The story I’m going to tell you now is true. Some names have been changed, or omitted, to protect some individuals. Some names have not, since those individuals should not and do not deserve, to be protected.
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Odin is my adopted brother. He is 56 this year. A retired US special forces veteran, with a PhD in criminal forensic psychology from MIT, and 30 years of experience in global war zones, with 2 Purple Hearts, a Silver Star and a Medal of Honor nomination. He’s also a qualified sommelier and worked in the hospitality industry, five star institutions, between military tours.
He developed his own martial art system, that he teaches from home. We’ve lived together since 2015, when due to circumstances I had to move from the farm I was living and had nowhere to go because my boss gambled away my salary and I didn’t have a paycheck. Fun times.
Odin is also autistic. He has Asperger’s, specifically, and he prefers calling it that. Along with the Asperger’s, he has PTSD (obviously), ADHD, OCD, PDA, ODD, alexithymia and I’m sure I’m missing another set of letters.
He is also the sweetest, kindest, most generous, thoughtful and pure human being I’ve ever known.
And he’s dying.
When A Doctor Can’t Tell The Difference
It began in 2022, with a simple, routine clinic visit, as we are on state health care – which, in this part of the country, is actually pretty good. It’s a routine visit as Odin takes amitryptiline, prescribed in 2015 by a GP, for his severe bruxism – and has been working, with no increase in dose needed, 100% perfectly.
Odin told the doctor (new doctor doing the year medical service, we call it the Zuma year, I think in the US it’s called medical residency) that he has Aspergers. She immediately told him there’s no such thing and that Autism was only diagnosed in the DSM-5.
So according to her, everyone diagnosed before 1995 is a liar. Cool.
She then continued to challenge him, triggering both PDA and ODD and making a very calm and peaceful and non-violent person immediately very defensive. She then proceeded to diagnose him with mania. Anyone who has ever seen an autistic shutdown or defensive spiral knows the difference between mania and an autistic response. She called the psychiatric department at our major hospital in town.
After consulting with the Head of Psychiatry, telephonically, the doctor prescribed Odin quetiapine (Seroquel). It is important to note that Dr Prinsloo did not speak to Odin during the “consultation”, and his only reference for what he was prescribing was a resident doctor’s information.
Misinformation. Mis-diagnosis.
The doctor also removed the amitryptiline for no reason, let Odin continue taking clonazepam, and prescribed fluconazole for a fingernail infection, and sent him on his way.
Can anyone tell me what’s wrong with that picture?
Easter Weekend And The World’s Ending
Over Easter weekend (April 2022) Odin began taking his new meds. He wanted to see if it would make a difference, despite my severe objections, because he wanted to feel better in a world that constantly told him being autistic is wrong.
It went well, for about two to three weeks.
End of May he started getting quiet and by the first week of June the confusion set in. A man who normally talks non-stop and has 17 different special interests going at the same time, who lectures me on anything from Viking traditions to quantum physics, didn’t speak at all. He had no interest in anything. And he was forgetting things, more and more.
By the time we realized it was the medication, it was too late.
Odin lost his memory completely. There was one night he almost didn’t recognize me. He didn’t recognize his mother, or his biological sister. His students, who had been taking classes with him since 2015 – complete strangers. The first night Elsa*, who he’s been teaching for almost 8 years, came over, the 6’3” veteran tried to hide behind me because he was terrified of this stranger in his home.
Getting a carer didn’t make it better because despite sticky notes all over the apartment, he didn’t know who she was and he hid in the bedroom all day. It made it worse.
Short term memory, shot. In the distance of two steps, he would forget where he was going. At a point I would help dress him and he’d sit in the lounge confused by clothes he didn’t recognize or remember how he got them on, confused by furniture he no longer knew, confused by a balcony overlooking a town he didn’t know.
He developed dystonia (which he has, to this day, 7 December 2025) and started showing signs of neuroleptic malignant syndrome (which can be fatal.)
The medication was stopped, but it was too late. Because what the doctor did, was prescribe an anti-fungal medication on top of unnecessary anti-psychotics. The anti-fungal prevented the anti-psychotics from being metabolized correctly and my adored, well-meaning, innocently hopeful brother was effectively overdosing himself while taking the medication exactly as prescribed.
He didn’t anti-psychotics. Because he’s not psychotic. But, Prinsloo doesn’t care and according to another leading psychiatrist at this same hospital, psychiatric drugs doesn’t have side effects.
But Panado’s you can buy at the grocery shop has side effects, listed, and a list of contraindications…
I watched Odin die, slowly. He’s gone. What’s left is a ghost of who he used to be. As he says, 80% of his life is gone.
He can’t remember.
Health Department and Specialist Visits
I am blaming Prinsloo completely. He prescribed the medication. Yes, the doctor at the clinic was stupid, but she operated under the Head of Psychiatry’s orders. He made the decision to prescribe medication without seeing or even knowing some history of the patient.
He also made it worse.
I fought it. I made noise until the provincial health department got involved.
Charl Prinsloo agreed to a meeting with us, in August 2022. Odin is barely starting to recover. He still had difficulty walking, talking, remembering, focusing and sleeping at that time.
We sit down in this man’s office, waiting. He walks in and makes this statement:
“This hospital is not equipped to deal with Autism.”
Then why in all hells are we here?
He then subjects Odin to a two-hour interview during which his only motivation is to find the “single aggressive event” that would justify giving Odin anti-psychotics. Odin, not being aggressive at all, never had such an event so unfortunately, Prinsloo couldn’t find the absolution he so desperately wanted.
He also managed to miss every single anxiety symptom being displayed up to and including heavy sweating, shaking hands, bouncing knees, shortness of breath, headache and elevated pulse.
The meeting achieved nothing, and three years later I’m still waiting for the CT scan appointment.
And Prinsloo denies everything, of course.
Recovery Is Not A Straight Road
Recovery was hard. There are good days and bad days.
The clinic has been very helpful. Where Prinsloo refused to even make a note on Odin’s file that he’s autistic, the clinic prioritizes his visits and has a huge sticker on his file to indicate that. Our other hero is a pharmakologicst at the pharmacy across the road, who, I maintain, was instrumental in saving Odin’s life.
Every time we needed him, he was there.
The medication was corrected and life slowly went on. Odin’s interests gradually returned. He could go do things again and operate relatively independently, but I have to be present to just keep an eye. That’s fine. He’s my person, and he has no-one else. But it was hard. I gave up my autism advocacy and refocused on my own healing after this trauma.
This next part is a warning for suicidal thoughts without describing anything graphic.
There was a morning where I realized that if Odin died, I didn’t want to stay either. I had enough medication in the house to make sure we went together. I planned to wait until my leave so no one would notice.
That made me feel better.
But we survived the winter. We survived and we moved on.
I thought.
Early-Onset Dementia and Degenerative Tinnitus
For 7 months now, Odin’s had ringing in his head. He is a little unstable and he has difficulty speaking. He gets confused and loses his train of thought in conversation multiple times a day. We both accepted it for what it was – the aftermath of the medication and we learned to live and deal with it, because it’s now part of functioning in what’s left of him.
Simple routine clinic visit again. Great doctor, very knowledgeable and actually listens. Examines Odin and gives him this news: it is degenerative tinnitus, caused by brain injury (read: incorrect medication that poisoned you), irreversible and is that start of early onset dementia.
Just sit with that for a second.
A week ago, he collapsed against me crying because he’s scared. A man who lived through Bosnia, Iraq, Afghanistan and the Congo, who’s had building explode on him and been left for dead in trenches, covered in shrapnel scars, bullet holes and a jaw fracture, worked in the gang units on the Cape Flats and in anti-terrorism units, and has never been scared before…
He knows what’s coming, so do I.
It’s already started. Difficulty speaking. Difficulty walking. Unable to concentrate. Difficulty sleeping. Constant, debilitating pain sitting at 8 or 9 24 hours a day. Not to mention the psychological effects this is having.
I’m going to watch him, die, again. And this time, I won’t be able to save him. Not even the little bit I could save last time.
A man who revelled in quantum physics, psychology studies and abstract math now can’t do basic math in his head. He’s lost everything he once enjoyed.
The Aftermath and The Responsiblity
We are dealing with the aftermath and the collateral damage of a psychiatrist with a God-complex, an overwhelmed healthcare system and a general apathy towards autism and men’s mental health.
But what’s even more striking to me is how people will tell me, it’s not my responsibility. He’s not biologically related to me. Surely he has “other people” who can take of him.
Where were they, when he got lost in his own apartment? When I had to bathe him, feed him, dress him? Comfort his nightmares and terror? Ease his pain, manage his medication, provide for him?
Happily living their own lives.
I said it before, about his PTSD – if we really cared about wars, and veterans, there wouldn’t be any. Because we wouldn’t support it. But we’re sitting back drinking our sodas, eating our takeaways and watching our TVs, while good men and women are risking their lives in ridiculous wars on the other side of the planet. It is each and every one of our fault that veterans come back covered in scars and carrying PTSD and nightmares. So I will take care of him, for as long as I live.
But more it’s more than that. It’s not my responsibility? How dare you.
I made a promise to this man, 10 years ago, to stand by him. I don’t care if he’s not biologically related to me and that we didn’t grow up together – we’ve known each other since 2012. I don’t care if he’s not “blood”.
What has blood ever meant? Blood didn't stop my father from beating us. Blood didn't stop uncles trying their luck on us as girls.
Blood didn't stop a woman from letting her daughter's rapist back into the house "because she needed him to set up the TV".
Being "blood related" means nothing.
Are your promises so shallow, and your word means so little, that you could walk away from someone who desperately needs you, who loves you like a part of himself, just because "he's not blood"? Then you need to reconsider each value you hold.
It wasn’t my fault. I know that. But he is my family, chosen, not born. He is the only person that has never let me down, not once. It doesn’t matter how difficult it is – I stand by him and I will take care of him until the very end.
We give up so easily on our promises, our commitments, our friendships and our word, when it gets hard or complicated. It’s unpleasant or inconvenient, so we quit. But humans aren’t things to be discarded when life gets a little messy, and inside of us, if we’d just look a little deeper and further, we find strength, and resilience. We find the courage to make one person’s life a little easier, even if it’s just for one more day.
I don’t know where this is going or where we’ll be in a year from now. I do however know that I stand by my promise and by Odin.
For now, we take it one day at a time, one step at a time.
Last night, we went to see the Christmas lights. It may be one of the last times that Odin will see them.
Spend time with the people you love.
No-one is guaranteed a tomorrow.
Jaque de Villiers - beloved brother and hero
17/09/1969 -
If you want to talk to me or Odin, or if this resonated and you need more details, don’t hesitate to reach out.
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