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!

Head space, it takes practice to stay there.

More and more I am learning to get myself into a good head space.  What is that you say?  That is when you feel completely at peace, your skin doesn’t feel foreign and you are not frustrated and angry with the world.  I know HOW to get into a good space, staying there is the issue.  It used to be a fleeting thing, but it is getting easier and better over time.  This is what I have learned (and we learned this as wee ones).  Practice, yup that’s right, practice is the answer.  You have to practice choosing right actions. Practice not getting wound up too tight.  Practice asking for help.  It isn’t fun.  And there is a certain chord of pride that rears up and says “Ha, I don’t need all this stinkin’ practice”. You know that inner two year old we battle daily? The one that screams “I do it, I do it” as they tip an entire carton of milk over and watch it chug chug chug all over. Once we can get that inner toddler to stop touching stuff, sit and be quiet, then we can resume the act of practicing.  The problem today is that I have spent a lifetime of practicing the bad habits of stressing about things over which I have no control, letting other’s behavior eat my lunch, and letting every argument or misunderstanding become a personal crusade for me. Now that I need to reprogram these behaviors and I can’t just do it overnight, I have to practice doing it right.  This is where all that Lamaze breathing we learned comes into use, you breathe in the “good/right” action and breathe out the “bad/negative” one. O.k. now you stay there breathing and I am going to go out and smack something. You get it; else you wouldn’t be following my blog.

Profound; as actual sight diminishes, spiritual sight increases.

Some of you know that I have struggled with being disabled and a believer.  And you also know how I have been hurt by well meaning, good intentioned church-folk who have prayed for my healing at ad nauseum. Well, I was listening to one of my favorite authors and she wrote a piece in her book about when Christ was resurrected from the cross He didn’t get a brand new, whole, physical body. All who saw Him could see his scars and the physical aspect of His suffering. It reminded me: there was one He appeared to that couldn’t even recognize Him, but only knew Him by the sound of His voice.  And another had to put his hand into the cuts in his side to dispel his doubt.  Wow, is that not profound?  Jesus, the son of God, was fully restored in spirit, but not in human body.  It makes me pause, because my experiences of the last several years have been a spiritual growth by leaps and bounds, even though my vision continues to decay. My question is, why do so many focus on the decay and not the growth, that if one would ask a few simple questions would become very evident? Did anyone ever think maybe the words ‘I was blind, but now I see’ was in the spiritual realm vs. the physical? I don’t doubt God heals today, however, my spiritual eyes can see far more today than they ever have before even though my actual eyesight is poor. Go figure.

Lost things….translates to lost mind.

I am tired of losing things.  I swear that every time I am trying to efficient with my time and energy it is always centered around something that I have misplaced, lost, or can’t see.  I had the problem before my vision issues, however, having low vision makes this phenomenon that much more AGGREVATING.  I swear I am in a perpetual state of “looking for something”.   And what is completely maddening is my brain sending this signal of “I swear I just saw that thing…..”  The problem doesn’t stop there, it only begins and evolves into this multi-faceting treasure hunt that makes one want to go back to bed and start the day over.  I wanted to list something on Ebay this morning.  This item has been in my WAY for months and here I was happily typing away a description of the item and my brain goes “Hmm, do you know where this item is right now?”  This item that has been on my desk, on the floor around my desk, on every surface near my desk is suddenly gone.  So, then I think, no problem it has to be somewhere nearby because like I said it has been IN MY WAY for MONTHS.  So I spent a good portion of this morning searching.  Did I find the item?  No, but I have discovered numerous projects, items that need to be dealt with, and an irritating amount of minutia, still no item.  Then I start asking the family; “Hey has anyone seen this item?”  The responses come back “oh it is in the office”; yeah like I haven’t torn that room apart all morning looking for it.  “It might be in a box in the basement”; are you KIDDING me?  I have been pouring through boxes and surfaces down there as well.  You know what will happen?  It will show up right in plain sight at a time when I don’t want to or can’t get it listed on Ebay.  I guess my greater frustration with this experience is that it happens all the time.  I actually have a file in Word that is called “LOST Items”.  I go and list my items out there in the hopes that maybe there will be a cosmic shift and the item will be delivered to my literal desktop.  I swear I spend 5% of my day just trying to consume enough coffee to work, 5% actually getting tasks done, and then 90% looking for something I can’t find so I can get it into another day’s 5% of getting stuff done.  Am I the only bipedal on this planet that experiences this? 

My new found herd, moooooooooooooo!

When you are dealing with any of life’s hardships, you need a herd.  A herd is a group of people who are in varying stages of what you are going through. They are seasoned veterans, newbies and everything in between.  You have to have a group of people (or at least I have found this to be true for me) that you can identify with.  I have to have people I can call and say “It sucks to have low vision” and not have that person tell me I need a better attitude, or pray more, or eat more herbs, or find a solution for it.  I need someone who can say “You are right, it sucks, but it does get better”, “there is light at the end of the tunnel and I have travelled it and know it to be true”.  There are certain human conditions where pat answers don’t cut it.  I don’t need better “chi”, or to organize a Zen garden, I need to know that when I come out the other side of this there isn’t just despair and loss.  I mean honestly, would you tell a marathon runner who is in their last mile to “get a better attitude”?  No, you would tell them that you can see the finish line and that you know that they can make it, that they trained for this and to not quit now.  Sometimes we are so focused on the here and now we can’t see that there is an end point, that there is a finish line.  You really feel like you are going to be running for the rest of your life, and you just might die from effort.  The herd has the effect of encouraging you to keep going, and when you are tired and down they tuck you into the herd and protect you. When you feel safe, loved, accepted, understood, and supported; you have found your herd. My new herd is one comprised of low vision and blind individuals that understand what I am going through can encourage me in the process, and who have blazed the trail before me. Thank you to all those who have gone before me and have made my journey enjoyable, I couldn’t have done it without you!

Some obstacles are hard to navigate, living a life of constant detour.

Wouldn’t it be cool if I pulled up in your driveway with a Seeing Eye dog and white cane?  No, seriously, I am not joking here.  Actually, I really want a disabled sticker for my car so I don’t have to trip and slip all over the snow during the winter (did we have that this year?).  I could just park at the front of a store and not deal with all the obstacles of low vision. But honestly, how would THAT conversation go at the DMV?  So, I have low vision and am not too great at seeing contour, could I have a placard for my CAR?  Somehow I think they would take my driver’s license and say “uhm, we’ll get back to you in a bit” and then disappear into the bowels of the DMV never to surface again. The big joke ever since this eye disease started was the one day (maybe sooner than anticipated at this rate) I may need a Seeing Eye dog.  I think my current dog might get jealous, but for those who know Mocha (he is a tweeny weiney dachshund), could he truly “protect” me and lead the way?  Remember the dog in “UP” where the dog is all happy and looking at his owner, then suddenly says “Squirrel” and is all distracted.  That would be Mocha.  We’d be out, the light would turn red, and then he’d drag me out in traffic to chase some animal that thinks today is a good day to feel big and test fate.  Don’t get me wrong, I am jazzed about one day meeting Jesus, just not on the hood of someone’s car.  Anyway, the realities of declining vision and needing more assistance are part of the reality of my condition.  I guess we’ll cross that hood bridge when the time comes.

Tools....the nitty gritty

The tools I use that have been a ENORMOUS help to me are:
For computer work: Zoomtext (TM) by Ai Squared
For reading: The Colorado Talking Book Library (CTBL) and BARD. and a Merlin CCTV.
I also have a Canon (TM) scanner and Ominpage (TM) Optical Character Reader (OCR): This tool allows me to scan any printed material into my computer and then use Zoomtext (TM) to either read to me or zoom it so I can read it.
I use OTT lights for lighting throughout my home, because they give excellent illumination and color saturation to items I am looking at.
Also you can work with an occupational therapist who will tell you how many "lumen's" need to be for your paint on your walls to fit your particular eye condition.  Then you can go the Sherman Williams (TM) and upload pictures of your interior painting project and look at the paints that are in that "lumen's" category.
Also, do not forget to work with your health care professional on getting free 411 service on your phone.  To be able to just call on my home or cell and ask directory assistance to connect me is a huge help.  I struggle with punching wrong numbers all the time.  (This is a free service with a letter from your doctor).
I have gone to the Center for Neurorehabilitation Services for driving tests and to determine that I am truly being safe behind the wheel.  They did a full evaluation including a piece behind the wheel. 
If you don't know the services in your area and are having difficulty finding information, you can email me or facebook message me and I'll send information your way.  No one with low vision should ever have to do without the services provided by various agencies and clinics.

There is reliance, and then forced reliance.

I think one of my biggest struggles is listening to other dialogue about the importance of asking for help, letting others do things for you, and relying on others.  It is a struggle because these folks get to ‘choose’ their reliance.  Since, my vision tanked I have had to rely on others for pure survival.  It isn’t a choice for me anymore, it is a mandatory.  I think this is why I get so keyed up and frustrated with my circumstances is because I am in a phase of life where there are few choices that aren’t out of pure necessity.  I have to ask for rides at night or I don’t go to an activity.  I have to ask for people to read signs and overheads for me or I completely miss out on what is being taught or conveyed.  I am at a stage where if I don’t ask for help I may get into serious trouble. No longer do I have the luxury of ‘choosing’ to ask for help with anything.  I literally have to ask or stuff will not get done. It is a blessing in that I get to let others help me.  And because there is so much limitation I have no choice to have lots of patience.  So, when there is a talk/teaching on being less “self-sufficient” and more “Christ and other sufficient” I am sorry if I roll my eyes. I know how and when to ask for help, I am just learning how to be o.k. with the “feelings” that go with this action.  It is hard not to feel burdensome.