I can’t believe I’d ever had to write an entry like this. It turns my stomach.
On Friday, MindFreedom, a non-profit human rights organization for people labeled with psychiatric illnesses, published the disturbing story of Ray Sandford, a 54-year-old resident of Columbia Heights, Minnesota.
Sandford’s sad story is amazing and haunting. He is undergoing electroconvulsive therapy (ECT) for severe depression. We don’t know the full back-story, but the fact that he lives in a sheltered living home called Victory House suggests he’s had a rough life of it so far.
Lots of people undergo ECT, although I’m not a big proponent of it. I believe that because of the unpredictable memory loss associated with this “treatment,” it is not only a treatment of last resort in depression, it should probably be done away with as a treatment altogether except in extreme cases. Proponents of ECT claim the memory loss associated with ECT is always around the time of the ECT itself, yet there are thousands of documented cases (many of which appear in the published literature) that show that the extent and severity of memory loss is random and unpredictable. You could lose memories associated with your childhood, or best friend, or even a spouse. No one can tell you what your experience will be. So in effect, the treatment can be nearly as painful as the disease itself.
Which isn’t to say that ECT hasn’t helped people. But so did amputations prior to the 1800s, because medical science had no understanding of infection, bacteria, or sterilization. I would humbly suggest our understanding of the brain is about where medical science was 200 years ago. And to apply electrical shocks to it to combat depression is akin to amputating your leg because you suffered from a scratch while walking in the woods, which later got infected. It works, but it’s the crudest method imaginable. (Frankly, I put it a small step up from trepanation.)
So ECT is a treatment option and since science has shown it works (just as science once showed that leeches applied to the body “worked”), it’s available to anyone who is informed of its risks and chooses it as a treatment for depression.
But ECT is rarely administered against a person’s will in modern science. Most professionals and states recognize that a person’s Constitutional rights would likely be violated if they were to be forced to undergo a controversial treatment procedure that even the scientific community doesn’t agree upon. Sadly, Ray Sandford lives in Minnesota, and apparently Minnesota doesn’t much care about a person’s Constitutional rights if they’ve been relieved of them by a court. Ray Sandford doesn’t want the ECT treatments, but he no longer has a choice or say in the matter.
Ray Sandford has a legal guardian — a court-appointed conservator — whose name is Tonya Wilhelm. Wilhelm works for Lutheran Social Service of Minnesota and it is Wilhelm who authorized the forced treatment of the person she is legally bound to protect and look out for his best interests. Of course she didn’t do this on her own, a doctor experienced with ECT treatments recommended it to her (or the courts), and she agreed (on behalf of her client). And why not? What does Wilhelm have to lose since it’s not her brain they’re treating?
The transcript with MindFreedom’s David Oaks is chilling:
Ms. Wilhelm said, “We are following the letter of the law.” She said the State of Minnesota had secured a variety of court orders that require Ray to have forced electroshock against his expressed wishes. Ms. Wilhelm says it’s all legal and she can’t do anything about it.
Well, of course you can do something about it — you’re charged with protecting the person that you agreed to act as conservator to!
Lutheran Social Service of Minnesota is the largest, statewide non-profit social service organization in Minnesota with over 2,200 employees who serve in 300 communities. It has an annual budget of $90 million. So this is not some mom-and-pop organization, but rather a far-reaching Christian-based organization that should know better. And, you’d think, would be against forced-treatment of this nature.
Agree or disagree with me about ECT. Agree or disagree with me about forced treatment. But I think most of us can agree that if that were our loved one who was being forced to undergo a controversial treatment with questionable and sometimes disturbing side effects, we’d take a step back and ask such treatments to stop. I thought the barbaric practice of forced electroshock treatments went out in the 1960s, as we began to better understand the human dignity and rights of people with mental illness and close down the huge public psychiatric hospitals. Nobody should undergo a forced medical procedure that they don’t want, regardless of the outcome. That is a right embodied in our rights to “life, liberty and the pursuit of happiness,” the foundation of our Constitution.
We don’t know all of the details of this case (like Sandford’s previous history, other treatments, and why he has a conservator). So perhaps an important piece of the puzzle hasn’t been provided. But I can’t imagine what additional information would make forced ECT treatments “okay.”
We call on the good people at Lutheran Social Service — Mark Peterson, Jodi Harpstead, Joyce Norals, Kenneth Borle, Ember Reichgott Junge, Jeri Schoonover, and Rod Brown, all of whom are the executives of Lutheran Social Service — to look into this matter more closely and determine whether Tonya Wilhelm is indeed acting in the best interests of her conservatee, and reply to the allegations that Ray Sandford is being forcibly made to undergo ECT treatments he does not want.
By the way, Minnesota is one of those states that agrees with forced outpatient treatment and has codified it into law. The Treatment Advocacy Center calls such forced treatment as “assisted outpatient treatment.” That’s like calling prison an “assisted living community.” According to TAC’s site, the forced treatment has to be court-ordered because the person has a high likelihood of being a danger to himself or to others.
Read the two articles on Furious Seasons (hat tip!) about this: Help Stop Forced, Involuntary ECT In Minnesota and Neuroscientist Defends Forced ECT
Read NeuroSkeptic’s response: Shock and Cure
Read MindFreedom’s article which has a call to action in it: If it’s Wednesday, then Ray Sandford is Getting Escorted from His Home for Another Forced Electroshock
29 comments
I, also, hold the opinion that this type of treatment needs to be banned. Once it is no longer a crutch for psychiatrists to lean on when they can’t bother to look for something better, then maybe they will be forced to find that “something better.”
I can’t hold this Christian group responsible, and your holding that out as a determinant is disturbing.
The people that need to be held responsible are those who put this law into effect in MN. If it was publicly voted, then they live by their actions, as we all do.
If this gentleman has a guardian, it’s for cause. He isn’t able to make sound decisions.
If the guardian doesn’t follow doctor’s recommendations, then she puts herself in the place of being liable and playing “God” over the advice of experts.
Wouldn’t you condemn someone who prevents a doctor from treating their charge just because the incapacitated person said they didn’t want it? That’s why we have guardians, to make those tough decisions as best they can.
Also at the core of this is the problem with most people not making any kind of advance arrangements, and thus becoming a ward of the State. Urging everyone to write down their wishes, to make an advanced directive that is more than the simple form available, and to talk to their relatives about choices, would be a good blog entry, in my opinon.
If any group puts themselves in a situation where they are defending the State’s request for a “treatment” such as ECT against the patient’s will, that group has something to answer for. Who are they protecting? Themselves, or the patient’s rights? Are you honestly suggesting that someone who doesn’t want forced ECT should get it anyway?
When people decide not to fight injustice like this because it’s easier to “go along with it” than it would be to argue against it, that’s disturbing. If you see injustice or evil in the world, you work to try and stop it.
Especially for the person whose protection you are responsible for.
As a survivor of ECT, I find drjean’s comment about an advanced directive both insulting, misguided and patently offensive.
I live with a primary MH diagnoses of Bipolar II Disorder. I cannot tell you exactly when, but around the turn of the century, I started being hospitalized for suicidal depressions.
The doctors told my best friend and boyfriend that I was hopeless, that it was just a matter of time before I killed myself. Around the third stay within a year or so, I agreed to ECT.
My friends and boyfriend tried to talk me out of it, knowing in my healthy mind I am against it. I don’t remember much of this. In fact, after over twenty-two “treatments”, I cannot remember but slivers of the years 1999-2002.
My friend would bring me in for the shock, point out that I was still slicing my wrists open and they’d smile and shock me again. I do recall enjoying the guy holding up the knock-out needle and smiling, saying, “Small prick.”
I loved being knocked out because I was in such bad shape. But I don’t remember those years. I watched as 9/11 unfolded, but I don’t remember it at all. Some might say that’s a blessing, but it’s not. Imagine, if you will, a random three years of your life were wiped out.
I’m not even talking about the recovery time. Where my best friend watched the same documentaries that I picked, four or five times before a glimmer of recognition came to me. The crosswords I struggled with. The slowing of my brain that used to be photographic in memory.
This is the end of the second year that I have not spent at least two months on a psych ward. I cannot credit ECT with this, whatsoever. In fact, it might have happened sooner, had it not been for my brain damage.
I had to spend down all my savings to go on SSDI, a state of living which is not helped by the majority of public servants. I would like to thank Phylis Hilly of The PA Advocacy For Workers With Disabilities. Over the last decade, she has shone with her kindness.
But about that advance directive that drjean posits. I didn’t know how quickly I would crash and lose everything. As a single, successful female, I never imagined the position I found myself in. Maybe the good drjean cannot, either.
My best friend ended up being a “rep payee” for my SSDI check, in case I was in hospital. I also gave her my Medical Power of Attorney a few years back. Turns out the MPA does not apply to mental health.
How do I know? I was in a psyche ward for three months December 2006-February 2007, receiving treatment my friend thought was detrimental. They laughed at her.
We now have to find a lawyer to draw up separate MHMPA. Maybe drjean might like to recommend one.
My mind is part of my body. Why the hell is it not included in a Medical Power of Attorney? drjean?
ECT is a treatment that is very helpful for some but can have significant side effects. Instead of beating up on the treatment, why not just criticize the legal oversight that has permitted its apparent illiberal use in this case?
arspsychiatrica.blogspot.com
ECT for depression I believe has to put in right manner, in the opinion on sciences some might help, but to overcome depressions, there is only one way to pray to God and daily meditations.
A guardianship ward is stripped of all rights: the right to decide where to live and whom to associate with, how to spend (or save!) ones own money, accept or refuse medical treatment – or even ask for a second opinion – marry, vote, etc., and the most important right of all: the right to complain.
This is what is going on in this case. Just as ECT should be a last resort, so should guardianship.
As it states in the article, it’s not the guardian’s brain they’re “treating” But because of the guardianship, Ray Sanford doesn’t even have the right to protect himself.
For more information on unlawful and abusive guardianships, visit NASGA at http://www.StopGuardianAbuse.org and the NASGA blog at http://NASGA-StopGuardianAbuse.blogspot.com.
Yours,
Elaine Renoire
NASGA
Definitely because my doctors applied ect 7 times when i got stick.. Thank you so much for information.
@Novalis — Because research shows that medical students (who later become doctors) don’t even understand the side effects of ECT and up until 2007 — nearly after 7 decades of use of this “treatment” — the first comprehensive study was finally done on cognitive deficits after ECT treatment. One of the findings from that study is also eye-opening — there are so many variations and accepted ways to perform ECT that you’re unlikely to find any two efficacy studies actually performing the exact same type of ECT.
ECT is a treatment of last-resort. Always. And because it is poorly understood why it works and what kind of cognitive and memory impairments a person who actually have, it should never be forced on another human being. It’s barbaric, there’s no other way to describe it.
Forced ECT is legal in most states as far as I know. It is legal in Virginia, legal in New York State, I could do a search of all state laws but don’t want to spend the time. Once any forced MH treatment is allowed there is no reason ECT will be an exception. The only exceptions in Virginia’s law are forced psychosurgery and forced abortion and forced sterilization.
I’m not sure what the problem with my reply is.
I agree that forced ECT is wrong. I also agree that MN is wrong and needs to reevaluate it’s law.
However, I won’t condemn the society nor the guardian. The guardian IS now the will of the patient, whether we like it or not. She has the responsibility to make an informed decision, and obviously the doctors -the experts in this case- have urged the ECT for their patient.
How else is she supposed to make these types of decisions, if she is left to her own knowledge and ignores medical advice? If the patient isn’t given the advised treatment and then suicides, aren’t you going to hold HER responsible? She can’t win according to your rules. Wouldn’t you condemn a guardian for going along with a patient’s decision that goes against medical advice, even though she is there because the patient has been determined not to be able to make such decisions.
By the way, with the influx of federal monies (though I’m not sure of this particular case) the government requires even Christian organizations to hire everyone qualified, whether they are Christian or not. The original entry appeared to assume that the guardian, because of her employment with the Lutheran Society, should act like a “Christian” and not force such a barbaric treatment on her charge.
I think the crux of this issue is that you don’t agree with ECT, and you’re taking it out on the society and the guardian.
Fight the law that allows this situation, not the people trying to do what’s best for the patient. Fight the treatment altogether. I’ll back you on those battles!
Dano, you are correct on many levels. One never knows what is about to happen. Everyone needs to make out their trust, and their medical directives. The reason I said not to just use the basic form is because it doesn’t cover enough, and doesn’t allow for different decisions in different situations. You can add mental health to the directive as well, and you should, imo!
When there’s an issue or treatment we are personally against, such as ECT, then most certainly list that on the directive as NOT being allowed under any situation.
I know some have posted without any personal knowledge of guardianship, and how difficult those decisions become. I don’t hold it against them. Everyone does the best they can for the time and place. At least that’s what I count on. 🙂
“By the way, Minnesota is one of those states that agrees with forced outpatient treatment and has codified it into law.”
I’m a little confused how the subject of AOT entered an exposition on ECT. Far as I know, ECT cannot be mandated under any AOT law.
It would be one thing if Minnesota having AOT made it seem draconian compared to other states, but a total of 42 states permit such outpatient orders.
Dr. G,
I for one am a proponent of ECT administered only with consent but readily acknowledge that memory loss can be severe. Nothing I’ve ever experienced has come close to the pain I suffered from depression in the eighties.
For you to compare depression to a scratch in the woods that became infected is far more egregious than anything I’ve heard any psychiatrist say about ECT.
Surely you’re aware of the high suicide rate among those with clinical depression. How many cases can you cite of death from an infected scratch?
By comparing it to the medical use of leeches you perpetuate the stigma suffered by those of us who’ve had ECT.
Many, if not most, of us feel we must keep our treatment a secret because people like you portray it so ludicrously. That turns my stomach.
If someone knowlegable as you supposedly are ridicules the treatment we chose, how can we expect the rest of society to refrain from judging us for having undergone the treatment?
With such talk of leeches and amputation you trivialize the suffering of those who’ve experienced the severest forms of depression.
I didn’t hesitate when I was offered a second chance at life. Years later I still consider it the best decision I’ve ever made and I know others who feel the same.
“..this type of treatment needs to be banned.”
drjean, I hope you were referring to the administration of ECT without consent and not to ECT in general.
I chose ECT as a last resort and am grateful for having had access to it. It’s been twenty years since my last treatment but some memories have never returned. What a small price to pay for having my will to live restored.
Wound infection — from scratches, bullets, stabbings, broken limbs, etc. — was one of the leading causes of death in the world until antibiotics and wound care were discovered. And amputation was a common procedure for dealing with infected wounds before the 1800s, so as to save a person’s life. So it’s no small comparison to make, since both an untended wound (no matter what its source) and depression can lead to death.
ECT is a treatment of last resort for depression because of its unpredictable memory and cognitive side effects, plain and simple. The problem is that professionals who either have a direct financial interest in forwarding ECT as a mainstream treatment (e.g., they make the ECT machines), or professionals who’ve staked their entire lives and reputation on the procedure (and so their conflict of interest is one of reputation, ego and pride), and the main proponents of this treatment.
It can be hard to find an objective source for ECT information when you go in for the treatment, because the professional who’s usually recommending it doesn’t appreciate the long-term potential side effects (side effects, I might add, that are virtually unheard of with any other modern psychiatric treatment).
ECT is an option, but it’s definitely not the first option for depression treatment and it’s something one needs to serious consider before undergoing.
Please give me an example of ECT being used as a first line treatment for depression in the past twenty-five years.
It’s possible, but it’s also likely that some unusual circumstance surrounded its use, such as a contraindication for meds.
You said:
“And to apply electrical shocks to it to combat depression is akin to amputating your leg because you suffered from a scratch while walking in the woods, which later got infected. It works, but it’s the crudest method imaginable. (Frankly, I put it a small step up from trepanation.)”
You compared amputating a leg to treat an infected scratch in today’s world to using ECT to treat depression. So, am I correct in taking your response to mean you are retracting the above quote?
Do you still maintain that treating depression with ECT is akin to treating illness with leeches?
I’m acutely aware of both the up and down sides of ECT treatment. Since having it twenty plus years ago I’ve shared experiences with countless others.
You’ve once again make a claim that doesn’t jive with my own experience or with that of others I know.
The side effects I experienced from ECT were a walk in the park compared to those of the antidepresants I took prior to ECT. Those were miserable and, in some cases, life threatening.
ECT never caused me life threatening side effects. On the contrary, It may well have saved my life. It never caused physical illness other than the post treatment headache which lasted most of the day.
The memory loss I experienced from untreated depression was on par with that caused by ECT. Prior to my ECT, family and coworkers related incidents for which I had no memory.
Again, I’m against ECT administration without informed consent and I agree that many psychiatrists don’t provide appropriate information. However, when you hold it up for ridicule, you may influence people to make choices that cost them their lives:
“So ECT is a treatment option and since science has shown it works (just as science once showed that leeches applied to the body “workedâ€), it’s available to anyone who is informed of its risks and chooses it as a treatment for depression.”
Again, I agree that it shouldn’t be forced on anyone and that it should only be used in extreme cases. I don’t agree that I made a decision on par with one to be treated with leeches.
In your original post you neglected to mention the life saving properties of ECT. Why no concern for the risk of suicide until I raised the issue?
I’m not disagreeing with you on the circumstances under which ECT should be administered.
I do object to your portrayal of those of us who willingly took the risk in hopes of returning to a productive life as those who would also resort to amputation for an infected scratch or leeches to treat any ailment.
Having the courage to undergo treatment is something I’m proud of yet those of your ilk reinforce society’s view that we should feel shame for submitting to a treatment you consider “…a small step up from trepanation.” We deserve better.
You’re taking my words out of context of the larger argument — our understanding of why ECT works on the brain is akin to our understanding of why amputation (or leeches) “worked” for wounds or illness 200 years ago. It’s a procedure that I believe, with more knowledge and time, will eventually go the way of these other procedures, because while it “works,” it does so in a only the most generalized manner possible.
Indeed, it takes courage (and risk) to seek out any type of psychiatric treatment today, regardless of the type. And I said nothing of such courage, related to this or any other type of treatment. I also said nothing of shame. These are all things you appear to be reading into an entry about forced ECT treatment on a patient who doesn’t want it!
Sorry, but forced ECT is wrong and that’s primarily what this entry is about. I’m not going to argue any further about ECT’s benefits and drawbacks, which I think are pretty clear from this exchange already.
I know this is an old post, but I feel strongly enough about my opinion to post anyways
From the looks of it, John M. , Psy.D. has absolutely no concept of sever depression.
‘gardener’ is correct in saying that he has trivialized the matter significantly.
Additionally, I feel that in the case of severe depression, ECT should be OFFERED if other treatments have failed. If your depression is actually severe, memory loss is a very small price to pay. (When I was severely depressed, i asked about ECT because I was willing to sacrifice ALL my memories to get rid of the depression)
BTW, gardener: 1, Grohol: 0
Yes, if people’s lives were a game, your score may indeed be correct.
But I don’t think people’s lives are a game for others to play with, especially when it comes to unwanted ECT treatments being given them against their will.
I agree that *all* currently allowed depression treatments can and should be OFFERED. But as you noted, that’s the key differentiation — offered. Not forced.
As for ECT itself, it’s always an option. But one that one should get all the information about its pros and cons before undergoing the procedure. I surely hope no one is making a decision about ECT based upon something they read on a single blog…
I need help. There is a court order to adminster ECT against my will. It’s been over a year now that I have been getting this horrid treatment every week and if I end up in the hospital I get it three times a week. I took a deal that I should not have taken when they went to renew the Price Sheppard. They offered to drop the Jarvis but they said that I would get a limited amount of treatments. Since August 09 when I took the deal they have given me so many I can’t even count that high. Last time I was in the hospital (HCMC) in Oct 09 they gave me three in a week. The first time that week they had to put me in restraints to bring me down to the room where they perform the procedure. Dr. Silver is the Doctor that is doing this to me at HCMC in Minneapolis. After my third course that week my brain was so fried that they got scared and stop giving me the procedure for four weeks. However, on November 12, 2009 they are starting them up again against my will. Dr. Silver will not talk to me and he has been doing this for a year and a half. I do not get any benefit from the procedure and since I have been off the ECT for a month I have been fine and mentally stable. I get a high dose of haldol in shot form and have not missed a shot in 7 years. That should be enough. I do not understand why the give me so many ECT treatments with no benefit. I have lost memories of my past and cannot function in life with this over my head. Why is doctor Silver and HCMC do this to me ? What benefit do they get torturing me like this? Please help me if you can?
I can’t go on like this for the rest of my life. I should have a idea of when this is going to end. The haldol shot is all I need. If they want to give me more meds I would be willing to take them just to have this nightmare end.
Sincerely Yours,
David Joseph Fox
612 840 7981
Even though I blasted him publicly at the time. He understands the dangers of neuraleptic medication. I sure he is better now. I had forced ect from dr. silver. But, it does not make him a bad doctor. He has the right idea but when I had him he was just starting out. He only had 2 years experience. Even though I blasted him publicly at the time. He understands the dangers of neuraleptic medication. Ect is the future and it has gotten better. But. he did give me too many. Howvever, he had my best inetrests in mind. He did not come from privalege like most doctors in america. He was in the Army in Isreal. Every one there has to go for a period of time. It is alot tougher to live in the middle east then it is in our country. He is an good doctor and he is only going to get better with experience. I have no idea how he veiws ect today. I have not spoken to him in two years. But, I do know he cares about his patiebts. The brain is very hard to undersand but we are getting better. He just needs to analylize patients better after each ect and maybe he is doing it today. Neuraleptic medication is the real danger. I realize`that today.
Shock treatments are evil. Especially, when they are forced on you. Three years ago I was at a state hospital without hope. A doctor approached me and said shock treatments would help and I would be free faster. I signed an agreement that would protect the hospital if anything bad happened. They started with Bilateral treatments. I was a zombie. For those that don’t know bilateral is, Its when they shock you on both sides of the brain. I would ask to speak to the doctor in order to slow down the treatments with no luck. A year later a I took them to court. They offered to drop the Jarvis order, if I agreed to another year of treatments. I stupidly agreed and they started giving me 3 ECT treatments a week. Even though they were giving me unilateral treatments, I was still a lot slower and memories were lost. They would bring me down in restraints to the operating room yelling and screaming. I asked to speak to the doctor in charge with no luck. They would say that it was out of their hands. Meanwhile, they were making a large sum of money off my medical insurance. The treatments made me worse and they increased my medicine as I was locked up every other month. In Jan 2010, I was assigned a new doctor and social worker. They took pity on me after 78 shock treatments and stopped them. Today, I have slight brain damage and no short term memory at all. I am hoping my brain heals completely. What I want all people to know is be careful if you choose ECT as a treatment. Make sure there is a overall limit to them and that they are low. Maybe 5 to 10 treatments total. I am convinced the hospital that did this to me was looking for some quick money. As I walk the city streets, people come up to me all of the time and I have no memory of them. I called Medicare to find out how much they were making of my insurance. The phone agent from Medicare told me that they made thousands of dollars per treatment. Nobody, can argue that money was not a factor. I just hope nobody goes through what I went through ever again.
Booooooo Hooo
ECT helps, your just a crazy coward off his meds.
If I am a coward at least I put my real name up
They’re at it again in Minnesota. I can’t believe they are doing this to people against their will. Terrorizing people to treat depression. Brilliant.
http://www.mindfreedom.org/shield/ellis-ect/support-elizabeth
Thanks Denise for posting that.
As I am sure you are well aware, Ms. Elizabeth Ellis, the subject of the forced ECT, has been forcibly committed to a psych hospital to have inpatient ECT because she didn’t show up for an outpatient session.
http://www.mindfreedom.org/shield/ellis/ee-3
We called it torture in when it took place in Communist Russia. But in the US, we call it treatment for someone’s own good even if they vehemently protest.
John, please do a story on this like you did with Ray Sanford.
Thanks!
AA
It’s surprising to me that there is not more of a public outcry about this. Having the police come and pick up a woman for forced ECT? Really? To help depression? Do they stop and think about the impact of the use of force on this individual’s psyche? Probably not.
It’s a reminder that people need to really research the mental health professionals they entrust themselves with. Not all support forced ECT, and I wouldn’t go to one who did.
OOOOOMMMMMGGGG!!!!!
You guys in MINN. need to LEAVE the STATE ASAP!!
Other states will auto send you to an overflowing animal psych ward for a few days MAYBE. Not enough beds usu. Then you can get out. In Mich., you can refuse meds and treatment, except in the STATE PSYCH wards, which you would’nt get in prob. if you tried. Other states are probably similar.
All I can say is PLEASE look at Dr. BREGGIN ESP. web site as ECT PERMANTLY DAMAGES YOUR BRAIN< and their is NO EVIDENCE IT WORKS!!!!! SO DO ALL PSYCH DRUGS< EVEN IF THE "SEEM" TO WORK FOR A FEW MONTHS< THEY WILL ALL EVENTUALLY STOP< AND IN THE MEAN TIME THE ALSO PERMANTLY DAMAGE YOU BRAIN & PERSONALLITY AND PHYSICAL HEALTH BEYOND BELIEF!!
I had forced ECT from Jan. – Feb. 1998 17 times and it has destroyed my life. It is barbaric, evil, and the head doctors who do this should be shot or have it done to themselves. I lost my daughter
and all of life. Family members, all abilities. ECT should be banned forever.
I know this is an old article and I’m not sure if anyone will read my comment but I’m very passionate about this subject and mental health in general.
I’m 27 years old living in Minnesota. At 18 I was diagnosed with severe treatment resistant depression, borderline personality disorder, Bipolar 2, severe anorexia, Anxiety and PTSD. I was diagnosed at 18, though had been struggling with all of this since early childhood. Starting having suicide thoughts at 10. Started cutting at 12. Started starving myself at 13. By the time I was 18 I was very sick. At 19 I had open heart surgery for a heart defect I had. 2 weeks after I attempted suicide by overdose and ended up back in the cardiac ICU on life support. Since 19 I have been in and out of inpatient psych, psych residential, eating disorder inpatient, eating disorder residential and many different outpatient programs. I have attempted suicide multiple times landing myself on life support multiple times coming very close to death. I’ve been very severely malnourished and low weighted to the point where I was almost put on hospice at 24 years old due to the fact that I was to malnourished and underweight to get my very much needed 2nd open heart surgery. If I had the surgery my heart and body would have likely given out and I wouldn’t have survived. If I didn’t get the surgery my heart would stop and again I wouldn’t survive. They weren’t sure I’d be able to recover and gain enough weight in time to have the surgery before my heart gave out. They weren’t sure if the damage I had done to my body would ever improve. Thankfully I did get the surgery in time. I had the surgery at 25. Still after the surgery I went downhill and had multiple more suicide attempts, lost the weight again, many more ER visits to get stitches for self harm, many more inpatient and residential stays, I paralyzed my stomach from the extensive damage I did to my body and am now completely dependent on tube feeding for nutrition and Iv fluids and IV meds through a port in my chest. They will never be able to reverse the damage to my stomach. I’m 27 now. Most of my life I refused treatment. Wouldn’t take meds. I was court ordered and put inpatient many times, I’ve been court ordered pretty much consistently since I was 20. I had to be court ordered to take my psychiatric medications. I had many medical emergencies called on me so they could force me to have IVs and Tube feeds due to low body weight, my blood sugar would plummet, my labs would be all over the place, my heart rhythm would be off, vital signs all over the place. I am almost always on a 1-1 the whole length of my inpatient stays. I’ve been in restraints more times then I can remember for my own safety. While inpatient I have managed to attempt suicide forcing them to transfer me to medical unconscious for 3 days, I’ve self harmed while inpatient multiple times requiring me to need multiple layers of stitches. I was NOT safe and a very very high risk to myself. For the longest time i could never go more then 3-4 months being stable before I’d end up back inpatient. Most of the time I was only out of inpatient a month tops before having to go back. 911 called on me multiple times for suicide stuff. I’ve had to be restrained by cops and forced into the ambulance or cop car to go to the hospital. I’ve been carried out of my house by several cops. Have had 4-5 cop cars and ambulance rush to my house. I’ve literally taken cops on “slow speed chases†thinking if I wasn’t breaking any driving law that they couldn’t pull me over until they had to track my phone till I stopped and they surrounded me and made me go to the hospital. I’ve ran down highways hiding in ditches to avoid being taken to the hospital. I’ve literally overdosed multiple times in the waiting room of hospitals or even when back in a room waiting to be admitted to psych so that I would “hopefully die†before going to psych. I’ve stopped breathing in ambulances forcing them to intubate me in route to the hospital. When I turned 18 I sobbed because I was so upset I was still alive as I had never wanted to live to 18. I would hide razor blades literally everywhere- in the back of my phone, in my car, taped to my body, in my bra, all over my room, taped into lamp shades, hidden in the air vents in my room, under my mattress, behind this wood closure in my closet etc. I never would be without a blade “just in caseâ€. I had to be searched everytime I went to the Er because they had figured this out. I always had a baggy of pills to overdose on if I was about to be admitted to the hospital- in my bra, in my purse, backpack, car literally everywhere again “just in caseâ€. I did not and would not allow myself to be alive. I have had both my parents, all 3 of my siblings, my sister-in-law, friends, my young niece and nephew everyone basically in tears, not knowing if I’d survive. I’ve had my mom be told to get a flight home days before she was supposed to leave because the doctors called her and told her they didn’t think I was going to survive the night after a suicide attempt while I was on life support. My family was taken into a private room to talk to the doctors and they were told to go to my ICU room and to say their goodbyes because they were preparing to take me off life support as “there was no possible way she will survive and if she does she will be severely brain damaged and likely spend the rest of my life in a comaâ€. I was 25 at the time. Last February I was admitted back to psych, for one week at one hospital and then I was discharged and a couple hours later the same day I was brought back to a different ER and was admitted again. The first hospital that week I had been admitted to while my mom was in the medical unit hospitalized, she’d been there for 2 weeks and had just had emergency surgery and was very sick. She was discharged a week later, the day before I was discharged from psych and then later that day had to go back. My provisional discharge was revoked that day and I was sent out of the psych unit, the next day, after refusing all my meds and all nutrition, a medical emergency was declared in order to “force†me to do ECT while they got a hearing for court to do get the official court order to force me against my will to do ECT. I began with 3x a week back in February. In the beginning I did not want to do it at all. The first couple times I would refuse to be taken down for the treatment- in which since they had the medical emergency declared followed by the official court order- I would be placed in restraints and brought down against my will. I was on a 1-1 the whole time I was in the hospital like usual. I had tried to escape, I had attempted suicide and ended up with stitches in my head, I was placed in restraints daily to begin with. I finally discharged from inpatient mid May. I then went down to 1x a week outpatient ECT, then every other week and now once a month. I spent Christmas and my birthday inpatient, though I’ve spent just about every holiday there is inpatient at one time or another. At one point in my life I spent over a year inpatient out of state from the age of 19 to 20. Away from all my family and friends. I missed the birth of my first niece and didint get to meet her till she was over a month old when my family brought her out to visit- a 9 hour drive for them one way.
I am 27 and am out of the hospital and stable for the FIRST time in my life. I am actually HAPPY for the first time in my life. I am living a life outside of hospital walls. I have not self harmed in any way shape or form for close to 8 months- the longest I’ve gone since I was 13. I have not attempted suicide for 8 or 9 months- again the longest I’ve gone since 19. I have not purposefully restricted my intake/fluids in order to lose weight in the last 8 months- the longest I’ve gone since I was 13. I have not had thoughts or urges for self harm or suicide since June, and even when I did have those thoughts in June they were not nearly as strong as they used to be and I did not act on them. I have had minor dips in mood here and there but not severe, not debilitating like before. I’ve had bits of anxiety and irritation here and there but usually due to not getting a good nights sleep or when my mom is struggling or in the hospital(she had another surgery in August and still needs one more in December). I am ready to live on my own, go back to work, go back to school etc. and I’m actively working on achieving all of that. The only reason I haven’t gotten back to work/school/live on my own is due to my mom having these surgeries and her needing to heal/recover, so I’ve stayed with my parents to help my mom, take care of the two dogs, take care of the house and grocery shopping, drive my mom to appts when needed, pick her up when discharged from her hospital stays after surgery etc. I am approved for section 8, in Ramsey county Mn and have an apartment out there but I’ve decided not to renew my lease there and have already cleared my apartment out and moved it to storage. I’m working on transferring my section 8 to Hennepin county and finding an affordable apartment in the suburbs of Hennepin county closer to the plymouth area which is where my family lives and I grew up.
I am willingly taking meds, doing treatments, keeping up with appts and anything else needed or recommend.
I’m back to hanging out with friends and family. I leave the house and go do things. I’m smiling and laughing and feeling/experiencing joy!
So as you can tell I’ve had a very long and extensive journey in my short life.
Are you telling me- it was WRONG for them to force me against my will to do ECT??? At a time where I was incapable of making heathy decisions for myself?? Where I was incapable of doing what was in my best interest?
Because had they not done ECT and forced it on me, I would not have done it. I would have either ended up in Anoka State Psychiatric Hospital for many years to come, or I would have gone home and been miserable and in and out of hospitals the rest of my life. Or, the most likely outcome, I would have at some point whether it had been in the near future or down the road, I would have finally succeeded in killing my self some way- either through overdoses, self harming to severely, or through extreme malnutrition by starving myself to death or a combination of all 3. I would NOT have survived or lived a life worth living had they not court ordered me to do ECT.
Are the side effects tough?? Yes. Does the memory loss suck? Yes. Is it fun? No.
But is it worth it?? HELL yes.
The multitude of side effects I was dealing with due to my mental health were FAR worse and more debilitating then the side effects I have had from ECT.
I am so thankful, every single day, that I was forced into doing ECT. Forced into taking my meds. Forced into maintaining my weight with my tube feeds and IV fluids/meds. I would NOT be alive today had they not. And if I was alive I’d still be absolutely miserable.
Should ECT be the first line of treatment? No will it work for everyone? No should it be forced on every person they think needs it? No
BUT I’m extreme/severe cases- where literally everything else has been tried then a person should be educated on ECT and all the pros/cons and risks. They should be given the choice of trying it. If they refuse-
Then depending on the situation- depending on if their life is at risk, if they are an extremely high risk of hurting themselves or others, if their is a high probability of them continuing to be in and out of the hospital and being miserable and likely ending up dead, if they are to sick to make a health decision or choose what is in their best interest- then YES I completely 100% without a doubt believe the courts/doctors etc should have the ability to force an individual to participate in treatment, including ECT.
It should be the last resort/option, but it should ALWAYS be an option in extreme cases.
I did ECT 3x a week from Feb 2020 to Mid May 2020 and then once a week for about a month, then every other week for a couple of months and now finally once a month! I will continue doing it at whatever frequency is recommended to me for as long as they suggest and as long as it continues to help.
I am SO happy I have had ECT. Because I’ve never in my life been able to experience or know what it’s like to be happy and feel joy. I’m 27. I have not been truly happy since I was 5 or younger. I remember even at 5 having intense anxiety, especially in social situations like school, a horrible inability to make and maintain friendships, depression and I was bullied severely all throughout school. And finally after 27 years of misery I am HAPPY, enjoying life and actually WANT to live. I seriously, as a child, used to pray every single night that God would please please let me not wake up the next morning, to please let me die in my sleep so I could escape my tortured mind.
So unless you yourself have PERSONALLY experienced SEVERE suicidal thoughts, SEVERE depressed moods, and have tried EVERY possible other treatment option and it still never helped, unless you have been in and out of locked units for years and years for months at a time. Months at a time of not being able to see any loved ones, only being able to talk to your parents once a day for 15mins for months and months, if you have personally felt so miserable that death literally seemed like the only solution and option to escape your misery and that it was what was best for your loved ones due to how much of a burden you felt like and how much you’ve put your loved ones through. Until you have woken up in ICU units with a tube shoved down your throat to breathe and not realizing where you were or recognize anyone around you. Until this has been your life for as long as you can remember. Then you have NO right to judge the treatments, NO right to judge what is available to us and what lengths professionals or families have had to go to in order to keep an individual safe, to try to improve that individuals life.
You have NO right to sit here and tell people about how “bad†ECT is and how “disgusting†it is for someone to be forced into a variety of treatments. You have NO right to post these things- that could end up convincing a person who reads it to not do a particular treatment that could very well SAVE their life.
So until you have experienced all of this yourself- then you will never understand.
I will respect people’s opinions no this topic- but only the opinions of people who have personally gone through it and no what they are talking about.
Have a good day.
By the way- I’m still doing VERY well mentally in the midst of a pandemic i situations that usually would cause my to spiral very quickly and land in the hospital. To this day I still have many medical issues- my heart is doing great though thanks to my surgeries. But my stomach is not due to the extensive damage I’ve caused it from my history with anorexia and my multiple suicide attempts. I am still dependent on 24/7 tube feeds into my intestines and likely will be the rest of my life. I still have my port and get IV fluids 3x a week and IV nausea meds daily both in my home. I still can’t eat more then a few bites a couple times a day without vomiting a ton or being painfully nauseous to the point I can’t do anything and that no med helps. This will be likely the rest of my life. I am waiting doe yet another surgery on my stomach to hopefully improve symptoms and quality of life though it likely won’t work I’m which my next step and only option is to literally have surgery to remove my ENTIRE stomach and I’m not even 30 yet. But you know what?? I can handle that just fine now that I am actually HAPPY. I can and will get through anything life throws at me as long as my mental health remains stable, I remain relatively happy. As long as I have those things I’m addition to my family, my few friends and my 2 dogs then I don’t care what happens to me medically. For once I am HAPPY to be alive and WANT to be alive.
So if those are bad things- things that have been caused by ECT- then I guess I’m screwed. But I think those are all good things, things that make ECT worth it for me.