One year infirmed in USA & Japan: differing practices in stroke rehabilitation

Laurel Kamada
Hirosaki-shi, Aomori-ken, Japan

 

The author mother visiting her in the
Intensive Care Unit after the stroke. 

After surviving a massive hemorrhagic stroke five years ago, I spent half a year in stroke rehabilitation hospitals in each of two different countries. I stayed in hospitals and nursing homes in the United States before my husband and son brought me back home to Japan where I spent another half a year in a stroke rehabilitation hospital before finally returning to our house. During this difficult year of infirmity in these two countries, I experienced different practices of healing and wellness, which I would like to bring to light with the hope that a better understanding of failures and oversights might help to improve holistic care.

People infirmed for a long time in hospital-like facilities are called residents in the US and users in Japan. In Japanese the word user nuances a more temporary stay like a shopper in a department store; whereas in The US, the word resident nuances people who live there for much longer periods of stay or those who live there until their death. The idea in the US is that residents should be safe and happy in facilities, just like at home. During my stay, I was encouraged to join outings and activities, consume delicious foods, watch weekly movies, and enjoy volunteers’ manicures. A common American belief is, “As life is short, we should try to enjoy it whenever possible.”

But for me, being infirmed long term was also boring and intimidating. An aide often pulled covers off of my body in the rain-dampened chilly Seattle morning, shouting in a high-pitched shrill voice, “Oh my Gawwwdd!”

Back in Japan, I was glad to enter a good hospital with a higher staff-to-resident ratio that was covered by my insurance. In Japan, users are expected to be passive and quiet. Pain should be endured stoically and users should accept staff decisions without question.

Some staff members were interested in me as gaijin (foreigner, outsider) because I had white skin different facial features and body shape. Some hoped to learn English from me. The director at one facility always greeted me, rain or shine, by loudly proclaiming, “It’s fine day today, isn’t it?”

A Japanese aide in another facility brought in an English phrasebook and showed me “useful” (but laughably salacious) phrases for men to use hoping to score women in English- speaking countries.

The philosophy in Japanese rehab facilities is that the best way to heal is to passively lie still. The patient should leave everything to the staff to manage, wait patiently for their turn, eat light meals, take bitter medicines, and submit to tests stoically. They are commonly expected to be patient and passive; sleep or watch TV. One should not try to do any work or study. Internet use and Wi-Fi are unthinkable, and cell phones are banned. In contrast, all facilities where I resided in the US had Wi-Fi.

A photo of the author’s family after her stroke;
the author is the third from the right.

Hirosaki Stroke Rehabilitation Center Hospital in rural Japan has natural hot springs for bathing. In large baths, we found ourselves in deep, warm water that took the weight off of our stressed limbs, relieving pain tremendously. In the hospital where I was infirmed in Japan, I also loved the twice daily hour-long rehab sessions with professional therapists. Half the time was spent in body massage before having us do walking or other exercise. A well, every meal included healthy, delicious, light Japanese food. I was able to lose the twenty-five pounds that I had gained while infirmed for the same amount of time in American facilities.

Harborview Medical Center Hospital (hereafter, HMC) in Seattle, Washington, had a top-quality, intensive rehab program that would be a good model for facilities anywhere to emulate. One thing that made it fantastic was the integration of my team of people; the main drawback was its high cost. However, there were many good practices at HMC that could be accomplished anywhere at low cost. For example, weekly meetings were held with my team, my family, and me, to discuss goals, achievements, and problems. In Japan, staff insisted meetings be attended by Otousan (literally your father, but it nuanced my husband). I had to tag along behind Otousan to meetings, and everything had to be OK’d by him, disallowing my own decision making.

People who could not physically be at my meetings at HMC were included in conference call arrangements. As we sat around speakers the first time, my brother called in by cell phone. The next time, he again joined by cell phone, while my husband joined by home phone from Japan. A professional Japanese/English interpreter was also called in.

Another useful aspect of care at HMC was the use of staff introductions and blackboards. During the first few days there, each member of my team individually entered my room and introduced themselves to me in a friendly manner. They then wrote their name and role on a large blackboard displayed in my room. Japanese hospitals could easily use blackboards.

In American nursing homes, staff (many were immigrants from Pakistan, The Philippines, Africa, and India) all wore name tags, with two self-selected names. One Pakistani woman wore the nametag Israel. Months later, she wore another nametag: Teresa. Residents had two names (I was Jane Doe), but we were usually referred to by our room numbers (I was #3). It was very impersonal; I was often mistaken for another person.

Institutionalized gossip was a problem in my experience in the US. At the nursing home the doctor compiled a detailed report about me, which was sent on with me to HMC. Private misinformation about my husband and me that was no one else’s business showed up in the doctor’s report; it had no place in a medical report to be sent between institutions. The doctor who wrote the report never asked me about it, making it thus mere gossip that he had heard from an aide. Since that report moved between institutions, it was institutionalized gossip. When the report was later sent to Japanese institutions, it became trans-national institutionalized gossip.

The report also repeatedly mistakenly referred to my lack of appetite, which was thought to correlate with depression. It was depressing being falsely constructed as depressed. The doctor had falsely assumed I did not have an appetite as I left much uneaten of giant meals designed for large American men double my body mass. I had worked hard to maintain a healthy weight and felt unhappy being forced to overeat. I rejected being put into boxes of what is typical among stroke survivors within medical discourses of (in) sanity and (un) wellness. I have always been mentally stable; I have never been suicidal; I never shed a tear over the calamity.

Another good practice in America at HMC was information arranged in notebooks. I was given two binder notebooks with information about strokes, staff photos, and empty pages to fill in myself, where I got started on writing a memoir manuscript. Writing reduced stress, relieved boredom, and helped me to organize my thoughts. Facilities anywhere could easily and effectively provide notebooks at low cost.

Being infirmed in hospital facilities in Japan and America has given me insight into excellent practices that could be borrowed and integrated into rehabilitation programs in other countries. Some of these practices include an integrated intensive program, weekly meetings, staff self-introductions, blackboards, and notebooks.

 


 

LAUREL NUDELMAN KAMADA, retired lecturer Professor (Tohoku University: Sendai, Japan), is presently a freelance writer. She has a PhD in Applied Linguistics (Lancaster University, England). She serves on the editorial board of Japan Journal of Multilingualism and Multiculturalism. Her most recent book is the award-winning book (co-winner: IGALA book prize for 2010-2011) entitled, “Hybrid Identities and adolescent girls: Being “half” in Japan.” (Multilingual Matters, 2010). She has published widely in areas such as: bilingualism, multiculturalism, marginalized (gendered and hybrid) identities in Japan, Feminist Post Structural Discourse Analysis, theoretical and methodological approaches to identity, mixed-ethnic & gender identity in Japan.

 

Winter 2018  |  Hektorama  |  Personal Narratives