My brother experienced severe pain. A LOT of pain. Pain was what sent him to the doctor where he received his death sentence. So from his diagnosis until a few hours before he died, pain was ever present. I can hear people's minds running, "if that was me, put me out of my misery. I don't want to suffer." Nobody wants to encounter that kind of pain. Even our dad, in the midst of fighting his own grim battle told me that he will not suffer like that. He will elect to die. But my brother did suffer. A large part of y'all may think that was due to a failure on the part of the medical establishment. Maybe. If so, then I would share some of that blame. I accept that if it's true but I believe it to be more complicated. I replayed the scenario over in my mind. Over and over and over. His grimaces, his walk hitched up short by the tumors present in hips, his limited range of motion of his shoulder, his grunts at the end when he could no longer talk. I see these in my mind's eye like they were yesterday. I'll carry those scars with me the rest of my life. My own pain, though of a very different beast.
At every doctor's visit, he had to rate his pain from a 0-10 scale. 0 is no pain. 10 is the worst pain of your life. It's a standard way of assigning a quantification to a subjective quality like pain. He NEVER rated his pain a 10. I finally asked him, "what would it take to be a 10? You look like a 12 from where I'm sitting."
His reply? "I think of some soldier who has his leg blown off and is bleeding out. That's a 10 to me. I don't have that so I'm not a 10."
"Wow." That's the only response I could muster. Trying to explain how that soldier would be high on adrenaline and shock to blunt the response was useless. He was clearly in severe pain. But not a 10 to him. It was that simple. When a pain spike hit, he would reach for tylenol, freakin' over-the-counter tylenol at "extra strength". He'd do that before reaching for morphine.
"That's like shooting a bb-gun at a tank," was my clinical advice. "I take more when I get sore from backpacking."
Not wanting to fail him, I strongly suggested that he try an antidepressant to assist in managing the pain. There was data at the time that some of them could blunt musculoskeletal pain, similar to the type of pain that he had. Cymbalta has subsequently been approved by the FDA for pain, regardless of depression status. His response to me? "I don't want to take a happy pill."
So why was he in pain? Did the doctor fail him? Did I fail him? I don't believe so. The reason was two-fold. First, he disliked medicine. He took so many pills who could blame him for getting sick of all the side effects. Pills, pills, and more pills. But bigger than that, he never accepted his diagnosis. He never reached that stage. He refused to. When someone close passes, there's a natural inclination to only remember the good things about the person and gloss over the difficulties. There's a temptation to turn the memory into a myth. The eulogy can become a mythology.
But my brother was human. He was a good man, but as human as the rest of us. He had his own weaknesses and shortcomings. Pain was a result. Was it strength that kept him fighting and consequently in pain? Or, was it weakness at an inability to come to terms with his impending death? Harsh words, perhaps. I feel I earned the right, though, to be able to ask them. In all honesty, I don't think it's that black and white. He was in pain because he fought. He fought because he wanted to live. He wanted to be with his family. He also couldn't accept the inevitability of his diagnosis because he wanted to live. Because of that, he was gone from his family a lot while he was receiving treatment. Some of that treatment at the end would have been considered medically futile, in my estimation. But he still did them. Lots of shades of gray in there. Strength. Weakness. Will to live. Acceptance of death. Do those terms even mean anything anymore? Perhaps they are two sides to the same coin.
So I ask those same questions of myself. What would I do? How much pain could I endure? How much strength would I have? What weaknesses of mine would be exposed? What would any of us do? And could anyone be faulted for making their choice? After witnessing his struggle and suffering, I am not so quick to make a decision for myself, or for anyone else. For him, it came down to this. He chose pain in exchange for wanting to live.