Just Where I Am

I’m typing this while sitting atop a brick red duvet, leaning back against a bright-purple down pillow. On the tv is a re-run of the Saturday Night Live hosted by Tina Fey (blogging troubador Furiousball best described her as “one of the women I’d like to lick the make-up off of” some months back); right now, Carrie Underwood, wearing some pleated and atrocious rip-off of a 1950’s cocktail dress, is belting Idol-style and shaking her unnaturally-golden tresses.

Other times, that screen features the mug of Bawbwa Wawters and her View Crew, Craig Ferguson making me contemplate adultery, and Dinosaur King rocking the youth on Saturday Morning cartoons. Oftentimes, the images on that screen bore rather than entertain, making me glad it’s rarely on.

My gaze wanders to the wall-hung quilt my mom made for Dinko (incidentally, the Niblet has also chosen the name “Paco” for himself; to my delight, I get to holler, at dinner time, “Get yer wee rounded tush down here for edamame and eggs, Paco Dinko”).

The fabrics in this quilt are from my grandmother’s old dresses; Grandma started cutting the pieces for the quilt before she died in 1974. My mom took over her project and finished it in 2007. I think it’s a Dresden Plate pattern, and I adore that my mom can sit in front of it and tell a story of her mother wearing a dress made out of the red-and-white gingham, of her mom making dinner in the flowered calico. I look at this quilt and am reminded my mom’s enduring devotion to her own mother. I look at this quilt and am profoundly grateful that it will follow my son into his adult life (Mom made another of these for my Girl, too, so no nattering about how maligned she is).

On the stand next to my side of the bed are a couple stacks of books. On the top of one stack is my reading lamp, which is meant for a desk and casts the beam too low for bed reading. So I’ve hefted the light up to the peak of a stack of five books: a Mrs. Piggle Wiggle (the kids do love hearing about The Showoff Cure), an advance reader’s copy of a book “coming in November 2006” (guess I’m running late); The Boys of My Youth, a Jo Ann Beard book gifted to me by my best reading source and finest galpal; The Wives of Henry VIII by Antonia Fraser, which I’m sifting through a second time, having just read the light fiction The Other Boleyn Girl by Philippa Gregory (boy, did factual history not restrain that version!); and a book of poetry, Mean Time, a Carol Ann Duffy volume gifted to me last Christmas by one of my favorite blog maidens, Glamourpuss. These are the books that sustain my light. In the other stack on my nightstand, I have my active-reading pile: Barbara Kingsolver’s Animal, Vegetable, Mineral; The Hummingbird’s Daughter by Luis Alberto Urrea, loaned to me by a highly-patient neighbor more than a year ago; and I’ll Drink to That, another advance reader’s copy–this one a story of the French peasant who brought Beaujolais to the world. All of these, plus five thousand more, are my posse.

Behind me hangs a big painting made by my kids one sun-dappled Fall afternoon almost four years ago, out on the deck. They made that painting on one of those rare afternoons when parenthood–when having young kids–felt as easy and gratifying as an episode of thirtysomething would have had us believe. Everyone was happy. Everyone wanted to be doing what we were doing. Everyone was in a groove, got off The Mommy, and painted. Even better, they painted their feet and hands and skated across the huge swath of paper I’d taped onto the deck. It was painting Olympics. It was my life as a highly-rated and -reviewed one-hour drama.

Over on Groom’s side of the bed is everything else, for he is not tidy. He gets the clock radio, as I don’t believe in keeping time or getting up in the morning. He gets the Kleenex box, as my nose shouldn’t run. He gets the stack of Presidents of the United States cards, the fleece “sleeping bag” that a stuffed animal is supposed to inhabit, the hand salve, the massage lotion, the condom wrappers, the cough drops. On the floor beneath the stand is a waterfall of Cook’s Illustrated and Gourmet magazines, fleshed out by a book of NY Times crosswords and a curious bit of non-fiction entitled American Shaolin.

All of this visual gratification inhabits one mere corner of our bedroom, one ten-by-ten foot space. Eleven feet out, there is everything else in the world: the desktop computer; the sleeping children (they of huge blue eyes and mouths that only get wiped when I notice the Oreo crumbs); staircase after staircase; uneven ground in the yard outside; cars that take us to new mundane daily tasks and big life adventures; the fifth largest body of fresh water in the world (two blocks from our house…it collects pack ice in the winter and sparkles with diamond dust in the summer); friends I haven’t met yet; traffic weaving helter-skelter across the asphalt.

It’s all out there: what I know intimately; what I have yet to encounter; the changes that will be wrought by future decades.

It’s all out there. For forty-one years, I have always negotiated the world with a certain confidence, even when I have felt a wreck. At least I’ve always been able to open the front door and take off on a restorative run, no route in mind, just winding and turning along new roads and paths, letting the alchemy of waving leaves and unexpected deer and Spring wildflowers turn my dross into gold.

But now, at the moment of writing this, I question my future as a place of easy confidence. Rather, I feel paralyzed by uneven terrain, by all the options and vagaries of the world.

Three weeks ago, my optometrist, after a series of tests, joined rank with my childhood optometrist, who noted when I was seven, “If your eyesight keeps up at this rate, you’ll be blind by thirty-three.”

Actually, the verdict three weeks ago differed a bit (she’d have to be a pretty crappy optometrist to examine this sighted forty-one-year-old and declare me a blind thirty-three-year-old); rather, her musing was, “How are you forty-one with glaucoma?”

At last year’s appointment, she’d noticed a not-completely-health optic nerve, but a follow-up test proved things were still within normal range. This year, though, she saw a notch in one of my optic nerves, even clearer in photos of my eyes then taken, backed up by a loss of peripheral vision in a visual field test.

The diagnosis was veering, rather frightfully, towards glaucoma. She wanted me to come back for a couple more tests.

In the two weeks of waiting for those tests, I put the poor Google through its paces. On the positive side, a diagnosis of glaucoma is no longer what it was 20 years ago: a sentence that one is on a steady march to blindness. In fact, there are ways to treat glaucoma these days, most often with thrice-daily eyedrops.

Of course, the eyedrops have possible side effects. Like darkened vision. Loss of libido. Depression.

So, should it prove to be glaucoma, it would seem that I can keep my vision, such as it is, so long as I’m willing to spend the rest of my life as a dried-up, flattened, stumbling husk of a gal.

During the follow-up tests two weeks later, the doc checked my eyes’ “superior ridge.” The resulting graphic print out shows a suspicious dip in that ridge. On the other hand, other parts of the testing look okay.

The bottom line is that the doc is reluctant to give me a lifetime diagnosis and start me on 50 years of meds unless everything points to glaucoma. Since only 2/3 of the results do, and since the vision decline is so glacial in pace, we’re in a holding pattern.

I’ll go back in 4 months and retest, and freak it if I can’t cram for or cheat on this one.

Trust me, between now and then, and for every day thereafter, well into my audio-book-rich dotage, I’ll treasure even the smallest glimpse of the fakey Carrie Underwood, the assiduously-maintained Barbara Walters, the loving quilt on the wall, the grins on the kids’ faces, the compost bin in the backyard, the puddles in the alley, the cheese melting on my enchilada, the birch trees flanking the trail, the toilet paper as it swirls down the hole.

I am suddenly and profoundly less casual about it all.





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38 responses to “Just Where I Am”

  1. Anette Avatar

    I’m so sorry! What a scary situation! You’ll have to suck in all the visual world around youfrom now on! If what you’re afraid of happens, then you’ll have it safe in your head, and if it doesn’t, and you’re ok, then you have learned how to notice things even better. Cross my fingers for you and sending good thoughts!

  2. Her Grace Avatar
    Her Grace

    Fingers crossed for good news in four months time and sending “feel good” thoughts your way. I hope everything swings in your favor.

    Brilliant painting.

  3. SuburbanCorrespondent Avatar

    Being blind can be pretty depressing, too; so I’d go for the meds…

    A friend of mine (at 42) is going through this, also (his pressures are at 30, I think) – but his opthalmologist just did some sort of (outpatient) surgery on his eyes which is supposed to buy him some time before he has to use drops. Not sure what it is, but it is supposed to bring the pressure readings down…

  4. SuburbanCorrespondent Avatar

    Oh, and I’m jealous about that gorgeous painting – thanks for letting me know that it isn’t an everyday occurrence around your house!

    Thirtysomething – ha! I haven’t thought of that show in a long time.

  5. Say It Avatar
    Say It

    This post is rather like going through Daniel’s Home at the holocaust museum. Everything is comfy cozy and warm and beautiful then its hard and cold and gets very scary. I want out, I can only imagine you do too.

    My fingers are crossed you get a good result in the next series.

  6. flutter Avatar

    I am sending healing vibes to you, love.

    That quilt tore me up, it is so beautiful and the history in it is just breathtaking

  7. Tai Avatar

    …I couldn’t even begin to imagine the thought…

    Oh, I hope it’s just a wee glitch on the radar.
    That quilt is to beautiful not to be able to stare at for hours and hours.

  8. Wendy Avatar

    That sucks. Isn’t being 41 fun? I feel like my body has begun betraying some days….

    Now that my older brother (43) handled stage 2 colon cancer (fingers crossed), I look at everything in terms of whether or not it’s fatal. We’re all too young for these problems!

    My mom said, what is going on with your generation? My friends who died young were hit by cars or trains!

  9. Bob Avatar

    I hope the percentages change in your favor within the next 4 months.

  10. oreneta Avatar

    Well shit. Sorry, but I think there is a time and place for these words, and this ranks. Good luck all round, and remember that just because the drops CAN cause those symptoms, it doesn’t mean they will

  11. citizen of the world Avatar
    citizen of the world

    Oh, Jocelyn. At first I was just enjoying the voyeuristic feling of geting to tour your room. But I’mso sorry about what prompted it and will keep you in my thoughts and hope it is not bad news from the tests.

  12. liv Avatar

    oh, babe. i’m sorry that you’re getting this scare. would it help if i sang “sha la la la la la la. i love you!”? i hope so. because i do.

  13. jess Avatar

    Oh no, I’m so sorry. What a scary place to be in.

    I’ll be thinking of you and hoping that you ace that retest.

  14. August Avatar

    Hold on, dearest Jocelyn. Let’s trust that all will work itself out. If you don’t, then I will for you.

    What a cosy home you’ve made. I’d sure love to cuddle up to such a meaningful quilt. I’m sure Paco feels his grandma’s love, and how special his mama is.


  15. Casdok Avatar

    Yes fingers crossed.
    I just adore your grandmothers quilt.

  16. Diana Avatar

    Of all the senses to be endangered.

    I’m thankful that if this is what is to happen, it’s both slow and treatable (and most don’t get those sucky side effects). Mostly, I’m a-hopin’ that this is just a wake-up and see the roses sort of thing and you and your blues will be viewing all that is beautiful and absurd in life as long as you have breath to draw.

  17. Glamourpuss Avatar

    Jesus, Jocelyn. That’s awful. Beautifully written, but still awful.


  18. Theresa Avatar

    Oh Jocelyn, that is scary. I’m sending good vibes all the way across the ocean right to your eyes. Hopefully, it will all turn out to be nothing more than a scare.

  19. Theresa Avatar

    Oh, and say hi to Paco Dinko for me. I just love that original name. That’s one creative little guy you have there. 🙂

  20. Chantal Avatar

    Lets hope that Glacial pace continues . I would be scared as well. Take Care of you, and enjoy all you can.

  21. SQT Avatar

    Oh man, from one blind chick to another, I hope you’re okay.

  22. HeatherAnn Fragglehead Avatar
    HeatherAnn Fragglehead

    I’m so sorry to hear about this. I hope that it’s NOT glaucoma. I can’t imagine hearing something like that at such a young age.

    I will keep my appendages crossed for you that when you are re-tested, it’s not looking quite so grim.

  23. Claire Avatar

    Your writing is a jeweled telescopic path. The eye thing is major suckage. You, however, have a great attitude and I will never complain about having to wear reading glasses again.

  24. Dorky Dad Avatar
    Dorky Dad

    AAAAAAAAAHHH! (That’s kind of like a muffled scream, not a full-on scream or a comment after a refreshing drink.)

    Thank God for modern health care that they can treat something like this, but that is no picnic. Good luck. And good luck in the months it’ll take you to know the definitive answer.

  25. Princess Pointful Avatar
    Princess Pointful

    Oh, Jocelyn, what a frightening and intimidating thing to just have to wait on. We’ll be wishing with you.

  26. geewits Avatar

    Oh my. My Granny had cataracts removed and something didn’t work just right (this was pre-laser surgery) and she never seemed to recover mentally from it. I don’t think the test’s results were correct about depression being the result of the eyedrops, that seems to be a result of loss of vision. I am so sad to hear about this and I hope everything goes your way. Like you said, things have changed. So many things that used to be “terminal” are no longer so. In any case, you will not be like my Granny. Come hell or high water, you will forge ahead and be a happy person. That’s just who you are.

  27. heartinsanfrancisco Avatar

    Jocelyn, this may sound crazy but you need to talk to your body and ask it to heal itself.

    I did that with a tumor for a month and when I was on the operating table with an IV running, the doctor discovered that it was gone. It never returned.

    Meanwhile, I’m sending all the healing energy and hugs I can muster. Good luck with the retesting!

  28. Claudia Avatar

    “so long as I’m willing to spend the rest of my life as a dried-up, flattened, stumbling husk of a gal.” Somehow darling, I can’t ever, ever, ever envision you as such. Regardless of the circumstances that life deals you. You are too full of magic. Remember that. Sight or not. You are perfect.

  29. cathy Avatar

    So many of the visions you describe are special to you because of the emotions and memories they evoke. These things will never leave you even if you lose your sight, apart from which the Jocelyn I have come to love through this blog wouldn’t be defeated, she would revel in the sound of birdsong and children’s laughter. She would savour the warmth of the sun on her face as she smelt spring flowers. She would listen to the crunch of autumn leaves and inhale the crisp fresh air of a nippy winter’s day.
    Jocelyns are adept at sucking joy from their lives like ambrosia.
    So I know that you won’t let fear of what the future may hold spoil your enjoyment of the present because that wouldn’t be a jocelyn thing to do.(((((HUGS)))))

  30. BeachMama Avatar

    Wow, that is a scary diagnosis. And a holding pattern is something I wouldn’t deal with well. On the good side, I can say that my Mom was diagnosed with glaucoma about ten years ago (she would have been 50) and was treated with drops. She only needed them for a year or so and has been vision perfect ever since. I hope that you get a proper diagnosis in four months so it can be treated properly.

  31. pistols at dawn Avatar
    pistols at dawn

    It’d be a shame to lose one’s sight in such a well-decorated space.

    I suppose there are other reasons, too, but if there were some sort of fairness in the world, I’d lose my sight, since crappy apartments and uninspired brick wall views aren’t quite so much to lose.

    Here’s hoping for you.

  32. AmyTree Avatar

    Little rollercoaster of a post, hm? Here I was all safe and happy and really enjoying your lovely bedroom tour (that quilt is a stunner) and the whammy… But that’s life, I guess – snug and secure and then surprising in every way.
    Best wishes for everything, and fingers tightly crossed for you.
    (And thank you for the inside look!)

  33. Maddy Avatar

    Four months of waiting! That would be more than enough to send me completely barmy. I can’t write anything that hasn’t already been written by other commenters but….

    Best wishes

  34. Dory Avatar

    I feel ya, sista.

    Docs told me that I will probably be full Deaf around the age of 50. I’m 35. I’m down to about 40%. I feel ya.

    That quilt is absolutely literally completely PRICELESS.

  35. lime Avatar

    i was enjoying the tour and wondering where it might be headed. that is a scary possible destination. it is understandable that it might knock you for a loop. certainly praying that you are not on the glaucoma trail. though regardless of the ultimate diagnosis i know you’ll never be casual about sight again. i also know that if the worst occurs (and again…certainly praying and sending all the positive vibes possible) that you will meet it with determination and not be mastered by it. (i mean you’re a spunky redhead who roamed all over a foreign country by yourself and whatnot….)

  36. Minnesota Matron Avatar
    Minnesota Matron

    Beautiful, appreciative post. The Matron knows the ways of the body, my dear. And vision. One year, she TAPED her eyes shut because they stopped closing on their own at night, a pesky little problem because the corneas can dry out and this will cause BLINDNESS. Losing the vision haunted her for months until she had the lovely corrective surgery. The culprit was Graves Disease. She continues to be vigilant, regarding the Body and its Potentially Premature Demise. Here is hoping that your dear precious eyes stay stable and clear.

  37. urban-urchin Avatar

    You have a beautiful home, a beautiful life. Nothing can change that. That said I am hoping and praying that your vision decides to behave properly at your next visit.

    I’ve been reading a lot about eye disorders this week so this post really hit home.

  38. Jazz Avatar

    Wow, even facing this, you write so well, taking us from a cozy bedroom to the awfulness you’re facing.

    Here’s fingers crossed for the 4 month checkup.

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