Giving Voice to Stroke Survivors part 1
Drawn by Hana Grant
My stroke
On September 6, 2021, I collapsed from a subarachnoid hemorrhage.
I suddenly felt a spark from the back of my head late at night on September 6, 2021.
It was like a spark from a sparkler running toward the top of my head. As soon as it came to the top, something popped inside my head. I felt a tremendous headache, my limbs started to go numb, I vomited, and collapsed.
I was in and out of consciousness. Fortunately my family was home, so they called an ambulance. According to my husband, the paramedics gave me oxygen with a manual ventilator pump and did everything possible to give me enough oxygen and bring back my pulse before arriving at the hospital. I was definitely dying.
The hospital was only two kilometers away.
I arrived within 10 minutes. At dawn, the next day, I underwent coil embolization surgery.
I was unconscious for the next two days, but I woke up safe and sound and received extensive care and nursing at the hospital. I was able to gradually recover. Because my cerebral aneurysm was distorted into two lobes, I had to have another operation on one of the two lobes. After overcoming various risks, I was discharged from the hospital after one month in the ICU.
After discharge from the hospital
I was discharged from the hospital with few aftereffects, but when I returned to the normal world from the white, safe hospital, the light was dazzling and the sounds were so loud that they stung my brain. I felt afraid of the world.
A week after leaving the hospital, I developed hearing loss in my left ear. I also felt that my vision in my left eye had deteriorated, and when I went to the ophthalmologist, I found that my left eye had half the vision and half the range of vision. They did not check my senses before I left the hospital.
I felt lightheaded and tired, as if I had been up all night. My blood pressure was unstable. Anxiety began to overtake me. I fell into a cycle of mental depression because my body was not functioning well.
Most shockingly, I started having speech tics and incontinence. These symptoms appeared within a month of being discharged from the hospital.
The doctors, nurses, and rehabilitation staff at the hospital did a great job of helping me but the hospital seemed very far away, even though it was just down the street. For a patient like me, with mild symptoms, there were no institutions in my area that I could rely on. At that time, I spent my days going from one hospital to another, from otorhinolaryngology to ophthalmology to internal medicine.
My ophthalmologist was very understanding and counseled me. She told me, "You are not crazy.” I was so happy that I almost cried. She told me that my brain was in a state of shock, that my nerves were overstimulated, and that it was important to regulate my autonomic nervous system.
She told me that doctors prescribe medicine even when they don’t understand the problem, hoping it will have a psychosomatic effect. She also taught me how to regulate my autonomic nervous system, which is the body's command center.
My husband realized that there are few or no doctors that treat the whole person. There are only specialists that treat specific symptoms within their area of study. There are few general practitioners in Japan. There are no doctors who can examine the whole body and provide total care. There are few, if any, counselors, psychologists and psychiatrists who specialize in stroke recovery or at least I have not been able to find any.
An otolaryngologist does not know much about the brain and a neurosurgeon does not know much about hearing, so patients often become hospital gypsies in Japan. In Japan, there is support, rehabilitation and counseling for people suffering major disabilities as a result of strokes. However, for people like me, who have no obvious physical symptoms, there is no support available. Without a doctors who can see the total picture, it is very difficult for me to understand and manage my symptoms.
After I was discharged from the hospital, I wanted to meet other subarachnoid hemorrhage survivors who had gone through the same experience. They were hard to find. I was able to talk with four stroke survivors under 50 years old, including family members of acquaintances. All of them had returned to society with few consequences.
However, when I asked them about their mental health, they told me that they had all been mentally weak, withdrawn, and depressed. They told me that it was 100 times harder after they left the hospital than during their hospitalization. I thought that the primary cause of their symptoms was the lack of understanding of their anxiety. I realized that no one understands them because there is little knowledge of how people with brain injuries feel. The workplace is especially difficult because of the struggle to gain trust after having a stroke.
Information from overseas
My American husband, lamented how the counseling and psychological care was not offered or available after my discharge. Hence, I began consulting with Marcus, an Australian Kochi resident and stroke survivor. He understood how I was feeling and gave me detailed advice on how I should treat myself during that period. He also e-mailed me and told me about his own struggles. He was able to share with me beyond words, and his advice helped me a lot.
Marcus introduced me to the Australian support network Genyus. I was amazed! All of the people and agencies were connected, and when I followed them on Facebook, they welcomed me with warmth. I was happy to see that such a world existed. I felt like I was connected to my peers from all over the world, which was reassuring, and I looked forward to reading each issue, trying desperately to understand it, even though it was in was English. However, my first language is Japanese, and after the surgery, my ability to understand English has declined and I have brain fatigue, so I began to think that it would be better if this exchange was in Japanese.
Continued in Part 2
この記事が気に入ったらサポートをしてみませんか？