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

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

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.