Monday, December 31, 2012

Healthy Living and Treatment

As many of you know, I have been attempting to follow a Paleo diet (grain-free, only meat, veggies, fruit, and nuts) to help treat my bipolar disorder. Some of you have asked how it is going since you are looking at various gluten and grain-free diets for your treatment as well. First of all, I have to say that the diet works great. I am much more stable and feel a lot better when I can stick to my healthy lifestyle of diet and exercise. However, I do have the added issue of a binge eating disorder which I think is what throws me off from being able to maintain my diet.

I really realized this past week that I have no control over my food. My husband has been home all week from work so I have not gone anywhere without him. As long as he is with me I don't stop at fast food restaurants or get gluten-free desserts from the grocery store. Today was the first day I went out by myself and I stopped at the grocery store. I was hungry, and even though I told myself I didn't need anything sugary and I could eat as soon as I got home, I bought a gluten-free dessert! It's like I need a 24 hour babysitter just to stick to my diet. I ate a few bites and then threw the rest out, which is better than what I would have done before, but still, I can't believe I am so addicted to sugar that I eat it when I know I should not.

I try to remember that this is all a learning process though. Each time I have a setback it teaches me something about who I am and what I need to do to be well. We have been eating Paleo all week and this morning was the first morning I woke up not exhausted and miserable, which means the diet and exercise works if I can just stick with it. I realized at the store today that I can't leave the house hungry and maybe I should just not be grocery shopping for a while, at least not by myself.

The last thing that became abundantly clear to me this week is that an essential part of being able to stick with a healthy lifestyle is having a good support system around you. This is why my husband and I have decided to do a Whole30 (a really strict Paleo plan for 30 days) with our CrossFit gym starting Jan. 1. The coaches at our gym are great and give us a lot of advice, motivation, and support so we will not be alone during the process. We are also starting a Healthy Living Group with the Carolyn L. Farrell Foundation for Brain Health where we will support each other in whatever healthy living choices each of us needs through meetings, online support, and motivational materials. (If you live in the Cleveland, Ohio area and want to join us, let me know and I will get the information to you when we get the time worked out.)

Graphic from Whole9
So, whatever your healthy living choices are, at the start of this new year, get your support system in place. If you are looking at a Paleo diet, I recommend Whole9 as everything is easy to understand, they have researched how food affects our mind, they have the Whole30 program, a great online forum, and their book: It Starts With Food.


Rev. Katie

Saturday, December 22, 2012

I Am Not a Monster Even If the NRA Says I Might Be

According to the National Rifle Association's (NRA) executive vice president Wayne LaPierre concerning the issue of mass shootings:

"The truth is, that our society is populated by an unknown number of genuine monsters. People that are so deranged, so evil, so possessed by voices and driven by demons, that no sane person can ever possibly comprehend them. They walk among us every single day and does anybody really believe that the next Adam Lanza isn’t planning his attack on a school, he’s already identified at this very moment? How many more copycats are waiting in the wings for their moment of fame from a national media machine that rewards them with wall-to-wall attention and a sense of identity that they crave, while provoking others to try to make their mark. A dozen more killers, a hundred more? How can we possibly even guess how many, given our nation’s refusal to create an active national database of the mentally ill?" (highlighted emphasis mine.)

X-Men: Wolverine. Photo by Jeff Norris
I just have no idea what to say to this. I am pretty sure I, and thousands of other people with mental illness, just got pegged as evil monsters who should be put into a database so that our country can watch us. Really? I mean, this is so ludicrous to me that I can't even believe someone said this. I feel like I am watching X-Men and I just got put on the mutant registration.

We mental health advocates have talked until we are blue in the face about how studies show mentally ill people are not violent and that not all mass shooters have a mental illness. As NAMI states "One in four American adults experience a mental health problem in any given year, yet the U.S. Surgeon General determined over a decade ago that 'the overall contribution of mental disorders to the total level of violence in society is exceptionally small.'" Do people not read scientific studies? Do they not believe them? I could write another post like my previous one about not assuming all people with mental illness are violent, but for the people who really need to hear it, they will never listen. (Read NAMI's official response to the NRA here.)

We actually already have limits around mental stability and the ability to buy a gun with the National Instant Criminal Background Check System where they do not allow guns to be purchased "by any person who has been adjudicated as a mental defective or has been committed to any mental institution." This is an attempt to identify people who might be a danger to themselves or others if they had a gun. However, it is hard to define what "mental defective" means and many people who have ben in mental institutions might be perfectly safe with a gun. I mean is there a time limit on this list because if you were in a mental institution when you were a teen and now you are 50 years old and have had no recurrence of your illness, are you still "a mental defective," for life? That seems unreasonable to me and just increases fear and stigma. I am not arguing that any list like this is not a good idea, just that we have to be careful how we implement it and we don't add to it language such as LaPierre used to misrepresent what mental illness really is.

And that is what I want to focus on for this post, that statements like LaPierre's which use labeling and hateful language just increases violence in our world, in particular more violence against a group of people who are already more likely to be victims of violence than the general population.  

First of all, to me, the ultimate in violence is hatred and creating an us vs. them mentality. When we separate ourselves from all of humanity, saying we are different than another group of people, then we give ourselves permission to treat these "others" as less than human. Calling them monsters. Creating lists for them to make sure everyone can judge them. Casting them out and locking them up. Statements like LaPierre's encourage violence, oppression, stigma, and scapegoating.

Second, I feel like LaPierre's statement is a disgrace to the many people who own guns and don't act with such hatred and ignorance. I know many people who own guns for hunting or shooting at the range. My Dad used to go shooting once a week with his friends. I know parents who have the most fantastic kids ever, and they go shooting together. Guns are not something I would choose to have around because I think accidents can happen no matter how careful you are, but I do think there are many responsible and caring gun owners out there. None of these people would say such disgusting things about another group of people. LaPierre's statement is a bad representation of people who own guns and I hope that responsible gun carriers stand up against someone like LaPierre.

Third, statements like this, even if we don't end up with a database, once they are said, discourage many people with mental illness from seeking treatment because now we are branded as potentially being monsters, evil, and mass shooters. We know that most people do not understand mental illness enough, even many professionals, to be able to deem who might one day become violent enough to hurt another person. So no one, even people with mild depression or anxiety, is ever going to want to seek treatment when that might mean they are now seen the the eyes of our world as a monster. This means people are going to live in pain, fear, sadness, and never get help because they are scared that everyone will fear and hate them. Already people treat you differently once they find out you have a mental illness. LaPierre's statement, even though I assume he did not mean it to apply to every person with mental illness, was so broad and filled with vitriol and hate that it increased hysteria and has already made our world, with it's inadequate knowledge of mental illness, more unsafe for people like me.

As my eight year old son asked me "What would happen to you Mommy, if you were put on a list?" While we tried to explain to him that this probably won't happen and if I were on a list for gun control purposes, I don't even want a gun so it would probably not affect me, he knows that as soon as you are called out on a list as different and scary, you are at risk for violence.

I hope that more people speak up about the issue of using hateful language and increasing mass hysteria at times like these. I hope we talk about how wrong it is to promote the idea that violence in our country is always someone else's fault when really it is something that we all need to help take care of. We can't unjustly blame one group of people so that now we have a scapegoat whom we can persecute and harm.


Rev. Katie

Wednesday, December 19, 2012

Treatment Isn't Easy

Treatment for mental illness has been in the news quite a bit lately due to the Newtown, CT shooting and then a blog post that came out from a mother with a child with mental illness. There have been many responses from people with other children who have similar issues and the difficulties in getting treatment. Some say they can not get enough help, and then there is an issue brought up by one mother that we need to accept that medicaiton is a good option for kids.

I am glad we are having this conversation and I cannot say what treatments I think are the "right" ones. In reality, I think that treatment is different based on every person. And that is why I think it is important to speak to the fact that for most of us there is no easy solution to treatment.

I have had different mental health problems since I was 6 years old but did not start to receive treatment until I was 19. That means I have been at this treatment thing with psychyatrists and psychologists for 15 years. And clearly we know from my blog posts that I am not free from my illness. For many of us, treatment is just not that easy.

Photo by Jeff Norris
First there is the issue of medication. Many people think if all mentally ill people just received medication and kept up with taking it that we would all be free from our illness. You can see through many of my previous posts that medication has not worked for me and actually caused severe side effects. It is promoted by many doctors and the media that most side effects include things like weight gain, nausea, lack of libido, sleep disturbance, dry mouth, and other things that people say we can put up with in order to be free of our illness. First, unless you have experienced those side effects, you don't know that for many people they are pretty debilitating and life altering. Furthermore, most people don't tell you about those of us who have severe side effects like decreased cognitive functioning, organ failure, heart disease, and more. We can not present medicine in simplistic terms and assume it is safe and/or effective for everyone. There is always the argument from people who see better behavior in an individual on medicine and then get angry when the person goes off the medication. However, if the medicine were really working, we would keep taking it. Clearly it is not working well enough if we stop taking it. Either it is not controlling the irrational thinking enough so we think we don't need it, or the side effects are so bad that we stop taking it. Medication works for many people but we should not judge those for whom it does not work. And finding the right medication is hard. It may take 8-10 years at the minimum to find the right medications. We need to be understanding when the illness is not treated quickly and easily.

Second there is the issue of all the other lifestyle changes doctors suggest for treatment such as exercise, diet, sleep schedule, and meditation. Everyone I know, regardless of mental state, has a hard time keeping a balanced life at all times. For people with mental illness, it is especially hard to do so and we have less wiggle room for how much can get out of balance. In college, other people could barely sleep for a week and be just fine functioning. They would need a few days of extra sleep and could get right on back on track with life. For me, one night of bad sleep meant possibly weeks of worsening symptoms and I needed a lot of help to get back on track. Here again we need to be compassionate about treatment. If someone can not keep the perfect diet, keeps forgetting to take medication, has issues sleeping, etc... that does not mean they are not trying. The worst thing you can do for someone trying to make positive lifestyle choices is to argue that because they don't stick with it that they are failing and need to learn to make better choices, or that they just should not do it anymore because it is clearly not working. Our lives are worth fighting for.
Photo by Jeff Norris

Third, people also have co-occuring disorders so they may have many road blocks in their treatment plan. Such as for me diet is a huge help in my treatment but I also have a binge eating disorder which makes it very hard to stick with the right diet. If you have PTSD it can sneak up on you in times that you would not think have anything to do with a past traumatic event so watch out for that getting in the way. If you can find the link it is often something you can work through. What I really like about my therapist is that he looks at every "setback" as an opportunity to learn more about me and what we might need to work on in order to help me be healthy. That is different than the usual mentality that if you do not get better instantly you are not trying hard enough, make bad choices, and you won't ever get better.

Last, there is the inevitable "if this is an emergency dial 911" message on your doctors phone. Many doctors and other people think if you go to the psychiatric unit you will be cured, but that typically is just between a few days and a few weeks of treatment. It takes at least six weeks just to see if a medication has a chance of working for you. And there is little support for how to live life out of a treatment center. Honestly, most of us can't keep going back into the hospital and we need much more support in our every day life than most of our communities and insurance companies (if you are even lucky enough to have insurance) are willing to give us. You see a therapist and/or psychiatrist every day in a facility and then in regular life you might go to therapy once a week and see your psychiatrist once every six weeks. You have none of the outside stimulus, none of the people and situations that might contribute to your illness, and far less that can trigger you in a facility. Then you go back into the same life you had before and don't know how to manage. Going into treatment is beneficial to many people but the success rate could be even higher if we didn't just assume a few weeks in a hospital cured everyone and if we had better programming out of the hospital. Good care for a psych patient includes a plan after the hospital. A great start is if you have a loved one who is in a facility, to think about what changes you might need to make at home to help them keep up with treatment or how much assistance they might need with taking meds, eating, sleep, and exercising.

All this is to say, treatment is not simple and I don't know that we always have an understanding of how complicated it is. Some people ask me why I would write my blog if I am not "cured" or my illness is not under control. I write because my situation is much more common than we think it is. It can feel very lonely to look for resources on mental illness and often have it portrayed that there is a simple fix- if we would just take our meds and do what our doctors tell us. I wish it was not that hard. I wish there was a simple solution for everyone. Sometimes we have to just keep trying even if it does not work over, and over, and over again.


Rev. Katie

Participate: Ask The Rev.

This week I have had many conversations with people about mental illness and got a lot of different questions. In order to keep the conversation going, I would like to start an "Ask The Rev." column where I answer questions people send in to me. If you have a question you would like me to address on the blog, please email me at katie @ farrell foundation . com

I will try to answer every question I get as honestly as I can. If it is something I am not comfortable with answering, I will let you know. Or if it is something I do not know enough about I will reach out to others for research and maybe some guest posts. I will leave your name and information out of the blog post unless you ask me to mention you.

Please send me your questions!


Rev. Katie

Monday, December 17, 2012

In Response To: "I Am Adam Lanza's Mother"

Part I:

A blog post went viral yesterday called "I Am Adam Lanza's Mother" from a mother, Liza Long, who says she has a 13 year old child with mental illness although they are not sure what he has since he has been labeled to have quite a few different things. She describes her son "Michael" as violent, pulling a knife on her, and threatening to kill himself. She talks about how frustrating it is that people (although no psychiatrists or psychologists are mentioned as being consulted yet) have not been able to find the right medications to help him and there is no way to get intensive help without charging him with a crime and sending him to jail. At one point she says "I am sharing this story because I am Adam Lanza’s mother. I am Dylan Klebold’s and Eric Harris’s mother. I am James Holmes’s mother. I am Jared Loughner’s mother. I am Seung-Hui Cho’s mother. And these boys—and their mothers—need help. " She is trying to bring to the conversation the fact that parents with children who have mental illness, especially to this degree, really need better medical care for their kids.

I shared this woman's post on my facebook page because I found her perspective not only heart-wrenching but also interesting, and eye opening. I am grateful that she shared her story and hope it raises awareness about the need for better mental health care. At the same time I can see how a blog post such as hers can be blown out of proportion and raise hysteria about mental illness. (I also have further concerns which I mention in Part II of this post below.)

Those of us who have lived with violent people, will hear in Ms. Long's post the fear, anxiety, sadness, and fervent prayer that their loved on will get the help they need. It is traumatic to live in fear for your life. It is devastating to watch a loved one become violent and all you want to do is help them. Seriously you just want to ask "What is wrong with this world that we can not get people the help they need? No one should suffer this much."

I worry that people who do not know personally situations like these may not hear the undertones of her post and instead interpret the sensationalized "I am Adam Lanza's mother" statement as proof that mentally ill people become mass murderers. I fear that this post will encourage the public to focus more on the idea that any kid or person with mental illness, especially one who exhibits any violence, will be considered another Adam Lanza, a mass murderer, instead of focus on our need for better care for mental illness. I don't want her post to be seen as "Here, here is proof that mentally ill people are killers. This lady even admits her son is the next Adam Lanza."

Part II

After I wrote Part I of this post, a friend let me know about the post You Are Not Adam Lanza's Mother and this other blog post: Want the Truth Behind "I Am Adam Lanza's Mother"? Read Her Blog by Sarah Kendizor and Sarah's update post too.

Ms. Kendizor's post about Liza Long sounds much like my initial reactions to the "I Am Adam Lanzer's Mother" post. I find many of Liza's other blog posts concerning and I was surprised to read that she teaches ethics at a college. I can't imagine talking about my child the way she talks about her kids. I thought Liza's act of saying her son is basically a mass murderer by claiming him to be like Lanza was unfounded and extremely detrimental to her son. (As I wrote about here.) My initial reaction to her post was that she was demonizing her son, had pegged him as a violent threat to society, and never considered how this would harm him for the rest of his life. She changed his name in this post, but calls him by his real name in many of her other blog posts. All I could think is that I wish she had read my post, Tips for Responsibly Posting About Kids because she had just seriously hurt her son with this post. If you want to read a much more respectful and powerful post from another mother with a child with mental illness who is sometimes violent, read Leisel's post Dear Mr., President We Have a Problem: My Son is Mentally Ill. I'm Scared.

Yet when I wrote Part I I tamed my critique of her and tried to look at her with a more compassionate eye as a mother who was terrified that her son could hurt himself and others. I understand the fear of a violent loved one. I tried to be a more compassionate minister and thought maybe I was just being too harsh on her blunt satirical writing style which other people seem to think has an honest edge to it. Reading Sarah's post though, I am reminded to follow my initial instincts.

I was very concerned that in all she says about the help she has gotten for her son, she never mentions a psychiatrist or psychologist except a referral to a pediatric psychologist from an emergency room visit with no indication that she actually took her son to the psychologist. Even though she has a 2010 blog post about her son going to the psych ward for saying he was going to kill himself. Then what appalls me in that suicide post is that she says suicide is lazy and selfish. She speaks with care and worry about her son's suicidal thoughts and yet she basically calls him lazy and selfish. How is that helpful at all to a child with mental illness?

People really need to know that one of the things which can make mental illness 100 times worse than it has to be is family who treat you poorly and judge you because of your illness. It increases the symptoms of your illness and adds to the negative thinking that leads to suicide. Mental illness is made worse by your environment. Ms. Long, in my opinion from what I read on her blog, is contributing to her son's illness. (I don't know her personally so I am fine with entertaining the possibility that I am wrong here. And note that I say "contributes" not "causes.")

I wish she could have written about the situation with her son in a more compassionate way and not linked it to a mass murder. 

My suggestion is to read Liza Long's blog posts for yourself and decide what you think about her statements. I do believe though that three definite things came out of the "I Am Adam Lanza's Mother" post:

1. Her son has been irreparably hurt by Liza's actions. He can probably add trauma to the list of things he will be dealing with now.
2. The stigma that mentally ill people are violent was perpetuated.
3. The issue of accessible, quality care for mental illness was brought to the forefront.

UPDATE: Here is another post to ponder: I Am Adam Lanza's Psychiatrist.


Rev. Katie

Saturday, December 15, 2012

Blaming Mental Illness for Tragedy Harms Children with Mental Illness

Sadly we have had another tragic shooting in America. This time in Connecticut twenty young children and six adults were killed. There are no words for how horrible this is. The sadness of this event is felt by everyone in our country and I can only imagine how their families and the community of Newton, Connecticut are feeling right now. My heart goes out to them and I pray that they feel the support and love of our nation with them.

Always the first question after an event like this is "Why did this happen?," and rightly so. We really want make sense of things, to feel like we have some control again so we can have a bit of stability back. It is always very hard for me though to read dozens of comments on Facebook saying: "if only we had a better mental health care system things like this would not happen." Or news articles which say the motive for the shooting is a "mystery" but then adds that the brother of the shooter says the shooter "has a history of mental illness."

As blogger Kate Donovan writes, when you blame mental illness for such an event, this is what you are saying:
"Here is a terrible thing. The only thing that could possibly cause someone to do such a terrible, tragic thing is to have This Disorder. Because only people with This Disorder could be so dangerous/awful/scary."

This assumption of mental illness is extremely detrimental to people with mental illness, but especially so to children with mental illness. I have had mental illness since I was a child and this belief that only people with mental illness do bad things is extremely terrifying.

There has been a lot of great advice of how to talk about this shooting with your children because even kids who live no where near Connecticut can be traumatized by just hearing about the shooting on the news. Now just imagine if you are a child with mental illness and you hear over and over again that only "crazy" or "mentally ill" people do things like this. Some parents, in order to explain why this happened, tell their children that the shooter "had a sickness in his brain." Then as a child you hear other kids in school saying that people who are "sick in the head" do things like this.

You learn at a young age that you are to be feared, not trusted, and you are a danger to society. You learn that it does not matter if you have a good heart, save every stray puppy in the neighborhood, and care deeply about other people. If your brain is not right you could end up just like this person who did something horrific. There really is no way to describe the fear you feel as a child hearing everyone around you put you into the same category as a killer. I can attest to the fact that it does traumatize you for life, leaving you with a feeling that you must be a bad person and just don't know it. It means every time an event like this happens you are thrown into a terrible state of panic where for days or weeks you can barely function and never sleep.

UPDATE: After I posted this originally, Liza Long's blog post, "I Am Adam Lanza's Mother" went viral. I have a response to that and how it might cause people to link mental illness to violence but I wanted to add to this post how I feel Long's post might affect children. 

I hear that Long was writing from a raw emotional place and so her post was very honest. I did feel that comparing her child, "Michael" to Adam Lanza would be extremely devastating to him if and when he reads the article. Also, I know that any child who hears about the post and who has mental illness, especially with any violent tendencies or thoughts (which may never turn into violent acts), may fear that they will be the next Adam Lanza. Hearing a mother liken her mentally ill child to a mass murderer could easily scare kids into wondering "Am I Adam Lanza?" 

(Read more about the "I Am Adam Lanza's Mother" debate here.)
So, I ask you to PLEASE think before you speak. Don't throw mental illness out as the reason for an event like this. Think of the message you are sending to the nearly 4 million kids in America who have mental illness. We don't need to add extra trauma to a nation of children and adults who are scared and hurting.

UPDATE: Here is another great article on this subject: The Pain of Being Linked By Asperger Dx to a Mass Shooter.


Rev. Katie