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.