Rupture and Repair Are The Textiles of a Human Mind

Learning how to repair, learning the truth of its effectiveness, was fundamentally lifeaffirming. I had been doing it mostly since childhood, not prone to feuds or imagining I have an enemy, but still held a superstitious belief that some people can’t change, or that they won’t care if you come for repair.

My most profound experience of repair was with a surgeon. From 1980 to 2003, I received all care through one of the most effective clinic settings possible. With their own unique, complex, multi-disease patient care, the care is effective, thorough, and correct.

While processing a first organ transplant, my physician and I negotiated an approach to care for me. My preference was to do a test, biopsy, or imaging scan immediately. If he would order the biopsy, I would tolerate him wanting me to try prednisone one more time(it’s cope-ium, but they really need you to do it). We came to trust one another explicitly.He eventually gave me his home phone number. When I promised I wouldn’t call for no reason, he laughed and said his primary concern was that I wouldn’t call him.

We made a set of deals regarding the drug for the transplant that was scarring my kidneys rapidly. My request was that I would try switching to a newer drug that didn’t have as much research as Prograf (to be clear about the unknowns of the time, Prograf didn’t have a name yet and was called FK507) if the physician would agree to hospitalize and treat a rejection episode at its first sign. This added efficiency around having pastoral and paternal conversations about the best philosophy of risk and reward and true costs. Cutting deals lets the doctor scratch their conservative itch with my obvious non-protocol body while also allowing small risks that would help me sleep at night.

The new drug failed. It was very apparent within three weeks. He declined to consult about it with the physician in the city where I was living for school. Declined, declined, declined. On day 24, after an acute onset of physical duress, he agreed to have me transported by an air ambulance to be placed in the transplant ward, two states away.

Looking back now, the air ambulance produces a warm feeling in me, followed by grief. That air ambulance was the last place I ever felt completely safe. I was 21. It was the last hours of my faith in the systems we use uncritically. I remember the panel of lights for instruments, the two paramedics dressed like absolute bosses in jumpsuits, the darkness of a night flight. The dim monitors and oxygenated airflow put me into the trance of knowing I was currently in the best possible hands. If it was possible to save it, this was the place that would make it happen.

Terrible mistakes were made during my intake. A Fellow that didn’t have a solid grasp of the field he devoted himself to, did my entire intake. He put me down as having diabetes insipidus instead of diabetes mellitus. Diabetes insipidus is a pituitary gland cancer. Diabetes mellitus is the diabetes you hear about. This was a pancreas-kidney transplant unit.Their entire careers were focused on helping people with diabetes mellitus live longer and circumvent complications. It would be as shocking as going for a breast exam and receiving a prostate exam. It was that stunningly incompetent. He failed to order the biopsy, then after a day ordered it, but did not mark it STAT. Three more days passed before we finally got the result, and it was stage six rejection—non-recoverable, too late to treat.

I went into some sort of psychological shock. I was devastated by the loss of the organ, but I was deeply, deeply, deeply disturbed by the incompetence—immutable male confidence in the face of overtly poor work manifested in the flame taken to my future. The degree to which their confidence was not related to outcomes shook my faith in medical minds forever. There was no objectivity. No honesty. No accounting for abject failure.

They assumed a position that made it extremely clear they had been speaking with the legal department and came into the room with the scent of fear.

If that organization cannot produce consistent and ethical responses, nothing can. I was lost. And deeply afraid, and in a strange kind of mourning.

I no longer trusted hospital systems at all, even though I would turn out to need eight more operations. If a doctor cannot abide by their own word, they should not be in medicine.

Six years later, I went in for my third transplant at a new facility. The physician from the second transplant center I attended in life was still there and would be performing my third transplant. It was a perfect match on all six markers and had ideal antibody cross matching. It was an excellent setup.

I sat prepped in the bed for an hour, then three hours, then six hours. A woman ahead of me bled out during the surgery before me, and they had to reconstruct an artery. Her surgery was close to 18 hours. In the meantime, my organ was sitting in an Igloo container. It’s that pedestrian and that genius in the same room.

When they rolled me in, I was unsettled. It’s too long for an organ to wait. My surgeon opened me up and then began the long process of navigating and clipping and detaching the parts of my abdominal cavity that had merged after the last surgeries. Due to the amount of scar tissue, it takes hours to even get to the place in the cavity where they attach the pancreas to the bladder.

Dr. K worked and worked. I woke up the next day feeling great. It took much longer than normal to realize something was wrong by looking at the faces gazing at me. Eventually, within a few days, someone told me Dr. K was concerned about the pancreas having grey tissue as he closed me. I couldn’t really process it because I’d developed a kind of pneumonia associated with transplants. Anti-virals were dumped in for three days. On the third day, I couldn’t form short-term memories because of oxygen deprivation, but I felt way better. I could breathe, and the chest rattle sounded better. Within 24 hours of that, I was in a medically induced coma due to a SARS response that combines sensation of drowning and the constriction of suffocation.

After I came back down from the ICU, I was informed about what had happened. No one would tell me plainly.

Ten days after the coma, I lay listening to the whirring white noise of an IV pump and oxygen mask when Dr. K knocked and asked to speak with me. What he did next altered my fundamental access to trust in others.

This grown, healthy, brilliant, and successful physician did something no one on earth would advise. He sat on the bed, met my eyes, and told me what had happened. He stated he needed to tell me something. I got the impression that what I chose to do with it was my call. He plainly and without equivocation stated he had me open on the OR table. The surgery took a very long time due to adhesion scarring (it’s like trying to cut cartilage with a tool simply too small). By the time he was sewing in the arteries to the new organ, it was visibly clear the outer tissue was grey. They debated what to do, ultimately leaving Dr. K alone with me on the table.

He said he sat for an hour before closing me, thinking about this operation in the context of the other organs I had received. He thought about what I would say. And he nailed it.

He knew I would say, "Close me up and let's gamble.

He thought I may be mad at him.

I was unimaginably grateful to him.

He chose me, at great personal risk. And then he gave me all the information I could use to win whatever case I chose to bring. A hardened chamber in my mind where I stored the rational inability to feel safe with any human suddenly filled with air.

I still can cry when I think about it.

My faith was restored. He saw my mind’s most critical need, and honored it. He chose transparency, and offered me consent.

If someone told me I could sue him for $30,000,000, I would decline without hesitation.

What he gave to me—the value of it—is not measurable. Not quantifiable.

I still walk in it’s light. Every day.

Grace is real.

It can’t be earned.

It was a gift we received at the same time in the same room. Source unknown.

I love him. I’d burn the world for that man.

He kept me whole when most would have chosen fear.