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!
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…