Sep 202015
 September 20, 2015  Posted by at 11:47 am Finance Tagged with:

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.

Home Forums Eulogy for Johanna

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    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
    [See the full post at: Eulogy for Johanna]

    Golden Oxen

    My condolences Sir.

    The loss of a parent is a particularly painful affair. Hopefully the sadness will pass soon and be replaced by fond joyous memories of your wonderful Mother.


    Dear Roel,

    There is no better thing you and Nicole could have done for your mother than to be there next to her when she needed you the most.



    Illargi, my condolences for your loss, that was a very touching article. I can only imagine the pain your feeling.


    I am so glad Nicole was there.

    Very strangely, I was humming “What’ll I do” yesterday, as I repotted a cactus I has been certain was dead- but it started growing in spite of no water – with my 10 year old daughter. She asked what it was, and I sang it for her.

    English needs some new words and phrases for this situation. I want to tell you I truly feel, and grieve, with you; but there really are no words to convey it; only phrases so worn out they have no impact.

    Take care.


    Dear Ilargi, I am very sorry. You and your mother have been in my thoughts these last months. I cared for my parents to their last breath. It is such labor of love and such a blessing for us and for them. Be gentle with yourself. It takes more time to grieve than we ever expect. Blessings to you and your family.


    Tender but clear-eyed, and very moving, Illargi. This combination is a large part of why I read you frequently. I deeply appreciate your thoughts about allowing those who suffer to end their own lives. My mother took her own life 3 years ago. She was in a lot of pain for the last year and she had told her children that she wanted to end her life. I guess we thought she was exaggerating, but very few would say that without meaning it and my mother had never said anything of that kind. My sister and I both felt after her death that we should have honored what she said and taken her to Oregon where she could have died with those she wanted present and with dignity and a minimum of pain.
    I hope your words will help others think about these issues with compassion. No easy answers here.

    John Day

    I am so proud of you both, Ilargi and Nicole.
    You have entered the suffering of another human, and remained there in body and heart, which is the true load-sharing, not superficial signals of condolence. Those are to relieve the “well-wisher” of any actual responsibility.
    I know the difference, and I am truly appreciative when I see this form of realized human compassion
    You will never fear your own deaths…


    Your care-giving of your mother by both you and Nicole, epitomizes each of you. I think you both have that wonderful human capacity of gluing people together with your love of individuals along with humanity. Your beautiful eulogy tells of your mother’s bravery and your knowledge that she would have given her live for any of those refugee children – you take after her as you must know.

    If anything saves humanity as we go in to the dark days of societal collapse, it will be people like you and Nicole who have the best of human traits – caring and community cooperation.

    My thoughts are with you as you mourn and heal from this hard time. I can still weep for my lost loved ones and when I do, it heals me more. I wish you those healing tears.

    Hugs, Glennda


    Sympathy for you Ilargi in your time of loss. Your responsible, kind, supportive behavior is the greatest demonstration of love.


    Deepest sympathy my friend.




    My deepest condolences and sympathies for your loss. I will keep you in my prayers during this difficult time.

    May her soul rest in peace.


    My condolences and sympathies for your loss.


    Peace and love to you all.
    May her doctor at some point in the future have an epiphany about life, suffering and death and dignity.


    So sorry for the loss of your mother. A very touching eulogy.


    Memory Eternal.


    Condolences Illargi, all the best for you in the future.
    The wheels come off a bit after ones mother passes over, time!

    V. Arnold

    May I offer my condolences Illargi; my parents spent the last 6 months of my father’s life in my home, where he died of a virulent form of leukemia. He had a young, progressive, female doctor who gave him the means to opt out; which he finally did.
    The best to you going forward…


    Oh Roel – my tears are streaming… for you. She is safe now and pain free. There is continuity in consciousness. She is still with you and you will be reunited. Everything she taught you and the love she showed you, is still within you. I feel that I know after having met you and Nic in Florence (and Nicole again in Vancouver) and I love you both. You are showing us the heart of compassion and we will stand by you in sympathy and love. Continue to take your love of humanity to the people – it honors both you and your Mother. I know she is very proud of having a son that is willing to put his life at the service of others. It is what we are here to do… Service to Others. May you find comfort in the love of family and friends and know that your contribution to humanity does not go unheeded.



    You are the kind of son that all people hope for. My thoughts are with you and your family.


    For Ilargi,

    ” Do not stand at my grave and weep
    I am not there. I do not sleep.
    I am a thousand winds that blow.
    I am the diamond glints on snow.
    I am the sunlight on ripened grain.
    I am the gentle autumn rain.
    When you awaken in the morning’s hush
    I am the swift uplifting rush
    Of quiet birds in circled flight.
    I am the soft stars that shine at night.
    Do not stand at my grave and cry;
    I am not there. I did not die.” Mary Elisabeth Frye


    My condolences, Ilargi. Remember the good times and cherish them. Make her proud going forward.
    While many may disagree, I believe you, Mom, and a whole lot of other people will meet up again, except the next time will be in much better circumstances. If I’m right in that, it will be a great day.


    My condolences to you in what I know must be a very sad time.


    My condolences, Raul.


    My sympathies Ilargi.

    A few years ago, I lost my mum after her lengthy illness. I know it changed me. You only get one mum, and it sounds like you had a truly good one.


    My condolences, Roel.

    It’s good that you knew her so well, only a few such family relationships are so blessed. More frequently, we don’t know what we have until it’s gone.

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