The Diving Bell and the Butterfly is a cruel film.
If I should get totally paralyzed and lose my independence, do I want to live? If I have a choice, what would I do? I thought it was no brainer. I would certainly choose to end my life.
Then, my friend, Maria, was diagnosed with ALS. It is a cruel disease. She had been independent and lived alone. She didn’t have close family except for her elderly mother. She lost her mobility quickly and became dependent on friends. Within 6 months, she was admitted in a hospital and had to make a decision. She had to choose. If she chooses life prolonging measures, she would be bed-ridden for the rest of her life, which she wouldn’t know how long, and would have to depend on public assistance. She wouldn’t be able to move, eat, nor talk. She would have to wear a diaper, breathe through a respirator, be fed via a gastrostomy feeding tube… All of us, members of volunteer care team of her friends, thought it was no brainer. Nobody would be able to take care of her forever. One of her friends had a mother with ALS. She begged her mother to choose to live even in locked-in condition and she now regretted that. It’s cruel, she said.
Maria couldn’t make a choice for a long time. Eventually, she chose not to. She was admitted to a hospice and passed away peacefully in a couple of weeks. (So I was told.)
It’s no brainer, isn’t it?
It was until I heard a story about a nurse. I don’t remember where I heard or read, but it totally changed my perspective. The story was told by a husband of a nurse, who became paralyzed or immobile. When she was healthy, she had always told her family she would choose not to receive any life-prolonging measures.
She once happened to be at the scene of a serious accident. The injured person needed medical attention. As a nurse, she could tell he would surely be fully paralyzed, worse would stay in coma, or brain-damaged, and for a moment she hesitated to give an assistance to save the life. Of course, as a nurse, she provided necessary help and that person lived, with the predicted consequence. Since then she thought about her moment of choice again and again, and she concluded that she wouldn’t want to live in that condition.
So when it was her turn to choose, her husband and her children were sure that she would say no to life prolonging measures. She didn’t and they were surprised. They respected her choice and took care of her for the next several months.
Then, one day, finally she said it was enough.
What her husband said hit me hard. It’s not a question of if you want to live. It’s a question of if you want to see tomorrow. It’s not that she wanted to live in that state of being for the rest of her life. She just wanted to see tomorrow. She wanted to see her husband and her children smile tomorrow. She wanted to see the sun rise tomorrow.. She wanted to feel the air, she wanted smell the rain, she wanted to feel the warmth of sun, tomorrow.
Do I want to see tomorrow?
When I am seriously/clinically depressed, tomorrow does not exist. I am in a timeless state of pain. I become pain. I desperately search for the way to stop the pain, which lasts forever, because time stops when I am in major depression. We only are in now and here in hell. (That’s quite zen, isn’t it? ) So only thing I can think of is how to stop being myself. A depressed person doesn’t have tomorrow. That’s the tragedy.
So I constantly ask myself, ‘Do I want to see tomorrow?” And I am glad my answer was yes yesterday.
Somatic Awareness 