Why it helps to step back, take a look and start planning

It's two days, two weeks, two months, even two or more years after surgery. You're facing unexpected problems with your vision, or eye pain that's driving you to distraction. You don't understand what is going on, or you don't feel as though you're in control, or you don't know what your diagnosis really means, or you don't have a diagnosis and no one but you seems to think there's a problem. Your surgeon or regular eye doctor is unconcerned, or perplexed, or glib, or cryptic, or reassuring but not communicative, or inaccessible. No one seems to have satisfactory answers to your questions, or you don't know what questions to ask, or you are too unsure of yourself to ask anything. No one really seems to understand what a problem you're facing, or they seem to think you might be exaggerating, or they are reassuring but you do not feel reassured. Meanwhile work, family and life in general roll on, you're trying to be business-as-usual despite an eye situation that's disturbing, worrying, depressing, even frightening or obsessing you.

What do you do? Who do you turn to for help? Where do you even start?

You need simple answers to your most critical questions. You need information to help you figure out what questions to ask. But even before these, you may need a framework, something to put your whole situation in perspective and help you understand where you are and where to go from here. A roadmap, in fact. And we hope that the one we offer may be useful to help a few of you new complications patients get your bearings.

The inspiration for this section is very much drawn from my own experience. I think the best thing I ever did for myself was draw up a vision plan.

It was about three months after surgery. I had finally got completely fed up with the unsatisfactory answers from my surgeon (when he could be found) and my optometrist. I had just got a second opinion from a specialist. I had walked away from his surgery absolutely stunned. Up until that day I had never dreamt that I might have permanently damaged vision. My surgeon had diagnosed me with a transient muscular disorder - and now I was told that, in general terms, my corneas were damaged permanently and there was no way to fix them.

It was only weeks after September 11th. I had just got a job transfer and was to be moving within a couple of months. We needed to sell our home, and make a thousand arrangements. I was travelling most of the time on business. And here I was with trashy vision and fears for my future and eyes that hurt and, and, and... I was in danger of getting completely overwhelmed.

So, I sat down and wrote out a plan to break the tasks ahead of me down into digestible chunks, to give myself a few manageable things to focus on and set aside those things that I could safely ignore for awhile. Among other things, I decided that what I really needed was a pair of crutches, and some assurance that walking around with them wasn't going to exacerbate them. I determined to worry about the long term later. One step at a time. Once I knew there were no short-term threats to my vision - no "bad thing" going on that could get worse if I didn't take action - I found I could safely leave the problem of proper diagnosis and treatment for later, and simply focus on dealing with the day-to-day problems.

Your situation is different. Everyone's is. What we want to do is suggest an example of framework some part of which might be helpful to you, to assist you to concentrate effectively on the things that really matter and reducing your stress levels to the extent possible.

Good luck, keep in touch and let us know if we can be of assistance.