A long winter

by Jane Joritz-Nakagawa


Chitsu: Japanese for vagina

Colostomy: plastic bag for feces; April’s rectum and anus were removed due to treatment for gynecological cancers

Do-inaka: Japanese insulting term for being in the sticks and backward

Gaiin: Japanese for vulva

Gaijin: foreigner (shortened form of gaikokujin which translates literally as person from an outside country; “koku” is country and “jin” is person; “gai” =outside)

Gan: Japanese for cancer

Gold’s Gym: same chain as outside Japan

Imin: Japanese for immigrant

Kinoshita Home Health Center (fictitious name): a store catering to the needs of elderly and disabled people selling such things as canes, stoma goods, adult diapers, wheelchairs, etc.

Linpa fushu (Japanese) or in English lymphedema: Swelling due to removal of cancerous lymph nodes, in April’s case, or other causes

Nakama: person with whom you feel close or belonging to the same group as you

Omni: fictitious name of a private health club in Japan

Omoiyari: empathy, traditionally valued by Japanese

Peristomal: skin area surrounding a stoma

Rehabili shoes: A type of orthopedic shoe made in Japan, usually made of soft fabric or vinyl with Velcro closures and available in unusual (in Japan) sizes to accommodate people with foot problems/injuries/disabilities

Shogaisha: person with a disability

Stomagairai: outpatient clinic staffed by WOC (wound ostomy continence) nurses

Takokuseki: of a variety of foreign nationalities

Tenji block: raised Braille blocks on streets to help people with sight impairments navigate outside (tenji= Braille in Japanese)

Urostomy: plastic bag for holding urine (April’s bladder was removed due to treatment for gynecological cancers)

The year hadn’t begun well.  April’s urostomy leaked twice while working out at the gym.  She had itching again around her colostomy stoma.  Her lymphedema was now in both legs, though milder in one leg than the other.  She had to treat both legs with compression garments or bandages during the day and night.  And twice she had fallen down after catching her toes on tenji block.  They weren’t so much as falls as the feeling of her body slamming hard into concrete. She worried these falls would worsen her leg lymphedema.  Her occupational therapist had warned her about this.

April dreamed that she had fallen asleep in the part-time teacher’s room and missed her class.  When she went an hour late to the classroom, of course her students were all gone.  She took the bus home but fell asleep and missed her stop.  She got lost in the bus terminal and started to panic.  Then she woke up.

Today was almost the last day of classes for the fall / winter term.  April was tired as usual but enjoyed listening to her students give their final speeches.  Her students were so young and energetic.  She felt lucky to have a job she liked so much.

She went home by bus, and then made a quick lunch out of brown rice, tofu, and leftover vegetables.  After eating, she went to the gym as usual.  She never thought about whether she wanted to go to the gym or not.  Not going was unthinkable to her.  She was afraid that her out of control body would simply be further out of her control if she did not at least try to whip it into shape.  Since her operation 3.5 years ago she could not control her bowel movements or her lymphedema.  Her posture had changed dramatically.   She told herself she had become a fanatic about going to the gym.  But she kept going.  Following routines helped control a feeling of panic that had overtaken her ever since her first cancer diagnosis years ago.    Routines were soothing.  Feeling that at least some parts of her body looked healthy, such as her arms and upper abs, gave her at least a little feeling of pride or confidence.  When she was a young woman she had promised herself never to lose her figure, even into old age.  Her parents had stayed slender until they died and her father often bragged about how he could eat anything and never gain weight.  Before her mother got dementia she had bragged about how little she weighed (98 pounds).   April had wanted to remain attractive.  But since her final surgery all her clothes buying was geared to hiding what had happened to her body after cancer treatment.  She wore big tunics and Aline skirts or wide gaucho pants.  She often wore bright colors and bold patterns, chosen to try to cheer herself up.  She had found online a swimsuit that hid her ostomy bags and the scars on her legs. It was a blouson type top with a skirt bottom.   April was relieved she could go swimming without revealing everything that had happened to her to strangers in a pool.  She loved to swim, although she was not particularly good at it.

During her workout she had searing pain in various parts of her body but knew it was best to ignore these.  When she finally got to the end of her workout she was dizzy from either over-exertion or hunger.  When she got down on the mat to stretch she felt the world spinning out of control around her and she saw yellow spots everywhere.  But she forged on, determined to stretch every part of her body to the best of her ability before returning to the locker room.

The locker room at Omni, her gym, had once been an ominous place.  When  she first joined the gym the staff neglected to tell her certain rules.  She had been asked to take off her shoes in the gym area on the day she went to inspect it before deciding whether to join the gym or not.  This indicated to her that the gym was a clean area, people had to bring clean shoes to wear in the gym.  Because she could hardly walk without shoes on because the pain was so great to do so she limped along as quickly as possible, feeling desperate to put her rehabili shoes with custom made prescription orthotics inside back on as soon as possible.  She told the staff later that she would need to wear clean shoes in the locker room as well because of her foot problems.  They said that was OK.  But Omni members scolded her for wearing shoes in the locker room.  She explained that she had received permission to wear her shoes in the locker room and that they were clean indoor shoes, never worn outside.  But members continued to treat her harshly and finally an Omni staff member told her to prepare a second pair of clean shoes to wear in the locker room so that members would leave her alone.  Some members also complained that she took too long taking her shoes on and off in the entrance to the locker room.  But April had a big bandage on one foot and she had to sit down to get her foot in and out of shoes.  Even though she did this as fast as humanly possible, and all her shoes had Velcro closures, some members would complain.  One young woman scolded the back of her head as she had already left the shoe changing area.  She began to feel nervous every time she had to take her shoes off at Omni.

Monday at the university she ran into another teacher, Sally.  Sally asked “Are you still going to Omni? I am going to Gold’s Gym now.”  “Why did you quit Omni?” asked April.  “The women were so mean, I got sick of the place.”  “Really, I have had bad experiences too.  I thought maybe Omni is do-inaka  and people are allergic to foreigners there. “ Sally said “Oh no, they hate everybody!  Once I saw a woman push a severely disabled [Japanese] man out of her way because she wanted to hurry on to her class.  He almost fell over.  I was frightened for him.  They fight with everybody, too.  I like Gold’s Gym.  I can relax there.”  April’s mind focused on the word “disabled.”  She had wondered if some people were mean to her there because she was non-Japanese or because she was disabled, or both.    “I did break some rules without knowing” April explained.  “No, it’s not you. It’s them! Come to Gold’s Gym” Sally replied.  “I’ll think it over!” replied April, who decided to stick it out at Omni as everybody wasn’t bad, it wasn’t crowded, and she didn’t want to let bullies get the best of her.

Sally’s comment had made her feel relieved.  April had blamed herself mostly for the bad things that happened to her.  But maybe it wasn’t all her fault at Omni after all.

The itching came back.  She took an allergy pill.  Fortunately within 30 minutes or so she felt better.   Although it did not always work out this way.  Sometimes she simply had to endure it.

Last January Dr. Kimura had helped her with her peristomal itching.   Although Dr. Kimura was not a dermatologist, she was a friend and an MD. April’s stoma gairai nurse was of no help.  After showing Dr. Kimura photographs of her stoma that she had on her mobile telephone, Dr. Kimura had said “Yes, this looks really bad.  What are you using on the skin other than the appliance?” “Nothing,” April said.  “I was using a steroid lotion and steroid pill but they no longer work and the lotion hurts to put on.  I brought the one I got at the cancer center and the bottle of the one they gave me.  Are they the same thing?” She held the bottles out to give to Dr. Kimura.  “They are the same drug, but this one is far more concentrated” said Dr. Kimura.  “Stop using steroids.  Try an allergy pill, like Desalex.  Take lots of zinc.  Try to “air out” the skin.  When changing your bag don’t put the new one on right away, give the skin a chance to be exposed to air.  And try to find a protective lotion to put on the skin” said Dr. Kimura.  The lotion the stoma gairai nurse had recommended to her irritated her skin and the bag wouldn’t adhere at all when she used it.  April went to Kinoshita Home Health Center and found a different protective spray.  She used the spray together with a moldable ring that she stretched around the opening of the bag.  The bag adhered nicely once the spray had dried leaving a sticky surface.   She started to see improvement after following all of Dr. Kimura’s advice and using these products.  Dr. Kimura was an angel put on this earth to help her.   What would she do without her?

Although this year did not have a perfect start, it was much better than last winter where she endured unbearable itching for months on end until Dr. Kimura helped her.

On Saturday April had visited with her friends Steve and Judy.  She was grateful for their company but also at times felt strongly how much she had changed since her cancer treatment, changed in a way that Steve and Judy had not experienced and maybe would not be able to understand or be interested in hearing about.   She worried about alienating her friends with talk about cancer or disability but also felt alienated because she did not share much of that side of her life with anybody now that the cancer survivor group was online only due to the coronavirus pandemic.  April did not like online meet-ups, only face to face ones.

On her way home she stopped at an electronics store to buy batteries.  About eight people were waiting in line at the cashier area including a man in a wheelchair right in front of April.  When it was finally time for the man in the wheelchair to check out, he didn’t budge.  April said in Japanese in a soft voice to him, “It looks like a cashier has opened up over there.”  “You go ahead” the man replied.  “Really?  Why?” April asked.  “Can’t get through” the man said.  There was no way April would take this man’s turn at the register because people were so wrapped up in themselves they did not make space for a man in a wheelchair to move forward.  Where was the omoiyari? “Make way” she yelled harshly in Japanese.  Everybody simultaneously jumped out of the way and turned to look at the loud gaijin.  The man made his way to the cashier.  Quickly, another cashier appeared and waited on April.  For some reason yelling in her loud gaijin voice made April feel extraordinarily happy.

April was an outsider in so many ways.  Although she had lived half her life in Japan, she would always be a gaijin.  She had not taken Japanese nationality, not wanting to give up her American passport.  There were no words in Japanese to describe people like April.  In her birth country, the USA, you could be an Asian American, recent immigrant, African American, Hispanic American, Native American.  The expression American Japanese did not exist in the Japanese language.  You could say Japanese American (Nihon kei Amerikajin) but not American Japanese (Amerika kei Nihonjin). People were divided simply into Japanese or foreigners.  But in April’s mind, a foreigner was not an immigrant; the word foreigner in English indicated to her a person that has no intention of staying or is recently emigrated.  Most of the time she didn’t feel like a gaijin, but that is how she was seen.  Why am I not an imin she wondered.  On television was a program about Shin Okubo, a part of Tokyo where there were many gaijin living.  Instead of calling it an immigrant community or ethnic neighborhood, they used the word “multi-nationality” (takokuseki) to describe it.  Was it the case that none of them were Japanese?

April was fascinated with words. She learned via the cancer support group that ordinary women did not know the Japanese word gaiin but they knew the word chitsu.  When she announced to breast cancer patients that she had first had gaiin gan  (and later chitsu gan) they looked at her blankly as if she had said “gaijin gan”.  She told this to Sally who said: “That’s what you should say, you have gaijin gan!!” They had quite a laugh about it.  Ordinary people did not know what linpa fushu was either.  If somebody at the gym asked her about her heavily bandaged left leg, she had to explain that she had cancerous lymph nodes removed — but who talks to strangers about cancer?  It was an awkward problem.  Sometimes she thought the women were too nosy but other times she thought maybe they are trying to be friendly by starting a conversation with her using her left leg as a way in.  One woman talked for an hour about her own health problems after asking April about her leg.  Another woman apologized for asking when April mentioned the word “gan” which showed omoiyari.

Even before she became legally disabled, or began to think of herself as a shogaisha, April had thought of Japanese disabled people as nakama in that they were minorities or outcasts, too, just like April.   She missed the conversations she used to have with an acquaintance in her old neighborhood.  He used a wheelchair but had travelled the world.  April had not travelled much because due to her fibromyalgia and now due to her two stoma and lymphedema travelling seemed too cumbersome and difficult.  The last time she had been on a plane she got so sick she returned home early.  It was hard to make disabled friends in Japan, unfortunately.

April stopped at her favorite grocery store.  She had received a free plant from this store one day as a gift.  It looked shriveled with one yellow leaf, more like a dying weed.  But she took it home and watered it almost every day.  Hiroshi, her husband, had told her to only water it when the soil was dry.  It had grown into a big plant with many flowers.  This was the first plant that April had not killed inadvertently.  When she got home she looked at the plant, checked the soil with her finger to see if it was dry, then watered it.  She was grateful that the plant looked so healthy and strong now. Maybe this would be a good year after all?  But who knew.  Life was continually in flux.   “Healthy and strong” sounds good but can anybody achieve it?  Not necessarily.   And what’s waiting around the corner nobody knows.  April was still getting cancer screenings every six months.   Her sister had died two years ago from cancer and now her brother was diagnosed with terminal cancer.