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Stories From the Edge of Blindness

In 2002, Retinitis Pigmentosa changed my life. This is my story of a slow approach to darkness.

Category

Vision Loss

Best Eye Appointment Ever

The title of this post may be a tad misleading.  The best eye appointment would either be Dr. Sarraf telling me it has all been a dream and I don’t actually have RP, or Dr. Sarraf giving me a pill that would cure the RP and completely restore my sight.  Given the fact that those two things are pretty unlikely……it was definitely the best eye appointment ever.

The first best part was that the whole appointment was (almost) like clockwork.  I was only there for 3 hours, which  is actually a reasonable amount of time given my past appointment times.  I wish I could say that it was also pain free, but from the minute the tech was administering the drops, it hurt like hell.  The first pain comes when she asks me to look up at the ceiling, directly into the huge fluorescent lighting fixture, without blinking, so she can put three sets of drops in my eyes.  3 seconds looking into a light like that is excruciating; hell, just being in a fluorescent lighted room is painful.  It may not sound all that great so far, but, I was called into see the tech only about an hour after my arrival, and after the drops took effect, ushered pretty quickly into the imaging room to get scans and photos taken.

After another short wait, I was called in by the intern, who is lovely and was there last year as well.  We chatted a bit about eye stuff, and then he examined my eyes with a light so bright, it felt like a layer of the inside of my eye was being burned. OUCH.  Then, he asked if a student from France could have a look.  With a smile, I agreed.  I wouldn’t want to deprive someone of a learning opportunity.  But, the students always look longer, make the light brighter and get so close that the casing around the light sometimes touches my face,  as if that will give them a better look.  It’s like the part of my eye that was burned is now being scraped with a hot blade.  I am pretty tough, but I actually pulled away from her at one point because it hurt so much.  I am making her sound like a sadist, but she was actually very nice.  After the student had her lengthy peek at my retinas, the intern brought up ERG and suggested I may need to have another one.  So soon?  I felt like I was in the ERG torture chamber like a week ago.  That shit is traumatizing.  I told the intern, in a joking way, that the ERG’s seriously suck.  He laughed, agreed, explained the importance, apologized, and said he would talk to Dr. Sarraf.  Then it was back to the waiting room to wait for the final exam with Dr. Sarraf.

This may not be sounding like such a great appointment, but I promise, it really was the best appointment ever.

So, I wait a bit longer, get called back into the room, and listen to Dr. Sarraf talking to some other patients for about half and hour.  I am not always an eves dropper, but remember, I can’t use my eyes, so listening to other people’s private conversations is about my only option while I wait.  After not too long, Dr.  Sarraf comes in and is polite and positive, as always.  Then he examines my eyes.  FUCKING OUCH!!!!  He actually dimmed his light a bit (I really should find out the proper name for those lights they carry around) after the first eye; I think he could tell I was in pain.

So he finishes the exam and talks about the decrease in my vision between 2012 and 2016 and says he wants me to have a visual field test in six months to see if my field has constricted further since 2016 ( it most likely has).  He tells me that the RP has still not started to affect my central vision, and that it may never, which is amazing news.  Then he says I don’t have to have an ERG, which is smashing news…..and the really good bit, the part that makes it the best appointment ever.  He referred me for genetic testing!

Last year, he said he really didn’t see any value in my having genetic testing, but a lot can change with science in a year.  Apparently there is a treatment that is being administered to children with RP and it is having some great results, and although there is no treatment for someone like me yet, he said there is a lot coming down the pipeline and he thinks the genetic testing would be of great value at this point.  I was over the moon.  This is why I go through the pain every year, why I make sure I remain his patient.

I am super excited, not because I think there will be a treatment for me tomorrow or even in a year, but because having the genetic testing puts me on the radar.  Hopefully, I will also be able to learn a lot more about my specific strain of RP and what it looks like from a genetic standpoint.  I just kept telling Dr. Sarraf how exciting it all was and how cool the work with the kids was and how I was completely thrilled; I may have come across a bit nuts, but hopefully I was memorable!!!!

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An Unpopular View

I was going to work on my newest venture of writing fiction (thanks to my wonderful friend and mentor, Bryan) and send out some poetry submissions this morning, but then I entered the WP world and read a few different posts, from others in the Blind/VI community, about the  #Birdbox challenge, and I felt compelled to respond with a post of my own.

I must begin by saying that I haven’t seen The Birdbox or any of the videos of the #Birdbox challenge, so you may read this post and say to yourself,” jesus Susan, do some fucking research before you actually write a post”….but what can I say, I am a risk taker and honestly, willing to rattle some feathers on this specific topic.  That said…..

My understanding is that The Birdbox is about a woman and two children who are forced to remain blindfolded to stave off the attacks of monsters and ultimately stay alive.  The challenge, as I have read, is something along the lines of putting on a blindfold and attempting to do anything from basic tasks to potentially dangerous undertakings.  This all seems pretty foolish to me, but doesn’t strike me as having anything to do with being blind, or trying to understand what it’s like to be blind.  It sounds like a gimmick that was derived from a movie made purely to entertain (if that’s your thing).  Please don’t hesitate to correct me on any of this, if I have missed the mark.

I feel it is important for me to say that I am not a spokesperson for the blind community; I am just a blind woman with some, most likely, unpopular opinions.  I find that my views often seem to be in opposition to many of those that I read from other blind and visually impaired people.  I understand the importance of education and debunking stereotypes, especially regarding the idea that blind people are helpless, but you won’t hear me joining in the outcry against blindness as something to fear.  Blindness scares the crap out of me.  This is just my truth, but it has been so since the day I was told I was going blind.  Before my RP diagnosis, I was actually less afraid because blindness wasn’t something that had even come close to touching my life.  When it did, you better believe I was scared.  I still am.  But I am not helpless and I am not weak.

In regard to the blindfold challenges (this bird box thing is not the first) and the question of these challenges perpetuating the stereotypes of the helplessness and fear of blind people, I think hearing about the experiences of the sighted people who participate in the challenges is just as important as hearing the opinions of those of us who are blind/visually impaired.  Talking specifically about the Birdbox challenge, I wonder if the sighted participants actually think being blindfolded and being blind are the same thing?  Maybe we aren’t giving them enough credit.

As far as exercises of blindfolding sighted people to give them a small idea of how challenging it can feel to be blind, I won’t be one of those rallying against it.  For those of you who have read my blog for a while, you may remember a few posts I wrote about being blindfolded for some of my O&M lessons, as an aid to learn how to better use Zelda (my white cane).  If O&M instructors are using blindfolding as a tool for teaching blind and visually impaired people, the use of blindfolds to educate sighted people doesn’t seem like something unequivocally damaging to me.

Will being blindfolded give a sighted person the exact experience of being blind?  Of course not.  Is it a terrible thing to give a sighted person an idea of how scary it can be to be blind or visually impaired?  I don’t think so.

My first experience of one of these blindfold challenges was through a video posted by an English poet named Dave Steele, who has RP.  His wife was blindfolded and walked a block with his guide dog, Christopher.  When she removed the blindfold, she was crying and said that for the first time, she felt like she had at least a small idea of how hard it must be for her husband, how challenging it must be to adapt to his ever-changing vision, to blindness,  and how hard it must be to learn how to depend on aids like a cane or a guide dog.  My take was that the feelings she felt from the blindfold exercise were the kind she couldn’t get from reading about his experiences, and this is a man who writes almost exclusively about RP.

Perhaps my view of these challenges isn’t negative because it was built from a positive foundation, from the reaction of a sighted person, rather than the opinion of a blind/VI person.  Perhaps I am totally full of shit and about to piss off the entire blind community.  I hope not, but I feel it is important to offer varying opinions.  I welcome comments of any kind on this post.  I just want to keep learning and understanding.  I Just want the conversation to stay vital and alive.

 

 

Frail

I was determined to become more disciplined, more succinct in keeping my blog alive.  I was going to post twice a week. I have a number of blog posts in the making. But I forgot about the ways that life creeps up and grabs me by the throat, dashing whatever lofty plans I may have conjured up.  I have imagined myself as so many things, believed myself to be so much more than I am.  I have accepted illusion over reality, climbed into the sounds of myself breaking and shattering, as if these were acts of bravery.  I convinced myself it was strength, believed that I was strong, but my reflection shows a woman who is frail and swallowed up by shadows.  Time and again I am a disappointment to myself.
Continue reading “Frail”

The Consequences of Blindness

I read a post this morning from Sightless Musings, that hit me at my core. Please read it.

I was going to write about writing today, about feeling completely inarticulate, but after reading the above mentioned post, I changed course a bit. I am still feeling like a complete bumbler in regard to my writing, but I press on and tell this story (if you can call it that) anyway.  Continue reading “The Consequences of Blindness”

Rust + Moth

I can’t deny it.  The day I got this particular acceptance, I cried.  I had submitted to Rust + Moth so many times and when the email came in that they had accepted my poem, I was in disbelief.  I still am.  Rust + Moth, in my opinion, is publishing some of the best contemporary poetry online and in print, and to have my work sit alongside that of so many writers I admire, is an absolute honor. The Autumn issue is incredible, full of poems that have left me breathless and in tears.   If you would like to, you can read my poem, here.

Everyone Falls

Everyone falls.  Everyone daydreams and falls into states of preoccupation, falls into the arms of another person, falls to the ground.  Can you remember the last time you fell to the ground?  I know it happens, but how often?  Is it a story you tell about that one time you fell and were so fucking embarrassed?  Or maybe you cried?  Did you hurt yourself?  Were you drunk?  There is no judgement here. I have fallen and been embarrassed and cried and hurt myself, and yes, I have been falling down drunk. But, the falls that shake me the most, are the falls that can only be blamed on RP.  Continue reading “Everyone Falls”

Burning House

I am thrilled to have 3 of my poems in Burning House Press today!!!!! My huge thanks to June editor, James Pate! If you want, you can read them here.

 

Unwavering

I never wrote love poems, not about the good parts of love anyway, until I met my husband, Joe.  Perhaps I had never really been in love before him, or perhaps I didn’t know what real love was supposed to feel like and look like.  What I do know, is that my life and my heart have not been the same since I first met him, almost 10 years ago.

This month is his birthday month, my personal favorite month of the year because it is about celebrating him, so it is perfect that today my poem, “Unwavering” came out in Foxglove Journal.

Epic Summer Issue of Sheila – Na – Gig

I am thrilled to have 2 of my poems in the Epic Summer Issue of Sheila -Na – Gig.  My huge thanks go out to Editor Hayley Haugen!

This is a huge an amazing issue with so many wonderful poets and poems.  There are also a ton of submission opportunities at SNG that all poets should check out!!!!

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