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