Once upon a time, there lived six blind men in a village. One day the villagers told them, “Hey, there is an elephant in the village today.”
They had no idea what an elephant was. They decided, “Even though we would not be able to see it, let us go and feel it anyway.” All of them went where the elephant was. Everyone of them touched the elephant.
“Hey, the elephant is a pillar,” said the first man who touched his leg.
“Oh, no! it is like a rope,” said the second man who touched the tail.
“Oh, no! it is like a thick branch of a tree,” said the third man who touched the trunk of the elephant.
“It is like a big hand fan” said the fourth man who touched the ear of the elephant.
“It is like a huge wall,” said the fifth man who touched the belly of the elephant.
“It is like a solid pipe,” Said the sixth man who touched the tusk of the elephant.
They began to argue about the elephant and everyone of them insisted that he was right. It looked like they were getting agitated. A wise man was passing by and he saw this. He stopped and asked them, “What is the matter?” They said, “We cannot agree to what the elephant is like.” Each one of them told what he thought the elephant was like. The wise man calmly explained to them, “All of you are right. The reason every one of you is telling it differently because each one of you touched the different part of the elephant. So, actually the elephant has all those features what you all said.”
“Oh!” everyone said. There was no more fight. They felt happy that they were all right.
My mother told me this story while I was in Austin and she was in El Paso. The phone laid on my bed, her voice through speakerphone so my boyfriend could hear too. She said that everyone sees different parts of the elephant, my dad, but no one sees the entire picture. I finally understood her argument. My sister, my nieces, his doctors, me, we all saw different parts of my father and had our own perspective, but only my mother knew the whole story.
My father has Alzheimer’s and leukemia, which causes the death of his red blood cells leading to anemia. Every time he gets his blood drawn, his red blood cells are low. This prompts his blood specialist to order a transfusion so his labs can be normal, this is the standard of care.
Here is the thing about the standard of care, it’s only part of the elephant. What his doctor doesn’t understand is that my dad was finally manageable, he was actually the sweetest I’ve experienced since the onset of his Alzheimer’s and had more moments of lucidity than I remember him having in a long time. He wasn’t running away or refusing to take his medicine, he wasn’t belligerent or threatening to kill anyone or himself or constantly on edge and pissed off or having hallucinations like he was after the first transfusion. As an adverse effect of his treatment, he was often uncontrollable, a completely different person, not someone I would want to spend too much time with. And yet, my mother had to spend 24/7 with him. Even taking him to day care became impossible, as he was belligerent with the staff, would run out the door, and occasionally get physical. One time, the scariest time, my mom said that he didn’t recognize her and just kept walking, angrily until he almost got hit by a car. She had to call my cousin, a police officer, to come help her reel him back to calm and finally get him home safely.
His triggers during certain stages of the disease were unpredictable. He would get angry if there was a new person in the house or he would runaway at the sight of a suitcase or the sound of a shower. I had moved back home for seven months and wrote about it constantly. My father did and acted in countless other ways that I did not witness, but my mother did, day in and day out, she lived the entire elephant.
So when my momma told me his blood count was low again and that his doctor wanted to transfuse him, I panicked. The only thing that had changed when he had his first 180 was the transfusion. I’ve done the research, there are no studies on blood infusions and worsening delirium. But this case study, a real life example of what could happen if you make a life saving change in someones biology or chemistry, was too palpable to ignore. And though this is anecdotal evidence, it doesn’t take away from any of the validity.
Many of my colleagues will say I’m crazy, that its just coincidence that my father regressed after the transfusion. I don’t really care what others say. I care about what the caretaker says and when I called to check on them yesterday after the transfusion, sure enough, the devil had taken over. I asked to talk to my dad on the phone and boy was he a poopy pants, total 180 from the night before when he said “life is good sweetheart, you just have to believe that and keep on chuggin” and “of course I’ll take care of my girl” when I asked him to take care of mom. This morning was no better. He didn’t sleep until 1 am and just went up and down the stairs acting manic and restless, which means my mom was left sleepless as well.
In medicine, we see the parts of the elephant, every day with every patient. We’re not privy to their home environment, their relationships, every single one of their past traumas, their diets or cheat days. We base our treatment or intervention on populations of people, on scientific studies in medical journals, rather than on the individual. And to be fair, some patients expect this from us, they demand we ‘fix’ them after we get minuscule glimpses into their life and disease.
I think its time we start evaluating the entire elephant. As it impossible as this may sound in the current healthcare market, it’s imperative to the system and to any change that we want to happen. Perhaps we ask our patients what they think is manageable and possible from the toolbox that we have available and then engage and empower them to make those changes, rather than getting upset with them when they are non-compliant.
So I’m going back home in a few days to have this exact conversation with his doctor. To ask him to reconsider the standard of care for this particular individual, my father. That the standard of care that improves his physical body is destroying his mental, spiritual and emotional one. Not to mention the toll it is having on my mother and her quality of life. If his doctor wants to question this possibility, then I will ask him to spend a few day with us at home and then see what he thinks.
Wish me luck guys, I’m challenging the system once again. I have no expectations, I only have hope.
How many times have you made an a diagnosis or decision on just seeing part of the elephant?
Thank you for reading.