Monday, December 31, 2012
I spent yesterday morning trying to buy crabs to send to my relatives in southern Japan (and the afternoon working, and the evening watching old Charles Bronson movies... not the most exciting New Year celebration ever but since my doctor has told me I should avoid having fun...). On my way home, I passed by a shop that sells all kinds of crazy stuff, so I went inside to buy some light bulbs.
Near the register, they sold this strange thing. It is a rubber tube (?) that looks a bit strange... According to the text, you put this in your mouth and suck and blow on it. One type is "extra hard".
The point is to train your facial muscles, so your skin etc. looks young and healthy.
A few days ago I was teaching Swedish to a Japanese family that lived a few years in Stockholm (I teach Swedish as a volunteer from time to time, since it is a chance for me to use Swedish too).
There son showed me one of his Christmas presents, two fighting robots. You control them using wireless controls that are like the Nintendo Wii remotes. You shake your left hand to throw a punch with the robot's left arm and you shake your right hand to throw punches with the robot's right arm. To move, you punch in the air and the robot will move around because the arms are very heavy compared to the body.
The robots have a pressure sensor in the face, and they display with a red light that they have been punched out too many times and consider themselves to have lost the fight.
Thursday, December 27, 2012
It has now been four weeks since I got sudden deafness and my left ear went completely deaf. This means a virus killed the nerves in my left ear and I lost the hearing there. Even if treated, only about half the people who get this fully recover, and quite a few never get any hearing back at all, so this was quite worrying news...
I have been taking large amounts of steroids (40 mg/day for 14 days, 30 mg/day since then) and will keep taking steroids for awhile (the last time I spoke to my doctor the plan was 20 mg/day for another three weeks).
In the beginning, I could hear some very very high frequency sounds very very faintly, and nothing else. My right ear works fine, though, so in quiet environments I have no problems. When there are several sounds, my brain had problems separating sounds or to know if it was actually sounds from different sources or just one sound. That meant that I had problems hearing what people said, everything sounded like one strange sound, not like several separate sounds. It also meant I got really tired quickly, since the brain seemed to have to do a lot of extra work in processing sounds.
I could also not hear where sounds were coming from, so I could sometimes hear that a car was coming towards me, but could not hear if it was coming from the right, left, behind, or whatever. Often, I could also not recognize sounds, since they sounded very strange in the left ear (which heard only the high frequency components of the sound). Car engines and running water sounded pretty much the same to me, and some very strange sounds that I could not understand what it might be turned out to be a wrecking crew tearing down a house, etc.
After two weeks of steroids, the high frequencies were a little improved, but not so much that it helped in any meaningful way. Low frequencies I was completely dead to.
After three weeks, the high frequencies were much improved. This was great. I can now hear more frequencies, and the ear hears them at lower sound volumes too. It is not as good as it used to be, but it helps tremendously. The brain can now usually figure out where sounds are coming from (since almost all sounds also have a high frequency component), so I get much less tired.
The frequencies I can hear also include almost all human speech. This helps a lot and I have a much better chance of hearing what people say even in noisy environments. It is not as good as it used to be, but pretty good.
Still no improvement at all on low frequencies, though. Nothing. I can play base sounds on a volume that shakes the walls and makes my bone structure vibrate, but the left ear still does not react at all. The right ear hears everything, though.
That I got the frequencies for human speech back is the most important, so missing the low frequencies is not all that bad in perspective I guess. That they have not come back at all is a little worrying though. For some people, the improvement is slow (months), so I guess I still have some hope of getting some more hearing back.
Taking large amounts of steroids also has some side effects, and some of them are pretty bad. So far, I have not had any really bad effects that I have noticed. What has happened to me so far is that:
1) I get really hungry and eat way more than I usually do. This means I have gained some weight, about 3 kg. But I am assuming most of it is pure muscle. What else could it be when I am taking steroids, right? haha.
2) My skin is not doing great. Small nicks heal much slower than normal. Parts of my face react much stronger to cold than usual. Sometimes my face feels a bit stiff or strange. Since about a week back, my back has quite a lot of acne too.
3) My social life has died. When taking steroids, the risk of getting colds etc. is very high my doctor and my pharmacist tell me. So they strongly suggest being very careful about things like that, and preferably avoid being around lots of people. So I have mainly stayed at work (no one every talks to me there) and at home (watching endless movies and TV shows). For some people with sudden deafness, it seems to help to have a low salt diet, so I usually cook and eat at home now (so I can avoid salt) instead of eating at the places where my friends work or go to eat.
Other than that, I am doing fine.
After four weeks, nothing that I have noticed myself has changed since the three week mark. The hearing of high frequencies seems to be the same, the hearing of low frequencies is still 0.
I am happy about having quite a lot of the hearing of people speaking back again (though it would be nice if it came back fully, since I still do not hear it as well as I used to) and life is more or less fine. I am a bit worried that the low frequencies have not improved at all, but even if they never come back, I guess life will still be OK.
Yesterday I stopped by our magic bar on my way home. There I ran into a friend, and he gave me a birthday present. Which was somewhat surprising, considering my birthday is in October.
I got two decks of cards from an American maker that is very popular with magicians; Bicycle. I do not usually use Bicycle cards (I use super cheap cards made for kids, since they have very cute pictures on them), but they are very good quality cards. The ones I got yesterday were two special designs that were extra cute. I liked them very much.
My friend and the people he was there with were eating cake to celebrate the end of the year. So they gave me a slice of cake too.
|Avocado wrapped in meat and the deep fried, a winter specialty.|
Yesterday a Japanese plastic surgeon who studied computer science at Carnegie Mellon University in the States also joined us. It was the first time I met him, and he was quite interesting to talk to.
Wednesday, December 26, 2012
In Japan, not celebrating Christmas is the norm, but if you decide to do something Western and celebrate Christmas, the common thing would be to go on a date and to eat at a Western style restaurant (e.g. pasta).
|Entree, very good (raw) fish|
Since no one wants to date me, I had dinner with a friend instead. She also has no one to date, she claims (which is somewhat surprising, since she is quite cute and very funny). We also somewhat un-Christmasy went to a Japanese restaurant.
|Salad, with raw fish and avocado|
|Pumpkin gratin (with potatoes)|
|Slightly cooked tuna|
|Deep fried fish of some kind|
The food was very nice. My friend also gave me a Christmas present that she bought in a shop across the street from the restaurant. 2013 will be the year of the snake, so I received a snake. It will hopefully bring me luck next year, so my ear will get better etc.
Tuesday, December 25, 2012
|Even taking the fact that Japanese people are not very tall, that wall of snow is pretty high.|
We have had more than two meters of snow fall in Sapporo already, which is more than normal for December. We usually get around six meters per winter, but most of it comes in January and February. It has also stayed fairly cold, so not very much of the snow has melted. This means that there are huge amounts of snow everywhere, for instance between the pedestrian paths and the roads. So you cannot really see if there are any cars on the road and you cannot see bus stops from inside the bus etc.
|In the city center where I live, we do not have so much snow (the snow removal is very aggressive here), but the walls of snow separating cars and pedestrians are still taller than normal people.|
One of my friends bake bread and make roast beef every Christmas and I was invited over for lunch this year. She is great at cooking, so it is always nice to be invited. The food was of course great this year too. I ended up eating way too much, which is the Swedish way of celebrating Christmas.
|Home baked bread|
|Roast beef and mashed potatoes|
In Sweden, December 24 is the biggest event of the year. Traditionally you celebrate Christmas with your family and relatives, mainly by eating way too much food and exchanging presents. I have no relatives in Sapporo, and Christmas is not celebrated in Japan, so this day has a high potentiality for making you feel lonely.
My mom mentioned that she sent a Christmas package on Friday, but it usually takes at least one week for mail to reach me from Sweden. On the 24th (Monday) there was a note in my mailbox saying that there was a package for me and that the person who sent it was "Sweden". This usually means my parents, since there are only two other people in Sweden who know my address (as far as I know). And one of them only knows it because he wanted to send me his Ph.D. thesis a few years ago.
Anyway, the package was from the second non-relative of mine who indeed knows my address. She lived about two years in Sapporo but moved back to Sweden a few years ago. We used to hang out and look like a family (she had a blond daughter, so everyone thought I was the dad of course). She had sent me some chocolate from Sweden, with perfect timing.
Friday, December 21, 2012
It has now been a little more than three weeks since one of my ears suddenly went deaf (because apparently a virus killed the nerves in the ear). I have been taking massive amounts of steroids (prednisolone, 40 mg per day for 14 days, then 30 mg per day) since this is the standard treatment. Around 50% of the people that get treated recover their hearing, which is a worryingly low figure...
Now that it has been three weeks, I have some hearing again. I can hear high frequencies to some extent, though not at all as well as on my good ear (or as well as before this happened). I cannot hear low frequencies at all. You could play low frequency sounds loud enough to vibrate my whole body, and my left ear still does not notice anything. Since the high frequencies seem to have come back to a large extent, I am hoping the low frequencies will come back in time too, but the likelihood of them being gone forever is also fairly high, I am told.
Anyway, the frequencies I can pick up include most of "humans talking", which is a great help. Now I can distinguish were high frequency sounds come from, so sounds are also much easier to separate from other sounds. Before, if there was an echo in a room or if several people spoke at once, I had a VERY hard time trying to hear what someone might be saying. It all sounded like one very strange sound (all sounds melted together into one weird sound that the brain could not make sense of) and it was difficult to understand. This is somewhat surprising, since it is not at all difficult to pick up on what people are saying when you listen to a movie where several people are speaking in a mono channel with just one ear or something like that, but when using just one ear to listen to several people speaking around you, it just did not work for my brain. Now, this works better, which is very nice for me. It also makes me less tired.
That the low frequencies are still completely gone is a little worrying, but at least some things came back so I am happy about that. I am still hoping that more will come back later, but even if it stops at the current level, it is not that horrible.
Currently, the sudden deafness has mainly killed my social life. Not that I had that much fun going on before, but after this my doctor and my pharmacist both said: "On steroids you are much more vulnerable to colds etc. so try to be careful about things like that." Currently we both have influenza, the winter cold, norovirus, and gastroenteritis going around in Sapporo. So I have mainly been staying at home (when I am not working). This means I have pretty much checked of all the movies in my "I should see that movie sometime" list since over a week back, and that I am bored and alone most of my time. In four weeks, I have met up with friends a total of 1 time. I figure it is a small sacrifice to make to be bored but safe for a month or two compared to staying deaf forever. Not that being bored in any way guarantees not staying deaf, but almost anything that helps could be worth doing.
I went to see "The Hobbit" at one of our cinemas in Sapporo yesterday. The show it in 2D, in 3D, and in 3D but not dubbed to Japanese (with Japanese subtitles instead). Since I am fairly sure my Hobbit related vocabulary in Japanese is severely lacking, I wanted to see it in English, and bought a ticket for the "not dubbed, 3D" version.
I also had to buy a pair of 3D glasses, which were very cheap (100 yen, compared to the 2100 yen for the ticket). They had some different ones to choose from, clip-ons for people with glasses, tiny ones for children, and the standard ones that I bought.
I liked the movie. Very pretty visuals, and I loved the book when I read it when I was around 11 so I like the story too.
On my way home, someone in the escalator said: "Oh, it's Jonas" behind me. It turned out to be one of my friends, who I have not seen in over a month. He had been having dinner with his girlfriend near the cinema I went to.
We have a "German Christmas market" in Sapporo every December, and I passed through it a few days ago. There was a Santa Clause looking Santa Clause, some Germans selling almonds, some Russians selling matryoshka dolls, some people selling Finnish handicraft, and lots of Japanese people selling Japanese food and some vaguely German inspired food. It looked nice.
Every year the magic club at our university has a big stage magic show around Christmas time. This year I am no longer an active member (you get retired after three years) but I was there watching.
They rent a big stage in the middle of the city, and do a two hour show. This year there were 14 different performances. One of the performers had asked me to be his instructor, so I had coached him a bit. I left him very free reins. Since I learned magic by myself I do not know what to teach, so I told him how I think about magic and told him about various ways of doing things he wanted to do. Anytime he wanted me to teach him something specific I did, but in general I left the final decisions to him. He did fine, I think. He said he was quite nervous and that his hands shook a lot when he was on stage, but that is fairly normal I think. It was (I guess) his first time in front of a few hundred people.
The others did OK too, some did great, some made mistakes. Afterwards, there was also a four hour drinking and eating party where I got to speak to some of the other retired people about magic, which was nice.
Thursday, December 20, 2012
|Top selling Christmas dish at our school cafeteria (beef curry, omelette, rice, ketchup, broccoli). It is Christmas food because it has green and red colors, and is a "Western dish" (the omelette makes it "Western" by Japanese standards).|
Traditional (though it is a fairly young tradition) Japanese Christmas celebration is to go on a date with your girlfriend/boyfriend at a restaurant serving Western food. Like pasta.
What Japanese people consider to be Christmas food is also interesting. The number on food that springs to mind when you say Christmas is apparently Kentucky Fried Chicken. My guess is the reasoning is something like "Americans eat turkey. Turkey is a bird. Kentucky Fried Chicken serves birds. And it is American. This must be the food most similar to Western world Christmas food", but I could be wrong.
There are thus huge lines outside KFC on Christmas. At some KFC places you have to stand in line for hours. At some places they only serve you if you booked in advance. Bizarre.
At our university cafeteria they also serve Christmas dishes now. These include "grilled chicken leg" (though not from KFC). They also include things like "beef curry with omelette and ketchup, and a small piece of broccoli". This is Christmas food because it has green (broccoli) and red (ketchup) on it (yellow is also common in Christmas food). Anything that is green and red, and not Japanese food, is considered Christmas food. That is not exactly how we divide food into "Christmas food" and "not Christmas food" in Sweden, but still...
Thursday, December 13, 2012
Yesterday it was two weeks since my doctor told me I had sudden deafness and started pumping me full of steroids. I went back for a two week check-up, and to get more medicines.
First, there was a hearing test. During the hearing test, the nurse asked me no less than three times if I "really had been taking the medicines?"... The result of the hearing test was "maybe a little bit worse, maybe no change".
In my day to day life, I hear, or at least notice, more sounds now than I did last week, so I thought I had had a slight improvement on high frequency sounds. Not enough to actually make out what I am hearing, I just notice that "left ear is hearing something [no idea what]" in situations where I did not notice any sound at all before. So this hearing is not actually any help in any meaningful way, but still feels a little bit encouraging. Possibly it is just the brain being more sensitive, or me not remembering/noticing such sounds before.
Anyway, for low to mid frequencies, I still hear nothing at all. Which I think is the same as before, but maybe I did actually notice some low frequency sounds on extreme volumes last time? I also have some ringing in the ear now (constant, but not that loud), which I did not have the first days.
|Apart from being partially deaf making traffic a serious danger to me (I have no idea where sounds come from, currently), another good reason not to go to work by bicycle is the amount of snowfall during days with lots of snow...|
The doctor told me that some people get better quickly, some people get better even though there is no improvement early on (and of course some people never get better at all). He also said that there is no other treatment than taking steroids, so in that sense it really does not matter what has happened so far, staying on steroids is the only thing to do. Of course, taking huge amounts of steroids for long periods of time is not good, so if you start getting improvements they cut down the amounts as quickly as they dare. My doctor said that having these shock doses of steroids longer is not good, so he cut the dosage a bit for me and said to come back in three weeks.
So, not good news. But maybe not that bad news either. Having no improvement is worse than getting better of course, but it is apparently not rare to have very little change the first two or three weeks even if you are one of the lucky ones that get your hearing back eventually. And since I seem to pick up a bit more on sounds around me, I am still having some hope that at least some hearing will come back.
The frequencies I can slightly pick up on now seem to include large parts of the frequencies used for human speech, so maybe I can start hearing what people say again even if the hearing of low frequencies never comes back. That would be helpful, since the most annoying parts now is that I have problems hearing what people say to me if there is a lot of sounds in the background. My brain cannot figure out if two sounds come from the same source or not, it seems, so lots of it gets jumbled into one weird sound to me. Trying to follow a conversation in a stairwell with a lot of echoes was also surprisingly (very) difficult. Lots of interesting insights into how the brain can fail, which again would be more interesting (actually very interesting) if you did not have to worry about this stuff being permanent, haha.
|My patient card, sporting something that is almost my name.|
I had to register as a patient at the university hospital since it was the first time I was there (except once when I was interpreting for a Swedish friend). They made up a patient card but did not have space for all the letters in my name, so my card says "Sjobergh, Jona" (instead of "Jonas") in Japanese. The part that describes how to read the name (which is non-trivial to understand from the spelling of Japanese names, though easy for foreign names) uses smaller letters and has my full name, though.
Anyway, I got to meet a doctor who sent me off to get a hearing test after I explained that I probably had "sudden deafness" and described my symptoms, the medication I am taking, etc. The lady who did the hearing test first used sound and later vibrations sent straight into the bone (to see if there is a difference in you hearing sound waves and you hearing other vibrations, for example if your ear drum is busted). At the same time the put lots of noise in the other ear, so you do not react to sounds reaching the other ear by going around or through your head. This is pretty much the same test set up they had in the first hospital I visited.
My right ear is doing fine, normal hearing. My left ear is more or less completely gone, hearing-wise, though physically it is fine. For some frequencies I could feel the thing producing vibrations in the bone jumping around like crazy, but still hear absolutely nothing. Even the nurse seemed a bit surprised the first time, "So, only noise now??". It was also somewhat interesting to judge what level of sound I should have heard had the ear been doing fine, based on the level of noise put into my good ear. At some times, it was loud enough to be painful, and still no response in the other ear.
So, as before, I can hear some high frequencies but only very very weakly. Low frequencies, I cannot hear at all. This, by the way, makes many sounds in daily life sound very weird. I get only a small portion of the complete sound, so it is for instance very difficult to realize that a certain strange sound is actually the sound of pouring water etc. If I was guaranteed that my hearing would come back, these thing would be very interesting, haha. Now, while interesting it is mostly overshadowed by worry that the hearing will not come back.
The doctor later told me that he was also sure that what the first doctor though I have (sudden deafness, a virus having killed the nerves in my left ear) is indeed what I have. He also said that the standard treatment for that is steroids, which is what my first doctor gave me. He had nothing to add or change in the recommendations and thought my first doctor was correct in everything.
That is what I had guessed too, so in some sense it was a bit of a waste of 4500 yen (and money from the insurance company, I guess), but then again since it is a fairly severe affliction, having one more person telling you that what you are doing is what you should be doing is perhaps good.
He also mentioned that many people do not actually get better from the standard treatment, which I already knew. He said that should I be in the unlucky group (which is about 50% or so, apparently) that do not get better, at the university hospital they can also inject steroids straight into your ear. This makes it possible to use very high levels of steroids in the ear but still get less of the side effects of taking steroids normally (now I am taking pills). This apparently is also extremely painful ("like pouring acid into your ear"), but since being deaf forever would be the alternative, that should be fine I guess.
He said that even people who do get some hearing back may not have any apparent change the first two or three weeks, so having no improvement so far is not necessarily a cause for concern. Though it is of course better if you are already getting better.