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  

White Cane Training Part 2

After a couple of days out with the cane I got to walk with the cane and a blind fold.  I wasn't too freaked out because the trainer was there and I know that they won’t let me walk out into traffic.  I don’t know what I expected from the experience, but I can tell you this it was awesome.  Immediately, your other senses get amplified.  You really “feel” the ground beneath your feet and the cane.  You “hear” traffic and can determine direction and whether it is going fast or not. You “feel” the warmth of the sun when you step out of the shadows. You “smell” the vegetation. And most of all, you are not being bombarded by a gazillion visual messages that you may or may not interpret correctly.  All the things I normally fear; tripping, falling, or crashing into something is gone.  Since I can’t see at all, there is no anticipating an obstacle. I can’t see any of the things that cause me to question my usable vision. Having all my other senses up is actually comforting.  Feeling the breeze in my hair and the warmth on my face brings me comfort, not fear.  How amazing is it that I can walk down the block with a blind fold and feel comfort.  That may change when I am out by myself but we’ll cross that bridge when we get to it, both literally and metaphorically. 

Who knew that a white cane could bring such freedom

I have been talking in and around the idea of cane training on various posts.  It is a struggle simply because in our world the white cane is a symbol of total blindness, and total blind I am not.  However, it really is to educate and symbolize to the public that there is a “vision” issue and to be polite about giving this person space.  It may be low vision, it may be no vision.  Just like someone who is hearing impaired will wear hearing aids, the low vision can also use a cane.  

During the evaluation I was asked a bunch of questions all to do with the basic premise “What do you want the cane to do for you?” Which on the outside looks like a fairly easy question right? It isn’t necessarily.  I started to dialog about my issues in dim light, night time, and certain areas of town where I refuse to drive and thus have given up going there.  I talked about how hard it is to be in public and constantly staring at my feet so I don’t trip or trip others.  My world’s focus while walking has been a 2 foot by 2 foot square in and around my feet.

Well after we went through all the questions we went outside to go over some basic “cane” techniques.  The cane allows me to “feel” that 2x2 square near my feet and tell me through “sensing” whether I have a tripping hazard coming up.  And for the first time in almost two years I was able to walk down the street LOOKING up.  I had no idea that I hadn’t been looking up while walking for that long until I was walking with the cane and allowing it to tell me what is at my feet that I realized I haven’t seen the world straight ahead for a long time regardless of the lighting.

I had said something during the evaluation about not being able to go to the downtown area of a local community and thought if I could get myself to a bus stop and then take the bus down there, maybe I could get back to some of the activities and locations I used to visit.  At this time my trainer asked me “what if we could get you to drive down within a few blocks of that area, park somewhere it is safe and where I feel safe to drive myself to and then get me out with the cane to that area of town?”  You have no idea how freeing this experience has been.  I have been shrinking my world out of necessity for the last 2 years and now I am being shown and told that I can indeed gain some ground back. I just have to look at my “vehicle” differently.  My vehicle in certain circumstances may be my feet and the cane.  The greatest thing ever, is that now when I am in public walking and have the cane, people will see it and walk around me instead of me taking on myself ALL the burden of not tripping them. The hardest thing for me in the public has been how people get to whoosh by without a care in the world not realizing what a visually overwhelming world that is for me to live in with limited sight. No longer will I have to walk the speed of a snail and feel all the anxiety and frustration of the fear of tripping myself or others.  The very thing that identifies me as visually disabled is the very thing that is going to gain a lot of my freedoms back.  Freedom cannot be found in hiding, it can only be found in willingness. I have to be willing to “expose” that I am disabled, so that others have a chance to respond appropriately that then allows me the freedom to be me in spite of my disability. The only person who lets my disability become an obstacle is me, so I am going to get out of my own way.

Faking it until I make it

Sometimes facing my fear and getting the courage to push through is worse than the fear itself. If you want to find out if you have a fear of rejection or failure, get a disability, it seems to come naturally.

 I assume because I am low vision, that I am unemployable or that if I am indeed employable that folks won’t hire me because I have this condition.  I assume the world at large is mostly inflexible and condemning.  The truth is it is ME that is inflexible and condemning.  I have been my own worst critic and obstacle.  I seem to be geared toward self-sabotage in this area. 

The truth is I actually faced my fear last month and went and substitute taught for a math class.  Guess what?  It went just fine.  I could read the plans, study the material and actually teach the class.  And since teaching that class I have applied to another district and am in the process of getting my application for yet another to be on their substitute teaching lists.

Sometimes dialing back to what is can be more beneficial the FEARING what is.  This is what I know to be what is: I have a substitute teaching authorization, I get phone calls for jobs, and no one has said ANYTHING about me not being qualified.  Even after having taught in classrooms and divulging to staff and students that I am low vision, I have not been black listed.  

The bottom line is that this is where the phrase “Fake it until you make it” comes in.  What that means is that I continue to go through all the motions:  apply, get on lists, answer calls, and work as a substitute and each time I go through all the motions I will eventually feel comfortable in my own skin and be okay with where I am at in this process.  One day I will feel qualified and capable even with my vision loss. But in order to get there I have to do the work, show up, and see that time and time again I truly can do this and I am qualified, in spite of how I feel.

Acceptance, we seem to continually revisit this.

I am starting to learn that acceptance is not a static state.  It is a dynamic state, just like my eye condition.  Some days are great and some are not so.  I guess my goal is to not go so high and so low but to find that balanced spot in the middle.  I saw my RS recently and as always we do a bunch of diagnostic tests to see where things are at physically.  My overall acuities improved.  I was actually able to read the 20/50 line with my right eye and the 20/70 line with my left.  Sounds better right?  Sounds like improvement?  In the doctor’s office, reading letters off the lines is the ONLY place that improvement is seen.  My day to day life has not changed.  How I perceive the world hasn’t changed.  As a matter of fact how I “see” in my everyday life hasn’t had any detectable difference since May 2011, when my eyes declined.  I have had reading everywhere from 20/50 to 20/200 and it doesn’t seem to matter in the rest of my world. 

Here are some examples of my world and how I see. I drove by this open field today that used to be a corn field.  However, there were these mini-goal posts all over the field.  It wasn’t until I got a different angle that I realized that they were shadows cast by bales of hay.  I have had bales of hay look like cattle lying down in a field as well.  Basically, until I can “see” otherwise sometimes my world is just plain warped.  Another, warped example would be those long flags at the edge of a gas station or other store.  I swore they were waterfalls.  And then my brain was like “seriously, didn’t we just turn off all exterior water because we are getting into the ‘freezing’ weather”.  Again, until I caught a different angle I couldn’t gather they were just flags rippling in the wind.  I am hoping that one day I’ll think “waterfall” and my brain will say “no, most likely flag”.  It is almost like learning a new language.  In my world, color and perception are messed up most of the time and it all depends on how much light, the angle of the light, and the angle of the object/s that I am observing.

Basically I need to accept that regardless of the observations in the doctor’s office, my world outside of that office hasn’t changed in almost 2 years.  I need to just embrace that reality and do everything I can to adapt to it.