Kyoto

kyoto panorama

If Tokyo is like New York City, then Kyoto is more like Europe. There is a law against high rises outside of downtown, so it seems more residential. There are two rivers that flow through Kyoto. Driving alongside one of them on a nice day reminded me of visiting Toulouse, France. Everyone was out with a picnic or blanket with their family by the river. However, like Toulouse, Kyoto is a huge metropolitan city– not a place to visit for greenery and nature. The river was surrounded by concrete on either side, and there was only a small bit of grass.

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This is typical Kyoto- what most streets look like
This has struck me about Kyoto– for some reason I imagined it green and old, but it is really modern, urban, and gray. I understand it is still winter here, right on the verge of spring, but it honestly was kind of a letdown to my expectations. But it would be like someone wanting to visit the Civil War era in America- hello, it is 2017 now. But as an American, I imagine Japan from the old paintings and descriptions in history, not as it is today. You can still experience this, but you have to travel to more rural areas or parks.
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That being said, you have to work really hard to find the naturey places in Tokyo and Kyoto, but they are there. Otherwise you’re just walking on streets with tall buildings and traffic. The shrines and temples are tucked away off the street. Same with toco hostel- you are absolutely not going to see an old house like we stayed in unless you intentionally look for it. So, I’m glad we did a bit of research first!
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My favorite area of Kyoto was walking along The Philosopher’s Path. This is a residential area with tiny shops along a canal. I was hoping to see some cherry blossom blooms, but we are too early- we only saw some buds. In a few weeks, this area will be raining flowers. My heart ached not being able to see the area in its prime, but it was still lovely.
phil path horizontal
phil path vertical     buds
I spotted a blooming tree in someone’s yard, and this was my favorite photo I was able to take yesterday. I’m not sure if it is a cherry blossom or Japanese plum tree, but I was so happy to see some blooms! 🙂
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We visited the Nishiki Market yesterday which is absolutely worth seeing. It is an old market with cobblestone streets selling food, produce, knives, tea, and other trinkets. We saw SO many tourists here yesterday and overheard so much English- it was the largest concentration of westerners I have seen in Japan. More than anywhere in Tokyo I saw.
shrine bridge
Our guide, Hiro, took us to a local Shinto shrine called Kamigamo Shrine. Since it was a national holiday (Spring Equinox) there were several weddings happening at the shrine! It was beautiful to see. This place of worship is over 1,300 years old. It was founded in 678.
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The East is so different than the West. Today, our guide told us that you can worship at the shrine without believing any of it. You can bow and clap your hands and ring the bell and it is perfectly fine if you don’t really believe it and are just doing it out of tradition. But you either do it right or don’t do it at all. Don’t disrespect the customs at the temple. Be quiet and respectful. At least, that was my takeaway.
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The Shinto ceremony includes incense and ancient musical instruments. It sounds very ancient and eastern, unlike any sounds of music we have in the west. It sounds like honor and respect, sadness and suffering, like a call to war or a a cry of lament.
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The Japanese are some of the most grateful people I have ever seen in my life. They say thank you to the mountains, thank you to the food they eat, thank you to the god of the sun, thank you to the god who is responsible for success in business.
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Our guide Hiro told us that Japanese people do not complain. They accept full responsibility for their actions. They never feel sorry for themselves. He said, “We are quite happy to wait in line for a purchase. Even after hours, once we have purchased our item or eaten a meal, we are quite happy. We are refreshed and not tired. Then we move on to the next thing we need to do.”
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I thought about my impatience as an American. While driving, waiting in line, waiting for food. I thought about how sorry I feel for myself at times and how ridiculous I am. I thought about my laziness. I thought about how rude we are as a culture when we have to wait, or how if we aren’t outright rude, how we give sighs of passive aggression or roll our eyes at the Post Office.
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Here, people accept that you have to wait and they do it gladly. It is so strange and yet so refreshing. They are insanely polite, even if it just customary and not genuine. It changes the way a society works and how a society feels.
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I’ll bring this rant to a close– we are heading to a kobe beef cooking class at someone’s home in Kyoto!

Traveling In Japan

IMG_3729  IMG_3944Tokyo

I didn’t even plan on seeing the Ginza neighborhood but last night I did. It was like walking through the capital city in the Hunger Games books. It was spotlessly clean, with high fashion shops and lovely stores glowing in the night. Everyone was dressed smartly and beautifully. It was quiet, with the occasional car passing by as I walked the side streets to the subway station.
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I was told I would get stares in Tokyo, but I haven’t. I just seem to blend in with my dark hair and being short I guess. Walking through Ginza felt incredibly safe. The men do not stare at women like they do in the United States. Everyone is extremely polite and respectful. It was like walking through a movie set. Everything was designed and manicured intentionally. There was no trash on the street, no bad smells. I have not seen one homeless person in the city of Tokyo.
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On one of our tours, we asked about this. Were there homeless people we just werent seeing? The answer was yes, but we were told that even the Japanese homeless have a work ethic and pride. They collect cans and do work that is part of a homeless people system of sorts. They do not sleep on the streets. I cant remember, but I think they would not beg for money either.
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Many people here wear medical face masks. It almost makes me wish I had one, or be worried that I don’t have one, like they know something we don’t about getting sick on public transportation.
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I am here at the hostel sipping green tea at 7 AM. The lady who works here is cooking breakfast- rice balls filled with salmon and finely cut seaweed, then steamed. I can’t wait to eat it. She is also making miso soup to go with it.
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This hostel is a restored Japanese home. They have various rooms- a mixed gender dormitory of 8 bunk beds and a female only bunk bed room of 6 beds. Since I am traveling with Joel and Josiah, we are in the mixed dorm room, but it isn’t bad at all. The travelers here are quiet and polite and tidy. It costs $25 USD to stay here a night, which is amazing for Tokyo. The floors are wooden and creaky, but beautiful. As always, you must take your shoes off and wear slippers only inside.

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I haven’t slept much since being in Japan. The first night was the best night of sleep, 10 PM to 6 AM. Since then, I have been waking up at 3:15 AM or 4:30 AM, laying in bed until 5:30 or 6 when I finally accept that I wont be going back to sleep.
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My stomach started out strong but is really asking me to hold back on the raw seafood now. There are just some things your body isn’t used to I guess.
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Joel has been doing incredibly well in Japan. He has been sleeping better, eating better, and taking less medicine. He still finds his way to a daily or twice daily Coke Zero, (there is a vending machine on every street corner here) but he is also drinking more water and green tea. He refuses to simply do this in the US. It took us traveling halfway across the world 🙂
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If for some reason a Japanese lifestyle made Joel feel better long term, I would move here in a heartbeat. I would move anywhere in the world to see Joel feel like he has these past few days. I know it must be adrenaline or some novelty that will wear off with time, but to see him this healthy and active and happy makes me want to just move here so he can feel like this all the time. It’s been a wonderful couple of days filled with happy memories.
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We are tired and heading to Kyoto today. Perfect timing to head to a ryokan where we can hopefully relax more!
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When An Invisible Illness Makes You Feel Invisible (And Crazy)

Sometimes I write when I am inspired. But usually I write when there is some kind of suffering that feels so overwhelming that I can no longer bear it alone. I need other people to know, to see, to listen.

yale
October 2016

My husband Joel was diagnosed with a chronic illness called Multiple Sclerosis in November of 2011. He noticed one day that when he tilted his head forward, his legs went numb and tingled. The MRI showed a lesion (damaged tissue) at the C7/T1 vertebrae on his spine. His spinal fluid contained oligoclonal bands. It was clear that Joel had some kind of inflammation in his body and a neurological disease.

We learned pretty quickly that even with determination, you have to have a doctor who is leading you well, who is caring for you well. In 2012, when Joel complained to his doctor of insomnia and being constantly exhausted, his doctor shrugged and said, “Maybe you’re the kind of person who only needs 4-5 hours of sleep.” NO ONE should only be sleeping 4-5 hours a night, much less someone who is battling a chronic illness.

Joel wanted to switch doctors but no one was available. We spoke to friends and family about his discontentment with his current neurologist until someone realized they had a friend in our city who loved their neurologist. This was a doctor who was not accepting new patients (we had already tried to get in with him). The friend of a friend asked a special favor from this doctor, and Joel met with him at 5 PM, after hours. (Isn’t it amazing yet sad what can happen simply by knowing the right person?)

When Joel told his new doctor about insomnia, he said, “Let’s fix that. Have you tried this medication?” It was like a light bulb went off. He was deeply familiar with MS and other autoimmune conditions. He knew the kind of hell that people lived through with these diseases. He gave Joel options, trying different medicines until one worked. If it didn’t, he was open to ideas, suggestions and new therapies.

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We had no idea what a gift this was until now– when Joel has been without a neurologist for almost a year, and now cannot find one who will treat him in the same way.

In June of 2016, shortly after Joel knew he would be going to Yale, we called to set up a new appointment with a neurologist in New Haven. We were thrilled to learn that there was not only a neurologist, but specifically an MS Center in New Haven. However, they did not have a new patient appointment available until October 24th. We figured it would be worth the four month wait and we took it.

waiting-room

Before arriving, we sent all of Joel’s medical records and history– the diagnosis, the MRI’s, the symptoms, the medications, the three cases of pneumonia, the failed disease modifying drugs, and a list of the current medications that Joel was taking and in need of refilling soon.

We arrived thankful and optimistic, but left shocked and empty handed, with little to no treatment options.
Unfortunately, we have had really poor experiences with other Yale Health Services too- the ER, hospital, and now the MS Center. It is obvious that the training here is heavily influenced by data and research– which is great if you fall into textbook diseases and treatments. However, if you fall outside of “normal” parameters, like Joel’s case, then you are disregarded and shuffled around. No one seems to know what to do with you because you do not match the data. We have received so many quizzical looks after going through Joel’s history and not many answers.
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At Yale MS Center
We were so excited to meet a new neurologist this week, only to have her tell us that she basically cannot offer Joel any treatment for his symptoms. We were stunned. She told us that Joel will need to see a different doctor for every symptom he has– a neuro opthamologist for eye pain, a pain doctor for neuropathic pain, a headache specialist for migraines, and a primary care doctor for fatigue and insomnia.
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Joel and I stared at her, unable to speak. I repeated it back to her, and counted on my fingers the number of doctors and visits we would have to make. “Is that correct?” I asked. She replied, “Some… community neurologists (condescending tone on community) treat all of their patient’s symptoms.  Here at the Yale MS Center, we are specialists. We diagnose and deal specifically with neuro-immunology.”
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I then asked, “Do your MS patients tend to have pain?” (She had just refused to treat Joel’s pain) She responded, “Yes, but we prescribe medications specifically for neurological pain, like Lyrica or Gabapentin.” I said, “Oh okay. So if those don’t work for your patients, like both of those medications haven’t worked for Joel, then they have to go to a pain doctor instead?” The answer was yes.
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Joel then asked about fatigue. Fatigue is usually the number one complaint among people with MS.  She looked at Joel like he was confused. She asked him, “Didn’t you say you have trouble sleeping? Maybe you’re tired because you don’t get enough sleep.” Joel and I stared at each other, truly stunned, again.
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Was an MS specialist seriously questioning if Joel’s fatigue was linked to his MS? Joel replied, “Well even if I get 10 hours of sleep, some days I am still exhausted and have no energy. That only started after I was diagnosed with MS. So, can you help me try a medication for fatigue?” She pursed her lips and eyed him suspiciously. The energy in the room was very tense. Then she said, “Let’s wait until we have more data on what we’re dealing with here. We meet on Wednesday to discuss your case. You may not even have MS, so let’s make a decision when we have more data from your blood test.”
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Joel asked, “So we can’t do anything about my fatigue today?” She said, “Let’s wait.”
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I felt like I was going to cry. Joel has already had dozens of tests over the years– blood tests and spinal taps and X-rays and eye exams and MRI’s. Even if it isn’t clinical MS in the end, it is some kind of debilitating, neurological autoimmune condition. But she didn’t want to treat any of Joel’s symptoms.
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Because she was a specialist, her job was only to diagnose and treat with disease modifying drugs. He was just a case to her, a difficult puzzle. A bothersome puzzle because he has failed four different disease modifying MS medications (failed meaning he literally could not tolerate them because the side effects were so harmful) so she could not prescribe her normal protocol for him. We forced out a quiet “thank you,” and left.
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Today we saw a primary care doctor for Yale students. He was kind and helpful to prescribe the current medication Joel needs for insomnia, but still resorted to referring us to a sleep specialist for the future. I called to make an appointment with said specialist, and they aren’t available until January 25, 2017. Of course.
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This week has made me feel invisible in the medical world. Nobody wants to treat Joel’s symptoms. They are difficult and non-textbook and demanding. The three medications that make his life bearable for sleep and pain are controlled, so some doctors feel uneasy prescribing them when they do not have a long history with the patient. It’s understandable, but can’t they see from Joel’s medical history that he has needed them? Can’t they see the lesion on the MRI? Can’t they see the spinal cord stimulator scars on his back so that he could reduce his need for medication?
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Friends, we need a neurologist who will treat Joel as a human being. I mean, at this point we don’t even care if they have bedside manner or have no heart, we just need a doctor who will treat Joel’s symptoms with the medication he knows works for him and will try new things for his abnormal case.
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We are also open to functional medicine, but I am having trouble finding a doctor who is integrative– meaning they can prescribe conventional medications but also treat with holistic methods like diet, stress, and supplements factored in. We are DEFINITELY willing to travel!
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Joel and I believe that all things will be made new and that this is a “light and momentary affliction.” But until then, some comprehensive medical care to alleviate Joel’s suffering would make life so much better.
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