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.  

Update

I saw my retina specialist today.  I had another injection of Avastin (see previous posts if you don't know what this is or what it is for).  However, prior to injection my retinal scan showed much improvement from last month.  My vision is at 20/70 (and as the doc said I had a 6 line improvement of acuity). Last month it was at 20/200.  The good news is that this treatment works wonderfully for my condition as long as it is an actual blood vessel growing.  Also the fluid/blood that had accumulated was about 90% absorbed.  I guess I have greeted today with cautious optimism. It won't get much better than the 20/70 because the level was reached by an expansion of a scar that is permanent and non-reversible.  I'll take 20/70 over 20/200 any day.  Thank you God for a great outcome today.

Relax, reflect, refocus, and restart

Sometimes in life things get kind of crazy, people die, friends get sick, and my sight declines.  I used to think that I thrived in chaos.  I have since found out that only chaos thrives in chaos.  I don’t get anything done, I am not efficient, and I really can’t stand the turmoil.  Once you have found peace in your life and how to keep that peace, all the frivolous chaos makes it way out the door.  When my life has circumstances completely out of my control it is like stepping outside in a tornado.  The wind is wiping around, you can’t see, and it is dangerous.  When I can just relax and pause in the midst of circumstances, answers surface.  I don’t have to solve anyone else’s problems but my own.  However, it can be difficult to see the line dividing the two.  You really have to slow down long enough to be able to observe and take in all the information before you can make any decisions.  Once I am able to relax, I can reflect on what is my responsibility in the chaos.  I then reflect on what action I can take to move me closer to peace and farther from the tornado brewing outside.  I then refocus my thoughts and game plan.  I do the things I know that will keep me from the chaos and then restart my journey.  Life is life.  You don’t get to sign up for what, how, when or where anything happens.  You don’t get to vote on anything.  Life is what it is.  The only thing you can change about life is your attitude toward it.  My attitude today is to put one foot in front of the other because as long as make forward progress, this current circumstance will change.  It will change not because those anxieties are gone, but living in the truth and acceptance that I can’t control people, places or things.  When I am in right relationship to life, my God, and people the burden of running it all is lifted.  Today I can choose to stay inside away from the weather of life (not isolated but safe).