Parkinson’s and Depression: My Perspective

It should be obvious from my blog posts that my husband’s Parkinson’s Disease is not a death sentence. It is a “shit-this-sucks!” sentence. The disease has slowed down Chris’s ability to move and, perhaps, to think.

But it is not a stopping or a slowing down of the love he feels from and to and with other human beings.

Chris was diagnosed with Parkinson’s Disease about 12 years ago. His first symptom was stiffness in one arm. It didn’t swing much when he walked. He seemed to have an ever-so-slight drag in his step. More symptoms, such as a mask-like visage and stooped posture, have appeared since the time of his diagnosis. The years have not been easy.

Chris still thinks he got a better deal with a Parkinson’s diagnosis than a diagnosis of A.L.S. or some other fast-acting kind of cancer. He thinks Parkinson’s is not the worst disease.

Like Robin Williams, Chris is (and was) an extraordinarily talented comic and dramatic actor, conversationalist, and, yes, humanitarian. Chris is not acting that much anymore. He’s winning awards for his translations of Chekhov. He’s working on writing projects and directing plays. (He’s still a pretty good conversationalist and humanitarian.)

More importantly, he continues to excel at loving his children and his family. That is essential.

Now, about depression.

This is tough to talk about. Chris was briefly on anti-depressants (Lexapro, I think) for a malaise or depression that may have appeared around the same time as his Parkinson’s. He felt that the pills did not help. He felt that it was just one more damn pill to take. He has to take a lot every single day to keep his neurons firing.

The neurologist did not push these pills. He addressed my complaints about Chris’s symptoms by suggesting that they fit the criteria of apathy, not depression. And apathy, Dr. Ford said, is more annoying to the people living with the apathetic person than to the person who has the apathy. (And there was a bit of joking that I, as the complaining party, was the one who needed the antidepressants. Not the identified patient. But I declined.)

endgame
Chris and his friend Dan are making a documentary about their life in the theater and with the disease of Parkinson’s http://www.theendgameproject.com/

Apathy, turns out, is not an uncommon side effect of Parkinson’s.

From my point of view (and I have encouraged Chris to write from his perspective), depression, apathy, and Parkinson’s Disease – these diseases do, in fact, totally suck. They deplete the quality of life. Because Parkinson’s is a chronic and progressive disease, the symptoms continue to worsen. The disease and its symptoms require a person to constantly fight inertia or apathy. Or depression.

And for some, perhaps Robin Williams, who carried a compounding of diseases, the heavy weight of the battle was too much to carry. (I am not judging. I am writing from my own point of view. I know that we — every single one of us — is fighting his or her own battles. I cannot judge. Only love.)

From my experience, the part of a human being that is capable of giving and receiving love does not seem to be affected by Parkinson’s Disease. Perhaps, one’s capacity for love is what makes us human. And life worth fighting for. (But, again, it may not be enough.) Is love, in fact, what makes life worth living?

Just for today. One day at a time.

When all else – body, mind — fails, perhaps, we should celebrate when love remains.

The Sharing Economy

I’m a believer in the sharing economy. I think the world is changing. We are no longer worshipping at the altar of capitalism. We are divesting. I love minimalism.

The point of life is not to accrue, but to share. The more you share, the richer you are. Here are my examples: On my blog, I’m oversharing. I’m into carsharing and bikesharing.

And I’ve jumped into housesharing. My first experience was a few weeks ago with AirBnB – it was  wonderful.

AirBnB

Chris, Hayden and I were in Vermont. We were visiting the girls at camp. Charlotte was in the show, Twelve Angry Women, an all-female production of the classic Twelve Angry Men. The show got out late so rather than driving back across Lake Champlain to the Adirondacks, I drove us fifteen minutes to a neighboring town of Essex Junction. We stayed with Mike and Iris whom I’d booked with on AirBnB.

Mark and Iris, 50 ish, greeted us at the door at about 11 pm. They showed us in to a screened-in porch and laid out a cheese and fruit platter. They were friendly and very good listeners. I’m a huge fan of deep listening. But they were good talkers too. We chatted about politics, parenting, and the arts. We could’ve talked well into the night. But finally, we went to bed.

Hayden had his own room and so did we. We had a private bath. I think the two bedrooms were formerly their grown sons’ rooms. Breakfast was lavish, delicious, and healthy. Mark and Iris have opened their house to 70 some travelers over the past four or five years. They said everyone’s been interesting and nice. Their experience with housesharing has been great.

A week or two ago, Hayden and I trekked across several states, staying with family, friends, at hotels, at a guest house in Chautauqua. Outside of Cleveland, we were going to stay at another AirBnB – a former Brooklynite, actress and writer – Hello, new friend! But that didn’t work our –some glitch in the listing and they didn’t have two rooms. No worries, I received a full rebate. And we had an even better time with old friends.

I asked Hayden, “Among all the places, the half dozen, where we’ve stayed in the past few weeks, where was your favorite?”

“With Mark and Iris,” he said.

Chris and I are going back to stay with Mark and Iris on Sunday. The girls are in another show — this time, my darling has the lead in Drowsy Chaperone! (brag!)

Because of our housesharing experience, I’d love to open our big, gorgeous, family-friendly apartment to weary travelers, but I think it’s still a sticky wicket in the city. (And I do not want to jeopardize our lease.)

In any case, I’ll find new ways to share.  That’s the trend and the currency that counts.

 

TwelveAngryWoMen
Charlotte (in black and white) argues a point. Twelve Angry Women. Jury room dispute.
FentonDeaconessHome
Fenton Memorial Deaconess Home in Chautauqua Institution, one of our stops on the road trip.
LakeChamplain
Our beach on Lake Champlain. Sharing room on the raft.

Bloomsday

Celebrate fiction. We all know that fiction is truer than real life.

This summer every person in my family is taking a big trip. My oldest goes to Botswana tomorrow; the girls to camp in Vermont next week; and then, my husband fishing to the Canadian wilderness. I am going nowhere.

Wait. I am going to be in Dublin — just for a day. Just in my mind. On Bloomsday.

I’m going with the Irish American Bar Association. You don’t have to be a lawyer to attend. I’m not. Join me. Buy tickets for Bloomsday with the Irish American Bar. The event is so inspiring. I have attended several years now. It is always hilarious and moving. And reminds me of the reasons I love the First Amendment and this novel that opened up the possibilities for our literary creativity.

“Copyright, Creativity and the First Amendment,” will be delivered by the Hon. Gerard Lynch, United States Court of Appeals Judge for the Second Circuit, and will be followed by readings from Ulysses.

I like to introduce my tutoring students to James Joyce’s Ulysses by asking them to read and riff on Molly Bloom’s soliloquy. Lay out your own stream of consciousness. Yes. And yes.

I like to show them that this, some say the greatest work in the English language, breaks all kinds of rules.

Joyce said of his work, “I want to give a picture of Dublin so complete that if the city suddenly disappeared from the earth it could be reconstructed out of my book. – said in 1918, from the book James Joyce and the Making of “Ulysses” (1934).

The pity is the public will demand and find a moral in my book — or worse they may take it in some more serious way, and on the honor of a gentleman, there is not one single serious line in it. – from an interview published in Vanity Fair (March 1922).

And some people had their shoes off and were w...
This is not Ireland. This the Riverdale section of the Bronx. And yes, some people walked barefoot in the grass #wavehill #bronx via mbcoudal

 

heaventree of stars hung with humid nightblue fruit. – James Joyce. Ulysses.

It soared, a bird, it held its flight, a swift pure cry, soar silver orb it leaped serene, speeding, sustained, to come, don’t spin it out too long long breath he breath long life, soaring high, high resplendent, aflame, crowned, high in the effulgence symbolistic, high, of the ethereal bosom, high, of the high vast irradiation everywhere all soaring all around about the all, the endlessnessnessness… – James Joyce, Ulysses.

 Amazing, right?

Yesterday’s WordPress prompt verbal ticks. And yes, Molly Bloom had a verbal tick. And yes, I will hear it on Monday. Can you come too?

Is there a word or a phrase you use (or overuse) all the time, and are seemingly unable to get rid of? If not, what’s the one that drives you crazy when others use it? – Ben Huberman

Something Good About to Happen

I have had this uncanny sense that I’m about to experience some miracle.

Is it the onset of summer? A time of less work? I have been freelancing, leading workshops, substitute teaching, tutoring and working my ass off. Okay, I wish I worked my ass off, just a little — not that my ass is too big — but well, you know, metaphorically.

And then, there’s the work of family life — the endless meals and maintenance that my three teenagers and disabled spouse require.

But two of my darlings will be in summer camp and one will be on a school trip to Botswana soon. And my husband will be on a fishing trip in Canada. So, maybe it’s just that — soon, for a couple of weeks, I will have less responsibility. I will be free. I can watch what I want on TV. I won’t have to work so hard.

Maybe, it’s the longer days and the light. The birds are definitely chirping when I wake in the morning.

Long summer days, picnics, in Riverside Park.
Long summer days, picnics, in Riverside Park.

I can ride my bike everywhere and I am always happy on my bike.

I can’t quite put my finger on why I feel lighter in spirit. I just know that something good is about to happen. And I wonder what it is.

 

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Getting to Why

Writers working on their stories at the first writing weekend at Skenewood.
Writers working on their stories at the first writing weekend at Skenewood.

When Kelly and I started boot camp for writers almost two years ago (wow!), Felicity Fields, web developer and marketing guru, told us to watch this Start with Why, Ted Talk by Simon Sinek.

Sinek’s point was that you need to frame your business so that the why, or purpose, is clear to your customers. The purpose of Apple is not just to offer great computers, but to challenge the status quo. People dig that.

“People don’t buy what you do, they buy why you do it.”

What is the ‘why’ of boot camp for writers, our writers’ collective?

  • to build a writing community
  • to disrupt your life
  • to tell difficult stories
  • to make the story of your life a hero’s journey.

Since starting this biz, tbh, (to be honest), I’ve hardly made any money. Maybe because I’ve been offering free Meet Ups or the cost of the space sinks me or maybe it’s just that I’ve valued building creativity over building capital. They say it takes three years to be profitable in a new business venture. Most of my income’s come from my freelance writing, teaching and videography work since I left my day job,

I still believe in my biz. When I come home from offering a writing weekend or an evening workshop, I think, wow, that was great, this business is much-needed. I have a why.

So here’s your why — join boot camp for wrtiers: be a part of a community; disrupt your life; tell your story; and give your narrative a purpose. Know that you are the hero of your journey, not the victim of your circumstances.

We can talk more about this over coffee on an Adirondack chair in the morning watching the sun rise over Lake Champlain. Or over a glass of wine as the sun sets off of the patio. Come to the beautiful Adirondacks mountains. May 29 to June 1. There are still a few private rooms left in this 10-bedroom manor house.

house
The Adirondack retreat is held in this beautiful 100+ year old house in Westport on Lake Champlain, NY.

Full weekend including private room: $530, all meals, lodging and pick up from the Westport, NY Amtrak train station. Register at: Adirondack Writing Weekend.

Here’s a video from the first fall writing retreat for writers: http://www.youtube.com/watch?v=HYKWfbgd6nU And here are pictures of the historic manor house where we will write and dine. Visit: http://www.vrbo.com/382611.

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Bridges of Madison County

While Hollywood continues to ignore women, Broadway continues to do an awesome job of letting women run the show. This is a delicious musical made from a bestselling book. I never read the book, because I thought, “Oh, that’s trashy reading, not for me. I’m so literary.”

But this show was for me. The musical explores stay-at-home mother Francesca’s complicated feelings when a handsome artist, a photographer from National Geographic, crosses her small town path, just for a few days.

I made the mistake of going to see this with one of teenagers. I should’ve seen it with a girlfriend. Because, yes, it’s a show about an extramarital love affair, but it’s also very much about best friends and women supporting each other. I need to debrief this show.

As her affair unfolds, I worried that our heroine, played by the brilliant Kelli O’Hara, was going to be busted by the gossipy neighbor Marge, played by the funny and charming Cass Morgan. But Marge never outs Francesca. She helps her. See, there’s marital loyalty, which is on the wane, and then there’s girlfriends’ loyalty, which never goes out of fashion.

I love the singing. And I love the set. The covered bridge is this simple, floating, bare-bones structure, not an oppressive, dark archway. Nice. I’d like to think that this ‘lightness of being’ can translate into our idea about marriage too. Marriage, a covered bridge, can be lighter and less oppressive than it looks.

Francesca’s heaviness of marital love is brightened by something — or someone — light. The two artists are drawn to each other, even in Iowa, even in the 1960s.

I love the way they talk about art and photography. I love the story.

Marriage is simpler and more complicated than it seems — less trashy novel, more sophisticated musical. And Francesca was loyal and unfaithful at the same time. Bridges of Madison County got me thinking about all that.

bridges of madison county
(Kelli O’Hara and Steven Pasquale, courtesy of Bridges)

Disclaimer: Thanks to Bridges of Madison County and the Serino/Coyne group for the tickets. The opinions on this blog are always my own.

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Beautiful – The Creative Process

The other night I saw Beautiful: the Carole King Story. It was an awesome rumination on the creative process. Want to be creative? You have to be dogged.

Sure, King (born Klein) was brilliant — the characters mention several times how she graduated high school at the age of 16 — but she was hard working. I love that. “Good things come to those who hustle.” And our girl Carole hustled.

I loved that the musical shows how creativity is a collaborative and a competitive process.

Mary Beth Coudal, blogger, and Anika Larsen, who plays Cynthia Wiel in Beautiful.
Mary Beth Coudal, blogger, and Anika Larsen, who plays Cynthia Wiel in Beautiful.

The cast was awesome. Everyone’s raving about how amazing Jessie Mueller is. But so is Anika Larsen as songwriter Cynthia Wiel, Carole’s gal pal, foil, and competition.

Now, from my lonely feminist perspective, I must point out that King’s songs really defined a generation of women finding joys in being a woman, “You make me feel like a natural woman!” (co-written by her partner, Gerry Goffin.) So fantastic — a real anthem and celebration of natural womanhood. I, for one, in this age of Botox and plastic surgery, would like to return to the beauty of natural womanhood.

natural womanI also wanted a little more about how Carole came to love herself and not just the ups and downs of her romantic and troubled love for her fellow songwriter and husband, Goffin. But this musical shows one slice of her life. To find out more I think I will have to read her memoir, A Natural Woman.

This musical is amazing. Carole King’s talent and output inspire me. Go. See it Sing along.

“Get up every morning with a smile on your face and show the world all the love in your heart.”

Disclaimer: Thanks to Beautiful and the Serino/Coyne group for the tickets. The opinions on this blog are always my own.

 

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Presentation Skills

One of my recent ad hoc jobs has been assisting in the Columbia University graduate business school, coaching on presentation skills and strategic messaging.

I don’t want to give away all of my tips and tricks. But here’s some of what I’ve learned and taught.

  1. Plant your feet to make a point
  2. Make eye contact
  3. Breathe
  4. Be prepared, but not memorized
  5. Put it in a story form
  6. Show the benefits to your listener
  7. Use emotion

Let me explain what I mean by all of these. I’ll use myself as an example.

  1. Plant your feet and make your point. Don’t wander around. Don’t fidget with a pen either. I need to remember this. I’m a passionate person, and so I like to really emote! That’s fine (see #7). Sure, move out from behind the podium, but move on the pause, and stop when you speak. Plant your feet. You can move as you think. But stop when you talk.
  1. Look ’em in the eyes for several sentences. Six (?) years ago, when Hilary Clinton was
    Barack Obama
    Barack Obama (Photo credit: jamesomalley)

    debating Barack Obama, I noticed Hil scanned the crowd as she talked. Her eyes hopped from person to person. Not Barack. No, he spoke several sentences to one person, then moved his gaze to another person. Like #1, don’t wander – not even with your eyes. Fix your gaze on one person. Make sure they get your point and then focus on another person’s eyes.

I sometimes look up when I’m thinking. I do that on the pause. Then, I have to remember to look down and make eye contact when I talk.

  1. Breathe. A breath brings inspiration. Take time to think things through. I tend to talk fast. And so I get breathy and soft-spoken. When I take time to breathe, I’ve got fuller authority. I’m more centered. When you’re making a presentation, take time to inhale. Then, speak on the exhale.

4. Know your stuff. When I’m watching Shark Tank, I can tell that people who have memorized their whole pitch. If they lose their place, they’re lost. They only really need to know the salient points – their numbers, their benefit to the user, their unique factors. They don’t need the verbatim script, they need to speak just the basics.

5. Make a story. Everyone loves a beginning, middle, and end. Put your presentation in a story form — perhaps, a context of overcoming great odds. Or making the story about a heroic journey. You were lost and now you’re found. These story types are so primal and so inspiring. Everyone loves a narrative arc.

6. Show the benefit. I realized people were a bit self involved the first time I had skin cancer. I blogged about it. In conversations, people would ask me, “Does this mole look like yours looked?” People weren’t asking, “How are you feeling? What’s the latest?” No, they were telling me how they were feeling. All people are basically self-interested.

If your presentation is relevant to people, they will be interested. If you can help people learn about themselves or help them make money, then they’ll be into your presentation. I love inspiring people to learn about themselves. It’s why I love coaching writing.

7. Emote. Don’t be afraid to laugh, cry, admit that you don’t know something in your presentation. It’s all part of the human experience. People will remember what you say when you are passionate, but they may not remember your dry facts and figures.

Give yourself away. Go deep and don’t be afraid to be human. Get real.

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How To Talk About Your Business

Everyone loves a winner. So talk up your winning biz. You can take several routes.

The humble way – Shucks, we’re just ordinary plain folk who got lucky.

The hardworking drudge – Well, sure we’re a success, but all we do is work, work, work. And we never see our kids, spouses, or mothers.

The boaster – I’m pretty fricken’ amazing. That’s it. I kickass.

The passionate soul – I love this work. Man, I’d do it for free. It’s all I’ve ever wanted to do. And it’s a labor of love.

I suggest when you talk about your biz, mix it up and use all four routes. Go the humble, hardworking, boastful and passionate way. “We got lucky, we work it, we’re awesome, and by the way, we love what we do.”

Mary Beth Coudal and Cheryl Sandberg exchanged a few laughs at BlogHer in Chicago.
Mary Beth Coudal and Cheryl Sandberg exchanged a few laughs at BlogHer in Chicago.

Note: I say “we” because, sometimes people appreciate the ‘we’ better than the ‘me.’ Or at least, we think so. Who’s we? Me and Cheryl Sandberg of Lean In. I think she said something like this at BlogHer last summer in Chicago — how women are more powerful when we’re collaborative rather than competitive.

Even though I’m pretty much a shop of one, I feel like I bring a team with me on my assignments. Ya know, I get by with a little help from my friends.

This post was inspired from a post by Seth Godin, marketing guru.

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Be Disruptive

Yesterday I was at the awesome NYU Entrepreneurial Festival. A highlight for me was Luke Williams’ class on disruptive thinking. Here’s what I got out of it.

In your biz and in your life, chose the scary route. In this picture, look at the dude on the left, “Who is he? I don’t know — just the happiest guy I could find on the internet,” Williams said. “Why is he so happy? He’s complacent. He’s the face of all the companies we know. Doing what he’s always done, making small incremental changes.”

Luke Williams at the NYU Entrepreneurial Festival.
Luke Williams at the NYU Entrepreneurial Festival.

Like Kodak, everyone saw that Kodak’s biz was going down when digital cameras came along, but the CEO of Kodak basically said, “Why stick your hand in an engine that’s running?” If you’re the mechanic, you don’t reinvent the car while you’re supposed to fix it. Right? Williams is smart.

Now look at Janet Leigh. This is how your client or company should look — scared. And ready for change.

Hitchcock killed off his leading lady in the first 30 minutes of Psycho. No one had ever done that. Be like Hitchcock. Be counter-intuitive.

How do you do that? If sodas are supposed to be inexpensive, sweet, and aspirational; make them expensive, sour, and real.

Look for cliches — “widespread beliefs that govern the way people think and do business.” And then disrupt the cliches. Be like Little Mismatched, the company, that sells socks, not in pairs, but in singles or in threes.

Feed your own rebellious instinct — the one that wants change for the sake of change.

I plan to disrupt this endless winter with spring.

Spring starts in five days for me. I’m going to Sarasota, Florida for a few days, back to NYC for a few days, then to a dude ranch in Patagonia, Arizona with the family for almost a week, then just me and Hayden, my 11th grader, go to look to North Carolina (where I’ll offer a writing and art workshop with the fabulous Cindy Sloan.) And Hayden and I will visit a couple of colleges in Charlotte and Raleigh-Durham for a few days.

I have been so slammed with work. Tomorrow and maybe a couple of more days this week, I’ll be subbing middle school English at a nearby prep school. I’m also continuing posts and articles with my fabulous blogging client. I have lovely tutoring jobs. I have an annual report due for a new client. I have to meet with my mentor to get my paperwork signed for my self employment assistance program.

I don’t want to disrupt my busy work life. But I don’t mind disrupting winter to get to spring. And summer.

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Walking towards 8th Street near NYU.
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