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.

Trust God, or freak out

I am so glad that I have options.  The last several weeks have really been a test to see if I will let go of the things that I cannot control and truly trust God with the results of ALL of it.  See my problem is I can relinquish 75% control, maybe 80%. But when I have to really TOTALLY let go, it is hard. As someone said recently, “You can tell the things I have let go of, they have a lot of scratch marks on them.”

I need to LET GO of the future of my eyes, easy, right? No, not really.  I have a condition that has NO prognosis, NO decent data that shows discernible trends, NO promise of a good visual outcome, nothing.  All I have is today and where I am at today.  That is it.  Seems a lot like hurdling oneself off a cliff and saying “I have the parachute, if I need it, but for now we are just going to free fall.”  Your job is to NOT freak out and pull the rip cord too early. That gives you a lot of mental space to, um how shall we say this, FREAK OUT.   I have all this time to think about hitting the ground without ever touching the rip cord.  Oh, and my depth perception is way off which means objects are either closer or farther away then they appear.  Yippee skippy, life does not get any better than this.

Today, this is all I know, I had an injection last Thursday and will be having one at least quarterly.  For now, I can accept injections four times a year.  And in between injections, I will continue to do as much vision rehabilitation training as possible.   

A disability that isn’t visible or obvious

The thing I have found with having a vision disability is that people just looking at me see nothing different about me.  I don’t have eyes that show obvious disease. I have adapted quite well. The only time it becomes apparent is when I am suddenly in dimmer light, or asked to do anything that requires fine tune vision.  Seriously, I drive myself to the store, buy items and then at the register I have to ask for them to point out the line on which to sign my name.  It isn’t obvious and a lot of times if I don’t say anything it just looks like I need bifocals or more sleep.

For me living inside this disabled body I feel like I never get a break from it.  I am always aware of my short comings in sight. It is glaringly obvious there is a problem everywhere I lay my eyes.  The difficulty is that because I am ALWAYS aware of it and everyone around me isn’t is hard. It is hard because I have to constantly say “I am visually disabled…..can you help me with…” I have to live with this reality 100% of the time and to have to continually “say” it, just makes the sting of the reality hurt that much more. It reminds me when I received my approval from Department of Vocational Rehabilitation that stated “you have a significant disability”.  It is almost like if you or anyone else doesn’t have to state the obvious out loud, it won’t be true.  Well, it is true. And even though it is true it doesn’t make it any more palatable.  It becomes a struggle not to hide from it.

I have found as of late that I am constantly covering parts of my face with my hand.  It is just something I do without thinking about it.  After some serious reflection I realized that I am trying to hide behind my hand.  I feel so exposed and out there all the time that I just want to duck out of sight and maybe no one will notice. I am really hoping that this gets better.  I hope I can just go straight to stating the fact I have a disability and ask for help. I hope I don’t have to hide behind my hand for much longer. I hope that soon I can feel alright in my skin and that I can actually feel normal again.  I emphasize “feel” because physically I will never have normal eyesight again.  Thankfully I know several people who have all varying levels of vision loss and am inspired by where they are at in their journey’s and that one day I will cross over and feel at home with my disability like they do.

Low vision causes the need for practicality.

I was struck the other day by how much low vision has etched itself into every aspect of my life.  Specifically, I was looking at some dress shoes I own and was struck by the thought “Yeah, like I’ll ever wear those again.”  It isn’t that I don’t like the shoes, or that they aren’t classy; it is simply I can’t see the ground where my feet are and to walk in heels is ridiculous.  My feet are thinking “oh THANK GOD she can’t wear those any more, they make me hurt.”  But seriously, dress shoes or heels of any kind are inviting disaster to my already tenuous state.  I had already been down the road of asking if there are any dress shoes that are comfortable.  The response I got was, there is no such thing as “comfortable” dress shoes for women.  I just want you to know, that is WRONG on so many levels.  I watched the teen girls at the high school with their 4+ inch heels and think, wow in a few years you are really going to understand how stupid that really is. How many times have we worn shoes and destroyed our feet for what, a compliment? I think I am getting cranky in my middle age years.  Any way this blog wasn’t supposed to be me gripping about shoes.  It is about how low vision changes a lot of stuff.  I can’t even see my earring rack anymore and so for me to choose to wear earrings is a big deal. The main thing is that if I am dressed up in any way shape or form it took an enormous amount of EFFORT and time.  I think the time piece is what really bogs me down with this whole vision thing.  Everything takes extra time and sometimes it simply isn’t worth it.  Thank God I was never one to wear makeup, I’d never sleep.

A tribute

One of the individuals that have helped me on this journey is an optometrist that is trained in low vision.  Unfortunately, he passed away last week from complications from multiple myeloma he has battle for 2 years.  My father died of the same cancer 16 years ago.  I am reminded today of just how incredibly helpful this individual had been in my journey of low vision.  When he was out on medical leave doing lifesaving procedures he continued to be available for questions and worked hard at finding answers.  He was always kind, generous, thoughtful, and patient.  He did several of my low vision evaluations. That is where they do an extended eye exam to identify how much vision you have and what you are working with so they can recommend various training and tools.  He always took time to do a thorough exam and you never felt rushed.  When my insurance wouldn't cover the low vision clinic I go to he helped me figure out a way to get what I needed with the insurance I had. He is the reason I am over at the Center for Neurorehabiliation learning how to drive with a bioptic device. It was actually when I had contacted my OT who does my behind the wheel training that I was informed of his passing.  He will be greatly missed by his community.