Category Archives: Other illness

Summer news

Summer fireworks

2016 Fireworks, Ome-shi, Tokyo

The cicadas have started serenading Japan again, signaling the official arrival of summer in the country. Finally, summer has arrived! Actually, summer arrived a month ago. But let me pretend that it has just arrived. I love summer. Nothing best describes summer than “fun”. Of course, dreadful things also happen in summer but somehow the summer season lightens up any misery, at least for me. My best memories were all made in summer. Nothing, not even Bell’s palsy, can ruin my summer 2016. Continue reading

Blink

For the first couple of days after I developed Bell’s palsy, the song Big Girls Don’t Cry played in my head each time I stepped into the shower or washed my face. It had nothing to do with Jersey Boys but with a decades-old TV commercial for no-sting baby shampoo. Bell’s palsy, however, teaches you that it’s not only shampoo or soap which can sting your eyes. Ordinary water can be painful as well, all because your eyes cannot blink.

Bell's palsy faces

Bell’s palsy faces: looking normal, grimace parading as a smile, and the kissing mood (Ooops, they have nothing to do with the post)

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Can’t move my face

June 9, 2016, Thursday, started out like any other day. As I put on makeup that morning I mapped out my day. Which work assignment do I begin with? Which colleague will most likely pester me with rush work today? Will I do well in my practice Japanese listening test this afternoon? Will it be a good day? Where shall my husband and I go for dinner? As usual, I dropped by Starbucks to get my soy cappuccino to wake me up properly. When I got to the office, I almost immediately began typing away on my computer.

That normal day began to take a different shape around lunchtime. It started with a small discomfort in my left eye, as if there was a grain of sand lodged in it. I attributed it to my contact lens drying up and reached for an eye drop. Continue reading

Where’s kindness?

self-doubt-424968_640

I’ve been angry these past couple of weeks after I heard about Robin Williams’ suicide. My anger is not directed at him but at those who were callous enough to call him selfish, cowardly or worse for choosing when to leave the world. Continue reading

Transience

The Ant

At one diabetes forum, a Type 2 diabetic in his late 20s recently asked whether Type 2 diabetes reduces his life expectancy. This is a valid question, especially coming from a young person with a full life ahead of him. I know that the prospect of a shorter life occupied my thoughts, along with other worries, when I was diagnosed. I’m sure many others with diabetes had the same question when they were told of their medical disorder and probably still harbor the same worry. No Type 2 diabetic can avoid contemplating the possibility of a life cut unnecessarily short since most public discussions on this disorder center around complications, and from my limited observation very few talk about Type 2 diabetics who live long, healthy and active lives as if they are extremely rare creatures. Continue reading

Malaise in March

The early days of March promised an exciting and action-packed month. On the first two days of March, I was on a ski trip to Zao, a resort I have never visited before, and stayed at an old lodge that was taken over by a fun, young and genuinely hospitable snow-loving couple. Then a couple of days later, I went to the Rolling Stones concert On Fire, and they sang my three favorite songs, which as far as I can tell on youtube they have not done before.

But the promise quickly turned to nought. On the Friday after the concert, I woke up to a massive headache, pervasive joint aches, slight fever, cough, loss of voice and painful tonsillitis. I was confined to bed that day and for the next three days. I had no appetite and no energy, and spent those days sipping Bovril beef tea, English tea and my husband’s lemon-ginger “tea” with a dash of whiskey. I lost close to four kilos – no, I do not recommend getting sick to lose weight. My BG was surprisingly low – no, I do not recommend getting sick to lower one’s BG (on the contrary, illness is bound to raise a diabetic’s blood glucose).

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Thank you Doc!

Boat

Boat

I’ve been watching old episodes of Doctor Who (I’ve now been acquainted with the Fifth Doctor), who (in case you don’t know who I am talking about) is not a medical doctor. But the “Doctor” in Doctor Who led me to think about my doctors, mainly my GP and my endo, and their nurses and other staff.

I’m truly grateful for having a good medical team. Members of my team are more than just issuers of  metformin prescriptions or overseers of medical checks. They are part of my control over Type 2 diabetes and my health in general.

Mind you, they are not perfect, but they are as close to a dream team as I could hope for. For one, they talk to me. I mean, they actually ask me pertinent questions and listen to my answers, my difficulties, my complaints, and my little triumphs in living with a chronic condition.  They explain the results of my tests. They tell me what they think we should do if they are not happy with the results. They voice out their concerns and listen to mine.

They may never completely understand what I go through everyday, but they try. They even remind me to be more mindful of my diet during the holidays, and gently tell me not to be too harsh on myself if I slip up during December’s almost endless bonenkai (“forget the year” parties, Japan’s version of countless Christmas parties). They tell me not to quit running. They remind me to drink water and to avoid sweets, rice and noodles.

They do not know all the answers or pretend that they do, but they find out for me. They acknowledge that I would know more about my diabetes than they would ever know, let me decide the direction of my diabetes treatment and support my decisions. They trust my judgment, and I trust theirs.

They assuage my fears. They try their best to help me navigate through the pitfalls and challenges of my condition. They prop me up by reviewing my history to show me how far we’ve come.

They make me feel like they are taking this life-long medical journey with me.

Thank you.

 

Goodbye Peter

In May, I wrote about people I admired, including Peter, a friend of ours who was battling leukemia. Two weeks ago, he finally succumbed. This is an account of his wake and funeral.

The Wake

We received the news of Peter’s passing on the evening of August 16 (Friday, the night before my recital). My husband had just gotten off his mobile phone after speaking to a friend, when his phone suddenly (ie, by itself) started dialing Peter’s number. My husband quickly ended the call, as he had not intended to call Peter. But he changed his mind and called anyway since he had not spoken to Peter in nearly two weeks. Peter’s widow (whom I shall name Mrs. P) took the call and gave him the sad news. It turned out that Mrs. P had been trying to call my husband but couldn’t get through to him, and my husband’s phone history did not register any call from her. I guess Peter wanted to let my husband know in Peter’s own time.

Thus, right after my recital, my husband and I went straight to Peter’s wake. Like most cultures, Japan has its own traditions in bidding farewell to their dead. In most cases, the Japanese observe Buddhist ceremonies (such as chanting of special prayers by Buddhist priests and the deceased receiving a new name). In Peter’s case, we observed only the secular rituals.

At the funeral home, staff members were on hand to guide everyone on what to do. It’s such a relief not to have to think of what the proper rituals are supposed to be. I should know, as I went through that when my mother passed away nearly 16 years ago and we had to listen to everyone’s idea of a proper ritual for the dead (all based on their own superstitious belief). Here, the staff members take care of that, and they were as unobtrusive as possible. They handed each of those who were present at the wake a white carnation which we placed on a table in front of Peter’s coffin. On another table were placed some of Peter’s favorite things that Mrs. P selected to accompany Peter in the next life. These things included his brushes and paints, a couple of fishing rods, a couple of books, some beret and Japanese bandanas, music CDs and two pair of shoes. After placing the carnation on the table, my husband and I spent a few moments with Peter.

The wake was only for family and very close friends. Peter and Mrs. P had no children, so family consisted of Mrs. P’s brothers and their families, and a niece and a grand-niece (ie, the niece’s daughter) of Peter who flew in from half way across the world. My husband and I felt privileged to have been invited. I learned that evening that Peter was my husband’s very first friend after my husband arrived in Japan some 40 odd years ago.

Peter’s two relatives did not expect to be attending his funeral. They were originally scheduled to visit in October, when Mrs. P, ever hopeful, expected Peter to be in better shape to receive them. But his grand-niece, who was quite close to Peter, couldn’t shake off the feeling that they should not wait and should visit soon. If it weren’t for the fact that flights to Japan were full, they would have left a day earlier and be in Tokyo when Peter took his last breath. But, he died on their way here. Nonetheless, it was providential that they were at least here for Peter’s funeral.

After relatives and friends have had their moments with Peter, we had a simple dinner at the funeral home in his honor. Everyone got to know each other better, as well as spoke about their memories of Peter. The dinner was generally lively, just like Peter and how he would have wanted it to be.

After dinner, we moved to a tatami room that acted as the visiting room. Mrs. P asked my husband and me to join the funeral the next morning. In Japan, it is common to have the funeral the day after the wake (which is usually a one-evening affair). As the funeral and cremation were scheduled for early morning, we stayed the night.

The Funeral

At exactly 8 am the following Sunday morning, the staff led us back to the room where Peter was laid. Mrs. P’s eldest brother delivered an emotional eulogy. Following the eulogy, each person present stood up, walked to the coffin, took a white carnation, silently said his or her goodbyes to Peter, placed the carnation on the table in front of the coffin, and bowed to the rest of the mourners.

After we have paid our respects, the staff moved the coffin to the middle of the room and asked each one to choose something from Peter’s belongings and place it inside the coffin. Mrs. P encouraged us to participate. All the while, she also spoke lovingly to Peter while packing his favorite things with him. After these belongings have been placed inside Peter’s coffin, the staff asked us to place the white carnations inside the coffin. When this was done, we were asked to fill the coffin with flowers from the massive flower arrangement that served as background to Peter’s coffin during the wake. Only Peter’s face remained visible, beautifully and peacefully surrounded by flowers. After Mrs. P’s loving, final farewell to him, the coffin was sealed.

At the ground floor, the ladies were directed outside the funeral home to stand near the hearse, while the men were asked to carry the casket to the hearse. Mrs. P was escorted to sit in the hearse while the rest of us got unto an air-conditioned mini-bus that brought us to the crematorium, which was just a few minutes away from the funeral home.

The Cremation

At the crematorium, each of us was asked to again place a white carnation on a table in front of the coffin. The carnations, together with a bouquet of flowers, were laid on top of the casket.  Also on the table was the urn where his cremated remains will be placed.

We then accompanied the coffin to the furnace. I expected to see fire when the furnace door opened, but there was none. After the furnace door closed, we were escorted to a waiting room on the second floor. Various beverages including beer were served. We spent the time getting to know each other even more. I learned that Peter’s niece is a Type 1 diabetic and that although she generally does not eat a lot of carbs, she partook of the sushi and tempura served at dinner at the wake. I would not have guessed she was diabetic if her daughter did not casually mention her mother’s high FBG. To all nervous Type 1 diabetic would-be moms, I can tell you not to worry so much. Peter’s niece has two beautiful, smart and outgoing teen-agers.

After nearly an hour and a half, the crematorium’s staff asked us to return downstairs. But first they asked Mrs. P to identify Peter’s remains. I guess they meant Peter’s glasses or remains of his fishing rods, and to confirm that he came out of the furnace he went into earlier. They wouldn’t allow Mrs. P’s brother to do it for her, but gently insisted that Mrs. P herself (accompanied by her brother) make the final confirmation.

In the meantime, we were escorted to a small waiting area. I could smell burning. The smell wasn’t offensive at all, just the smell of burning. When Mrs. P and her brother, accompanied by a staff member, appeared, they came with a rolling table with a tray of bones and an empty tray. Yes, bones, not ashes. I was expecting ashes, but my husband told me the Japanese usually do not ask the bones to be ground to dust.

After a few introductory words, a staff member set aside the bones of Peter’s skull on the empty tray, then asked us to line up in twos. We were asked to pick up a bone, two at a time, with chopsticks and transfer it to the urn. I believe that two people were supposed to either pick up the same bone at the same time or pass one bone from one person to the other, in either case using chopsticks. But we did not do either. Rather each one simply picked up a bone and gently placed it inside the urn. I figured that since none of the mourners was Japanese, the staff did not see it necessary to correct what we were doing. It taught me that not all Japanese are punctilious about procedures. By the way, the ritual explains why, in Japan, no two people hold anything (especially food) at the same time with chopsticks or pass anything from chopsticks to chopsticks – this is considered a major social faux pas.

After we all had our turn, a senior staff member carefully placed the remaining bones inside the urn. He identified some of the bones, such as the knee and a neck bone (which I understand is the most important bone). The last bones to go in were Peter’s skull bones. Once the transfer was completed, the staff took out a brush and a small pan, and collected every single speck visibly left on the trays and deposited them into the urn. Then, he covered the urn and handed it to Mrs. P.

Lunch

After the cremation, we went back to the funeral home for lunch. At the head of the dining table were Peter’s self-portrait on an easel and a small table with an offering of food and drinks. Like most Buddhist societies, we offer food and drinks to the deceased so he or she wouldn’t go hungry or thirsty in the afterlife. We ate and drank to Peter’s memory.

Finally, we went home.

Peter’s memory and his last days

Peter was a well-loved man. He was a kind man with an infectious sense of humor. His niece told stories of how, when he visited home, he would regale them with tales of his travels and exotic Japan. He also adjusted quickly to technology and loved to talk to people, including his grand-niece, on skype.

The past seven years of fighting leukemia could not have been easy for Peter and Mrs. P, especially in the last couple of years when his kidneys failed. But both of them managed to find humor in his situation, and was even able to travel to Thailand more than once when his dialysis requirements improved. Mrs. P told us that during one trip, when the airline staff saw Peter’s condition, they were bumped up to first class. They certainly enjoyed it.

Peter’s condition deteriorated in the past few months, although he tried to be upbeat. But his doctor said that the only treatment left for him was either not approved in Japan or was waiting approval (sorry, I can’t remember which). In any case, he could only get the treatment outside Japan, such as the UK. He thought that it was time for him to go and for Mrs. P to move on with her life. He ultimately asked Mrs. P to “finally let him go” (Mrs. P made him promise he can’t go unless it’s with her permission). It was a difficult decision to make, but she did let him go.

One of the last things they did was to visit a fishing tackle shop. Peter used to fish and collected fishing rods and reels. Mrs. P arranged for medical transport and help so he can visit the shop. He spent about half an hour in the shop and was ecstatic to see all the fishing gears and equipment. I’m sure he couldn’t have asked for better last few days in this plane of existence.

Two weeks ago, on my late mother’s birthday, he went peacefully.

Freaky Friday switch

Note: I decided to approach today’s blog topic in reverse, by starting with the DOC’s influence on how I treat people with other chronic conditions and then moving on to a Freaky Friday switch (we have been asked to select another chronic condition that we would have in exchange for our diabetes).

Being part of the DOC has been a huge benefit to me. I did not know anyone with diabetes, except for my father and we live in different countries. Until lately, I had no personal interaction with anyone with diabetes. I learned by lurking in various diabetes fora and reading the T2D blogs that I could find. Really, I got more from the DOC than it ever got from me.

Although the DOC and being diabetic have their contributions, how I treat people with chronic conditions (including myself) was and is principally molded by personal experiences with family and friends who have different forms of cancer. Thus, instead of a Freaky Friday switch with another chronic condition, I want to introduce you to three individuals with whom I would have no problem trading places with. They are at the top of my list of heroes, and I want you to know what they have taught me as they face their cancer.

Who are they?

First, my mother, Rosita (or Rosie to her friends). This would be a very tricky switch as she passed away in 1997 after a ten-year battle with breast cancer. When she was diagnosed in the 80s, the internet as we know it today did not exist and everyone, including women, considered breast cancer shameful. Breast cancer was a hush-hush topic no one talked about. My mother bucked this shame nonsense, and told everyone who listened that she had breast cancer so that she can get information that could help her live longer for her children. She was also not stingy on sharing knowledge. She taught me not to live in fear of breast cancer, although every research emphasized my own risk simply for being the daughter of a breast cancer patient. She very early on chased away my “breast cancer hypochondria” as I imagined every lump in my body to be cancer. She never forgot to smile and laugh, to remain curious and interested in life, and to be kind to others. Breast cancer was there, but she owned it.

Second, a neighbor and friend, Yumie. She is a woman in her early 30s who owns an izakaya (Japanese pub) in our neighborhood. Before she even hit 30, she was diagnosed with lung cancer. She is still receiving regular bouts of chemo, which sometimes saps her energy and leaves her feeling ill. But I have not heard her complain. I have not seen her wallow in self-pity. I’ve not seen her angry at the cruel joke life played on her – she never smoked. She always greets everyone with a beaming smile and enthusiasm, even when she is exhausted from her chemo session the day before. She actively blogs (in Japanese) to share her experiences and encourage others. Lung cancer is hanging on tenaciously but she is stubbornly fighting back.

Third, my husband’s friend, Peter, who is in his 60s. A few years ago, he was diagnosed with leukemia. He underwent chemo which zapped the cancerous cells in his blood. But after a couple of years, his kidneys failed (a risk of the chemo, something which he was aware of). He needs regular dialysis now. But he is as buoyant, optimistic and playful as ever. He jokes a lot about his circumstances. When his dialysis was reduced to a manageable two or three times a week, he and his wife continued to travel. They even managed to find clinics in various parts of Thailand so he can continue his dialysis as they visited the country. He is now back at the hospital for more treatments, but you would not know it if you spoke to him. His voice may sound tired, but his friendly and jolly mischievousness remains. He may have leukemia but leukemia does not have him.

I will be very proud to step into their shoes and be them for a Freaky Friday. My worry is not for me but for them – I wonder what they will learn from me.