V's Version

Dear E -

In your recent letter you asked about what it was like for me, as an artist, to lose my sight. I hope you’ll forgive my lengthy response. I have a lot to say about it that I haven’t made time to say in one place.

I have recently finished a quilt called “Eye Can See!” which depicts a representation of an eye. One thing that I like about it is that when I look at it up close, I am drawn to the detail – the bits if my great grand mother’s lace, the antique buttons, the beads and embroidery, the colors of tiny patches that have no particular pattern. I am caught in the details and it is only with distance that I am able to fully appreciate that there is an image of an eye. The bits of blues form an iris, the whites and creams are the sclera, the flesh tone diamond rays become the lid and the quilt can be seen more as a collective whole than individual details.

My journey into blindness is much like this.

When I was in the journey there were individual moments, individual details of triumph and failure, of fear and hope. And now, with a brief distance of time and a narrow escape from the blindness itself, I am able to look upon the collection of details and begin to form a picture of what the experience was like.

I cannot say that a complete picture has emerged yet. In fact, when it does, I hope that I will be able to express it. I find it vexing that I cannot seem to connect with most people around the experience of going blind, being blind and emerging from it. Most people give me blank stares accompanied by a “tsk tsk oh dear that must have been hard”. What can one say? Eyes glaze over as surely my own do when someone tries to explain something mechanical or technological to me. It is difficult to comprehend what one cannot readily imagine.

If I break it down into details, it works somewhat better.

There is the detail of medical explanation for what happened. It’s important to state that I did not know WHAT was happening as it was happening. I can only go back and see what I was seeing – so to speak. I go back to my medical journals where very precise details of medical symptoms and efforts to alleviate them were kept. We wanted no stone unturned and had to keep track of what worked and what didn’t. These journals are not an easy read, let me tell you. They are horrible. Nightmarish. Full of pain and oozing and swelling and burning. Mostly there were facts - mundane and aloof but occasionally the words expressing fear crept onto the pages.

What was actually happening, unbeknownst to myself or to the parade of doctors and ophthalmologists, was that the fighter cells (B and T?), in an allergic response to the lymphoma in my abdomen, were attacking the proteins that hold the skin cells together. This fighter response affected mostly the soft mucosa of the eyes, mouth, lungs and vaginal canal.

When I am face to face with someone while trying to explain this, I use each of my hands to show an individual round skin cell and then I wiggle my fingers to represent the little protein hairs that hold the skin cells together. I pull the cells apart and let the listener imagine this on a larger scale with real skin cells coming unglued on a real person. Ouch. This is when the glazed look washes over because, really, it’s almost too much.

In the beginning, when the skin was falling apart and my eyes were stuck together each morning, I was alternately annoyed and terrified and disgusted. Understand that my mouth was oozing puss 24/7 (sorry!) at the same time my eyes were so I was often actually glued stuck to my pillowcase while bedridden. After gently separating my face from the pillow each morning, I pried my eyes open. That I had no idea what was happening or what was in store for me was a good thing. If I could have seen into the future, I may have shrunk from the sight.

Over the course of two years, the skin cells fell apart and scarred together repeatedly, thereby changing the texture of the insides of my eyelids. Also, the lacamal glands (which produce lubricating tears) were irreparably damaged. The result was overly dry eyeballs (with their nerve-rich corneal surfaces) scraping around in overly rough scarred eye sockets each time I blinked or moved my eyes. One could suggest that it goes without saying that it was a painful situation. But I disagree. It must be said. It cannot go without saying it. I lived it and other people live it and the story must be told. I just wish that I could say it in a way that could describe how it really was. How can I?

Sandpaper scraping across the cornea just doesn’t even begin to describe the hideous pain. All of it was colored with fear. How long would I have to endure the pain? What was causing it? How could it be relieved? I was misdiagnosed several times. I was told repeatedly by many ophthalmologists that, regrettably, there was nothing to be done other than to try immune suppressive drugs and lubricating drops which did very little to address the issue. I suffered a team of ophthalmologists at a big-name eye clinic who nearly danced a jig when they flipped my eyelids inside out.

“Look at the text book scarring! Go get Doctor blah-blah so he can see this!” There must have been a dozen of them standing there – taking notes, taking pictures. I begged for something to numb my eyes but was told that it just wasn’t possible. I asked what could be done and they told me to wait for the recommendations in the report. The report contained no recommendations other than a follow up visit to a local doctor for further evaluation.

Details. Details. Eye charts. Oozing. Pain. Eye drops. Ointments. Medicines that felt like acid burning my eyeballs with each dose. Prescription glasses (a ridiculous grasp at straws.) Scratching. Burning. An inability to concentrate. Infections from the ointments. Hot packs. Frustration at every turn when I could no longer thread a needle, read a newspaper, understand directions or see road signs. Bits of skin floating across the surface of the eye and in my line of vision inconsistently blurred every image in front of me. Sometimes it was like looking under water. Sometimes it was like looking through fog. Sometimes things were double. Sometimes they weren’t there at all. And I never got used to it. Trying to compensate was, as a dear friend once said, like trying to catch a piece if mercury with a fork.

Only from sheer desperation and force of will was I able to forge ahead.

I found a software program called “Zoom” that magnified every icon and font – every image – on the computer. I began the time-consuming process of using speech-recognition software. I had magnifying glasses and I asked for help and I learned to live without knowing a lot of things that I would have liked to have known. I wrote what I could to preserve some creative outlet. I listened to music and to books on tape when I could concentrate. After two years of steady decline, I just couldn’t face the prospect of losing my sight completely. I wasn’t even 40! I was a single parent living in a remote mountain location. And I couldn’t lose my sight. With so much lost already with the cancer and the divorce, all reason and probability was denied. Against any hope, I continued to push for different opthamologists. Against any logic, I held on to my quilting and beading supplies and I kept my car.

By the early winter of 2004, though, it was clear that I was on the wrong side of a losing battle to see. I am ashamed to say that I took as long as I did to admit it. Call it stubbornness or stupidity, but I railed against the notion of blindness. I simply could not face it. I want to say that I did not endanger people, including Parker, when I drove him to school but I think I may have. I could only drive with one eye open at a time, giving the other eye time to rest. I could make out the major pertinent information like other cars, stop signs and traffic lights, blinkers and break lights. I could see intersections and probably most pedestrians. But even that became impossible in one hellish, insane, surreal trip from San Francisco to Santa Cruz. When I think of it now I shudder. Thank goodness no one was hurt. Thank goodness Parker was not in the car. Thank goodness I made it home.

Losing the ability to drive, losing the ability to read, losing the ability to see people’s facial expressions, losing body language and movies and color and mobility. It was - ? – what can I say? Difficult doesn’t cover it. What would you do? How would you feel? It was freaking scary. It was infuriating. It was unfair and humbling and unimaginable.

“You have done everything so far. Now you will play the part of the blind girl,” my father counseled.

“But I do not have a script!” I cried.

“Then you will just have to ad-lib.”

He is a pragmatic Yankee to the core. And so, I guess, am I.

There are so many details. There are countless details of learning and adapting and receiving help from angels in the form of friends and family and people from church. I learned to navigate my home with no cane, how to use a white cane (a time consuming process), how to use bump dots on household appliances. I had to become accustomed to isolation. Books on tape arrived from the Library of Congress. Friends and Pk became my human guides. They filled out forms and typed my addresses in large font so I could see them. They read my mail to me and drove me around. Dollars were folded to keep them separate. I listened for people’s moods, figured out how to flirt without the benefit of body language. I had to adapt.

I am not sure how many times it took me, making a new mistake every single day, to get a decent cup of coffee. I spilled the dry grounds from the bag (ever try to sweep what you cannot feel or see?) I sloshed the wet grounds from the filter; I folded the filter over because I could not see it and had grounds in the coffee. I completely missed the tank and poured the water onto the counter. I completely missed the cup and poured the coffee onto the counter. I got the coffee in the cup but couldn’t gauge when to stop pouring so I burnt my hand. When trying to fill the carafe, I hit the faucet by accident and glass shattered as I broke down and cried.

“Have you thought of switching to tea?” my father asked.

No. If I was going to ad lib – I had to remain true to my character. And I drink coffee, damn it.

Labels: journey into blindness blind artist quilt quilter hope Boston Foundation for Sight proesthetic sclera lens