Last Month and Last Year

A series of butterfly cocoons. Some are still closed, a few are open. A butterfly has just emerged from one of them.

It’s been a quiet month here on the blog, because life outside the blog has been a whirlwind. My parents came into town for two weeks to help me clear some of the last medical and bureaucratic hurdles involved in relocating and getting social services. There’s a lot of bureaucracy involved in going blind—a lot of paperwork and visits to doctors and government buildings, then a lot of waiting, then more visits to doctors and government buildings. My parents graciously ferried me all over the Bay, condensing errands that would have taken me weeks into a few days.

It was the big push at the end of a long year of change. About this time last year my dissertation proposal was accepted by the faculty in my department and I became officially A.B.D. I had already been legally blind for a year before that, but the proposal marked a turning point. It was the last piece of work I was able to complete without radically changing my process to accommodate reduced vision.

And since then? Well, I haven’t made substantial progress on the actual dissertation in almost a year.

It’s not like I’ve been idle. Our family moved across the country and settled in a new town. Kristin started a new job in a new career. Jane turned from a baby into a toddler. I learned Braille and mobility skills, dove deep into accessibility, and developed new workflows for research and writing.

Looking back, it feels like I spent the year in some kind of professional chrysalis, a space that allowed me to process, change, and transform. Now I feel like I can finally return to the work I set out to do in the first place.  It won’t be smooth and easy sailing as a beautiful blind butterfly, but at least I’m ready to start moving forward.

The Value of Photographs

An image of my daughter at the kitchen table, grinning over her breakfast. She is in striped pajamas and has wild, messy bed-head.

I spent a long time looking at this photograph today. Many minutes, because I had to, and because it was worth it.

Kristin took it at breakfast this morning. I was sitting right there, and I was enjoying the moment, but seeing the photograph was a different experience entirely.

In general, I look at a lot fewer photographs these days. It takes me longer to make sense of what’s going on in them. The colors and lines just won’t resolve into recognizable objects the way they used to. Sometimes it takes a few seconds, or a few minutes before I realize who or what is in a picture.

But there’s a flip side to this, because I don’t see life as quickly as I used to either. It takes time for me to make sense of what I see, for my brain to construct an image out of the faulty and partial information my eyes pass along. And life doesn’t always stick around waiting for me to make sense of it. 

My daughter is a toddler right now, and she doesn’t stick around long enough for almost anything. Sometimes, if the light is just right and at just the right angle, and she moves in just the right way so she’s framed in it perfectly, and of my eyes feel like behaving themselves at just the right moment, I get this clear, fleeting glimpse of her face, and I get to see just how beautiful she is. These moments stick in my mind, but they are rare, and all too brief. I miss so many details so much of the time.

But when Kristin takes a photo like this—a crystal clear, stunning capture of a living moment—The world slows down. It stops, allowing me all the time I need to pore over the scene, working out and appreciating every feature and every nuance. 

I know that a day will come when I won’t be able to see her this way, to know her face in this much detail, even from photographs. And I know that some day after that, I won’t know what she looks like at all.

And I will miss it.

It won’t affect my love for her, or my care for her. I will still play with her and laugh with her and teach her and share life with her. I will know a million things about her that are more important than her physical appearance.

But I will still miss it.

I’ll miss that shining grin and those sparkling  blue eyes, those looks of joy, inquisitiveness, mischief, and wonder.

So for now, I will treasure the photographs, and I will gladly take all the time I need to etch every detail into my mind and into my memory.