Dying is not Giving Up
I am seeing a woman who has a progressive terminal illness. She is 80 years old and has outlasted her prognosis by 10 years. Since I started seeing her 3 years ago, I have seen the steady decline of her physical being. In the last 6 months, the cognitive decline is now evident too.
She tells me how she could not get out of bed last week. She was too tired, too sore and this depressed her. She tells me, " I thought, this is it! I am now totally dependent on others", her greatest fear. She looks at me baffled because today she is feeling better and she does not know why. Her energy is very hard to predict. She is very out of breath walking the 10 meters to my office. She needs a walker, at times she needs supplemental oxygen, but not today. This is a good day. She tells me how she starts to bake cookies and what used to take her 30 minutes is now a 2-3 hour process followed by frustration from her husband because by the end of it, she is totally wiped out and he knows he must clean up after her.
She tells me how she simply must do something with her day to feel good. She says all her life she had been productive and a busy bee. She tells me how she is a fighter and she will keep fighting. But this fighter is dying. And to me, this is a process just as extraordinary and powerful as the process of birth. But we rarely talk about it. We do not see death in these terms.
No matter how hard she fights, she is at a point where breathing, walking, and talking, the acts of living tire her out completely. Gravity weighs on her and makes its presence known in a way I can not relate to, yet. I want to talk to her about this, hold space for what this is like for her. It never dawned on her until I suggest it, that she needs those days of exhaustion to rest, so she can have a good day like today. Her body is signaling her with a wisdom that we would be remiss to ignore, let alone fight.
When talking to her, I am aware of my own dying. In any given moment, I am made aware that we are all dying and living at the same time. We do not have one without the other. It is rare that I am face to face with someone where her dying is outpacing her living, and I am filled with awe.
My patient does not enjoy dying. She does not want to be tired and weak. She is frank about how she is living more for those around her. When she thinks about her death, she is overcome with anxiety for her husband and what he will do when she is gone.
In being with this patient, I see that living for others can extend one's life. I have come to believe in a life force that connects us to our loved ones and to humanity that is beyond scientific comprehension extending into the spiritual. My patient will say as much and tell me how grateful she is for her family and friends. But she suffers.
Dying is not giving up. My patient would suffer less if she agreed with this. Just like engagement is not endorsement and acceptance is not agreement, dying is not giving up.
We have lost the ability to let death naturally claim us. My patient will see a number of specialist physicians ranging from respirologists to physiatrists to neurologists for her advancing weakness. She is taking an experimental and costly treatment to extend her life. She spends days recovering from the side effects of this treatment. She seems resigned to this while acknowledging that what she is going through is irreversible. No one, except I, have used the word dying with her. No one, not even the patient herself seems interested or curious to explore what this experience is for her. But I am, I can't help it. There is no acute psychiatric illness going on, no, what is taking place is something far more universal, and far more meaningful. What is going on deserves a witness, even when she may not have the words.