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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.

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RP

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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Once a Year

Tomorrow is my annual appointment with the retinal specialist.  I used to suffer from at least a week of anxiety and fear leading up to the appointment, but I have been through it so many times, I now start getting anxious about it just the day before.  I suppose I am lucky that I only have to go once a year, given that there is no treatment for my disease(that isn’t so lucky), but the day is always long, painful and exhausting.

The doctor who diagnosed my condition was less than pleasant (you can read about him in my poem, Diagnosis), but the doctor who took on his patients when he left UCLA, and who has been my specialist for the past 16 years, is absolutely wonderful!  Although it is never fun to have my eyes poked and assaulted by lights, his kindness always makes it a bit less harrowing.

If I don’t have to have an ERG, which I thankfully have only had to have twice (you can read about my most recent experience here) the day is usually pretty much the same every year.  I check into the clinic and wait about 20 minutes or so, then I get called in for the first phase of the appointment.  This is pretty standard, I think, for most ophthalmology visits, regardless of your condition, and my doctor and his partner are specialists and researchers of a number of degenerative retinal diseases, not just RP.  Anyway, I get called in and a tech checks my glasses and determines what I can see while wearing my glasses, then does a rudimentary peripheral vision test, consisting of asking when I can see her (it has always been a woman) two fingers as she brings them in from all of the outer edges of what should be my visual field.  It is after this test that I get my first, “oh fuck” feeling of the day.  It is the first big indicator of why I am there, which leads to feelings of self-pity and thoughts like, “I really don’t want to have this crazy disease”.  I try not to feel self pity, and most of the time I don’t, but you gotta cut me a little slack on the actual day at the eye clinic.  The last two things in this phase are asking if my vision has changed, to which I always reply either maybe or I don’t know, and then come the drops.  Lots of drops.  Drops to numb my eyes and at least two sets to dilate my eyes and sometimes contrast drops.  Then I am asked to return to the waiting room.

For most people, having their eyes dilated is a bit unpleasant, perhaps results in a couple of hours of increased sensitivity to the light, maybe they have to wear sunglasses when they normally wouldn’t, but it doesn’t put their eyes out of commission for the whole day.  At my stage of RP, having my eyes dilated is incredibly painful and leaves my eyes completely useless for the entire day.  After my initial diagnosis, my eyes stayed dilated for almost an entire week, but that is another story.  On a normal day, my sensitivity to light is so extreme, that if I don’t wear sunglasses, I experience what most people feel after having their eyes dilated.  When I get the dilation drops, it is so painful that I can’t look at anything without tears coming to my eyes, even through the darkest lenses.  So, not fun.

Anyway, back in the waiting room, drops doing their evil job, I wait. And wait.  And wait, to see the doctor.  At the least I have waited an  hour, at the most it has been 3.  These are hours when I can’t read or check my phone or look at anything.  So, I listen. My doctor is lovely and very gentle with his patients, many of whom are elderly and have age related macular degeneration, and who also require him to speak a bit louder than normal.  I listen to how patient and caring he is, how willing he is to explain things slowly and multiple times.  I listen to people in the waiting room, of all ages and genders and races, some frustrated, some frightened.  I listen to parents comforting children and patients telling loved ones about how hard it is living with blindness.  I listen to receptionists placating difficult personalities.  I listen for my name to be called.

I am ushered into a dim room; at least it is usually dim. Last year, I had to ask to have the lights dimmed, and I won’t deny feeling a bit pissed off.  Shouldn’t they know how painful the light is for people like me? Don’t they deal with this every day?  I got over it pretty quickly.  When I finally get into the exam room, I usually wait at least another 30 minutes for the student to come in.  There is always a student; UCLA is a teaching hospital.  The student does the first of the in-depth exams of the day, which consists of the brightest light I have ever seen, being shined directly into one eye at a time, while I am asked to look right, left, up and down.  The student will usually tell me a bit about RP and that I also have cataracts etc.  I know all of this, but they are learning, so I just smile and say thank you.  Then the student leaves and tells me Dr.  Sarraf will be with me soon.  It is never soon.  It may be up to another hour before he gets to me.  He is a busy guy.

When he finally arrives, Dr. Sarraf does another extensive examination of my retinas.  He always says he is sorry, that he knows it hurts.  Some years he tells me there is no change, others he tells me there is a slight change.  RP moves slowly and in my case very slowly, which is a good thing.  Then he tells me there are just a few more tests I need to have and says he will see me in a year.

Then it’s back to the waiting room.  And I wait.  And wait.  In more pain that before my last stint in the waiting room.  Still unable to look at anything.  I may wait another hour or more for the tests, which I will write about (along with the results) on Tuesday, when the pain will hopefully have subsided.

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”

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”

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.

Perspective on Suffering

I approach the idea of suffering from 2 angles.  One is from the knowledge that there is always someone who is suffering more than me, suffering atrocities that I cannot even begin to imagine.  The other, is that as individuals, our own suffering is indeed the worst in the world. We walk in our own skins, live in our own minds. Ever since my RP diagnosis, 16 years ago, I have had people comment that they shouldn’t complain to me about their own suffering, given that mine must be so much worse.  I have also had people tell me that RP isn’t so bad, that it isn’t going to kill me and there are people who have it much worse than I do.  I believe we are all human, we all have value in our pain and in our joy and in our expression.  Our plights are our own, but hopefully by sharing our experiences with each other, we learn and find spaces of healing and understanding.  Or is this all bullshit?
Continue reading “Perspective on Suffering”

Eating Barbequed Iguana

I fell a few weeks ago, on the sidewalk, while gawking at another new group of hideous town houses that are being built in our neighborhood.  When I fell, I cried, not because it hurt, but because I felt humiliated, broken, slapped in the face yet again by RP.  My depression and self loathing voices took center stage and told me I was useless and really shouldn’t even be outside if I can’t manage to walk a block without falling down and scraping my knees.  I wanted to hide, from the RP and the day and the world.  I wanted to hide from myself, pretend I was graceful, dream I could float.  My sadness turned to anger and I stumbled home, terrified that every step may be the one to send me back into the unwelcome embrace of the pavement. Until very recently, this had been my usual response to falling.
Continue reading “Eating Barbequed Iguana”

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