A beautiful letter by Robin Williams' Widow: "The terrorist inside my husband's brain"

Susan Schneider Williams wrote this letter, published on www.neurology.org, giving an insight into Robin William's last couple of months on earth. As has been reported, he was suffering from Lewy body disease. I was (and still am) a huge Robin Williams fan, and his suicide saddened me very much. Thinking that he could have been saved if someone noticed the signs of depression...

This letter clears up any misconceptions or confusion over his death. And now that I understand what he was going through, I completely understand his death. He was suffering. There was no other option. I would have done the same thing - if not earlier.

I am writing to share a story with you, specifically for you. My hope is that it will help you understand your patients along with their spouses and caregivers a little more. And as for the research you do, perhaps this will add a few more faces behind the why you do what you do. I am sure there are already so many.

This is a personal story, sadly tragic and heartbreaking, but by sharing this information with you I know that you can help make a difference in the lives of others.

As you may know, my husband Robin Williams had the little-known but deadly Lewy body disease (LBD). He died from suicide in 2014 at the end of an intense, confusing, and relatively swift persecution at the hand of this disease's symptoms and pathology. He was not alone in his traumatic experience with this neurologic disease. As you may know, almost 1.5 million nationwide are suffering similarly right now.
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The part that really got me was

He kept saying, “I just want to reboot my brain.”

I often find myself in tears saying the same thing. "I just wish someone could flip a switch and make my brain how it used to be"

Agh Robin. You were such a gift to this life.

Thanks for being responsible for the many of the few laughs I've been able to have.

-Alee

Honestly this is the first time I have heard of this disease. Knowing what he endured leading up to his death just fills me with overwhelming sadness. How to hide such a secret in the midst of the spotlight...

That was a tough read. Robin Williams was so special and brilliant-what a horror he lived. Absolutely heart-breaking. It is so helpful to hear their journey and better understand what happened to this magical, talented, gifted man. My children and I felt much pain when we heard he had died and how the portrayal of his death was revealed. Hope he is at peace; his magic is missed on a deep level.

It was wonderful his wife stood by him, she has been through much frustration, grief and loss, bless her heart. That was surely hard to read, but finally, everyone understands now how he died and not from auto-eroticism as people were claiming.

Just goes to show no amount of money can save you, but love and caring were with him till the end.

Robin Williams has always been one of my favorites. My family and friends use to drive by his house during Christmas time, there was always a dragon in his yard that was covered in lights, it was magical. Always looked forward to seeing that every year.

His comedy is the best, always makes me laugh until it hurts.

His death was devastating. I never cry when celebrities pass, with him many tears were shed.

So sad.

From OP source:

One professional stated, “It was as if he had cancer throughout every organ of his body.” The key problem seemed to be that no one could correctly interpret Robin's symptoms in time.

There is nothing worse than knowing something is wrong with you, yet all the doctors an specialists can seem to uncover the diagnosis.

If he had been diagnosed and given proper treatment, would he still be here? I feel sorry for his family, when a loved one commits suicide, that is hard enough. Knowing the suicide was probably a result of a medical condition he was suffering from that wasn't diagnosed and could have possibly been prevented, must feel worse, all of the what ifs that linger.

Glad his wife is getting the message out to neurologists about this rare disease.

Captivating from the start to the end s&F

Jesus, i can't even imagine the hell.

He was a brilliant man with a phenomenal mind. To have it begin to fail....had to be terrible for him. "Depression" doesn't really seem to define what he must have felt when taking his life was his only viable option.

I know folks who had interacted with him in various professional settings. The constant theme is that he was a very nice/normal guy who could turn on a switch and become the public persona we all know. The Robin behind the Robin, however, was by all accounts a good man.

a reply to: Gemwolf

Thank you for posting this--this is the first that I have heard of this disease.

Like you noted, his suicide saddened me greatly. In fact, it affected me way more emotionally than I had expected, but hey, I grew up on Robin Williams' comedies and other films, and some of my favorite all-time movies are "Aladdin" and "Hook," with "Mrs. Doubtfire" and many of his others holding a high spot as well.

I'm grateful that you shared this with us, as I doubt that I would have found my way to neurology.org any time soon. But damn, this line brought back a wave of sadness:

Monday, August 11, Robin was gone.

As far as celebrities go, he is one of the few that I wish I could have known on a personal level. Coincidentally enough, I just watched "Aladdin" with my 2-year-old daughter and 13-year-old son early this morning while eating breakfast. To be honest, I don't turn it on for them...

There are so many horrors we can experience through our journey here in these earthly bodies. Robin is a legend who brought much joy into the world and has touched the lives of many. He would be honored to know that.

I am glad that he had such a loving and dedicated wife by his side and that she continues to help people in whatever way that she can.

Robin Williams, you are loved and never forgotten.

Thought you all might like this, a song written in Robin's memory.

a reply to: Gemwolf

I guess I never bought into the media circus accusing Robin Williams of committing suicide. So I dug in deeper to the police reports of how William's body was found.

Allegedly he was found clothed, SITTING in a chair with a belt around his neck. The other end of the belt was TIED TO A DOORKNOB.

Anyone care to try it. Sit in a chair with a belt around your neck and tie the other end to a doorknob. How could that possibly be a "hanging"? All Robin Williams would have had to do is scoot the chair back. It is impossible to hang yourself with a belt tied to a doorknob. Plus his cellphone was in his pocket.

My theory is that Robin Williams was a submissive male who liked to play BDSM games. That Susan Schneider was the dominant. Because the 2 engaged in play power exchanges that others played with them and Williams was afraid of others taking his watch when he was tied up, so he asked a friend to hold his watch for him.

Something went wrong during a BDSM play scene and he suffocated with a belt around his neck. Susan and his Public relations didn't want all the bad press and decades of poor jokes like the lead singer of INXS got. So they clothed him. Put his cellphone in his pocket and tied the belt to a doorknob.

Then they created a media circus about suicide when it's impossible to hang yourself sitting in a chair with a belt tied to a doorknob.

Hell, even if Robin Williams had a 40% loss of dopamine producing neurons on autopsy, it's still impossible to hang oneself from a doorknob while sitting in a chair. The scene was staged post-death.

A 40% loss of dopamine producing neurons is typical with Parkinsons. But that isn't the cause of death. The cause of death is a belt around his neck. Asphyxiation.

a reply to: MapMistress

Most anything is possible if you really want it to happen. Plus, given his condition, his periodic freezes that his wife describes, he perhaps knew that he wouldn't be able fight it.