Just in case anyone thought there was a light at the end of the tunnel - might  I remind y'all that I can only see it in my mind's eye at the moment.

Bad news. Trying not to get hysterical. Breathing deeply, singing Helen Reddy: "Yes, I am wise, but it's wisdom from the pain. Yes, I've paid the price, but look how much I’ve gained, If I have to - I can face anything at all, I am strong. I am invincible. I am woman!" at the top of my lungs (and off key). I am praying and chanting "There's a river of birds in migration, a nation of women with wings..." I am laughing as much as possible and connecting as much as possible. I am scared though.

The doctor had to do a second surgery on Monday. I can no longer drive legally. The implications of this are huge. I am scared of losing Parker. I am scared of losing my sight. I am scared that people will get sick of driving me up and down the mountain to get medicines and get Parker to and from school. I am trying to take one thing at a time. One hour at a time. The pain is un fucking believable. If I wasn't experiencing it, i would never believe it myself.

I can't numb the eyes because, as heir doc-tor has told me, I cannot take away our best indicator for how well the medicines are working. Pain is on my side, it seems.

This is the deal. My vision is 20/100 in both eyes when I can keep my eyes open which isn't saying much. The eyes are involuntarily closing - like when you walk into a floodlight from a cave or when a piece of metal shard gets into your eye. They just won't open. Or if they do, it's crazy pain. Writing this update is crazy, for example, and takes me a long time because I have to do it in spurts. I have three diseases in my eyes - SLK (superior lymbic keritoi? conjunctivitis?) and the PNP and ocular something or other that is also called dry eye syndrome. Can't do much about the skin falling apart and the scarring (causing friction and covering the tear ducts) while I still have the cancer, the operation involving the placenta does not look as hopeful as we had thought (after second examination on Monday and further tests) and the best case scenario for the dry eyes is that the medicines will start working to make it somewhat tolerable within 3 months. Heir doc-tor said not to hope for best case scenario because of PNP and complications.

Did I mention that I am trying not to freak out?

It is dark, dark times, my friends.

My lights are many though. I count my blessings all day. I can still open my eyes sometimes. Drops help. Glasses might be able to get me to drive legally for when my eyes can stay open. Parker and I laugh and play and work together like the team that we are. Aaron, my housemate, and I laugh and laugh and laugh. We wrote haikus for the www.divine-interventions.com website (home of the baby jesus butt plug). I get emails from y'all and that keeps me going. And there is someone who thinks that I am sexy and intense in very good ways. Can I tell you how great that feels? I wish to hell that I could be having the fun that I am having with him without all of this eye drama - but I guess I can't really look a gift horse blessing in the mouth. i am grateful for all the light there is in my life.

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What a difference a day makes! O me of little faith. I really did not think the doctor was going to give me any kind of solution. I’ve been to him before and to a whole room full of specialists at UCSF, actually. A dozen ophthalmologists flipping my eyelids inside out and ooooing and aaaahing at how textbook classic the scars are…yeah, whatever. No help there.

But yesterday, it was a different story. I guess the skin falling apart on the lids has calmed down enough or is in a way that the damage can now be measured and tested. They ran some tests and performed surgery right there on the spot! The doctor noted that the dryness was severe (hel-lo?!) and also noted the placement and severity of the inflammation of the membranes that cover my eyes. He said that he would have to give me the “full-court treatment”. I had no idea what he meant and when he realized that I am not a basketball fan, he told me that they wouldn’t let me leave without doing all kinds of things.

I got plastic plugs surgically inserted into my tear drainage holes so that any moisture that I might obtain (naturally or artificially) might stay longer. I got a regimen of medicines and drops and, the best news: I may be a candidate for a new surgery!! Since last I saw this doctor, a surgery has been developed where they take off part of my eye (the covering) and replace it with membranes from a donor placenta from a woman who has given birth by C-section! Isn’t that AMAZING ?! It means that I might be able to see normally within a couple of months (well, maybe – but maybe is SO so much better than “Sorry. No chance.”)

He said that it will probably get worse before it gets better (the drops burn like heck!) but, still, I am thrilled!

Thanks for the prayers and well – wishes. As always, I am carried on your collective wings.

Current Mood: accomplished

Current Music: I Can See Clearly Now The Rain is Gone...

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So many of you ask how do I do it? How do I face all that I have to face and still keep a smile on my face and love in my heart? I have been unable thus far to explain it to you adequately. How can I describe the combination of emotions that go along with having my skin turn black and fall off, losing my wife, watching my body change dramatically, taking the best care of my child as I possibly can? I cannot share my pain and joy with you. I cannot share most of what I experience.

But I have managed to find a few silver linings in losing my sight. One of them is that I can share something with you. You can have an opportunity to experience my world – at least a little bit of it. And so it is that I challenge you.

Pick a day when you are going to be me. You have to keep your eyes closed from the moment you wake up. Guess what time it is depending on how bright the sun is.

If you can get out of bed, take a shower and get dressed, you are doing great! Make sure to hold your hands out a lot so you don’t knock your shins or your head. (I speak from experience.) And check to make sure of the status of the toilet seat before you pee. You can stop there if you want.

But if you want to keep going, make yourself some coffee. If that seems too dangerous (because it is dangerous), just have juice or water. Make something simple for breakfast. Are you still with me? I have to admit that I can’t do the kitchen stuff completely without sight yet. I am able to open my right eye about 30 percent of the way open which affords me a painful but needed glimpse of where the dishes are. You can do the same.

Now it is on to checking email (or posting on livejournal, as the case may be.) This is the one place where you are allowed to really use that right eye. It is painful as hell (which I cannot give you as an experience) but you’ll understand some of what it is like if you blow the fonts way up (thereby making reading very slow as you scroll across the page.) Type with your eyes closed and take breaks to rest that right eye. Remember – it only opens up just a tiny bit. Squint and rub your eyes often. Just know that this will take a long, long time. You can’t see the clock anyway, so don’t worry about it. Remember that the pain is totally worth it because this is your link to the river of birds who will carry you when you cannot fly alone.

If you manage to get that done, you can call it a day. Unless you are fiercely brave. Then I dare you to call a friend and ask them to bring you either to the grocery store or to a social event.

You really cannot open your eyes now because the sun is too bright and wind makes it impossible even if you were willing to take the pain. It’s OK – use your hands, get your friend to guide you. Know that they aren’t used to doing this either, so they will forget to tell you when there is a step and you will probably bump into at least a couple of people and probably a table or two. Just say excuse me and move on.

Listen to everything that is happening around you. Smell the air and sense when someone comes close. If you were super crazy, you chose a social event where there were children. They have no problem whatsoever asking you all kinds of questions. Smile and reassure them – you are not asleep.

If you manage to accomplish all of that, I applaud you. Go home and listen to Helen Reddy. With your eyes closed, of course.

Or – and I am not making this up – you can try a craft project. Last night I made a beaded necklace –painfully peeking just a few times to establish the color of the beads and to use the tool to finish off the clasp. Only I wasn’t listening to Helen Reddy. I was listening to Melissa Ferrick (Freedom) and Meatloaf (Bat Out of Hell).

No matter what level you take this challenge, this is what I hope you experience: annoyance, fear, anger, frustration and helplessness giving way to courage, perseverance, patience and an acute awareness of the blessings that you still have.

Do not be afraid to ask for help. Do not be too disappointed when it doesn’t come. People have their own lives and that’s OK. You are strong, you are invincible.

Let me know how it goes.