ESLD: Holding Steady

This week marks the first anniversary of what I for many months felt was a final descent. In the course of three weeks I had a massive esophageal bleed at my mother’s deathbed, had a transjugular intrahepatic portosystemic shunt (TIPS) installed, and was hospitalized with hepatic encephalopathy.

It took until April 21 for me to stop thinking about dying and to begin to think about living. The evening of the 20th I took a half-dose (by mistake) of a new sleep drug, and I had a paradoxical reaction: I could not sleep at all. I was awake for about 36 hours, and if you have ever experienced that, you know that around about hour 32, things can start to get quite interesting. It was Earth Day, and for three hours in the late afternoon I did nothing but watch the changing colors of the green leaves at the day turned to dusk.

And the next day I felt like my brain‘s reset button had been engaged.

I hit a plateau, I guess. It’s like I had been falling, falling, falling into the abyss but then the fall was interrupted, as if I had landed on an anomaly in the walls of this abyss, some unanticipated protuberance.

This doesn’t mean I can get all together out of the abyss; eventually the protuberance will erode, and the fall resume, but it isn’t happening now.

Now I have some distance from the events of the past year, perhaps I can describe some of those psycho-social aspects of my situation.

For much of last year I felt like all my psychic defenses had been breached. I was attracted by its title to Dion Fortune’s classic Psychic Self-Defense in which she describes the effects of psychic attacks by evil magicians or spirits and means of banishing them or protecting one’s self from further harm. I felt as if I had been attacked by malevolent forces – not bad magic mind you – but a free-floating malevolence.

I think magical thinking is an aspect of illness. I’m even a bit hesitant about saying things are going pretty well for fear that the saying so will make them go wrong.

I remember a particularly bad night when my daughter was hours late getting home (she had gone to the movies; phone off, etc.). I envisioned all the worst as having happened, and that here I was thinking things were pretty bad, and the Universe was going to say, “hey, you think things had been bad before but you have no idea just how bad bad can be” – a little like when you hear some particularly stupid parent tell a child who is crying to quit or else “I’ll give you something to cry about” and is then amazed that the child cries harder still.

Then there is last-time-it is. Is this my last Thanksgiving, my last birthday, my last Christmas? It doesn’t make it seem more precious: it ruins it.

Then there is the any of us could die at any time problem. While this is absolutely true, we don’t really believe it. It is a tralse — some truth, more falsity. Sometimes I feel like responding to that observation with a counter-offering: “in that case, why don’t we switch livers?” But these is no reason to offend folks who are trying to be kind.

I neglected my social life. It was easy to do so. I think I was like the spectre at the feast for much of the year, looking as exhausted and as beat as I felt. Maybe I imagined that people were pulling away from me. Maybe they were. It is an awkward situation.

It didn’t help matters when David Bowie died and the initial reports were that liver cancer was the cause (later clarified as pancreatic that had spread to the liver). Not all people who have liver cancer are cirrhotics, and not all cirrohtics get liver cancer. But cirrhosis is a definite risk factor.

I had decided long ago that if I developed liver cancer, I was not going to fight it (in fact, I think there is little that can be done when someone with ESLD gets liver cancer). I am supposed to go every six months to see if I have developed cancer, but I decided, why bother?

I will tell you why: in March we went on a vacation, and after nine months of doing nothing, I wasn’t prepared for walking a lot. After about a half hour, I would hurt worse and worse as a pain developed on my side and radiated to my back. Of course I decided well damn, I must have cancer.

So I went in for the ultrasound and blood test to see if maybe I was wrong. And I was. But I did have a severe vitamin D deficiency.

Throughout much of the night of my 36 hours of wakefulness I watched Bowie on youtube. He lived until he died. Made an album, wrote a play.

Maybe that contributed to my change of attitude, my finding the plateau. Or maybe it takes 9 months to transition from one existence to another.

I just know that when I finally did sleep, when I awoke, I decided that today I was not going to think about My Death.

And now that has become a habit.


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