, and it is only because of modern science that I am not blind. More specifically, I teach teenagers, and we talk a lot about responsibility and freedom. Teenagers can’t wait for the privilege of driving, but without any experience many die in horrific accidents. It’s unbelievably profound to me that two teenagers died, while making poor choices, allowing me to teach others about making good choices. If you are confused you’ll want to read the rest of the story.
While serving in the United States Air Force I had just re-enlisted and was to become a loadmaster on the C-5 Galaxy in 1982. Before I got that chance however, I failed a required flight physical. After seeing a couple of specialists, I learned I had the disease. I also learned that its cause was unknown, my vision would digress slowly, and most importantly, I couldn't be a flight crew member. My days in the United States Air Force were over.
I chose to take my honorable discharge and try my luck in college. I enrolled at an extension campus for a major university. My major was still undecided so I followed my interests and studied engineering and science to determine which path I’d take. During this time I took a volunteer position as an assistant coach at a local middle school. After that experience the decision was easy; I loved coaching, and I believed then as I do today that good coaching and good teaching require the same talents.
Upon graduating I took a position as a middle school science teacher. I love what I do. Fourteen year olds have energy and I only have to focus that energy in the proper direction. It isn’t always easy; like many other teachers, just when I think I have adolescents figured out, they surprise me. During those early years the eye disease wasn’t forgotten, I had to give up softball and racquetball because of injuries suffered with my loss of depth perception and acuity. Within five years of teaching I was wearing two contact lenses in each eye. The idea was for the smaller hard lens to flatten the cone growing over the pupil of my eye and for the large soft lens to keep the smaller one from being flipped off my eye when I blinked.
The disease robbed me of my ability to read for pleasure and drive after dark. I experienced headaches while reading with uncorrectable vision; even wearing contacts my vision has fluctuated between 20/30 and 20/60. The "starburst" and "halo" distortions of headlights striking the surface of my abnormal cornea are side effects I still live with. Rigid contacts came next and they are hard gas permeable pieces of plastic that do a magic trick on the keratoconus bulge. You see the eye is mostly water and is very malleable so while soft lenses take the shape of the eye, with rgp lenses the eye takes the share of the lens! So while wearing the lenses the bulge is squished or flattened into a more rounded shape and vision improves as long as your able to wear them. For many keratoconus patients this is how they manage their lives, able to see for the hours of the day with rgp lenses in place and nearly blind when these lenses are removed.
For me the condition continued to progress and my ophthamologist was concerned the surface of the eye would rupture, leading to permanent blindness. The only option was a relatively new and rare (in 1988) corneal tissue transplant. The surgeon would remove the upper layers of my deformed cornea and replace it with healthy tissue from an organ donor. Like all transplant hopefuls, I was added to a waiting list. I was lucky. Some people die while on this vital organ waiting list. In less than a year I received "the call," donor tissue matching my blood type was available. I was in the middle of a class when my principal interrupted, informing me the hospital requested I get there as soon as possible. I’m glad I didn’t know the timing of the operation so I didn’t have to worry in anticipation. I hadn’t asked a lot of questions prior to the transplant operation. What I learned that day about corneal transplants really "opened my eyes."
I wouldn’t be put to sleep for surgery on my eye. Instead I’d have to remain conscience and watch the whole thing! One of the early stages of sleep is called R.E.M. for rapid eye movement. It would be impossible for a surgeon to operate while the eye danced back and forth.
Between all the straps and clamps and sand bags, I was pretty well immobilized. My eyelids were peeled back and I looked up into a brightly lit room and the small end of a microscope. An injection of some wonderful drug had me feeling no pain and the setting took on a surreal effect. I knew I was the center of attention, but I seemed to be watching it from a distant position.
The buzz of voices would occasionally mention my name and seemed to explain the procedure. From my perspective the surgeon picked up a small razor edged cookie cutter and twisted it back and forth over the center of my pupil. After lifting the old cornea with tweezers he laid a new piece of donor skin over my eye and the images around me grew sharper. I could now make out the faces behind the masks and unfortunately the instruments the doctor held.
A needle and sutures were being directed into my eye! The childhood promissory oath jumped into my thoughts. "Cross my heart and hope to die, stick a needle in my eye," took on a whole new meaning. Into my eye the needle would sink and then turn outward the stitches were pulled tight, the force seeming to lift my eye from its socket, and tied in a knot. Stitch after stitch after stitch tied the tissue in place as the surgeon worked all the way around the eye. It would be months before the stitches could be removed. I still remember the feeling of my eyelid brushing across those rough pieces of thread.
Antibiotic cream, lubricant drops, steroid drops, pain killers, gauze pads, and a pirate’s eye patch were issued and explained. A set of postoperative instructions were read and signed. After the sedative wore off, I was sent home. Other than periodical check-ups for tissue rejection I would need most of one year to heal before they’d try the second eye.
I lived alone in an apartment and could not return to teach for a week or so. I watched television that first day and by the second I was bored and went for a drive. With one eye you learn to scan the roadway by rotating your head from side to side in a constant sweeping motion. I felt I was a menace to the other drivers sharing the road, yet it is legal for people with one eye to drive. I went to a large store just to walk around. Instead of using the automatic doors I reached for the door handle of a regular, self closing door and learned something new.
When I pulled back against the door’s hydraulic cylinder I had broken one of the post operative rules. The rules said "no lifting of anything more than ten pounds." I guess the door weighed more than ten pounds and I now know when one set of muscles in your body contracts others will sympathetically pull. As I entered the store, I felt a warm and wet sensation spreading through my eye. When I found a mirror and pulled back the patch I saw the white of the eye turning red with blood. I had pulled the stitches loose!
After driving to the surgeon’s office I was swept into a room and quickly examined. The doctor explained that he would need to replace those stitches right away, and he gave me a choice. I could opt for a return to the hospital, requiring him to change his schedule and sending all the people in the waiting room home, or if I was tough enough he could put new stitches in right there in the exam room. Between the challenge to my masculinity and the guilt I felt if the other patients were sent home, I chose to let him fix me up in his office.
I only know that today the choice would be a different one. Without all the hospital straps and clamps, the hands of a couple nurses and my own willpower had to suffice for holding my head steady. Without an anaesthesiologist the use of novocaine would be required. In short order a needle was stuck in the corner of my eye and the same effect we all feel at the dentist’s office was applied to my eye. It felt like my eye grew to the size of a basketball and would explode from the pressure at any moment. With three people standing around my head and six hands holding me down my sutures were replaced and my masculinity would never be the same. To say the least it hurt really badly.
Needless to say I spent the next few days without venturing from my apartment, and I didn’t lift anything I couldn’t eat. When I returned to teaching it was without corrected vision in the donor eye; it would be months before they healed enough to be fitted for contacts. It also took several weeks for the blood from my little accident to clear from the white of my eye. Many people couldn’t "look me in the eye" because it was a gross shade of purple like any bruise, later it faded to green and then yellow.
For the next year I was totally dependent on my left eye as my right eye was recovering. This was an experience because my right eye was my dominant eye. Then I went through the operation a second time for my left eye, and my right learned once more to cover for my weaker left eye. The left eye had its own complication after the transplant was healed. The curvature of the donor tissue was too flat for correction with glasses or contacts so the surgeon had to cut a piece of the donor tissue out and re-wedge or shape the surface. This would lead to tissue rejection.
Just when the donor tissue and my own cornea would start to heal something would cause them to pull back from one another. I had to battle several painful infections and survive without the use of that eye off and on over the next few years. The rejection itself was treated with steroids. I like to tease my students that they shouldn’t mess with me because I spent years using steroids and I might hurt them. Then I explain I didn’t take steroid injections but rather used eye drops so they don’t want me "getting in their face." I might blink on them and snap them in half.
The scar tissue and the sutures cause serious distortions of bright light. These are the starburst and halo effects I see when a beam of light strikes the cornea and is scattered by the irregular surfaces. Night driving is very difficult when the headlights of approaching cars strike my eye and the world around me flashes like the fourth of July. A second side-effect is the loss of depth perception. I remember even before I was diagnosed that while playing racquetball I would misjudge the distance to the wall. Once I actually ran into the wall and needed stitches to close the gash on my forehead. Today students laugh when I try a sport requiring depth perception because I misjudge badly. In basketball, I can easily shoot the ball three feet short or sail it over the backboard.
These side-effects did cost me one of my favorite forms of community service. I had served as a member of a volunteer emergency medical service and as a volunteer fireman for years. One night I had an experience that caused me to quit before I hurt someone. While driving a tanker truck in route to a house fire I misjudged a corner. I had slowed down and started turning the truck before I was even in the intersection. The tires of the heavy vehicle bounced as they left the road surface while the weight of the water rebounding caused the truck to serve. No one was injured. Luckily, the road was deserted at 3 o’clock in the morning. But the experience caused me to resign from doing something I loved as much as teaching.
Over the next few years everything seemed to stabilize itself, I taught and coached without incident. My personal life was complete when I married a gracious and beautiful woman. In fact, I canceled our first date, a blind date, with what had to be one of the most original lines ever used, "I’m sorry I have to break our date, but I’m going to receive an organ transplant." We rescheduled the date and a second followed. In less than two years she would become my wife, and the light of my life. We would later adopt two wonderful children. My life was full. But the disease wasn’t through with me.
The strength of the prescription for my contacts again increased over time and the ability of the doctors to fit contact lenses to the irregular surface proved too difficult. The headaches from grading homework got worse and the comfortable wear time for the lenses shortened to just over ten hours. After that it was like Cinderella and the midnight hour. When the irritation and dryness forced the lenses from my eye, I would experience legal blindness at home for the rest of the evening. Correction was only possible with rigid contact lenses, as glasses could not correct the irregular surface. I had to make adjustments in my lessons at school. I just couldn’t read many writing assignments within the hours I could see.
I contemplated accepting that my career as a teacher was over and to join the disabled ranks. But, laser technology had made great advances in recent years and a new procedure known as L.A.S.I.K. was now in its early trials. My ophthamologist, saved my livelihood a second time when he proposed to use this tool to reshape my cornea. Most patients undergo L.A.S.I.K. to correct poor acuity and mild astigmatism. My cornea had horrendous acuity at 20/400+, severe astigmatism along with the irregular surface. While the average L.A.S.I.K. patient can expect 20/20 vision post surgery, I was thrilled to come away with 20/30 and manageable astigmatism.
For a couple years I experienced the joy of life without corrective lenses. I could see to work and play. I still lived with the poor depth perception and the scars will always wreak havoc with headlights, but I could read and drive without glasses!
That joy was short-lived. It seems the disease is not through with me yet. The keratoconus may yet claim my eyesight. I again wear contact lenses and have quickly transitioned from soft to hard and now specially designed pieces of rigid plastic to fit over the once again irregular shaped corneas distorting my world. My dry, irritated eyes again swell up when I attempt to stretch the wear time. The donor tissue is now too thin to permit another round of L.A.S.I.K.. The ability of corrective lenses to provide vision good enough to drive and continue to teach will soon be in question again. In the classroom I share my experience and try to impart wisdom. Teenagers understanding the need for organ donors express a willingness to help. They share with parents a desire to make a gift of their bodies if the unimaginable should happen. I admire their courage and blunt logic.
Most people see teenagers as disrespectful thoughtless hooligans who think they’ll live forever. I get to witness the caring thoughtfulness of kids unafraid and ready to meet tomorrow’s problems. Each year I marvel at the profoundness of my position. I teach science to teenagers. Without the modern abilities of science I wouldn’t be in the science classroom. I also have a debt to teenagers I have to meet.
Teenagers make the best organ donors. They have young, healthy organs that haven’t had much exposure to cigarettes, alcohol, and drugs. They die primarily in automobile accidents, not heart failure or cancer that claims the lives of most adults. Their harvested organs are resilient and should provide years of good service to a lucky recipient.
The unlucky donor dies and heroically saves several lives by making a gift of their lifeless body. At the same time we encourage adolescents to become willing donors, can we do anything more to prevent such an occurrence? Maybe the laws for driving privileges need to be modified. Maybe parents are not M.A.D.D. (Mothers Against Drunk Driving) enough or proactive in their teenager’s life. Why wait until it's too late? Maybe schools and classmates are not S.A.D.D. (Students Against Drunk Driving ) enough or involved in prevention. The truth is we could all do more.
Each year I preach about the dangers facing my students including driving. It is especially true for teenagers who without much experience take on one of the most difficult tasks they will ever learn. I harp on their need to be defensive and wear protective seat belts. I beg each to think about what they risk every time they climb behind the wheel. No joy ride is worth the sudden loss of life. I don’t want a single one to die needlessly.
I personally know what it is like to receive the gift of sight from an organ donor. I carry the knowledge that two teen-aged drivers made life-ending choices, and I benefit from their loss of life. I don’t like dwelling on the idea. I feel extremely lucky to be given all the second chances I’ve had in my life. I’d give back my eyesight for the chance to speak with those teenagers on the day before their accidents. They didn’t get a second chance, but I did. I try not to waste it….
Tony Phillips (Facebook, Group Profile)