Rest in Peace, Brother Robin

Robin Williams has died.

I am speechless, but I knew I would see this one day. Geniuses & artists are prophets, in a way. He shared his genius – and we responded – for so many years. But he needed a sound love, resilient to his many voices, that were beyond him to control. His genius is what killed him, not suicide. Robin Williams rest in peace. You earned it. In spades. Thank you for all the entertainment, your work with Whoopi & Billy to help our poor. I will miss you. His flame consumed him.

Robin Williams As the days pass since his death, the many, many tributes and reflections about the role Robin Williams played in peoples’ lives show how widely, and how deeply, he reached us. He shared his genius with us, giving us not only the gift of laughter – one of the greatest gifts we can receive – but also often leading us to thoughtful reflection about our world and about our selves.

So much has been written these last several days not only about Robin’s life, but the reality of depression’s impact on a person. Hopefully a wide and deep conversation about this uncomfortable fact of life will be an appropriate and effective response to Robin Williams’ life – and death.

My friend Jim Coyle and I have been sharing with one another some of the responses to Robin’s death that other people have written and posted, and wanted to share a few of the ones that touched us and help us appreciate again what Robin Williams has given us.

Thoughts on Depression, Suicide and Being a Christian by Nish Weiseth.

Although it’s a crude humor website, posted this serious and insightful article: Robin Williams and Why Funny People Kill Themselves by David Wong. [Language alert]

Finally, an excellent post to end on, which includes two different and wonderful videos of Robin Williams: RIP Robin Williams: “I Only Knew that You Were Thirsty” by Sr. Theresa Noble.

Thank you, Papa, for our brother Robin.
Vicki and Jim C

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Christine Bryden: A conversation about dementia

Jim CoyleYesterday, July 17, 2014, was the 5-year anniversary of Vicki receiving her diagnosis of having something called “Frontotemporal Dementia” (FTD), and was told she had only 6 months to 2 years left to live.

I visited Vicki 4 weeks later. She’d been trying to find out as much as she could about this disease. One of the things she found really helpful was a book titled Dancing with Dementia: My Story of Living Positively with Dementia
written in 2005 by Christine Bryden, an Australian woman who had been diagnosed with FTD at the age of 46. She was told she had at most a few years to live. But 20 years later Christine is still alive, still educating people about dementia and advocating for effective dementia care.

Last year, the Australian Aged Care Quality Agency produced a video with Christine and her husband Paul about the experience of living with FTD.

They share their insights about living with dementia. Hers has been an emotional and spiritual journey, accompanied by Paul, a loving and supportive husband. She has a positive outlook on life, despite the challenges she faces each day.

After viewing the video, you can visit Christine’s website, Dementia from an Insider’s Perspective, to learn more about her amazing journey.

By the way, I read Dancing with Dementia: My Story of Living Positively with Dementia right after my August 2009 visit with Vicki. It was, and still is, a great help.


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Thanksgiving 1950

Thanksgiving 1950 – forever.

What child has not had a phone shoved into their face, with a mom saying “look who wants to speak with you??”. You roll your eyeballs at your mother, and, upon accepting the phone – MOST reluctantly – you are immediately connected to a relative, male or female, that is most likely homebound, or unable to attend the event.

My mom believed that my voice would make their day, in lieu of a table laden with turkey, dressings, mashed potatoes, and pumpkin & pecan pies. My childlike voice would convey the great day we were having apart from them, somehow make them cheerful, in their nursing home or living room. And anyway, if we didn’t convey that, mom was back to forking the potatoes, refilling the bugles and onion dip.

I did it to my kids. I ran out of things to say and would push the phone into their face, whispering ‘tell them you love and miss them’.

Never knowing how it felt to be alone on a special day. Eating meals on wheels, or a TV dinner. Or to be in a place so far from home, no one could understand. A nursing home, smelling like urine, TV blasting, and hearing the moans of those who don’t know where they are, calling out, to God, to anyone to bring them closer to home…

I hated prepping the plates, and taking them to our family that couldn’t attend, or I thought wouldn’t, come to dinner. When I had my own children, I would bundle them up and make them come with me. I didn’t feel wonderful, I felt irritated. Couldn’t my parents handle this better?

And now I am those relatives. It’s only fair I should endure what I had passed on. I am delighted with a text, an email… there are no phone calls in this generation, and no one shows up with a plate of food with little grandchildren around them. I sound cognizant. Therefore, I should be able to call or text myself. When they invite me I cannot come, I am overwhelmed with leaving my home.

So how could they know when I have a fear-free day, and want to be with them? I’ve turned down all their invitations. But do they know how afraid I am to leave the safety of my home? There are no words that I can use to tell them I am not the mother, aunt, cousin that I was. My world is narrow. My cousin, Jay, blew thru all of that. He knew when to call, when to text. When to stop by. And when to ignore all of the above. But Jay’s gone now.

I fear, Papa, that I have become a liability to my family. One daughter ignores, just as Jay did, whatever I say and stays part of my life. But the others, away from me, get irritated. Disgusted with my stupid repeated requests for contact. Yes, they will buy my groceries, but our visitation is 20 minutes or less. I hunger, not for turkey dinners or hot dogs on the 4th, but for them. To see them, take in what is going on in their lives.

Papa, I was so wrong in my youth to take the telephone, or accompany my Mom on holiday dinner runs. Or newspaper exchanges. Or make short trivial trips to the grocery store for them. I didn’t see that my mother was saying “I love you” with every action. “I love you” with every non-gripe. I’m late in the learning.

Papa, I wish I had learned the lessons you so afforded me. Instead, I passed along being disgruntled, burdened, bothered by family that needed so much more than a phone call or a plate of vittles.

I reap what I sowed, and yet even with that, my family surprises me. Because, despite all my best efforts, they love me.

As do you, Papa.

It’s me, Vicki

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Surprise Fourth Of July

The day dawned, so beautiful it almost choked me up looking out the window as the sun rose. A perfect day from Papa. I just lay there, the breeze shuffling the sheets, the birds singing. A perfect day…

I’d checked with my kids to see if anything was on the docket for the 4th. I remember the old days when we would gather at Beth’s cottage on a tiny lake, not much more than a large pond. We’d have a bonfire, the kids swam in the lake, we played Euchre or double Solitaire up in the cottage. We’d have burgers & dogs, and later hobo pies over the fire.

Someone always had a stash of Indiana fireworks. Dusk came, and we’d settle in for our own celebration. Then kids tucked into the loft, we’d say Good Night to the 4th of July.

So, for the first time in a long time, I was ready to be with my family. No Bertha Lake exists for us any more, but my kids have a boat in Grand Haven. I wanted more than anything to be there with them.

But they all said they had plans. I hinted that the sister who lived near me and I would love to come over. They said they had friends they were hanging with.

Disappointed, I texted my daughter, who said she was on her way to her sister and brother’s. Just after that they sent photos of themselves on the boat in the beautiful harbor of Lake Michigan.

In that moment it was like lightning struck & split me in two! A rage began in my gut, and spread throughout my body. An anger so hot it scared me. And I was over my head in sadness. and I needed to close FB and get away.

The day continued, bathed in rage, throwing things, cursing, weeping, screaming. It was like someone else was driving me. And then the dystonia started just as fiercely. I almost pressed my emergency button twice. Eventually, exhausted, I fell asleep.

I want to tell my family I’m sorry, but a part of me cannot yet. The embers of my anger are still easy to flare up.

I hope they know it’s not me. It’s the evil on my rotting brain.

4th of July

I know they have a right to a life without me. Each does the best they can given their lives. But I’m not ready to be without Vicki. I miss her, too.

So, Happy 4th of July weekend. I celebrate, by accident of birth, that I landed in the best country on the face of the earth. I am ashamed of my reactions, but there was/is nothing I can do when the other side of Vicki takes over.

Blessings. Papa, it’s me, Vicki

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Remembering Cousin Jay

Jay Mathews

Jay Mathews

My dear cousin, Jay Mathews, passed away Sunday morning after a tortuous 3 year battle with cancer.

I – and his family & friends – are devastated. He gave without asking, told the same corny jokes as my Dad, and was enthusiastic about life. He grew up on the AuSable River, as all my cousins did. He was a hunter, a fisherman, He worked in every kinds of profession you could think of: lumberjack with Uncle Claude, septic (Honey Wagon), carpentry, Weyerhauser (which left his lungs a bit messed), tree trimming – a jack of all trades, and master of many things.

And since I have come back to Michigan and have my diagnosis he’s been a Knight in Shining Armor, calling me with the family gossip, dropping by. He was going to take me on a riverboat ride to revisit the places we grew up with: Oxbow, Camp Gingerquill, Canoe Inn (now Gates), it was to be glorious.

When I was hit with the Christmas ice & snow storms, he came to help not only me, but my neighbors dig. What he didn’t say is he’d just finished another round of chemo and radiation, and had a knee replacement. Looking back, as he broke thru the ice encrusted snowbanks, I can’t imagine the extreme pain he was in. But he said nothing.

And so, I guess I should not be surprised that he told his family to not let me know that he was dying, losing the fight. When we spoke not so long ago, I asked how he was doing, and he said, “Great news! No more chemo!” and I wondered about that statement as I had heard that from my Mom’s drs. But he assured me all was good, going on about how his baby grandsons were going to be moving in across the street from him.

We griped about Medicare & Social Security, we talked about retirement vs disability. Investments, stuff.

We talked about the loss of Bonnie Fieren’s husband, he assuring me even tho I couldn’t go to his funeral we were going to all get together for a summer picnic. The whole of the Wells’ Cuz clan.

I will miss you, Jay Jay. You left us too soon. I was too slow to gather us all together one last time. But I am grateful for these last 5 years, getting reacquainted. I love you, Cuz. I’ll see you a bit later.

Vicki – feeling sad.

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