Matthew and Riikka are a truly remarkable couple. Matthew contacted me to share his wife’s shock story after I did a episode with Talk with Tenny. I asked if they wanted their names published or if they would prefer to remain anonymous. Matthew told me to go ahead and use their names.
He said as Riikka put it, if we don’t go public, the story will die the day after it was read. Going public we are putting our faces to the story. People will remember it longer.
She’s such an amazing woman.
Another thing that impressed me was Matthew’s dedication to Riikka during and after her ordeal. Many shock survivors are not so lucky to have a supportive, advocating spouse or family member after their lives are decimated my drugs and shock. Hats off to you two ❤
Riikka’s Story as told by her husband
First a little about my spouse. We met in 2010, and moved together in 2011. My spouse is Bipolar, and has gone through years of training in coping with her diagnose. She knows her own symptoms very well, and knows exactly when to seek help if she is starting to show such severe symptoms that this might be needed. Specially when she is depressed she is afraid that it will get so bad that she turns suicidal. He has however never been so as long as we have been together. In her younger years when she lived in Finland, and before she got her diagnose she did get bad, taking overdoses of psychiatric drugs while highly influenced by alcohol. After this she got her diagnose and proper training.
Riikka was a brilliant person with photographic memory. She would plan all our holidays without even writing a date in a calendar. She’d remember everything down to the smallest detail, and would at times tell me about things that had happened in her life down to the smallest detail. As many people forget party events, she would not. Not even if she had drunk several bottles of wine and was way drunk. She had told me in detail about the times she took overdose of drugs, and could remember details such as the interior of the ambulance, what people did to keep her awake, and exact number of tablets she had taken.
She was also a very healthy person. Over weight, yes, and a smoker, but she was never ill, got up at five in the morning to sit with a cup of coffee before starting the day, and never had as much as a headache. She was also a very active person, and would rather that I made dinner while she went out and shoveled away the snow from the driveway.
When we moved back to Sweden the fall of 2013 the first thing we did was to contact the health care system and asked for a psychiatric contact for Riikka. Someone that she could have regular consultations with, maybe one every two months or at least someone that would speak with her on short notice if she needed consultation. The reply we got was that they could arrange this, but that it would take two months. Two months became quickly one year. And Riikka started to show symptoms of an upcoming depression. She contacted the health care system that in turn sent her to a doctor that wanted her to change her drugs. She was told that a treatment with Lithium would solve all her problems. We read up on the drug and found it promising even though it can give serious negative effects if not used like it should. After the first dosage Riikka started to show negative symptoms. Hands shaking and some times serious spasms or episodes where her legs would cave in under her. The doctors said that this would go away after one to two weeks at most. After a few weeks in the ward, December 2014 Riikka came home and we went on our Christmas holiday trip
to Finland. We had a great time and we all enjoyed every minute of our stay, even though Riikka’s mental condition is mostly caused from a very turbulent past with her family. Specially her relationship with her mother and sister has been bad. We visited her sister during the stay and even stayed with her mother for a few days. This went very well, though Riikka started on a discussion withe her sister, trying to clear up some of her past issues. This discussion was continued the week after we got back. This time over the phone and Internet. The 9’th of January Riikka had gotten bad to the point that she felt she needed help. She went to the local hospital asking for a consultation. The result was that the doctor there wanted to sign her in to the ward in Östersunud. I agreed with the doctor that I would get her to the ward the next morning. The next morning Riikka contacted one of her friends and asked me to stay home with our daughter while her friend drove her to the ward.
A few hours later I was called by the ward. It was a nurse there that wanted to inform me about Riikka’s condition. He told me that they wanted to hold her there for a few days. A week at most.
He also told me that they had informed Riikka about various treatments such as ECT. I told him that I had heard that it was used again in a reformed way that was not damaging to the patients, but didn’t know anything else about the treatment. The Nurse told me that this was true, and that the treatment was completely harmless. At worst the patients got a little disorientated and maybe forgot their stay at the hospital.
Later that day Riikka’s friend, Tanya called. She told em that the meeting had gone well. That the doctors had asked my spouse «what language ?» when they came, and that Riikka had mumbled Finish, but I understand English. During the meeting Riikka had been very quiet, and only mumbled yes to doctors questions. They had told her about ECT, that it was completely harmless, and they
had asked her if she knew what it was. She had said that she had heard of it, but didn’t know what it was, and that she had only heard of it done on one extreme patient once. She had not gotten any brochures, or any papers to sign.
Monday the 12’th Riikka calls me in the morning and tells me that she is afraid. The Nurse has told her that they are giving her ECT. She is afraid of the treatment and has told them that she doesn’t want to take it, but they have ignored her. I tell her that I believe that the doctors know what they are doing, and would never harm her.
Later Riikka calls me back. I don’t recognize her at all. She has problems picking her words, and is very dizzy. She also spoke very slow. It felt like speaking with someone that was half asleep.
She told me that she had an awful headache. I try and calm her down by saying that The doctors know what they are doing.
At the end of the week Riikka has not got any better. She is not feeling depressed, but extremely ill. Awful headaches the entire time, constantly tired, problems speaking, dizzy, and doesn’t remember from the one minute to the next. Her memory is so bad that she started telling me the same thing up to three times during a phone conversation. She forgets what she just told me and starts telling me the same thing again. I have asked for a meeting where we both can speak with a doctor, so we know what’s going on, and what this treatment is that they are giving her. She has spoken with her doctor and we’ve got a meeting on Tuesday the 20’th.
For the meeting the 20’th I bring a family friend and fishing buddy of mine. She isn’t going to attend the meeting it self, but be with me to say hello to Riikka and do some shopping. Both Doctors and Nurses are late for the meeting and we have to wait for about a half an hour before they show up. I have demanded that we have a translator present. They can’t manage to arrange this, but offer a translator that can speak with us over the phone. During the meeting the doctor tells us about the treatment that they have put Riikka on. When I hear what it is I get angry. I have read about ECT
the last couple of days. It is clearly a procedure that the patients should be given good time to consider before saying yes to it. It should also be informed properly about. I have read that there are hundreds of patients that have gotten permanent brain damage from ECT in Sweden alone, and the doctors have not informed us at all about this. I decide to ask the doctor if there are any risk of getting permanent problems from ECT. The answer I get sets my mind. The doctor lies directly to my face and says that there have never ever been any patients that have got any lasting problems after ECT.
We ask if they have any of Riikka’s journals from previous hospitals. They don’t, but say that they have asked for them, and that they are on their way. I don’t say anything about this to them, but shouldn’t they have had these before they gave her ECT ?
I tell her that they are to stop the treatments immediately, but she ignores me completely. The next morning Riikka calls me and tells me that she has just gotten another ECT treatment. It is the fifth so far. I immediately call the ward and tell them to stop the treatments, and to have a doctor call me back by 15:00 the next day, confirming that they have done so.
I also tell Riikka about this, and that she is to say no to them also. She doesn’t seem to understand, so I tell her that the situation at home is such now that if she is stuck there for very much longer I will have to say yes to a job offer in Norway, take our daughter with us and move there until she is out of the hospital. We can’t afford to live on social security and I have no job in S veg where we live. This awakens her. The only thing she has understood was that I might have to take Selma and move. I manage to calm her down by explaining three times over what I said. She goes directly to the doctors after that and tells them to stop the treatments.
I also tell her sister in Finland what is happening and she gets her father to call them. He too does not want this treatment for his daughter.
The next day I call the ward back, asking if they have stopped the treatments. They won’t answer to that, but say that the doctor refuses to call me back within the time I have asked. I get angry. 24 hours should be more than enough. The doctor is at work, so it is his job to speak with patients and their family. I warn them that if he doesn’t call by the time I have given him I will go to the police. When he doesn’t I do enter the local police station and have them help me. They help me find the phone numbers to the IVO, and HSAN. They tell me that IVO has to answer to HSAN, so I call HSAN first. They promise to call the ward. Later I call the ward back. Obviously someone has called them from HSAN, because they have a doctor speak with me. Turns out that the doctor claims that he doesn’t understand when I speak Swedish. He him self doesn’t speak Swedish well at all, and when I switch to English he says he doesn’t understand English either. He gets the head nurse in the ward to speak with me. She promises that they have stopped the ECT, and that Riikka will not get any further ECT treatments.
Riikka calls me the next morning and tells me how great it was when the nurse came in and offered her coffee in stead of telling her to get ready for another ECT treatment. She also tells me that she has spoken with the doctor, and that they tried to get her to agree too ECT and wanted her to sign papers allowing them to give her more ECT treatments. She had refused. The doctors have also asked for another meeting where I am there. They want this meeting the 27’th.
When I get home two people from the local social office are awaiting me. They have been called by the ward and told that there is an angry father threatening to take his child from it’s mother and flee to Norway. The social office understood that something was not right, and when they had started to ask questions the people at the ward started to lie to them and avoid their questions. I tell them
about the situation, and offer them to go with me when I pick up our daughter from kindergarten. They offer to help us if we get in economic trouble, and even say that they may have a job for me. After all I have worked for the Social office in Norway since I was 15, and I have worked both with so called problem children and psychiatric patients. I have even worked for a psychiatric ward, and through a different job worked with prisoners on community service.
During the meeting the 27’th the doctors want to know why we stopped the treatments. I am furious with them for lying to us, and let them know this. I tell them that if they had given the correct information about ECT we might have said yes to it, but now that they have lied to us about permanent damages from ECT and not asked for consent in addition to the fact that Riikka has gotten seriously ill from the treatment we will never allow them to even mention giving her this treatment again. The head doctor at the ward tries telling me that in his 30 years as a doctor none of his patients have gotten any permanent injuries from ECT. When I say that this must be false he corrects him self and says that it has happened once many years ago. He defends using a treatment such as ECT by the fact that in medical practice there are many dangerous treatments that get changed because they have shown a high percent of permanent damages or even fatality, and that there is a constant development of new treatments. He ignores me completely when I say that even if I broke a leg and got it treated the doctor would tell me that there is a certain chance of it not healing like it should. Within psychiatry they lie about the dangers of a treatment, and don’t give the patients options. Afterwards they claim that the permanent damage that the treatment has given them is from their diagnose.
He ends up admitting that they know way too little about lasting damages from ECT, and that this is something that has to be done more work with. In his mind he actually believes that he was saving Riikka’s life while in fact he was giving her the worst nightmare of her life.
The next few weeks Riikka slowly gets better, but the doctors at the ward try and keep her there longer than needed. We don’t know if it is because they don’t understand her or if they know that this case can cause them problems and they want to show as if they are doing a great job. She is however kept from going out on her own an extra week because she translated a saying from Finnish to English and it came out completely wrong. She was trying to say to a Nurse that she was «Dead tired». The Direct translation from Finnish turned out to be «I am so tired that I don’t care if I wake up». She is frustrated about this, but we laugh it off saying that now she just has another week where the government is paying for her room and board. We wonder though how many other things they are getting wrong. She is only getting a translator during meetings with the doctor, and then only over the phone. The doctors are relying on second hand information. Given to them by nurses. Most of which don’t understand, nor speak English very well, let alone speak Finish at all. Riikka’s English has become extremely poor after the treatments. She has forgotten all of December and January. Her short term memory is gone. She gets extreme headaches every day. So bad that the doctors are worried. Yet they don’t do anything about it but give her Alvadon. One evening they had maxed the dosage of Alvadon they could give her, and even after taken additional two sleeping pills the headache was keeping her awake.
As Riikka got better she started to notice different things at the ward. The doctors where changing the dosages of drugs from day to day without telling the patients. They where also not administering them at fixed times. They where deeply worried about her being tired all the time, and not being able to sleep for more than two-three hours at a time. First off the bed she had was awful to sleep on. Second off was the awful headaches. They gave her sleeping pills every day, but one day they may show up at 20:00 the next day they’d come 21:00 and the third 22:00 to give them to her. They also changed dosages and types of sleeping pills without telling the patients. Riikka her self complained about this, and after that they put up a schema on her wall with her drugs, dosages and such, so she could keep track her self.
Doctors where always late or didn’t show up at all for meetings. She was supposed to get help filling out the papers for her sick leave, and sick leave money. After the third now show I called the woman that was supposed to help her. I asked her what the sought that Depressed psychiatric patients would believe when doctors nurses and other public service people constantly where coming late to meetings or not showing up at all.
After that they turned up on time. The damage was already done. Riikka’s sick leave money was almost two months delayed causing her to get huge extra bills for late payment.
Riikka called me one day, telling me that she had noticed that her bed linings had not been changed since she got there five week earlier. She was also desperate for some sort of activity. This was a closed ward and the only tin they where offering the patients was TV, and a few board games. Most of the patients where so drugged that they didn’t know their own names. The excuse for no activities was price, well, it doesn’t cost money to have the patients change their own bed linings once a week. Riikka demanded to get to do this every Friday. When she changed her bed linings the first time the woman in the neighboring room asked her if she could get the nurses to change hers as well. They had never been changed and she had been there over two months.
Three weeks after they stopped the ECT treatments Riikka asks the doctors if they have gotten her journals yet. They tell her that they have been asked for, but not arrived yet. Riikka spends a half an hour calling around to the four different hospitals that she’s been at before. They tell her that no one has asked for her journals. She asks them to send them, and the first one arrives at the hospital by fax the same day. She gets a couple in the post at home a few days later.
When Riikka was sent home from the ward she left with a promise from the ward that they would follow up on her condition and get her someone she could speak with once every second month or even more often. After a month she still hadn’t hear anything, so she called them asking for her journals. She wants copies of her journals for the time she has been in the ward. In stead they send her journals for 2014. She calls back asking for them again. They promise to send them, and a month later she calls again. This time they tell her that she has to write a letter with a filled in consent form for them to send them to her. After another month they still haven’t shown up.
We send complaints to both IVO and the Patientförsäkringen. IVO close their case after a few weeks without speaking with Riikka, nor me. The only thing that the IVO has done is to read the journals. Her journals do not contain correct information because the doctors would of course not have written how they lied to us, didn’t bother to obtain Riikka’s medical history, and didn’t offer her a translator when it was clear that they weren’t understanding her and she not them.
How to, and where to send the complaints is something that we have to figure out our selves. Obviously the ward doesn’t want it to get out how they treated Riikka.
I call IVO and speak with them and get them to open the case again. This time I send them copies of recordings from meetings with the doctors, and phone conversations. They promise to re open the case. If they actually do anything constructive this second time is largely questionable.
The psychiatrists are now trying to explain her injuries from the treatment by saying that they are caused by her mental diagnose, still they have admitted that she has got serious problems from their treatment, and also claim that her diagnose that she has had for over ten years is false.
To sum it all up short.
Riikka has been given a highly questionable treatment without her or her families consent. She has been treated far worse than any patient with any kind of illness should ever have to.
The doctors have directly lied to her and her family about the treatment that they where giving her. Because of this treatment she is now suffering the following:
Long Term memory loss.
Has permanent short term memory issues.
She came home more depressed than when she entered the ward.
She still has not got any scheduled monthly consultations like she has requested.
Has no longer any detailed memory. For instance she can not remember more than roughly what she did the day before. Details such as what yesterday evenings movie was about are gone, but she might if lucky remember that she did see a movie. She will remember that she worked the day before, but if a customer from the day before calls her back, she will not remember that she has spoken with that customer before.
Severe sleep issues. She is constantly tired, and can not stay up long enough to work a full day without at least two hours of sleep to split the day in two.
Severe head aches that she gets every day. They come suddenly, and feel like someone is jabbing a knife in her head. Luckily they usually go away quickly.
Problems learning new things.
Doesn’t recognize people from her past.
Problems reading. Specially from a computer screen.
Lost her sense of self awareness. Feels as if her life is not what is should be. That she is living a dreamed life, and that everything is unrealistic.
Lost complete faith in psychiatry, and trust in psychiatric doctors. Totally reliant on family and notes to manage her life.
She feels that the doctors in Östersund have destroyed her life.
What was supposed to be a cry for help where she got help to get through a difficult time in her life, she has come home permanently damaged and not the same person that she used to be. She is used to getting proper psychiatric help from the time she was in Finland, and coming home feeling better than when she left, and ready to jump into her old life and job. Now she feels the exact opposite. A hospital stay is for a person to get better, not come home with their life in ruins.
Many people argue that stories like Riikka’s must have happened in the dark ages of psychiatry because electroshock isn’t like that anymore! Patients and their families are adequately informed of the risks. They aren’t bamboozled, coerced, or threatened into “treatment.” Electroconvulsive “Therapy,” (ECT) or as some psychiatrists are now calling it “brain stimulation,“ is safe, effective and doesn’t cause any damage.
Riikka’s story, my story, and the 100+ stories of survivors in our ECT support group says otherwise.
People are lied to about the risks of death and brain damage. People are still coerced, and even bullied into treatment. When survivors try to get help for brain damage, we are gas lit–told nothing is wrong, or if something is wrong, its not from the shock, but our “mental illness.”
It’s time electroshock is recognized for what it truly is; a crime against humanity.
Do you want take part in the Voices of Shock Project? Email me at aftershockrecovery at gmail dot com.
Want to share your story but brain damage is making it impossible? No worries! I’m working on some strategies to help people with cognitive problems put their story into words, for this project or for personal use 🙂
Frank, L. R. (2006). The electroshock quotationary. Retrieved from http://www.endofshock.com/102C_ECT.PDF
Gaslighting – Wikipedia, the free encyclopedia. (n.d.). Retrieved September 17, 2015, from https://en.wikipedia.org/wiki/Gaslighting
Rice, J. D. (2015, July 23). If You Call Electroshock by Any Other Name, Is it Still A Violent, Destructive, Pseudoscientific Procedure? Yes! | aftershock. Retrieved September 17, 2015, from https://aftershocklifeafterect.wordpress.com/2015/07/23/if-you-call-electroshock-by-any-other-name-is-it-still-a-violent-destructive-pseudoscientific-procedure-yes/
Rice, J. D. (2015, June 23). Shock Survivors Go Live with Laura Tenny | aftershock. Retrieved September 17, 2015, from https://aftershocklifeafterect.wordpress.com/2015/06/23/shock-survivors-go-live-with-laura-tenny/