On September 17, 2011, I woke to find my wife in the bed beside me, blue and not breathing. I denied it for as long as it took me to rush to put the pulse-oximeter on her finger. nothing. it stayed black. I put it on my own finger to make sure it was working, and it was. I tried it on her finger again. Nothing.
She was dead. There was no going back, no changing the past. I had to live with all the choices I had made for her over the past few months. This would come close to killing me.
Miriam was a hot shit writer, but she could no longer write. She didn’t have the concentration or the manual dexterity. The didn’t have enough breath to use a dictation program.
She would watch movies and TV shows on DVD all night long while I slept. Every hour or two, she would wake me to change discs for her. She didn’t want to sleep. “I might die in my sleep,” she said. “I don’t want to die.”
That’s the thing, she didn’t want to die. She also didn’t want to go through massive pain and discomfort. As her Mitochondrial Disease took more and more capabilities from her, she became more frightened.
We tried to put off the inevitable. We had a tracheostomy performed, so she could be on a ventilator most of the time, especially when sleeping. The problem was, the operation left her feeling as if she was not breathing at all. She became convinced she could die any minute. She would scream at me as best she could when I left her side, even for a few minutes. “I’ll be dead when you get back.” She said. I tried to convince her that with the ventilator doing her breathing, she literally COULDN’T stop breathing. It didn’t matter. She was convinced she was dying.
The medical staff didn’t help. Nurses when asked if she was dying would become evasive, or say that she might be. Doctors had no solutions, and actively blocked our efforts to seek expert help outside the hospital. Allowing us to do so would expose their own incompetence, after all.
When I did go away, leaving the computer in front of her, I would sometimes find she had posted using my facebook account that she was dying and needed help. I felt helpless.
Eventually, we had the tracheotomy tube yanked, and allowed the hole to close over. We went home, and along with some hypnotherapy, Miriam felt like she could breathe again. Of course, her breathing was no better than before, and it would continue to grow weaker.
(To be continued).