Of Defects and Genes

I finally got the call I've been waiting for. I haven't mentioned that I was anxiously awaiting a call because I was anxious about it and a little bit worried that I may jinx the outcome by writing about it in advance. I know, but I am superstitious. I can't help it.
See, a few months back the eye specialist that I saw at the Cleveland Clinic asked me to meet with a Genetic Counselor, so that they could study my genes and try to determine if the eye disease that I have, Retinitis Pigmentosa, is occurring as part of a systemic disease process, or if it is occurring only as an eye disease. Apparently, they were concerned that I had symptoms of the systemic type issue, and that I was in danger of things like kidney failure, lung and heart issues, and a few other not so pleasant complications.  It turns out that I do not have the systemic disease. That is a good thing. That is a very, very good thing. But the counselor did tell me that they found a particular mutation of my BBS5 gene that has never before been found or documented. She was pretty excited about that, but she said that this mutation was not so severe as to cause the systemic disease. So it turns out, after all these years I finally have proof that I am, in fact, quite unique!
Actually, we all have mutated genes. Some of the mutations cause problems, ranging from severe to minimal, others are completely irrelevant. The problems arise when we have two sets of really, really defective genes. Then we get whammied with things like going blind when you're in the prime of your life...But hey, I'll take that. It's not as bad as what other mutated genes would have caused. I feel lucky, actually, that I didn't get super whammied with any number of those other issues.
Anyways, now they need more blood from me to be able to get in there and pinpoint which of the thousands and thousands of forms of Retinitis Pigmentosa I do have. So far, all they can tell me is that it is one of the recessive forms. Sigh. So the wait continues.

The Plan

It's been over three years since that doctor placed his hand on my back and said, "You have maybe 5-10 years left with your sight. Travel. See what you can see now. Don't wait. And don't let anything stop you."
In that time I have come to accept that what he said is true, and that my time left for seeing the world around me is greatly shortened. I've found a lot of others who have this retinitis pigmentosa, or RP as we call it, and have formed a bit of a camaraderie with them. We are all navigating this path of vision loss and ensuing blindness together. Some of them are further down the path than I am, others have not yet made it to where I stand. Collectively, we draw on the experience, strength, and hope of each other.
In talking with, chatting with, facebooking with these good people, I've found that we are quite an interesting and diverse group. From housewives to physicians, from gardeners to engineers, and from artists to I.T. professionals...we span every demographic imaginable. And it occurred to me, these people have stories.
We do.
We have stories of how we came to accept or in some cases detest our vision loss, of how we managed to cope in a world that does not understand vision loss, how we reinvented ourselves to accommodate our vision loss, and how we found each other through modern technology and social media.
And then it occurred to me that someone needs to tell these stories.

photo courtesy By Vítězslav Válka (http://www.pixmac.com) [CC-BY-SA-3.0-cz (http://creativecommons.org/licenses/by-sa/3.0/cz/deed.en)], via Wikimedia Commons

So here's my plan.
Over the next year, I'd like to gather enough funds to be able to take a cross-country journey via RV with The Wifester and Sally Sue. I can kill two birds with one stone, so to speak: I can see this country like I've always dreamed of, and I can meet some of these wonderfully interesting people who share this experience of RP. The Wifester can take photos of our journey, because if you've spent much time around this blog you already know that she is quite the brilliant photographer. I can live blog my adventure, so you can follow me as I have this experience. And in the end, I'll produce a book of my journey and of the stories of the folks that I met along the way. Plus, I get the opportunity to paint landscapes in the desert like I've dreamed of for years and years. And The Wifester and I get to see this great country of ours together.

That's the plan, anyways. I'm still in the very early planning stages, but I think I have to do this. I need the journey, and these people's stories need to be told. 

*If you are one of my fellow RP'ers, and you would like a visit from The Wifester, Sally Sue, and I, please contact me either via this blog or via facebook, and we'll talk about the plan.

Of Blind Girls and Dog Poo

Though I'm likely never to forget that Memorable Memorial Day of 2008, each year I try to put it behind me a little more and a little more. Today I need to prepare the yard for the Wifester to cut the grass, and in an instant I am taken back to those horrible memories.
But almost as horrific as that day, that scene, is the realization that I, the "blind girl", have the duty of going into the yard to scoop the dog poop. And mind you, we have a new upstairs neighbor who also has a lab mix, Daisy. So my job is to locate, extract, and dispose of the pooh of three quite large dogs, all while doing my best to avoid stepping in any of it. If I keep my head down and my eyes on the ground, I can see my feet, but not both at the same time, so that window is pretty small. Or rather the window of opportunity for a smelly disaster is quite large. Either way, it is not a job I am eager to embark upon. Hence my presence here, with you instead. Oh, I tell myself that I am waiting on the coffee to kick in, but the truth is I am, simply and honestly, procrastinating.
Don't get me wrong, I love being in the yard. I love to garden and till and plant...but the minefield that is our yard is treacherous to navigate, even for a fully sighted person. Still, the job must be done, and since I apparently can not, nor do I want to be trusted with the task of mowing the yard, especially after what I saw on that Memorable Memorial Day, I suppose my contribution is limited to me putting my big girl panties on and heading outside to scoop the poop. Besides, I do have the Cadillac of poop scoopers. 

See. Isn't that nice? My hands get to stay clean. Hopefully, if I'm very, very careful, so will my feet.

What's on your agenda today? Yard work? Barbecue? Both?

The In Between Place

Learning to adjust to my vision loss is an ongoing process. I have found that using the blasted white cane given to me by the National Federation of the Blind has been quite useful, as much as I hate to admit it. I really try to overlook the sideways glances I get when I'm walking down the street with it. I realize most people are simply curious. I always was before I began to experience this thing, this retinitis pigmentosa, this  slow but certain death of my sight.

I always thought I was just clumsy. Everyone did. My nickname as a kid was "Fumble butt". I wondered how everyone else seemed to get in and out of movie theaters without holding on to the hand rails and searching, searching for each step. I can't count the times I tripped and fell or nearly fell in a movie theater.

I remember as a kid my mother would tell us to be home at dark. I was always home long before my brother or neighbors considered it dark. 

I remember struggling to take notes in the classroom when the teacher had turned down the lights in order to use the overhead projector. (Yes, I'm that old. I remember overhead projectors.) I never knew how everyone else had notes that were neatly written, in the lines, and cohesive. Mine were scribbled, traipsing along, going over and under and back over the lines of my wide ruled paper, often trailing off to one corner or another. I could never see those lines to guide my pen. 

But I digress...

The cane. 

Before I truly understood what being "partially sighted" meant, I saw people with their canes and assumed, wrongly, but assumed that they were completely blind. I wondered if they could see anything at all.
Light? Shadows?
Was it pitch black in their world? Was it all white?
I wondered.

As my field of vision gets ever narrower and as my world, at least the world I see, closes in and gets smaller, yet smaller, I find myself in this strange place. Not quite blind, and not quite sighted.
I land somewhere in between. And that seems somehow apropos. I've always landed somewhere in between. Not all white, not all brown. Not all girly-girl, not all tomboy. A few popular friends, a few outsider friends. I never completely fit in in any one place. And honestly, I've always felt a bit more comfortable in that in between place. It's what I know. It's comfortable. I can indulge both sides of my personality there. I can lean left and then right, and always land somewhere in the middle, on what for me is solid ground. 

The cane has fallen right in step with me in that in between place. Some days my eyes are strained, clouded by a thick gray or sometimes white-ish film that veils the world from me. Some days they are showered with "floaters" that make it quite difficult to determine if I'm looking at something real, something there in the world in front of me, or just an imaginary nothingness that my eyes and brain have colluded have produced. Some days my eyes are clear, and I seem to see just fine, until I realize that I only see through a peep hole, while the rest of you are looking through a bay window. Always, though, my eyes see bright, swirly, spirally lights that pulsate from their centers, enlarge, and then recede.
It is because of all of these things that I choose to use the cane. Not because I can't see anything, but because I see differently. Some days I feel confident and choose not to use the cane. Other days, I make no doubt about it, I need it.

I'm finding my footing now in this new and ever changing In Between Place, both figuratively and literally. And I look forward to an ever changing world ahead of me. I know I will miss some things, but I also know I will learn new things, and isn't that what it's all about? Learning and growing, avoiding being stagnant...At least, that's what I think it's all about. 

Desperately Seeking Fortune Cookies!

It's hard for me to ever stand up for myself, especially now that I am dependent upon someone else to provide a roof over my head.

It's not really big things at all, it's little stuff. And even at that, I have a hard time standing up for me. For example, lights. I need every single light on in the room just to be able to see the way you see in a dimly lit room. No kidding. It's part of my retina deterioration. The light sensors in my eyes are mostly all dead, so even in the bright sunlight, it looks cloudy and overcast to me all of the time. Dark.

When I paint or draw, I sit under four high power floor lamps, all pointed at the canvas. I've done it like that for years, but we didn't realize how bad that meant my eyes really were. I just thought I liked the light.

I like to be green and energy conscious, I do! I started that whole Green La Vergne group a few years back, I recycle, I use my canvas bags at the grocery store, I use curly light bulbs...So when I have the lights on, it's not that I'm being negligent of the energy usage, it's because I really, truly do need them.

For some reason I just can't find it in myself to say, "Yes, I do need all those lights on." When someone comes in the room and says, "Geez! You don't need all these lights!", and flips a few switches.

Instead, I shrink. Partially out of embarrassment for my own ineptness, partially out of fear of rocking the boat if I tell my truth, and partially because I don't feel like I deserve to have those lights lit up just for me.

I mean, what IS that? I never had a problem standing up for myself before. Somehow, somewhere in the process of becoming visually impaired, unemployed, and an occupant of my in-law's basement, I have lost my gusto for taking care of me.

Now, how do I go about getting that back?

The Fog

My eyes are terribly blurry today. It's like looking through a moderate fog. This fog has been getting thicker and thicker over the last several weeks, and seems to be at its worst first thing in the morning, and then later in the afternoon when my eyes are tired from reading throughout the day. Give them a rest, and some of the fog dissipates. Read or play video games and it comes back. I guess they say that's normal for my eye condition. I wish I didn't know about it. At least when I didn't know, I just thought my eyes are strained, rest them and all is well again.
All will not be well again, as far as my eyes are concerned, and it pisses me off.

I'll be under that boulder, if you need me...

I'm overwhelmed and frustrated. I'm a bit beyond depressed and definitely feeling anxiety over every little thing.
I've talked over the years about my epilepsy and how it affects me financially  as well as physically. Then when we add to the mix my vision issues with the RP (retinitis pigmentosa) and then The Wifester losing her job a couple of months ago (after which I never was told I was fired, but I never again received another dictation to transcribe for that doctor) and wow. I mean, just wow.

Really, life? Really?

Ever since  I lost my full time job back in 2009, and because of doctor ordered work restrictions and my inability in the past two years to find an employer who will work with them, (other than the wifester's ex boss who let me do her medical transcriptions at $70 bucks a week, until she fired The Wifester, that is) I have been left to do what I can to generate my own income. Since then I have done many things to try to maintain some sort of income, but none have panned out to be very profitable. At all.

I even attended school (online) and got a degree in web development, though it took me a while to finish because my eyes always went fuzzy while working on assignments. Still, my degree is only an associate's, and everyone wants a minimum of bachelor's. Plus, in the uber competitive world of web development and design, I can't find anyone who is willing to work with me with my restrictions.

For example, my restrictions include:

• I can't be on ladders, scaffolding, or other heights.
• No driving
• No operating any heavy equipment 
• No working near objects that would be a hazard to me during a seizure.
• No exposure to extreme heat (medication reactions can occur plus heat can trigger seizures) 
• No work in an environment where peripheral vision is essential for safety (ie: factories with moving equipment that I won't see coming at me) 
• I am doctor ordered to not read, write, or look at the computer screen for longer than 30 minute intervals with 20 minute breaks in between.  
• No work that requires me to read small print.
• No work that requires me to distinguish between colors. (that's part of my vision loss, inability to differentiate between certain colors)

But apparently that big $5000 I earned last year (that's my entire income from last YEAR, folks, consider that a moment.)  negates my eligibility for Medicaid, and I'm not old enough for Medicare, and I can't get insured on the private market because either they don't want to touch me or they want me to pay over a grand a month for coverage that is minimal, at best.

At some point, after I lost my job in 2009, because of my severe work restrictions due at that time only to my epilepsy (because we didn't even know about the RP) I was advised to apply for social security disability.

My application went in in April 2009, and within 90 days I was denied. I was advised to appeal, which I did, and finally last month I was given a hearing date to go before the appeals judge and plead my case.  By this time, two years later, I had since discovered my eye problems and added that to my request for social security disability. My lawyer felt that my diagnosis with the RP and my severely restricted peripheral vision was enough on its own to qualify me. Epilepsy is harder to get approved because they always say you can find some kind of something to do for work when you are not in the grips of a seizure and they expect employers will make allowances for you to miss time from work due to your seizures. That's not always the case. I've been fired several times for missing work due to my seizures. They also say that seizures can be controlled and that if they aren't you must not be taking your medication properly. Never-mind that some people, like me, have what are called "intractable seizures", which do not respond well to medications. But adding to the mix my eye problems and those new work restrictions, come on! I wouldn't hire me.

At my hearing it was me, the judge, the court reporter, and an occupational therapist. After my testimony the judge asked the occupational therapist if she knew of any jobs that I could perform, and she said "no". She said that there is not an employer who will work with all of my severe restrictions. At that, the judge said she had heard enough and dismissed me saying I would receive her judgement in 30-45 days.

I got my letter from her the other day. She says that she finds that I could work in a steel factory operating a cutting machine, or I could work in a warehouse picking orders, or that I can work in a clothing factory sorting and hanging garments. I don't know about you, but I'm pretty sure that cutting machine at the steel factory is going to be a bit too dangerous for a "legally blind" epileptic, and I've been in warehouses, and I've seen the equipment order pickers have to operate, and the heights they have to climb. And, honestly, if I can't tell the difference between that yellow garment and that white garment, or between the purple one and the brown one, how am I going to sort them?? The judge said that she was not considering my vision restrictions because though my doctor ordered them, he had also recommended I go to the state's blind and visually impaired office and receive orientation and mobility training and utilize services from them. He referred me alright, but they say that since they have not received funding from the state yet for this year, they can not take in any new patients at this time. I'm on a waiting list, and have been since December.  That wasn't good enough for her. She ruled that I was being "non-compliant with the doctor's orders".

*Sigh*

I can appeal, which I have, but they say it will take at least another 6 months to get a review of this judge's decision.

Meanwhile, we may lose our house. I can't afford to see my neurologist or to buy my seizure medications (which cost over $300/month).  I don't WANT to be on disability. I don't WANT to be labeled disabled...I just want some help with getting doctors appointments paid for and needed prescriptions filled. I am willing to work for anyone who will hire me, but I just need some extra time to complete the job. In today's job market, the need for extra breaks and extra time to complete simple data entry tasks is an unforgivable offense.

At this point, the Wifester and I are going to Ohio in a couple of weeks so she can try to find some work through one of her friends or family members up there. We have support there. We have places we can stay while we look for a new home and let the real estate agent do his thing to sell this one. We have to sell this house before we get foreclosed on, and we have to sell it before we can even get approved for a rental somewhere else!  I should feel relieved about having family in Ohio who are supportive of us and willing to help us get back to where we were before...but I just feel like a 37 year old loser. I don't know what else I am supposed to do.

Forgive my bitching and moaning, but right now, I think I'd like to crawl under a big rock and never come out.

his old, blind, Aunt Tee

So, I went to the eye doctor a few weeks ago because, well, I need some new glasses. I haven't been in a few years, since I haven't had insurance and I've really noticed my vision getting very, very bad. Especially my night vision, which has always been really bad to begin with. So I'm in there with my pupils dilated, lights being shone in my eyes, and before I know it, three doctors have come in the room, each of them scratching their heads, each with that "ut oh" look, and each concurring that I most definitely needed to go see the retina guys, at the retina place. They would know more about what was going on. It's not the first time the eye doctor has been concerned about my retinas. They've been telling me for years that there was some "degeneration", but never has there been so much concern nor sense of urgency. They mentioned a suspicion of Retinitis Pigmentosa. Retin-what, you say?? Immediately my mind flashes to my dad's story about visiting his great aunts, the sisters, a deaf one and a blind one. His old, blind, Aunt Tee...Holy shit!
So I go to the retina center, and I saw what must be the kindest, most professional physician I have ever encountered. This was the man who would tell me that I do in fact have the dreaded Retinitis Pigmentosa, and that at best, I have 10 years before I'm left with only the ability to recognize light sources and general shapes with my best eye. My left eye will give out and be "legally blind" within 5 years. You know what my first thought was as I sat there in that white, crisp room? I thought, "how'am I gonna paint?" First thought. No shit. I mean, a million others flooded me, and I worried about how The Wifester would handle the news, or how the hell am I going to use my degree and DESIGN, when I can't friggin see?? I keep adjusting the color on my monitors. I even bought new monitors. Still cant get a good, clear image. I finally realized that it's not the hardware. It's me, my hardware. The doctor asked me if I was understanding what he was telling me, and I said to him, "Yeah, so I need to paint all that I can, like now." He gently patted my shoulder and he said to me, "Yes! Make all the art you can every day. Travel. Go everywhere you ever wanted to go just as soon as you possibly can. Don't put it off. Do it now, and enjoy your vision while you have it."
That was not a conversation that I ever thought I would have. I'm still trying to absorb it.
So today, I had to go in for my Visual Field Test. This shows us how much of my peripheral vision is affected. The way I understood it, you are considered "legally blind" when your visual field in your better eye is less than 20%. My best eye has a visual field of 10%. I didn't know I was so blind. I can still see! I can! OK, so you can sneak up on me pretty damned easily. Granted. And sometimes if you toss something my way, it's likely to hit me in the face, sure. I can't deny that...but I really can see...some stuff. Which has me seriously contemplating my art. I mean, I know what it looks like to me, but now I'm questioning how you see it. Holy crapola! I've been so proud of some of these pieces, and have been showing them off and uploading pics of them to facebook...and you know what, I realize now that they probably aren't nearly as good as I thought they were! Maybe I'm NOT a good painter. Maybe my About Me shouldn't boast "artist, blogger, poet, saint". But you know what? Screw that. I love to paint. I love to be creative. Even if every single thing I've ever painted is shit, I have enjoyed doing it, and I'm not going to stop. So if my art gets funky, and crazy abstract, and you are wondering what happened to the Marilyns and Joan Crawfords and mermaids and cityscapes that I've been doing, you'll know now that it's just that I'm going to have to adapt to my ever narrowing visual field. Man! Today sure has been a downer.