Blind-ish

During high school I thought my destiny was to be a psychologist. I took an AP Psych class that was filled with opportunities for introspection. We took a lot of fun self-analysis tests…One in particular focused on if we were type A or B personality. I was a classic Type B. I retook the test as a psych major in college and just now for fun. On a scale of 35 (type B) to 385 (type A) I scored a 305. My first instinct? To research the validity of the test I just took and then how common it is to switch from one type to another, what it means for my life, job and family, etc. A total type A reaction. The test is valid.

Becoming type A (or OCD, control freak, micromanager, or… fill in the stereotype) presents an interesting challenge for me as a person with a progressive eye disease. According to doctors 20 years ago I should be totally blind by now. If you look at the studies today they say there is no way to predict the progression of vision loss. When reading the latest research there is hope that I may never be totally blind or better yet, that my vision loss might be reversed.

What is a control freak to do with an unclear prognosis? Welcome to my secret fixation of the last few months.

I feel most comfortable when I can anticipate and plan. As a blind-ish person I don’t know if there is any other way to be. I mean, how else can you ensure that you don’t run out of tampons?!

So, my type A mind wants to know the plan. So much so that I’ve ended up down a very strange train of thought. You ready for it? “I wish it would just hurry up and happen already.”

My first, very visceral counter-thought to that is that of course I don’t want to be totally blind. Sorry if this offends anyone who is… but I would absolutely, 100% choose a life in which I had full vision. However, that is not the life that I have and I’m good with that.

Being blind-ish and sort of sighted is a weird limbo to be in. I have a guide dog that I sometimes need and sometimes don’t. I can read, except when I can’t. I can see a smile, but not the expression in someones eyes at the same time. I can’t drive, but I can see the road. I crave light so that I can see but am in pain if the light is too bright. I look “normal” (I hate that word) but the disease in my eyes is anything but normal. I advocate for and identify as a person with disabilities but sometimes wonder if I’m really one of them in the way people who have progressed worse than I am are.

I don’t want to miss one single thing that God has in store for me to see but I also don’t feel comfortable in flux.

I just read a book written by a woman with Usher syndrome that I was lucky enough to meet several years ago. Her mantra is “breathe in peace, breathe out fear”. At the heart of wanting to hurry up the end result is the desire to control the fear. To plan for the unknown. I mean, how bizarre is it to want to hurry up blindness?! Obviously I don’t want that. I know God and genes and disease process and environmental factors control the end game. I just want a say-so. I want to be in control of what is in store for my body and my life.

Usually I wait to write a blog post until I’ve already learned a lesson or achieved a new level of self-awareness. Not this time. Today I’m just putting my crazy out there and hoping you guys can appreciate it 🙂

If I wasn’t blind…

In the last 20 years I’ve given a lot of thought to what life would be like if I hadn’t been born with retinitis pigmentosa.  I once shared this train of thought with a well-meaning friend who said “I think you would be meek”.  I was surprised by her conclusion and quite frankly, I was offended.  I was in my early twenties at the time and hadn’t yet embraced the defining role that my disability played in shaping my life but I certainly thought that my destiny was not simply a result of RP.  

But what if it had never happened.

In order to begin to dissect the impact of blindness on me, I have to go back to the truly defining moments in life when blindness mattered.  

The first would be PE classes.  Wow, those sucked.  I remember being hit in the face during a dodgeball game in 5th grade.  The PE teacher told me to walk it off.  Instead, I cried it off.  Meek, right?  After that, I pretty much gave up on gym and embraced being that awkward kid that never dressed out and instead walked the track with the other slightly odd kids.  

Those walks around the track are where I met my friend Kate.  She and I bonded over miles of asphalt during my freshman year and in the 15 years since, Kate has taught me through example how to overcome life’s hurdles while keeping God at the center of life.  

If I hadn’t been going blind I probably wouldn’t have been a cutter.  Cutting defined most of my teenage years.  It was painful and fulfilling and sad and exhilarating all at the same time.  If I hadn’t been a cutter I wouldn’t have learned that finding a way to embrace the things I can control can make the things I can’t control a little less scary.  I am in no way advocating cutting.  Learning how to stop cutting was extremely challenging and taught me how to focus on healthy ways to gain control while part of my body was being assaulted by disease.  It was a great lesson but there are many other ways to learn it.

My self-harm habits were extremely unfair to my family and friends.  Through the discovery and overcoming of that I found out that the family I was born with had unconditional love for me.  I also realized that I was not alone.  Many of my friends at the time secretly shared the same addiction but for very different reasons.  I won’t name them and we aren’t all very close anymore but they made being different more normal.  A few of my friends figured out what I was hiding.  I scared them.  I hurt them.  I fought them tooth and nail to try and make them keep my secrets… to try and make them understand.  I forced them to deal with very adult problems at a very young age.  Sometimes I have nightmares about that time in my life.  When I see Rachel and Shannon and their families I’m keeping another secret.  I’m secretly thanking God that they didn’t keep quiet.  That they didn’t enable me.  It is because of their strength that I’m here and stronger.  They know what it took for me to move past that time in my life.  That is not meek.

As I transitioned into being an adult, more and more of my decisions where influenced by my disability.  I chose a college nearby because I couldn’t drive.  I chose a job where my mom worked because I couldn’t drive.  I got a guide dog because I was blind.  I picked apartments near jobs because I was blind.  

If I had gone away (and stayed away) from Jacksonville I wouldn’t have… ok, that’s a very long and blessing-filled decade with more people and experiences that have contributed to the strong woman I am today.

I think you get the point.

I’ve written posts before about the blessing blindness has been to me and I will certainly write more so I’m going to try not to turn this into that kind of post.  The point of this rambling reflection is to try to understand a life in which I wasn’t facing darkness. To try and imagine myself as meek.

I was raised by 3 strong parents and many more “adoptive” parents who lifted me up and had high standards for me.  That didn’t have anything to do with being blind.  I did well in school but could have done better if I hadn’t been distracted by laziness and partying.  That has nothing to do with blindness.  I’m opinionated, caring, fierce, direct, and empathetic.  Each of those qualities comes out when dealing with my disability and the life of advocacy I have chosen, but none of those things would be less entrenched in my personality if I didn’t have RP.

Or would they?

The reactions, situations, individuals and opportunities that having RP has elicited from me and exposed me to absolutely give me strength and a mission in life.  I’m not sure I’ll ever know what kind of person I would be if I wasn’t going blind.  I’m going to try harder to not care.