Finding Beauty and Health Again

The experience with Coco at the hospital was pretty intense. And I feel a bit knocked off my life’s tightrope — balancing my paid work, my creative work and my (unpaid) family duties.

H. napping at one of the colleges we visited. He is an excellent napper.
H. napping at one of the colleges we visited. He is an excellent napper.

One such responsibility is supporting H. as he applies this week for early decision to a college. He needs a reminder to focus. He’s been coping with the added stress by napping when he gets home from school.

On Saturday afternoon, when I got home from the hospital, I realized I had to still feed and care for the kids. So I hopped on my bike to purchase rice and beans for Coco at La Caridad (the best Cuban Chinese food on the Upper West Side!)

There were a dozen limos on West End Ave. I wondered what was up. And then when I turned at 77th at the Collegiate Church, there were dozens of people pouring out of the church. It was a wedding.

And the sky was blue and the air was fresh, full of autumn but summer lingering. And I felt so full of life and beauty and gratitude. My kid was fine! We were going to be fine!

And people from the wedded were dressed up so fancily — men in tuxes and ladies in silk. I was elated.

At Caridad, I told the guy at the counter, “My daughter’s just out of the hospital.”

And he, this lovely tattoo’ed dude, said, “That’s great. You have two girls, right? And a son?”

Indeed, I do. I’m so lucky. My brother says, “Don’t say you’re lucky. Say you’re blessed.” Ya, that too.

The rice and beans were delicious. And I took a long nap.

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I find so much beauty in the flowers in Riverside Park. I love taking pictures with my phone.
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Blue sky, nothing but blue sky, and sunflower.

Frozen in the Pediatric ER

The good news is I finally saw Frozen. The bad news I saw it in the emergency room with my littlest angel Coco and her ruptured ovarian cyst. (Although there was some concern, it might have been an ovarian torsion that righted itself.)

She was in a lot of pain.

It was about one in the afternoon. I was getting dressed after a spin class, a swim and a lovely hot steam room at the Y when I saw a text from A. “The school nurse is trying to reach you.” I knew it was bad because usually the nurse just keeps calling, she doesn’t phone your emergency contact.

I say usually because over the years I have had dozens of calls from the school nurse. Apparently, my kids enjoy the homey, comfy bed in the nurse’s office. So I don’t panic when I see the nurse as an incoming call.

This time I did. I was right to.

Coco was in a doubled-over, throwing-up kind of abdominal pain. She was wheeled into a car service with her 12th grade brother and they met me at the pediatrician’s who took one look at her and sent her to the pediatric ER — she recommended Mt. Sinai or Columbia Presbyterian. I chose the latter because we had such great results when Hayden required surgery for his fractured collar bone there – his little league injury. (And it’s the hospital where Chris goes for his Parkinson’s.)

In the waiting room, at 3 pm, we had to decide whether to hold Coco’s birthday party which was scheduled for that night. It looked like even if she recovered from the pain, we wouldn’t get out of the hospital in time. We postponed.

Over the next 24 hours, Coco had several tests — C/T scans and sonograms — and several doctors — pediatricians, surgeons and gynecologists to make the diagnosis of ruptured cyst. At first, it looked like appendicitis. But they could tell there was fluid in the abdomen which was likely causing the pain and the remnants of the burst. The fluid will be absorbed by the body over time.

We also had two visitors — Jacob and Sheila — both of whom are pals from church who live in the neighborhood. We were so happy to see them. They both really brightened our spirits.

We were in ER, first in the hallway, then in a room, until about 4 am. We moved to the children’s floor in the wee hours. The nurses who work with children are the best — patient, funny, smart. The doctors were wonderful too.

Throughout the night, I got very little sleep, curled up in a big chair with an upright chair by my feet.

But at one point in the morning, I snuggled next to Coco on her bed/stretcher. There is a feeling when you’re curled up with your child when you feel you are almost free-floating in a bubble. You are one tight unit, together and contained. The Mama Bear instinct really kicks in when your child is sick.

I joked with Coco, “I’m going to miss going to the bathroom with you when we get home.” (I helped her walk to the bathroom every time. She had to drag her IV pole, like walking a big, unwieldy dog.)

We did get home, about 24 hours after arriving at the hospital.

My husband had been visiting his sister in the Adirondacks for a day, he was scheduled to stay a few more. (And honestly, I had been looking forward to being single this weekend — attending the school homecoming, a conference at New Work City and a concert with Coco’s old friends). But Chris returned last night, a loving presence to the kids.

Coco’s recovering at home now; she’s not quite her spunky self. We will follow up with a gyn in a couple of weeks.

So, yes, Frozen was a good movie. Don’t wait until you’re in the ER to see it.

PS About the confidentiality of this blogging, I did ask Coco for her approval to post this. She also approved these pics.

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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.)

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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.

Wanted: Help

I do not like asking for help. At last week’s lecture on teen boys, Rosalind Wiseman said getting help is a lifelong skill, I agreed, intellectually.

I am the driver who does not like asking for directions. In fact, I am the sole long-distance driver in my family. Chris’s Parkinson’s Disease — or his meds — have compromised his ability to drive. My son does not yet have his permit. We don’t own a car any more. But I am the family driver, metaphorically too.

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At the Yacht Club with Lindsay a few weeks ago. We were toasting out new rules for living.

In 2009, on Lindsay’s birthday, we made up 7 rules for living on the back of a paper napkin while drinking champagne at the Yacht Club. This year we did it again, but had to finish up over coffee the next morning at the Inn. Lindsay Pontius and I made up seven new rules for living. And I will blog about these rules in the coming weeks.

In the last round of rules, my number one rule was Pile on the People. Which I then changed to Pile on the Useful People. Because, at some point, I felt that I was helping more than I was helped by helpful babysitters, caregivers, friends.

For example, I remember hiring a professional babysitter when Hayden was a tot. She took Hayden to the playground, while I stayed home and folded laundry. I loved the playground. I hated the laundry.

Luckily, at that time, I had a therapist, April Feldman, who helped me see the error in this equation. Do the fun stuff. Farm out the chores, like the laundry.

Because of Chris’s Parkinson’s, everyone says to me (and I say to myself) “Get help!” But piling on more people (for me) is often piling on more work. I am exceedingly generous, even to the point of bankruptcy.

This may have to do with my white (and wife) guilt for needing to hire caregivers at all. Caregivers are often people of color. I dont’ want anyone to think that I am better or believe I am better than they are. We are all equal.

The typewriter on the counter at the inn in Westport. So charming.
The typewriter on the counter at the inn in Westport. So charming.

So what can I do?

  1. Care about the helpers
  2. Go to the park
  3. Farm out the tasks I don’t like
  4. Get help
  5. See that asking for help requires practice.

I wrote this at the 475 Riverside Drive ecumenical library’s first and third Wednesday of every month writing group a couple of weeks ago.

The post was inspired by today’s Daily Prompt. The task was to grab any book, open anywhere, go to the 10th word. I grabbed Melissa Gilbert’s Prairie Tale: A Memoir. My word was “wanted.” As in, Wanted: Help.

The Road Less Traveled

No one knows this about me. But when I was an assistant editor in the biz school at Pace University, I thought for a day or two about going into nursing.

I was in grad school for literature at NYU at the time. I had tuition remission at NYU through my then-husband, but I could also get tuition remission at Pace. I debated about applying to Pace law school, but the campus was in Pleasantville or Westchester somewhere. That seemed like such a trek from my natural habitat of downtown Manhattan!

So I thought about nursing. I’d heard there were a lot of jobs. Besides, I had loved being a candy striper when I was a teenager.

"Acrobat in the Ring", sculpture by ...
I have always loved this sculpture, “Acrobat in the Ring.” by Chaim Gross at the Pace University, New York City Campus (Photo credit: Wikipedia)

Here’s the thing — I’m not cut out for it.

When my kids throw up, I gag, shudder and turn away. When they bleed, I feel woozy. And when they hallucinate with a fever, I find their hallucinations extremely funny and can’t stop giggling.

I don’t know how doctors and nurses do it — I guess they learn to control these impulses. Maybe I, too, could stifle my gag or my giggle.

So instead of pursuing law or nursing, (real practical skill-type jobs!) I took grad psych classes in critical thinking at Pace in the Straus Leaning and Thinking Center with Dr. Rachel Lauer.

The program blew my mind. I learned so much about learning. For ex., I first learned the word, meta. I learned about methods of thought, rhetoric, kinds of intelligence, and philosophy. I’m richer for it.

Sometimes I wonder what my life would be like if I had pursued nursing or law,  instead of writing and teaching.

The Road Less Traveled – The Daily Prompt

What  jobs did you fantasize about? Why didn’t you go down that road?

In our Boot Camp For Writers’ workshops, we offer a writing prompt on the road less traveled.

Don’t let fear win

So some cowards want me to be afraid. But I’m not going to do it. I’m not going to take up their fear. I’m going to keep loving people. I’m going to keep loving strangers even. Just because some idiots want me to be afraid, doesn’t mean that I have to. If fear is contagious, then so is kindness and hope. Sometimes hope is a harder mountain to climb, but I like a challenge.

I know it’s natural to catch the contagion of fear. It’s human. I may feel the fear but I won’t let it poison me.

I’ve been here before. After 9/11, I felt the collective fear. At that time, I’d wake in the morning and wonder if it was all a bad dream. Or I’d lay there and just wish that years would pass quickly so that the tragedy would be only a mild ache instead of a a pervasive pain.

And yesterday, I felt that poisoning pain again.

Still. I’m not buying fear. Instead, I’m buying the instinctive hope of the people who rushed to help. I’m buying the hugs and calls of loved ones checking in on each other.

I will always remember the line, blocks and blocks long, of people who wanted to donate blood to Red Cross after 9/11. Millions more people wanted to help than hurt one another.

Healing, like creating, is hard work. It takes a minute to destroy and years to rebuild. Still, I’d rather be in the business of rebuilding: lives, loves, hope.

Living with someone who’s chronically ill, I live with fear and worry. Parkinson’s Disease has challenged my husband, affected his posture, his walking and more. But I’m not going to let Parkinson’s win either. I’m not going to let a fairly inevitable trajectory of decline ruin my hope for him or for my family. Not today. I have hope today that from the ashes come some sort of new life and some inevitable spring.

I am going to hug my darlings close, write, teach, try to make my small corner of the world a little better than I found it. That’s what I’m doing today. And then tomorrow, I’m going to get up and do it all over again.

Because fear doesn’t win. Love wins.

In times of stress, I know I have to:

  • Connect with friends and family more
  • Work out more
  • Do more self care
  • Eat and sleep well

How do you cope?

at Harvard
Last month the kids and I visited Cambridge and Boston.

I Get Social Media

Do you feel like you “get” social media, or do you just use it because that’s where all your friends and family are?

I get social media. But to get it, you have to give it.

I am Facebook, Twitter, Instagram girl, but I put myself out there. I’ve seen studies that show the more engaged a social media user is, the happier she is.

Some people complain about social media, “I don’t want to know what you had for lunch.”

I admit I occasionally report what I’m cooking. When I recently updated my FB status, “Making chili, meat and vegetarian,” several cyber friends in several states were also making chili. Coincidence? I dunno. But it was interesting and fun and I felt less alone in my solo chili-making kitchen.

Sometimes I overshare. That’s me. I overshare IRL too.

As a wife of someone with Parkinson’s Disease, I feel connected to friends and family through social media. Apathy is a side effect of my husband’s disease. On social media, I can’t tell if people are apathetic towards me. I try to notice only the thumbs up, the cheers, the interactions that lead to deeper sharing. I affirm people, just like I like being affirmed.

In the last couple of weeks, I’ve connected in person with two different high school friends who were visiting New York. I wouldn’t have stayed in touch with them without Facebook. When we got together, we talked about deep stuff — how we felt different, theater, how we parent, what’s new with our siblings, how we work.

Of course, it’s scary to put yourself out there and swim in the social media community pool. It’s easier and safer, emotionally, to lurk, dangle your feet in the water.

My social media mania has one downside.

I was reminded of this jealousy factor, when I read: More kids than suitcases’ blog post about torturing yourself on spring break. Because yes, just by the look of some other people’s spring break pics, they’re having a lot of fun out there. I saw in friends’ feeds palm trees and London tea (different people obviously.) That made me wish I was somewhere fabulous.

But I was. I was somewhere fab. Making every day fabulous is one of my life goals. (Thanks to my former colleague, Klay Williams!)

Compare and despair. I try to post awesome pictures of me and the kids having a really good time out in the world. (See below!) Because a picture of one of my kids staring at the phone, laptop, or TV is boring. I post about things, people, and events that I want to remember. I don’t want to remember boredom, bickering, apathy, and negativity.

I want to remember doing cartwheels on the beach. I want to remember bike riding. I want to remember making each other smile and laugh.

This post was inspired by the Daily Prompt – Social Network.

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In the Slow Lane

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.

Les Mis

Yesterday I saw Les Misérables. This is my guilty pleasure. I love the musical. I have always loved it. Loved Anne Hathaway and Hugh Jackman and their vulnerability. I loved that they let themselves look like (or be covered in) shit. That’s an actor!

Today’s prompt is:

Tell us about a guilty pleasure that you hate to love.

I hate to love the movies, but they are my therapy.

They take me away. In the last month, I have seen a couple of awesome French films, Amour and Rust and Bone. And now Les Mis, which is set in Paris. The city is moody and dark, yet it is the city of light. This year we need a lot of  light.

I’ve wanted to go to Paris for years. I have friends there and a place to stay, but I feel it’s too far or too expensive. With Chris’s illness, I feel I should only travel close to home and only for a few days.

When I go to the movies, I go to Paris and am still home in time to greet the kids as they walk in the door after school.

One of the darlings went to the premiere and met the celebs. Here she is with Amanda Seyfried.
One of the darlings went to the premiere and met the celebs. Here she is with amazing Amanda Seyfried.

The life lessons in Les Mis are brilliant:

  • To love another person is to see the face of God
  • Show faith in and forgive people cast off by society just as the priest forgave the thief Valjean, played by Jackman
  • Let your children love and let them go. This song, “Bring Him Home,” by Jackman was a real tear-jerker
  • Care for all children, as if they were your own
  • Show kindness, always
  • Have passion for your cause
  • Know that change will come
  • Workplace squabbles can lead to prostitution

Maybe that last one is not a good life lesson, but you get the idea.

Believe in the power of passionate individuals to change the world. I know there are many more life lessons in Les Mis to explore, but I am heading to Middle-earth today.

Yes, I am going to see The Hobbit at noon.

And so I leave you with the words of Valjean.

And from a writing teacher’s point of view, I must point out these lyrics are so brilliant because they are so simple. Almost all of the words are one syllable, but they pack in so much emotion, just like the musical.

“Bring Him Home”

Bring him peace
Bring him joy
He is young
He is only a boy

You can take
You can give
Let him be
Let him live
If I die, let me die
Let him live
Bring him home

Daily Prompt: Time Capsule

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.