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In the Slow Lane

February 4, 2013 //
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When Chris was diagnosed with Parkinson’s Disease nearly ten years ago, more than one family member said, “Now you’ll slow down.”

I thought the same thing. And I thought this again as I left my full time work almost five months ago. I will relax more, volunteer more, work out more, write more. I will do all of these things and I will slow down.

Um, not so much.

As my husband slows down, I feel inclined to twirl in my life twice as fast.

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Last week my daughter and I went to New Jersey for a camp reunion. This was the view that late afternoon.

I know I overdo. One day last week, I left the house at 7:45 am and got home at 9:30 pm. This was the fourth day in a row with these kind of hours. I had so much to do!!!

On any given day, I like experiencing a variety of settings — the after school office, spinning class, lunch with a girlfriend, free wifi at the local cafe, teaching, subway to SoHo, a meeting about my short comedy film, happy hour.

The only time I am in the slow lane is when I run. My goal is always to run a 13-minute mile.

Having a spouse with a chronic illness has made me want to get out there and interact with the world more, because, at times, the sadness of the disease’s progression simply brings me down and I cannot stay there.

Yet as lively as I want my outside world to be, I want my inside home to be a safe harbor and a cozy nest. This mama bird wants to fly back home with a mouth full of worms. I want to chill in front of the TV with my chicks.

And I want to do it now because I know my chicks are going to start to fly away soon.

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Categories Caregiving, creativity, Fitness, happiness

My Mom, My Worries, My Optimism

December 14, 2012 //
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Today’s daily prompt is Write a letter to your mom. Tell her something you’ve always wanted to say, but haven’t been able to.

red barn

Took this pic a couple months ago upstate New York. I love a working landscape.

A few days ago, the prompt was:

A writer once said, “You are the average of the five people you spend the most time with.”

If this is true, which five people would you like to spend your time with?

My five people include dear ole mum, so this blog post fulfills two daily prompts.

  1. My mom – though I don’t talk to her every day (or even, every week) I think of her all the time. I thank her for passing down her good looks, sense of humor, personal style, and intelligence to me. Of course, she did this in combo with my dad, I know. But Mom still does yoga, teaches college, and stands on her head every day. What’s not to love?
  2. My secret garden – I would like to say more but, ya know, shhhhhh, it’s a secret. And it’s a garden. So ya… (it’s one of 7 Rules for Surviving, so revisit this post.)
  3. My three kids – they are my front and center; my alpha and omega. Everything I do and everything I want to do, I do for the darlings.
  4. Jolain and my girlfriends – When I became a mother, I found my center, but I also worried I’d lost my mojo. With a strong community of women friends, I’ve kept myself intact, even when I regularly lose it.
  5. Hal and my former colleagues. I know this is crazy, but I love my ex-coworkers so much. I love their intelligence and their passion for making the world better. I’m glad I’ve moved on from my full-time work, but this year, my heart and my social life is still full of the awesome staff from United Methodist Women and the General Board of Global Ministries.

I know many wives would put their husbands on their top five people. And Chris and I do have a great thing going, but, let’s be honest, the Parkinson’s Disease has really put a cramp in our romantic lives. We still are great co-parents and movie-going comrades.

Speaking of movies, next week our Screen Actors Guild special screening, Chris and I will see Les Mis and the Hobbit. How does anyone ever work full-time when there are so many amazing movies to see every damn week?

I have three persistent worries. And these are:

  1. Will we manage as we embark on two and a half months without health insurance?
  2. How long does my husband have in fairly good health? (I know, I know, no one knows how long any of us have, but with a spouse with a chronic disease, you worry.)
  3. How will we pay for our three kids’ college?

My sources of optimism:

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my mom and my daughter, my raisons des etres.

  • my boot camp for writers, my new biz
  • my ability to make funny jokes
  • my obtaining more wisdom and patience as I age, (right? tell me there are gifts to ageing)
  • my crazy creative writing students
  • my president
  • my belief in the restorative nature of nature
  • working out
  • movies and books
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Categories creativity, Nature, parenting, Rules To Live By, Uncategorized

Daily Prompt: Time Capsule

December 11, 2012 //
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2012 is drawing to a close (3 weeks left!). What would you put in this year’s time capsule?

collage for UMCOR

collage for UMCOR

I would put:

  • My collage art to promote UMCOR (United Methodist Committee on Relief). Am so proud! This was an early version.
  • My bike. Oh, my bike. I love my bike. Biking in NYC makes me happy.

    seen in a bike shop window in Portland

    seen in a bike shop window in Portland

  • My first (ever!) unemployment direct deposit check. Definitely mixed feelings, but overall grateful.
  • My new business cards.
  • Masks that the girls made at Art Students League. We all play roles, wear masks, make art.
  • Chris’s SAG movie pass. Going to the movies together has been a great way to connect. Due to Chris’s illness and our busy-ness, I feel we are ships passing in the night. But we’ve sat together at such amazing movies this year! Yesterday we saw Amour. Formidable! (my favorite French word!) Today we are going to see The Guilt Trip.
  • Abeach handful of sand from Siesta Key beach. The kids and I had such a restorative time hanging out at the prettiest beach in the world last spring. Great times, too, with my bro, Nicole, dad, and Marty.
  • A mosquito from the kids and my ill-fated camping trip to Fire Island.
  • Yoga mat. Because my mom still practices yoga and stands on her head.
  • Shake Shack fries. After teaching a semester of middle school creative writing, I take my kids to Shake Shack to celebrate.
  • School Swimming Pool and Van Cortlandt Park. I watch my kids play basketball, soccer, and baseball, but I spend most of my spectator time on the sidelines of the long benches of the pool or on the edges of the Van Corltandt Park track.
  • all the cousins

    all the cousins

    All of the cousins. Being with my four siblings and their kids for Thanksgiving was definitely the highlight of 2012.

  • President Barack Obama’s birth certificate. Just in case anyone, in the future, has any questions. The man is an American, all right already. Forward.

2012 was a very good year.

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Categories biking, Blogging, Caregiving, happiness, New Media, New York Stories, Uncategorized, Writing, yoga

Memories of Meeting Chris

May 29, 2012 //
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It was about 1992 and I’d recently come back from a retreat offered by Marble Collegiate Church about relationships. I realized three qualities I wanted in a partner were brilliance, creativity and financial independence. And after a few times hanging out with Chris, (thanks to a Kirk Douglas film he was in with a mutual friend), I realized Chris had those three qualities. And more. He was a good listener. I was attracted to these qualities.

He had been an English major and so had I. He was the only person ever to express an interest on the topic of my Master’s thesis – deconstructionism and psychoanalysis. English majors just generally tend to get (and love) one another. When I met Chris, he was reading Updike’s Memories of the Ford Administration. Here was a guy who loved Updike and was a good listener? Nice.

So life ensued. We married in ’95. The kids came along in ’97 and ’99. And after a bout with prostate cancer about 10 years ago, Chris was diagnosed with Parkinson’s Disease about 9 years ago.

Chris and Cat watch the trailer for the Endgame Project.

While I know many of you love Chris as an actor and an artistic colleague, and I, too, love the brilliance and the creativity, but there is another quality Chris has brought to my life which may not sound so sexy: his steadiness.

He is not literally steady, because Parkinson’s does cause his hand and arm to shake, but figuratively, he is a rock. When the kids were little, one preschool director, Holly, commented that she’d never seen a dad so involved with the kids as Chris was.

He’s a real family man. And even as the disease progress, Chris is aces as a parent. He still cooks and shops and walks the kids home from late-night parties.

And he listens well. He’s steady. And I like that.

He no longer reads Updike the way he used to, but then again, who does?

Chris is making a documentary with a buddy who also has Parkinson’s about putting on Becket’s Endgame. To see a clip of the documentary, link to: The Endgame Project.

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Categories Rules To Live By

Happy-Go-Lucky? Good enough!

April 10, 2012 //
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In the face of worry, I stay perky and productive. Chris does too. We continue to make a contribution — at work and at home. I want, need, and hope that we all stay as positive and productive for as long as possible.

Chris’s work is very meaningful. On the heels of his success translating The Cherry Orchard Off-Broadway and directing Picasso at Lapin Agile in Florida, he is performing in a fabulous production of Taming of the Shrew. He is also making a documentary with his friend Dan about having Parkinson’s as they rehearse for one performance of Beckett’s Endgame. (Checkout The Endgame Project.) We’re going to see the trailer for the documentary on Monday night.

So when people ask me, How is Chris doing? I usually say, “He’s doing great. He’s productive and he’s positive.”

As a family, we are doing great. Or, at least, good enough. And good enough is good enough. Lots of times, we are perky and happy-go-lucky! As I’ve said before, “We get by with a little help from our friends.” And family!

And when we feel sad about having to just get by, that’s okay. We’re human after all.

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Categories Caregiving, Rules To Live By

Driving with Parkinson’s Disease

April 9, 2012 //
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On the first day of vacay, just come back from the beach, sandy and relaxed, I got Chris’s phone call with the bad news.

After I drove myself and the kids to our flight out of JFK, Chris took the driver’s seat. About five minutes later, he rear-ended a car. It was on the ramp from the airport to the highway (the Long Island Expressway?). He had been fiddling with the radio and didn’t see the car stopped at the red light in front of him.

The airbags inflated. No one was hurt. Our car was totaled. Chris told me, “My driving days may be limited.”

That night after I got that call, I didn’t sleep well. It didn’t ruin my vacation. It just felt like a signpost on the unhappy road of the progress of Chris’s Parkinson’s Disease. (He’s had PD nine years now.) Parkinson’s is a steady decline.

I have not enjoyed driving with Chris for years. Lately, he could hardly drive a city block without me clutching the dashboard or pressing my foot on a phantom break. I tried to bite my tongue, but often blurted out, “Look out!”

So, when we were together in the car, I always drove, especially with the kids in the car.

This is tough stuff. But I’m glad I didn’t have to tell him, point-blank, “I think your driving sucks.” How do tell someone that? It feels terrible. Yet, it would feel even worse if there had been a serious accident and I’d have to apologize to some stranger, knowing as I did, that his driving sucked. Maybe a small fender-bender is a blessing in disguise.

When you live with someone who is chronically ill, you have to pick your battles. You have to witness a decline. And you often don’t want to speak your truth.

You have to take over the driving. Sometimes it’d be nice to doze in the passenger seat and trust that the driver’s doing just fine. That doesn’t happen when you’re married to someone with Parkinson’s. At least, it doesn’t happen for me.

He can drive other things, but he can’t drive the family car. For that matter, neither can I. Because we don’t have one any more.

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Categories Caregiving, marriage, Rules To Live By

Teaching

February 27, 2012 //
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When you teach, you have to think. You have to look at things in new ways. I like thinking new things, but I don’t always like acting in new ways.

my class

I have been teaching more than usual lately. Last week I led a seminar on Writing Your Spiritual Autobiography at New York Theological Seminary.

In the fall, I taught a weekly creative writing class for middle school kids.

When you teach, you can’t multitask. You know, there’s no schmoozing by the water cooler or reading the paper with your feet on the desk as a teacher. You have to be on — prepared and smart.

I like that. And I like being in the zone of teaching. It’s a change. And today, I don’t necessarily think I can make any big life changes. While my marriage is hard, due to Chris’s Parkinson’s, we all still love each other. And besides that, the kids (and Chris? and I?) need stability.

And so to get out of my rut, I teach. I am grateful for the opportunities to indulge in this happy and meaningful pursuit (distraction from my real life).

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Categories Rules To Live By

My Four Directions

December 31, 2011 //
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Today I took a walk in the North woods.

  • East is the direction of new beginnings, a sunrise or a new friend.
  • South is for the brightest light, the way the Southern sky fills the outside world so completely that the light must tumble into your room and heart too.
  • West is the land of the sunset and of letting go.
  • North is the direction of the North Star, the unchangeable and fixed beam in a velvet black night.

Native Americans value theses four directions and offer prayers and gratitude for Mother Earth and her four directions.

To say good bye to 2011 and hello to 2012, here is my take on my four directions.

My East is my mastery with writing. In 2011 I wrote a lot. I was published in cool places and won a few nice awards. I taught some amazing people and made new friends. My writing and indulgence in creativity made every day new.

My South is, of course, my kids. They brighten every single day. And as my neighbor Ron says, “Not one of them is a shrinking violet.” They bring me so much light and laughter (and yes, tears and frustration and hard work too.) But always, they fill my life with light.

My West is the sadness around the decline in intimacy with Chris due to his Parkinson’s Disease and our differing levels of energy and engagement. This is a place of light and dark for me, and a sunset on certain dreams that we used to share.

My North is my faith in a Higher Power, not always seen but always felt in a tug towards compassion and creative living.

This post was inspired by The Circle of Wholeness: New Year’s Reflections http://dld.bz/aAZrw by Joel and Michelle Levey

What are your four directions? Your beginnings? Your light? Your sunset? Your North Star?

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Categories New Media, Rules To Live By

Married but Living Single

December 18, 2011 //
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Christmas lights at Columbus Circle

There is a buoyancy when I have the kids to myself. I know I am not the only married person to feel this way. Lots of married friends tell me they love when their spouse travels for work. They can parent their own way — lay down the law or lighten the load.

But there’s even more relief when the chronically ill spouse is away for a few days. Around 11 pm, when I was unplugging our Christmas tree, my son asked, “Where’s Dad?” (He’d been gone since 7:30 in the morning.) “He’s playing Scrooge at a reading in a theater upstate. Will be back Monday.”

I felt guilty for feeling so happy to have my kids to myself. Mea culpa for not sugarcoating my situation and telling you that I love helping my husband pull on his shirt or tie his shoelaces.

Surely I could be more loving and patient. I am often in a rush, especially in the morning. Being married to someone with Parkinson’s Disease slows the caregiver down too. I need to shower. I need to launch myself and the kids into our day. I need to get to my desk at work with a focused mind. I would rather not remind someone to take their pills.

Last night the kids joined me at a Christmas party where we sang carols. We ate lasagna; they drank hot cider and I drank mulled wine. My burden was lightened — we were singing and sipping and chatting. And I chatted about deep things. My kids got bored. (I love when they get bored! I love giving them memories of hanging out at an adult’s party, eavesdropping and playing board games.)

My December goal — to throw and go to beaucoup des holiday parties is working out well.

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Categories New York Stories, Parenting Tweens, Rules To Live By

worry is contagious — so is hope

October 20, 2011 //
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At our social media mania workshop in Albuquerque yesterday we had an awesome group — a lot of knowledge and a lot of support for each other.

Outside the San Felipe de Neri Church in Albuquerque

When Beth (Buchanan) asked for questions on post-it notes, one participant, S., wrote, “My mom cyber-stalks me…I’m scared to blog-because she’ll read it.”

After the workshop, I looked for S. but didn’t find her. I wanted to chat about her question and reassure her. Then I realized I hadn’t called my mother in a week so I called Mom to tell her how great I’m doing.

But Mom had feedback for me. She’d read my recent post on Getting Help. And I have to admit I put the phone on speaker as she spoke and pushed back my cuticles. She said, “You should get more help. The Michael J. Fox foundation will help you get care for Chris and the kids.” She is always after me to contact the Fox foundation for help.

“Mom, I think it’s true that the Fox foundation is a caring organization,” I said. “But I think their money goes into research and not into hiring home health care for people with Parkinson’s. And, as I mentioned in that blog post, I am getting help for Chris. Although, yes, it’s hard for me.” (Did that sound defensive? Um, yes, a little.)

Mom said she’d seen Michael J. Fox on Letterman or some late night show and that Fox reminded her of my husband. “He is not doing well,” she said.

Hmmmm. Here I am at this wonderful UMAC conference, wanting to brag about how great my presentation went. And I want to be worry-free (and free) from my little family for a few days and now I’m getting worried all over again. And I’m worried about worrying, because what if Mother reads this? If you do, you know I love you and I thank you for having good ideas, concern and love for me! ;)

But here’s the thing — worry is contagious and I don’t want to catch it.

The view from my hotel room. The sun was so bright, I had to look down.

I stopped writing this post this morning to think. I went out to my little patio to look at the sunrise. The sunlight blew me away. The sun is much bigger and brighter and closer in Albuquerque than in New York City. There is something valuable, beautiful and worry-free in a big bright morning sun.

I did find S. after this morning’s session. And S., Beth and I talked about the challenges (and joys?!) of having tech-savvy mothers who read our blogs, tweets or updates and then praise, worry or comment.

I vowed to Beth and S. to be a mother who does not cyberstalk her kids on social media. It may be impossible. Like my own mother, I want to protect, get help for and read them well.

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Categories Christianity, Parenting Tweens, Rules To Live By
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