When one is floating on the river of denial, do NOT throw them off their raft.

I went to the retina specialist today.  Scans look good. There are no bleeders. Yippee!  Then I cautiously ask/state “I am getting an injection today?.”  To which the reply “I thought we had this conversation”, “I am not comfortable letting you go without treatment”.  The only way I get to go 12 weeks between appointments is to agree to an injection.  Which at this stage of the game, I would rather not visit the Eye Center any more frequently than is absolutely necessary. Then I ignorantly asked--basically I really should have just shut up here and not dug deeper, but nooooo I had to ask the next question on my mind--“So how long will I be getting injections every 12 weeks?”  Seriously, I am a sucker for punishment.  The answer came back “Until the drug stops working”.  Oh and did I stop there, no I kept going because I was on a roll.  Well that brings me to the question “Does it stop working? And I don’t think I want to know the answer to that.”  The answer came, despite my saying I don’t want to know. “Yes, Avastin eventually stops working, regardless of your condition that you have. Avastin eventually stops working for ALL patients.  Seriously? HELLO? Did you not get the “I really don’t want to know the answer” statement?  Wow, way to pop my bubble of denial.

I guess this is where I get to practice everything I have learned over the last several years.  I have learned to live only in today and not worry about tomorrow.  I can’t predict the future. I can’t make decisions based on future ‘possibilities’. All I can do is be grateful that the drug works today, that I have the vision I have, and to live my life to the absolute fullest each day regardless of what the future holds.  Carpe Diem!  Ok, Carpe Diem tomorrow, I am tired and my eye hurts. J

My wings have arrived!

When I started this blog I had no idea that I would consider cane training let alone embrace it wholeheartedly and love it.  However, since the beginning of this eye disease I have had fear, anxiety, and uncertainty.  I did not understand that cane training would make those fears, anxieties and uncertainties disappear or become more acceptable.

When I go out walking with my cane or navigate a place I have frequented often with my cane, I now have confidence, peace, and acceptance.  I literally feel like I have wings.  Can I see any better? No. But now that I have the cane I can look up while walking.  I can walk faster and actually get a cardio workout. I can see (in general terms, not details) people coming down the path and when I get close enough I can smile and say hello, forget the fact that I can’t see their face or identify them.  I have spent the last two years staring down at my feet afraid of tripping, running into someone, or some other catastrophic event because I can’t see well.  I have shied away from getting outside and doing much of anything because it is too exhausting to manage all the fear and anxiety.  But now I want to go out rain or shine, sleet or snow, warm or cold because with my cane I am NOT afraid.  It doesn’t “see” for me but it gives me enough information to process what is critical quickly and be o.k. 

There are so many things I didn’t think of nor imagine the cane doing for me.  For example, when I am out walking and the sun is starting to dip in the sky and you get that bright light where everything is completely washed out and difficult to see even as a normal sighted person, my cane helps.  If it starts to get dark and I am out and about walking I don’t need to rush home because vision is going to decline as the light does, my cane helps.  If I am in a new location with stairs, tile floors, obstacles I am not familiar with, the cane helps.  And most importantly when my brain is just tired of all the visual inputs I can close my eyes and continue to walk and my cane helps. 

I have missed two years’ worth of activities around me because I was so busy staring at the floor. I am looking forward to observing, to the best of my ability, all that is around me. If you have an eye condition that causes low vision, no matter how low, I would recommend you try it.  You can always do an evaluation and be assessed on whether it would help you or not, but take it from me you’ll be glad to just have the knowledge of what it “can” do for you.  I thought of about 10% of the things the cane could help me with and I had no idea of the 90% it would give me.  This has been by far the greatest gift ever.

Freedom, it comes in the most unusual places

I have been writing lately a lot about cane training.  It is the last thing that I have done to complete all my adaptive training for this new reality called “low vision”.  There are a lot of different emotions that come with low vision: grief, fear, frustration, exhaustion, to name a few.  When I started the training I thought “this will be great for once in a while” but instead I am looking forward to using it a lot more frequently than that.  It has given me a freedom that I never expected.  The very object that is a picture of my disability, a symbol to the rest of the world that “hey this person has a vision issue” has become the one thing to bring me the most freedom.  Low vision is a very hard concept to explain.  People get “blindness” but low vision or vision that changes based on light, weather, conditions, locations, etc. is a complete loss on most folks.  They “get it” in the moment you are explaining and then they’ll turn to you at a coffee shop and point to the menu board and ask “what are you going to have”? They are not clueless; they just don’t live in my eyes.  On the outside I look and behave “normal” but when you cross into those areas that are outside of my ability to “see” there are no obvious cues until I say something or one observes my struggle. (Ask my kids about a game I play on the computer where I have to use the mouse to click on a beetle…they think it is amusing to watch, because it makes my vision issue really apparent…we’ll pray for them later.) 

I have been out cane training on multiple occasions.  It has given me so much more than just comfort when the lighting is bad.  It has allowed me to look up and try to interpret the rest of my environment while affording me the luxury of “feeling” what is at my feet so I don’t trip or run into something.  It has been wonderful.  I finished my training a little over a week ago and on that day I ordered my cane.  It will be delivered next week.  No big deal right?  But I am actually feeling like Linus without his blanket.  My security is gone.  It is the most bizarre experience.  I was griping about going out walking in this miserable cold and I would have to psyche myself out for staying out 20 minutes and now I don’t have the cane and I am pining to go out walking.  What up?!  The one cool thing about the cane is even if people question why I have it when they can’t see any outward signs of my issues, if I do trip or run into something there is an instance “Oh, now I see why she has the cane.”  However, if you are particularly snarky I might beat you with it. J