Blurred Margins: An Account of Optic Neuritis in the USSR

doi:10.62055/62682939Mk

Foreword

Here, we have a patient’s perspective of optic neuritis⎼which is unique enough in itself to bear further inspection. But because the narrative is by an American paleontologist in Soviet Georgia, it is all the more compelling. Kent’s diary from 1976 Tbilisi⎼a capital city nestled between Russia, Turkey, Armenia and Azerbaijan⎼sheds light not only on the experience of vision loss, but also the isolation of a month-long stay in a hospital ward among Georgian natives. Even by train, he is a 36-hour trip from Moscow.

Although the Soviet Union was dismantled in 1991, the author still today hesitates to publicly reflect on his experience. We follow him through treatment before intravenous steroid became standard of care.^[1] There is an element of intrigue as he describes the obsolete drugs he was given; the Georgian black market; and the doctor who dares not talk to Americans for fear of retribution. His journal is like opening a fifty-year time capsule. It is a reminder of how medicine continues to evolve; and it is a reminder of how fortunate we are for the health care we have today.

–Kristen Lamoreau OD

April 2024

 

JOURNAL

 Sunday, 12 December 1976

My right eye is sore and blurred.  I think it is caused by the microscope.  I must have my eye checked by Ire’s^[2] aunt, an ophthalmologist.

 

Monday, 13 December

My right eye is worse. I looked up Jeff Fisher, the American doctor who is accompanying the photography exhibit, hosted by the United States Information Agency (USIA).^[3]  He looked at the eye with a flashlight, the only equipment he has, and told me it may be infection or early cataracts.  He thinks I should go to Moscow to see the embassy doctor.  He is going to call that doctor today, and maybe I can make the mail run for the photography group.  Meanwhile, the image in the right eye is gray and blurred.

I think I will try to see a Soviet Academy of Sciences doctor today.  Theoretically, my medical problems are to be provided by the Academy of Sciences.

 

Wednesday, 15 December

On Monday, I went to the Palaeobiology Institute and explained my situation to Ire who thought we should go to see her aunt, professor of ophthalmology at Tbilisi State University with an office in the new hospital of the Republic.  Iver borrowed Thomas’s car to drive us there; on the way, we were stopped by the militia for a routine check. Iver apparently told him I was an American and we were going to the hospital. The militia man looked at me, was convinced that I looked foreign enough, and waved us through.

At the hospital, Ire and I took the tiny 4-passenger elevator to the 8th floor and waited for her aunt.  She finally arrived and we got into her office immediately, although 12-15 other people were waiting to see her.  She examined the eye, had a student put drops in it, then told me to wait an hour.  For the next 1½-2 hours, she was in the operating room while I sat in the waiting room with the family of the man being operated on and other patients.  Periodically another doctor would come through and pull up the flap over one of the patient’s eyes and examine the operation scars.  Some were grotesque. So was the family of the patient in question; they wept and talked.  Occasionally, they would go to the door to watch the operation.

As soon as it was over, Dr. Shatilova walked out of the room and was attacked by a dozen people again.  But I was admitted to her office where she studied my eye for 15 minutes or so.  She told me to come back the next morning.

Ire called Monday evening and told me she would go to the hospital tomorrow with me.  On the way there, she, I think, was preparing me for an operation.  But once there, Dr. Shatilova examined the eye once again and surmised it was infected nerves.  A second doctor examined the eye and agreed. My vision was tested and my head was examined.  Finally, I was given a shot in the area around the eye.  And Ire was given the diagnosis.  Now I am waiting to be admitted to the hospital.  The Academy of Science agreement clearly states that the Academy pays for my medical care.  But the necessary papers are taking forever to get (so what else is new?).  I was told to expect 2-4 weeks in the hospital!

We have considered the alternatives, but there seem to be none.  It would take nearly a week to get clearance to get out of the country, and my eye needs treatment now.  The hospital gives me and Nancy^[4] the willies, but it is the best available.  I have confidence in the doctor.

Nancy talked to Jeff Fisher who seems to think the diagnosis is reasonable and the expected stay in the hospital appropriate.  I talked to him Sunday night and every day since then, but he does not have an ophthalmoscope so could not examine my eye very thoroughly.  He thinks there may be some permanent eye damage but that the eye will improve.

So meanwhile, we wait for the beginning of treatment.  We have called all of the appropriate people and are waiting for actions (I’m glad it isn’t appendicitis!).

This morning, we have no hot water or heat.  It has turned cold and windy.  We are in the room trying to keep warm.

The Aunt and Uncle (also a doctor), it turns out, raised Ire after her father died.  They legally adopted her so her name is the same as theirs.  It makes me wonder even more why her father died in Siberia in 1937. (Later Ire told me that her “father made a political mistake.” Perhaps Stalin’s purge.)

 

Sunday, 19 December 

Wednesday afternoon, Ire came to the hotel room and we went together to the Republic Hospital where I was admitted, issued pajamas, and ushered to a room.  My room is a single located between the operating room and the waiting room.  I have a metal cot, a wardrobe whose door doesn’t close, and a table.  There is a sink which runs (not drips) constantly.  No one seems to notice or think it odd, but then later, I noticed that most faucets on this floor run or drip.  There is a toilet in the little entryway which is clearly meant to be used only by the patient in this room.  But everyone uses it because it sort of works whereas most on this floor do not.  The window doesn’t close, the linoleum is bound up around the base of the wardrobe, and the toilet above leaks down the wall, apparently.  The hospital is about 3 years old.

The other patients are from throughout Georgia.  Most don’t speak Russian. They are housed in rooms of 4-8 patients except for the additional patient who must use the couch in the waiting room.  Most of them have huge gashes around one eye, left from surgery.  They apparently have been told not to come into my room for they stand around the door and peer in when it is open but no longer walk into the room.  When I go to the nurses’ room for shots, some of them will say “American, yes?” to me or otherwise try to learn something about me.

I have a single room not because I am contagious, but because I am to be isolated from the natives.  I don’t really mind – the conditions are primitive enough for my taste!

But I have confidence in the doctors.  I have seen a half dozen or so and have had as good treatment and attention, I think, that I could have gained at home.  Dr. Shatilova tries to explain things to me in English and examines the eye nerves daily.  She calls in other doctors to substantiate her diagnosis.  Another doctor, Davy, who is our age, served us supper last night in his office. He knows a little English and is curious about our situation.

There is some improvement in the eyesight around the right edge.  I am hopeful that recovery will speed up.  Each day I have a shot of strepo^[5] in the eye socket, gauze soaked in adrenaline^[6] stuffed up my nose, a half dozen shots in the rump and 3-6 pills.  Now I feel good, just waiting for more eyesight.  Dr. Shatilova says that, “In most cases, the eyesight returns.”  Mine is, but very slowly.

 

Monday, 20 December

It’s just me and the running water in the sink.  I feel like I’m camping next to a babbling brook.  I tried to calculate the discharge and concluded it is about 1-2 gallons/hour.  I cannot imagine such waste at home.

I killed two more cockroaches this morning – none in the bed this time.

I see a little light around the edges of my eye now.  If there is motion, I can detect it.  I think the sight is better but clearly not as good as last weekend.  They gave me another shot at midnight.  My medication now is one shot of trintal^[7] in the eye each day; a decreasing number of gantomitsan^[8] shots each day – yesterday 2, one of which was in the eye; a shot of vitamins and tseporine^[9] in the rump; adrenalin gauze up my nose for 30 minutes; and until yesterday, 3 pills once or twice a day.

 

Tuesday, 21 December

I see more improvement in my eye again this morning.  I can now delineate objects in the room, such as the bed, the table, etc., but I cannot see buildings out the window yet nor can I see the letter chart in the hallway.

The heat in the room and in the building is stifling; it’s maybe 85-90℉ in here.  I could not sleep most of the night because of it.  The vent regulator doesn’t work, of course, and the window, which is always open, is blocked by a storm window.  There is about a 2-day time lag between a change in the weather and turning the furnace up or down.

Yesterday’s medication included ½ a white pill, the powder, the adrenalin, two shots (trintal and gandonitsan) in the eye socket, and two shots in the rump.

I saw a car drive by 8 floors below.

Perhaps I should say something about the food here.  About 9:30 we have breakfast consisting of hot cereal (until today it has always been a cream of wheat, but today was oatmeal) with butter on the top, curds with sugar, tea, and bread.  Lunch at about 12:30 consists of a warm cup of milk, a boiled egg, and bread.  Dinner, 2:30 – 4:00 is shchi, the cabbage soup of all the USSR, pieces of meat (always beef!) with noodles or potatoes in a bowl, compote, and bread.  The beef is truly amazing since we rarely see it in stores, and it is very expensive.  And at about 6:30, tea and leftovers are served.  I get all of my meals in my room.

 

Wednesday, 22 December

This is my eighth day in the hospital.  Clearly there is an improvement since the time I arrived.  Each day I notice a little better vision.  Yesterday when Dr. Shatilova examined me, she confirmed the diagnosis had been accurate, although not as evident then as now.

It is still before 7:00 but already I have had one of my shots.  I had one at midnight also.

Nancy came early again yesterday.  They had closed the library for a second day because of no heat. In the evening, Ire came by.  I gave her the first draft of the Nature paper.  She had apparently spoken to Dr. Davitashvili about it and received his approval.  Now she is on leave while I am in the hospital. I hope her aunt doesn’t decide to keep me here longer so that Ire can have a longer vacation. It is a conflict of interest!

 

Thursday, 23 December

I’m up early again this morning.  My eye seems about the same, but maybe there is a little improvement.  It is too hard to tell.  Since Monday, progress has been slow.

Nancy was here yesterday, and Iver stopped by in the late afternoon with a bag of dried persimmons and a letter including an article from the Des Moines Register about my research at Okoboji.

Yesterday I wrote 4 letters, 2 lectures, and finished a book.  Now I am out of reading and writing materials.  I also worked on crosswords and solitaire.  The grind of the hospital is becoming real.

 

Friday, 24 December

I’m up before seven again, but unlike other days, I had a good night’s sleep.  They came in to give me my midnight and 6:00 a.m. shots and after the latter, I got up.  I’ve killed the usual number of cockroaches this morning (one might assume there wouldn’t be cockroaches with this much cleaning, but one must observe the cleaning in progress first!).

I was not encouraged by my progress yesterday, but they gave me the eye test where you observe the moving light.  I did well except when it was directly in front of me.  So there is progress.  It is too early to tell this morning, but I will test myself on the buildings across the way when the sun rises.

Yesterday morning there was snow in the front yard here and on rooftops.  It is the first snow we have had in the city.  The sun was out, however, and melted it back several hundred feet up the mountain.

Nancy came in the afternoon and brought some books from the library.  I started Faulkner’s Intruder in the Dust.  Interestingly, all of the books have racism as a theme – 2 by Faulkner, Forrester’s A Passage to India, and Gide’s Travels in the Congo.  No wonder they think western society is racist and Soviet society is pure.  Modern writers, such as Vonnegut are being translated and no doubt add to the common suspicion that western society uses drugs.  In both cases–racism and alcohol–we have never seen it so blatantly as we have here.  Hard drugs are probably not as common as in the U.S., but it would never be reported, so who knows.

I wrote another lecture yesterday.  Dr. Shatilova told me I was working too hard and must rest more.  She has no idea what I do, so I suppose she heard from Ire that I had written the article.  At any rate, I went to bed and laid there without anything to do.

The USIA guides have been nice to Nancy. They, for the most part, have become fed up with life in this country after 6 months and will be glad to leave at the end of January.  Because they are State Department employees, they get more harassment than we do.  But by the same token, they have more conveniences which the U.S. government has shipped in for them.  I’m sure we have more contacts with Georgians.

 

Saturday, 25 December

I’m up early again this morning after a fairly sleepless night.  I do not feel fatigued, however, since I’ve been in bed for 10 hours.  There seems to be a little more improvement in my eye, although it is difficult to distinguish progress from day to day.

This is Christmas, at least according to the calendar.  Nancy said she would come out in the morning today for a full day of bedroom sitting.  The other Americans invited her to parties last night and today.  She went back to the hotel to one last night.

Yesterday Jeff and Patti Fisher came out with a bottle of wine.  I enjoyed their visit.  I found Davy, the English-speaking doctor who is my age and who said he would like to meet an American doctor, but halfway to the room he decided it was not a good idea.  No doubt he is under surveillance because he speaks English, and he did not want to be caught in the room without first getting permission.  He suggested meeting Sunday.  Jeff has already asked the USIA Soviet hosts if he could visit a hospital here so maybe he will pursue it from that angle, and I will apologize to Davy.

In the evening, Zili stopped by with food and a toy Christmas tree.  She wanted to wish us Merry Christmas.  Her family is nominally Catholic since her grandmother is from Germany.

People at the library sent more food and coffee.  It’s strange that coffee is not available in the stores, but people can get it on the black market or maybe in the hard currency store for local residents, not the Tsitsinatela^[10] we know.  (Hard currency buys everything!).

Jeff suggested I go immediately to the emergency room of the University of Wisconsin hospital when I return so an ophthalmologist there will look at my eye. He did not think it was necessary to leave immediately for the states, however.

 

Sunday, 26 December

Early mornings are the only sane times around this hospital.  Other patients don’t get up until 8:00 or so.  Nurses and doctors are fairly quiet until then too.  My 6:00 a.m. shot usually arrives about 6:45 by which time I am up and reading.

Nancy ordered bourbon from the embassy in Moscow on the weekly shipment for the photographers.  We had a little glass of bourbon–our first since the U.S. It is cheaper and better than the watered scotch we can buy at Tsitsinatela.  Also, we can pay dollars at the embassy and not circulate the hard currency through this country’s system.

My eye is better today.  I can almost see writing on the page, which is a first.  I can see through the worst haze, in the center of the eye, and can make out objects at a not great distance away.  I wonder if I can see the mountains across the valley when the sun rises.  There is even a little color.  I am off gantomitsin now and instead get 4 shots of tseporine a day.

Last night, after I had gone to bed and Nancy had left, the nurses brought pastries to the room for us.  I think it was a recognition that it was Christmas.  It was a nice gesture, particularly from the nurses who aren’t very warm.

 

Monday, 27 December

My eyesight may be a little better this morning, but only just barely.  I didn’t sleep well and that limits improvement.  Dr. Shatilova examined me this morning and said she could see improvement.  But my sight is only slightly better.  She changed my medication for this week.  Apparently, she and Ire talk considerably because she asks the same questions that Ire does (about leaving, etc.).

 

Tuesday, 28 December

There seems to be a little improvement in my eye each day.  But it goes very slowly and is discouraging.  Today I can make out lights in the apartment building across the way.  Yesterday when the sun was up, I saw the little trees in the hospital’s front yard, and I could distinguish the horizon.  I can make out the large items in the room and some smaller ones at close range.

Yesterday I talked to Dr. Shatilova again. For example, yesterday afternoon a new nurse put electrodes wrapped in cotton and soaked in something, hydrocortisone, I think, up my nose.^[11]  With a metal plate on my back, I was hooked up to a machine for 10 minutes.

Nancy came about 3:00 and stayed until about 7:00.  She is exasperated by this whole business–my slow progress, the trolleys, and the mud. I finished Intruder in the Dust and am now reading Forrester’s A Passage to India.

 

Wednesday, 29 December

No eye shot yesterday.  I am on an every-other-day schedule now for these injections.  I am still getting tseporine in the rump.  They took much blood yesterday–from both arms.  The electrode machine is for getting hydrocortisone and adrenal into my eye blood vessels quickly.  They expand those vessels which allow more blood to pass through the infected area.

 

Thursday, 30 December

The sun did not shine yesterday or today.  But I think there is some improvement in my eye.  It is too cloudy to adequately see the buildings across the way, but I think they are there.  It is easier to see improvement if I compare to one week ago rather than to one day ago.

Still no mail.  It must be the New Year’s card rush at the post office which has slowed the mail or maybe it was our letter to Jimmy Carter.  At any rate, maybe today.

They are giving me something each morning which makes me drowsy.  I cannot really sleep because of the interruptions, but I cannot sit up either.

 

Friday, 31 December

I have not received any injections since yesterday now.  At midnight, I went to find the nurse who said it was not necessary for me last night.  So, either I am off tseporine or there is poor communication among the nurses.  I suspect the latter.

I tested myself for a long time yesterday.  It is clear that there has been progress.  The center of the eye is still foggy, but the fog is penetrable and its area is smaller.  I have no idea how long it will take for the vision to be completely restored, but I am setting my goal as a week from Wednesday, the 28th day here.

There is still no mail.  Nancy went to Intourist^[12] to complain yesterday.  They reportedly are checking.  If none comes today, we will have none tomorrow either, tomorrow being the holiday.

Nancy came to the hospital early.  We had a long day of talking.  She left about 7:00 to get back before the mail desk closed at 8:00.  On her way out, she met Ire and Ia who were coming to visit.  Ia brought food, some of which I will eat, the rest of which I have discarded.  Ire brought some cake from a bakery which she cut a piece out of to see if it was good (ha ha!).  They were both surprised to find me reading And Quiet Flows the Don^[13] and could not believe that it was published in the U.S.A. Now, I suppose, I must finish Don so that we can discuss it.  I was only reading it because that is all I have left, besides Andrew Gide, on my reading shelf.

I finished another paleontology lecture yesterday.  That makes 7 done now.

I did not receive my sleepy medicine yesterday for which I am grateful.  I accomplished a few things.

 

Saturday, 1 January 1977

I wait for gamolone^[14]. There was much intrigue about how it would arrive: from the Academy, the Institute, individuals or medical people. It was obviously in short supply and coming from who-knows-where, but Jeff Fisher thinks it is a steroid which will not “cure” the problem, but perhaps mask its progress.

I talked to Davy and the Director who say I will be here for 10 days then become an outpatient.  At that time, they hope to re-assess my eye. Davy also said my blood has not nor does not show any sign of the infection.

Gide’s Travels In the Congo forced him politically to the left – hence that is why the book is here. I wonder what his reaction would be if he had instead spent his time in the USSR?

 

Saturday, 8 January

Yesterday I left the hospital but must go back every other day for shots and medication.  Nancy came about 11:00; I was able to leave about 2:00.  We came back to the room on a bus which was like sardines.  A gentle snow was falling which has continued to the present. There is no snow removal from sidewalks or streets.  It’s very picturesque but an awful mess.

When we got to the room yesterday, there was a little heat, but no hot water.  The same has held to the present.  The temperature in the room is approximately 60-64℉, which is tolerable.

The hospital never did produce any gamalone!  We are still waiting.  Meanwhile, they were going to give me tablets to take in the room, but they couldn’t be found either.  Also, I was to get 2 shots in the eye – trintal, and gintomytsia^[15] and dexalzone^[16] – but the latter couldn’t be found, so I only got trintal.  Any improvement I have made is due to my own initiative, I think.

The director of the eye clinic, Dr. Machavariani, asked me to sign the guest register.  He showed me what the other American, from Wisconsin, had written.  He was in the military and suffered a detached retina, probably while in the Black Sea.  He was in the hospital for only one night, February, 1974.  In my 3 paragraphs, I spoke highly of the hospital – what else could one do?

I finished Travels in the Congo this afternoon after some debate about whether it was worth finishing.

“After this experience, I think no country will ever seem monotonous again, nor any journey tedious.”^[17]

 

^[1] The Optic Neuritis Treatment Trial was first published in 1992

^[2] A fellow scientist researching pollen dating in the fossil record

^[3] A government diplomatic agency that was created to improve public opinion of the US in communist countries (1953-1999)

^[4] The author’s wife

^[5] Streptomycin, an aminoglycoside antibiotic

^[6] Adrenocorticotropic hormone (ACTH), which, like a corticosteroid, acts on the adrenal cortex to release cortisol

^[7]pentoxifylline, an agent that affects blood viscosity, used to improve blood flow

^[8] Gentamicin, an aminoglycoside antibiotic

^[9] “Sporin,” short for cephalosporin, a beta-lactam antimicrobial

^[10] Hard currency store

^[11] Used in some countries as a treatment for inflammation

^[12]  a Russian travel agency, founded in 1929

^[13] A Novel by Russian author Mikhail Sholokhov

^[14] Gaba-aminoacid, a Russian homeopathic medication that is believed to increase blood flow in the brain

^[15] Gentamicin

^[16] Dexamethasone

^[17] Gide, p. 339