Monday, August 27, 2012

Another chapter in this so called life of low vision


Anyone who has suffered a loss will totally get this post.  When my father was diagnosed with cancer 18 years ago I remember all the feelings that went with that day.  Any time you are told that something bad is going to happen and they just don’t know when, you are left hanging.  You wait on pins and needles through every chemotherapy session, trip to the doctor, or new symptom.  You go through all the stages of grief, multiple times over.  Then you just wait.  Usually when you are just about to exhale, and let down your guard, thinking maybe it will be all right, something gets thrown in and you are back in the tornado of grief.  Mastering these storms in life take practice, work, courage, grit, and any other character trait you can muster.  Sometimes the sheer act of getting out of bed is heroic, yet only fellow travelers will get that. Everyone else who has a normal, uninterrupted life, are clueless and sometimes downright hurtful.
I have been on a roller coaster of emotions since May of 2011.  At that time I had the experience for the first time of my vision tanking and not coming back.  I had a preexisting scar from a treatment back in the 90’s decide to expand.  Unfortunately, since the scar was located right up against my central vision, it expanded into that region.  Remember, I have 0 central vision in my left eye.  100% of my fine tune, 20/25 vision was my right eye, and now I have just lost a chunk of that.  I have not obtained anything better than 20/70 in my right eye since 5/11.  The roller coaster is that prior to 5/11 I had my vision get as bad as 20/100 but return to the 20/20 to 20/25 range. Post 5/11 I have had my vision go all the way down to 20/200 in both eyes (that is legally blind), and I have had every acuity between 20/80 and 20/200.  Every specialist visit my acuities are different.  I used to be able to go to my visits confident, knowing from all my observations whether or not there was fluid under my retina or not.  Those days are gone.  I have gone in thinking I was fine, and there is a ton of fluid and an active blood vessel growth and then other times I go in swearing my vision is altered and they cannot detect anything.  Until 5/11 I have had some semblance of knowing where things were at (aka false control).  Now I am completely in the dark (no pun intended). I have to see the specialist about every 6-10 weeks and you could literally just throw craps dice on which way that visit is going to go.  The bottom line, I am trying desperately to get on top of the erratic feelings, and I don’t know if it is even possible.
 Then you add caveats like I got reading glasses and I am now able to read a book that isn’t 3 inches from my face.  It isn’t as far away from me as a normal sighted reader, but it is less stressful than at my face.  However, my problem is this: I can now read and my emotions immediately go to “how long is this going to last?” Now if you have never experienced the feeling of “waiting for the other shoe to drop”, you are at about this time thinking that I need to be more positive, or some such thing.  However, when you have gone way up high on “things are looking good” to the way low of “everything is in the crapper”, you know that after a series of ups and downs you can no longer just “be positive”.  Your emotions go to the place of “what do I need to do to find middle ground on this”.  The drive to not fly all over emotionally is tremendous.  All I want is normalcy and balance, but I have a disease that is wreaking havoc on any chance of that.  In a lot of ways it is a conditioning, being ready for anything at any time yet not letting the emotions of either get the better of you. And almost more importantly, not allow yourself to go into the fear of “what if’s” but stay in the present moment, whatever it brings.  

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