Eulogy for Johanna

NPC Grief monument, Rock Creek cemetery, Washington DC 1915

My mother, Johanna, died on Thursday, September 17, at the age of 84. She was the gentlest soul, perhaps even sometimes a bit too much so. I don’t say that just because I’m her son. Her gentleness and self-effacing demeanor have touched many around her during her lifetime.

Johanna suffered from a condition named Sjögren, an auto-immune disease that attacks the body’s moisture glands. 90% of patients are female, and external symptoms vary from for instance dry eyes to dry mouth. In the past few years, Johanna needed to have gum in her mouth at all times, including when she slept.

Because all internal organs need lubrication too, the main, though unseen, damage takes place inside the body, and the one big symptom is a debilitating fatigue, to the point where the patient can’t do much of anything anymore and ends up in bed for ever longer periods of time. There is no cure, and it’s a progressive disease. It can only get worse.

Johanna, a former nurse, saw it all coming and wanted it to end, with her dignity intact and in control of her own destiny. But her GP refused to assist her in this. The GP’s knowledge of the affliction was clearly lacking, and it doesn’t seem as if she read up much on it.

One caveat: if we had known more about Sjögren at a sooner point in time, we would have done something the GP never even thought about: chelation, cleansing the body from heavy metals, which are often behind auto-immune diseases.

As it happened, we did send a hair sample to a US lab, but by the time the results got back, it was already too late. Johanna didn’t want to try yet another set of pills to swallow. She had made her mind up. And she was probably right, the damage done was already too severe by then.

Since the GP refused to help her let go, Johanna decided to take things into her own hands as best she could. Two months ago, she simply stopped eating (she also stopped taking all her medicine, but that just made her feel better, for all I can tell).

Turns out, she was a strong woman, delicate as she was, in more ways than one. Her first strength was in taking the decision to simply stop eating, and persevering in that. Her second strength was physical: the body refused to give up for two whole months.

During that time, I took to spending ever more time at her house -I had been taking ever more care of her for a number of years-, including now sleeping on the couch at night, in case she needed help. Which was ever more often.

In a very fortunate accident, the Automatic Earth’s Nicole Foss had come to see me in Holland, from New Zealand. Nicole and I had intended to go to Greece, where I had been in early summer, to help -more- people there.

That never materialized. Instead, Nicole helped me take care of Johanna, in the most unbelievable way, sleeping on a mattress near Johanna, and getting up several times a night to help where help was needed. Myself, and the rest of my family, owe Nicole a deep debt of gratitude for that, and for as long as we live. If you wonder why we’ve published fewer articles lately, you now know why.

In the last week, Johanna’s condition weakened rapidly. After the GP had prescribed a third anti-nausea drug late last week, this one named dexamethasone -the first two did nothing-, her mind ‘went away’. According to the GP, there was no connection between the two events. I know better.

During the two months, Johanna had come to rely on Dormicum, a heavy sleeping drug, to at least get some sleep. On Monday, the GP decided to administer this in an IV kind of fashion. Johanna died four days later. Without two much pain, and without too much of her dignity gone.

But I’m still left wondering why we won’t allow people to decide about their own lives, including the end, provided they’re in full possession of all their mental faculties. Johanna was, until a week ago. Johanna would never have committed suicide, she wanted the medical establishment she once belonged to, to help her. They didn’t.

I don’t know that I should get too much into our relationship, other than to say we’ve always been very close, and understood each other very well on an emotional level. Even when I lived thousands of miles away, there was always contact every few days, so I would know she was doing alright. And when she no longer was, I came over here.

Johanna will be buried on Tuesday, September 22, alongside my father, who died many years ago.

There is one last thing that goes through my mind, and which has been there for a long time now. I can’t get out of my head that while Johanna wanted to die, but couldn’t, only after a long struggle, the children who drown on a daily basis in the waters between Greece and Turkey, far away from the eyes of the world, do not.

They fight an equally hard struggle, but to live, and many lose that struggle. That seems even more unjust, and deprived of human morality and kindness, than my sweet mother’s struggle. She would have gladly given her life to save even just one of them.

It’s a good thing I made sure she never saw the pictures of the body of little Aylan Kurdi, lifeless on the beach near Bodrum. It would have burdened her so much. But for those of us left here, we need to make sure we are aware that there are many Aylans, every day, and that we are the ones who let them drown. And we need to make sure that stops.

Sleep softly, Johanna. I love you.