It is a surreal experience. For me it started as shock. I did not eat a meal for almost two months. Lots of people were around and I kept busy doing random things. Then people go away and the random tasks are done, and it’s quiet and strange.
I chose to move forward, focusing on my son, fitness (I started running), we did a charity drive in her honor, and we focused on being more social. I have a boy to take care of and responsibilities to be met - but I think this transition is where many grieving people fall into trouble.
I’ve lost my dad and my grandmother, both of whom I was very close to. But this hit different.
This column, “No Love is Ever Wasted”, captured my feelings well in a unique way.
https://www.nytimes.com/2023/03/10/style/modern-love-no-love...
I lost my dad over a decade ago which I was close too, and a couple of years later broke up with my SO which I'd been with for well over a decade at that point.
While nowhere close to your experience, that weird emptyness sounded very familiar. Coming home from work, eating dinner alone and then just "ok, now what?". Suddenly the days seemed to have so many more hours to fill.
And that feeling when you had some fun or nice experience and you just want to share and pick up the phone only to go "oh... right". I still get that with my dad, and it still hits hard.
Her take on it was that she had hope and a chance with metastatic melanoma because she was standing on the shoulders of those before her. Basically, she had a 60/40 chance of 5 year survival. 10 years ago, it was zero.
Now, there’s a variety of new treatments in trial that will make the chances for future patients much better… there’s a customized Moderna vaccine and other immunotherapies on the horizon.
It’s cruel and it sucks but there was hope.
Jamie Anderson Felix Revello de Toro - Woman, 1965
It has been a little over a year and half since i lost my Mother(i spent the last decade living with/taking care of her) and the grief is still there. I cannot show it (because i am a "Man"), don't know how to process and deal with it but am only trusting to the passage of time to help me forget. "Human Bonding" is not mere words but is really something strong. I used to poo-poo at all sentimental emotions but now i know better through experience.
Elizabeth Akers Allen's emotional poem Rock Me To Sleep nicely captures much of the feeling - https://www.poetryfoundation.org/poems/52071/rock-me-to-slee...
I forgot to mention a very important book on the subject of Grief from the great Cicero which is rectified here - https://news.ycombinator.com/item?id=40472916
It reminds me of all the times when I was young where I thought I was deeply in love, but really I was just in love with the feeling of being loved and accepted. And my grief when that was gone was love that I could've directed towards myself where it should've gone. It took until my 30s when I realized I could provide the love that I'd been missing all my life, and only then could I be in love in a way that wasn't suffocating and borne of fear.
Calling grief maladaptive seems deeply wrong, while I both grieved and persevered through the loss and have been financially successful and am "well adjusted" and "successful" by any external observers measure, I do not think I would judge myself or anyone else who was pulled into the abyss by grief, I still doubt if living with grief was even the right choice, though I am glad I ended up in a mental state where I retained my volition to make the choice.
Loss is loss, a person who has part of their brain removed, their heart damaged so it barely pumps enough oxygen, their limbs lost or kidneys damaged... their inability to function or find joy, meaning or energy in life would never be judged as maladaptive.
I persist, that is true, but I see no moral or emotional difference between my functioning and if I was non functioning. I so repeatedly see people discount grief, mental trauma and other forms of true tangible loss as if was somehow different from other types of physical loss, but it isn't.
To call it an inability to adapt to loss is one thing, just as a head without a body could not open a door with our current technology, but I would humbly suggest that it is too far too call it maladaptive.
I loved every person I lost, due to my age for my parents I was quite literally dependent on them, and the sheer force of will required and personal self subjugation I cannot clearly say was worth it, After all, I've never met an unhappy, struggling or grief stricken man in the ashes of an urn. Loss is loss, it is as real as a limb or organ lost.
We all have different experiences, but just some thoughts to consider.
Félix Revello de Toro is a Spanish artist born in 1926. He specializes in portraits of women, including a 1965 one depicting a woman curled up on a chair with her head tilted down so as to permit her long black hair to hang down and obscure her face.
Jamie Anderson is the author of the blog "All My Loose Ends". The quote in question is an amalgamation of excerpts from a 2014 blog entry about loss:
https://web.archive.org/web/20200720034003/http://allmyloose...
Vision - Westview, NJ, 2023
-- Nick Cave, https://www.theredhandfiles.com/communication-dream-feeling/
I came to the conclusion years ago that grief is just unexpressed, unshareable, uncommunicable, thwarted love. It's all the love I cannot give, all the words and touches and moments that fail to alight on the one I love but instead, missing its intended, affix me to the void.
So not merely entwined, I think grief is love itself unsatisfied.
Mourning, however, is active. It’s a choice to turn and face your loss. Grief is your body telling you that you aren’t doing enough to mourn.
“So I hope this grief stays with me because it’s all the unexpressed love that I didn’t get to tell her,” he added. “And I told her every day. We all told her every day. She was the best of us.”
- Andrew Garfield about loss of his mother
Good quality information in there, saying this after years of trying to overcome a lot of stuff and never really finding anything of value. This was interesting. Hope others find some help in it.
ps: I always assumed that grieving is supposed to be done with others, they buffer the loss, share it with you and make your future make sense because your pain is not unheard and thus your emotional self is somehow intact and allowed to be. Without this you may end up as a fake shell unable to find any form of true connection since you've been alienated at your deepest moments.
The Strangeness of Grief - https://news.ycombinator.com/item?id=21939131 - Jan 2020 (20 comments)
I went down a rabbit hole when my mom died of theories of time not being linear just so I could take comfort in all those shared moments still happening, indefinitely.
In particular; see Cicero and the Emotions : Tusculan Disputations 3 and 4 by Margaret Graver. - https://press.uchicago.edu/ucp/books/book/chicago/C/bo364132...
A good review here - https://bmcr.brynmawr.edu/2002/2002.09.15/
They'll say all nice things at the funeral but actually it takes no effort to hold back tears. Many people will have the opposite problem; they want to show tears for virtue-signalling purposes but find that they can't.
I'd say the reason is that historical relationships and connections are hard to let go and when you do (saying by moving to a new place,) you're left with whatever you end up finding.
* https://en.wikipedia.org/wiki/A_Grief_Observed
* https://www.fadedpage.com/showbook.php?pid=20150436 (Canada public domain)
* http://www.samizdat.qc.ca/arts/lit/PDFs/GriefObserved_CSL.pd...
Backstory: She went to hospital one day in March last year, she had hyponatremia (low sodium) and they gave her saline solution roughly twice as fast as recommended - they wanted to turn beds you see, like a restaurant turns tables, hospitals are run for profit. She went into a coma, resurfaced a couple of days later, and then they discharged her as fast as humanly possible - oh you can’t walk now, but you’ll be fine in a week or so, they lied. I used to think that having “excellent” insurance would cover me and mine, but it’s not the case. Insurance just pays when something is available to be paid for. When the hospital decide their time is more important than your life, well, you lose. And you lose big.
Since then, and never once before, she has had a smorgasbord of mental problems, but since January, it’s mainly been crippling fear and paranoia. She thought people were in the house, that the dog was a robot spy, that I was dead and replaced by an AI. She’s convinced she’s going to be dismembered by “them” at night, and that she’ll be dragged off to “a hearing” to determine her fate. She is not getting better.
I have lost the light of my life, and in doing so, feel lost myself. Purposeless. Dead-man-walking. I break down in tears, uncontrollably, randomly. I sometimes wish I were dead, except then who would look after our son ? So I live. I have learnt to live with overwhelming sadness, to present a mask to the world, to cope. Badly, but better than not being there for him at all.
I phone her, every night. Now that she’s been moved closer (30 mins away, she used to be 3 hours away) it’s possible to visit in the week - in fact I’ll be going tonight, not just at weekends. But that just rips open the suppurating wound and adds a fresh layer of salt. To see her. Like this. A woman who did a joint JD/MBA, reduced to this.
I have tried therapy to try and sort myself out, but what use is therapy against the harsh reality of what has happened, what will continue to happen, what cannot be escaped from. What use is talking against brain damage ? How does talking about it change reality. It can’t. It won’t. What has been written on steel cannot be erased, consequences, like us, be damned.
I will not desert my wife - no matter what hardship I feel, for her it is thousands of times worse. She has periods of lucidity when she knows the agony of all she has lost, when she talks, wistfully, of how she always saw herself growing old together, bickering like only old, married couples do - and not locked on a ward put on a cocktail of drugs that keep her sleepy and docile. I am her only contact with the outside world, and she needs that. She will have it. So I force a brave cheer, and talk to her for the allotted 30 minutes, and her life is not quite so dreadful for that short period.
This is what I can do, but the toll is terrible. I walk out of that pleasant ward with my soul in ribbons, trying to pull myself together for the short but intense drive home. It is what I can do, it is not enough, but it is what I can do for her.
I am flying my son to the UK this weekend because he deserves some time in a house that isn’t as dreary and doom-laden as his own. I can’t stay because I need to be near her so she doesn't think I've left her. I can't take the time off work anyway because they’re busy, and I need my job to fund her healthcare, so I’ll catch the next flight back and repeat the task in a couple of weeks. It’s a long flight, but he’s looking forward to the adventure. For me, it’s just another nail in the coffin - not being able to provide for him as I ought to be able to, but misery is not a zero-sum game, he’ll enjoy the time away, and that is enough.
Grief is heavier than a mountain, it sits on your shoulders, and weighs you down in everything you do, or fail to do. Grief that won’t fade with time, that is renewed each evening, and twice per week in person, is not anything I would wish on my worst enemy. I sincerely hope no-one that has read this far (or anyone else for that matter) ever suffers like she, or like me.
If you can make room in your life, get a dog. They are emotionally infectious animals, and generally seem to have an endorphin firehose soaking their brains most of the time. Taking care of a dog, walking it (exercise is really important) and generally interacting with it can help amelerioate your grief. Your son might respond well to it also.
Kind of sounds stupid (I'm not a dog person) but I've seen it work and result in rewarding relationships (and, more grief when the animal dies, but that's an inevitable consequence of love).
And. For a lack of better words: I am so, so sorry for what you and yours have been through.
previous discussion: https://news.ycombinator.com/item?id=22878136
I'm a random stranger on the internet, and don't want to suggest hope for recovery, but I just finished reading a book (Brain Energy, [1]) that presents a very convincing theory that may explain the cause for most/all mental disorders, and its link to metabolism and mitochondrial dysfunction. There has been many studies in this area for decades, but the way he connected the dots and presented the unifying theory felt like a breakthrough.
It probably doesn't apply to the trauma your wife went through, but it doesn't hurt to check if some of the techniques can improve a bit her quality of life. There's so much unknown about how the brain works, and its shocking to realize that most of current treatments for mental disorders by our so-called "medical experts" are, at best, trial-and-error.
Unrelated, but another book that comes to mind is Solve for Happy [2], by Mo Gowdat. I know it's difficult to talk about happiness given what you're going through, but Mo's story of grief and choice may help you find some comfort as you decide how to move forward.
[1] Brain Energy, by Dr. Christopher M. Palmer MD - https://brainenergy.com/
https://www.psychologytoday.com/us/blog/advancing-psychiatry...
[2] Solve for Happy, by Mo Gawdat - https://www.mogawdat.com/solve-for-happy
You two are dealing with a misfortune that is one of the greatest evils that can befall a person.
I'm terribly sorry, words are insufficient I know.
In any case, thank you for helping at least this one person learn about a danger they never would have expected if they're ever in a hospital, and I sincerely hope your wife comes back to her self over time. From what I've gone on to read, a certain high percentage of sufferers of Central pontine myelinolysis (if that's what you're describing) do eventually recover for the most part over the course of months.
I know you’re not after any advice and I don’t want to get your hopes up in any way. But I do hear about brain damage due to hyponatremia & subsequent improper sodium infusions somewhat frequently as I’m part of a diabetes insipidus medical group & this is a potential reality everybody taking Desmopressin faces.
I have seen a decent amount of anecdotal reporting of people stabilizing/recovering their cognition to some meaningful degree after a few years from the injury.
Nonetheless, thank you, I will watch the video and maybe ask the doctor what she thinks.
