Monthly Archives: December 2013

BEEF SHISH & FITTING IN… AMERICAN-STYLE

Image Source: http://www.ameredia.com

As an American, I’ve known that I was different since I went to public kindergarten and was the only kid who didn’t celebrate Christmas.  Many of the residents of my hometown were of Scandinavian descent in those years, so if you look at class photos from the public school I attended through half of 3rd grade, I’m easy to spot with my dark, curly hair, light-olive skin, and ethnic features among a sea of lily-white towheads.

The kids at that school would pick on me—if not for my ethnicity then for the shape of my eyes, with their prominent lids in comparison to their slanted, lidless ones that I think were referred to as Norwegian folds.  They called me names since I was Jewish and I didn’t understand any of it. I was always a small, thin girl who liked art and books and they were so big and tall and sporty.

I remember that when I had a bad day, I would go home and look for my father.  On a day that I was teased about my eyes a lot, I recall I found my father primping in front of the mirror in the master bathroom—a testament to his vanity.  I told him about what the kids were saying to me at school.  I have my father’s eyes—right down to the unusual color—and he told me, “Actually, our eyes are very attractive,” while he continued to pick out his kinky hair.  I no longer cared about how different my eyes were after that.

However, the slurs got worse and I was sent to a private school halfway through 3rd grade.  Suddenly, there were Chinese kids and Persian kids and Jewish kids, too.  It was a Montessori school, which was a really good fit for an independent-type like me, and my father even entrusted me with the big, tuition check that I was instructed to drop off at the principal’s office.

I remember the Persian girls at my school, and there weren’t any boys for some reason.  They had come in ’79 with their families, fleeing for their lives after the coup because they had connections to the Shah.  I knew something had happened in Iran; I recall watching the blindfolded, American hostages and the huge banners of the Ayatollah on T.V. and thought Iran was the scariest country in the world, but my Persian friends were so American and they looked somewhat like my father and me.  They had different names, but they didn’t have accents and I had no idea they spoke Farsi, but they must have.  So, I never have really had a problem with Persians in the U.S., despite what people probably think due to Iran’s intolerable stance towards Israel.  In the end, this is America, and I’ve always felt more comfortable around other minorities.

After a lifetime of passing for so many ethnicities: Italian, Arab, half-black, Latina, Spanish, Greek, and yes, Persian, I found myself at my new, Persian kabob restaurant this week with the masses who don’t celebrate Christmas, as Christmas has somehow become a week-long holiday nowadays.  A party had been booked and the small, casual restaurant was packed full of Persians.  Most I have known aren’t religious, but all the women had their hair covered. They were dressed a bit more like Muslim-Arabs, but spoke Farsi.

I found this new spot a couple of weeks ago and after chatting with the owner, I learned he came to my city in the desert in the ’70s before the coup.  After I explained my food allergies, we haggled over a price for 3 orders of beef shish as they say—a shortened version of shish kabob.  It’s the only protein I get, so I’m a bit particular.  I didn’t want salad with mystery dressing, rice (mine is better), grilled onions and tomatoes, sumac, or secret sauce full of spices, all of which leaves me scratching my skin open for days due to some bizarre complication from Ehlers-Danlos syndrome.

However, when I made my way to the counter to order this time, a woman with very curly hair like mine was working, but it was naturally blonde.  She had an accent, but I wasn’t sure where she was from with her hair color and light skin.  She asked me in English if I was with the party and I said that I wasn’t.  She looked like an Israeli to me or possibly a Persian Jew since she worked at a Persian restaurant, but I had no time to ask since she was trying to charge me full price for only ordering the beef shish.  I was back to explaining my special order and haggling over the price, so I showed her my last receipt that I’d saved in the event the owner wasn’t in and then I saw him working in the kitchen and got a smile and a nod and all was settled.  I had my sclerals in since I had to drive and while I was waiting after I ordered, something amusing happened that represents my experience as a minority in America.

I was leaning against a curved, deli case at the side of the restaurant stretching out my achy back and I could see all the patrons who were gathered for this party.  Everyone had light-olive skin and dark hair, or at least the ones who didn’t cover their hair.  They had facial features that were not so different from mine and while they didn’t look like my people exactly and I didn’t see my eyes anywhere, there was a familiarity as there often is.  Yes, my sclerals work quite well at certain distances in dim lighting, even if my eyes hurt so badly I want to rip them out of the sockets.

I remembered how a former friend’s mother had once told me to become a spy because I could pass for so many ethnicities. I wondered if this huge group of people—all Muslims of Iranian descent—knew that I was different like all those kids back home did.  Was my Jewishness blinding them?  I felt at home with so many people who shared a similar look and regardless, the huge flock of Persians in Los Angeles ask each other if they’re Muslim or Jewish out of curiosity when they meet, so I wondered.  Would I pass for a Persian like I had so many times before?  Did I fit in, even if I was different?

Suddenly, an older woman with a headscarf looked at me a few times and then got up from the table and approached me.  I’m petite, but I seemed to tower over her.  She was very close to me, such a taboo in America, and spoke in Farsi.  I had a feeling she wanted to know where the bathroom was, but I don’t know any Farsi at all—only some words in Arabic. I told her apologetically, “Only English,” and she repeated a heavily accented, “English,” and we smiled and she found the woman with the blonde, curly hair and big eyes like mine and off to the bathroom she went.  I guess I should have gone with my gut and just pointed, but she quelled my curiosity: I passed.

Finally, my take-out order of beef shish was ready and the blonde woman rushed it over to me, apologizing for the wait. I asked her if she was Persian and she said that she was. She asked me if I was and I told her that I was Jewish, but people often think I’m Persian.  I said that I thought she was Israeli, but apparently not.  Then, she wished me a Merry Christmas—the two words I’ve heard non-stop the whole month—but she quickly corrected herself.  I gave her a big smile because for once, I didn’t have to do it myself.

I’ve never been much of a patriot, but the one thing I love about the States is that on the most boring of weeks for non-Christians, so many minorities can come together and find commonality.  At the end of the day, we all want to fit in one way or another in this country called America.

Advertisements
Tagged , , , , , , ,

A FALSE ALARM, BUT KEEP YOUR SEATBELTS SECURELY FASTENED

Image Source: http://www.thesun.co.uk

I don’t like to fly.  I get extreme anxiety and have had full-blown panic attacks at every elevation imaginable, even after taking a fear of flying course nearly 20 years ago.  So, when I went to see my optometrist a couple of weeks ago to find out why my vision was worse and more ghosted in my right eye, I had that fear-of-flying feeling the whole time: being completely out of control and waiting to crash and burn at any second. After all, if I’m not holding that plane up, then who is?

As usual, an assistant had me read the Snellen chart—a useless tool for assessing the visual acuity (VA) in anyone with keratoconus (KC).  I just wanted to know how much my VA had changed in my right eye.  Well, this woman didn’t want to tell me, but I do know that the VA in my left eye was unchanged because I turned around and read it on the wall when she walked out and saw 20/60 written next to the letters. I couldn’t see that while staring straight at it in the mirror. Again, the Snellen chart is worthless and there is no way I really have 20/60 vision in my formerly better eye pre-op and then formerly worse eye post-op.  I didn’t get near that line with my right eye, so I believe I lost around 4 lines of vision over a month in that eye.  I’m sure that sounds impossible, but I was progressing so quickly pre-op that it really is possible.  I had that awful feeling of sitting in a plane knowing we would be taking off very shortly.

Next, I had to have the dreaded corneal topography done, as that is the gold standard for diagnosing and tracking KC.  I looked into the machine and stared at a tiny hot air balloon that I saw multiples of with each eye while a photo was taken. My fate was sealed, just like when they close the door to the plane.

We headed back to the exam room and I waited for my doctor with my heart pounding.  What did the topography show? Was I progressing 13 months after collagen cross-linking (CXL)? Why doesn’t anyone research people who get keratoconus from Ehlers-Danlos syndrome?

My doctor came in and he knew why I was there as we had spoken on the phone, which is a rarity in the States.  He looked over a few things on the computer and then my topographies came up, but I couldn’t see them in detail.  I think he spent 20 seconds comparing them to my previous ones from this June, but it felt like 20 minutes and I could hear those huge, jet engines starting up: the clear sign of impending doom.

Finally, he spoke and said that there was no difference between my topographies.  I actually cried right there in the exam room out of relief, which is how I feel when a plane firmly touches down on the runway.  I was horribly embarrassed and it only lasted 5 seconds and I wiped my eyes and apologized. But, what was wrong with my eye?

My doctor checked my eyes and looked to see if the slight scar I have in the right eye was worse, but it wasn’t.  Another thing that can initially cause ghosted vision is a cataract, which may be a side-effect of CXL due to the UV light, but my lens was clear.  He thought everything else looked normal in both eyes, aside from the scar partially blocking my vision in my left eye from CXL.

He decided to do a refraction and apparently my prescription has totally changed since I saw him a few months ago, but not for the worse.  I’m still confused on what that means exactly, but that is precisely what he told me and I wish I had gotten copies of my refractions, but you have to pay for records.  I can still drive with my scleral contact lenses, but either due to the sun or the lights at night it’s really hard.  As I rarely wear them due to the pain, I noticed that my vision had gotten worse without my lenses in, which is the bulk of the time.

I told my doctor again my concerns about CXL lasting due to Ehlers-Danlos.  He told me that he had no idea about that or what was wrong and that I had surgery that totally effed up my eyes—that would be both eyes due to the prescription change and yes, I cleaned up his language.  What did he mean by “effed up my eyes?”  I believe he was referring to the fact that my corneas are changed at the molecular level, not truly effed up, but maybe a casual relationship with a doctor isn’t as great as I thought.  He said that maybe my left eye had gotten better, but I’d been doing the cover-one-eye-and-then-the-other test for weeks and just looked at him like he was yet another inept doctor in this city.  The free fall was starting.

I can’t even read on my hugely blown-up laptop with my right eye, so that is the one that is worse.  That was my better eye 6 weeks ago and I was also right eye dominant due to that, so my visual acuity was based on that eye which used to read the 20/40 line with great difficulty, but previously read 20/100 pre-CXL.  I am now left eye dominant as my brain is trying to compensate for the vision loss in my right eye.  Do I need to have fancy initials after my name to figure that out?

Again, the Snellen-based VA means nothing with KC as you can get a driver’s license with 20/40 vision and I flunked the test almost 2 years ago when the KC was starting in my left eye and I could read 20/30 from that eye without correction. I got a license as I could get enough correction with glasses in my better eye to read it back then, but I have a huge restriction stating that I am blind in my right eye, which was at 20/60 at that time: my current VA.  Legally blind is defined as 20/200 in the States; I rest my case on the idiotic Snellen chart.

So, my optometrist doesn’t know what is wrong or if the CXL will continue to halt the progression of keratoconus.  Oh, he called it keratoconus three times so I’m going back to that. A Google search for “secondary corneal ectasia from Ehlers-Danlos syndrome” yields zero results, unless my posts come up, so keratoconus it is.  Many disorders are associated with KC and until the medical world catches up and comes up with new names, I’m staying in the KC club. My topographies give a diagnosis of keratoconus and the big specialist who did my CXL had no clue I had Ehlers-Danlos syndrome, although I did mention the fact that I thought I might have it and he told me to see a geneticist.  If the only real difference is the typical age of onset and the lack of disease burn-out, I’m sticking with keratoconus and not changing my tag line.

What is wrong with my eyes again?  My vision is a bit better today so I wrote this post.  Who effing knows?  The plane crashed and there are no survivors.  I’ll post an update when they recover the black boxes.

Where all the answers are.

Tagged , , , , , , ,