A “Rational Suicide” Note. Ft. Anne Örtegren.

This is a “suicide” note left by a ME/CFS sufferer who sought and found relief from her suffering via legal, medically assisted suicide.  She says this manifesto took her months to write, which I do not doubt a bit: it is long, detailed and polished and was written when she was feeling terrible.  She wrote it with the intent to describe her almost indescribable pain and experience, and to convince others to take action on behalf of ME/CFS sufferers, both of which are lofty communication goals when anyone is seriously ill.

Describing and convincing have been my most impossible endeavors since I’ve been seriously ill myself and I think I have mostly failed, judging by others’ reactions to everything I’ve managed to gather the physical and emotional grit to attempt to communicate: that I am seriously, hopelessly ill with an incurable, progressive disease, that there is no bottom to how bad this can get, and it matters not what anyone thinks about it.  Some things are just true regardless of whether anyone believes it.

In this note, ME/CFS patient Anne Örtegren describes symptoms and dilemmas I have experienced myself and she foresees logical outcomes to her predicament, something sick people and especially sick women are never allowed to do because catastrophization.  For example, she knows that her heightened sensitivity to light and sound will make treatment or recovery in a hospital setting impossible where the standard of care in that environment requires constant activity and interruptions, and provides no privacy and no escape from the harsh industrial lighting, interrogations by (allegedly) well meaning staff and the general hustle and bustle of capitalistic money making on the backs and bodies of sick and dying people.

That is but one example of a sick person making informed prognostications regarding likely outcomes of the things other people want to do to us, and as someone who shares these sensitivities to light and sound (and therefore an aversion to hospital settings) as but one example of our shared experience of being seriously ill, I appreciated her spelling it out.  I also feel extremely sad that she had to, and furious that no one who allegedly cared about her wellbeing including medical professionals who should be fucking sensitive to the actual needs of real patients could make the leap themselves.  There are many such examples in this letter.

See for yourselves, and understand that as illuminating and raw as this letter is, it’s also been edited by the publisher and a so-called suicide prevention expert because the bottom line everywhere appears to be that there is no such thing as rational suicide or euthanasia because well people and people who make money off of the long-term sick and dying say so.  And because living in this capitalistic, patriarchal nightmare is so hideous for so many people that “suicide contagion” exists, where just knowing that someone, somewhere had whatever it took to end themselves is likely to cause untold numbers of happy, healthy consumers with bright futures to do the same damn thing.  Yeah that’s it, let’s keep telling ourselves that.

The letter as published is reprinted below.  The unedited letter supposedly exists online somewhere if anyone cares to look and has the energy to figure out how and where the edited version differs from the original.  Comments are open below.

Farewell – A Last Post from Anne Örtegren

Nobody can say that I didn’t put up enough of a fight.

For 16 years I have battled increasingly severe ME/CFS. My condition has steadily deteriorated and new additional medical problems have regularly appeared, making it ever more difficult to endure and make it through the day (and night).

Throughout this time, I have invested almost every bit of my tiny energy in the fight for treatment for us ME/CFS patients. Severely ill, I have advocated from my bedroom for research and establishment of biomedical ME/CFS clinics to get us proper health care. All the while, I have worked hard to find something which would improve my own health. I have researched all possible treatment options, got in contact with international experts and methodically tried out every medication, supplement and regimen suggested.

Sadly, for all the work done, we still don’t have adequately sized specialized biomedical care for ME/CFS patients here in Stockholm, Sweden – or hardly anywhere on the planet. We still don’t have in-patient hospital units adapted to the needs of the severely ill ME/CFS patients. Funding levels for biomedical ME/CFS research remain ridiculously low in all countries and the erroneous psychosocial model which has caused me and others so much harm is still making headway.

And sadly, for me personally things have gone from bad to worse to unbearable. I am now mostly bedbound and constantly tortured by ME/CFS symptoms. I also suffer greatly from a number of additional medical problems, the most severe being a systematic hyper-reactivity in the form of burning skin combined with an immunological/allergic reaction. This is triggered by so many things that it has become impossible to create an adapted environment. Some of you have followed my struggle to find clothes and bed linen I can tolerate. Lately, I am simply running out. I no longer have clothes I can wear without my skin “burning up” and my body going into an allergic state.

This means I no longer see a way out from this solitary ME/CFS prison and its constant torture. I can no longer even do damage control, and my body is at the end of its rope. Therefore, I have gone through a long and thorough process involving several medical assessments to be able to choose a peaceful way out: I have received a preliminary green light for accompanied suicide through a clinic in Switzerland.

When you read this I am at rest, free from suffering at last. I have written this post to explain why I had to take this drastic step. Many ME/CFS patients have found it necessary to make the same decision, and I want to speak up for us, as I think my reasons may be similar to those of many others with the same sad destiny.

These reasons can be summed up in three headers: unbearable suffering; no realistic way out of the suffering; and the lack of a safety net, meaning potential colossal increase in suffering when the next setback or medical incident occurs.

Important note
Before I write more about these reasons, I want to stress something important. Depression is not the cause of my choice. Though I have been suffering massively for many years, I am not depressed. I still have all my will and my motivation. I still laugh and see the funny side of things, I still enjoy doing whatever small activities I can manage. I am still hugely interested in the world around me – my loved ones and all that goes on in their lives, the society, the world (what is happening in human rights issues? how can we solve the climate change crisis?) During these 16 years, I have never felt any lack of motivation.

On the contrary, I have consistently fought for solutions with the goal to get myself better and help all ME/CFS patients get better. There are so many things I want to do, I have a lot to live for. If I could only regain some functioning, quieten down the torture a bit and be able to tolerate clothes and a normal environment, I have such a long list of things I would love to do with my life!

Three main reasons
So depression is not the reason for my decision to terminate my life. The reasons are the following:

1. Unbearable suffering
Many severely ill ME/CFS patients are hovering at the border of unbearable suffering. We are constantly plagued by intense symptoms, we endure high-impact every-minute physical suffering 24 hours a day, year after year. I see it as a prison sentence with torture. I am homebound and mostly bedbound – there is the prison. I constantly suffer from excruciating symptoms: The worst flu you ever had. Sore throat, bronchi hurting with every breath. Complete exhaustion, almost zero energy, a body that weighs a tonne and sometimes won’t even move. Muscle weakness, dizziness, great difficulties standing up. Sensory overload causing severe suffering from the brain and nervous system. Massive pain in muscles, painful inflammations in muscle attachments. Intensely burning skin. A feeling of having been run over by a bus, twice, with every cell screaming. This has got to be called torture.

It would be easier to handle if there were breaks, breathing spaces. But with severe ME/CFS there is no minute during the day when one is comfortable. My body is a war zone with constant firing attacks. There is no rest, no respite. Every move of every day is a mountain-climb. Every night is a challenge, since there is no easy sleep to rescue me from the torture. I always just have to try to get through the night. And then get through the next day.

It would also be easier if there were distractions. Like many patients with severe ME/CFS I am unable to listen to music, radio, podcasts or audio books, or to watch TV. I can only read for short bouts of time, and use the computer for even shorter moments. I am too ill to manage more than rare visits or phone calls from my family and friends, and sadly unable to live with someone. This solitary confinement aspect of ME/CFS is devastating and it is understandable that ME/CFS has been described as the “living death disease”.

For me personally, the situation has turned into an emergency not least due to my horrific symptom of burning skin linked to immunological/allergic reactions. This appeared six years into my ME/CFS, when I was struck by what seemed like a complete collapse of the bodily systems controlling immune system, allergic pathways, temperature control, skin and peripheral nerves. I had long had trouble with urticaria, hyperreactive skin and allergies, but at this point a violent reaction occurred and my skin completely lost tolerance. I started having massively burning skin, severe urticaria and constant cold sweats and shivers (these reactions reminded me of the first stages of the anaphylactic shock I once had, then due to heat allergy).

Since then, for ten long years, my skin has been burning. It is an intense pain. I have been unable to tolerate almost all kinds of clothes and bed linen as well as heat, sun, chemicals and other everyday things. These all trigger the burning skin and the freezing/shivering reaction into a state of extreme pain and suffering. Imagine being badly sunburnt and then being forced to live under a constant scalding sun – no relief in sight.

At first I managed to find a certain textile fabric which I could tolerate, but then this went out of production, and in spite of years of negotiations with the textile industry it has, strangely, proven impossible to recreate that specific weave. This has meant that as my clothes have been wearing out, I have been approaching the point where I will no longer have clothes and bed linen that are tolerable to my skin. It has also become increasingly difficult to adapt the rest of my living environment so as to not trigger the reaction and worsen the symptoms. Now that I am running out of clothes and sheets, ahead of me has lain a situation with constant burning skin and an allergic state of shivering/cold sweats and massive suffering. This would have been absolutely unbearable.

For 16 years I have had to manage an ever-increasing load of suffering and problems. They now add up to a situation which is simply no longer sustainable.

2. No realistic way out of the suffering
A very important factor is the lack of realistic hope for relief in the future. It is possible for a person to bear a lot of suffering, as long as it is time-limited. But the combination of massive suffering and a lack of rational hope for remission or recovery is devastating.

Think about the temporary agony of a violent case of gastric flu. Picture how you are feeling those horrible days when you are lying on the bathroom floor between attacks of diarrhoea and vomiting. This is something we all have to live through at times, but we know it will be over in a few days. If someone told you at that point: “you will have to live with this for the rest of your life”, I am sure you would agree that it wouldn’t feel feasible. It is unimaginable to cope with a whole life with the body in that insufferable state every day, year after year. The level of unbearableness in severe ME/CFS is the same.

If I knew there was relief on the horizon, it would be possible to endure severe ME/CFS and all the additional medical problems, even for a long time, I think. The point is that there has to be a limit, the suffering must not feel endless.

One vital aspect here is of course that patients need to feel that the ME/CFS field is being taken forward. Sadly, we haven’t been granted this feeling – see my previous blogs relating to this here and here.

Another imperative issue is the drug intolerance that I and many others with ME/CFS suffer from. I have tried every possible treatment, but most of them have just given me side-effects, many of which have been irreversible. My stomach has become increasingly dysfunctional, so for the past few years any new drugs have caused immediate diarrhoea. One supplement triggered massive inflammation in my entire urinary tract, which has since persisted. The list of such occurrences of major deterioration caused by different drugs/treatments is long, and with time my reactions have become increasingly violent. I now have to conclude that my sensitivity to medication is so severe that realistically it is very hard for me to tolerate drugs or supplements.

This has two crucial meanings for many of us severely ill ME/CFS patients: There is no way of relieving our symptoms. And even if treatments appear in the future, with our sensitivity of medication any drug will carry a great risk of irreversible side-effects producing even more suffering. This means that even in the case of a real effort finally being made to bring biomedical research into ME/CFS up to levels on par with that of other diseases, and possible treatments being made accessible, for some of us it is unlikely that we would be able to benefit. Considering our extreme sensitivity to medication, one could say it’s hard to have realistic hope of recovery or relief for us.

In the past couple of years I, being desperate, have challenged the massive side-effect risk and tried one of the treatments being researched in regards to ME/CFS. But I received it late in the disease process, and it was a gamble. I needed it to have an almost miraculous effect: a quick positive response which eliminated many symptoms – most of all I needed it to stop my skin from burning and reacting, so I could tolerate the clothes and bed linen produced today. I have been quickly running out of clothes and sheets, so I was gambling with high odds for a quick and extensive response. Sadly, I wasn’t a responder. I have also tried medication for Mast Cell Activation Disorder and a low-histamine diet, but my burning skin hasn’t abated. Since I am now running out of clothes and sheets, all that was before me was constant burning hell.

3. The lack of a safety net, meaning potential colossal increase in suffering when the next setback or medical incident occurs
The third factor is the insight that the risk for further deterioration and increased suffering is high.

On top of the nearly unbearable symptoms it is very likely that in the future things will get even worse. An example in my case could be my back and neck pain. I would need to strengthen muscles to prevent them from getting worse. But the characteristic symptom of Post-Exertional Malaise (PEM) when I attempt even small activities, is hugely problematic.

Whenever we try to ignore the PEM issue and push through, we immediately crash and become much sicker. We might go from being able to at least get up and eat, to being completely bedbound, until the PEM has subsided. Sometimes, it doesn’t subside, and we find ourselves irreversibly deteriorated, at a new, even lower baseline level, with no way of improving.

PEM is not something that you can work around.

For me, new medical complications also continue to arise, and I have no way of amending them. I already need surgery for one existing problem, and it is likely that it will be needed for other issues in the future, but surgery or hospital care is not feasible for several reasons:

One is that my body seems to lack repairing mechanisms. Previous biopsies have not healed properly, so my doctor is doubtful about my ability to recover after surgery.

Another, more general and hugely critical, is that with severe ME/CFS it is impossible to tolerate normal hospital care. For ME/CFS patients the sensory overload problem and the extremely low energy levels mean that a normal hospital environment causes major deterioration. The sensory input that comes with shared rooms, people coming and going, bright lights, noise, etc, escalates our disease. We are already in such fragile states that a push in the wrong direction is catastrophic. For me, with my burning skin issue, there is also the issue of not tolerating the mattresses, pillows, textile fabrics, etc used in a hospital.

Just imagine the effects of a hospital stay for me: It would trigger my already severe ME/CFS into new depths – likely I would become completely bedbound and unable to tolerate any light or noise. The skin hyperreactivity would, within a few hours, trigger my body into an insufferable state of burning skin and agonizing immune-allergic reactions, which would then be impossible to reverse. My family, my doctor and I agree: I must never be admitted to a hospital, since there is no end to how much worse that would make me.

Many ME/CFS patients have experienced irreversible deterioration due to hospitalization. We also know that the understanding of ME/CFS is extremely low or non-existent in most hospitals, and we hear about ME/CFS patients being forced into environments or activities which make them much worse. I am aware of only two places in the world with specially adjusted hospital units for severe ME/CFS, Oslo, Norway, and Gold Coast, Australia. We would need such units in every city around the globe.

It is extreme to be this severely ill, have so many medical complications arise continually and know this: There is no feasible access to hospital care for me. There are no tolerable medications to use when things get worse or other medical problems set in. As a severely ill ME/CFS patient I have no safety net at all. There is simply no end to how bad things can get with severe ME/CFS.

Coping skills – important but not enough
I realize that when people hear about my decision to terminate my life, they will wonder about my coping skills. I have written about this before and I want to mention the issue here too:

While it was extremely hard at the beginning to accept chronic illness, I have over the years developed a large degree of acceptance and pretty good coping skills. I have learnt to accept tight limits and appreciate small qualities of life. I have learnt to cope with massive amounts of pain and suffering and still find bright spots. With the level of acceptance I have come to now, I would have been content even with relatively small improvements and a very limited life. If, hypothetically, the physical suffering could be taken out of the equation, I would have been able to live contentedly even though my life continued to be restricted to my small apartment and include very little activity. Unlike most people I could find such a tiny life bearable and even happy. But I am not able to cope with these high levels of constant physical suffering.

In short, to sum up my level of acceptance as well as my limit: I can take the prison and the extreme limitations – but I can no longer take the torture. And I cannot live with clothes that constantly trigger my burning skin.

Not alone – and not a rash decision
In spite of being unable to see friends or family for more than rare and brief visits, and in spite of having limited capacity for phone conversations, I still have a circle of loved ones. My friends and family all understand my current situation and they accept and support my choice. While they do not want me to leave, they also do not want me to suffer anymore.

This is not a rash decision. It has been processed for many years, in my head, in conversations with family and friends, in discussion with one of my doctors, and a few years ago in the long procedure of requesting accompanied suicide. The clinic in Switzerland requires an extensive process to ensure that the patient is chronically ill, lives with unendurable pain or suffering, and has no realistic hope of relief. They require a number of medical records as well as consultations with specialized doctors.

For me this end is obviously not what I wanted, but it was the best solution to an extremely difficult situation and preferable to even more suffering. It was not hasty choice, but one that matured over a long period of time.

A plea to decision makers – Give ME/CFS patients a future!
As you understand, this blog post has taken me many months to put together. It is a long text to read too, I know. But I felt it was important to write it and have it published to explain why I personally had to take this step, and hopefully illuminate why so many ME/CFS patients consider or commit suicide.

And most importantly: to elucidate that this circumstance can be changed! But that will take devoted, resolute, real action from all of those responsible for the state of ME/CFS care, ME/CFS research and dissemination of information about the disease. Sadly, this responsibility has been mishandled for decades. To allow ME/CFS patients some hope on the horizon, key people in all countries must step up and act.

If you are a decision maker, here is what you urgently need to do: You need to bring funding for biomedical ME/CFS research up so it’s on par with comparable diseases (as an example, in the US that would mean $188 million per year). You need to make sure there are dedicated hospital care units for ME/CFS inpatients in every city around the world. You need to establish specialist biomedical care available to all ME/CFS patients; it should be as natural as RA patients having access to a rheumatologist or cancer patients to an oncologist. You need to give ME/CFS patients a future.

Please listen to these words of Jen Brea, which sum up the situation in the US, but are applicable to almost every country:

“The NIH says it won’t fund ME research because no one wants to study it. Yet they reject the applications of the world class scientists who are committed to advancing the field. Meanwhile, HHS has an advisory committee whose sole purpose seems to be making recommendations that are rarely adopted. There are no drugs in the pipeline at the FDA yet the FDA won’t approve the one drug, Ampligen, that can have Lazarus-like effects in some patients. Meanwhile, the CDC continues to educate doctors using information that we (patients) all know is inaccurate or incomplete.”

Like Jen Brea, I want a number of people from these agencies, and equivalent agencies in Sweden and all other countries, to stand up and take responsibility. To say: “ME! I am going to change things because that is my job.”

And lastly
Lastly, I would like to end this by linking to this public comment from a US agency meeting (CFSAC). It seems to have been taken off the HHS site, but I found it in the Google Read version of the book “Lighting Up a Hidden World: CFS and ME” by Valerie Free. It includes testimony from two very eloquent ME patients and it says it all. I thank these ME patients for expressing so well what we are experiencing.

PS.

My previous blog posts:

Take care of each other.

Love, Anne

Comments Open.

21 thoughts on “A “Rational Suicide” Note. Ft. Anne Örtegren.

  1. Wow, I’m near speechless. What Ann describes is similar to what I endure on a cyclical basis; however, even though I end up bed bound my illness is not as severe. I understand her feelings of never being cured. What she says about ME/CFS research and the way we are pushed to do things which makes us worse is very true. I understand her decision and pass no judgment on her. I find it sad that she felt the need to defend herself. I hate the way it was sugar-coated through editing. She escaped. She is free and I’m happy for her.

    As you are aware, I am a suicide survivor mom. My oldest took his life 5 1/2 years ago. I never jumped on the suicide prevention band wagon because I disagree with their tactics. I firmly believe that there is such a thing as rational suicide. As angry as I am about my son, I believe his choice was rational. Some of his issues could not be resolved until he was around senior citizen age and others could not be resolved ever.

    Ann’s decision WAS rational. Shame she felt the need to defend herself to the fucking goody two shoes. If people truly wanted to do something good they would have more compassion and understanding for the chronically ill. More importantly more would be done to find treatments and cures.

    Liked by 1 person

  2. Hi Michelle. I found so much truth/shared experience in her letter I was speechless for awhile too. It’s not just the symptoms but the legitimate dilemmas our illnesses cause and she explains both so well. Her experience in a hospital setting would be the same as mine, except where her skin would burn off from the chemicals and linens, I wouldn’t be able to eat the hospital food or the same thing would happen to my insides. I would be fucking sick as hell. And I too am extremely sensitive and intolerant to medications. So even if they someday create something that works, I wouldn’t be able to take it anyway. People do not get that these limitations create legitimate dilemmas for which there is no solution except more and/or different suffering. Aggregating suffering usually, where nothing makes anything better and everything makes it worse. And like she described so well, the so-called side effects don’t always go away. I think the Big Pharma meds I took for the first 2 years caused permanent damage and made a full recovery impossible. And every setback I have seems to reset my “new normal” even lower than it was before and I never recover. And that includes the forced exercise theory that Anne alludes to that everyone hangs their hats on but that doesn’t actually do anything except make us worse.

    I would like to know if Anne was able to at least try marijuana. In fact, if seriously ill euthanasia candidates aren’t being given the option to treat with medical cannabis, we are all lying to ourselves about how merciful assisted suicide really is. Same with seriously ill people who kill themselves in part bc they can’t get the social services they need. I fully support rational suicide of course, without restriction preferably, where seriously ill people are not forced to navigate this system in order to get relief and to spend some US$12,000 that’s currently required to initiate and complete the process. But I am in the situation now of being denied social services, and I can’t be homeless with this illness for many reasons, similar to the problems I would have in a hospital setting and in both settings I would be unable to possess or treat with the only thing that has ever worked for me on any level: marijuana. It is unbelievably tormenting to be contemplating rational suicide for a serious illness when my “real” problem, or 75% of it anyway, is due to the social and financial consequences of disease that could be remedied if only anyone gave a fuck. But no one does give a fuck, so suicide is a necessary option for ALL sick people to avoid these hideous outcomes. Like being homeless and progressively ill and increasingly disabled at the same time.

    The conversation around suicide is so dishonest on so many levels, it just galls me. I’m sorry you had the experience you describe with your son, but I am grateful that you have been able to remain thoughtful and rational about suicide instead of being reactionary and authoritarian like everyone probably expects you to. It’s all so fucking dishonest, and manipulative, and I am so glad you and others aren’t falling for it.

    Liked by 2 people

  3. I also am sensitive to pharmaceuticals. Many people think I’m just being noncompliant which only angers me.

    Yes, the financial difficulties of chronic illnesses is one of the reasons I want out so much. Not only do we suffer physically, we also do emotionally due to isolation and financial difficulties.

    Both the psychiatric community and the suicide prevention community make me sick. Don’t trust either.

    Liked by 1 person

  4. I don’t know if you are in the states, but if you are, you know the problems that our for profit (male) medical systems cause.

    The doctors, specialists, pharma and hospitals don’t make money when people are healthy. Money is only made when people are chronically sick, because those people have to keep coming back and spending money.

    And all of it is tied to how “deserving” we are. We are ruled by men that decide that we are not deserving of food, clothing, shelter, medical care unless they find us to be worthy, and they always find us to be undeserving.

    I don’t smoke marijuana, it makes me physically ill. But I know enough people that benefit from it and I have had enough personal experience with it to know how it can help a sick person feel much better. Male government withholds it to create suffering because they think some people deserve to suffer. They enjoy it.

    (I had a coonhound that had cancer, I treated her with marijuana for a while. It gave her a quality of life that was almost unbelievable. It gave me a few more weeks with her.)

    Liked by 2 people

  5. I am in the States and understand what you are saying. They don’t make a profit if we are healthy or dead. The chronically ill serve them well.

    Have you tried edibles? They might agree with you better than smoking. I either smoke or take edibles before bed for my seizures. I find the edibles (gummies) have a more tolerable affect on me.

    Liked by 2 people

  6. I think that if people can’t tolerate mmj it’s possible that they aren’t sick enough to even need it. And if they get sick from it, it’s probably an allergy to the plant which is a huge problem for seriously ill people, esp ones with immune problems. I broke out in hives after a week of juicing the raw plant. But giving toxic pharmaceuticals to extremely ill, compromised people is a terrible idea that was born in the pits of hell, full stop. There is just no way that’s a good idea that will turn out well. Anne makes a point of saying that she methodically tried every single protocol that was offered before she chose suicide, but was mmj offered? The way she describes her pain, she was at a pain level of 10 for many years. I also experienced a 10 for several years before fleeing for my life. And mmj absolutely helps with that. In my experience, the side effects become more problematic the better I feel and the less I need it. When I am extremely ill, the side effects don’t bother me much if at all, and I don’t even like pot and never have.

    The thing about Anne’s letter that got me was the familiarity of her symptoms and the type and degree of suffering that only seriously ill people ever know is even possible. Like every cell in your body screaming. That is a very specific thing that I have only ever heard very few people describe. I have also heard a few people describe a “vibrating” feeling that I now suspect is literally the feeling of your mast cells becoming unstable and exploding. Anne describes symptoms of mast cell disease and I have experienced that too. I wonder if all AI patients have mast cell disease and that’s what AI is. The pain is unbearable and unrelenting. You have zero quality of life and the pain and other distressing sensations, and the constantness of it, literally drive you insane. Getting through the night is next to impossible, then your prize is that the sun comes up and you get to face another day in unrelenting pain, and then another sleepless night. It is by far the most hellish thing I have ever experienced and much worse than anything I could’ve imagined before it happened to me. If Anne somehow managed to get through the “green light” process of qualifying for “official” medically assisted suicide, it had to be bc she had people helping her and/or doing it for her. People who don’t have help are going to be hanging themselves in closets when they feel this bad for any length of time and that’s almost what happened to me. It still may and I will not regret it at all. I will do anything to avoid being in that kind of pain and insanity again. And I suspect that while there may be one or 2 people reading here who grok what that actually means, almost no one who is currently alive understands what that type and degree of pain is like. Mmj absolutely helps with that in my experience and should be on offer to anyone who is contemplating rational suicide.

    Liked by 3 people

  7. My opinion is that marijuana should just be no one’s business. Just like if I grow or buy tomatoes or any other thing that I want to consume. I have an AI disease that was passed to me by my father, and most of my life has been spent in remission with the exception of 3 times, which was when I went through puberty, when I had a tubal, and now, while I am in menopause. The first 2 times, my flare up lasted for a few years. This flare up is severe and seems to be unending, and while it’s really uncomfortable at times, and it can be painful, I have never felt the kind of pain that you are referencing.

    My husband benefits from marijuana. He shits blood every single day, for weeks at a time, and when there is no blood, he always has diarrhea. Marijuana alleviates his pain, I know that you understand that. We spent about 2 years where he had a colonoscopy, and visits with expensive specialists, and a 2nd colonoscopy that we had to pay outright for because insurance refused to pay for another colonoscopy so soon after the first one, even though the specialist requested it, and the world’s finest health care system found nothing. That system did receive thousands of dollars from us, though.

    I had an allergy to dairy that I discovered on my own after 6 or 8 visits to my family doctor, which was hundreds of dollars out of my pocket and however much that the insurance paid, only for my doctor to never find out what was causing my issue. He probably knew. But there’s no money in diagnosing me the first time.

    After I had the tubal, I picked up a nasty infection that ended up being treated with 2 cheap antibiotics. But my doctor couldn’t find the infection. The specialists couldn’t find the infection. I lost all of my hair, my digestive system was not functioning, I had a constant fever, and I was running out of money. My vet, who is the smartest, most caring doctor that I know told me exactly what tests to ask for, she told me to demand them. If not for her, I suppose that the finest healthcare system in the world would have allowed me to die, and as it was, that illness bankrupted us. It was several years and hundreds of thousands of dollars, my out of pocket after insurance was over 12k, every doctor that I saw made a fortune from not diagnosing me and having me come back over and over. I almost died. My vet saved my life.

    I wish that I could help you. I don’t really wish that anyone could access what passes for “healthcare” in this country because in my experience and observation, it’s just a money grab that only profits when people are sick.

    The most upsetting thing in this post for me is to know that Anne was in a country that has universal health care, and she still didn’t receive care that she desperately needed. And I suspect that has something to do with her being female.

    Liked by 2 people

  8. I just don’t like the way it makes me feel, and that doesn’t count the nausea, which I can’t stand. I have smoked it maybe 6 times over the course of my life.

    It should absolutely be legal, across the board. That will never happen, not while Jeff sessions and other rich whites males like him need to find reasons to put people in their for profit prisons.

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  9. There is a syndrome where marijuana causes some people nausea and vomiting. I can’t remember what it’s called. The only thing that’s diagnostic for it is if taking a hot shower makes you feel better. Some kind of vasovagal response maybe? I wondered if I had that at one point because I was still having extreme nausea even with medicating when mmj is supposed to be the one thing on the planet that works for nausea. But hot showers definitely make me feel worse because of my AI. I just think that in my case, my stomach is actually dysfunctional and that kind of nausea is something that mmj just can’t completely alleviate all the time. Maybe if the nausea were hormonal instead it would work better for that idk. What you are describing sounds like that kind of reaction. I’m really sorry you can’t tolerate it bc it is excellent medicine for so many things.

    Your experience with your infected tubal sounds hideous, I am so sorry to hear about that. It’s funny/not funny too bc even skeptical people think that if nothing else, Western medicine is good for treating trauma and infections. Too bad that’s not actually true a lot of the time, and too bad also that they cause so much fucking trauma with their interventions. It really seems as if Western medicine isn’t good for anything then, and at that point you do have to wonder what the hell they are even doing and why. Is it really as evil as it looks? I have to conclude that yes, it really is exactly what it looks like and it really is just pure evil. I think activists/advocates who try to get people access to Western medicine are terribly misguided for that reason and I wonder if they have ever actually been seriously ill or known anyone that was and if so, how the hell can they still advocate for more access to this mess? Most activists/advocates are really just controlled opposition. It is such a waste of good people’s time and energy and gives such false hope. And yes, people are even dying constantly from Western medicine including medical mistakes but they keep going back for more.

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  10. Re: Anne not getting the care she needed bc she was female, yes I’m sure that must be true, even if it’s just that AI disease strikes primarily women and (therefore) they haven’t bothered figuring it out yet. But I also think that there is such a thing as untreatable, incurable disease. Especially since nuclear started contaminating everything and we really don’t even know the full effects of man made ionizing radiation bc it is not native to this planet. If that is not terrifying I don’t know what is. As Anne described, I think a lot of people in her situation would be willing to live whatever small lives they can as long as they weren’t in terrible pain, and as long as they had what they needed materially like food and shelter. It’s possible that getting people access to mmj and stable housing is going to be the best anyone can do. I really think that’s where we are headed and I wish people would seriously consider that as a realistic solution to the issue instead of assuming that every disease has a cure and spending so many resources on deadend research and development that’s not going to actually help patients. We really might be there and if we are we need to be honest about that. It really does seem as if the shit has finally hit the fan.

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  11. I think that maybe wealthy people or people who come here from other countries for treatment (Canada used to pay for people to come here for treatment, not sure if they still do) may actually get real care and whatever healing is available. In the case of other countries, if people actually get good treatment, then they send more people and money gets made from the healing.

    I have also had friends lose their house due to medical bills. My house is a mobile home, I knew that I could probably pay it off as a single woman, at the time. It is paid for, but one accident and the hospital can and will take it. Our healthcare system is yet another way to take from the poor and give to the few rich males that own the majority of the wealth.

    I live close to a newer woman’s prison that is private and for profit, and it is contracted with the government to be at 80% capacity. The government has garaunteed that this prison will always have a minimum number of women in it, while knowing that women don’t commit nearly the amount of crime that males do. So the government has to criminalize women and find a way to create female criminals out of thin air. This is one of the reasons why the government will continue to put males in female prisons. Prisoners create money for a few rich guys in suits. The private women’s prisons that are popping up will likely end up having very few women in them.

    Male greed is killing us, males have turned poverty into a murder weapon. I read recently, it might have been from you, that there are so many AI diseases, as if everyone has an AI disease. I didn’t realize that psoriasis is an AI disease until I saw you talking about AI, I looked it up and was shocked at how serious and internal that psoriasis is. Also, it’s fucking gross. But I don’t get upset that I can’t afford to see a doctor because I have never had one help me, outside of my vet. I try to treat myself with various supplements that are unregulated and may or may not contain the vitamins and other things that the male corporations that sell them claim they contain. I also try to eat fruits and veggies but I have largely given up on the fresh ones. The last tomatoes and cukes I bought the last time were gummy and tasteless.

    I think a lot of the reason that millennials are so lacking in energy and have such high rates of depression is because of the food they have been eating their entire life. I am gen X, and I know it’s a common trope that older people say that things tasted better when they were younger, but veggies and fruit did taste better and hadn’t been fucked with to the degree that they have been now. The planet is dying, males are killing it. And they are dragging us all down with them.

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  12. Radfemspiraling, that’s what I have always thought that vets are so much better than human doctors it makes sense you were able to actually get help from your vet when the doctors wouldn’t help you right, I’ve always thought that vets are so much more capable and wished they could help me too. It is such a different approach to everything when I take my animals in for care and the vets actually listen to me about what is wrong, pay attention to the animal’s behavior, and pay close attention to all symptoms so they are able to actually figure out what is wrong. They understand the whole body as a connected system in a way that the human doctors are so disconnected from and they actually care about their patients too. When I try to get some kind of help for myself it’s like talking to a robot dealing with these people.

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  13. That’s interesting to hear about people describing their severe pain as their cells screaming and vibrating. That is exactly how I described it too when it’s at the worst, it was like every cell in my body was screaming in agony for me to do something but I couldn’t stop it only try to do things to lessen it. When the pain gets to the highest levels it’s like my entire being is being ripped apart on a cellular level, which I could see calling the ripping feeling vibrating.

    I’m always in pain but it’s always different though. I really was convinced I was about to die with how bad I got before but I managed to regain a large amount of health back after so much work for it but it all goes in cycles and I never know what anything will be like and there’s continually something new popping up. I think I would have gone crazy by now though if the highest pain level was constant.

    I know exactly what this woman is talking about with the burning skin thing. Anything at all irritating causes my skin to feel like it’s on fire and turn into a horrible painful rash if I don’t deal with it immediately with some aloe and an ice pack or a damp cloth with cool water until it calms down. If I sit there for a few minutes hoping it will just go away, not messing with it at all, it will just continue burning and getting worse. I can’t tolerate any kind of irritating fabrics or tags on my clothes or the pain is severe. Though compared to what she’s describing it’s no where near that but it’s already tortuous and I already have my ice packs and aloe and other moisturizers ready. I try to always remember to have my ice pack next to me when I sleep in case I need it. I’ve had some pretty severe burns from the oven before and this feels literally just like having some of my skin burned off. It’s like my body is on fire all the time already. The inflammation all over makes it feel like I’ve been slowly burning alive for years and the slightest thing will set it off so much more.

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  14. That’s horrendous how this woman was continually given all these drugs that were clearly just making her sicker. They will really just drug you until you die if you let them. That’s their only response to anything.

    I was able to treat my horrible pain and inflammation, plus all the depression and shit that comes along with all this, with marijuana for many years until I actually did have that syndrome happen from overuse where it made me sick and I was throwing up. When I was having extremely severe digestive problems, that I now see as my body trying to clean out the poisons, I couldn’t tolerate ingesting anything at all. Not only was I unable to eat anything, but even one hit of weed and my heart would feel like it was about to explode and the nauseating feeling would be overwhelming, then it would all make me panic and seriously wonder if I was having a heart attack or something it felt so bad. After that I was afraid to smoke/eat/vape any more at all for a long time, then I was able to tolerate a small amount. This was after I’ve been smoking weed since I was 15 until I was 32 and I had been smoking very heavily since mid twenties. Everything in my body just all reached a point of overload.

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  15. They will absolutely drug you until you die if you let them. 100% yes. I thought there was a lot of virtue signalling in this letter, like where Anne describes how she took every fucking poison they threw at her. At no point was she allowed to see the writing on the wall and say “enough”. No, she was required to take it all like a human science experiment and report back until there was nothing left that they could force her to take. I disagree strongly that this is a wise or rational course of action, but Anne did everything the mainstream would require of her and it only made her worse. As she began her letter, no one can say she didn’t put up enough of a fight. It seems important to her that people know that but what about those of us who can’t or won’t do that to ourselves? What about those of us who can’t afford to let those pricks make us worse bc we don’t have anyone to take care of us when we become even more disabled than we were before? Anne clearly speaks from the mainstream, but it doesn’t sound as if Anne speaks for the majority on many issues including what it’s like to navigate this system (or her own country’s system) ALONE with no support at all from family and friends, or what it’s like to do all of this while you are poor or in unstable housing. I’m glad she said her piece, because it was so mainstream and “rational” even by mainstream standards its really impossible to fault her. I think there is a place for that kind of bulletproof testimony. But there are many more voices that will never be heard bc they are even sicker and even less supported than she was, and/or they end up being punished for taking a parallel route, but not being virtuous and authoritarian enough.

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  16. One thing about men is that they cannot view anything as a whole, they must chop everything into pieces. From my experience, when you get severely ill, you are sent to several different doctors that specialize in this area or that area, they don’t communicate, and they don’t look at the entire body, they only deal with their one very specific thing.

    Vets don’t do that, by necessity, I think. They see the whole being and how the entire being is affected by different systems and symptoms. Vets, female or male, have to be able to function in a way that most males aren’t capable of functioning in that they have to see the whole and how the pieces fit into the whole.

    Men are obsessed with categories, sections, pieces, anything but the whole, they are too intellectually stunted to think in a way that isn’t linear. Males create a box for everything, and everything is a very specific, narrow, little piece, anything more is too much for them to handle.

    My original vet retired after 25 years, she picked her replacement, and he is very good. I am happy with him, but he is a vet and he is good at it because he isn’t rigid and stupid, like most males.

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  17. In the documentaries about assisted suicide, sick males always have a female caretaker, a daughter, wife, etc. The women also have female support, usually in the form of close friends, but no caretaker that lives with them and takes care of them.

    I know what you mean about her letter, about the virtue signaling and her testimony. But I have to question how important her message actually is, to people with the same disease, or women needing treatment that they aren’t getting, or how sick people have to do as they are told and take whatever drug they are commanded to take. I still appreciate her effort, only a woman would put the time and energy into attempting to change male society for the better, even when she knows she is going to die.

    I hear her, you hear her. Those that listen to her can’t really do anything about it, and those that can fix it will not care. It’s an awful reality to acknowledge, but it’s still true that male society don’t care about women and they especially don’t care about dead women. It’s sickening.

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  18. That is the problem with all radical writing isn’t it. I think on some level these messages want to be heard. Writers know that there is “something else” besides us involved in the creation process. But yes, what even is the point in expending energy that sick women don’t have in order to get a message out that’s never going to go far enough or be heard by the right people — if the right people even exist which they probably don’t. Anne ends her message with “take care of each other.” Maybe she knew by the end that community and friends are the only “caretakers” of sick people and especially sick women and that doctors aren’t the answer. Maybe her suicide note was a template suicide note for everyone in her situation who isn’t physically or mentally able to spend months writing something like this (describing both symptoms and dilemmas which most people simply cannot get their heads around, as it takes extreme intelligence IMO to recognize legitimate dilemmas when you see or experience one). Most people cannot recognize legitimate dilemmas, like being too sick to take care of yourself but also too sick to live with other people, even if someone offered. Or being too sick to go to the hospital. Everyone always “thinks” (assumes, based on nothing) that there is an answer and a solution to every problem but that just is not true at all. It’s the same message Guy McPherson tries to get through to people every day about exponential climate change and tipping points which are also problems without solutions. Maybe there is something significant in pointing out that for some things, there is no solution and making the case for that which is airtight and bulletproof. It certainly seems to be a unique perspective if nothing else. Anne obviously intended to leave her message as a voice from beyond the grave, which is also exactly my point in creating content on this blog. So people could see that she wasn’t wrong and that she did all she could, and that others are in the same situation whether they know it or not. I have no idea if that’s important or not but I’m doing the same thing and we both seem to have been moved to do it. Maybe someday I will find out for sure whether it even mattered.

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  19. There are some things where there are definitely solutions, but none are made available in order to cause suffering. We are in a capitalist patriarchy at the end stages, the priority of this system has never been to alleviate suffering, encourage kindness, or really anything good.

    Part of me is glad to know a little bit of Anne’s story, I always want to hear their story, even if it is the opposite of everything that I believe. I want to know about other women. But. I hope she didn’t hurt herself or caused herself even more pain in the writing of it. Sometimes silent stillness is our only refuge, I hope she didn’t give even a second of that up to write, if she had even a second of it at all. Maybe the message itself was the point, and the exertion was worth it to her.

    I have learned that reason, logic, begging, explaining, pleading, nothing will change the structure that we are in. Males in power don’t respond to any of that. I have read that there is no evidence that men want anything different, and that is something that I learned directly from you. That is the most correct observation in the history of ever. So I assume that we are allowed to be radical, have radical thoughts and write radical things as long as we are ignored and/or mocked.

    I hang around on the internet in these very specific places because I enjoy interacting with women that share my worldview and the refusal to be gaslit. That’s enough for me. It may not matter to anyone in the long run. But it matters to me, makes life a little easier to bear. So I hope that Anne writing her message did something similar for her, that it did something positive for her. That was, I hope, what mattered to her. And if it mattered that even just a few people heard her, I hope that there is some way that she knows that we did.

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