Surviving

Feeling the warmth of the sun on a cloudy day. A glimpse into a blind billy goat's unique, ever changing perspectives.

2017 10 24: Upon a Time October 24, 2017

Upon a time, once long ago, A boy stepped out into the world. Although the world was full of those things unfamiliar to most like him, he trudged out none the less.

Now you could say that this boy was a tad naive, and you might say that he was a bit unsure, but you would not be incorrect to say that he too was brave, for those things that he did not know didn’t stop him from climbing the steps towards a tomorrow which was plenty full of tomorrow’s dreams that filled today’s nights, for you see, he was a born dreamer of sorts, those same dreams which were familiar to young boys such as he.

Through twisting turns and bending curves, he pedaled hither and there, never ending his chase to discover what an adventurer might wish to write about. His ability to absorb and adapt was only outdone by his curiosity to catch a pace which never fell behind. A simple lad with a sample of truth, yearning for an ample amount to do. His life upon a time hadn’t all been written yet, but his journal still had many pages to turn.

Through all the visions of all his days, he continued to search for an answer to a question he had yet to be asked. An unknown query from a Timeless age, born within a history well before a sun cast his shadow for the first time. A mighty question, though it might be, still, not as mighty as a pure heart born within a lad such as he.

Curious minds of an adventurous kind tend to learn as they live, while living what they learn. By happenstance of chance, his queried tales continued to grow as his shadow did the same. Upon the nights he lie in bed and gazed out at a diamond rich sky, giving way only to an encircling moon. As dawn began inventing the day, the dancing spirits were outdone only by the energy of youth, for it was an energy all spirits couldn’t help pondering possessing, and possess did he.

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2017 07 28: Journal Post Page 46 July 28, 2017

Well my journal finally screamed long and loud enough for me to realize that the story was sitting there, patiently waiting. Sometimes the really important things in our lives get moved to the side. Sometimes our attention becomes swayed towards the next amazing thing, or wonderful thing, or addictive thing, or whatever thing grabs you by the collar and jerks you sideways. I think it’s safe to say that the most important items of our lives always remain on the front of the shelf, so that we can’t help noticing them every time we walk by.

I’m not sure if this story of mine is an attention grabber, but as I’m writing it, it sure as hell is grabbing hold of mine.

Happy summer day to all of ya’s, and I surely do hope this finds you doing well.

dp

***
Page 46
Spring 2012

Spring 2012 instilled many changes into my life. My vision was basically the same, although from time to time the clarity of what I was able to see seemed to grow significantly. The window of vision still remained in the right outer peripheral in a small, vertical crescent moon shape, with a larger window of light perception that brought to me the differences between day and night, light and dark, what I knew was there, and what I couldn’t see. The left peripheral of that same right eye kept reminding me of a possibly total dark future, which I hated with a raged passion.

These small tantalizing slices of better sight usually only lasted a moment or two before I was pulled back into the dull and hazy gray halls of what I had become used to, and what I relied heavily on to help me maneuver my way through the day. The blue colors that I was afforded seemed to be the strongest, which fascinated me, as every time I was startled, the color blue roared in like a cloudless summer sky. I called it Wal Mart blue, and realize now that I’ve probably already told you this. Either way, these curtain calls of color had a great impact on me.

My emotions still came roaring in like a rush of high tide. Some days I seemed to be chugging along at a good clip, not thinking about being blind, not worrying about the rest of my life, not thinking about anything other than the day. I worked hard trying to stay busy, and my computer grabbed the largest chunk of my day.

As I said, the emotions rose and fell quickly, and without warning. Many times I would be overcome with a feeling of hopeless, helpless torment, which usually left me breaking down for a few minutes. It felt like a great power was scouring my heart and soul with a cleansing release of all the worry, panic, fear, frustration, and left me completely worn out. I didn’t like these sudden surges of emotion, but looking back I realize that it was happening for a reason. I’m still learning what that reason was, or should I say, what that reason, is.

That spring I entered the final phase of my O&M lessons with Rosemary. She and I had been trudging up and down the sidewalks of Waterville for nearly two years, and our relationship had grown tighter than ever. I still disliked my lessons, but always felt good about my accomplishments after they were done, and I was writing the overview of the lesson. There was one final assignment that she handed me, and when I first heard what it was, that usual rush of charged electricity set in motion the wheels of resistance that smacked me with the usual reaction, one of which I was neither proud of, or glad to see.

Rosemary laid out the final white cane excursion, but it quickly formed into much more than just an O&M lesson through the streets of Waterville.

To be continued…

 

2017 06 24 Journal Excerpt: Page 38 June 24, 2017

As some memories fade, new ones are born. I wish I could have all of my memories back, but if the unwritten rules say we have to turn over those to gather in these, then I’ll keep trying to make the best of it. Some of my childhood memories are as strong as the ones from last week. How is that possible? How can that be? Such a long time ago, but then again, a couple years ago seems at times as far away as a childhood in Little Falls. Digitally manufactured and preserved by an imagination out of control.

 

My memories of my past have come to visit so many times. Some days I just sit and think about different things. Once in a while I reel in something that I haven’t thought of for quite a while, and usually it builds a smile across my face.

 

I like those the best.

 

Go grab yourself some memories.

 

Deon

 

***

 

Page 38

Summer 2011

 

I have an amazing lady by my side. I know she isn’t happy that she’s reading about herself right now, but she is a part of my story, as she has become a part of me.

 

Thinking back, there were so many times when she went the extra distance to help me realize that my life was very much still worth living. Although my pity prone self pushed back many times, there were those times that it didn’t, and the result was a taste of a world gone by, with a pinch of a world waiting to be.

 

That summer of 2011, we bought several five gallon buckets and set off to grow some potted roma tomato plants out behind the garage. I remember every part of the experience, and that first bite of one of the tomatoes was pure heaven. The plants didn’t yield as much as our traditional garden tomatoes used to, but the smell of the vines, the taste of the fruit was unforgettable.

 

I tried to do as much with my stupid sight as I could. I joked that I could see just enough to piss me off, and it was true. So many times I would strain to see just a little bit more, and each time I did, I became dizzy as hell, almost to the point of passing out a couple of times. I dunno what was causing it, but I soon learned that I needed to accept what I had and learn to do the most with it.

 

My dreams were a trip back then. I would often dream about being able to see, and realizing in the dream that I was supposed to be blind. The dreams inserted the belief that I could see, and my blindness had somehow miraculously come to an end. Eventually, I would wake up, and again, I was reminded that I still couldn’t see. I loved the feeling that my sight loss had come to an end, and wish I could have convinced the moment of the dream to follow me back to reality. Oh how I wanted that to happen.

 

Or did it?

 

There were several mornings in those first couple years when I awoke to see something very familiar. Yes, that’s right. See. Each time the experience was the same. The images of my past, or so I thought, seemed to catch up to me for a friendly visit.

 

As I woke up, I lifted my arm off the bed and swung it into a new position. I saw it. I saw the skin color, the contours of my arm, the color of the wall, the ceiling, even the shimmering ring on my finger. I moved my arm a few times to make sure it was real, and the vision corresponded perfectly to my movement. My heart stopped in my chest, my breath couldn’t breathe, and as I stared at my arm, it stared back. I thought I must be dreaming, but knew I wasn’t.

 

The visions continued on for roughly thirty seconds, and then, slowly, the picture faded into a dull gray haze. I was shocked by what I had seen, and sad to see it go. The experience, brief as it was, sent an electric current down through me that lasted all day. These sightings happened five or six times within the course of a year or so, and to this day I can still see the skin tone of my arm. It was like an old friend had stopped by for a visit.

 

Unimaginable, unannounced, unbelievable, wonderfully unbelievable, simply unbelievable.

 

As I wrote a little earlier, Lynne kept tugging me towards new experiences that proved to be eye opening adventures. I imagine she was trying to get a piece of me back from the past, almost like planting a tomato plant in the fertilized soil, so that it would grow and become something new, something that stretched to meet the sunshine and learned how to grow towards tomorrow.

 

As the metaphors stampede my thoughts, I realize that I am the luckiest guy in the world to have the partner I have. I also realize that so many times my stupid ego has continuously gotten in the way of a good day. Pitiful, selfish, self centered child who had no clue how to recognize a golden opportunity.

 

I forgot what it was like to live, but I was comparing everything to my sighted life. I was comparing apples and oranges.

 

While I waded through the turmoil of existence, I did manage to keep my feet moving forward. I kept reminding myself of the promise I had made to myself to move forward, no matter what, and to never turn away from an obstacle, a challenge, a formidable wall of fear, for those things that proved to be opportunities often disguised themselves as things that I used to veer away from or ignore completely. My old character traits of complacency and laziness wanted to take me for another stroll, and many times I still gave in, until I remembered the goal of maneuvering through whatever this darkened corridor had in store.

 

To be continued…

 

2017 06 13: Journal Excerpt Page 27 June 13, 2017

When something is out of your control, it can be frustrating to no end, especially when it messes with your plans. I’ve had a plan or two impacted greatly with circumstances beyond my control, and as I would shake my head and curse under my breath, I began to understand and learn the significance of patience and understanding. I’ll tell you right now that I’m still learning, and still do get flustered from time to time, but like I said, none of it is in my control.

If my frustrations are caused by me, then that’s a completely different learning experience.
Grin

Go after it, grab it, live it and learn from it. This life of yours wouldn’t want it any other way.

Deon

***

Page 27

Winter continued to roll on through Christmas and the first of 2011. Early in February, I had the privilege of being invited to attend a jobs workshop put on by the Division of the blind in Augusta. Leona was very excited, and when she got excited, so did I.

The first two days of the workshop had me wondering what in hell was going on. The two facilitators seemed to hate the Governor, and made sure that everyone taking the workshop knew about it. They were very unprofessional, and I was left thinking that maybe this was not going to be such a good workshop. The second day of the event, we were supposed to get a storm that afternoon, lasting right through the next day, so they cancelled the classes for the next day, and let us out early that second afternoon. On that second day, Leona came in during a meal break, and sat to talk with me. Apparently she could sense the frustration in my voice as we talked, and later that night, called me to discuss it.

She asked me, and I let into her about how totally perplexed I was by the situation, and did not know how anyone would benefit from the workshop.

She pulled me out of the workshop, and I took it again the next month, which was in March. I am not sure if these two facilitators still do the workshops, but if they do, I pity the participants.

The major event cancelling storm came and went, and the sun was out by nine o’clock that next morning, which was said to be the morning of the biggest storm mankind had ever seen. It was a fairly harmless storm. These days were not going to be able to be made up, so we were going to have to try and squeeze in the work into two fewer days. The facilitators seemed that they wanted to call off that next day in some sort of rebellious tone against the Governor, who had came out and said that if you live in Maine, you should be able to drive in the snow, especially if you had lived here for very long. This particularly seemed to frustrate these state workers, as no Governor that they didn’t vote for was going to tell them when to not take a snow day. It was a pitiful display of spoiled childish behavior, and I was very glad that Leona pulled me out of the workshop. When I took the second workshop, there were people taking the second one who had also been pulled from the first one.

The next event in March was done with professionalism by two facilitators that showed passion and expertise in the materials, and in the way they facilitated the week’s events. I benefitted greatly from the lessons. I still keep in touch with one of the facilitators.

The helper that was assigned to me for the event was Sharon Pottle. She provided the transportation and helped me with reading the printed work in the workshop. We hit it off rather well, and had some wonderful discussions during the half hour trips there and home.

The winter seemed to fly by, although it also seemed longer than the other seasons I had just come through. I missed so many things about the winter. I missed watching the snow fall. I missed being able to drive in the snow. I missed being able to use my snow blower to create the dog paths out in the back yard. I used to love walking the dogs outside after I had finished clearing the paths. It was just so clean and neat looking, and I loved watching them run through the paths. I miss being able to see the turkeys out back by the corn field scratching at the dirt. I missed being able to see the trees after an ice storm. I miss the look of branches laden with ice. I missed so many things about the winter. It was still there, but it just seemed so far away. Sort of like looking at things through a display window at a department store, but not being able to touch the items. Winter seemed to be just out of my reach, along with so many other things.

To be continued…

 

2017 06 11 Journal Post Page 25 June 11, 2017

This next segment was written September 2011. When I read through it I realized again that I often wrote how I felt like a complete waste of time. I felt many emotions, and many of those left me wondering, worrying and wandering through a slideshow of a dark place that, even though I didn’t care for, I found myself struggling to not think about.

I know now that by writing about it, I was facing those fears head on in a way that allowed me to explore different understandings of things that were brand new. Its funny how learning how to touch type opened up so many different things for me. Nothing can veer me away from believing that things happen for a reason, and we are exactly where we are meant to be. This time, today, right now is the start of something new. Each minute of each day is a gift. The present.

Pretty cool, huh?

Deon

***

Page 25

It’s been some time since I’ve entered anything again, so here goes.

Those days when I returned home after the Carroll Center were some of the hardest days I have ever lived. They were also some of the most spiritually awakening days of my life. I tried to have a chat with God on a daily basis. A lot of the chats revolved around me asking Him “why?” I did not know why anyone would be left with the vision that I was left with. It really hit home and I felt continuously like I had done something severely wrong to be left with this. It must have been redemption for all of my past faults and past wrongs. I truly did some soul searching back in those days, as I still do today.

The first few weeks after returning home, I was left with a feeling of sheer emptiness. My wife, God bless her, had poured her heart and soul out onto the table for me and everyone else to see. I wasn’t sure just how much fuel she had left in her tank. She has shown me time and time again what a strong woman she is, and that she is in this, along with me, for the long haul. I can not imagine being in her shoes, back then, or now. I must have seemed like such a lost child. Some days I still do.

The months through the winter were long, hard, and cold. I tried to grasp onto everything that I had learned at the center, and for the most part, I think I did the best I could. I still felt like a lost little boy with no sense of purpose. I did keep in touch with Leona, and she told me what I needed to hear. She always did.

Mid way through December, I managed to get the roto tiller rolled back to the garage area. It was very hard for me to know that the tiller had been out there beside the garden all summer, and had not been used. She talked to me, my tiller. She cried to me to let her have a couple runs through the garden. I was not able to run the tiller for obvious reasons, and Lynne just couldn’t run it herself.

That was a part of me that I had lost that really had an impact on me. It really hit home, and I still greave the loss today. My garden had been such a form of independence to me, without even knowing it. Now as I write this, it’s been a full summer of having no garden, and I long to walk through freshly tilled dirt again. Nothing felt better than walking through cool fresh dirt with my bare feet. I just loved it, and miss it greatly.

As I have said before, I am sure that I will gradually get back into gardening, but it’ll be a completely different feeling. Who knows, it just might be even better than before. We would like to get into some form of box gardening, or a small plot so that we may grow some tomatoes again. I think that’s what we miss the most, the roma pear tomatoes. When I walked past the box gardens at the Carroll Center, I could smell the tomato vines, and it almost made me cry. I crave the smell of tomato vines.

Well, winter came, and the snow piled up outside. I did manage to get the front driveway and a few paths out back shoveled. It was extremely hard, and I look back and wonder just how I did it.

I know that I must have run back and forth over the same shoveled areas again and again, because I could not really see the areas already shoveled very well. I did persist though, and managed to keep the driveway and the paths out back all clear all winter.

I did get some help from Mr. Nelson across the street, as he used his Kubota tractor a couple of times to clean the end of the driveway back. The snow at the end of the driveway was piling in from the town plow, and creeping in to the driveway. I had a very difficult time getting the snow up over the banks with the snow scoop. One of the last storms that we got was very heavy and wet snow. I had to use a regular shovel to get the end clear. I thought I was going to have a heart attack before I was all done.

I used to make a running joke about thinking I was doing such a good job at shoveling, until one day my wife drove up beside me and asked if I would like a ride back to the house, because it seems that I had shoveled right past the end of the driveway, and had unknowingly started busily making my way down the road. I got a lot of laughs from that one.

To be continued…

 

2017 06 10 Journal Excerpt: Page 24 June 10, 2017

This next excerpt was written late summer 2011, and describes the return home from the Carrol Center in November, 2010. I was met with a wall of change, none of which I was prepared for. I know that change is good, mainly because it helps us veer away from complacency. Even though I couldn’t see anything coming at me, my feet kept moving forward.

What we do with change defines who we are. Whether you take it head on, maneuver around it or back away from it, change is gonna come. A pocket full of change is far better than a truck load of complacency.

Ready? Set? Look at you go!

dp

***

Page 24

I left the campus that afternoon feeling sad. I also felt happy. I was a mixed bag of emotions as my son and I headed north on 95, back to Maine, and back to my wife, family and home.

The next few weeks after returning home, I felt out of place. I had grown so aware of my existence at the Center. This was just a whole new ball game. This was the rest of my life, and it was staring me right between the eyes. I didn’t know this thing, this life thing, this blind life thing. I had tried preparing myself for it, but it still managed to sneak up on me anyway. I was not prepared in the least. I never felt so scared and out of place, and needy. I just felt like I was no where near the man I used to be just a few months before.

I did stick with it though. Lynne had done her best to get all our ducks in a row while I was at the center, and this was no easy task. With a loss of steady income and not being eligible for disability for six months, our financial situation quickly became serious. I don’t know how she managed to juggle everything, but she did, and my admiration of her continued to grow. I tried to help her as much as I could with whatever I could, but everything I tried to do seemed to take so long, and was just so much of a hassle. Little ordinary things like get the dogs outside, or swap the load in the laundry, or wash the dishes, or take the trash, all of it was completely different. Completely different in my mind set and how I had to rearrange my brain to be able to do these tasks that I had done a thousand million times before.

You see, on that day back on the 3rd of July 2010, my life took a u turn. Everything I knew disappeared from sight. The sounds and smells and touch seemed strangely the same, but without the sight, even all of those had changed perception. All that I was, and all that I would be, hinged on how I was going to be able to handle the changes that faced me every day, and believe me, they hit me head on. I can remember breaking down, completely crumbling on many a day, with being totally consumed in fear and anguish and anger and frustration and a continuing loss of ability to handle it all. It was just too much for me some days. I still had a hard time understanding how someone could wind up in the predicament I was in. My sight sucked, and for the most part, what I could see, made me dizzy as hell. It was like looking at a pathetically dull, fluorescent scheme of colors just before dark. It really freaked me out, still does. I have a hard time explaining to people just what it is that I am looking at most of the time.

I did have two really clear moments of vision, or at least the most clear, and these were when I woke up the first morning at Tufts, and when I woke up the first morning after returning home after Tufts. Those two mornings filled me with hope that maybe my sight would get better, at least enough to get some use out of it.

Those two mornings I was met with a stark clearish vision field. It was filled with sharp lines of clarity and edges of shapes. It was also filled with these images being stretched and twisted and warped right in front of me. It was the weirdest things I had ever seen. Nothing from the sixties could ever come close.

I can remember hanging on to the wall at the hospital as a nurse escorted me to a bathroom in the hall. I was saying under my breath, “This is just so ffffffing weird. I could not believe what I was seeing, but the fact that I was seeing something set me off on an emotional roller coaster. I cried and laughed. It was something I will never forget. The same sort of thing happened to me on that morning at home also. I was headed towards the bathroom and I was met with the same twisted sharp images that set me once again reeling with emotion. It was like everything I could see was being soaked with water and was starting to drip and run down through my sight, like colors on a canvas running down from top to bottom. It was just one of the strangest things. It really did sort of frighten me. Those were the only two mornings that I have seen images such as those. I have wished and hoped and prayed for these visions, as twisted as they may be, for just one more moment.

I have been told by my Ophthalmologist in Waterville that the damage to my retina is irreversible, and that I have no hope of gaining more vision than I have right now. On that day, it seemed that the last nail closed the coffin filled with hope. I buried it, along with any notion that miracles would ever happen. I know that miracles are just that, miracles, and they could occur under any circumstances, but when it comes to my vision, I don’t hold out any hope for them any more.

To be continued…

 

2017 06 09 Journal Excerpt Page 23 June 9, 2017

I have always been sort of a kid at heart. Growing old has only increased the distance of years, but the memories of the actions remain fresh in my mind. Certain things we feel as a child become embedded in our core. The time spent moving away from our youth might clutter the hallways with a vast experience, but the taste of our childhood often lingers on the tips of our tongues.

This next segment brings back so many different memories for me. Not only the memories of the moment, but the experiences of a child with eyes as big as the starry filled skies.

Ok. Scattered brain tangent acquisition complete. Present task frame re-engaged.
Current journal excerpt initiated.

Deon

***

Page 23

I walked up to the graduation podium that morning feeling like I was skipping along a cloud. It felt a little strange to be able to hear the people in the room, but not to be able to see them.

I made it up to the microphone and spoke about a scared guy that had just become blind, and had come to this place in Newton Mass to try and figure out how to live as a blind man. I was nervous and my voice was shaky and cracking. I felt just like I did in grade school when I had to go up in front of the class to read a book report. I suppose that by not being able to see the audience, it did relieve me of a lot of my inhibitions. My anxiety levels were not as combustuous as they usually were.

I thanked the center instructors, and the staff, and the other students for being there for me. I told of friendships that had been built on hope and faith and drive and determination. A truer foundation for friendship had never been seen by me.

As I ended my words of thanks and praise, I started back to my seat as the audience applauded me, as they had done with the others.

Mike got back on the microphone and told me to turn around and come back to the podium. I was a little surprised and figured that he had a story about the chicken coop that I had helped with.

It wasn’t about the chicken coop.

I turned and walked back to the podium and stood beside Mike. He asked one of the staff to go over to the table where the shop projects were. He told them to bring mine over to the podium. He took it from the staff member, and handed it to me. “Mr. Lyons,” he said, “I would like you to tell everyone the story of this little toy truck.”

I was surprised as hell and wondered why he had picked mine as the only one to be highlighted. I felt very strange, but I also felt very good.

I took the truck from him, and proceeded to tell of the story of a little boy that had told his grandmother of a present that he wanted for Christmas. The audience was hushed as I spoke of the truck and the trials of building it, and of a wonderful shop instructor that made it all happen.

It was a wonderful experience to be able to tell the story. It was a simple story of love and determination and passion and drive and hope and family and faith. It was a simple story from the heart, and as I told it, I got a peaceful feeling deep inside of me. It was one of the best feelings I have ever felt. The whole while I was telling the story, I got flashes of Lynne and Jack rushing through my head. I knew that Matt was filming the speech, and I smiled knowing that he was only a few feet away. Man was it good to have him there. He made the whole day complete.

I ended the story with a tear in my eye as mike grabbed my arm and squeezed it tightly. “Thank you.” He whispered to me in my ear. I returned to my seat with the truck still in my clutches. The room applauded, and after the last person went to the podium, I was swarmed with people from the auditorium wanting to take pictures with me and my grandson’s truck. It was a strangely wonderful feeling.

There were a lot of pictures taken after the ceremonies, teachers with students, students with parents and loved ones. I was asked by Heather to take a picture with her and fellow student Brandon Eiffel. I was glad to. I had grown quite fond of Heather. Some of the other students didn’t care for her. I think it was just her demeanor, but I was able to see through all of that, and I feel that I was really able to get to know her as a person. She always had praise for me and continually told me that I was way too hard on myself. I know this, and continue to be. It is a trait handed down to me by my father. I strive to reach a level of praise according to what I feel his standards were, and are.

I did wonder why my project was selected out of everyone else’s to showcase at the ceremony. I was told later on that it was because my story was something that everyone could relate to. It was so heart warming and simple and full of a Childs vision of what Christmas means. I felt proud and so lucky to have the family that I do. Every time I think of Jack, I smile. It isn’t just a surface smile, but a smile from deep within my soul. It’s a smile that will be with me for the rest of my life.

To be continued…