Please Visit My New Site

Thank you for visiting! I have created a new site that houses everything you need in one place. It has a blog with my writing about dementia, mental illness, and body positivity. The site also has the information about my new book coming out in April 2015 and information on hiring me for speaking and teaching opportunities.

Please visit my new site at www.RevKatieNorris. com

Blessings,

Rev. Katie

5 Things Wrong With The Focus on Lewy Body Dementia as Robin Williams' "Reason" for Death By Suicide

I just saw this headline today: "Robin Williams driven to suicide by Lewy Body Dementia." I have so many issues with this and I wanted to share a few of the problems this headline brings up in our culture today.

Katie and her Mom working on an art project made to be accessible for the stage of Lewy Body Dementia Carol had at the time, in 2011. Copyright K. Norris. 

Many of you may know that my Mom has been living with Lewy Body Dementia for eight years now and I live with mental illness. I also work with people in both of these categories. What concerns me is that the reactions I have seen on social media from people upon reading this story about Robin Williams fall into these areas:

• "Now it makes sense."
• "If he was hallucinating he must not have been in his right mind and the suicide must be because of hallucinations."
• "Now I feel so bad for him, this must have been so difficult."
• "I would not want to live with dementia and hallucinations either, or the possibility of loosing physical ability. Now I understand the suicide."

These comments show many misguided ideas about suicide, mental illness, dementia, and disability, and I have outlined a few of these issues below:

1. A need to justify suicide. Our culture seems to have a need to justify suicide, to find other reasons for death by suicide rather than mental illness. Depression or another mental illness is "not enough" of a reason to die by suicide. Apparently, suicide is only justified if you are going to be physically or mentally incapacitated at some point. (Many people ignore the fact that many forms of mental illness render you physically and mentally incapacitated.) This is just a wrong way to look at suicide for many reasons, some of which I will mention below. Overall, death by suicide is usually an outcome of an illness, just like death from cancer is often an outcome of cancer. If we keep needing to find ways to justify suicide, then we have no compassion or understanding when suicide takes the lives of those we judge as not "sick enough" to die by suicide. 
2. Implying physical disability is so terrible no one would want to live while disabled. The reason people are so focused on Robin Williams having Lewy Body Dementia is that is dementia with Parkinsonism, meaning you loose functioning of your body as well as your mind. It is also a dementia that often comes with hallucinations. For some reason, our culture sees loss of physical ability as one of the worst things and assumes, of course, no one would want to live like that and death by suicide is justified. This is so wrong. Many people with physical disabilities would take great issue with this concept. By promoting this idea, we are essentially saying that people with physical disabilities have less worth and dignity and probably should not be here. Some of us may see significant loss of ability (mental and/or physical) as something we would not want to live with. That is a personal belief and a choice a person may have to make at one time. However, we can not promote the assumption that "obviously" anyone who is disabled "enough" would want an end to their life. For a good summary of the issues around this, please visit the site, Not Dead Yet. 
3. Claiming mental illness is not a "worthy enough" illness. I am so tired of people not understanding mental illness as a real illness and always needing to try and cover it up through another, more "worthy" illness. This is why people make the "Now I understand" comments about this story, because apparently mental illness is not a real illness with an understandable outcome of death by suicide. Robin Williams was struggling with mental illness and addiction his whole life. I wish we would have had more compassion for him during those dark times rather than only having compassion for him after death when it is revealed that he had a "worthy" illness, such as Lewy Body Dementia. Since my Mom lives with Lewy Body Dementia and I live with mental illness, I could not imagine saying that death by suicide due to her illness was more "worthy" and "acceptable" than due to my illness. Both illnesses are devastating and come with a risk of death by suicide. 

   

   Katie and her Mom, Christmas 1996. Copyright K. Norris
4. Implying that anyone with dementia would not want to live, which harms people currently living with dementia. Dementia is a complex illness which manifests differently in every person. When we talk about it in such a blanket way and promote misinformation about it, we perpetuate the idea that dementia is so horrible, no one would want to live with it. People live well with dementia for years. Some dementia progresses very slowly and it may be ten years until the person gets into late-stage dementia. Some people may want their life to end earlier than late stage dementia, and I can understand that. Other people may not want that. The point is, when we have these conversations, we need to acknowledge that this is personal choice and the choice of one person is not the spokesmodel for all people. When we frame dementia as a reason for death by suicide, we are sending a message to all people living with dementia that their life will be so bad, they might as well not be here. That is devastatingly sad. I know so many people living well with dementia and I hate that they will see dementia framed in this way.
5. Perpetuates shame of death by suicide. I feel terrible for those who have suicidal ideations or who have had suicide attempts that see this conversation about Robin Williams and dementia. What are we supposed to think about ourselves? That we need to be "sicker," or we need to suffer more in the world's eyes in order to have suicide be part of of our illness and part of our life story? We for sure know we can not talk about suicide for fear of being told that we are being selfish and that suicide is not real, unless you have an illness someone else deems "bad enough." Also, many people who need help, won't ask for it and won't get treatment because suicide is, again, cloaked in shame and the idea that anyone who dies by suicide is bad- unless they had some acceptable other illness.    

Katie and her Mom, Christmas 2013. Copyright K. Norris.

I live, every day, seeing the impact Lewy Body Dementia and mental illness have on people. I know death by suicide can be a result of both illnesses. I know that both my Mom and I have said "I want to die" due to our illnesses. I also know that it would be wrong for anyone to look at me and my Mom and say one of us had a "good reason" to die by suicide and the other did not. What we really need is more awareness of the different illnesses of the brain. We need to focus on quality of life, worth, and dignity. Mom and I both want the same thing, a life of meaning and purpose, with dignity and respect. We can work to make that a reality for people with all kinds of brain illnesses- even dementia and mental illness. We may or may not decrease the numbers of death by suicide, but we will decrease the shame around both of these illnesses and increase the likelihood of a better quality of life and more compassionate care for all.

Blessings,

Rev. Katie

Lessons From My Parents: What Does Farting Have to Do With Love and Commitment?

This, by far, is one of the weirdest posts I have ever written. 
Or, at least the weirdest title, but you have to have a catchy 

Rev. Katie with her parents. Copyright, Rev. Katie Norris

title if you are a blogger. 

I dedicate this post to my Mom and Dad who have taught 
me so much about life and relationships.

_____________________________

I just saw this great video from the Button Showcase at the 2014 National Poetry Slam and it reminded me of my parents. It is called "Hotbox Love" by Jesse Parent, and while it starts off a bit unconventional, it gets to the heart of what love and commitment is. Basically, the poem is about farting- if you can't handle it if your partner farts, you should not be together. Seems trivial, but you see farther into the poem that what he is talking about is being able to see the beauty in the disgusting and difficult parts of life.

As Jesse Parent says: "...conversations on a toilet. If you can't love me in this awkward space, just live in this filthy, stinky moment, what are you going to do when it really gets bad?...Can you still love me showering me in a chair, wiping my ass as I sob 'I'm sorry' at you, putting my underwear into a trash can without saying a word?"


As a I have counseled people in preparation for marriage, and in the midst of divorce, what most couples struggle with is understanding how to manage life when it does not go as planned and life is ugly. I am thinking now I should just show them this video. And yet, most people don't believe this stuff and think the only couples who can see the beauty in the ugliness are those with perfect relationships, outside of a few hard times.

My parents have been together for 53 years and by far it has not been a walk in the park for them. Yet they saw the beautiful in even the ugliest times. I see how different this love and commitment is when my Dad and I care for my Mom who has Lewy Body Dementia,which has left her unable to move and confined to a bed or wheelchair. We change her adult diapers together, and he does not say a word as he throws her underwear into the trash can. While I also do these tasks for my Mom, it's not the same. I don't like it and it it's not easy for me. It's a different kind of love and commitment, which you can see on my Dad's face as he lovingly takes care of her and only sees beauty where other people would see something far more disgusting than, as Jesse Parent talks about, farting in the bed.

My Mom would love this poem because she and I always used to joke about couples being comfortable farting in front of each other, particularly in bed. We even made up new words to the song "Wind Beneath My Wings" and called it "Wind Beneath My Sheets." She thought that kind of comfort with each other was not only funny, but gravely needed if a relationship was ever going to survive.

When I think all of that my husband and I have gone through and all the times either one of us has contemplated divorce, I know that the only reason that has not happened is because even in the darkest times, we see love and beauty. Sometimes I am in a deep state of depression or I am so angry that I have been horrifically mean, and he still sees just a moment of beauty. Sometimes he has been totally cold and emotionally disconnected. I look at him and I just can't stand him, and I think "But he is so beautiful."

I am sure my husband and I both learned this ability to see the beautiful in the midst of the mess from my parents. My husband has known my parents since he was sixteen years old. He too knew of the "Wind Beneath My Sheets" song my Mom and I had made up. He has seen my parents go through many struggles together and he has changed Mom's diaper with my Dad.

I am frequently told that my husband should leave me due to my illness, because "no one should have to put up with that" and that mental illness is a deal breaker in a marriage. People don't understand how beauty can be seen in our life together. My husband sometimes has to pick me up, get me showered, and dress me after we might have been fighting for hours the night before and I am too depressed to care for myself. Most people say that is just too ugly to have to live with. No different than the people who say the vow "in sickness and in health" no longer applies if your partner gets dementia.

I think one of the reasons it is so hard for couples to know how to see the beauty in the ugliness and how to leave ego behind and fight for a relationship, is that we never talk about messy relationships. People often tell me not to write about my illness because it is too messy. But if none of us talk about these things, we never learn that life can be terrifyingly messy and hard, but there are ways to keep going and have a good life. If we don't talk about it, no one knows the hours and hours of therapy and/or internal work it takes for two people to stay together and to still see beauty in terrible times.

I am not saying we put up with things like verbal or physical abuse, or any other number of issues in a partnership. I am also not saying that all relationships can stay together, because there are always extenuating circumstances that are exceptions. What I am saying is that you have to realize at some point your relationship will get messy, and when it does, can you still see a bit of beauty? Can you both call whoever you have to and do whatever work you need to to in order to do your best? Can you be the wind beneath each other's sheets?

Blessings,

Rev. Katie

What International Travel Taught Me About Shame, Ableism, and Invisible Disabilities

I debated a lot with myself whether or not my son and I should join my husband on his work trip to Brazil. He has travelled out of the country a lot, but my son and I never have. My husband has always wanted us to go with him out of the country and Brazil seemed a bit more accessible than some of the other places he has travelled to.

The issues are: My panic disorder is terrible on planes (not due to a fear of crashing or anything like that), I also panic in taxis and on public transportation. Jet lag and sleep disturbance are a huge concern because inadequate sleep and changes in schedule easily trigger bipolar cycling. My son and I have very bad food allergies/sensitivities and have a very limited diet.

The idea of panicking on a plane for 20 hours both ways, being unable to actually go anywhere once we got to Brazil due to the panic in taxis and public places, triggering mania with poor sleep, and being sick due to food we can't eat was just too much for me. I had pretty much decided not to go on the trip- until I asked other people for advice.

Most people told me to go, which I expected, but the reasons why I should go and the inherent ableism in those reasons was shocking to me. What I was asking people for was advice on how to navigate what I would need to go on such a trip. Such as, how likely was it that I could travel to Brazil with food allergies and not get sick? How could you safely take enough anti-anxiety medication to fly for 24 hours? How do other people with these issues travel? Instead, people had all other kinds of reasons they thought I should go, not addressing at all what I was asking.

I was told to go because I needed to expose my son to other cultures so that he knows what diversity is. I was told that it would be good for all of us to know what a minority feels like in a country where they do not speak the language and can't communicate with others. People said that it would be irresponsible and show a lack of interest or care for other cultures and types of people to not travel internationally since I have this chance- as a person of privilege. And of course there were all the misconceptions about what panic disorder really is and all the suggestions to just get drunk on the flight or that it just won't be that bad. Plus, no one really understood the food issue- because obviously we could tell people what we can't eat and just order dishes that don't have any ingredients we are sensitive to. Or because really the food sensitivities are "not real" and we are just middle class, gluten-free, fad following, picky eaters.

So, I stocked up on anti-anxiety meds, found allergy cards in Portuguese for the foods we are allergic to, and we all went to Brazil. I told myself this trip was a privilege and big deal. I followed the advice of others who said it was irresponsible for me, as a white, middle class person to not travel to another country when given the opportunity to be exposed to more diversity.

On the beach in Recife, Brazil. Photo copyright Katie Norris, 2014.

We are now near the last few days of our trip and, seriously, this was one of the dumbest things I have ever done. And I did it because I felt so ashamed of my mental and physical illnesses because I was told by other people that they were, in a way, not real enough. Or that they were not bad enough for me to shirk my responsibility to embrace diversity, be a good parent, and learn about other people.

So, how was all this "advice" I received from other people ableist? Ableism is a form of discrimination, where people who appear able-bodied are shown preference. "Like other “-isms,” ableism can be insidious, and so closely woven in society that people without obvious physical or mental disabilities might not even think about their ableist attitudes and the ableist structure of their society. For example, people with use of their legs may not consider how difficult navigation can be in a wheelchair."

To tell me that I am almost required to go on a trip and that to not go on the trip is a form of social irresponsibility on my part, is pretty ableist. Obviously these people are not taking into account how difficult navigation of life can be with these disabilities. As I had explained to people, the issues about the trip were not at all about not wanting to go to another country or trying to avoid other cultures and people, it was because I feared I was not able enough to handle such a trip. And I was right. Actually, neither my son nor I were able to handle the trip and as a mother I feel my irresponsibility here was great. I basically let peer pressure convince me I had to take him on a trip where he would get physically sick. That was irresponsible. We have been completely unable to find food that is safe for us to eat, no matter how many people here translated for us or what we had written down in Portuguese to show to wait staff, restaurants, and hotels, or the few food items we could find in a grocery store. Plus, I have not slept more than four hours a night for over a week, so the bipolar is not doing so well right now. As a parent, doing something that triggers my illness is also irresponsible.

People with mental illness are often bullied or shamed into doing things they are not ready for through tactics like this. Through misunderstanding of the illness by well-meaning people who do not see the inherent ableism in the assumptions they are making about us. We have to be our own advocates and we have to know there is no shame in the illness we have or our limitations because of it.

I have learned a few things from this experience:

1. Do not let other people assess your ability. Even if they have similar issues to you. Like some people with panic disorder said it would be fine and to go anyway, but their disorder does not manifest the same as mine does so neither of us should have assumed my ability level and theirs were the same. Oh, and don't let your spouse or partner assess your ability either when you know their understanding of it is not accurate.
2. Do not let other people shame you into doing things you are unable to do through their use of arguments about social responsibility, bad parenting, or whatever other argument that is not actually about the issue at hand. 
3. Stop asking other people for advice and trust your own instinct. It is not shameful to know what your limits are at any given time and to honor where you are. 
4. If you do not do number three, then listen to your friends who tell you to trust your instinct. There were a few, and I regret not listening to their wise advice.

Blessings,

Rev. Katie

Buzzfeed and Parents: A Child's Panic is NOT Funny

I always hate when I see these videos or photos that make fun of "overdramatic" kids who clearly are either panicking or over their threshold of being able to function because they just don't understand or can not handle what is going on around them.

I just saw this video of Buzzfeed called: Little Girl Deserves An Oscar For Her Performance While Getting a Flu Shot. In the video, a young girl, maybe eight to ten years old, is getting a flu shot. Unfortunately before the shot, her brother told her "It's worse than you think - way worse," and the girl then has a panic attack. The post comes complete with video and then captioned .gif's of the girl's terrified face with comments underneath such as: "Someone get this girl an agent."

I am a parent, I get the absurd humor that comes when you child is freaking out over something that is not a big deal, and we accidentally laugh. However, I have seriously tried to keep my accidental laughter or my judgement that my son's reaction is not valid to myself. It's real and valid to him, and I can either shame him and make fun of him, or, help him work through it so he knows how to deal with fear, frustration, anger, and overwhelm on his own in the future. This is an important life skill.

In the video, the little girl actually is actively trying to keep it together. She does not fight off the nurse, she is saying "Yeah, yeah, ok," indicating that she understands that she needs the shot. At one point she even says "I just can't help myself!" She follows the advice to press a button to distract herself (good idea from the nurse), but she is clearly still panicking. She is "laugh/crying," which some people think means the person is fine. It does not! Laugh/crying is a response to fear or stress. She is trying her hardest to get through a triggering situation yet everyone in the room is laughing at her. Then her parents and the world post it on the internet and joke that she is "dramatic," as if her visceral response is unwarranted and invalid. Tell the next adult who starts jumping around and screaming because of spider on the floor that their reaction is dramatic and not valid.

As the nurse is putting the bandaid on the girl's arm, you can see her shaking her head "yes," trying to get it together while at the same time her eyes roll back in her head and she looks like she might faint. If you know people who faint while getting blood drawn or for other reasons, you know that they don't just decide "Hey, I want to be dramatic, I shall faint, right now." Then, if you look at the screen shots of the video, the look on the girls face is sheer panic and terror, which I do not think is funny, at all. She's not acting.

I am hoping that this girl's parents also talked to her about the amazing amount of bravery she showed in getting this shot and trying to manage a terrifying situation. She cooperates, she tries to distract and sooth herself, and she even thanks the nurse at the end. She does all the right things that will help her foster the ability to handle panic in the future, as long as she is not shamed for it and is taught that she needs to hide it and that fear is not normal.

When we make fun of children for being scared or overwhelmed, we teach them that such reactions are to be hidden and not dealt with, which means they never learn coping mechanisms. This can contribute to developing a panic disorder in the future for many people. It also teaches kids to not have empathy for other people. Sure, some of us have inappropriate responses to accidents, like laughing, but people with empathy catch their response and then comfort and help the other person. If we continually laugh at and invalidate a child who is panicking, then they learn that when they have a friend or family member who is scared, that they should make fun of them as well, which does not help the situation diffuse and does not foster healing. It fosters an inability to emotional connect with others, which can lead to violence and oppression.

I am not saying that we all will have perfect responses to kids, or adults, when they panic or something bad happens. Part of human nature is often inappropriate responses due to trauma and surprise. What I am saying is that we should not promote making fun of other people's fear, it is very shaming and makes people feel bad about themselves and their emotions.

P.S. My husband pointed out the question: why was the mother filming this? What prompted her to start filming? Why would you randomly film your kids getting flu shots?

Blessings,

Rev. Katie

Stop Using the Phrase, "I Am Going to Kill Myself Now"

Like most people, I find those Autocorrect Fail posts hilarious. These posts show screen shots of people who's autocorrect turned a normal text into something highly embarrassing. However, I have noticed an interesting thing in many of these posts. When the texter notices the autocorrect fail, sometimes their next text is something like:

"I am going to jump off a bridge now."

Copyright Bipolar Spirit 2014.

"I am going to kill myself now."

Or check out this one where someone is "literally" going to kill themselves from getting a weird text from her mother, and then her mother tells her not to be "crazy."

I know that these are just people responding to extreme embarrassment and overall this is not a big deal. However, this does tell us something about the way we look at causes of death by suicide.

People who die by suicide do not die because they are embarrassed like what happens with an autocorrected text. It makes no sense that we even joke about killing ourselves when we are embarrassed.

Death by suicide is due to the deepest despair. It is the result of a brain that is broken and has convinced a person of any number of false realities such as: a loss of meaning and purpose in life, the belief that one is a terrible person, unworthy of love, and even your loved ones would be better off without you. Or the belief that you are inherently evil, worthless, or deserve to die. Even that is not a good enough description of it. There is no way to adequately describe such despair, or to know what exact ways in which any one person's brain has created a faulty reality for them. Mental illness manifests differently for every person.

We need to stop using phrases like "I am going to kill myself" so lightly. It's not a joke. It's not an appropriate way to express general embarrassment or incredulity at something. It's a misunderstanding and trivialization of a dangerous illness that is no joking matter.

Blessings,

Rev. Katie

New York Daily News Crosses the Line with Robin Williams Cover

I know the New York Daily News is just a tabloid, so we can't expect much from it. However, even a tabloid paper should have a better sense of human decency and respect than to do this to anyone:

From NY Daily News Facebook Page.

For the love of all things holy, what is wrong with the people that work at this place?

If we ever wonder if stigma against people with mental illness is still alive, and if people are made fun of and shamed for death by suicide, this proves that both of those things are still true. 

I guess I should be less naive than to think that because people are inherently good (darn my Universalist theology), that they would not throw all of their morals and compassion out the door for money. Because, really, all this cover does is use sensationalism to sell more papers. 

I would love for the editor, owner, or someone in charge at the New York Daily News to explain how they ever thought this was an acceptable cover. It crosses the line from sensationalist journalism to irresponsible, heartless, and offensive. 

I not only hold the newspaper accountable for creating such a horrific cover, but also all the people who bought it. If a large group of our population was not just as heartless, then there would be no reason for the New York Daily News to create something like this.

I don't even know where to start with why this is so offensive. Viscerally most people would look at this and just know on a million different levels that this is wrong, but here are a few points to mention:

• He was not "hanged." If someone dies from a complication of their illness, you do not phrase it in this way. A person who died from cancer would not have been "tumored."
• The general public does not need to know details of how he died. Reports on death due to other illnesses rarely ever include descriptors of exactly what happened. This further stigmatizes mental illness. 
• The graphic description of his death is triggering for people who have been, or who are currently suicidal. 
• Why deliberately put his family and friends through even more anguish by printing something like this?
• What does where his wife slept have to do with this story? Clearly the paper was just trying to hurt her as well.
• The format looks like a wanted poster, further stigmatizing mental illness. 
• Creates a sense of shame around mental illness and death by suicide. 

It's just sad that we live in a culture where dozens of people (at least) saw this cover, approved it before it went to print, and they all thought, "Yes, that looks great. Not heartless at all. I can endorse this and still sleep well tonight." And then hundreds more people bought the darn thing! 

(For a better version of this cover, see this modified Daily News cover by Alan Scherstuhl.) 

Blessings,

Rev. Katie