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.

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.

The paradox of disability

I find that dealing/accepting disability is very paradoxical.  You swing between extremes of realities (actual and possible).  There are physical, emotional, mental, and spiritual realities in the mix as well. The struggle is finding the balance between them all.  For the most part my struggle is in the physical and the emotional aspects of low vision.

Physically I have low vision. On good days in excellent light, you can hardly tell there are any issues at all. However, that is only from an observer on the outside. I, on the other hand, know every minute of every day that I am low vision because of the struggles I face; I just hide it better on those good days.  Then you swing to days where I am physically spent, the light is terrible and it is very apparent I have issues.  Again, from the outsider they may not even understand that the issue is visual.  The dimmer the light the slower I walk, the more I stare at the ground, and the more work it takes to safely go anywhere.  I am constantly looking down because one of my biggest issues is seeing the contour of the ground beneath my feet.  I can’t see dips, bumps, or any imperfections unless there is an obvious huge crack or enough contrast to make the imperfections apparent.  If there is shade from trees my vision is even worse and I can hardly make out anything on the ground.  Several times this weekend I was just walking in a familiar area and tripped because of an unseen (by me) hazard.  This has confirmed to me that I indeed made a good choice to be at least evaluated by a mobility specialist.  However, this is when the physical obstacle becomes an emotional one.

Emotionally I am ready to grab this bull by the horns. I am metaphorically speaking of my physical vision disability. I am ready to do whatever it takes to make my life as comfortable and manageable as possible. I try to eliminate the burdens to others in any way I can and to give me what independence I can have.  However, once I get cane training and I walk out in public with it, it will be very apparent that I have issues.  One of the things I enjoy right now is that I can hide my disability at times.  It is not necessarily that I am ashamed of it, but that I am tired of having to explain and answer questions about it.  Once I bridge the gap of cane training, I HAVE to be willing to have my vision disability be exposed at all the times.  Which honestly, having the cane will allow me to hopefully avoid trip hazards, and also maybe people will give me a little more personal space. What I fear isn’t the looks, or the snarky questions. What I fear is being treated different. 

As I face these struggles and fears both physically and emotionally I need to remind myself that I am indeed different.  I am not different in a negative or a degrading way, but by a condition that was never in my control.  I have to change my thinking. I have to see it differently. Once I can embrace my new reality, the sooner I can help others to see me in a new light. My new reality is being molded by courage, grit, and the drive to not give up. My hope is that as others observe how I am pushing through and making lemonade out of the lemons in my life, it will give them the encouragement that they can face any obstacle in the life, big or small and that the light at the end of the tunnel truly is sunshine and not an oncoming train.

When does being proactive become being neurotic?

There is a fine line between being proactive and being neurotic, I am guessing I am a little of both.  I have a retinal condition that there is no cure, it will most likely continue to decline, and there is no real long term prognosis….rather they won’t give me one.  If you read what the CDC says, my condition (POHS) is the leading cause of blindness in ages 20-40.  I guess I should celebrate that I am over 40 and still not completely blind. Yippee!  I am stuck in the place of not wanting to assume the best, but at the same time not assuming the worst.  However, in the middle there are a lot of obstacles that need to be addressed. My current question is whether to start mobility training now or wait until later after more vision loss.

I spoke with an orientation/mobility specialist the other day for about an hour to answer a bunch of my questions.  Mobility training for a person with low vision has the component of learning how to use a white cane.  Yes, the white cane that you see folks who are visually disabled using.  The thing is you don’t have to be “blind” to use a cane and it is not just for the most severe cases of visual disability.  I heard a talk on this training and several members stated how it provides freedom on many fronts.  1) It communicates to the public; it informs them that there is an issue here regardless of how it appears. Most people with a visual disability don’t look like they have any issues.  Their eyes look normal and no one knows there is a problem until you can’t read a sign, forms, or you trip on something that is obvious to everyone else.  2) Those that use the cane don’t have to worry about declining light, they already have a way of “feeling” their way around so it could be a bright sunny day or nighttime, and they are set. 3) Trip hazards can be identified without actually tripping. 4) If your family can’t take you out and guide you, you can still go.   You can see from what I have listed, there are some great reasons to be cane trained. However, there are other obstacles that need to be overcome first.

Remember one of my previous posts about the turtle with its shell ripped off?  Well stick me out in public with a cane, and you might as well have a Las Vegas billboard over my head with flashing lights.  The obstacle is an emotional one.  Am I emotionally ready to embrace this next phase of training? Am I willing to push through the feelings of being exposed and learn something that has the potential of saving my teeth (literally) because I don’t have to trip and fall?  Can I deal with family and friends possible negative reaction to it? The feelings embodied in this are the feelings I have felt through this entire process, the delicate balance of asking for much needed help and wanting to hide.  This whole new existence is just plain hard.  I have been doing better with asking for help when I am out and about.  However, there seems to always be that next step that requires even more exposure and more vulnerability.  I’ll be glad when I get a thicker skin with this stuff.  So the next time you are out and you see a turtle with no shell and a white cane, try to say something nice. I guarantee it will be appreciated.

Giving of yourself vs. wallowing in self-pity.

If there is one thing I have learned about the grief cycle is that you never know how you are going to feel at any particular time or day.  You have good days and bad moments.  I have found that when things are really intense and overwhelming, if I can find something to do that is of service to others, I will have a better day overall. I am still in the throes of training and rehabilitation for my vision loss, but I still find ways to serve others.

Yesterday I had my first training with my bioptic.  And considering I have a teen learning to drive I am remembering how exhausting it is to practice driving.  The bioptic is basically a device attached to a pair of prescription glasses that is a telescope.  You can drop your eyes into the telescope for seconds at a time to pull in objects far off in the distance that my sight no longer sees.  It can pull in street signs at intersections some 1-2 blocks off. It can help with seeing bicyclists and other objects in the distance.  It basically provides a little more information sooner than my sight can do, information most everyone can “see”.   After about 25 minutes driving with this device, I was tired and a little nauseous.  The key is I did it and the OT thought it went really well.

Since I was already in town I decided to go and donate blood.  I have wanted to do this forever, actually since my first child was born 15 years ago, because that was when I discovered I am a universal donor.  I am without excuse not to be donating regularly. So after my exhausting driving session, I went to the local blood bank, went through all the hoops to donate, and donated. I even got to hold my unit of blood afterward, and it was cool (actually it was warm, but you get what I am saying).  I am now in the system and soon I’ll be able to sign up to be on the bone marrow and stem cell registries. 

The sheer fact I stepped outside of my “I don’t want to” attitude or my laundry list of excuses for why not “today”, is forward progression.  Forward progression means growth, and growth means I reside a little less in self-pity and grief. The thing with grief is it simply takes time, so I might as well do anything that passes the time and helps others.

I feel like a turtle with its shell ripped off.

Every time I say this title out loud it makes me giggle.  I picture a turtle with no shell and that just seems wrong on so many levels.  Poor guy is vulnerable, freaked out, and just wants to go back to the safety and comfort of his shell.  That is exactly how I have been feeling lately. And I have been basically told that it will take three years for me to grow a new shell.  Yikes! Grief is just like that.  When you lose anything or anyone close to you it sends you through a myriad of emotions that are amplified.  There is no wrong or right way to grieve; you just have to pass through it, and it takes time a.k.a. shell growing back in three years.

 I got to go to back to school night this week.  It should be no big deal right? Meeting my child’s teachers was awesome.  Hearing about their classes was cool.  The process took looking at a map (spouse did that), finding classrooms (spouse did that too), and getting from class to class in 5 minutes.  During those passing periods there was a mass, and I mean a MASS of people milling around.  With my low vision, I cannot see anyone’s face that isn’t within 2 feet of mine and even then it is only partial. I see lots and lots of people, but no faces.  I can no longer detect social/facial cues and it is a little freaky (ok a lot of freaky).  Then you add that the spouse could see door numbers and would duck into the appropriate room while I just walked on by, missing his departure from the mass of people. I was paying attention, I really was, but with all that visual input from the sheer volume of people, and my trying not to get run over or bumped into, I missed the cue.  I was feeling a little exposed in my disability.  I know in my head that 99.9% of the population is literally oblivious to the fact that I am having any difficulties what so ever.  However, I feel what I feel regardless of what is probably truth note the aforementioned amplified feelings.

It dawned on me afterwards that I have always been more of an introvert on personality tests than I am extroverted. I used facial cues to help me be more at ease and a little more gregarious than what my skin or mind might feel.  Having no cues and smiling like a fool with no way of knowing if anyone is smiling back, or is friendly, or is even engaged on this planet is overwhelming.  By the end of the night and after arriving to the safety of my home, I literally felt like I had just had a round of electroshock therapy and was ready for my nap.  This is one of the parts of the grief process with which I have a hard time. It is the part where one feels EVERYTHING, while the world just plugs along uninterrupted in their world by anything catastrophic. Don’t get me wrong, I have plenty of times been the one cruising along with no interruptions, it is just I have gone through enough loss that I recognize that is what I am feeling now about my vision loss. You can tell you are in this stage of grief, because someone will share with you how horribly sad there are that their finger nail is chipped and you have the incredible urge to slap them and say “get a grip, it isn’t like someone died or something”.  Luckily, I have more self-control than that, but you get the point. So I journey on in spite of feeling exposed and afraid and hope that the amplified feelings subside sooner than later. 

Another chapter in this so called life of low vision

Anyone who has suffered a loss will totally get this post.  When my father was diagnosed with cancer 18 years ago I remember all the feelings that went with that day.  Any time you are told that something bad is going to happen and they just don’t know when, you are left hanging.  You wait on pins and needles through every chemotherapy session, trip to the doctor, or new symptom.  You go through all the stages of grief, multiple times over.  Then you just wait.  Usually when you are just about to exhale, and let down your guard, thinking maybe it will be all right, something gets thrown in and you are back in the tornado of grief.  Mastering these storms in life take practice, work, courage, grit, and any other character trait you can muster.  Sometimes the sheer act of getting out of bed is heroic, yet only fellow travelers will get that. Everyone else who has a normal, uninterrupted life, are clueless and sometimes downright hurtful.

I have been on a roller coaster of emotions since May of 2011.  At that time I had the experience for the first time of my vision tanking and not coming back.  I had a preexisting scar from a treatment back in the 90’s decide to expand.  Unfortunately, since the scar was located right up against my central vision, it expanded into that region.  Remember, I have 0 central vision in my left eye.  100% of my fine tune, 20/25 vision was my right eye, and now I have just lost a chunk of that.  I have not obtained anything better than 20/70 in my right eye since 5/11.  The roller coaster is that prior to 5/11 I had my vision get as bad as 20/100 but return to the 20/20 to 20/25 range. Post 5/11 I have had my vision go all the way down to 20/200 in both eyes (that is legally blind), and I have had every acuity between 20/80 and 20/200.  Every specialist visit my acuities are different.  I used to be able to go to my visits confident, knowing from all my observations whether or not there was fluid under my retina or not.  Those days are gone.  I have gone in thinking I was fine, and there is a ton of fluid and an active blood vessel growth and then other times I go in swearing my vision is altered and they cannot detect anything.  Until 5/11 I have had some semblance of knowing where things were at (aka false control).  Now I am completely in the dark (no pun intended). I have to see the specialist about every 6-10 weeks and you could literally just throw craps dice on which way that visit is going to go.  The bottom line, I am trying desperately to get on top of the erratic feelings, and I don’t know if it is even possible.

 Then you add caveats like I got reading glasses and I am now able to read a book that isn’t 3 inches from my face.  It isn’t as far away from me as a normal sighted reader, but it is less stressful than at my face.  However, my problem is this: I can now read and my emotions immediately go to “how long is this going to last?” Now if you have never experienced the feeling of “waiting for the other shoe to drop”, you are at about this time thinking that I need to be more positive, or some such thing.  However, when you have gone way up high on “things are looking good” to the way low of “everything is in the crapper”, you know that after a series of ups and downs you can no longer just “be positive”.  Your emotions go to the place of “what do I need to do to find middle ground on this”.  The drive to not fly all over emotionally is tremendous.  All I want is normalcy and balance, but I have a disease that is wreaking havoc on any chance of that.  In a lot of ways it is a conditioning, being ready for anything at any time yet not letting the emotions of either get the better of you. And almost more importantly, not allow yourself to go into the fear of “what if’s” but stay in the present moment, whatever it brings.  

Nervous terror!?

I was at my monthly “low vision support group” meeting today.  We had a speaker who spoke about “mobility training” and its importance.  (For those not visually disabled, mobility training is learning how to use a white cane, how to navigate the public transit system, and basically how to get from point A to point B without anyone else’s help but just all the resources and training you have learned.)  The gal shared her story and it continues to amaze me how when someone else shares what it is like for them navigating through visual disability that I start to feel less alone on this journey.  She shared something today that so resonated with my experience that it was freeing in a lot of ways.  She was talking about how whenever she has to go somewhere new that she has a lot of anxiety and gets butterflies in her stomach.  Do you have any idea what it is like to have this sensation on a regular basis (like daily, sometimes hourly)? It is a constant for me right now.

 Here I had been thinking there was something profoundly wrong with me in the fact that every “new” trip causes me an enormous amount of anxiety. Both my kids started new school these last two weeks and I have had to “learn” their traffic flow, the volume of traffic, where to pick up and drop off kids, what streets to turn on, and all the while with reduced vision.  I literally have been coming home feeling like I have just run the track for an hour.  I am overheated, a little nauseated, and completely exhausted. It makes me cranky.  I have been successful, in that I am slowly learning my new routes, and all the nuances of them without incident, but I am not past the fear just yet.

I have to get to places now with lots of time to spare so I can “relearn” with all my other senses, what I used to be able to do by sight alone.  The gal today shared how she had communicated she wanted to get to an event early, so she could figure out the lay of the land and then when they arrived late she described how I have felt in similar situations. In the height of an event there are so many competing noises, sensations, and obstacles that it is really hard to get one’s bearings. What sighted folks don’t understand is that by trying to dictate to us what our surroundings are doesn’t help as much as “feeling” it for ourselves during a quieter time than peak activity. Just as yelling at a foreigner isn’t going to make them understand our language any better; dictating orally what my environment looks like to you doesn’t help me “understand” my surroundings.  I have had the sighted get frustrated with me and until I can hear, touch, and use my other senses to explore my environment, I will never understand dictated directions.  And just like a foreign language, being visually disabled takes time and practice.  Please do not assume you know my needs when it comes to a new environment, it takes what it takes for me to learn it and I don’t need the added stress of your frustration.  You have no idea how frustrating this new world I live in is.  I am just glad that those who have gone before me totally get how this new world feels to me.

Instantaneous panic, is my middle name

The DMV, strikes fear in most people’s heart.  It means long lines, irritated state workers, and the dreadful list of “required” papers that make the most stable individual sit in a corner and suck their thumb.  Yes, that is where I was today.  My oldest can get his driver’s permit now, because he just turned 15.  So after school today we dashed over to the local office and took our number, 16 and they were serving number 90.  It was 4pm and the office closes @ 5pm.  I prayed, a lot.  I didn’t want to sit there all afternoon and then have them say “we are done, go home and try again tomorrow”.  We pushed through.  They did come out and say that the office was now closed and that the doors would be locked and anyone who dared leave was done, no reentry allowed.  The good news, we got served.   We obtained the permit, but not without a little sweat.  I was handed document after document to read and sign (um, I am low vision and can’t read these documents well).  And all the while the gal behind the counter had my license as proof of Colorado residency and address. You know the one that is unrestricted even though I am currently self-restricted.  This is the same one that has no indication that I am low vision, visually disabled, or anything.  I am currently working on getting everything into place so that when I do renew my license it will reflect my bioptic training (coming in September), the restrictions that I already adhere to, and everything else to make my actual ID match my life.  Hey, maybe I’ll be honest about my weight for onceJ.  I should clarify, I was honest about my weight, 10 years ago when I was issued this license just that I am not that weight any more.  Actually I think if I was that weight, I’d be sick, or starving.  Since I was the one who brought him to the DMV, I am the only one who can sign his driving log.  If his father wants that privilege, he gets to sit at the DMV and wait for his number to be called and pay an additional $7.  I love the government, I do. Oh, and the best part was when the clerk noticed that I no longer reside at the address on my license (a prior CO address).  She then asked “do you have something that proves you live at your current address”. This is where the “panic” set in.  Then she graciously said “do your checks reflect this address”?  And yes, they do, phew.  It almost sent us to the curb on a technicality.  Then after stressing me out, the gal says “Oh, your current address is reflected in our system”.  I didn’t have the heart (or the guts really) to say “No duh!”

The moral of the story: push through even though the odds seem stacked against you, for the most part it will all turn out in the end. 

When scared, face the fear with courage and if that doesn’t work, run

          I have always been dogged by fear.  I have been afraid of things that one doesn’t even need to be afraid of, but that is just how I am wired. Add low vision to the mix and it adds a whole new dimension to life.  Lately I have been dealing with an enormous amount of anxiety (which by the way, I recently read actually exacerbates my condition).  I have lost a lot of things due to my vision loss, and other things I have to fight very hard to keep.  When you combine that to just life changes that have to be managed, it spells insomnia. What I have learned, is that when Fear shows up I have to pull out the Billy club with “Courage” on it and beat it back into its rightful place.  Below I have listed some current examples in my life where I have struggled and then turned things around. Note: sometimes it takes a long time of struggling before I get the upper hand.

 I sight read to play piano.  I can no longer see the music at a distance and when I can get it in focus it is basically a frame at a time. It takes a certain level of grit to push through and make sight reading work again.  Thus on this front I have decided to go back to some pieces I know large parts from memory and fill in the stuff I don’t recall as easily.  In other words, I will be memorizing the entire piece, because I no longer have the luxury to sight read it.

I love to sew.  Sewing straight lines, threading needles, lining up patterns are all work for me now. So one thing I have done with this activity is give up on “perfect” and work toward “functional and minimal errors”.  I actually threaded my sewing machine yesterday multiple times and I had an Avastin shot in my good eye just prior to working on this sewing project.  I had been told the day before I need “binocular vision” to thread a needle. Ha, I have not been binocular since 1990, and apparently after yesterday I have figured out a way to thread my sewing machine. Adaptation just takes time, and work.

Reading, I love to read. I had lost the ability to hold a book and read traditionally about 18 months ago.  Well just recently I had an epiphany, since the last several years they have been suggesting bifocals and then reminding me that they drive those of us with low vision crazy, why not get reading glasses? Those glasses are now on order and should arrive in the next two weeks. I’ll let you know how that goes, it might also help with the sight reading of music, but I don’t want to get too far ahead of myself.

               There are all these new things going on in my life, like kids starting new schools, a teenager on the cusp of learning to drive, and just “new” circumstances that can present “new” challenges.  These can only be challenged by going through the motions and working through it as it evolves.  This week I had a kid start a new school and it is their first year of middle school.  I have now driven to and from the school during carpool. I have familiarized myself with the school and some of the staff and recently even dealt effectively with an issue that arose.  What does that do, well when you go and face your fears and it all works out, peace is on the other side.  You feel confident that you can actually “do” this, you feel success and the concerns you had slip away.

This is a great article on my condition.

http://www.lowvision.org/histoplasmosis_maculopathy.htm

I found this today when looking for some more detailed answers to a post on a discussion board I am a part of. This describes pretty much my entire experience with POHS.

I already hated clothes shopping, but now it is especially loathsome

 Clothes shopping, it brings up a lot of different emotions depending on where you are in life.  I guess really, it depends a lot on your weight and how you are doing with your body image.  However, those factors today are the least of my worries.  First of all if I can find a women’s department in the store, that is success.  Then figuring out which section of the women’s department I need to be in, like not maternity.  My low vision doesn’t allow me to read the signs above the racks; I can’t read the price tag let alone the size unless I hold it up to my face.  So the old days of glancing around and finding quickly what I am looking for are just, bluntly, gone.  I wanted to find some skirts today, because really I haven’t bought more than the denim one I have had since I hit goal weight with Weight Watchers in 2009.  I found a few skirts, but they were like $40.  I was at Target; I’ll spend $40 on a skirt on the Clearance rack at Macy before spending it at Target, just saying.  Anyway, the skirt thing was a complete bust.  I did try on a few dresses and some shorts.  The thing is, when I look in the mirror, first of all I am my worst critic.  Secondly, I am not able to take in the full picture.  Imagine yourself standing in the mirror.  Now remove one whole leg, or half your torso and half your face and determine if this particular piece of clothing is flattering on you.  After removing those particular pieces add the effect of everything looking like a Salvador Dali painting and finding something decent is pretty much up there with making a picture square on the wall.  Picturing this might give you a better idea of why I find this particular task up there with having the ultrasonic cleaning at the dentist they use to remove plaque buildup.  (In case you don’t know I hate it, all of it)  The one really weird thing about clothes shopping is my inability to see feels like I stand out and am very obvious that I have issues.  Add to my already neurotic state the feeling of standing out like a freak and you have the most amazing space to be in.  Luckily, I can’t see anyone staring or making faces and honestly, they are all busy fussing about their own business to really notice anything about me. I have enormous compassion for everyone who deals with any type of disability because it takes courage to push through and do everyday tasks and to just participate in life.  You are my heroes.  Just don’t ask me to go clothes shopping. 

Sometimes, change is just miserable.

Change is inevitable, misery is optional.  Well, for me sometimes change is miserable.  Sorry I have been gone for a month, but I had family in town and then I travelled back to where I grew up. 

To travel while still working out the routines of a disability is daunting, overwhelming and exhausting.   I feel like all I ever say any more is: “I am exhausted”.  However, it is a different kind of exhausted.  It is the fatigue that comes from having to fight for every little thing that used to come with good eye sight.  I can’t read street signs, menus, marquees, price tags, and countless other things I have taken for granted until my good sight was gone.  I should reword that, it isn’t that I can’t READ them, it is that I can’t SEE them from a distance and quickly take in the information I need. 

At the airport, forget security and all the craziness of that, I can’t see gate signs in the distance, the displays on trains or shuttles, the signs that show the terminal, the names of the airlines, or the lovely monitors that tell you whether your plane is delayed, cancelled or just gone.  Now, looking at this list right now, I know that my family will get me to where I need to go (and did) and that if I was travelling alone I would go early and get help at the airport.  The key here is “the beginning stages of disability”.  You know the DISCOVERY phase. Just being in the situation and realizing all that I cannot see anymore is like being hit by a sleeper wave when you have your back to the sea.  It slams you to the ground, drags you a few yards out, and spits you back onto the beach gasping, choking, and wondering “what in the world was that?” 

I was informed that it can take 3 years to adjust to such a life change.  Okay!? I just passed the one year mark and have two to go.  I guess I am grateful I have gotten 1/3 of the way through, and that those who have gone before me are well adjusted and doing well with their circumstances.  However, there is one caveat.  My eye disease is still unstable and I could continue to experience a decline in my vision.  So, basically all the progress I make in this time could be abruptly changed and I am back at square one.  Have you ever played a game where returning to the start is frustrating, say like “Candyland”?  Where once or twice is tolerable, but upon the 20^th trip back you are thinking this game needs to live in the trash?  I think you get the idea.  Let us just suffice to say I am doing all that I can do and am trying not to be too grumpy about it. In other words, I can’t change my disability; that I am powerless over. But I can change my outlook in the midst of it, and choose not to let it make me feel so miserable.  I will celebrate the three steps forward, and breathe through the two steps back.

When life feels like a bear trap, don’t fight it will only injure you more.

There have been times in life when I have felt like I have a leg in a bear trap. You are just going along in life minding your own business and then snap, some circumstance arises and you are caught in a trap. The bear trap for me is when life throws anything my way that I do not like and do not care to endure.  It is the proverbial “life gives you lemons and you make lemonade” and I have the courage to say “hey, I have enough lemons”, thank you very much!  This is what I have learned about the bear trap.  If you are patient and you work through life’s hurdles slowly and methodically, the trap will actually spring open or at least give you enough room to escape.  However, if you thrash, live in self-pity, rant, rave, and in general fight your circumstances than the trap will tear you up pretty good.  There is good news and bad news with this whole deal. The good news is as I have done this multiple times over I have gotten better at using the tools that help me to stay in the moment and not fight.  The bad news is sometimes I am just in the mood for a fight and it is a fight I will never win.  I always come away emotionally and mentally bruised and beat up and wondering “why do I try to fight my life’s circumstances in which I have no control?”  I am getting better, but it is still a learning curve.  I guess I don’t fight quite as much as I used to. I just don’t remember how bad it can get until I am thrashing again and wondering why I am not winning and why it hurts so much.  Thus the reason for my absence from blogging, I am licking my wounds and embarrassed that yet again I chose to fight rather than pause and wait for the intense grief to pass. I really need to let myself off the hook for being human. 

Grieving just plain takes time, it won't be rushed.

I have been really battling with the current status of my eyes.  Nothing much has changed, accept maybe things continue to be irritatingly unstable and all the work it takes to “rehabilitate” is overwhelming and exhausting.  I realized this morning it feels a lot like having the first layer of all your skin peeled off. I know; gross right? (Not that I have ever experienced that personally, but I could visualize it).  Seriously, that is how it feels.  I feel raw and sensitive.  I want to be left alone and just hide out at home. I want to not FEEL this in any way shape or form.  What I have decided is that I am no longer going to try to push through the feeling and just protect myself the best I can until this whole nightmare settles down some and I can heal.  I’ll be at the grocery store and on the verge of tears for no apparent reason. This last father’s day just plain hurt, even though my father died some 16 years ago.  The skin thing, it feels like all the things that life normally throws at me just plain sting.   I don’t want to be anywhere around people because someone somewhere is going to ask that dreaded question “How are you doing?” It is innocent and genuinely compassionate but when you feel as raw as I do there is no superficial answer that I can lend that won’t be very obvious to the observer I am a flat out liar.  However, I also don’t want to burst into tears either.  I came up with this skin analogy because I keep being just “in my life” and things just affect me much more than usual, like my thick skin isn’t there.  It actually reminds me a LOT of how I felt right after my dad’s death from cancer.  I’d be at the store, minding my own business and the music over the speakers would cut through the comfortable fog I would be wandering in and hit me head-on. Then I would be standing in the produce aisle crying thinking I am completely losing it, when in fact I am simply GRIEVING  a loss.  However, now I am grieving the previous normalcy of my life. I am hurting over all I have lost with the loss of my vision and wondering when if EVER I am going to feel normal again.  I know that it will get better; I have been through grief many times over.  I just wish it would hurry up already!

I think I’d have better luck on Jeopardy than playing the game of LIFE!

I saw the RS the other day and I guess I had forgotten (convenient right?) that I was due for my 3^rd Avastin injection in the normal protocol for my condition.  All the scans and visual observations showed no fluid and no blood vessels.  Good right?  Yes and no, good there is no evidence of activity, bad because I had to have another injection.  I am starting to slide back into the person who doesn’t play well with others.  I feel like I can’t have an opinion. I am motivated by fear, the fear of reoccurrence, the doctor saying not to treat could be detrimental, and the general sense that it’s all going into the crapper tomorrow. I am tired of going to this office and feeling completely and utterly out of control.  Now, I am not talking about going off the deep end (though it is VERY appealing at times). I am talking about having a medical condition that doesn’t consistently behave itself and doesn’t give me any concrete data like, if you do a) then the result is b).  It is more like, let us do a) and the results can be any letter of the alphabet we’ll just have to run with it and hope we can overcorrect if things go the wrong direction.  I hope this makes sense, and if it doesn’t, welcome to my life!   It is such a small population of those of us with POHS that you can’t get any real solid data.  In other words, there are no concrete answers or studies that you can base your decisions on.  You are basically in the dark (figuratively and possibly literally).  I really miss the days where I would go months and sometimes years with no recurrence and when the decision was fairly black and white. You treat, you respond, life goes on until the next bleeder and it was simple, predictable, and easy.  Now I feel like a I have to jump off a cliff every 6-8 weeks and we are all hoping that the parachute opens and if it doesn’t be sure to call down to me “SORRY!”.  

One accomplishment down, and now I need to just pause.

School is done.  My kids survived.  I survived. For those of you who don’t know I had my children in an online school program this year.  I was their learning coach.  Of course, when I signed up to be their learning coach I had no idea that my vision loss was permanent and that I would face some huge obstacles doing my job.  I had to teach, correct papers, review documents and all the lovely things that this permanent loss has made very difficult if not at times impossible.  If I could get the content on the computer I was golden because I have software for magnification. However, there was a lot of trying to read quickly and understand with just a hand magnifier and it was a struggle to say the least.  Now that we are all done I am happy to report I survived and my children aren’t academically damaged.  If anything they are both very ready for the new schools next year. They have both chosen to go back to a traditional school of their choice.  They now have already done a year of “21^st century skills” and since all the schools are implementing this program now, they will be ready and proficient.  My son took two high school classes this year and did phenomenally, so he will be very ready for high school next year. It would have been nice if we could have done more supplemental field trips and days out, however, I think all and all I need to be very happy with what we did accomplish.  The bottom line was I no longer felt like my children and I were under the tyranny of an unsafe and incompetent administration or board of directors. Probably the most profound and awesome experience this year was having my kids laughing and enjoying school and life again. Never again will I “wait and see” if things get better when it is such a huge cost to my family’s safety and sanity.  When folks say “if it quacks like a duck and looks like a duck, it is a DUCK” they aren’t kidding.  So if someone looks and acts as though they have no integrity and consistently make poor choices, it will not change, REGARDLESS of all the promises and right words they say. You have to make a change and do something different.  And for my kids and me this year was a wonderful, peaceful, pleasant change and are all excited about our new adventures next fall.

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.