quotes

On Parkinson’s, suicide, Robin Williams, and art defining life

© Featureflash | Dreamstime.com - Elijah Wood, Robin Williams, Photo

© Featureflash | Used with permission. Elijah Wood, Robin Williams

When the first headline mentioning Robin Williams’s private diagnosis of Parkinson’s crossed my feed, I wanted to collapse with shock. I couldn’t believe it.

I’d already been on a two-day crying jag about his suicide. He was a big part of my childhood, and his face was very familiar to me from so many amazing works. But I didn’t know him. I couldn’t understand why I couldn’t seem to recover from the news.

I think at first it was because it’s so hard to see someone so beloved, so talented, with so much love in his life, doing this, taking such a final step.

But now, I understand another piece of the puzzle.

For the last year, Parkinson’s has been a big part of my life. My mom was diagnosed, and with every drug change, every new protocol, she calls and asks me to look up side effects, drug combinations, what she can expect.

It so permeated my life that when I wrote Forever Loved and needed a patient for my character to take care of in art therapy, his story line was much like Robin’s:

A great and beloved painter attempts suicide when his diagnosis of Parkinson’s stirs up fear that he will no longer be able to create his art.

I’m starting to understand now just how profound this situation can be. In Forever Sheltered, when this artist takes center stage, the art therapist, who attempted suicide at the age of seventeen, says this:

Albert really must have fallen hard to attempt suicide when his talent was so visceral. Even with the struggle to control his movements, he was easily the best artist I’d ever met or studied under, even in college.

If I were unable to do the one thing I loved, if some disease took that away, I’m not sure I would do any better. One thing I told the students who attended my suicide talks is that once you choose death as your destination, it never goes away. Every upset, every disappointment, every setback has the same way out. You don’t even have to search for it to know it’s still out there, waiting for you to stumble one more time.

In that, suicide wasn’t that much different from alcoholism or drug addiction. You could go to rehab or therapy. You could get it out of your mind for a while. And life could go well for months or years or decades.

But the moment it didn’t, in that instant when your depression or your struggle or your exhaustion hit that critical point, it all rushed back. And your mind went straight to the place you thought you’d twelve-stepped or group-sessioned out of existence. The needle. The bottle. The knife.

I wish there had been some other way, that there had been some treatment, some quick intervention, some help that could have gotten to Robin in time. My story has a much happier ending. Albert does find a way. He does figure out how to manage. And he starts to recognize the treatments will go up and down, work for a while, then fail, then another will work a while longer. It becomes an act of faith to believe that another good time will come, to counteract all those thoughts and emotions coursing through him without his control. But he managed to figure out that the disease didn’t define him, and that he could muddle through.

There was so much greatness still to go for Robin, and it is lost to us now. His brilliant ad libs, his appearances, his voice and acting that added so much to every project he was in. But I am grateful that we got what we did, and that his family shared him with us. And that his life, in death, sheds a little more light on an issue we could stand to learn a lot more about.

When your life’s calling comes, answer it

Faith is taking the first step even when you can’t see the whole staircase.

Martin Luther King, Jr.

Sometimes when I look around, I see a lot of lost people. Some are justifiably sad—tragedy is happening to them right now. Some have had past losses, and they look to those dark days as the reason why they are still living without joy.

Others are just taking life day by day, waiting for something, the One Big Thing they’ve always imagined, and regularly seem to sink when another night comes, and it hasn’t happened.

I had lost years myself. I spent my twenties in pursuit of nothing special. A whole decade of stumbling around, switching jobs, always wanting something else. The not-now. The better-down-the-road.

Then something big DID happen. Not a book deal or a lottery or sudden fame. The worst sort of thing. As I rolled down what would be considered an ordinary life—marriage-first-house-pregnancy, my baby died. Just died.

This is where my road divided. I had three choices:

  1. Feel stuck and bitter and grief stricken.
  2. Pretend it never happened and move forward.
  3. Turn this moment into my personal call to a life that mattered.

Everyone who is reading this blog knows what I did. I changed everything. Since then I’ve given speeches, run web sites, written books, and made myself as available as possible to any Baby Loss Mom who approached me. It’s been 14 years—coming up on 15 very soon and I haven’t slowed down one bit.

I was lucky. I recognized when life handed me a purpose. Loud and clear I got the message that this terrible event was the thing that could save me. And while I’d certainly trade my life now for the life I could have had with Casey, I made sure, absolutely sure, that I never doubted why I had been brought on this planet, and why he had, so briefly, made his small appearance.

I can tell you — there is a reason for you too. Somewhere in your life there has been or will be a Call to Action. My hope is that everyone sees it when it comes. And that it not only gets you through whatever is happening — life, death, poverty, oppression, bullying, loss, overwhelm — but that you grow so much from it that you expand and envelop others who can learn from what you have endured.

My wish is that you too can take your experiences and turn them into action, mold your life into a passion, review what you have survived and bring about change.

It’s in everyone. The tall and the small. Elizabeth is only ten and she gets it — she made her whole class study epilepsy last year and over half of them chose the Epilepsy Foundation as their non-profit to support in the community service. One purple scarf given to her last month means dozens more will be made in her Knitting Club to give to other kids.

Look around you. Look at yourself. Take what is difficult and turn it into good. Learn from what you did wrong and lift a stumbling block from someone else.

Be the change you’re looking for.

 Our lives begin to end the day we become silent about the things that matter.

Martin Luther King, Jr.

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