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.