No More Empty Fortune Cookies!

Tuesday, December 13, 2011

Adaptation and Peace

Retinitis pigmentosa.
It's been over a year since the diagnosis. In some ways it seems like it was only a month ago they delivered the news. So much has happened in the last year, so many changes...some for the better, some worse.
I've moved from Nashville, TN to Cleveland, OH. I've lost one house and gained another. I met some new folks and left some others in my past. I've finally gotten approved for social security/disability, and I've come to terms with needing to use a cane instead of relying on my eyes to see where I'm stepping.
I've adapted my art to my failing sight. That makes me both happy and sad. Mostly, though, I've found it to be a challenge that I'm quite up for...most days.
I've learned to appreciate audio books, and I've learned to ask for more light.
There's times I want to curl up in a ball and forget that I'm going blind. And there's times that I want to go rally the masses to fund research for a cure. If I was a religious person, I'm not sure if I'd be mad at God, or Allah, or Buddha or whoever, or just feel a little bit screwed. I'm not though, so I just kind of look at it like, well, a matter of biology and chance. After all, that is what it comes down to.
I think if I had found this out back in my manic fuled days of partying and getting high, I'd probably be dead right now. Not intentionally, but it would have made a great excuse to overdo it on all those party favors I used to keep in stock. I'm glad I'm not there anymore. I'm glad I have The Wifester and some really good friends.
I'm learning to adapt to the constant changes in my vision, in my life, in my attitude.
I think that's been how I find my peace.

Tuesday, October 25, 2011

Poetry Day

I loved you once,
long ago,
in a place I don't speak of today.

You took my hand,
and guided me into the
depths of your despair.

Hand in hand,
I followed you,
Until I was lost
even to myself.

I don't follow your path these days,
an I happily proclaim,
"I won!"

Wednesday, October 12, 2011

Spring Chickens

As I read an article about the foreclosure crisis the other day, it struck me.

I'm not the spring chicken I thought I was.

The epiphany came somewhere around the paragraph that started with:
"Middle aged couples, those age 35-65..."
And suddenly I went,
"Holy SHIT! I'm friggin' MIDDLE AGED!"
I thought surely that can't be right, and tried to push it out of my mind.

Later, when I went out with the Wifester to run some errands, I stopped in to buy some wine. The guy in front of me got carded, and I thought,
"huh, he looks about my age."
So I began to fish out my own ID and had it in hand, prepared for the cashier's request...

Which never came.

I guess that settles it. I'm officially OLD.

Tuesday, October 4, 2011

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?

Friday, September 9, 2011

Hello Miss Bettie

I'm working on a pin up girl series of greeting cards to try to sell in my Etsy shop. It's been a while since I had anything posted for sale in there. I got Miss Betty Page completed, now for a couple more vintage hotties to make a set...who should be next? 

Wednesday, August 17, 2011

What a ride

What a ride life can be, eh? I mean, one minute you're coasting along, all's right with the world, and in an instant everything can change.
One of my best friends ever since around the 8th grade is sitting by her daughter's side at in the ICU, while her daughter's father is down the hall in another room, and his fiance' is laying in the morgue.
Why? Why do these things happen?
I talked to the daddy yesterday, who I have also maintained a friendship with for nearly 20 years, and he has the survivor's guilt thing happening pretty badly. He is grieving the loss of the love of his life, wondering how he will ever get along without her, worried about the astronomical hospital bills that are sure to come for his daughter and him, and most of all concerned about his daughter's future. Next to the family dog and his fiance', neither of which survived, the daughter is who suffered the most injuries. Head on collisions are not known for their delicate nature, and this one certainly was nothing if not violent.
There they are, riding in the slow lane of a 6 lane highway, when some kid coming around a curve veers straight at them. No time to react. No time to say goodbyes.
I don't know how I would handle the situation, were I in his place, in my friend, the daughter's mother's place. I honestly don't.
It is a comfort to them now, that mom and dad have been able to maintain a true friendship since their divorce. One needs all the friends they can find at times like these.
I keep thinking about the daughter...16 years old, laying in the ICU, broken pelvis and now missing her spleen, a good portion of her small intestines, and several inches of her large intestines. And finding out her dog and her step-mom are no longer here.
I keep thinking about all the photos my friend sends me of this daughter playing basketball, volleyball, cheerleading...How deeply will the rest of her life be impacted by this split second incident.
What a ride life can be.

Saturday, August 6, 2011

Forward Momentum

Seems like every time I promise to keep up with this blog more regularly, the further behind I get on actually blogging.
It's been difficult to make myself sit in front of the screen long enough to construct a full and concise thought, much less to actually take the time to blog about it.
I guess it's the stress, but it seems like my eyes get so tired so fast. I hate that. I've actually resorted to "reading" via audio books. I feel like that's cheating, but my eyes just go blurry and my vision gets all double and jumpy when I try to read. Even large print.
I suppose I should just be grateful for the free audio book player that the center for the blind sent to me, and all the free audio books from the library of congress. And I am. Really, I am. But honestly, I think they could have kept this stupid white cane a little bit longer. At least it is getting some use, though. It's great for pulling things down from the top shelf.
All's not doom and gloom, though. I have found inspiration in my vision loss and created some visual impairment awareness tshirts, of which I am donating $1 of each sale to The Foundation Fighting Blindness. If you aren't aware of them and the work they do, I implore you to swing by their site and check them out. And if you have a few dollars to throw at them, please do. Among many other things they do to help the visually impaired and blind folks of this planet, they work to fund research to help find a cure for currently incurable diseases like mine.
I've also picked up some more leads on some web design work, small jobs, maintenance mostly, but it's something.
On another good note, The Wifester and I joined a social group here in Cleveland that is comprised of committed gay/lesbian couples who get together monthly for outings, dinners, crafts, etc. We met up today at one of Lake Erie's beaches, just west of Cleveland. It was a wonderful day, sun shine, cool breeze blowing off the lake, and LOTS of really nice people to mingle with. We took the dogs with us because we knew they would be great conversation starters, and they were. I laughed because we fit the stereotype...lesbians with big dogs, and the gay men with their little, tiny dogs. Why is that?
I met another lesbian who is losing her sight, though her's is due to macular degeneration while mine is a retinal degeneration. Her central vision is gone, so she only sees some of the periphery, where as I have decent central vision, and no peripheral. We joked that maybe if we combined our eyes we may get a decent pair out of the deal. I think it is important to find humor in this. Keep pushing forward, one foot in front of the other...even if I have to look down to see where to plant each step. What else can I do?

Wednesday, June 1, 2011

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.

Wednesday, May 25, 2011

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".


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.

Sunday, May 15, 2011

Self Portrait

I think that depression and angst over my steadily failing eye sight is taking its toll on my art. No more mermaids and fairies these days. This is a self portrait, still in progress.

Friday, April 29, 2011


"In the end, we will remember NOT the words of our enemies, but the silence of our friends." - Dr. Martin Luther King Jr.

Monday, April 25, 2011

Life on Life's Terms

Human emotions are fickle little things. They go from hurt to angry to hurt to happy with little provocation and can take us on a roller coaster of feelings with little or no warning.
I never mind too much when unexpected joy creeps's that bastard of a mood killer, anger, that really grates my goat.

Anger is the fuel driving jealousy, pain, and overall dissatisfaction. In short, anger drives the Life Sucks Express.

I try to deal with that pesky little bastard through writing. Here in my blog, in my journal, in poetry...wherever. It's healthier than acting on it physically. When I'm really, really angry, I take it out on Wii Fit's rhythm boxing, but that doesn't always cure it, just curbs it down to a somewhat manageable level.

When I wrote about the Wifester's frenemies,  I was AAAAANGRY. Still am a little bit- to be honest, but the Wifester feels better about it, so I am working on letting it go.

It does make a difference that one of her coworkers, the one she felt closest to - the one she calls her best friend, finally called her over the weekend. They had productive conversation, and I feel somewhat better about that whole situation for my Wifester.

I do still feel hurt for her that it took over a month for that to happen - but that's my problem. I have to let go of my expectations of other people. Rarely does anyone ever live up to them, and I know that's because I place high, and yes, sometimes unrealistic expectations upon those around me.

I'm still working on this whole life on life's terms stuff, and it can be a bitch. But like they say, that's the stuff that makes us grow. 

Thursday, March 17, 2011

A Real Life Story About Someone

Someone works under deplorable conditions. Their workplace is a physician's clinic. Someone is a nurse in that clinic. Someone is not allowed to take a lunch break, instead having to sneak in bites of a sandwich here and there, in between phone calls, vital signs, shots, and exams- making sure not to let patients see them eat, as that would be unprofessional.

Someone is required to work 10 - 12 hours a day without any scheduled breaks or a lunch. No breaks period. Someone is not even able to step into the restroom to relieve themselves without  Dr. Boss knocking on the door and saying, "I need you in exam room...", but really, that's small scale comparatively...

Dr. Boss frequently has anger management issues, and has from time to time thrown objects from Dr. Boss's desk at Someone and Someone's co-workers. Once, a cell phone-turn-projectile launched across the room from Dr. Boss struck Someone, leaving a mark. Another time it hit the window, cracking the window and shattering the phone.  Once, Dr. Boss was yelling at the staff and simultaneously banging on Dr. Boss's desk with hands in fists, and broke Dr. Boss's own wrist in the process! Can you imagine being so out of control mad that you break your own wrist pounding on your desk? Dr. Boss calls each of the staff demeaning names, like "twit" and "useless" and "not deserving of the salary I pay" in front of patients and other staff....the list of workplace offenses truly goes on and on. I've only scratched the surface here.

I have asked Someone, and Someone's coworkers why they don't quit this job, go somewhere else. Each of them have multiple years of experience doing what they do, and each are very efficient and well qualified to do their respective jobs. I would think none of them would have trouble finding work.

It's all about the money, they say. They explain, under no uncertain terms, that Dr. Boss pays them each a salary that is literally at minimum, two to two and a half times higher than any other physician's offices pay.  Dr. Boss is quick to remind the staff of this on a routine basis.

Now, mind you, all of the atrocities that have occurred in this work environment have not gone unreported. There is an "office manager", who has been informed of the name calling, the lack of lunch breaks being provided, the requests to perform medical procedures on patients when Dr. Boss is not physically present in the office... Either Office Manager simply has not addressed these complaints with Dr. Boss, or Office Manager has addressed Dr. Boss with the complaints, but it has fallen upon deaf ears. Regardless, there has been nothing done to alleviate the problems.

In recent weeks, Dr. Boss has become increasingly persistent  with comments that the employees should "just quit" their jobs. Everyone wants to quit, but no one wants to quit. It's a very precarious situation because this is a very bad economy we're still in, and no one can afford to be without work while they look for something with comparable pay. To take much less than their current salaries would mean certain foreclosures, repossessions, and evictions.

This hostile workplace has put so much stress on the entire staff at Dr. Boss' office, that every single employee is now under psychiatric care and on medications for depression, anxiety, and stress. Not just one or two employees. Every one of them. That should speak for itself.
When you talk to this group, they all, each and every one of them present to you as timid, fearful, anxious people. I used to meet with a group of adult survivors of childhood sexual abuse. These employees remind me of that group. They all look and act like people suffering with Post Traumatic Stress Disorder. No kidding.

I told this group of employees that I thought many of these offenses were more than simply poor treatment of employees, from a moral perspective, but also some pretty clear cut infringements on federal labor laws, malpractice infringements, and also several instances of definite sexual harassment. (Your employer is not supposed to share the intimate details of their sex life with you. That's crossing the line!)
Armed with that, they approached the Office Manager once again, requesting relief from these offenses, and to date, there has still been no action taken to correct the maladies present at the workplace. After the most recent string of violent outbursts, each of these employees are too afraid, individually, to embark on the process of seeking legal counsel for fear of retaliation. It almost seems like a hopeless situation.

I don't know why I feel compelled to tell you about the plight of the staff at Dr. Boss's office, but I do.  Maybe I just want you to be able to think of them anytime you think how badly your job sucks. At the very least, your spirits should be lifted just a little knowing that at least you don't work with Someone at Dr. Boss's office.

**UPDATE  3/18/2011  Someone got fired by Dr. Boss today, and honestly, I've never seen anyone happier to lose a job!**

Thursday, February 24, 2011

I hold history in my hands

A few months back, my parents gave me the diary of my great aunt. She's the one who reunited me with my parents. She kept this diary updated daily for five years! Well, minus a few months in that fifth year. Her diary spans the almost 5 years between January 1, 1936 and September 1, 1940. She was just a sophomore in high school when she started this diary. She recorded not only her own personal history, but she captures the history of our country in the midst of the Great Depression. I feel honored to have it, and I have cherished the privilege granted me to read it. My great aunt was my grandmother's sister. Her husband was my grandfather's brother. It's quite a cute story, how these two sisters met two brothers and how everyone fell in love and eventually married. This diary highlights that story, up to just about a month after my grandma and grandpa had my uncle, their first child, which itself is another very interesting story. I've learned things about my grandmother, grandfather, and great aunt and uncle that I would have never known had it not been for this diary. I've developed an even deeper appreciation and respect for each of these people who helped shape and form my life. I have found a better understanding of them, and a realization that they truly understood me much more than I ever knew.
Everyone has a story to tell. I encourage you to dig out your family heirlooms and look for that diary of your deceased relative. You may just be shocked at what you find. I was.

one of my favorite entries, which I think just captures my aunt's persona perfectly:

December 31, 1939 - Well diary, another year and you and I are still friends. So much has happened this year. One thing, I fell in love, I'm sure! Come on 1940, I'm ready!

Wednesday, February 16, 2011

To be a mushroom

I almost wished I didn't know about the Retinitis Pigmentosa. It seems like it would be easier if I just thought my eyes were getting bad, and not have to know, with each flash of light I see or with each floater, each eye twitchy thing, that my retinas are dying a slow, but certain death.
I find myself rubbing my eyes when I'm reading, because they tire so easily. And as I rub my eyes, I find myself wondering if they will get tired faster and faster the more this progresses. Of course, on the flip side of that is the fact that I would probably not be making travel plans if I didn't know about it, so there's that.

I've been sick with a nasty chest funk and sinus funk for two weeks now, and honestly, I haven't felt up to writing at all since I've been sick. I'm finally starting to feel better now, so hopefully I'll be able to concentrate and get some writing done soon.
Meanwhile, I'll be over here, sipping on home made chicken noodle soup and jamming to some Pandora mixes while I try to eradicate my house of the sickly germs that seem to have set up camp. See you soon!

Saturday, February 5, 2011

Workouts and Camel Toes

Getting back to my blogging is like losing weight. Slow, and difficult to navigate.
Wii fit mocks me. It tells me how many days it's been since my last workout, and asks if I've been too busy to workout. It is right here with me. It sees me sitting on my ass in front of the tv. It knows I have not been too busy, rather too lazy. I'm relatively sure it has heard me coughing and hacking this past week and a half, and hasn't bothered to offer up a single "Gesundheit". I mean, that's just rude. And it seizes every opportunity afforded it to get a dig in at my expense.
Like when it asks me to step on the balance board, then says, in an almost pained voice, "Oh!"
Little Wii-bastard! I'm grateful blogger doesn't say, "Fortune Cookies, I see you've been too busy sitting on your ass watching Oprah and playing around on Facebook to blog this week." I'd be in need of a new laptop in very short order if that were the case.

So where to start?
Observations that you probably care absolutely nothing about, but gimme a break, here. I'm trying to warm my blogging-ability back up again.

  1. When my sofa is naked, the dogs do not hesitate to jump up there and sprawl out, scratch the seats, and leave their hair and drool slathered all over it.
  2. When I carefully cover the sofa with a blanket to protect it from puppy claws and drool and hair, they stand at attention in front of it and wait for permission to jump up there.
  3. Vodka makes football almost tolerable!
OH! How could I forget to tell you about this?!
Ok. So my Sally dog...she's special. We've established that, right? I mean, the multiple rounds of obedience school, the eating of 9 leashes and 6 collars in 1 year...The need for special food because of her ear allergies.
Yeah. Special.
So The Wifester and I have joked about, forgive me for being crude here but for lack of a better term, her "camel toe".
Her little female anatomy has just looked odd from the beginning, and honestly, she looks like she has a "camel toe" issue going on. Anyways, recently, she has been scooting her little but across the floor from time to time, and having worked in the veterinary field, I know that to be a sign that their anal gland needs to be expressed.
No biggie.
So Saturday we take her and the Sunny-dog to the vet to get their yearly shots, and to have Sally's anal gland checked out. Turns out her gland was fine, it's not her butt that's bothering her. It's that damned camel toe!
The vet says she has abnormally shaped anatomy. Essentially, she has an inverted vagina, which makes tinkle drippings get trapped in the skin fold around her labia, causing irritation.
Now, here's the kicker. Do you know how I'm supposed to remedy this? Per the vet, I have to use baby wipes and clean her friggin' camel toe after she pees!
No shit!
So now, not only do I have that spastic dog that the whole neighborhood knows to be "The Wild One", now I have to be that woman who wipes her dog's crotch after she goes potty. 

Thursday, February 3, 2011

Screw You Retinitis Pigmentosa!

because I can still do this

My friend, SuzBop, asked me to do a painting of her two daughters, but to make one a mermaid and the other a fairy.
I think it's just about done. I hope she likes it!

Renewed Dedication

So I've been very lackadaisical about blogging for the past year. Save for the sporadic posts here and there, and a chime in with a kiss and a promise to keep up better. Sorry about that.
The good news is that I finished school! That was the biggest hindrance to my writing time and creative flow. I'm so relieved to have finally accomplished that task, I can't even tell you!
I don't even care too much that I'm going to lose my sight and never fully be able to utilize the skills I learned. I mean, I care, but learning them was worth the time and effort. And I can still do what I can do until that day comes. Besides, it really has more to do with a self-satisfying sense of accomplishment. Does that sound awful? After all of my enthusiastic starts, only to be eclipsed by my seemingly inevitable lack of follow through, I'm just super stoked to actually have completed the course work and earned a for real and for true, accredited degree.

Anywhoodle, what I'm saying here is that I miss you! I miss my blog! And I miss blogging on my blog. I'm making some changes now, and coming back to my blogging self is one that I am committed to. I have to admit, blogging is a sort of therapy for me. It's cathartic. It's stress relieving. It's mood altering.

Another change I have committed to has been exercise. I know, I know...but this time I have stuck to it since Thanksgiving! That's a record for me. I'll keep you posted on the progress. I already notice clothes fitting much better. I got into a denim skirt that I haven't been able to wear in over a year! I figure if I'm gonna go blind, and deal with epilepsy, the least I can do for those around me and for the eventual guide dog is to get below the obese level, preferably below the moderately overweight level, and hopefully into a weight zone that is much easier to be dealt with by those around me when I'm incapacitated. Wish me luck!

Thursday, January 27, 2011


I'm looking forward to waking up and realizing that I've just had one,very long, very troubling dream.
I know that's not going to happen, but I find myself looking forward to it.
I don't much like the idea of losing my sight, yet every day I have more and more realization that it truly is fading, and that there's absolutely nothing that can be done about it. Damn these defective genes!
I've lived my entire life tying to overcome this innate, incessantly nagging voice telling me that I am, in a word, defective.
It took years of therapy, (sometimes twice a week!)to get to the point in my life that I no longer looked at myself as defective. And here we are, full circle. In an instant, a diagnosis of a genetic disease caused by wayward genes and embedded in my DNA at the moment I was conceived brings all of those feelings of inadequacy rushing back to me.
I suppose it's good that I spent all of those years in therapy. I have a pretty good arsenal at my disposal to combat that internal nagger now. I know I'm not totally defective. I know I am smart, somewhat talented, and ambitious. Those aren't the traits of a defective person. So what if I have some defective genes? No one's perfect. No one can be. I'm learning that, and how to accept me for who I am, for what I am. And for who and what I'm not. Will my vision loss affect my life? Absolutely. Will it stop me from doing the things I want to do? Absolutely not!
I feel like a big baby when I start to get down about it, and I tell myself to "Buck up, Buckaroo!" But then, at the same time, there's this part of me that just wants to wrap my arms around me and say, "I'm SO sorry! This sucks, and you deserve better!"
I don't articulate my feelings very well in person, in conversation, but I can write them out, and when I do they come out fluid,and languid. Like the steady, slow stream that ran through my back yard when I was a kid. Constantly moving, shifting,ebbing, and carrying with it the leaves, fallen dead from trees further upstream, to some unknown burial ground beyond the boundaries of my exploration. Making way, making room for new life, new growth to replace them.
I mourn the leaves that have fallen, the ones to fall soon...but with hopeful anticipation that is equal to, if not greater than the sadness, I look for those tiny new buds to appear with their promise of growth and beauty.

Thursday, January 20, 2011

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.