'When You Get to Heaven, You Can Eat'

On November 7th, 2023 I received a call from my dad. I had not heard from my dad in 15 years.

We were estranged for seemingly no other reason, really as far as I can tell than we just didn’t have anything to talk about. It was not for lack of trying on my part, but with zero reciprocation from my dad, I fell away. Unfortunately, by not speaking with my father, I sacrificed the opportunity to speak with my younger brother, Michael. Michael was intellectually disabled and had lived in a group home situation since 1986 after my grandmother passed away. She cared for him after my parents divorced in 1979. The complexities of how this came to be were basically due to the challenges of a special needs child that were beyond the scope of my mother’s ability and my father’s need to continue to work for the fire
department. So slowly our family split apart. My mom and me, my dad and my brother. I loved my brother, deeply. I spent much of my childhood defending him from bullies when we would be out in public. I have scars on my nose from fights and I remember one boy punching me HARD in the stomach when I told him to stop making fun of my brother at the bowling alley. Such was life in the rural south. My brother went to a school for special needs children, participated in the Special Olympics he could not speak language per se but mostly had broken speech combined with sign language and gestures as his method of communication. He was a unique and special human being. I am a neurologist and I’ve never seen a patient similar to his presentation. He had been born, seemingly normal, met all of his developmental milestones and then started to regress severely and seemingly overnight at the age of 2. The things that brought him joy were magazines, NASCAR, and Elvis. He had an infectious laugh and was the embodiment of love. On November 7th, 2023, my brother left this Earth.

I was blindsided. The first message came through as a text from my dad. He referred to himself by his first name and indicated that he needed to talk to me. I called and said “By ‘Frank’ you mean ‘my Dad’”? He sheepishly said yes and then went on to let me know that my brother had just passed away at the age of 50. He tried to explain how things had transpired over the last 2 months. It was interesting as a physician to listen to my father, who has a high school diploma, try to explain medical jargon. On some level, I have to admit that I felt a little guilty as I reflected on the number of times I’d been told by my professors to not use technical language when speaking with family members. I was seeing the receiving end of a grieving father trying to understand and make sense of how his son had died. Ultimately, he asked if I could call the physician who took care of him. I let him know I’d be happy to. I was surprised when the number he gave me turned out to be the cell phone of the last doctor to care for my brother. Another tinge of guilt, I never give out my cell phone to patients, honestly, I couldn’t even imagine. Perhaps this was a unique situation. The physician said he was an internal medicine attending and that he was rounding but would call me back. I later found out that he was a first-year family medicine resident and thought his deception was a little concerning, but it explained the cell phone. He didn’t know any better yet. Once we spoke he told me that Michael had been admitted for intestinal obstruction, transaminitis and jaundice. He was unable to eat and developed ascites. The primary medical team caring for my brother found his disability and inability to speak very challenging and he admitted that it was only late into his hospital course that he realized that Michael could use sign language. I thought about how scared and alone my brother must have felt in his hospital room when my dad wasn’t there. Also, he mentioned that the group home had told him that Michael’s favorite and in fact one could argue most important thing in life was to be able to eat. He had been receiving total parenteral nutrition (TPN) and was unable to take anything by mouth. Ultimately, he had to undergo a paracentesis to remove fluid from his abdomen and the cells came back positive for cancer, adenocarcinoma.

At that point, the team started to consider palliative care and hospice for my brother. My father being a reasonable and practical man, did not feel that subjecting Michael to any further procedures or treatments would prolong his life in any sort of meaningful way so he wasn’t going to press for heroic interventions. Gastroenterology had been consulted due to the small bowel obstruction, but they could not do any procedures due to the tenuous nature of my brother’s condition. The resident told me that he witnessed an interaction between my brother and my father where my brother asked when he went to heaven, if he could eat. My father responded “Yes, Michael, when you get to Heaven, you can eat”. It was not long after that, Michael closed his eyes and passed away. I pictured him sprinting towards the pearly gates expecting to see Golden Corral on the other side. On some level, Michael’s passing reminded me of the concept in Yogic traditions of “mahāsamādhi”, the act of consciously leaving one’s body. I was relieved to hear that his passing was quite peaceful, it truly seemed as though he knew that he was ready to go and left. There were so many gifts that I was given from my brother, his final gift to me, was grace.