Becoming the wife of a man who was 'disqualified as a human'...

When I say 'disqualified as a human,' I don't mean Dazai Osamu's literary work. This is the story of my husband, who was suddenly branded as 'disqualified as a human,' and me, his wife.

December 20, 2010, early morning

My husband suffered a subarachnoid hemorrhage due to a ruptured aortic aneurysm. The first hospital he was taken to by ambulance refused to operate, claiming their operating room was full. But by then, the pupil in my husband's right eye was already dilated. At the time, I

'A dilated pupil means death is near'

had no idea about things like that. In front of my husband's condition and me, who was crying out 'Please save him,' the emergency doctor used a computer to find an available operating room and a surgeon who could perform the operation at a neurosurgery department within the prefecture.

'Ma'am, I found one! Just one! I'll contact them right away!'

Thanks to this doctor's quick response, my husband was transported by ambulance to a second hospital far away in the prefectural capital. 'If his heart stops during transport, please give up on him.'

It was truly a life-or-death gamble.

Despite everyone's worries, my husband's heart never stopped during transport or surgery. A 'clipping surgery,' where the base of the cerebral aneurysm is clamped with a titanium clip, was successful once, but the next morning, he suffered a second major hemorrhage, and another emergency surgery was performed. Having overcome two major surgeries, my husband saved his life, but he was left with a 'persistent vegetative state' (so many kanji, haha).

He returned to me as what is commonly called a 'vegetable.'

March 2011

After the 'three-month' period of acute care ended, my husband and I were chased out and transferred to the next convalescent hospital. Even though it was a transfer to a convalescent ward, it didn't mean his condition had improved. Simply put, modern surgical treatment could no longer be provided, so we were pushed out like a block of agar to the next medical institution, saying, 'Okay, next.' I begged the hospital staff over and over again, 'Please let us stay just a little longer.'

However, based on the 'medical reform system' proposed by former Prime Minister Junichiro Koizumi when he was Minister of Health and Welfare, no patient, no matter how seriously ill, was an exception. To avoid misunderstanding, I should say that Junichiro Koizumi is one of the politicians I like.

'No reform without pain'

When I was healthy, it was a political reform I didn't even pay attention to, thinking, 'What's that?' It was only after my husband became seriously ill that I realized we, as a couple, had fallen squarely into that 'pain.'

I am still deeply grateful to all the staff at the acute care hospital. After all, they saved my husband's 'life.' I couldn't cause trouble for a hospital to which I owed such a great debt. Because if we stayed, the next 'life to be saved' might not be saved.

But even so, as a layperson, I think three months was far too short for my husband, who had overcome major surgeries multiple times.

When we transferred, my husband was a very sick patient whose skull, which had been removed, had been put back, and the swelling had just gone down. I took my husband, a seriously ill man who kept having convulsions, on a 'welfare taxi' for over 40 minutes on the highway, standing the whole time to support my husband as he kept trembling, and transferred him to the next convalescent hospital.

March 9th. It was a cold day with light rain, still far from spring. Because of his repeated convulsions, it was dangerous to even have him sit in a wheelchair. The marks of medical staples were still vivid on my husband's head, and he hadn't even opened his eyes. The faint, wheezing sound of his breathing leaking from the hole in his throat from a tracheostomy seemed to be telling me, 'I am still alive.'

I am also very grateful to this convalescent hospital where we transferred. They moved my husband, who had a large body and could have a seizure at any time, to a private room (the bed in the four-person room we were first in was too big and got in the way of other patients) and provided rehabilitation once in the morning and once in the afternoon every day.

“For patients with persistent vegetative states, please talk to them and provide stimulation as much as possible.”

Having been taught that at the acute care hospital, I spent every single day talking to him like a fool, playing music, and playing music boxes over and over again.
I learned how to administer tube feedings, and since he would naturally excrete after being fed, I learned how to change diapers.
That's right! A 'vegetative' person doesn't just lie there quietly and neatly like in a TV drama. They defecate and vomit (pardon the vulgarity).
Changing diapers was truly the hardest part. After all, I, who weighed less than 40 kilograms, had to change the position of my husband, who still weighed nearly 80 kilograms, wipe his bottom, and put on a new diaper. When he had a bowel movement, I often felt nauseous from the stench, no matter how much I loved him.
However, I couldn't bear the thought of him being exposed to others for long periods in a state that would likely be the most embarrassing for him while alive, so I desperately mastered the task.

Due to my sense of responsibility and the tension, I collapsed three times from hyperventilation attacks. I suffered from severe headaches, my legs trembled making it difficult to walk, and my fingers became bent and deformed. I learned for the first time that this is what happens to a person when oxygen stops circulating through their body.
I, the caregiver, ended up in a wheelchair myself and was transferred from my husband's hospital to another (the convalescent hospital would not provide acute care).

“People can die from stress.”

I finally understood the meaning of the words spoken by the handsome neurosurgeon at the acute care hospital.

Once I was able to get my husband into his wheelchair by myself, it became our daily routine to take walks around the hospital. From 8:00 AM to 8:00 PM, the nurses and caregivers would laugh and say, “You live at the hospital, don't you?”
At that time, I had lost the plumbing business I ran with my husband, and I was unemployed, living off my meager savings while visiting the hospital every day.

It was during one of those days, while I was pushing my husband's wheelchair for a walk inside the hospital.

“Keeping a person like that alive is a bad thing!!”

Suddenly, a loud, aged, and raspy voice echoed through the rehabilitation room.
I looked around. An elderly woman sitting in a wheelchair was staring haughtily at me and my husband from a distance.
“Huh? Could she be talking about my husband?”
(Is she perhaps suffering from dementia?)
That was my first thought.

“Keeping someone like that alive with our tax money is why our medical costs are going up! And our pensions are going down too~”

My husband and I were berated over and over again, as if we had done something wrong to the old woman.
That old woman was like a boss among the rehabilitation patients, so she was definitely not senile.

“A waste of life!”
“Someone like that should just die already!”

My husband, who was loved by everyone and was my pride and joy, may have indeed changed into a figure that others would despise due to repeated surgeries and his impaired consciousness. But I alone believed that the scars from his battle with the illness were medals of honor for winning the 'battle for life' that had returned to me.

“I'm sorry, I'm sorry.”
I apologized over and over again, and from that day on, I changed our walking route.

“I'm sorry, I'm sorry.”
“I'm sorry for being alive.”
While my husband was still alive, I apologized dozens, hundreds, thousands, tens of thousands of times.

The old woman was not wrong. It is indeed true. The government covers tens of millions of yen in medical expenses annually to keep my vegetative husband alive. Of course, I pay a few million yen myself, but...

But, but...
Old woman.

“San-chan, I got some tangerines!”
A torn supermarket bag was placed proudly in the entryway.
Inside were many dirty, unevenly sized tangerines.
As I mentioned earlier, when my husband was healthy, he ran a plumbing business.

“What? What's this?”
“Today, I fixed the plumbing at an old lady's house in the neighborhood, and when I said I didn't need any money, she gave me these instead (laughs).”
The old woman must have cut them with scissors from a tree in her garden.
“Wait, that's quite a big job! You didn't take any money?”
“Well, the old lady didn't seem to have any money.”
“Honestly...”
“It's fine! I'll work hard again tomorrow.”
That was the kind of person my husband was.

If there was someone in trouble, he was the first to reach out, and he always supported those weaker than himself.
And I have never once heard my husband speak ill of others.

Do not envy others.
Do not hate others.
Do not despise others.

My husband often told me this.
He was a man who lived exactly by those words.

Even so, when you become ill, you have to feel this much shame.

"It's because you're keeping a person like that alive that things are bad!!"

Perhaps to that old woman, my husband looked like a zombie. At the time, when I was in total darkness, those words were harsh.

"I'm sorry, I'm sorry."
"I'm sorry for being alive."

All I could do was apologize.

That's right! Back then, I resented and hated that old woman.
"What a tactless person!"
I despised her. I had perfectly managed to do two of the things my husband said we must never do.

But perhaps it was because of that terrible abuse that I was able to think,
"Damn it!"
"I will be the one to heal this person!"
and keep trying.
A long, long time has passed, and the hatred and contempt have weathered away, turning into just a bitter memory.

In the end, what was I trying to say in this long piece of writing? (laughs)
Ah, there was one thing I wanted to say.

To those currently suffering from illness, those with disabilities, those caring for seriously ill or demented family members...
I am someone who cannot do anything for you, but this much I can say loudly!
If you are going to live anyway,

please live with your head held high!!

Don't live a life of constant apologies like I did; please live proudly with your chest puffed out.

Because the "right to live" should be equal for everyone...
Yes!
There is at least one person here who received courage and energy just from the fact that my husband, who was constantly told "you shouldn't be alive," was alive.