Tag: Conditions and Diseases

Grateful

Published on by mbcoudal1 Comment

Here are some things I’m grateful for:

  • yes, first off, my awesome kids, especially as they were good traveling companions over Thanksgiving
  • my family whom we visited in Chicago — all 5 of us Coudal kids were together with our families — so many fun memories!
  • my blog, my facebook, my instagram, my twitter — and even my foray into pinterest
  • my new bathroom lights (this may seem small, but as we live in a rent stabilized apartment, we get very few home improvements. The super was in our apartment when we left for Chicago and when we came back, voila! fixtures were installed!)
  • my quirky freelance gigs and steady income
  • all of my writing students — even my bratty middle school kids
  • my old friends, like from college and high school, who’ve been my friends for DECADES!
  • my new friends, like from new work city
  • my writing class
  • my love of travel
  • the NYC theater scene
  • my finishing a 5K on turkey day
  • my Upper West Side
  • the NYC citbike program
  • my bike
  • my secret garden
  • my health — because, it’s true, health is wealth
  • my optimism

When I am grateful, something in me opens up and I make room for more acceptance.

Gratitude is a practice.

I am not perfect. At times, I see too quickly what I am missing. Because of Chris’s Parkinson’s Disease, I am, at times, sorry for him, sorry for my kids, sorry for myself. Just sorry. And mad.

I have wished I was married to someone who did not have chronic health problems. But I want to remember to appreciate and celebrate what I have. I have a lot.

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me and my siblings and my mother
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I was in this crowd, running along Lake Shore Drive at the Turkey Trot
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my awesome kids over Thanksgiving

Wanted: Help

Published on by mbcoudal11 Comments

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.

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Potentially Bad News

Published on by mbcoudal15 Comments

Upon my oby gyn’s recommendation after a regular check up last Friday, I had a sonogram. The technician’s name was Lark. I could tell that she was measuring the length of something. I’m no doctor but when I got up out of the stirrups and looked at the screen, I could definitely see that I had some kind of cyst.

So, yesterday, after biking down to NPR to contribute to an interview about Chris’s Endgame project for RadioLab, I biked to teach my last Creative Exploration class.

I was in the back of the middle school auditorium at 5:15, when I saw that I’d gotten a message from my gyno Dr. Beth Simon. The message said, “You need a blood test and MRI.” My Creative Explorers’ performance was over and so I snuck out of the auditorium and left her a message to please call.

JennieAllen_4_25X51We talked by phone 20 minutes later. She said, the cyst was 4cm and part solid/part liquid, which is the kind they do not like to see.

“There’s a chance it’s benign. There’s a chance it’s malignant.” She was direct and unflinching.

When I said, “I’m worried,” she did not tell me not to be. She told me, “I’m sorry.”

She also said, “I was really on my game to feel that your uterus had gotten a little bigger.” I have to say that I loved her confidence and her possible early detection of something in me that is not so good, ovarian cancer.

So, this morning, before driving upstate, I am running back uptown for a a CA-125 blood test. If the number is elevated, then that’s not so good.

I debated about blogging about this, because I am unsure of the outcome and I am a little scared. But I process things through writing.

And my friend Jenny Allen wrote a play about her ovarian cancer, I Got Sick Then I Got Better. And also after seeing Chris Clavelli’s play this week,  it seems the more we talk and write about the tough stuff, the less hard it is.

Don’t let fear win

Published on by mbcoudal6 Comments

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.

In the Slow Lane

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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.

How’s Parkinson’s? It’s fine.

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heart in the sand
My niece Isabelle made this heart in the sand at the beach on Lake Champlain.

People often ask me how my husband is. I hesitate to answer. I try to gauge why they are asking.

Are they worried about him? Are they wondering how I am coping with his Parkinson’s Disease? Are they being polite and maybe don’t really want to know? If I stay too long on my answer, will I be perceived as whining or ungrateful? If I answer the question flippantly, am I in denial?

There are many gifts of love that our relationship has bestowed: mainly, the three awesome kids. And also people ask, How are the kids managing? To answer that, I usually say, “They’re great. They should probably be in counseling (as should we all), but we are all overscheduled and actually, we’re fine.”

Is it okay for me, a spouse of member with a chronic illness to say, “Fine?” I don’t know how much to open up. I mostly express gratitude for my husband’s positive attitude. I am grateful that he works out through the JCC Parkinson’s Program several times a week. He also goes to the chiropractor several times a week. He leans to one side a lot. He has other physical limitations. The disease bestows pscyho-social consequences which can be difficult for our family. He falls asleep a lot. There are other behavioral aspects, tied to the medication or disease or odd sleep habits.

The question is valid: how is he? My answer is also valid: I don’t know.

My husband has a progressive illness. His disease is progressing. He was diagnosed nine years ago. He is still amazingly capable of many daily tasks of living. And yet, there are many tasks that have fallen by the wayside.

I don’t always want to talk or write about it. I want to say (and people may want to hear), “Fine. He is fine. We are fine. Now, how are you? How’s your family?”

The truth is, if you answer me that you are not fine, that you have struggles too, and that life’s not always easy or what you bargained for, it’s okay with me. It’s okay if you are not always grateful.

In fact, admitting the struggle, and aiming for a semblance of resilience, somehow makes me feel better and makes me feel less alone. Because by asking me, How’s he doing? I think you know for our family, the disease is not always fine, easy, or inspiring. But it’s fine, one day at a time. It’s fine.