Tag: Health

A Little More

Published on by mbcoudalLeave a comment

Last night we saw A Little More Than You Wanted To Spend, a funny, sad one-man show with and by Chris Clavelli about the death of his 6-year old son Jess.

clavelliThis sucks. I mean the play is awesome, but the show reminds you that life sucks.

Life is a total crap shoot. You get shit. You get joy. You live. You die. Other people live and die too.

You have to talk about it. You have to write about it. You have to tell about it. You have to live it. You have to make something, maybe theater, out of it.

The sucky part, sometimes, is living on and getting up when you feel like curling up in bed and not getting up.

***

Taking the garbage out last night with my daughter Charlotte, one of our neighbors, a former Hollywood starlet from the 1950s (and this is not even giving her away because we have several senior actresses in our building), asked me, “How’s your boyfriend?” or something like that.

Charlotte looked at me quizzically.

“He’s doing good,” I said, about my husband. “He’s got a great creative spirit. Is directing a show upstate this summer.

The former starlet said, “He’s wonderful. He’s got a twinkle in his eye and great artistry despite the tragedy of his life.”

We said good bye at the recycling bin.

“What did she say?” Charlotte asked. “The what of his life?”

“The tragedy. I suppose, she meant the tragedy of his Parkinson’s diagnosis,” I told my daughter.

I don’t think of my husband Chris’s life as a tragedy.

This is not the first time a neighbor has used stark terms to refer to my husband’s disease in front of my kids. I guess, in the dailiness of life, the reality of Chris’s illness is not a tragedy, it’s normal.

It is not always a comedy, but tragedy? I don’t know.  Chris feels he is lucky. He feels there are worse diagnoses.

***

This is the second time I’ve seen Clavelli’s play. It’s blown me away. Made me laugh and cry.

I am friends with Clavelli, and his girlfriend Leonisa, who funnily enough, was my work out buddy at my former workplace, before she and Clavelli got together.

The play reminded me to hug my darlings, to love the people in my life, to laugh and cry with them, to talk about truths, to listen to other people’s truths, to make art.

When someone tells their truth, I can’t argue or judge. Hearing someone’s truth makes me want to tell my truth. Because, I know, making art is a way of healing.

Life is a tragic-comedy.

***

Any way, go see Clavelli’s show. It’s really good. It’s only running in June in NYC.

Related stories

Chris Clavelli

A Little More Than You Wanted To Spend

Beauty in Tragedy, The Poem (writingsofamrs.wordpress.com)

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

Published on by mbcoudalLeave a comment

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.

20130204-113917.jpg
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.

My Mom, My Worries, My Optimism

Published on by mbcoudalLeave a comment

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:

20121214-101856.jpg
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

Fun with Colonoscopy

Published on by mbcoudal1 Comment

What better way to celebrate a rough week than to get a colonoscopy?

No one wants to get their colon checked. But my wonderful primary care doctor, Dr. Etta Frankel, told me that I’d hit the age where I needed to. Besides, I’m losing my health insurance in a couple of weeks and wanted to get all my preventative care procedures done. Nothing like the thought of impending doom to get your house in order.

In early November, I got a postponement on my first colonoscopy due to Hurricane Sandy’s reshuffling of patients in New York City hospitals. All elective-type surgeries were canceled or rescheduled that week.

Happily, no NYC hurricane hit this week. Although the concoction I had to drink the night before the procedure worked like a Hurricane Sandy on my digestive track.

Here’s my recipe:

  • 2 bottles of coconut vitamin water
  • 2 bottles of green gatorade
  • one whole container of MiraLax

I mixed my concoction in a pitcher and in under two hours, I finished it. (Much like the 5K!)

a book that helped me through the night before my procedure, The Cookbook Collector: A Novel by Allegra Goodman
a book that helped me through the night before my procedure, The Cookbook Collector: A Novel by Allegra Goodman

Everyone warned me, and so I was prepared, that this was hardest part of the colonoscopy — the drinking of the concoction. That, and the endless time in the bathroom to clean your bowels. To get through the evening, I reminded myself  that, “If I can run a 5K without stopping, I can drink 64 ounces of some sugary mix and spend an evening on the toilet.”

Also, I had a good book, Allegra Goodman’s Cookbook Collector, to keep me company.

The night of my internal storm in the bathroom, my son was very caring. Holed up in the bathroom for hours, occasionally, there’d be a gentle knock on the door, “You okay in there, Mom?” I truly loved that kid then. (I know I’ve complained about my kids on this blog, but they are basically kind and wonderful souls.)

Earlier that day, I’d fasted, which made me very crabby. (Yes, this is where the kids get their low-blood sugar crabbiness!)

The procedure itself was not a breeze. Everyone told me, “It’s the easiest part.” But I remember twice, half in a twilight sleep, coming to, in order to complain, “That hurts!” It felt like someone was poking me internally with a pool stick. Irksome, but not deadly.

Also, last night, the night of the procedure, I was very crabby. I felt my husband was not solicitous enough. Yes, he has his own health concerns. And yes, when he did ask, I told him, “I’m fine.” But when will a man realize that when a woman say, “I’m fine,” the day of a surgical procedure, what she really means is, “Please baby me the way I baby you when you’re sick! Bring me soup in bed and say, ‘Poor baby! Good that you’re taking care of your health!'”?

So, to reward myself for taking care of myself and surviving the storm of a colonoscopy, I went to a fun, girls’ night out, a jewelry sale to benefit a public high school. I bought some pretty little earrings. I giggled and had deep discussions with my girlfriends. That indulgence made the whole crappy week and day of the colonoscopy a little brighter.

Related articles

Want to Run Away?

Published on by mbcoudalLeave a comment

One day last year I took out the garbage and wanted to just keep going. I thought I was not made for this mountain of housework and life with a chronically ill husband. How can a unicorn be expected to work like a mule? (to paraphrase a folk song.)

I wanted to run away, because my life was more than I bargained for. (Yes, I know, there are many people, perhaps the majority of the world, with problems far worse than mine, so if you’re thinking, why should she complain? You’re right. Most days I have gratitude up the wazoo. But this is my blog and others can chronicle their challenges and joys on their blogs. And I will read them and like them and understand. So, do not judge.)

What saves me from flying away and keeps me tethered to the homefront is my three awesome teen kids and my unbelievable network of friends. I don’t know how people have a chronically ill spouse without energetic kids and lovely friends to distract them from the loss and grief in this shifting sand marriage. Here are other things that keep me going:

  • Art: making art and appreciating art
  • Travel
  • Having parties
  • My biz, Boot Camp For Writers
  • My church community
  • Working out
Anne Tyler’s novels are so good!

I imagine every mother and wife has these days when she wants to run away. A while ago, I read this novel, Ladder of Years by the genius Anne Tyler. A middle-aged mom disappears from the beach and starts a new life in a little town as a secretary. I think of that character and how lonely (yet delicious) she found her life alone.

When my friend, J. and I went running this morning, we talked about this — how happiness requires work. It is not easy. It is not a given. But we are compelled to find happiness, despite life’s challenges. Among reasons to find joy, I find happiness in contemporary literature.

Novels save me. They allow me to escape. I can run away, but still be back in time to take out the garbage. Joy!

How’s Parkinson’s? It’s fine.

Published on by mbcoudalLeave a comment
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.

Driving with Parkinson’s Disease

Published on by mbcoudal7 Comments

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.

Related articles
Enhanced by Zemanta