Now that you know exactly what you’re dealing with, you can put it away for a while. There’s no chance of any surgical fix, since you don’t have much corneal tissue left, but you also don’t have ectasia, a surprise to anyone who looks at your numbers. Once again, you prove to be an anomaly, not just in the physical realm, but in your emotional and psychological states. You have chosen not to be angry, although you have plenty of reason to be if you want to wallow in it. You still have functional vision, although it’s ugly. You’re still working, and in fact, loss of your clear vision has made you a better designer. You figure that if you can read something, just about anyone else will be able to. This is a big plus in the publishing industry. You have chosen peace over drama and turmoil. This does not mean you give up, it simply means that you pursue solutions objectively, preserving your equanimity.
Your new non-profit is up and running and you and your exec director have been busy building a website, switching over the bulletin board and building a resource network of eyecare providers on whom you can depend for honest second opinions, expert contact lens fitting, dry eye treatment and the occasional surgical fix. A grateful patient donates a large gift that will carry you for nearly eight years. You spend your time talking to patients, asking questions, listening to them vent and trying to find help for them within your network, which grows steadily. Sometimes, all you can do is help them cry.
There exists a small, but very angry, loud group of violently ant-LASIK individuals who believe that because your organization is not overtly anti-LASIK, that you have “sold out” to industry, even though you have no ties of any kind to any industry. Their fiery rhetoric and extreme presence on the Internet make it more difficult for you to recruit doctors for your network, so you work hard at gaining credibility. The bulletin board is no longer a place to set up residence. You pay no attention to the other websites, most of which scare the pants off the patients who find you. They are drama-laden and calculated to produce angry readers, but they offer no hope to anyone. You are realistic, but you value hope over hatred. The reality is that your vision is far more damaged than most of theirs, but their psyches are far more damaged than yours.
Life goes on and you are a busy person. In addition to working full time, administering your non-profit and doing freelance work, you open an art gallery with a friend. On the weekends, you teach jewelry making. You wear +4 glasses for regular jewelry vision, +8s for close-up work, and you have an overabundance of light at all times. Your vision limits you. You have numerous pairs of glasses, something for every distance and lighting situation and you carry them all with you all of the time. Your purse has become the repository for wayward glasses.The inability to drive at night has seriously impacted your mobility, leaving you dependent on others for transportation at night. Things you took for granted before are lost. Your younger son graduates from college, but you can’t see in the auditorium at the honors and awards ceremony and you miss his moment of glory. On the up side, graduation is held outdoors and it’s a bright, sunny day.
You save enough money to attempt your first contact lens fitting. Your exec director is an expert lens fitter and wants to be able to help you. You make the trip and go through the process, but it turns out that your eyes are too dry for a corneal RGP, and besides, that pokey thing in the left eye makes the lens feel like a shard of glass. You strike out on your first attempt. You weren’t really expecting much, but you are looking for solutions, so you tried. You have a nice visit, anyway, and get to see a few sights. You figure that’s that, but you never give up hope that someday, there will be something.
You get an email one day from some news guy in Chicago who wants to interview you for TV about your LASIK experience. This will be the first of many interviews and appearances you will make on behalf of damaged LASIK patients. You travel to their studio to film the interview. You are horrified at how fat you look on TV, but the satisfaction of being able to tell your story more than makes up for your poor body image. You can’t really see all that well, anyhow, so maybe it’s not as bad as you think. The interview is picked up by other media, and soon, you are invited to give more interviews. You attend symposia where you put up a display that shows images of your vision and people take notice. The angry anti-LASIK fringe is incensed that you are getting publicity, but isn’t publicity about complications what they wanted?
You bump along, occasionally giving interviews, working with patients and getting on with the rest of your life. You begin to lose the use of your left thumb and eventually have surgery to replace the joint. A few months later, your gallery burns to the ground and you must go in and salvage everything you can from 17 artists. The two days you spend in the smokey mess turn your eyes into burning red orbs. Just to make sure you’re OK, you pay a visit to Dr. Xxxxxxx. He checks to see if anything has changed, prescribes some drops and comments on a small cataract in the right eye. It’s too small to worry about yet, but eventually….
Things heat up in anti-LASIK cyberspace. You stay out of all of it, just following your own path, choosing peace over all the drama. You have another thumb joint replacement, this time on your right hand. While your hand is in a cast, your organization’s debit card gets hacked. You must fill out 26 separate fraud reports and sign them all. The kind young woman at the bank fills them out for you and you make an illegible X with your left hand. She signs for you. That same week, you are awakened in the middle of the night by a soda bottle bomb going off on the front porch under your bedroom window. You are pretty sure you know which loony is responsible for both things, but you have no proof. You choose to let it go and move forward.
In 2008, responding to mounting pressure from damaged patients, the FDA holds a public meeting. Many patients you know are present, but you are unable to attend because you’ve just had your third thumb joint replacement surgery three days earlier and your surgeon has put his foot down. You and your exec director write a five-minute statement that someone else will read on your behalf. After your statement is entered into the record, you get a call from ABC News. They will come to your house and film you at home. You will be on the national news. The CBS affiliate calls. They will pick you up in a limo if you will appear on their early morning news show. Your arm is still in a plaster cast, just five days out of surgery. You agree to go on. All during the week of the meeting in Washington, you get calls from the media, either for interviews or for connections with others they can interview. It’s a busy week and suddenly your name is everywhere. The local TV station comes to your house to film you. By now, it’s old hat and you no longer watch TV, let alone bother with the news. Besides, you can’t stand to see how fat the TV makes you look.
You get a phone call one day from someone in Washington. You have been recommended for a position as a patient representative to the FDA’s ophthalmic devices advisory committee. They want to know if you’re interested. This is an amazing opportunity to make a difference, not just for LASIK patients, but in a number of other areas in which you have experience. Following a series of telephone interviews and written essays, you are hired. Each interviewer expresses amazement at your objectivity and wants to know why you are not angry, like just about everyone else they’ve interviewed. What’s your secret? You tell them that life is short, and you have to make the most of every day. You can either accept what happens to you, or NOT, and NOT is a very difficult way to live. Before you know it, you are a patient representative, making a difference in a much larger arena. In a million years, you could never have dreamed this.
Some days, you think your brain will explode if you hear another sad story. You want to help them all, but sometimes, there is no help, and oddly enough, some of them don’t really want to be helped. There is no other organization on earth doing what you do. If you close the doors, there will be no one. Although there have been times when you have certainly wanted to over the years, neither you nor your partner seems able to throw in the towel. It seems as though each time you start to feel burned out, you get a call from some desperate soul looking for help or a happy email from a grateful patient, and you know that you are right where you are supposed to be.