Tag Archives: eye disease

18 MONTHS AFTER CXL & THE MONKEYS SCRATCHING THEIR HEADS

 

buddha-weekly-0monkey-mind-is-a-term-for-the-anxious-mind-horizontal
Image Source: http://www.buddhaweekly.com

A decade or so before my keratoconus showed up, I recall seeing my former internist back home when I became so horrible ill from what I now know was classical Ehlers-Danlos syndrome.  I had lost 30 lbs and was well below 100 due to throwing up from the pain all day and had this gaunt face with dark under eye circles when my doctor walked into the exam room and said to the half-dead person in front of him, “What happened to you?” in a very concerned tone.  My internist was a smart and good doctor, but he was scratching his head like a monkey over what could possibly have made a fit and healthy young woman turn into a zombie seemingly overnight.  In the end, he ordered blood work and sent me a copy with a referral to a rheumatologist.  My doctor hand wrote the following on my report: You look good on paper.

I happened to have my annual eye exam this week and it’s been about 18 months since I had bilateral collagen cross-linking (CXL) to hopefully halt the progression of my keratoconus (KC), as well.  The majority of the side effects from CXL have not gone away, and I still have the odd, right eye that originally got 6 lines of visual acuity (VA) back and then started to lose vision last October.  I was sure the KC was back and had seen my optometrist to figure out what was going on, but my topographies were unchanged, which left him scratching his head like a monkey and then swearing, which was a first.  That exciting appointment is detailed in this post.

The vision in my right eye has become even more ghosted recently and the prescription in my right scleral lens that I need to wear to drive is not correcting the ghosting anymore, so I figured I’d have my ophthalmologist redo my topographies to hopefully shed some light on the problem. After all, two heads are better than one and both my optometrist and ophthalmologist are well-versed in keratoconus and Ehlers-Danlos.  For those who know my KC ordeal, this is my dry eye specialist who I actually like as I fired the inept corneal specialist 6 months ago. Good riddance.

Once again, I found out that there is no progression of the keratoconus in either eye, although the cone on my left cornea was blasted off during CXL for some odd reason and my scan still shows no keratoconus, although the resulting scar, or corneal opacity, has resulted in keratoconic vision in that eye that can’t be fully corrected.  My doctor checked the opacity for progression and it’s the same, but he said that I had something almost like an iron line in that cornea.  I’m not sure if that is a Fleischer ring as that eye technically doesn’t have KC anymore and he said “line” and not “ring,” but I didn’t think to ask at the time and he sounded a little stumped by it.

Also, the tech had me read the Snellen chart with my lenses in—or with correction—but then forgot to have me reread it with my lenses out.  Therefore, I have no idea what my actual VA really is, but with great difficulty, I could read 20/30 in each eye and a poor 20/25 with both eyes with correction. Mind you, I can barely wear my sclerals due to severely dry eyes, so I live in ghost-y land the rest of the time.  In the right lighting, I’d maybe believe I’m a weird 20/30 with my sclerals, but my near vision is still terrible and if any bright light is around, I tend to get the whiteout effect, holes in my vision, pain, and all sorts of bizarre things.  When I got my final pair of scleral lenses in September from my optometrist, my corrected VA was 20/20 in my right eye and 20/30 in my left due to the opacity, so I have lost a line in the former eye with correction and much more without.

Therein lies the problem.  Per my topographies over the last 18 months, the severity of KC in my right eye dropped from 76% to 32%.  My K-readings, which measure the curvature of the corneas at various spots, have gone down from 51 diopters to 48 diopters at the steepest area, and if you look at my colorful topographies, the pink area (very bad) is now gone and the red area (bad) is extremely small.  It’s improved since this time last year, in fact.  Now, my CXL surgeon told me, “If you get improvement after cross-linking, you’ll continue to improve for the rest of your life.”  Per my scans, it sure seems that is the case and that I’m the poster child of CXL, yet my vision in the keratoconic eye is getting worse—and it’s in terms of ghosting, which should mean an increase, not a decrease, in my irregular astigmatism: the hallmark of keratoconus.

My ophthalmologist was clearly mulling over this and throwing out theories.  He wondered if the Ehlers-Danlos was causing changes to the shape of my eye’s lens, which would definitely create wonky vision, but I don’t think he had a test for that. And so in the end when the exam was complete, I got the monkey scratching his head while telling me, “Your eyes really do look good,” which brought back that old memory of the note from my former internist about looking good on paper.

If it took me a decade to figure out Ehlers-Danlos syndrome was what had turned me into the walking dead, should I pay more attention to this oddity with my eye that looks good—minus the keratoconus, etc., etc.—as well?

At this point, I feel like a monkey scratching my head, too.

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SCLERAL CONTACT LENSES: THE FINAL CHAPTER

 

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mage Source: http://www.wilcoxeye.com

Oh, the irony of it all: a contact lens intolerant person who can only see by way of scleral contact lenses.  Well, we tried.

Last week, I returned to my optometrist/lens fitter after trying out my second pair of sclerals.  Vision-wise, the first pair seemed pretty good for someone who really can’t see well, but a couple things were off: I still couldn’t see close-up at all, the TV created some weird, double vision—compared to my normal, ghosted vision—and night driving was still a ghosted mess when I looked at anything illuminated.  I should add that sclerals do help with my light sensitivity, but I still can’t drive into the sun, which is rather hard to avoid unless you can consistently drive north and south and never turn.

Due to the aforementioned issues, my optometrist changed my prescription as he felt my first pair was too strong, and hoped that would help with the near vision and the TV issue. Well, something was very odd about that second pair and I’m blaming the lab, as my doctor is really good.  They seemed okay in the office, but I went to a big box store afterwards—the best place to test out your vision—and I was back in the graveyard, also known as the ghosted mess.  I couldn’t see people’s faces again and everything in the store was in multiples, and not because it was a promotion.

Then, I got very worried as I had doctor appointments I had to drive to the next week and couldn’t see, even though I drove with no contacts for 8 odd months; well, it’s not like I had a choice.  Back to the optometrist I went the following week and he was utterly confused.  We tried all the lenses in front of my eyes with the new sclerals in and nothing was making sense, hence my belief that the lab screwed up.  My doctor gave me my old pair back and told me to really compare them—and to not get them mixed up—and report back.  Well, I already knew that pair 2 was awful, but I was happy to get the old ones back.

Of course, I decided to play doctor in my room here at the motel.  Why not mix the pairs up, try different contacts in different eyes, and so forth?  Well, that’s just what I did, but I had to have charts to make sure I didn’t forget which lens was from which pair.  I also made notes, complete with diagrams of eyeballs as to not confuse things, to figure out the difference between each lens.

I realized a couple things: the left lens of pair 2 was total garbage.  While that is my worse eye due to another corneal opacity that my dumb, corneal specialist failed to diagnose and treat, I had horrible ghosting with that lens in, but not the left lens from pair 1.  So, I crossed that one off the list and put the left lens from pair 1 in.  Oh, I did try that lens in my right eye, but had no idea the sphere was different so don’t try that one at home.

Now, I had to figure out what to do about the right eye.  That lens from pair 2 seemed too strong, when it was actually weaker, and gave me headaches.  Nonetheless, I stuck that in my right eye, and mind you, these are plastic bowls filled with various solutions that are extremely difficult to insert as you have to be parallel with the floor, so I think I was at hour 3 at this point.  Well, lo and behold, the right lens from pair 2 didn’t give me an instant headache with the left lens from pair 1 in. As this is very confusing—you should have heard the conversation with my doctor—I’ll simple state that my right eye had the new prescription and my left eye had the old prescription.  Would I see better, worse, or the same?

I looked at the computer and the font was so crisp and black, but I still needed it blown-up, probably due to my convergence insufficiency.  The TV seemed crystal clear and the room looked okay with no ghosting.  Then, I went to the window and I could see very far and was able to read the signs across the street with ease, see clear images of the parked cars, and the leaves on a big tree were in detail.  I just had to wait to test out the mixed-pair of sclerals in a big box store and drive at night to be sure.

I did have to do errands within the next few days but got a ride due to the sun.  I noticed that in the big store, things were at about 90%, when they were at 100% before distance-wise.  I could see faces in detail, but not as well and not from a very far distance, and if I looked towards the end of an aisle, things were blurry and mildly ghosted.  It wasn’t bad, but the first pair was better for distance hands down. Everything else seemed fine and I didn’t see multiples of things on shelves.  I also could read the print on various items as long as it wasn’t too small.

Soon enough it got dark, and even though I wasn’t driving, my vision conked out again.  The illuminated street signs were very ghosted, as was anything else that was lit up.  I saw halos and had glare from the street lights and headlights of oncoming cars, but I figured this was due to my corneal opacities that cause images to further scatter.

I decided that mildly worse far vision in exchange for better near vision and normal, TV vision was a fair trade.  That would be the end of this story, except for that part about being contact lens intolerant.  I have severely dry eyes due to numerous conditions and someone like me can’t wear contact lenses for more than 10 minutes, or really at all.  The dryness is so painful that it can only be understood by sticking your eyes in front of a hairdryer non-stop.  I’ve tried every artificial tear, and due to the contacts, they can’t be too viscous or they muck up the lenses.  When I don’t wear the sclerals, I have lubricating ointment made of petroleum jelly and mineral oil in my eyes 24/7—what to do?

After seeing my doctor last week who agreed this was the best pair—fancy that—and that he couldn’t make my vision any better, as well as pointing out that irritating irony that I can only see with my sclerals, but am contact lens intolerant, he said he would research anything I could possibly use so that I can wear my sclerals every day and without issues.  I really do appreciate a doctor in this city who will research anything, but I’m not holding out hope.

So, presuming my optometrist won’t be able to find the miracle cure as no one else has, I’m still left in the keratoconus ghost yard, aside from the 2 days or so that I’m forced to leave and wear my sclerals while pouring vials of artificial tears into my eyes every 10 minutes and swearing I’m going to rip my eyeballs out.

And to think I had a chance of seeing again…

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GETTING AN ACT IN THE FREAK SHOW

Image Source: http://www.medical-dictionary.thefreedictionary.com

Why does Ehlers-Danlos syndrome (EDS) have to be a freak show disease?  My skin doesn’t stretch enough to be the India Rubber Woman and I’m not hypermobile enough to be the Human Pretzel, but I look like a hybrid of marbled, blue cheese and the Purple People Eater from the venous pattern and purpura and petechiae covering my body from nearly head to toe.  The icing on the cake is the beyond frustrating keratoconus, which turned my corneas into little cones. Alas, the latest problems that have been discovered could surely guarantee me an act in the freak show.

Possible employment? http://www.plasticjoe.com

 

I’ve been working with my great, new optometrist over the past couple of months to try and get scleral contact lenses, which can correct keratoconic vision to a point by creating artificial corneas in essence.  As I’m post-CXL surgery, the progression of my keratoconus (KC) has been halted and my vision is stable, not that it means I can see well.  The trial pair of scleral lenses had about 3 pluses and a lot of minuses, which I typed up in a list with bullet points for my doctor.  He thought that was very amusing, but in a good way, and it actually helped to narrow down why I was having so many issues with the sclerals, aside from my dry eyes which will prevent me from wearing them daily it seems.

My doctor got down to business getting the prescription just right as it was a hair off and he can get my far vision a little clearer, although that is where things are very good for me with sclerals.  I mentioned in my bullet points that I still can’t see well close-up and that while the T.V. image is crisp, it often has a double image, as do all the illuminated signs at night which makes it hard to drive still and is different from the multiple, faded images I see with keratoconus.  My doctor thought that the better prescription would help, as sclerals work on both nearsightedness and farsightedness.  I wasn’t that positive, though.

I had also mentioned in my list that the intermittent strabismus, or intermittent exotropia to be exact, that I developed when my brain shut off vision to my worse eye pre-CXL wasn’t gone as I suspected.  It reared its ugly head again when I started inserting the new sclerals.  As the contacts are akin to plastic bowls filled with saline solution, I have to use a rubber holder of sorts to put them into my eyes while looking into a mirror laid flat on the vanity with my head parallel to the floor.  It’s really not that easy as the lenses are so huge and I have to hold my eyelids open very wide.

The right contact goes in well, but when I go to put in the left one, I can literally see my right eye turning out—see Figure B in the 1st image—and then my left eye that I’m trying to work with does the same!  In other words, both of my eyes are turned out and it’s a little freaky to say the least.  Now, I’m not making fun of anyone but myself here—I dated someone in high school who had exotropia and it wasn’t the intermittent kind.  Regardless, a scleral lens has to fit over the cornea, so if my left eye has wandered to the far left, out falls the lens and saline solution and then I have to repeat the process 10 more times.  Suffice to say, I’ve been a little late to appointments the last month.

My setup for scleral contacts lenses

 

It’s a very good thing I made a bullet point about that strabismus issue because my doctor did a couple of tests. He had me focus on a letter on the wall and then flipped something over my eyes in a rapid motion, so that every second I was using either the right or left eye to read.

“You do have strabisumus!” he told me, as he’s always amazed to have a patient who speaks doctor talk. Apparently, the test made my eye turn out as I started to lose vision in my right eye and couldn’t see the letter, only a blank blur.  Yet, I can somehow make both eyes turn out when putting in the sclerals for some odd reason.  That sounds like a freak show act if I ever heard one.

“Great,” I said, as I thought this was just some transient thing from having low vision for 2 years and thus some atrophying of my extraocular muscles, which control the movement and alignment of the eyes.

“Am I going to need surgery?” I asked my doctor. “You know about my scarring issues with EDS.”

He told me, “Not now at least.”

Extraocular muscles–what are lax from EDS and where I may need surgery. http://www.medicalgeek.com

 

Then, he was on a mission and started rifling through my purse, which is fine as we spend most of the time joking like we’re old friends.  I asked him what he was doing and he told me that he was looking for my phone.  I grabbed my cell and he told me to type a text.  So, I started to and he noticed how close I hold the phone to my face and he pulled my arms down.  Well, that’s not fair.  I knew he was trying to figure out my difficulty with seeing close-up and I mentioned that the screens on cell phones and my blown-up laptop aren’t horrible with my slcerals in, but print text was awful.  That was in a bullet point, but I’ll cut him some slack since he’s my favorite doctor and knows all about EDS.

He gave me the paper I had typed up in 12 font at 200% in Word to read, which now looked very small and wonky.  With the sclerals, the letters tend to move around a bit and make me feel sick; that’s the best way I can describe it, unless it’s very small text and then my head starts to hurt.  He kept putting different lenses in front of my eyes and asking if it was better, but I kept saying that I didn’t notice a difference. I figured this was the best I would ever be able to see if none of the lenses over my sclerals helped.  However, I must admit I like the rows of little lenses lined up in long drawers—it’s all so old-world and I got to wear the opera glasses again for a minute.  You sure wouldn’t get any of this from the optometrist in the mall.

 

Then, my doctor had me look up and read the paper with the bullet points directly in front of me.  He must have been watching my eyes because he had a rather deflated look on his face when he stopped me.

“You have convergence insufficiency,” he said in a rather sad voice.

“Noooo!” I whined. “No more diagnoses.  What is that?”

He grabbed something and told me to watch his eyes while he brought it closer to his face.

“Do you see my eyes moving?” he asked me.

“Oh,” I replied. “Your eyes are moving inwards as it gets closer to your face.”

“Right,” he told me, “But your eyes don’t do that and they aren’t in perfect alignment in general, either—they both turn out a bit and all of that is causing double vision.”

“So, I have more vision problems than just the keratoconus?” I asked.

“Yes,” replied my doctor, “But convergence insufficiency is not that rare.”

More information on convergence insufficiency can be found here.

Per my eyes not being in perfect alignment, he tried to reassure me that it wasn’t noticeable, but I swear that one eye looked a little off when the KC first started.  I demanded to know if I looked like Jaws from James Bond, and my doctor couldn’t believe that he was the image I associated strabismus with.  Jaws actually had acromegaly and I don’t think he had strabismus.  I should have said Marty Feldman, who was only in my favorite movie ever growing up and does the Abby Normal line I use all the time.  Here’s the video clip. He had strabismus from Graves’ disease, but I see a resemblance, and it’s not just the eyes.  He may have been a second cousin. How long until the freak show comes to town?

Igor in Young Frankenstein–my new, male twin. http://www.screenjunkies.com

 

My doctor put lenses with prism in front of my eyes and I could see the text, but my head started to hurt.  Prism bends light so that people with convergence insufficiency can see close-up and I could get readers made with them, but my doctor said they can be hard to get used to.  Contacts and glasses are just too much right now.

I remembered that when I had the intermittent strabismus pre-CXL, I did some eye exercises I found online as I was so worried my wandering eye would prevent me from getting the surgery.  I asked if that might help to tighten up my muscles, just like I do in physical therapy for my loose joints.  My doctor handed me a plastic, Popsicle stick with a tiny E on it. He told me to focus on the E and pull it towards my face and then away, which I was able to do.  I will now be doing this for 5 minutes every day, as it sometimes can help, but now I can’t remember with which issue, so hopefully it’s both.

My doctor also confirmed this could all be secondary to Ehlers-Danlos, but that maybe I had had it since childhood like most people.  I never had problems with my near vision or any strabismus before keratoconus showed up, which is around the time my EDS started to affect more of my body, so I’m betting on EDS being behind all of this, or that and and KC combined.

I left with more health matters on my mind and then got a call from the assistant of yet another specialist I need to see as I was sitting in the parking lot of CVS.  How many body parts can fall apart from faulty collagen?  I went in to get my pricey prescription and got $5.00 in Extra Bucks—free money to spend at CVS for those not familiar with the chain pharmacy. I almost make money from all my prescriptions.

Then, I remembered I needed a Popsicle stick, but couldn’t find any, until I found the little freezer that had real, lime Popsicles, one of the last fruits I can still eat.  Eating the lime Popsicle that I got for free in the desert heat made the bad news a little sweeter, especially if an employment opportunity where I can just stand while people gawk at me may be in my future.

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I SAW AGAIN, IF ONLY FOR AN ARIA

Photo Source: http://www.timeout.com

I saw the world with near perfect vision this week.  It was so surreal that my logical brain is still processing it: low vision to seemingly crystal-clear vision and back again.  I think I fell down the rabbit hole like Alice, or more accurately, I finally climbed back out.

It wasn’t really a Lewis Carroll tale.  I finally saw an optometrist who works with scleral contact lenses this week. These medically necessary contact lenses, which can work for those who are contact lens intolerant like I am, are my only hope to ever truly see again.  Scleral lenses can correct keratoconic vision and actually help severely dry eyes like mine, as the lenses are filled with saline solution which keeps the cornea and most of the sclera nice and moist.

Scleral lenses, like other specialty lenses, need to be a perfect fit.  The optometrist, who was very knowledgeable with a great personality to boot, had to determine the correct diameter lens for my eyes and then try various lenses out for fit.  The lenses seem very difficult to get in due to the fact that the saline solution can’t spill out, so he had to put them in with my face parallel to the floor, which is what I will do on my own in due time.  If I blinked while he held my eyelids wide open to get the huge lenses in, an air bubble formed and then the process needed to be repeated.  The lenses were inserted and removed with a little suction cup on a stick.

After much trial and error, I had two scleral lenses in my eyes and they gave me a smooth corneal surface, instead of a keratoconic one.  However, the doctor pointed out after looking at my corneal topographies, which at least haven’t changed in 2 months, that the center of my left cornea is now completely flat, which is not normal at all after cross-linking (CXL) and finally explains why my refractions for the FDA clinical trial show farsightedness in that eye now, not that I can see far or near for that matter.  I get a + rather than a – reading, to put it in layman’s terms.  No wonder the scan says the severity of keratoconus is 0%—the steep, cone-shaped cornea I had got bulldozed by CXL for some reason.  Well, so much for a safe surgery with hardly any complications.

The scleral lenses need a prescription in them like regular contacts, which I’m sure my good doctor was dreading by then, but regardless, I needed the scleral lenses in my eyes to get an accurate refraction.  I looked through the refractor and the doctor began flipping lenses over my right eye. Which lens was better?  I should get a lollipop after refractions at this point.  The odd thing was that I could see a difference in the lenses nearly every time for once. Suddenly, I had dark-black, crisp lines of letters in front of me.  The ghosting—or multiple images—was gone!  I read 20/20 with ease and I knew it was really 20/20.

He repeated the test with my left eye with good results, but not superb.  There was still some faint ghosting and the letters weren’t as crisp, but I read 20/30 and with ease again. I quickly rambled off the letters instead of taking 5 minutes and guessing like I normally do.  There’s a reason why the left eye—my better eye before CXL—can’t read 20/20 even with scleral lenses.  That eye has developed central corneal opacity, a type of scar, that’s in front of my pupil and is affecting my vision. The optometrist discovered it in a simple exam of my corneas, and I thought he was confusing it with the right eye, which developed opacity months ago that’s not affecting my vision. He wasn’t.  I have a serious scar in my left eye now.

This was just maddening because my idiotic corneal specialist wanted me to return to L.A. to see my CXL surgeon due to the mild opacity—more like a slight haze—in my right eye and has been monitoring this rare side-effect of CXL for months.  I literally saw him 2 weeks ago and he never noticed the scar in my left eye that has stolen more of my vision? The optometrist, who should be the M.D., luckily has a better corneal specialist for me to see who I’ve never heard of, so possibly he’s new to the area.  I wish I had been told that my vision wasn’t fluctuating at all per my scans, rather than the opposite, so I could have seen the optometrist sooner, who would have gotten me to the new corneal specialist in time to possibly treat the scar.  I trust this new doctor, and that’s a rare thing.

So, now my doctor had my prescription, which must be the strangest in the world.  He put it into what looked like opera glasses—ah, the post is making sense now.  He handed them to me and told me to look through them.  I noticed they were heavy as I held them with two hands and placed them in front of my eyes.  I could see!  I saw my doctor and there was so much detail in his face that I hadn’t seen before.  Even the color of his skin had more tones and shades.  I looked around the room as if I hadn’t been sitting in there for more than an hour.  He told me to walk around with them, so I eagerly did.

I think I was falling down the rabbit hole again.  I became extremely dizzy and felt like I had heavy moon boots on.  I noticed I was walking at some strange angle—almost on a backwards incline, yet I felt I was falling backwards so why couldn’t I lean forward?  I tried to keep walking, although I looked like a cat in kitten mittens.  I saw the waiting area that was down the hall and it seemed so close.  How could I see it? I walked towards it with my opera glasses and kitten mittens walk.  I turned the corner and saw all the glasses in display cases for sale.  I think I could have read the price tags if I cared to, but why bother when glasses don’t correct my vision.  How surreal it all was.  The dizziness was getting to me so I headed back to the room with my weird walk.

I told the doctor how I could see everything, but I felt so dizzy and couldn’t walk—as if my depth perception were off. Perhaps the prescription was too strong, although I wasn’t getting a headache and my eyes didn’t feel like they were crossing, which I’ve experienced with poorly prescribed glasses for mild myopia in years past.  He said that the opera glasses are very thick and aren’t exactly the same as the thin scleral lenses that will be right on my eyeballs.  He also reminded me that I will need to adjust to seeing again.  What an odd concept!  Then, I handed him the opera glasses and re-entered Low Vision Land.

I could see less than 2 years ago.  They say that you don’t know what you have until it’s gone, but one could also say that you don’t know what you lost until you get it back. During the aria, while I ungracefully walked around the optometry clinic with my opera glasses on, I was in la-la land—maybe I was seeing Madame Butterfly in there like I did years ago at the now demolished Seattle Opera House.  I forgot that I once saw the world this way, sans opera glasses.  In such a relatively short time, I’ve become resentfully accustomed to this horrible vision.  When it was briefly gone and then came back, I realized how abysmal my vision really is.  I truly felt blind.

That made me think this week, as I replayed my aria of sight in my mind while waiting for the scleral lenses to be made in Texas.  I should have them within a month and then I’ll know if they will truly work for me.  I’m used to my low vision again and only have snapshots in my head of that near perfect vision I experienced.  What if science invented something that could take away the unbearable, chronic pain that I’ve lived with for 12 years from Ehlers-Danlos?  What would that aria be like when my collagen acted properly and all the connective tissue in my body came back together and healed itself?  Would I just sit for hours since I can’t sit long due to the pain?  Would I feast on the hundreds of foods that my GI tract can no longer digest?  Would I regain 20 IQ points from not having a brain on pain?  Would I catch the next flight out of this horrid city and be an expat again—my ultimate dream?

I would forget what the pain is like during the aria, just like I did with my low vision.  Then, when the doctors took away whatever medical miracle made the pain go away and it all came rushing back into my body in a nanosecond, much like removing the opera glasses, I would scream the most bloodcurdling scream imaginable and it would be heard all the way in Japan—just as Madame Butterfly commits suicide with her father’s hara-kiri knife.

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