Grieving just plain takes time, it won't be rushed.

I have been really battling with the current status of my eyes.  Nothing much has changed, accept maybe things continue to be irritatingly unstable and all the work it takes to “rehabilitate” is overwhelming and exhausting.  I realized this morning it feels a lot like having the first layer of all your skin peeled off. I know; gross right? (Not that I have ever experienced that personally, but I could visualize it).  Seriously, that is how it feels.  I feel raw and sensitive.  I want to be left alone and just hide out at home. I want to not FEEL this in any way shape or form.  What I have decided is that I am no longer going to try to push through the feeling and just protect myself the best I can until this whole nightmare settles down some and I can heal.  I’ll be at the grocery store and on the verge of tears for no apparent reason. This last father’s day just plain hurt, even though my father died some 16 years ago.  The skin thing, it feels like all the things that life normally throws at me just plain sting.   I don’t want to be anywhere around people because someone somewhere is going to ask that dreaded question “How are you doing?” It is innocent and genuinely compassionate but when you feel as raw as I do there is no superficial answer that I can lend that won’t be very obvious to the observer I am a flat out liar.  However, I also don’t want to burst into tears either.  I came up with this skin analogy because I keep being just “in my life” and things just affect me much more than usual, like my thick skin isn’t there.  It actually reminds me a LOT of how I felt right after my dad’s death from cancer.  I’d be at the store, minding my own business and the music over the speakers would cut through the comfortable fog I would be wandering in and hit me head-on. Then I would be standing in the produce aisle crying thinking I am completely losing it, when in fact I am simply GRIEVING  a loss.  However, now I am grieving the previous normalcy of my life. I am hurting over all I have lost with the loss of my vision and wondering when if EVER I am going to feel normal again.  I know that it will get better; I have been through grief many times over.  I just wish it would hurry up already!

I think I’d have better luck on Jeopardy than playing the game of LIFE!

I saw the RS the other day and I guess I had forgotten (convenient right?) that I was due for my 3^rd Avastin injection in the normal protocol for my condition.  All the scans and visual observations showed no fluid and no blood vessels.  Good right?  Yes and no, good there is no evidence of activity, bad because I had to have another injection.  I am starting to slide back into the person who doesn’t play well with others.  I feel like I can’t have an opinion. I am motivated by fear, the fear of reoccurrence, the doctor saying not to treat could be detrimental, and the general sense that it’s all going into the crapper tomorrow. I am tired of going to this office and feeling completely and utterly out of control.  Now, I am not talking about going off the deep end (though it is VERY appealing at times). I am talking about having a medical condition that doesn’t consistently behave itself and doesn’t give me any concrete data like, if you do a) then the result is b).  It is more like, let us do a) and the results can be any letter of the alphabet we’ll just have to run with it and hope we can overcorrect if things go the wrong direction.  I hope this makes sense, and if it doesn’t, welcome to my life!   It is such a small population of those of us with POHS that you can’t get any real solid data.  In other words, there are no concrete answers or studies that you can base your decisions on.  You are basically in the dark (figuratively and possibly literally).  I really miss the days where I would go months and sometimes years with no recurrence and when the decision was fairly black and white. You treat, you respond, life goes on until the next bleeder and it was simple, predictable, and easy.  Now I feel like a I have to jump off a cliff every 6-8 weeks and we are all hoping that the parachute opens and if it doesn’t be sure to call down to me “SORRY!”.  

One accomplishment down, and now I need to just pause.

School is done.  My kids survived.  I survived. For those of you who don’t know I had my children in an online school program this year.  I was their learning coach.  Of course, when I signed up to be their learning coach I had no idea that my vision loss was permanent and that I would face some huge obstacles doing my job.  I had to teach, correct papers, review documents and all the lovely things that this permanent loss has made very difficult if not at times impossible.  If I could get the content on the computer I was golden because I have software for magnification. However, there was a lot of trying to read quickly and understand with just a hand magnifier and it was a struggle to say the least.  Now that we are all done I am happy to report I survived and my children aren’t academically damaged.  If anything they are both very ready for the new schools next year. They have both chosen to go back to a traditional school of their choice.  They now have already done a year of “21^st century skills” and since all the schools are implementing this program now, they will be ready and proficient.  My son took two high school classes this year and did phenomenally, so he will be very ready for high school next year. It would have been nice if we could have done more supplemental field trips and days out, however, I think all and all I need to be very happy with what we did accomplish.  The bottom line was I no longer felt like my children and I were under the tyranny of an unsafe and incompetent administration or board of directors. Probably the most profound and awesome experience this year was having my kids laughing and enjoying school and life again. Never again will I “wait and see” if things get better when it is such a huge cost to my family’s safety and sanity.  When folks say “if it quacks like a duck and looks like a duck, it is a DUCK” they aren’t kidding.  So if someone looks and acts as though they have no integrity and consistently make poor choices, it will not change, REGARDLESS of all the promises and right words they say. You have to make a change and do something different.  And for my kids and me this year was a wonderful, peaceful, pleasant change and are all excited about our new adventures next fall.

The GPS says it is here and all I see is a field.

My life of driving and getting anywhere is 100% dependence on my GPS.  I needed to stop at a store today and so I called 411.  Asked for the listing, called the listing and asked for a physical address to plug into my GPS.  I drove to the directions of this device and all of a sudden it says “you have reached or destination, on right”.  I look over at my right and it is a field.  A FIELD, do you hear me?  Like being visually disabled isn’t enough I have to have a GPS take me out to a field.  Wow!  I may be low vision but I know a field when I see a field and that there is a field.  So I drove about a mile farther down the road thinking maybe the store I am searching for will come into my FIELD of view.  Ha.  It was all dirt roads off the frontage road and since I can’t see marque’s or signs or anything with printed word, I gave up.  I came home later in the day and looked the location up on Google maps.  I would have never found the driveway into this place. The moral of this story: even though I am unable to see well my brain seems to think if I just try hard enough it will work out in the end. Maybe I need to just resign myself to the fact of internet shopping.  So, if you are ever out and about and see me flipping the bird at some field, just keep driving and pray for my sanity.  It will get better, it will.

Expectations, they are just premeditated disappointments

When I expect an outcome or plan a timeline for my future, I am setting myself up for disappointment.  We live in this crazy age of planning and forecasting that to let life evolve as we are in the midst of it is downright frightening and overwhelming and to most absurd. When you have been at an amusement park and you hear all the people screaming on the rides, there gets to be a point when you are buoyed up on their screams that it takes you emotionally.  Some people are really good at compartmentalizing that type of situation, I am not.  I am swept away by fear and anxiety, all because the people around me are screaming.  That is how planning/not planning my future feels like, I am waiting patiently and watching things evolve and the whole stinking world around me is SCREAMING. They are screaming I need a plan, a back door, something for when this parachute doesn’t open, I don’t go SPLAT. So even though I feel okay and have a sense that things are going to really work out, all that screaming has me spooked, just like the amusement park.  (Sidebar: those who don’t know me, I don’t do roller-coasters, I would rather have my skin peeled off then go on those.) What am I saying? Please, stop screaming.  It is hard enough to live this life of low vision, I don’t need fear, anxiety, or frustration, imparted to me; I can get those just fine all by myself.  What I need are people in my life that see where there is safe passage and can direct me there. I need to be reminded of what God’s promises “are”, that God has and never stopped having my back, that my parachute will open and that my future will be bright. I was talking with someone last week that shared this statistic: the unemployment rate of people with low vision or blindness, which is working age and not retired or retiring is 70%.  The obstacles I face are big, but not insurmountable, however, when you feel the constant pull of the rip tide and you are expending all energy on fear, you don’t have the bandwidth to pause and wait for instruction.  I have learned this art of pausing and waiting for instruction in the last several months and have gotten pretty good with it. However, all I need is some fool coming up behind me and saying the proverbial “boo” and I quickly lose all that I fought so hard to gain.  The new art I am learning in addition to pausing and waiting; I am learning to not get spooked.  That is just going to take little longer to master. Anyone up for some role playing, I’ll get my stick. 

Audio Visual Media, dominated by our culture, frustrating for the low sighted

I was attending my children’s transition ceremonies today (one from Elementary going to Middle and the other going from Middle to High School).  As part of the ceremony they had the dreaded “video show”.  It is dreaded because a) it causes most moms’ to burst into tears and b) for those of us with low vision can’t see them at all.  It is amazing how many factors play into the quality of my sight.  If there is too much back light it washes out everything I am trying to look at.  If there isn’t enough light I can’t see either.  Then you do things like overheads, videos, or anything visual and I can’t see it.  So what is a visually disabled person to do?  Well I had to ASK, that’s right ask if someone could send me the video to my computer so that I can see it zoomed and close up and therefore actually SEE my kids in their video presentation.  No big deal right?  Well, let me tell you, since I became visually disabled a year ago I feel like all I do is ask for help.  I ask for more accommodations and help in an hour than most people ask for in a week.  There is nothing wrong with the act of asking for help, it is just simply that inner two year old really wants to be able to do this life ALONE and finds the whole process of asking for help to be demeaning, humiliating, frustrating, and downright annoying.  Think back to a time when you had to ask for help.  Think of all the things going through your mind on ways that you could do this by yourself and that you really didn’t need help.  Think of how much you gloated when you did it by yourself and actually accomplished what you originally thought you couldn’t do.  Now, pause, think how it would FEEL if you really needed help and you really couldn’t do it by yourself.  Now, think how that would feel multiple times a day.  Guess what I am learning, I have to learn to shelf those feelings and ask for help.  I don’t get to choose, it is for sheer survival and enjoyment of life that I ask for such things.  Over the last year I have gotten much better and it doesn’t bother me as much anymore.  It was just for some reason today asking for these videos of my kids made me feel awkward, but I did it anyway and I am glad I did.

Off the cuff, but definitely straight from the heart

Yesterday I had the opportunity to share my story and specifically my experiences with having a low vision clinic in my community at a Lyon’s Club convention.  Let me just say, I have spoken in crowds before, but I had no idea how raw it was going to be to share this journey at a public level.  It wasn’t as polished or organized as I would have liked, but it was definitely from the heart. I guess I hadn’t quite realized on a deeper level how important low vision services have been for me.  I made the analogy that when your car breaks down you don’t try to figure out how to fix it on the internet (though some might).  You go to a mechanic.  You go where people are educated, knowledgeable and resourceful.  That is what you do when you are low vision, you enlist those who can and know how to make your life better. Low vision is such an emotional, mental, as well as physical blow you need all the help you can get.  The staff at my local clinic has made this new reality of mine as comfortable as anyone can make it, but mainly they have helped me not feel completely alone. I had also shared how they have turned the light on at the end of the proverbial tunnel.  I do have a future and a purpose, even though I don’t know what they are right now.  The staff and the programs at Ensight are my lighthouse on the rocky coast of life and I am very grateful.  My parting remark was: the cost of getting to the retina specialist $5, the cost of the doctor’s visit and injection of Avastin $75, the value of a low vision clinic and the services provided by Ensight Skills, priceless!