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

On Cooking Chicken and Accepting Limitations

We have no food cooked in the house and I was feeling great after a productive morning, so at the grocery store today, I bought a chicken. A whole chicken.

Because I was feeling great, and I had all of this time today, and we have no food. I was going to easily make a chicken and even cook stuff to go with it! Like those butternut squash that have been sitting around forever on the kitchen counter and I hope have not sprouted inside.

My son and I got home from the grocery store, I cooked up the sausage I had bought us, and we ate lunch together. He went to his room to play on the computer, and I sat in front of my computer. Now its 3pm, and I still have that chicken and those butternut squash.

All of this seemed so accessible earlier in the day. I thought I had all this time, and cooking a chicken and squash is easy for most people. I was so excited because we were going to have food! I was going to have dinner ready when my husband got home. We were going to have leftovers so we actually had breakfast tomorrow, whereas today all my son got to eat for breakfast was beef jerky and dried cherries.

It is 3pm, and I have at least 3 hours to cook this chicken and I just don't know if it will happen. This is what it is like when you have limited hours with which to function each day. You have no idea what each day will bring, how much time you will have, and if today is the day you can figure out how to cook a chicken, or not.

I am getting better at not feeling bad about these days because, what good would that do? I don't really care that other people find it easy to cook a chicken and squash for dinner. I don't really care that we may all be eating jerky and dried fruit for dinner tonight. I am exhausted and overwhelmed, and just not functioning. If I push myself over what I can handle, I risk triggering bipolar cycling which will end up with me either a crying mess or a screaming lady by the time dinner roles around. So, even if I push myself and cook the chicken, I doubt my husband or son would enjoy who they were eating the chicken with.

The chicken is taunting me from the fridge. In a while I may have rested enough to actually get that chicken into the oven. If not, that is ok.

It is hard to accept your limits, especially in our world of competition and shaming. Where parents shame other parents for how many fun places they took their kids, or did not take their kids, in the summer. Where those who have an easy time cooking chickens, taking care of dogs and kids, and working, look down on those of us who are lucky if we got out of our pajamas.

Everyone has different limits. I choose to be grateful for the things I can do, instead of hate myself for what I can't.

Here is what I did do today:

• I got up at a normal time today! (Shocking)
• I got to CrossFit and did a workout that was awesome.
• I bought groceries so at least we have food should any of us figure out how to cook it. 
• I got through the grocery store without a panic attack! 
• The dogs have been taken outside, so I have not had to clean up anything off the floor. (Win!)
• I took a shower, brushed my teeth, and got dressed.
• I had a therapy appointment.
• I watched a TV show with my son.
• My son laughed at me while I sang a song about Baba Ganoush, which he won't eat. 
• I am neither depressed or manic. (Also a win.)
• I wrote this blog post, after zoning out on the interwebs for a while. 

That's a pretty good day, even if the chicken never gets cooked.

UPDATE: The chicken is in the oven, plus one butternut squash because I did not have the energy to peel and cut two of them. But, OMG!! You have to clean up after the chicken and squash get into the oven. And then clean up after you eat it all. See, that is why one "simple" task is not so simple.
...And, it is now 8:30pm and I just realized that the only reason I was able to cook the chicken is because I had a parenting fail and completely forgot that my son had CrossFit Kids tonight. See, again, this is why it's a bad idea to overextend yourself. You end up getting everything out of whack.

What are the great things you did today that you should be proud of?

Blessings,

Rev. Katie

Mental Health Discussions: What Can a Minister Do?

Recently, the amazing Glennon Doyle Melton of Momastery posted this to her Facebook page:

"Dear All The People,

Please, if possible- this:

Before doling out advice about medication for the mentally ill, pause to ask yourself these quick questions: 1. Am I a doctor? 2. Am I the doctor of THIS person I'm talking to?

If the answers are yes- by all means - carry on! If not, shhhh.

Also just a gentle and loving reminder to the pastors and religious leaders. Pastors (along with druggies and drunks and depressives) are MY PEEPS. LOVE YOU. But listen - if you are a pastor, you don't actually count as a doctor. Pastor and doctor are, like, two totally different careers. Different colleges and such. So- maybe no medical advice, please. Out of gratitude- I promise not ask my doc for communion.

Jesus loves Me This I Know, For He Gave Me Lexapro.

Love,
G"

As always, she gets right to the point and has great humor. I think she is fantastic and her book is a good dose of inspiration, humor, and is a great read for a spiritual practice. I even wrote a blog post for her Messy, Beautiful Warrior Project. 

I totally agree with her. Ministers should not give out unsolicited medical advice about medication. From reading the comments, it seems like what most people with mental illness get from ministers, is the belief that mental illness is not a true illness and you can just pray it away. I don't agree with that. As a Unitarian Universalist minister, belief in evil spirits as a cause of illness, medical cures through only a belief in Jesus, and prayer as a sole medical intervention, are just not things that are part of my theology. We understand the body, mind, and spirit connection, and we value the combination of science and religion. 

On the opposite side of what it seems like Glennon and some of her readers with mental illness have experienced, I more often get ministers telling me I have to take medication. I have been told it is morally wrong not to take medication. I have also been told that if I don't take medication I must not really have a chemical imbalance, not a "real mental illness." As if treating it only with medication is the thing that proves you have mental illness. (You might want to tell my many psychiatrists who diagnosed me that information, because they might need to know they, apparently, should to go back to medical school.) 

While I agree with Glennon, I want to be clear that I do not think ministers are unable to give counsel about mental illness. I don't think that was what she was saying in her post at all anyway, but many of her readers took it that way. Medical advice would be what medicines to take, shock therapy or not, and such treatment that a psychiatrist would give. However, people contact me all the time about mental illness and treatment because I talk about my mental illness publicly. I always say that each individual needs their own treatment team. That could be just a therapist and Psychiatrist, or include also a minister, spiritual advisor, nutritionist, etc... 

I do believe mental illness, like all illnesses, has physical and spiritual components to it. Please read this blog post for more explanation of what I mean.

Rev. Katie Norris. Copyright.

I don't want ministers to get the idea that we can not tell our own stories if we have mental illness. I also don't want people to think that ministers have no place in a mental health treatment plan, because they can. We just need to know boundaries. 

As a minister, I can give counsel about ideas for spiritual practice that can support treatment. I can be a pastoral ear and listen to the pain that most people in the world are unwilling to listen to. I can help families communicate better. I can advocate for a better understanding of mental illness, and help churches create a stigma-free environment. I can be the minister to officiate a funeral and walk a family through a death by suicide. I also can be a part of a person's mental health team. Many doctors and therapists suggest spiritual practices, like meditation, as part of a treatment plan. Which means that it also should not be assumed that doctors know nothing about spirituality and can not advise to bring that into a treatment plan.    

I can also tell my own story, which is not giving medical advice, but does let other people know more about different treatment options. Just like Glennon writes about her medication, I can write about my spiritual practice, sleep schedule, diet, and exercise which all help treat my mental illness. There is sadly not enough information about the varieties of types of treatment and the many, many things a good treatment plan needs. That is why we need more people with mental illness sharing their story about what manages their illness. When I read that someone else uses a mood tracking app to help manage their bipolar disorder, I might want to ask my doctors if I should add this into my treatment plan. 

Everyone needs their own mental health team, of their choosing. Unless you are on that team and have been asked for advice, don't give it. If you are someone with mental illness, don't change your treatment plan on your own based on what someone outside of your team tells you or what you read on the internet. Make decisions with your mental health team. 

Blessings,

Rev. Katie

UPDATE: Here is Glennon's Facebook response the day after the post above. See how great she is?:

"Yesterday, there were folks upset with me for telling depressives to “take their goddamn meds.” I was pissed that they were pissed. But I slept on it. And when I woke up, I had a softer heart about all of that. My friend Nadia Bolz-Weber calls this a heart transplant: when your heart of stone gets ripped out and replaced with a softer, open one. I think if we are not having heart transplants daily, we are really missing out. So anyway- I understand. It’s all confusing and murky. I know that we all want the best for each other. I believe that even more strongly in the wake of all the passion this week.

I’ve got some mental illness issues and chronic Lyme disease, and so my relationship with meds/no meds is windy and twisty and hurty. I haven’t been on any meds for a year now. I’m grateful for that. I’m also grateful that I had the meds when I needed them- they felt like a lifeboat for me. I’m insanely grateful to know that they are available if and when I’m in desperate need for a lifeboat again. And I just want other drowning people to feel less shame for climbing in whatever life boat is available. The fact is that I don’t write about all of this because I love meds. I write about all of this because I love people. And I love the lifeboats that save them. But I don’t have any freaking clue what you should do. I just want you to be okay. I just don’t want any of us to drown.

It’s been a tough freaking week. Just a TOUGH one all around. I feel rubbed raw. Do you? When I turned on the news before bed and saw the Ferguson crisis I just thought: the whole world needs a lifeboat. I guess we do, and I guess that lifeboat is love and forgiveness and grace- in all of its million forms. I don’t want to put anything out into the world today except for love and forgiveness and grace. I really love this ragamuffin crew. You are my lifeboat, too. Thanks for floating and bumping along with me.

Love, G"

Mental Illness as a Spiritual Issue: A Reflection on Matt Walsh's post about Robin Williams

I read Matt Walsh's blog post "Robin Williams didn't die from a disease, he died from his own choice," and I wanted to hate it. Ok, well, I hated most of it. I vehemently disagree with most of what he wrote, and find parts of it far too shaming of people who die by suicide. In fact, I don't particularly like most of what he writes on his blog in general. We just don't line up politically, and that is fine.

I don't think arguing with him is the best course of action, but I do want my own readers to know where I stand on the basics of some of what Walsh said.

I disagree with Walsh where he says:
"First, suicide does not claim anyone against their will. No matter how depressed you are, you never have to make that choice. That choice. Whether you call depression a disease or not, please don’t make the mistake of saying that someone who commits suicide “died from depression.” No, he died from his choice. He died by his own hand. Depression will not appear on the autopsy report, because it can’t kill you on its own. It needs you to pull the trigger, take the pills, or hang the rope. To act like death by suicide is exactly analogous to death by malaria or heart failure is to steal hope from the suicidal person. We think we are comforting him, but in fact we are convincing him that he is powerless. We are giving him a way out, an excuse. Sometimes that’s all he needs — the last straw."

I think this is too simplistic a look at the disease of mental illness. I do believe mental illness is very much like cancer, and that the disease has the ability to take over our mind enough that we do not have a choice. Just like cancer can progress so far that no amount of radiation or treatment will save a person, the mind can be so compromised that people can no longer save themselves. I have seen people get at that threshold. The mind can break, just like any part of the body can.

Our mind is what controls everything. Our mind controls our ability to choose, and if the mind is ill enough, then it makes sense that such a choice may at some point become unavailable to us. From Williams' recent stay in rehab, we can tell that he was reaching out. He was trying to intervene with his illness early enough and trying not to get to that threshold where suicide would claim him against his will. We don't understand mental illness enough to know if a person is safe being left alone for five minutes, or not. We don't have a test to show how broken the brain is at any point, and if a person is at risk of death by suicide. Death by suicide is not an "excuse." Talking with compassion, rather than shame as Walsh's post does, about people who have died by suicide does not increase the incidence of it. Having a compassionate stance on death by suicide, just like we have with death from other illnesses, gets us talking about it. This allows people to know that it is safe to reach out before their mind has completely shut down so that they have more of a chance of recovery.

I could go into more details of the other parts of Walsh's post I disagree with, but I think this gives a basic overview: I fundamentally do see mental illness in the same way as other illnesses, and I take a hard, shame-free stance, when talking about death by suicide. (Here is a great post on how mental illness is not selfish.)

Rock balancing, spiritual practice taught to me by my therapist. Photo Copyright Katie Norris.

The one point Walsh brings up that I do think is worth taking a deeper look at is this:
"I can understand atheists who insist that depression must only be a disease of the brain, as they believe that our entire being is contained by, and comprised of, our physical bodies. But I don’t understand how theists, who acknowledge the existence of the soul, think they can draw some clear line of distinction between the body and the soul, and declare unequivocally that depression is rooted in one but not the other. This is a radically materialist view now shared by millions of spiritualist people."

First of all, I know a lot of atheists, and I have ministerial colleagues who are atheists, so I won't even argue how Walsh's definition of atheism that supposes atheists have nothing to do with spirituality is inaccurate. Theist or not, I do think there is a point here that mental illness is also a spiritual issue. I define the spiritual or divine as that which you feel is greater than yourself. For some people the spirit is a personal soul, for others it is God, for others it is the energy of the Universe that created us and holds us all together, and yet for others it is the connection between humans or even our own connection to our deep inner selves. All things are connected, and I would say that all disease is spiritual as well as physical. Most of the world's religions understand there is a connection between mind, body, and spirit. We need to treat all illnesses from a spiritual perspective, as well as a physical one, and that is why I think Walsh does bring up a good point about mental illness being a spiritual issue.

I love the line from the musical, Next to Normal, (about a woman, Diana, with bipolar disorder) where Diana sings "What if the cut, the burn, the break, was never in my brain, or in my blood, but in my soul?" This was referring to the fact that, while she had a lot of medical intervention, part of her illness was triggered by the death of her son, This was a spiritual loss, which her husband refused to address, and which was not a main part of her treatment.

www.owningpink.com

I do think that one of the things missing in mental health treatment is the spiritual aspect, and that is one reason why we have such low success rates for treatment.

I would encourage people to read Lissa Rankin, MD's book "Mind Over Medicine" for a great resource on the current research on how the mind, body, and spirit are connected. It is the perfect mix of how a medical and spiritual model can meld together. I love her "Whole Health Cairn," which depicts stones balancing on top of each other that show what you need for whole health. The stones are housed within a bubble of service, love, pleasure, and gratitude. Many of the "stones" we need to balance for whole health are spiritual, such as the biggest base stone being our "inner pilot light." Rankin says: "Your Inner Pilot Light is that ever-radiant, always-sparkly, 100% authentic, totally effervescent spark that lies at the core of you. Call it your essential self, your divine spark, your Christ consciousness, your Buddha nature, your higher self, your soul, your wise self, your intuition, or your inner healer. The minute sperm met egg, this part of you ignited, and it’s been glowing away ever since."

So yes, I see mental illness as a physical and spiritual issue, and in order to have a good treatment plan, one must work on the spiritual side as well. For each of us that is different. For some it will be a deep belief and connection to God or Jesus, for others of us it will be a focus on spending time in nature. I strongly believe though that all of us need to have a connection with our own inner pilot light in order to heal. You will notice this being important even in Walsh's post, where he says, in struggling with his own depression,: "When we are depressed, we have trouble seeing joy, or feeling it, or feeling worthy of it. I know that in my worst times, at my lowest points, it’s not that I don’t see the joy in creation, it’s just that I think myself too awful and sinful a man to share in it."

If we do not have a connection to our soul, our inner pilot light, our deepest selves, then yes we see ourselves as awful, sinful, or bad. I would say, we feel shameful, as Brene Brown, PhD defines shame as the belief of: "I am bad." In all the people I work with who have mental illness, this is the sticking point, the core belief, that few people seem to understand, and medications have a very hard time treating. I believe this is the extra work, the spiritual work, that we need to do in order to decrease the rates of death by suicide. I also believe this is why we can not talk about death by suicide as a "choice," "excuse," or "selfish." Such shaming talk reinforces the core belief that we are bad, which worsens mental illness. Plus, shame is the opposite of empathy, and as Dr. Brene Brown says, shame cannot survive empathy." So what we really need is an empathetic response to suicide, suicidality, and mental illness if we are ever to help people heal. That is the spiritual work we need to do as a community.

Blessings,

Rev. Katie

P.S. If you or someone you know is suicidal, please reach out. Call the National Suicide Prevention Lifeline at 1-800-273-TALK. I have called, I know many like me who have called, and they help. 

"Why Is This Happening To Me?": Helping Kids Navigate Chronic Illness

Today my beautiful, smart, strong, and loving ten year old son asked me, with tears in his eyes, "Why can't I be normal? Why is this happening to me?"

Ever since he was a baby, my son has dealt with pretty severe stomach issues. When he was nursing, all I could eat for months at one point was baked chicken, rice, and broccoli. Then when he started on solid food, he was still always sick. At one point he was diagnosed with a fructose allergy, and we were told he could not eat fruit or anything with fructose in it. That seemed to get a bit better somehow, and we went for a time when his symptoms were mild, but then he ended up with a rectal prolapse which was super scary, but after some treatment, it resolved. He still went on and on with general stomach issues until we started eating a Paleo diet for my own health, and a lot of his issues improved, but not all. We were always more lenient with him because it was unclear what was wrong with his stomach and all allergy testing and other tests came back fine so doctors told us changing his diet could not make a difference.

However, changing his diet made a big difference, not only in improving many of his stomach issues but also other things, such as sensory processing disorder. That is another story for another post though.

Even with so many diet changes and improving, he still has episodes of stomach distress because we are still working on figuring out exactly what is triggering his symptoms. Actually, he was really doing well with barely any symptoms even on a 90% Paleo diet until three or four months ago when he got what we think was a stomach virus that just completely messed up the balance in his gut. He was vomiting on and off for four weeks. Now, if we stay strict Paleo plus removing some extra things, he does pretty well. But, there are still flare ups. It seems like we can not deviate from a very strict list of foods at all, which is hard. We travel often and we try to make sure when we eat out that the food is safe, but he still gets sick anyway.

Today, all he wanted to do was go to his CrossFit class, which he loves. But he was doubled over in pain. That's when he asked me, "Why can't I just be normal? Why is this happening to me?" All I could do was say, "I know how you feel."

I do know how he feels. I have had Irritable Bowl Syndrome my whole life and lactose intolerance (which got a bit better after my pregnancy actually,) and colitis more recently due to a bad setback with my binge eating disorder. Like him, all of the tests from doctors have been completely unhelpful and everything comes back negative for any allergies. I have lived in that place of not knowing why something is happening to me. I also have all of the mental illnesses on top of that, so I know what it's like to just want to be normal. Normal enough just to be able to function half way decently in the world, and not miss out on everything you love. Something "next to normal," as the musical says.

My son asked me "What if everything makes me sick? What if I can't eat anything except what you make, and I can't do that forever. What if I never get better? What if there are only three things I am not allergic to. What do we do then?" I told him we would do whatever we have to do. We will keep working hard with health professionals to find out what is wrong with his stomach, and if he has the most limiting diet ever, then we will do it.

My son, helping make almond milk since he can't have dairy.

I could have given him the pep-talk about how no one is normal and normal is just a setting on a washing machine. I do not think that would have helped though. Really what he was asking me was, "Why can't I just not be sick all the time?" and "What does this mean for the rest of my life?" At ten years old he is questioning if he will have to always be sick, and always put his life on hold for his illness.

So I was honest and told him I have no idea why bad stuff happens, but I do know that the most powerful thing we have is each other. We can be "not normal" together. I also let him know that if if there is anything I have learned from being wildly outside the norm and missing out on a ton of life due to my illnesses, it's this:

It sucks, it's hard, and it takes a ton of work. But... you learn to be a fighter even when you don't want to be and you think you can't go on, you learn to have compassion for others and their struggle in life, you become a more empathetic and loving person, you want to help other people suffer less, and you find hope even when you are convinced there isn't any. 

Blessings,

Rev. Katie

Body Shame Triggers Mental Illness, Body Love Heals

I have a great TEDx talk to share with you all today: "Change Your World, Not Your Body," given by Jes Baker at TEXx Tucson. It is a fantastic talk about how embracing body love is not just good for us personally, but it can have a global positive social impact. One thing I love about the talk is that Jes addresses something that few people talk about in relation to body love- how our culture of body hatred contributes to mental illness.

Mental illness is a two part illness having both chemical and environmental factors that can cause, trigger, and/or exacerbate it. All of the body hatred we learn in our society contributes to the increasing rates of mental illness, and not just of eating disorders. Depression is hugely effected by the relationship we have with our bodies. If you are prone to depression, you do not need the body hatred messages that say you are not good enough, no one loves you because of what you look like, and you do not deserve to have relationships with other people. That increases the depression, loneliness, and isolation.

My cocktail of mental illnesses are highly tied in to my view of my body. In the beginning, I thought that I was depressed and unable to do anything because I was disgusting and lazy, because I was taught by our society that overweight people are lazy and unsuccessful. That contributed to me spending more time trying to loose weight, and less time actually finding the right professional help for my mental illness. My treatment was put on hold due to my body hatred. Jes talks about this in her TED talk, that "We put our life on hold, we stunt it, because of our bodies." This is a huge problem for everyone, but a serious problem for people with mental illness who forgo focusing on mental health treatment because we are taught that the real problem is just that we are fat or ugly. If we just lost the weight or got rid of our acne, we would be happy and successful. In fact, our whole beauty industry revolves around this message, that a happy and balanced life can be obtained by being beautiful.

My husband can tell you that when I have a "bad body" day, a day when I hate my body, my rapid cycling bipolar disorder cycles even faster. Body shame, which teaches us "I am bad, because of my body," is a very dysfunctional message to send to your mind. If we walk around in a state of shame, of believing we are bad, then we are reinforcing negative pathways in our brain. If we keep those pathways going, neuroplasticity says that we will make shameful beliefs about ourselves a pattern, and a reality for us.

If we believe we are bad, our mental health is harmed in many ways.

If we are bad, there is no hope for recovery. If we are bad, there is no hope for a better life. If we are bad, we have no choice and no agency in our lives. If we are bad, neuroplasticity is a lie, treatment is a lie, and we will be sick forever. If we are bad, we deserve to be punished, which leads to body harm for many of us, as it did for me.

Jes Baker and me at her Readers Dinner in San Francisco.

Body shame and hatred also significantly contribute to, or can cause anxiety. If we believe that our bodies are disgusting, need to be hidden, and we do not deserve to be in the world, we will become anxious. Some people become obsessive over choosing what to wear to leave the house in order to be sure that they encounter the least amount of name calling or shaming from others as possible. Many people live in a state of fear of physical violence when they are out in public, because of what they look like. People have been abused to do being thin, fat, for the color of their skin, their acne, rosacea, hair, clothes, and more.

I have a panic disorder that actually was triggered due to body shaming. I have Irritable Bowel Syndrome (IBS) and Lactose Intolerance. When I was just a child, six years old, people used to make fun of me for not being able to go out because I was sick. They mocked my lactose intolerance and said I was making it up. People were relentless in saying that what my body was doing was not real and that I was only trying to get attention. That is body shame of another kind- shaming someone for how their body works. Some professionals have told me that the way to "get over" my anxiety was to learn that no one will make fun of me and most people are genuinely nice. That is not really a world that we live in, when we have a culture that constantly makes fun of bodies that do not work "correctly." I have talked to many people with Celiac Disease who are constantly made fun of. I don't trust that people will be kind if I get sick in public, so I live every day, every moment when I am with others and often even when I am alone, deathly afraid of getting sick.

Embracing body love is essential to good mental health. Body love does not mean only accepting your weight, but everything about your body- how it ages, what it looks like, and how it works. Embracing body love and using that philosophy with the treatments my therapist provides, like Emotional Freedom Technique (EFT), has been very important in the treatment of my mental illnesses and my ability to get well. Plus, I had to accept that my body works differently than most peoples in order to accept my mental illness. I also had to accept my body in my treatment plan, because I was very upset that medications kept making me sick and I could not take them. I was very upset that I had to change the way I ate, slept, and functioned every day because my body (which includes my mind), is "different." If I don't love my whole body the way it is, then I don't follow through on treatment and I get worse.

This is definitely something we need to be talking about more and we need to start changing our world.

Blessings,

Rev. Katie

There Are No "Demons Inside"

Joan Raymond wrote an article for NBC News about how teens with mental illness often hide their illness. The article raises the issues of why teens hide their illness, such as how during the teen years, anyone who is "different" is often bullied. It discusses how mental illness is seen in society as scary or weird, and so teens feel unsafe talking about how they are doing. The article also talks about how hard it is to actually even get mental health care for teens. Overall, it's a decent article that raises important issues. (I disagree with putting in the parts about the school shootings, and a quote from a teen accused of plotting violence who self-diagnoses and says "I think I am just really mentally-ill." The research does not support violence being linked to mental illness, and I have written about that previously.) It's an article that is meant to raise awareness so that we can do something, help teens feel safe to speak about their illness and get them proper treatment.

However, the title negates the whole message:

"Demons Inside: Teens at Risk Can Hide Mental Illness"

What teen or parent of a teen with mental illness would ever read this article and feel safe talking about mental illness when the title equates mental illness with "demons inside?" The title is emblazoned across a photo of Kenny Baker and his parents. Kenny died by suicide at 19 years old due to depression and anxiety. I feel for his parents. How it must hurt to see a beautiful photo of them with their child, and have the words "Demons Inside" splashed across it.

Mental illness has nothing to do with demons or inherent evil. Using a title like this promotes stigma and fear- the very things the article was attempting to combat. This "demon" idea is an old, outdated belief that stems from fear, in a time when we had no medical and scientific understanding of the brain. We no longer live in the middle ages. And yet, many people still believe people with mental illness are inherently evil, have let the devil into their soul, or are possessed by demons. Consistently since I started this blog a few years ago, the number one search term that brings people to my blog is "bipolar caused by evil spirits." If you read the comments on the NBC article, you will see quite a few people who think that mental illness is caused by the devil. We can not be promoting those ideas.

I have had mental illness since I was six years old. I remember news stories about murders or violent crime and hearing the terms mental illness, demons, evil, and possession being used all the time as reasons for the violence. I knew something was wrong with my brain, and there was no way I was going to tell anyone. What kid wants to be told they are inherently evil? What child or teen would ever feel safe in that environment?

Equating mental illness with demons and inherent evil that you have no control over also gives children and teens the message that no matter what they do, they will always be evil. They will never get better. They have no future, no chance in life.

There are no words to describe the immense self-fear and loathing this message creates. To be taught that even if you try to be good and kind, you never can be. To be told that at some point, because you are evil or possessed, you will hurt other people. This means there is no hope for you. You have no worth, no dignity, and no soul. And if there is no hope for you, then seeking out treatment is not an option. It's a terrible life sentence, and I am extremely disappointed to see this message in 2014 promoted by NBC News because they chose to sensationalize the title to get more readers.

I emailed Joan Raymond about my concerns with the title, but have not heard anything back yet. Who knows if she or her editors chose the title. Whoever it was, they were being very irresponsible.

Blessings,

Rev. Katie

My Days Are Shorter Than Yours

We are driving across the country for our move, and events like this are some of the times when I hate the limitations of my illness. I have a limited amount of time each day when I can be engaged and functional. Most people can drive for 6-8 hours and then have a night out of sightseeing and dinner. I however reach my breaking point much earlier than that, and just can't keep up a whole day of interaction.

I wish that I could spend all day with everyone and go out and do more interesting things. I want to force myself to do more, but at the same time I know if I overextend myself, I will eventually be unable to function at all.

I don't think most people understand living with a chronic illness, particularly one they can not see. Healthy people, understandably, don't know what it is like or what it means to have limited time and energy throughout the day. Basically, those of us with certain illnesses have a shortened day. While other people have 24 hours, we might have 8, 10, or even less. Can you imagine trying to fit in all you usually do in less than half the time?

What is even worse is that since other people don't understand such limitations, you come off as being selfish, not willing to do what other people want. But for me, going out to dinner or functioning past my limit is like expecting someone with a broken leg to run a 5K. It's not a choice to be unable to do something.

The Norris Family, somewhere at a rest stop in Nebraska.

I try every day to live my life in balance, to not do anything that will take away from my ability to function, but it's a circular issue. If I push myself one day and over do it, then I do not have the ability to do the things I need to stay more balanced and have more functional time during the day. For instance, one evening of going out will mean coming home overly exhausted, anxious, and possibly manic. In order to calm myself down from a state I can no longer control, I might eat a whole bunch of sugar to increase the serotonin in my brain. This leads to either not sleeping at all or not sleeping well, which means the next day I have even less energy and then I have to choose: "Do I use what little energy I have to go exercise, which is essential for balancing my mood?" or "Do I use what little energy I have to get my son fed and ready for school?" At that point it creates an ongoing deficit from which I can't recover unless I take a lot of time off to recuperate, at which point I don't even have the energy for the basic essentials in life. Seriously, tasks that are easy and quick for most people, such as getting out of bed and brushing their teeth, is extremely hard for me at times. Those tasks might take someone else a bit of energy and ten minutes of their day. For me it can take as much energy as running a few miles and an hour of my day.

So for me, decisions to go out and do more and have more fun are not actually decisions about myself only. I have to decide how much I can do so that I keep my illness managed well, which is what allows me to take care of other people. It allows me to get my son to school, feed the dogs, get my work done, be kind, be stable, and contribute to the world around me.

It is hard to be the one who is, essentially, the "party-pooper." I don't think the people I am with are required to change plans because of me, but I know many people feel forced to do so because they feel bad leaving me alone or they want everyone to stay together. However, I like to try and make sure my illness limits other people as little as possible. I usually always like to drive my own car so that if I can not stay out as long as everyone else, then I can go home. I get my own hotel room at retreats and on vacations because I don't want other people to have to limit what they do because of my needs.

Of course, the two people I am always with, my husband and son, are often the ones who are effected the most by my limited ability. Often things we really want to do together as a family, I don't do because even on the best planned days, something can go wrong and I end up having far less functional time than we anticipated. It's hard for them, but I always try and be honest that this is my illness and has nothing to do with them. I also show them how I am always learning how to manage my illness better, so that over time I have more functional time or I learn to estimate better so I can follow through on our plans more often.

I hate being unable to do what most other people can do. I hate it not because of how it makes me feel, but more because of how it makes other people feel. Which I know I am not responsible for, but it still bothers me.

It is very hard to have an illness that few people truly understand, which most people see as unreasonable, fake, or selfish because then you feel ashamed of taking care of  yourself. You feel bad for not being able to go out to dinner or going to an event because other people see it as selfish rather than understanding that it is just not healthy or safe for you to do.

I am fortunate to be traveling with family who understands that I can't function after a certain point. I wish the rest of the world was like that though because I know those of us with such illnesses would have a much easier time remaining stable and able to function to the best of our ability, if we were not shamed into doing more than we can handle.

I encourage other people like me to not take on the shame someone else tries to put onto you, no matter who they are. Stick to the choices that make you healthy and able to do as much as possible, for you. And, find friends and family who don't shame you and spend more time with them.

Blessings,

Rev. Katie

P.S. A great post was written on this topic called "The Spoon Theory," which I think everyone should read.

Corseting: Respecting How My Body Works

This post was originally written for The Body is Not an Apology, where I am a Content Writer.

I have had a binge eating disorder since I was in grade school. Sitting down to eat a family-sized bag of Skittles on my own in one sitting was not unusual for me. Now I know that binging on food, especially sugary food, was the only way I knew at that age to medicate my mental illnesses of panic and bipolar disorder. Sugar does a lot to the brain, especially increasing serotonin, just as antidepressants do - except that sugar is unregulated, and you need more and more of it to get the same effect.

Due to binge eating, I gained weight and started dieting - mostly starvation diets and low-fat diets that made me feel horrible and actually did make me crazy. My anxiety and bipolar disorder went through the roof every time I dieted, but I didn’t care, because at least I was skinny and people treated me better. This is what everyone told me to do, even doctors.

With all of the dieting, I lost all sense of hunger cues, I ate processed foods with no nutrition because they were low in “points,” and I rarely ate fruits (too high in calories) or vegetables because you couldn’t eat them with anything that tasted any good. Sandwich Thins and fat free bologna comprised every meal, while I binged on Skinny Cow ice cream bars in between. As long as I lost weight, the doctors were happy - and the weight loss company I was paying was really happy. I would go for half a day without eating to save up my calories for a meal I wanted if I was going out with friends.

Then, two years later, I could not handle the dieting and I would gain the weight all back. I swung to the other side, still eating processed foods, but not the low-fat ones anymore. Whether I was dieting or not, I had constant stomach issues; rarely did food stay in my body for very long. I was allergic to some of what I was eating and had terrible skin problems as well. Basically, I learned to destroy my body - to never listen to it and what it needed. I was told my stomach issues were all Irritable Bowel Syndrome and it was normal for me to be sick all the time. No doctor ever recommended to me that I should listen to what my body was telling me.

This cycle of binging and dieting slowly started to change when I started wearing a corset daily. First of all, as I mentioned in my previous post, due to wearing a corset, I don’t hate my body anymore, so I rarely feel like I have to diet or look different. Second, wearing a corset requires you to know your body. You have to respect your body.

Rev. Katie with her son. Corset by Dark Garden. 

When you get a new corset, the steel bones are stiff. It needs time to be seasoned and to mold to your body. You have to learn to listen to your body and to never wear a corset too tight, too long, or if it is applying pressure anywhere that makes you hurt.

I also find that I can’t starve myself in a corset. Whenever I under-eat (such as with dieting), I get light headed, tired, angry, and tend to have faster bipolar swings. In a corset, I become aware of when I am hungry faster, and I have to eat small meals throughout the day, which for me is better for my brain. (Some people do great on intermittent fasting and other patterns of eating.) I think since the corset helps you learn to honor your body and listen to it, corset wearers learn what pattern of eating is best for their bodies and helps them function well.

Previously, I had been able to put up with the extreme stomach pain and other daily issues from eating things that did not work well with my body. Now in a corset, when I eat something that bothers my stomach, I notice right away; the extreme cramps caused by allergenic foods are apparent while corseted. Many people while corseted cannot drink carbonated drinks or foods that ferment in the stomach, such as pasta. When corseted, I don’t eat things my body does not like because I know it will be uncomfortable, and because becoming more aware of my body has made me respect it more. Before I could just get away with ignoring my body and abusing it. The corset makes me very aware of everything my body feels and, for me, this change has resulted in being pretty amazed at how my body works.

My experience with corsets is not unique, and it is also not universal. I am sure some people continue to abuse their bodies while corseted. Different things work for different people. But there is so much negative stigma out there about people who wear corsets that it’s important to shed light on the ways in which corsets help many of us. Society sees corsets as oppressive garments that women only wear for attention, but many of us who wear them have found them to be extremely helpful on our journey to radical self-love.

Blessings,

Rev. Katie

Corseting: Embrace Your Own Beauty Standards

This post was originally written for The Body is Not an Apology, where I am a Content Writer.

When I went to my first corset booth at a Steampunk convention, I was very embarrassed. I had only seen corsets in the media on very thin models, so I was sure that no one would make a corset big enough to fit me. The artistry of these handmade, steel-boned garments was amazing, though, and I had to inquire about them. 

Wearing my "Dollymop" corset from Dark Garden.

At the booth were men and women, of all shapes, assisting customers with trying on corsets. The corsetier had many plus sizes available and was happy to make a corset in any size you needed. This was the first shopping experience I had had where I did not feel out of place and as though everyone were wondering why I was there.

Last month, I was able to stop at Dark Garden Corsetry & Couture, where I was also pretty nervous because they make corsets for Dita Von Teese. I felt like I did not belong in a shop that creates garments for beautiful people. The woman who helped me never batted an eye, never questioned my size, and never treated me as though I were not good enough to belong in a place that clothed models and performers. She treated me with such respect that I felt safe and accepted, which is rare in my life.

I have come to find that the corseting community is extremely body positive. Most tightlacing groups and blogs all have a “body/corset snark free zone” label on their pages. They do not allow body shaming or shaming of how you choose to wear your corset. I had never really been in a community like that. People of every gender, ability, shape, size, ethnicity, culture, and country all come together around this one topic where we all support each other in being body positive and practicing radical self love.

Being part of this community has taught me to be snark free when talking about my own body and the bodies of others. It has also allowed me to learn to not care what other people think about what I look like.

At first, I was scared to wear a corset in public, especially since I like to wear them over my clothes because it is easier to adjust them if I need more pressure when I am anxious. The first few times I wore a corset in public, I did have people comment on it: “Can you breathe?” “Is that safe?” “That’s inappropriate.” As I spent more time in the corset community and saw so many people supporting each other and the concept that no one gets to tell you how to look or judge your character based on how you dress, I started not listening to other people and their beliefs on how I should dress. I am learning to say “Eff Your Beauty Standards.”

Plus-sized model Tess Munster started the “Eff Your Beauty Standards” campaign. She says, “For everyone that says we can’t show our tummies, wear a pencil/form fitting skirt, wear a bikini, wear sleeveless tops... YOU can! I want YOU to join me in wearing "daring" fashions & stop hiding your body because society tells you to.” (Tess looks great in her corsets.)

As I have learned to feel less ashamed of myself and follow my own beauty standards, I notice that people don’t really comment on my corset anymore. At least, not negatively. If I go into a room with my head down and my arms crossed to cover the corset, people feel the need to say negative things to me. When I go into a room confident and I don’t focus on my corset, I get no negative comments. In fact, my confidence seems to make other people more comfortable in telling me that they like the corset, especially older women who tell me all the time how pretty the corset is.

I still wear the corset under my clothes or under a jacket when I am in places that I know are unsafe. Usually, those are places where people want to try and exert their power and seek to shame me. One day, I will not hide it in these places, but emotionally, I am still building up to being ready to handle a verbal attack. I don’t think I would have ever gotten to the point where I was actually confident in what I wear- not the “fake it ‘till you make it” confident I had been practicing my whole life had I not started wearing a corset and participating in such a supportive community.

Blessings,

Rev. Katie