Because when you are proud of a kid...

I am going to do something utterly and completely grandmother-ish. 

How many times have we all posted something we regret? Even I, a stellar human being of high morals and character (those of you that know me, please put your fingers in your ears and quit making gagging noises) and exemplary behavior have, on a rare occasion, posted something that I  wish I had not. 

For me it is grammatical errors or perhaps a misspelled word slides by, quietly into the mystical land where nothing ever dies, forever haunting me, taunting me. HOWEVER; I know that many of you have posted worse, much worse.... really much much much worse. Backpeddle is the app for you then:

Because some images you can't take back

Oh yes, the star, the absolute Oscar worthy actor in this little youTube commercial is my grandson. 

The Percussive Nature of Aging

My fingers sound like castanets, my toes they follow suit.

My hips, each step a metronome, keeping time for creaky bone.

My ears they ring, my teeth they grind

And my knees are kettle and snare.

On occasion the music startles me, 

Who left  that duck call there?

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!

After the Storm

Clouds, yellow green and ominous cover the sky in its entirety. Five columns of black descend destroying everything in their path. They are thick, heavy, solid, dark and bent on destruction. I watch them, rooted in place and horrified by the damage they wrought. As the biggest, the blackest, the most solid bears down directly on me I wake with a start; my heartbeat shakes the entire bed. My breathing is shallow and I feel frozen to the bone even though I am well covered.

I turn toward the rock that is my husband, wrapping myself against his warm back, tucking myself into the curve created by his bent knees. As he reaches in his sleep and pulls me nearer still I begin to relax. Once the pounding in my chest and the blood rushing in my ears subsides a bit I can hear the steady loud chug-chug of the air conditioner a scant three feet away. I hear the noise of people that wander the darkness outside the window with its stiff bright orange, yellow and green curtains. The heavy covering for the old mattress a thousand people have slept on is folded and wrinkled and uncomfortable under my skin. The pillow is flat and not soft, not welcoming as a pillow should be. Instead it is a harder by the minute brick on which my head lays. Tear soaked and smelling like someone else’s laundry it is the pillow that finally drives me from the warmth of the bed and into the cold white tile of the hotel bathroom.

I realize I haven’t got any clothes except those I had on when the tornado destroyed my home, turning me into a weather refugee. The Red Cross had given us coffee and dinner and called around to hotels for me. A $75 dollar gift certificate redeemable just about anywhere had been pressed into my hand but I was too distraught and could literally not let go of my husband to go shopping. I feared if I did he would blow away, dancing in the sky waving to me as he rotated and flew off just as my wedding dress, my pajamas, my winter coat had.  

I drew a hot bath, scalding water, pouring the teeny bottle of body wash in it to make it feels smooth on my skin. I rolled up a towel and stuck it under my neck as a make shift pillow and sunk chin deep into the tub. I couldn’t hear the rattling AC unit in here, nor the whores outside, nor my husband snoring, sleeping well cocooned in the wrinkled and bleach smelling bed. I closed my eyes and began to drift off, again and again, each time being jerked awake by the wind, the malevolent wind. After the water cooled I rose, pulled on  my dirty clothes and slipped outside for a smoke.

Conundrum

I find myself, not for the first time in my life, with a conundrum (a paradoxical, insoluble, or difficult problem; a dilemma). I thought I would take the problem to my readers, my friends and family, and find out if what seem to be questions without answers for me is a simple matter with a clear solution for all of you. In short, I am picking your brains, I am ASKING for advice and we all know that doesn’t happen too often.

Allow me to set the scene.  As you probably all know by now, (I do, on occasion, whine about it) I am legally blind. ‘Legally’ because there is a clearly defined and recognized range of vision (or lack thereof) that makes life a pain in the patooty. In my case I top the charts at 20/400. 20/400 is the top range they measure because, really, after that point what difference does it make? 20/400 means that if a person with normal vision can see, say, a rampaging elephant, at 400 feet, that same elephant would have to be 20 feet in front of my face before I would notice it was there. Even then I would not say, Gee an elephant, but rather, What is that? Is that a building?  No, it moves! A dear? When said elephant was about 15 feet away I would be saying Holy cow! That’s an elephant! By the time the fact registered and my brain figured out I was about to be mowed down by an elephant on the little dirt road by my house where I almost never even see a car, said elephant would be scraping me out from between his toes and looking for some other blind sucker standing in his way.

I try to maintain a strictly controlled environment and lifestyle in order to live with this ridiculous issue. I can avoid furniture not in its place (most of the time) and unless I am having a really bad day I don’t walk into walls or anything. Stairs have an irritating way of turning into ramps and vice versa and I look at signs as a personal attack on me by whoever hung them in the first place. I do not drive (you can say ‘whew’ out loud, I know the thought of me controlling 1500 lbs. plus of metal and plastic at high speeds is terrifying) I do not go into strange places by myself, I avoid crowds because I do not want to lose track or whichever kind soul is my seeing eye person at that time. When company is coming I vacuum in all the corners because I just assume that cobwebs have invaded that space.

My family is invaluable to me when it comes to living a mostly normal life. They read print that is below 14 points, they either vacuum or offer to in a kind and gently way that lets me know my house is turning into a pigsty. They point out steps, ramps, and cracks in the sidewalk. They describe things to me without being asked. For example, one of them would say ‘Holy cow, that is a rampaging elephant! Run!’ And the best, the very best thing they do is act like I don’t have an issue at all. They assume that I can do anything I want to, until they see otherwise.

One of the things they have always assumed I can do is work, hold down a job and do it proud. And I have! I have worked so called real jobs since I was 19 and moved back to the United States. I have done just about everything a person could do. Before I went to college I held down jobs as a maid, a fry cook, a telephone sales person. I cut grass, and stocked store shelves. I worked in a gym, I typed up lunch menus for the local paper. I babysat, and cared for and walked dogs. Once I got a college education I worked on computers.

Working on computers, for me anyway, is much easier than say wrestling a neighbors one hundred pound dog into submission while keeping track of three toddlers on a 100 degree day in August in Georgia or cooking 2000 pieces of chicken in a hot as hell fryer in an eight hour shift. Computers are inside, in air-conditioned buildings and computer jobs pay enough that you can finally pay someone else to walk your own 100 pound dog. If I pull the screen to my face, leaning hunched over about two inches from it I can see everything I need to, to do my job and do it well. Of course I can’t get to where the computer jobs are without help from my loved ones, or complete strangers on occasion, and public transportation.

I have ridden with FBI agents in rattle trap old cars held together literally with wire and duct tape. 

I have ridden with Health Department officials who spent the whole long commute trying to tell me how to fix my eyes because they assume, I guess, that I stay blind for the fun of it (so annoying, I can’t even describe it). 

I have ridden with co-workers who have alternately spoken to their mistress and their wife on the phone while speeding and shouting invective's at passing motorist. Do you want to know what is scary? Having the person whose hands in which you have placed your life out of necessity screech to a halt on the interstate while cursing and threatening some other jackass who also screeched to a halt. Blind woman, never driven, sitting in a lane of traffic while cars zoom past at eighty miles an hour honking and yelling watching two fools duke it out on the roadway in front of her.

As I am sure you can imagine I have not always been able to get a ride into work. My employers, a state agency much reviled by the general public, have worked with me without question and without too much resentment for 15 years on this issue. Oh happy day when I was allowed to do my work at home. I could log right into the system and write my code, run my queries, design databases and develop mailings, make calls, email, everything that I do at the office. Being at home means that when my eyes start to burn and water from fatigue I can walk outside for ten minutes and give them a rest. Being at home means that I can work late or log in early.  Being at home means that I can work nights and weekends if necessary. Being at home means that I can work when the office is closed due to inclement weather or water main breaks or bomb threats (much reviled agency). Being at home means that I can avoid the flu when 2/3rd s of the office staff is sneezing and snorting and coughing and choking all over each other.

And now, finally, we reach the crux of my conundrum.

Three weeks ago I was notified that no one would be allowed to work from home any more. This turns out to not actually be the case but I guess they thought it sounded better than your particular group will not be allowed to work from home anymore. Being reasonable I went to my boss and said, boss, you know I need to work from home sometimes for many reason, all relating to my (Lord I HATE this) disability. I can’t drive so unless the stars align and my husband can get me to and from my bus I can’t come in. (I was still smiling at this point.) NO. Boss, you know I have 15 years of good and excellent reviews with this much reviled agency, I am always available when teleworking (duh, I can’t drive dude, where else will I be?) and always get my work done. NO. Boss, you know when I am in the office I sit at my desk because roaming around is a bit difficult when you can’t see. I never deal with the public. I always deal with my users by phone or by email just like when I am home. NO.

At this point, I admit it, I lost it just a wee bit. What the hell? I demanded a reason and got the following: People think it isn't fair. Oh really? You want fair? Let them all coat their eyes with petroleum jelly for 54 years and try to manage. That would make it fair for me. The final result is NO NO NO NO NO. If I can’t work from home, I will not be able to keep this job.

Okay. I can quit and apply for disability. I qualify too, due to the whole rampaging-elephant-toe-picking thing. I mean, let’s face it, I really do have a disability, as much as I try to deny it. Working is a pain in the behind and eye balls and just getting me there and home involves a lot of people whom I do not really give a choice to. I would have some income and a lot of people could quit organizing their schedules around me.

On the other hand, I have always worked. I started babysitting and dog walking when I was 12 for God’s sake. I pay my own way, and except for in the very worst of times I manage to do it pretty well. I don’t like working but I do like getting that paycheck which I earned, despite my handicap. I am terrified of being utterly dependent; it goes completely against my grain. I have paid into the Social Security system all of these years but somehow I thought I would be old and (more) gray before I had to collect.

What to do, what to do? I am asking here for advice, for possible courses of action. What would YOU do in this situation?

Its that time of year again!

Join us in Piedmont Park November 3rd for the American Foundation for Suicide Prevention Atlanta Community Walk.

Team Henry Roger Gramme

PTSD Or, As I Like To Call It, Hell On Earth

Post Traumatic Stress Disorder is not for sissies. Imagine the worst, absolute most horrific moment of your life. Now imagine living it over and over and over. Living Color, smells, sounds, the whole 9 yards. The movie you never want to see again on an eternal loop in your brain. This is my best explanation for PTSD as I know it.

I am not speaking for anyone but myself. I hope it isn't like this for others but I really do not know. If it is high five and a shot of tequila to all of you. You deserve it.

The source, or sources, of my particular hellish state of mind are the death of two of my children. 34 years ago I awoke lazily, the sun shining through the blinds across my face. I stretched luxuriously and then realized something was horribly wrong. I jerked up, ran to the crib in the corner and touched the stiff cold back of my 2 1/2 month old son. I saw his purple face, frozen in a grimace, white spittle on his chin.

I was in a state of shock for four days. Family was called, arrangements were made, leave was taken. I could not look at my daughter without crumbling but I felt split in two. The part 'dealing' with it, and the part that was frozen in a block of ice that I feared would never melt. Not sleeping was my only option. If I closed my eyes I found him again, and again, and again. I never knew a head could hurt that much. I never knew there were that many tears. Every night for years when I lay down I would see him swimming in front of me, my glorious little fella his lively smiling self and then he would turn blue and cold. I woke to that same panicked sensation every day. Every single day for about four years I knew no peace.

From time to time throughout the years that little blue face would come back to haunt me. I would wake in the middle of the night, that vision in my head, my heart pounding so hard the bed would shake, tears streaming down my face and my own choking sobs sounding like the wail of all the dead in my ears. My life was busy, my other children growing and changing and LIVING kept me occupied during the day but the nights and early mornings were a descent into a painful swirl of dread and fear and pain all over again.

Who do you discuss that with? Psychologists wanted me to talk about it. I would sit there and say yep, I feel terrible, I feel worse than terrible. I still see him, I hear him, I feel him but he turns cold every time. What is there to say after that? What do they want to hear? Talking about it doesn't change it. Bringing it out in the open did not lessen the terrible sense of loss and overwhelming fear that accompanied the visions. I knew why I felt the way I did and it didn't take a lot of education for me to decipher it. Over time, with the help of my growing brood the fears and panic attacks eased bit by bit. I still saw my boy, still saw the grim blue visage ut I had wonderful images too, they swirled together making the awful ones easier to bear.

In August 2008 my youngest son took his own life. He put a gun to his head, right in front of me. He looked at me with the saddest, most sardonic smile, he shrugged, and he pulled the trigger. I had turned away I couldn't reach him, my husband was trying to get there but we were both mired in the quicksand of tragedy while he seemed to be in fast forward. I will never forget his smile at that instant. My husband begging and crying, my son's girlfriend shrieking and screaming and falling to the ground. I made the call to 911. I remember the lady asking where he shot himself, and I kept screaming his head, his head. She wanted a location.

It took him two days to die. Two days for us to say our goodbyes. He was conscious but on a ventilator, his spine shattered just below the base of his skill, his poor destroyed head and face swathed in rapidly bloody bandages as he tried to nod in answer to our questions. do you want to die? Do you want to turn off the machines? Repeating over and over that we loved him. You really cannot say it enough, ever, and certainly not under those circumstances.

I found out that the hospitals have Ethics Committees. We can't get congress or our state legislature to go for ethics committees but hospitals are all about it. The question was, basically, is it ethical to let someone who tried to kill themselves die.

We explained how tortured he had been, how his mind was so far in another dimension most of the time that to leave him with the only truly alive thing being the one thing that made his existence sheer living hell would be the cruelest thing any human being could do to another.  I still thank God daily that the doctors listened to us. They spoke to him, they gave us the go ahead. to remove the machines.

We were a crowd. I couldn't touch him. Not because I didn't want to, but because he could not feel anything and I did not want to touch him without him knowing. It seemed almost criminal so I didn't. We spoke to him, we told him it was okay, that God and his grandmother and his big brother were waiting for him. We watched the monitors as his heart went crazy for a minute or two, then slowed and stopped. I ran away.

The moments that haunt me are not these, not his dying moments, but his last truly alive moments. The gun being raised and that horrible sad sad smile. They come to me morning and night. They come to me in the darkest nights and the sunniest days. They come to me when I least expect them and bring me to my knees with such loss, such sadness, such hatred for the moment that stole my boy away from me.

I can talk about it, but like before, it doesn't change the fact and the fact is a soul killing one. That image twists like fog in and around all the good memories, all the good times, all of the pleasant moments in my new normal.

I wrote this because today someone made an offhand remark and I found myself fighting the demons again. One second everything is fine and the next I am fighting to stay afloat in the sea of despair that is my loss. That image comes unbidden and I just want to run away but I know I can't. I wrote this instead, to allow my children to walk this earth for a moment again, and to help myself to breathe.