Chapter 1: Well Fucky-Poo

Those were the first words which popped into my mind when they told me.

The second phrase which popped into my head was Well, in all airness they DID tell me that I would go blind if I kept doing that!

Yeah. I know. It was a bad joke. A very bad joke. But, I felt that it was my right to make that joke, damn it! And, I never was one to take myself too seriously.

Even when I was first self-aware as a little girl, I had always had a feeling that my eyesight was not the best.

OK. I also have a tendency to understate things.

Anyway, even when I was little, I had a feeling my eyesight was bad. No, I did not usually outright bump into walls and stuff – but I had issues seeing things everyone else could see with relative ease: A hawk sitting on a pole by the side of the road, a dent in the family car, a person running on the side of the road.

Meanwhile, book pages seemed to be harder to read for me than it seemed like it should be. Letters would blend together, words were hard for me to decipher, and don’t get me started on trying to tell the difference between a “9” and an “8”.

Before I was 10, I did get a couple of new eye glasses. The optometrist told me I had lazy eye. But, we were a lower middle class family, and getting creature comforts like new glasses every year was not something we could afford.

I did get a new pair of glasses after my first visit. The next few years were spent doing eye exercises, meant to strengthen that lazy eye.

Again, we were not in the greatest of shape, financially, so I lied. I told them my eyes were getting better. I told them the glasses worked, and that the exercises were helping me see a lot better.

I was a kid. I didn’t know any better. I had no idea I was hiding a true issue that needed attention. To be honest, I seriously doubt that first eye doctor had any clue what retinitis pigmentosa was. He was an older guy, probably years past retirement age. He was just trying to get by, too.

Sometimes, the pages on the books seemed a little more blurry than they should have been. I got a couple of pairs of glasses when I was a little girl, but these were not the best eyedoctors in the world that my parents were taking me to. We were a lower middle class family, and comforts like glasses were not cheap.

When I got a little bit older and moved out on my own, I tried to do without glasses for a while, found out that was not happening, so I started wearing readers. Problem was, I felt like I had to go to a higher magnification each month.

So, I went to an eye doctor to get real glasses. Quite a few people at work recommended her, she took our insurance, and they said she was nice and thorough.

I knew something was up when I took the peripheral test and did not see a thing.

“You can press the button any time you see a flash,” the assistant insisted.

“Yeah ... I’m not seeing a thing.”

There was a pause. “You will have that sometimes!” she said as chipperly as possible, yet somehow managed to convey that there was something amiss.

The doctor came in and gave me a few more tests. Yes, there was the standard eye test with the letters – and I did not do that great on that one, either. Then she did some tests I had not had before – she darkened the room, had me put my chin in a strap, shone a light in my eyes and looked at them through a magnifier. She had me look through another device, chin on strap, and had me concentrate on a small cross hairs in the center. The left eye took a lot longer than my right eye. This was used to take a picture of my retina, I found.

While I was going through a couple of minor tests with the assistant, the doctor was looking at the pictures and the results.

When she came back, she had a very concerned look on her face. “I am afraid you have retinitis pigmentosa,” she told me.

I had never heard those words before in my life.

She described it as a genetic, generative form of tunnel vision and night blindness caused by the eye’s rods and cones slowly being eaten away. There was no known cure.

“I hope you do not drive, because you will not pass the next driver’s test,” she told me.

“Well, that is good news ... I don’t drive!” I told her.

During my teens years, I had attempted to learn to drive. My parents had an orchard where they let me practice. I did all right out there, but not spectacular. Hit a tree once. But, once I got out on the road, I was a disaster. I felt even more anxious. I never even attempted to get a driver’s license.

“We usually just do not see it so advanced for someone this young,” she said. She let out a sigh. “I wish there was more we could do, but we can set you up with a new pair of glasses in the meantime, which will help you with the field of vision that you still have.”

The glasses came in a couple of weeks later. I picked them up on a Saturday. Dr. Vickie was there and fitted me with the new glasses.

Let me back up a little bit here again. You know ... back story.

I was a pretty awkward kid. Sure, I had friends, but I sure wasn’t the popular girl in school. The eyesight did not help. The crooked teeth did not help, nor did the braces to fit those crooked teeth. Wearing glasses and having braces did not help.

When it came to boys, I was super awkward. Never went on dates, never showed any interest in going on dates with any of them. But, the thing is, girls are just as mean if not meaner. Especially in school. I heard a lot of names and insults thrown my way, so I just sort of collected them inside and let them stew and well.

I adopted sort of a goth/emo look. To me, it was more of a “I really don’t give a fuck” look. My parents practically paid me to go to prom, so I reluctantly went, alone, naturally. I spent the whole thing at my own table, stacking empty drink cups in a pyramid.

I though getting out of high school would be a revolution, but it simply turned into a daily grind. I got a job at some big box retailer, putting out freight. Still, I did not go out on dates. By then, I had become so socially awkward, thinking of attempting at a date gave me the shakes.

I moved out on my own, got my own place. Nothing fancy, just some little place in a very old house. Good enough for me.

And while I might not have gone out on dates, I did watch a lot of porn.

Like, a lot of it.

No one reading this will find it surprising that you can find porn almost anywhere. If you have a computer, you can find porn. If you have a cell phone, you can find porn.

I found porn. A lot of it.

I mean, I had hard times seeing, but I could still see enough.

Almost every evening, like clock work, I would get myself off. It started getting to the point that, at 8 p.m. every night, I would start getting wet automatically. So, there I would be, in bed playing with myself while watching some cutie giving a guy head, or some cutie playing with herself, or some cutie eating some other cutie.

The topic of sex with my parents was a forbidden subject. They never talked it, they never showed any interest in talking about it to me. In fact, there had been a couple of times when I was caught playing with myself, and it was treated as though I had robbed the local bank. Sex became an embarrassment. A taboo.

The thought of sex with another women ... fire and brimstone. They were not religious people by any sense of the imagination – but there were some absolutely forbidden areas. Sex, of course, was one of them. Homosexuality was even further past that locked iron door.

Yet here I was at my eye appointment with Doctor Vickie sitting in front of me telling me about something that would change my life, and one of the things which went through my mind the most was about how very cute she was.

She could not have been much older than me, but she was very different from me. While I was dark and emo, she was bright and chipper. She had long, curly blond hair that was usually kept tight in a bun. For some reason, on that Saturday, she had decided to let it down.

Her face was perfectly symmetrical. I know, that sound mathematical ... but it was true. The dimensions of everything on her face were perfect, from her sometimes squinting, bright blue eyes; to her cute little button nose, to some very kissable lips, to high cheekbones and to a perfect little chin.

She dressed very professionally, but it was still difficult to hide her body from the prying eyes of any lustful emo girl. I know at one point, one of her assistant caught me watching her ass as she walked out of the room, giving me a quick little knowing smile. Oops!

She was also very professional, but also very passionate and very knowing and very caring.

Knowing I had retinitis pigmentosa was almost like having a weight taken off my shoulders. All of these problems during my life that I thought could have been my imagination, they were not only real, but there was something behind those reasons. It was almost a relief knowing what the cause of all of this was.

I about jumped when I felt her hand on my shoulder.

“I am sorry,” she said with a smile. “I did not mean to scare you like that.”

I managed a smile. “That is OK. My brain is doing a million things right now.”

She nodded. “I can understand. This is a lot to take in.”

I nodded. We chatted a little bit about eye care and glasses care and I went back out into the wild.

A week later, her office called me again, offering an in-depth peripheral test. I agreed and went in early the next week.

The results were predictable.

The peripheral of a lot of people is about 180 degrees. Makes sense. We can’t see around the back of our heads without our little devices, so 180 is the limit. Even with that, more than 60 degrees is still considered mostly normal. Going under that limit is where the troubles start. Anything less than 20 degrees of a field of vision is considered legally blind.

My peripheral vision showed roughly 12 degrees. In some areas of my eye, it was around eight degrees. In case you are not good at math, this was well below the limits of being legally blind.

Even though I expected it, it was a gut punch.

Dr. Vickie was wonderful about it. She printed out some papers that contained some resources for the blind, including a couple I had already used simply because I could not see that well. She also suggested I look into getting disability social security. She also said that driving any equipment at work would be a very bad idea and that maybe I should consider looking at a career change.

During all of this, Dr. Vickie was sweat and understanding and all around adorable. She would sometimes put her hand on my shoulder, sometimes on my knee. I tend to get jumpy when other people touch me. For some reason, this was not true with Dr. Vickie.

Finally, once again, I left her office with the knowledge that I was truly legally blind.

A week later, she gave me another call. This time, she told me she could get me to see a retinal specialist in the area. He was a bit further away, but he had agreed to see me for further testing. The specialist’s office was in another county.

“I don’t think I could do that, though,” I told her. “The county transit doesn’t go out that far.”

“I could take you,” she said without a pause.

I paused. “That is a lot for me to ask you.”

“I don’t mind,” she said. “I have the day off, and I would be helping a very sweat person in need.”

Even though she could not see me, I blushed. “Sure,” I managed to get out.

That night, I found a girl on one of the porn sites who had kind of a resemblance to Dr. Vickie. Needless to say, I had to check her out. Needless to say, my hands were between my legs almost the moment she appeared on screen. And needless to say, I came in buckets before her panties even hit the floor.

Three days later, Dr. Vickie showed up in her car in front of my house to take me to the retinal specialist.

She flashed me a wonderful smile when I got into the car and began driving me to the office.

We sat in awkward silence for quite a few minutes, me looking awkwardly out the window at the passing scenery. I had not tried to stare when looking at her, but she looked incredible. She had on a very short, dark blue, tight professional skirt which rode about a foot and a half up from her knees. Her legs were sculpted. Going against the look of her professional skirt was the cut off yellow t-shirt she wore that showed off a flat, fit tummy. The cut was just a few inches below her bossom. Her boobs were not big, but they looked very inviting in the shirt. She wore a cap with colorful butterflies, her hair pulled up under it with a stray curl falling out here and there.

My outfit was a total contrast. Black long sleeve shirt. Long long long black frumpy skirt. No cap, I hated wearing caps. My straight, dak, short cropped hair just fell straight down, over my eyes and all of that.

We did both have the same glasses frame, though, wired and rounded. Her sun tint was light blue, mine was black, naturally.

Breaking the awkward silence, Dr. Vickie asked what I liked to do for fun.

I did not answer that I masterbated for fun.

Instead, I told her that I liked to run almost every morning.

“A runner, huh?” she exclaimed happily. “So am I!”

That explained her sculpted legs.

For the rest of the trip, we talked about running.

“Have you thought of running with a guide?” she asked at one point.

I nodded. “I don’t think I need to running with a tethered guide quiet yet, but a guide to spot would probably help quite a bit. I don’t have any big events coming up until the fall, so I haven’t really looked into it.”

“I have guided a couple of runners in a few races,” Dr. Vickie said. “I would love to guide you.”

“I think I would like that, Dr. Vickie.”

She laughed out loud. “Just call me Vickie, Sam.”

I nodded.

The retinal specialist took further test, looking more at my peripheral and checking the pressure of my eye. He found that, indeed, my overall peripheral was 11 degrees, legally blind. He also found that the pressure in my eye was slightly higher than normal, causing blured vision even where I had peripheral. He said this was normal among those with retinitis pigmentosa. He suggested some eye drops and another appointment in a month to see how the drops were working. He also took a cheek swab to see exactly what for of RP I had and from what gene it had originated.

On driving back, Vickie and I talked more about running. We made a date to join up for a run that Saturday.

Saturday came. I could feel nervous butterflies all around me. I mean, this was only going to be a running thing, but here I was treating it like a date and I was getting anxious because I felt like I was treating it like it was something it was not.

It was still warm out, so shorts were my bottom of choice. Nothing too exciting to choose from there – I grabbed a pair of baggy black ones. I put on a black sports bra, considered only wearing that for a moment, then thought better and threw one of my black, baggy sleeveless tops over it. Sure, the running bra was still very visible, but there was some sense of dignity still there. I then put on my favorite pairs of shoes ... black, and a pair of socks and headed out the door.

We were meeting at a park about a half of a mile from my apartment. I was early, about an hour early. And, I was full of nervous energy. What better way to spend that energy than to run it off. I certainly was not going to masterbate in the park. That kind of stuff usually gets you put on some special kind of list.

The park had quite a few loops, including a half mile loop that went through the main parking lot. I decided to run that one for a little bit while waiting for Vickie. I had run a couple of loops and worked up a good sweat when she showed up.

As usual, she looked great. Pink body hugging tights, a pink sports bra, hair pulled back and a running cap, sky blue sunglasses.

“You look great!” she said as she emerged from her car. I smiled. I might be blind, but I can see and she was the one who looked great. She looked at me, tilting her head. “Mind if I give you a hug? Looks like you could use one.” I nodded and we embraced.

Did I forget to mention I was covered in sweat? Because I was covered in sweat. By the time our embrace broke, so was she. Vickie did not seem to mind, did not make any mention of it.

“This has always been one of my favorite places to run,” she said. “So beautiful, hills in the right places, valleys in the right places. Enough tree coverage that the sun does not bake you.” She gave me a grin. “Are you ready to put in some miles?”

And so we did.

I had been in the early stages of training for a half marathon at the time, so I was putting in somewhat long mileage on Saturdays, but not crazy long mileage. Vickie told me she was eying some stuff in the fall, but was not really sure what she was going to run – so she was running for the sake of running.

We ended up doing a nice steady seven miles together that morning, steady enough I was able to keep up with the conversation. We talked a lot about me, my past, that kind of stuff.

“I cannot believe you have never had a boyfriend,” she said at one point. “You are one of the prettiest girls I have ever seen.”

I could feel my face turning a bit flush. “I don’t feel that pretty a lot of time.”

She nodded. “The mental scars from the past are a very tough heal,” she said. “But trust me when I say, you are incredibly beautiful.”

“Thank you,” I mumbled.

We ran in silence for a little while.

“I did not embarrass you too much, did I?” Vickie asked me.

“No, well, sorta. I don’t get a lot of compliments.”

“You should. And you should be out on all of the dates you want to be. I bet you would make any boy out there happy.” She paused. “Or girl,” she added, a bit quieter.

Yeah, there was definitely some face flushing going on there. “Thank you,” I said again.

We ran in silence for a little while. “I am sorry, I embarrassed you again,” she said. She slowed her pace and stopped her watch. I did the same. We were on the other side of the park, still a mile from her car.

“Listen,” she said. “You are an incredibly sweet girl. A very lovely girl. It breaks my heart seeing what you just walked into.”

“I’ve walked into a lot of doors, too,” I said. “Guess I did not see them coming.”

She grinned. “Keep up the sense of humor. Sometimes it is one of the best things to fight with.” She walked to a bench, wiping sweat from her eyes with a towel she was carrying. I sat beside her. “Going blind is not an easy thing at all. Especially if you feel like there are people who do not care for you. But, there are. There are a lot of people out there who care for you. I know ... I know your parents are no longer in the picture. But you have others.” She sat back and sighed. “Look, I want to be that one. I want to be the one to care, to help you, Monica. But I do not want to force you to have me help you.”

“I ... I don’t know how much help I need,” I said. “I’ve been doing this alone for it seems like my whole life. I never had anyone help me. Dad was too sick until he was gone. Mom, I guess we knew she wasn’t okay in the head so she couldn’t be there. Never really had any close friends or anything like that. Just school mates and coworkers.”

Vickie nodded her head. “I know. I know.” She let out a long sigh. “I have only been with the company for a couple of months. You are the first I have ever diagnosed with anything like that. They always told us to never get to attached ... that we just gave the diagnosis, gave you some ideas, then let you get the help you need. But when I saw you in the office that day ... I just remember you saying ‘Well THAT explains a lot!’ when I told you, I could tell you were trying to be light hearted, that you always covered up with your humor. And that has always worked for you.” She turned and looked me in the eyes, silently, for a moment. I turned and looked at her. “But I could also see the hurt. The little hint of tears.”

I turned from her and looked at the ground.

I realized that, even with her sitting right next to me, with her so close, I still could not see her. I could not see a trace of her. There were just blurs, jumbled vision, little fireworks, unfocus, frustration all rolled into one. I knew she was there, but I simply could not see her, no matter how hard I concentrated. For that brief moment, I realized that I could not see her, I could not see the bench we sat on, I could not see the bike path feet in front of us, I could barely see my knees.

I realized that I did need some help.

I said that aloud. She put her hand on my shoulder. “I want to be the one there with you. I want to be the one to help you, as much as I can.” She turned from me again. “I will no longer be able to be your doctor, but that is all right. You have the specialist to turn to now. And there are others in the office who can give you prescription glasses when you need them.” She pulled me close to her. “But that will let me be your friend, your helper. And that makes me very sad.”

She then playfully pushed me away. “But for now ... let’s chase those miles!”

And chase those miles we did.

Being blind is not always about what you cannot see, but what you realize.

That day in the park, I realized I had been missing a lot just out of the range of my vision. I guess that was the first time I realized how serious of a problem this could be, and how serious it could become.

People with RP very rarely go all out, black out blind. That is a different kind of blindness. Usually, with retinitis pigmentosa, our peripheral vision continues to deteriorate. Our tunnel vision becomes so great that eventually, we are just in one giant, fuzzy tunnel that no pair of glasses will help us out of. Yes, we can see many shapes and colors, but they have no definition. And it is way too easy to sneak up on us.

I had continued working for a while after the diagnosis, but found working for the public more and more difficult. Expectations of me were still the same – I was still expected to perform the same way as I could before the fuzziness began to really hit me. That simply was not the case. A couple of times, I bumped into people. Walking up to me and me not knowing they were there was a very common occurrence.

I knew it would be rough, but I had my hours cut at work to about 15 hours per week. This enabled me to start getting social security. That certainly did not make up for that wage loss, but it helped pay the bills. Other things started getting cut, though. I cut a lot of streaming services, I started getting cheaper food at the grocery and never ate out.

Vickie knew about these struggles and offered as much help as she could. Of course, I refused to accept money from her. That simply was not to be a thing.

However, she did find that if I was on social security disability, that the insurance would automatically start paying for mom’s medical costs. That took a financial load off my mind, because the nursing home was draining mom’s bank account like mad.

Vickie also went to my parents’ place, worked on it a little bit, hired some guys to work on it a bit more, then helped put the place up for sale. That also helped a lot – it had been something which had been eating at me for ages, and with her help that worry was pushed from my mind. Hell, she did that in the first week after offering for help, so that was a great thing. “You need to have time to focus more on you, now,” she told me.

One evening, she met up with me at my apartment just as I had arrived at home after a long day at work.

She took one look at me. “You need a long, good hug,” she told me straight up.

I nodded.

She enveloped me in her arms, holding her close.

Fuck, she felt good.

Fuck, she smelled good.

I cried.

I think it had been the first time I had cried since I was a little girl. I am not sure what started the tears, but once they came they got added to and kept coming and coming. I let out loud, shaking sobs.

The entire time, she help me close to her, holding me, softly stroking me.

It felt fucking good.

After I stopped sobbing, she held her face close to mine, gently pressing her skin onto mine, rubbing my tears from my face onto hers. When she pulled back, I could not tell if her face was wet from my tears or tears of her own.

Fucking brilliant.

Each evening after her work, she came to my apartment. Sometimes she would just stay for a few minutes where we would talk about how my day had been going. Sometimes she would stay until the wee hours of night, helping me with a project, passively teaching me things to help me along. A lot of times, I didn’t realize off the bat she was teaching me, but slowly it would dawn on me. I liked her a lot more for that.

“So,” she said one night over a box of pizza. “Boys or girls?”

I gulped down my bite. “What?”

“Which do you like more, boys or girls?”

I laughed. “Never really had any luck with either, so neither I guess.”

“But if you could have luck with any one of them, would you prefer it be a boy or a girl?”

I shrugged. “Depends on what we are talking about. Are we fucking, or being friends?”

Vickie laughed out loud. “Yes.”

“Yes what?”

“In case one, you are fucking. In case two, you are friending.”

I sighed, taking a bite of the pizza, thinking.

Sex had become a somewhat common topic in our conversations. Not a lot, but maybe it had come along once a week or so. I had found myself becoming much more comfortable talking with her about sex.

“Girls,” I finally said.

“For fucking or for friending?”

“Both!” I said with a laugh and a quick bite of the pie.

“Okay ... why?”

I shrugged. “I think being with a girl for the first time would be a more tender experience. I mean, we know what we both want, right? we know what we both like. And a girl’s not gonna cum in you and get you pregnant!” We both let out a laugh. “And loving...” I shrugged. “I have met some real bitches in my life. But, some of the sweatest souls I have known have been women.” I took another bite, chewing thoughtfully. “You are one of them,” I said quiety.

“Aww!” Vickie walked over and gave me a little hug before returning to her piece of pizza.

“Now, what about you?” I asked.

“What about me what?”

“Boys or girls. For fucking and friending.”

She laughed. “Vickie, I have done both. Girls, all the way. All the way.”

I leaned forward. “Tell me about them.”

She leaned forward and told me.

Her first time with a woman had been in college. I mean, wasn’t that true for everyone?

Damn I had wished I had gone to college.

Anyway, she was in her freshman year, rooming with a real terror of a roomie. Girl was rich, a bitch, entitled, spoiled and a slut all rolled into one.

Generally, she treated Vickie like shit, like she was a servant stuck in the same room. “I am going to go into a sorority some day, you absolutely will not,” the girl told Vickie in the heat of an argument one night.

One night, the girl came home almost dead drunk. She was in such bad shape, she had stayed at the entrance of the dorm for more than an hour, trying to remember how to get to her first floor room which was three doors down from the hall. When hearing about this, Vickie helped her back to their room and put her to bed, despite having mumbled insults hurled her way.

In the middle of the night, the girl threw up on herself. Vickie cleaned her up, changed her cloths and took her cloths to the laundry room and gave them a good wash.

The next morning, the girl had soiled herself. Vickie again undressed her, took her to the shower, cleaned her up and helped the girl dress. By this time, the other girl was mostly awake, but very quiet.

As Vickie cleaned up their room the rest of the way, the other girl sat in a chair, head down the entire time without saying a word. Then she burst into tears.

Vickie gave her a tight embrace, because that is what Vickie does, letting the girl cry on her shoulder. Finally, it all spilled out: Her father was about to go to prison for tax evasion, her mother had already left the family, the money was about gone, her boyfriend dumped her, she felt terrible about her family because her father had been quoted making racial slurs several times in the local paper, and she was afraid she was about to fail out of school if she didn’t get her act together.

“I can help you study,” Vickie told her. And she did. For the next couple of weeks, the pair barely left the room, studying all waking hours. If they left the room, it was to study outside. The girl aced midterms and the two parted for winter break.

When they returned, Vickie said it was like she had a different roommate. Her father had been sentenced to prison. The house had been seized, along with almost all of her possessions. Her mother let her stay at her place – it was a much more humble abode, but it was happier, more comfortable. She said her mother seemed more loving, more caring without her father around.