What's That Growing In Your Head?

For various reason, none of them having to do with common sense or regular health care checks I went to a neuro-ophthalmologist so that I could get an official letter which says in short "She really, really, really can't see worth a damn. She has not been faking for 54 years so cut her a break."

I HATE going to the eye doctor. I have a rare genetic condition so they always get all excited, put me through a multitude of test to prove yet again that my vision is laughable, charge me an arm and a leg, demand follow-ups and gleefully rub their hands together in a Simon Legree sort of way while they say "Whoa Nelly, your eyes are horrible and there is no fix. Sucks to be you!" If I hadn't needed the letter for work I would have happily gone on, staying in familiar places and firmly holding on to my seeing eye people for the next forty or so years.

I arrived begrudgingly, agreed to a test that maps one's vision with a curt nod, sat in a horribly uncomfortable chair with my chin in a cup and my head in their machine and waited for tiny lights to start zooming around, clicker in hand. When you see a light, you click the button. This is simple.

The woman helping me was sweet and quiet for a minute and then asked did I not see any at all. 

"What? What? You started?"
"Just click the button when you see the light flash."

Crap. No lights, I stare straight ahead willing the little points of light to appear. As if by magic three or four bright flashes appear in a row, top left, click click click. Then, nothing.... 

Quick! three or four bright flashes appear in a row, bottom right! Click click click.... I do an extra click just in case I miss counted.

Nothing! I can't cheat since I do not really know where or when the flashes will appear, but I would, if I could. Test over. The lady is now smiling at me with a touch of pity. 

"You did real well."

Liar! I want to beg to do it again. I stare balefully at the machine, sitting there like a piece of modern sculpture, taunting me. I want to cry.

The last time I did this test the map it made of my eyes looked like a target, circles of no vision radiating out like waves from the center. This time it looks like a butterfly, with the wings and body having no vision at all. It looked bad, and dark and absolutely terrifying to me.

My vision sort of resembles this Rorschach ink blot

The doctor, wasting no time, not being gleeful and not rubbing his hands together says, "Yep, you definitely have  genetic neuro-scatomatas. HOWEVER..." 

I feel myself shrinking.

"Usually when we see this 'tubing' it is caused by something pressing against the optic nerves"

I shrink more. I feel like I am six.

"Usually an enlargement of the Pituitary glad. Maybe surgery is an option. We can't fix the genetic defect (No shit Sherlock) but sometimes reducing the pressure can help to return the vision to it's pre-swelling state."

I feel like a toddler walking out, lost and alone, looking for my sister who has driven me here. Everybody in the waiting room is acting like nothing has changed. Everybody in the waiting room is reading, toe tapping, finger drumming, waiting to get their new prescription and get in their cars and drive off into their normal life. 

The right side of my brain is saying "This is bad, this is serious, this is NOT GOOD" The left side of my brain is saying "Oh look! A butterfly! (Here the left brain shrieks and makes an about face. I suddenly do not like the looks of butterflies) I want a cookie, maybe a couple of dozen. Isn't the sun nice! What shall we cook for dinner? I like red, it is such a pretty color. That machine has a nice rhythm. Doodly doo doo doo doo doo."

By the time I got home my right brain was speaking in a much firmer tone of voice... "THIS IS BAD, THIS IS SERIOUS, THIS IS NOT GOOD!" and the left side had retreated into a corner, fingers in ears saying "LA LA LA LA I can't hear you" but had given up the good fight. I turned to Dr. Google and looked up swelling in the pituitary.

I read a lot of articles, spending roughly three hours on different sites but the end result was always the same. TUMOR TUMOR TUMOR. Oh crap and eff me.

The good news? Tumors in the pituitary are self contained, not malignant. Bad news they can only be treated by radiation or surgery, and the underlying cause can be treated, sometimes, depending on what it is. I was not a happy camper.

I am having two MRIs this Monday, one with contrast, one without. I am hoping (Yes, with my left brain) that this has all been a giant scare and that the next time I take the test from hell I will once again have lovely targets of blindness and the evil tubing will be gone. Wish me luck!

Living the Van Gogh Life

I was sitting out on the front porch yesterday evening with my husband. He was pointing out beautiful birds in our yard which I was pretending to see.  Red birds, blue birds, buntings and starlings and thrush moved from pine to feeder to oak to bath and back to feeder again. I could see the motion when they moved from one place to the other. The titmouse has a way of fluttering its wings when it moves about that I can hear from 50 feet away. It is like a humming bird and I love it. I could see the huge lazy shadow of the buzzards riding the Indian summer heat over our heads. I just couldn’t see the birds, or the feeders for that matter.

I looked out over our yard and I realized my landscapes have become those of Van Gogh. Beautiful colors, swirls and whorls and dots that represent definable shapes but have no strict definition. No red birds or blue birds or thrush darting about, no flowers or chipmunks or squirrels are enjoying the evening as we are. I hear a vehicle roll by at 250 feet but couldn’t tell you anything about it. I can’t see even the motion any more at that distance.

 

I love Van Gogh; this is not a terrible state to be in. I do worry about what comes next though in this interminable process of losing my vision.

I used to know my family by the way they walked, turned their head, held their shoulders or moved their hands. No more. I have to be within ten feet of them now to be sure they are who I think they are. This frightens me on two levels. One, and this is the big one, I do not want to NOT be able to see the faces of those I love. These people are why I am here! If I lose them I will feel adrift and frightened. The second, which is really still the first but seen from a different angle is that I can’t see! I already can no longer ride a bike alone. I move faster than I can decipher obstacles like trees, curbs and psychotic killers. I am now afraid to walk alone because I no longer see well enough to see anything approaching, like dogs with foaming mouths and rabid foxes and psychotic killers. You can interpret this two ways… either I am just a scaredy-cat or I read the news and know that there are indeed rabid foxes, vicious dogs and psychotic killers whether one lives in a metro area or the heart of the country as I now do. With my track record for one in a million happenstances, (tornados, pregnant while taking the pill with my tubes tied, etc.), I choose to avoid them whenever I can.

For now I enjoy the hell out of my impressionist’s yard (people pay hundreds of millions to hang a slice on their wall. I LIVE it baby). The fluid lines and melting edges and glorious colors titillate and soothe by degree. The morning I wake up in a five year olds watercolor, splotches of color running together into browns, lines obliterated and subject up for anyone’s guess will be a sad day for me, I think, maybe not. I will have color and light and God willing my lovely and loved seeing-eye-people to help me navigate it.

Vincent Van Gogh (Duh!)

Night and birds by John Scott's Photography (my hubby, in my front yard.)