, , , , , , , , , , , ,

I was the first kid in my class to get glasses. A lot of kids would’ve been bothered by the Four Eyes comments, but I wasn’t, because I could finally see the blackboard without having to squint and I could do my homework in half the time.

I can remember to this day the revelation of the new world given to me with that first pair of glasses. Edges were clean and crisp, colors were bright, faces and shapes had definition (oh, the subtleties of glances and facial expressions that came with everyday interactions!), shading, highlights, laugh lines and wrinkles, conspiratorial winks and rolls of the eyes. More significantly – to me anyway – letters on the pages of my books seemed to have been super-charged with swiftness. The words flew by as I read with a speed like nothing I’d experienced before. It was as if I suddenly had been bestowed with the superpower of extra-accute vision, when, in fact, all that had happened was the correction of my formerly deficit vision, enabling me to see the way most people do.

What was normal to others was extraordinary to me; what I found miraculous was unremarkable, quite commonplace and completely without regard to everyone else around me.

When I was really little my Aunt Helen and I would lie out in the soft green of the yard and play that game where you make out animals and objects from the clouds. During the period of time between my vision blurring and getting glasses, all I could see was a hazy white against the broader blue. I would make guesses, but where before there had been hats and elephants and even chicken pot pies, everything up there now looked like milk spilled on top of a cornflower tablecloth. So I made a lot of wild guesses, most of them wrong of course. I also made excuses for not playing the cloud game at all – too hot, ants, too cold, don’t feel like it – because I didn’t understand why things looked different. I couldn’t comprehend why the sky wasn’t drawing pictures for me like it used to. I still remember the betrayal I felt with that sky’s refusing to “talk” to me.

And I remember thinking I must’ve done something wrong. Aunt Helen was right next to me in the carpet of grass, our hands entwined between us. Why else would the clouds dance into images for her but not for me? Which is why I think I didn’t tell anybody right away, that I couldn’t see the things I used to see. I knew if someone saw things that weren’t really there it was just as bad as hearing phantom voices, people would think you were crazy. So it reasoned to me that not seeing what everybody else could see might be a sign of sickness too. I didn’t want to be sick. Or different.

When I was diagnosed with MS in 1998 I was given a pamphlet that entailed what I might be able to expect in the coming years with regard to symptoms, but there was nothing in the little accordian fold-out pages about my eyes; no doctor ever mentioned my vision. In retrospect (pun intended), I have to say that it would’ve been really nice to have had a head’s-up about that.

I’m a writer, yes, but even more than that I’m a reader. Books – stories, poetry – have always been the means by which I cope with whatever life throws at me. Aunt Helen is the one who taught me to read and instilled in me a passion for books. Far beyond teaching me the mechanics of letters, words and sentences, she demonstrated the way to allow yourself to get swept up and carried to another world – the universe, the journey, of the story. Which is to say that she gave me the key that forever unlocked my imagination, and the courage to open the door and cross that threshold whenever I wanted to. Most especially, when I needed to.

Aunt Helen was a wise woman about life. She knew that oftentimes the best versions of adventure, education, community, family, celebration, escape, reckoning, and healing, are found within the covers of a book. She knew firsthand about poverty and sickness and tragedy; she knew aloneness and loneliness and grief; she’d tasted the sweetest joys, triumphs, loves. She believed that in stories one could revel in the experience of happy endings and healing and riches, in love ever after. And, if the story went in ways too true to life, therein could be found like-minded and like-hearted company – traveling companions. Toward the end of her long life she was famous for saying, “At least I can still see to read!” Her sight was her lifeline to reading, which was, in essence, her lifeline.

I am not actually related by blood to my Aunt Helen. She was one of my mother’s better girlfriends who became my babysitter, who became my best friend, who was, truly, more a mother to me than my mother was. I am my Aunt Helen’s child especially when it comes to reading and books. So, if you’re able, imagine what it’s like for me when MS decides to play about with my vision, leaving me unable to read. (Or write, because writing is recursive – we read over what we’ve just written in order to better write forward.)

And in addition to that story-barren island where poor vision leaves me exiled, the things and people of my world are muddled and dimmed, colors bled out and away, leaving a smeary, half-tinted version of everyone and everything. Forget those smaller (but louder and clearer) cues found in eye contact and facial expressions, because at times like these unless we’re sitting right next to one another I cannot even tell if you’re looking at me or at something behind me, someone to the side of me. I can’t tell if Denis Leary’s Tommy Gavin on Rescue Me is giving one of his famous Oh-crap-I’ve-been-caught-in-another-lie-Think-Fast! expressions or if he’s giving the expression that’s meant to distract with its devilish charm so that the woman in front of him will be so overwhelmed with Irish wit and the rugged, heroic, sexy handsomeness of bad boy firefighter that she’ll swoon her way to forgetting about the complete lack of logic that his excuse (and his history of behavior) betrays. So, while movies and TV shows are the next best sources for story when you can’t see well enough to read, the drawbacks that apply to interactions with everyday people and places and things also apply to the television and movie screens, unfortunately.

Think about it. Think about how much of what is conveyed – of what we perceive and understand about the world around us, everyone with which we engage – is dependent upon and derived from what we see.

Now imagine that you can’t see. Or can only detect partial, unfocused versions. It’s not blindness, but a kind of seeing that isn’t right or clear or true. When you can’t see what most everybody else sees, when you cannot depend upon the cues and clues you’re used to relying upon – that you take for granted – in navigation and communication, well, what then?

In my experience, the “what then?” is that you learn to see in different ways. Yes, in part with your other senses, as the old saying goes. I cannot deny that my hearing is in superpowered listening mode during the periods of diminished, altered seeing. But it’s more than simply listening “harder.” It’s really about listening more completely, being still and quiet enough to hear all the varying shades and highlights in tone of voice. Other senses aside, when I cannot see well because MS is wreaking havoc with my eyes, there is another kind of seeing – a different version of traditional vision – that emerges.

Light, especially, takes on new meaning, new roles. There seems to be too much or too little of it. But it’s playful, stunning, startling. Light, of course, gives us what we see to begin with. But in these new sights, light behaves like a carnival, like Halloween, like a shy toddler, or sometimes a beauty queen. In regard to color and hue, it behaves like a magician performing in Alice in Wonderland where no rules of logic or the principles of cause and effect apply. But it dazzles. Did I mention that? The light dazzles every bit as much as it dizzies. More so.

How to explain this? I’m not sure what I see from my MS’d “point of view” lends itself to verbal articulation, but I’m endeavoring to suss it out. Partly because this different way of seeing the world came into conversation with some lovely folks I met recently at the TEDGlobal simulcast event last week. The gentleman, his wife and son are coordinating a TEDx conference in The Woodlands and the theme they’ve chosen is The Kaleidoscope Mind. When I asked him to tell me more about that, his response included the terms “pattern-seeking,” “unique perspectives and experiences,” “playful,” “imaginative,” “beautiful.” The first thing I thought of was the unique ways in which the vision ailments brought into my life via MS are accompanied by so much unexpected, unconventional beauty, and I told him that. Or I tried, at least. But, I’m not sure it translates to the spoken.

And yet, that’s my job, my calling and my mission, as a writer.

Hence, the reason I’m delving into seeing and vision: what we can’t or don’t see, what we see when we’re not looking, what we look at when we can’t see, how we receive what we perceive. I already know the theme or “moral” of the story, but knowing it and explaining it are quite different things. What I know, is that because there are times when I’m unable to see well, I’m given the opportunity to see with another kind of vision. It’s wonky, like so many other experiences that I have by way of living with MS. It’s not a “better” vision, this wonky vision, but it is a different, additional, kind of sight.

How can that – one more way of seeing – be bad?

When these MS-induced symptoms visit my vision, I do not see what you see, because I’m not able to see THE WAY you see. Which means that I’m allowed to see something you cannot see. Maybe even something you will never see. In a way, your healthy vision is a handicap that prevents you from appreciating the beauty that my disability enables me to perceive.

I wish that I could hand you an MS-wonkified kaleidoscope to let you see what I see. Because while, yes, it’s often frustrating and isolating and confusing, it is also rife with sights previously unseen, not afforded by unhampered vision, unaccessible through the perspective of clear and healthy sight.

It’s kind of like I get to explore a landscape you don’t have a passport to travel to. Lonely, sure. But still quite a trip. And I figure that whether I’m in the midst of the vacation from hell or the vacation of a lifetime is all up to me, all in how I “see” it.

In my next post I’ll have some examples for you. Some stories of what it’s like to see when you can’t; examples of what is perceived when what you’re perceiving isn’t actually there; some thoughts on opening oneself to “wrongness” and giving oneself over to the wonkiness to allow the experience of the warped to unfold – to perhaps re-fold, origami-like, into an experience of wonder.

Lesser, distorted sight can be a dark curtain, crossed with a pattern that disorients, a barrier that blocks you from what you want, what you know and are comfortable with. Not seeing well, I’ve discovered, can also be a lense which reveals what could not be appreciated otherwise.

That curtain, if you step a little closer, open your mind a little further, might have just enough opacity that you look out, through the wonky pattern, and glimpse beauty that nobody else around you is able to see. I think that makes it yours – your very own, private, personal, singular beauty.


I only have till November 21st to reach my fundraising goal and I really, really need your help!


In the meantime, here’s how the organizers of TEDxTheWoodlands describe their event: “The theme for TEDxTheWoodlands is Kaleidoscope Mind. Our amazing speakers come from diverse backgrounds and experiences, yet they all have in common minds that are pattern-seeking, playful and multi-faceted. They have an uncommon ability to draw upon their unique experiences and capabilities in playful and imaginative ways, to discern patterns in their professional and personal lives, to derive meaning from them, and to create new patterns to enrich their world. They all have Kaleidoscope Minds.”

If the theme of TEDxTheWoodlands sounds as fascinating to you as it does to me – or if you simply want to come meet Luke, famous super service dog :0) –  then make your way here to register for an event that’s sure to be awe-some and inspiring.

The Woodlands, btw, is just north of Houston proper, and easily worth the drive from Dallas, Austin, San Antonio, Galveston, etc.) In fact, if it weren’t searing hot here in Tejas I’d ride the trike over for the day, maybe let y’all take a test ride. But it is Hades-like temperatures, so I think I’ll stick to more traditional commuting tactics for now. That said, if you like to cycle you might consider bringing your wheels along for after the event. There should be a good two hours+ of light left, and the hike and bike trails in The Woodlands are gorgeous, clean, and rife with forest shade and cool.

Maybe we should plan a group TEDride? Let me know; count me in!


Did you notice that I *finally* learned how to properly insert a link?

Fancy that.

Old dog, new trick, and so forth. (. . . and there was much rejoicing)


I only have till November 21st to reach my fundraising goal and I really, really need your help!