Title: "To Those Studying Rehabilitation." Written by Hirokatsu Kikuchi (03/06/2025)

Title: "To Those Studying Rehabilitation."Written by Hirokatsu Kikuchi (03/06/2025)

I first heard the word "rehabilitation" when I was fifteen. I have congenital muscular dystrophy, a disease in which the muscles in my limbs atrophy. By the time I was in the upper grades of elementary school, I had contractures in various joints, my Achilles tendons had shortened, and I began walking on my tiptoes. By the time I entered junior high school, the condition had progressed to my chest, and in my second year, I lost consciousness due to respiratory failure caused by oxygen deprivation and was rushed to the Intensive Care Unit (ICU) by ambulance. Fortunately, after I regained consciousness, rehabilitation with a physical therapist (PT) began in my bed to maintain my existing muscle strength and prevent further joint contractures. Along with my treatment, the menu was gradually increased, and after I moved to a general ward, I sometimes went to the exercise therapy room for training. During the month I spent lying in the ICU, my legs and lower back withered and I became unable to walk, but I recovered to the point where I could move around in a wheelchair using the remaining strength in my upper body. It was then that I met Mr. Shibayama. For a patient like me with a progressive disease and severe disabilities, one cannot expect the visible training results that therapists might hope for. I think it is a case where setting the purpose and goals of rehabilitation is also difficult. Amidst that, Mr. Shibayama strove to enrich communication with me and supported my physical recovery and mental independence with a menu that incorporated recreation. (1/11)

I think the catch and swing practice that incorporated baseball, which Mr. Shibayama had been familiar with since his student days, had the effect of expanding my chest cavity and strengthening my upper limbs. A soft boomerang that would return skillfully even when thrown while lying in bed was one such example. Because I was cared for by Mr. Shibayama, I did not lose my interest in sports, which I had given up on, and was able to enjoy them. He also created opportunities for play, such as leather crafting and candle making, at the site of his colleague's occupational therapy (OT), crossing the boundaries between therapists. In this way, I believe that clinical settings have an important role in performing rehabilitation not only for the body that has encountered sudden illness or accident, but also for the mind. (2/11)

It has been thirty-nine years since I had a tracheostomy to open a hole in my throat and began using a ventilator. I have been receiving home medical care for thirty-three years. In the 1990s, the system for medical care was not well-established, and we were required to pay out-of-pocket for all medical equipment and related consumables, such as ventilators and suction devices for removing phlegm. Every piece of equipment I saw for the first time was expensive, and the total expense was enough to buy a foreign car. Currently, ventilators can be rented from medical institutions, and some consumables are now provided through the management fees for home respiratory therapy. The number of clinics supporting home medical care has also increased, and a system has been established where doctors can make house calls for even minor changes such as a light cold or stomachache. (3/11)

When I started the kind of home medical care I have now, it was not a pleasant situation at all, and I started it reluctantly. I had originally been seeing a pediatrician at a university hospital, but when I became an adult, I transferred to neurology. Before I could get used to the new environment and doctors, I was encouraged to receive home medical care as if I were being kicked out of the ward, because the internal medicine ward did not have the luxury of beds for admission and discharge like the pediatric ward did. However, the university hospital did not have the budget or system to provide a ventilator, and I was asked to purchase one at my own expense. I only have unpleasant memories of being forced into a situation where I had to buy a ventilator with a deadline for how long I could stay in the hospital. When I think back to that time, I felt pathetic about my illness and circumstances, and I had nowhere to vent my anger. People with severe chronic illnesses or intractable diseases have been seen by pediatricians since they were old enough to understand. Therefore, an easy transfer based on aging causes confusion not only for the patient themselves but also for the parents who are caring for and watching over them nearby. (4/11)

In the 1970s, it was said that the lifespan of a muscular dystrophy patient was around twenty years, and they would not reach the age of adulthood. I think my body's disease symptoms are progressing slowly due to aging, but I never thought I would live this long, as home medical care has become widespread due to the miniaturization and weight reduction of ventilators. It is not all good to have one's life prolonged. For example, after I entered elementary school and was thrown into group life, I realized the differences in my body compared to my classmates and the things I could not do, and around that time, I was taught as a child that muscular dystrophy, for which there is no medicine or cure, means dying at twenty, so I was not a child who dreamed of a future beyond that. When I became a junior high student and could see the progression of the disease on my own skin, I stopped studying and spent my days wasting time in a self-abandoned manner. I studied at a correspondence high school for college-bound students, but I graduated without any hope for the future and without finding any meaning or purpose in continuing my studies. However, I did not die as they had told me even after passing my twentieth birthday. (5/11)

Honestly, I still have mixed feelings about not dying when I thought I would. The reality that I had not designed a future after the age of twenty tormented me with anxiety about what would happen from then on, and with regret and despair that I should have studied properly if this was the case. The specialized doctors at the university hospital might not have thought that the development of medical equipment such as ventilators would progress to this extent, and that even if it did not lead to a cure for muscular dystrophy, there would be ways to prolong life. The materials you use as a reference to think about something, not just the large amount of clinical data collected from disease cases, are mostly based on past experience. Even with that, it is not easy to predict the future. Reality is sometimes painful, harsh, and sad for everyone. Truly, things beyond your imagination await you. Difficulties will also arise. For that time, it is important to assume various situations, think about what you can do, and prepare. There is nothing in life that is a waste. (6/11)

To me, who did not turn out as I had imagined when I was a child, the doctor at the neurology department I had just transferred to asked, "What do you want to do when you go home and start home medical care?" While I was acting tough, thinking I had no obligation to answer someone I had just met and who didn't know anything about me, I also didn't have any dreams or hopes that I could answer immediately. It was Mr. Shibayama and doctors who were neither the head nurse of the ward nor my attending physician who watched over me as I was feeling stifled at that time, and their casual communication. That it is never too late to start studying. That I should continue to draw pictures. These three are words that I still keep in mind as my life's work. When home medical care began, I first advanced to the Open University of Japan, a correspondence university, and dabbled a little in philosophy, psychology, and sociology. I also participated in the activities of patients with the same disease and their families, and had encounters with volunteers. Now, at the recommendation of a volunteer I met there, I have been serializing cover art for the newsletter of a certified NPO for thirty years. (7/11)

As I have talked about so far, I lack the will to live, and I have spent my time far from anything like being desperate or fighting against intractable diseases or disabilities. There are things that don't go as I want, and there are many things where even if I wish things were a certain way, the social system and technology have not caught up. However, the media to disseminate that current situation and raise awareness widely in society has become familiar with the advent and spread of the Internet. Today, from blogs and bulletin boards to SNS (Social Networking Services), the methods of expression are various. So I also vent my weaknesses, and when I can't do anything, I also throw out an SOS. By visualizing the situation and feelings I am currently in through messages, if the cause of my worries and problems becomes clear, I think I can indirectly raise awareness of the issues of illness and disability, even if I cannot find a direct solution. It takes time, but if you don't throw the ball, it will never come back. (8/11)

My home medical care as a person with severe physical disabilities due to congenital muscular dystrophy is elderly care by my parents who are in the latter stage of old age. I experienced the Great East Japan Earthquake (2011) when the ventilator stopped during a twelve-hour power outage, and I learned that it is important to have multiple lifelines in an area that has no interaction with neighbors, just like an isolated island on land. I receive medical and welfare services such as house calls from clinics, visiting nursing, visiting dentistry, visiting rehabilitation, and visiting care from nursing care providers. Each contract is supported by the government and public health nurses through a consultation support specialist under the Comprehensive Support for Persons with Disabilities Act. However, for a long time, the lifespan of muscular dystrophy was around twenty years, so now that we can prolong life by wearing a ventilator, patients are searching for independence support measures for middle-aged and older people through trial and error. The reported issue of middle-aged and older people shutting themselves in, the 8050 problem, is not someone else's affair, and I am also a party involved. I receive public services based on the law, and there are visits from medical professionals. However, there is no immediate means for me to go out or run away for no reason. I am facing the same anxiety as if I were looking in a mirror, watching my parents age day by day. There is nothing more cruel than the reality of watching parents age day by day, more than the symptoms of an intractable disease that withers the whole body. It is very exhausting. Independence support for middle-aged and older people with muscular dystrophy has just begun. If the number of people whose lives are prolonged due to advances in medical equipment such as ventilators increases more and more, various patients will start better home medical care efforts in their respective places. I want students to be interested in the reality of their various medical care lives. Life is not just about living a long time. If you don't have the feeling that you are using your body and time in this very moment, it is very empty. The reason you can regret that you should have studied at that time is because there was an environment where you could study at that time. The reason you can regret that you should have told your parents at that time is because your parents were healthy at that time. There are not a few things that I think I was late to notice. Employment support for middle-aged and older people who shut themselves in can sometimes be applied to people with severe disabilities. There may be distance learning using the Internet, remote work that can be done without going to the workplace, and cases where creative talents can be utilized. Since individual experience is an irreplaceable asset, there is also work for lectures as I am talking to you all. For that, support and advice from physical therapists and occupational therapists who can observe the patient's illness and disability, as well as their personality and abilities, are indispensable. If everyone could receive advice like the one I was well-guided through during rehabilitation by Mr. Shibayama, and if they could find even one thing to extend their existing abilities, they could also connect to supporters in that field. The success of Paralympians is a representative example of that. Their cooperation involves a wide range of people, including competition instructors, trainers, technicians who make prosthetics, wheelchair manufacturers, and companies that make uniforms, shoes, and equipment. In the world of haiku that I continue, there are also exchanges born with teachers and fellow poets through SNS. I hope to connect that more to the QOL and income of home medical care. (9/11)

Up to this point is the story before COVID. I would like to touch on the changes in home medical care for muscular dystrophy patients wearing ventilators after the government issued a state of emergency due to the spread of COVID-19, limited to my own example. I refrained from visiting the university hospital once a month. House calls from the clinic went from every other week to once a month. I continue to have visiting nursing and visiting rehabilitation once a week. I am striving to prevent infection and maintain my physical strength while keeping my daily rhythm. In 2022, when the state of emergency in Tochigi Prefecture was lifted, outpatient visits to the university hospital became telephone consultations. Due to the influence of COVID, ICT, which means communication via the Internet, has progressed. Home medical care is being coordinated using "Dokodemo Renrakucho" (Anywhere Contact Book) operated by the Tochigi Medical Association. Prescriptions received at the university hospital can now be issued during house calls, and pharmacies now deliver medicine, eliminating the burden on my elderly mother to go to the pharmacy to pick up medicine. Such efforts are refused as temporary measures specialized for COVID, but I want the system that reduces the burden on patients receiving home medical care to continue in the future. In the world of haiku, online haiku gatherings have increased, and I am participating in haiku gatherings in various places where it was difficult for me, a person with severe physical disabilities, to travel. Turning the topic to the media, remote work that allows disabled people to work while staying at home and social participation in fields that have not been of interest until now are attracting attention. Cafes where robots operated remotely by disabled people serve customers. In the world of e-sports, there are also cases where athletes with severe physical disabilities sign professional contracts with companies. On the other hand, the food and beverage industry, such as bakeries and cafeterias operated by workshops where people with intellectual or mental disabilities work, continues to refrain from business or stay at home due to the influence of social distancing, and shops cannot be opened, and the survival of the parent organizations and NPOs is also in jeopardy. The environment surrounding disabled people is also diversifying. Based on the reality of each person who has been staying at home for a long time, support that is close to their possibilities is required. (10/11)

What I can do is continue thinly and for a long time. Even if I am a "three-day monk" (someone who gives up easily), if I remember, I will start again from there. For that, it is sometimes necessary to face my weak self and have the flexibility to act while consulting with the remaining abilities and physical strength even if the disease progresses. I have also aged and cannot act recklessly like I did when I was young, but I try to keep the curiosity of a teenager or someone in their twenties. I continue to write satirical cartoons and haiku. Masaoka Shiki was a haiku poet who contributed to the development of modern haiku, but he was originally a newspaper reporter and wrote articles and essays looking at society with his own eyes during the Russo-Japanese War. I also respect his life and want to leave behind creative results while breathing the air of the times. For people, creative work is a shortcut to gaining a sense of fulfillment and achievement. If you are a physical therapist (PT), you can help with social reintegration by setting big goals with light exercise as a trigger. Occupational therapists (OT) can start with simple manual work and propose things that lead to a reason for living, and can be close to and encourage patients. Everyone who knocked on the school gate and I who talked to you today are a once-in-a-lifetime encounter. I send my cheers so that when you continue your studies and become medical professionals, you can meet patients who can help each of you grow as a person. (11/11)

"To Those Studying Rehabilitation." Playlist
1/11 Zensen ni Tsugu / Sayonara Poésie https://youtu.be/wzHT8lMHFFM
2/11 Kiezokonai / Flower Companyz https://youtu.be/1JM3p1MLPfw
3/11 Fuyu, Kyou, Tower / monobright https://youtu.be/EyFhm8Orhe4
4/11 Lost One no Goukoku / Reol https://youtu.be/ZOaerF49taY
5/11 Ikiru ni Tsuite / Akippara ni Sake https://youtu.be/cli9ArqC1Us
6/11 Rirura Riruha / Kaela Kimura https://youtu.be/AJMEZB2S23g
7/11 Only Wonder / Frederic https://youtu.be/oCrwzN6eb4Q
8/11 Overdrive / Cidergirl https://youtu.be/PTkCydC2VF4
9/11 Hito toshite Jiku ga Bureteiru / Tokusatsu https://m.youtube.com/watch?v=3snUBxnWPoI
10/11 Kansengen / Kankaku Piero https://youtu.be/Nvfiu2ABLVI
11/11 Otona no Iukoto wo Kike / NakamuraEmi https://youtu.be/Tohr3D3a_1Y

#Profile. Hirokatsu Kikuchi (@kikutitg) Congenital muscular dystrophy. While receiving home medical care with a ventilator, he serializes satirical cartoons in the "Tochi-Comi SDGs Tsushin" of the certified NPO Tochigi Volunteer Network (@tochigivnet). He respects Masaoka Shiki and continues to write haiku. Included in "Shibaha" Outlaw Haiku (Kawade Shobo Shinsha). Born in 1971. Lives in Utsunomiya City. webhero@hotmail.com #Shibaha #Tategami no Kai #Tokyo Koya #Sato #Samishii Yoru no Kukai