The one thing that having a diagnosis gives you, which is more valuable than almost anything else, is that it gives you an understanding that what's happening to you is not your fault. That's the real tragedy of Robin's life, is he didn't get to know that this wasn't his fault.
Tylor Norwood
Director/Producer of Robin's Wish.
Ten years ago, on August 11, 2014, the beloved actor and comedic genius Robin Williams died.
The entire world mourned and bonded over the man who gifted us with the biggest smiles and stomach-hurting laughter. So many celebrated his life by rewatching his movies, standup, and interviews, while others who knew him posted in memoriam and shared stories of his kind and generous heart.
At the time of his passing, not many knew how much he had been struggling with a multitude of growing symptoms. His wife, his closest friends, and a few doctors, they knew a fraction of it, based on what they saw for their own eyes. But only he knew the depth of his suffering, but not the actual name of the disease that was taking over his brain and his body.
His cause of death was suicide, but through brain autopsy, Robin was found to have Lewy Body Dementia. I’ve come to find that not a lot of people know this about him, and even more have absolutely no idea what Lewy Body Dementia even is. Sadly, this includes doctors, therapist, and other health providers that many turn to for help when suffering from life-changing illnesses like this.
At the time of his death, he had recently been diagnosed with Parkinson’s Disease, but as his wife has shared, he didn’t believe that to be his correct diagnosis. His struggles were beyond what he knew his friend Michael J. Fox dealt which in his long-term battle with the disease.
He knew it had to be something else. Yet, he died never having the answer. He died never hearing the truth: You have Lewy Body Dementia.
Dr. Bruce Miller, a renowned Neurologist who is one of few experts in this disease, stated that on autopsy, it was revealed that he had been facing “a devastating a form of Lewy Body Dementia that I had ever seen. Almost no area was left unaffected. It really amazed me that Robin could walk or move at all.”
How could it have been so bad, yet he didn't get an accurate diagnosis, let alone someone with fame, money, and resources on his side?
The answer, dementia is a widely under-diagnosed disease, and Lewy Body Dementia may be the most unrecognized and misdiagnosed of them all as it is not something that can be determined through a blood test or seen on an MRI.
I’ve thought about this a lot over the years, really ever since I first learned of his true battle during my own search for answers after finding an article written by his wife, Susan Schneider Williams: The Terrorist Inside My Husband's Brain.
Hearing their story, my heart broke for him and his wife. Every word she wrote spoke so clearly to me. This is just like we’ve been going through. I think I read it through two or three times in a row, taking notes in the margins and highlighting familiar symptoms and concerns. I knew their struggles, as someone facing the same battles and living without a concrete answer that so painfully impacted their life.
Something in me recognized that their story was ours. I truly believed that I had found our answer. I was also devastated that maybe this was it, instead of something that could essentially be treated or better yet cured.
But after all these years, knowing how haunting the unknowing is, I’d personally rather know. No matter how much it may hurt, or what the final outcome may be, there’s just an indescribable relief that comes with having an answer.
The knowing not only provides comfort and clarity, but the ability to live move authentically and own your truth.
To give you some control after a nameless disease has taken so much of it away.
To speak up and advocate, for yourself and all of those who need it too.
To fight the battle, with all of your strength and all of your might.
And maybe more than anything, to find peace within knowing exactly what you’re speaking up and fighting for.
I hope you found your peace, Robin. I thank your wife for sharing your story, and giving my heart an informal answer.
One day, I hope to have the formal one, and that it will allow me to finally find my peace.
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