Archives for posts with tag: Parkinson’s Disease
« Older Entries

On the 5 Boro Bike tour

May 5, 2013 //
3

I learned when you suffer, you suffer alone. Right towards the end of the 40-mile bike tour, you hit the Verrazzano Bridge, (the second longest suspension bridge in the world). The incline goes on for-ev-er! You just keep climbing and you think, “Surely, this is some kind of illusion. How can something just keep going up?” You cannot answer that voice in your head, because you just have to keep pedaling and keep suffering.

There were many people walking their bikes up the eternal incline. But not me, because we borrowed our awesome friends’ road bikes and my bike had a will of its own and the wheels just kept turning.

But during those grueling moments of riding uphill, that’s when I thought, “I’m suffering alone.” Surrounded by 30,000 other riders, still, I felt alone. Suffering makes you feel all alone. As if you will never reach the top. Fortunately, my son waited for me some ways ahead. I was not alone.

The coast down was pretty sweet. And we did it very fast together, whizzing by the signs the volunteers held that said, “Slow down!”

We enjoyed the finish and the festival and the ferry ride from Staten Island.

20130505-204735.jpg

That’s me and Hayden when we were returning to Manhattan from the ferry. This was taken only a few minutes before Hayden fell asleep like the rider behind us.

20130505-204802.jpg

We were still pretty chipper at the Queensboro Bridge.

20130505-204815.jpg

At the Brooklyn Rest stop. So nice!

20130505-204835.jpg

I discovered it’s hard to take a pic while bike riding.

20130505-204851.jpg

Thanks, Dara and David, for letting us borrow these sweet rides!

20130505-204932.jpg

Waiting to board the ferry

20130505-204950.jpg

We liked getting all the free samples at the rest stops. I especially enjoyed the sample grilled cheese. And Hayden liked the Red Bull.

20130505-205004.jpg

There’s no place prettier to bike than Central Park.

I did the 5 Boro Bike Tour in 2011 too. I didn’t do it last year because I didn’t sign up in time, even though I was going to join the Team Fox and raise money for Parkinson’s Research.

Next time I do the bike tour, I have to remind myself not to suffer. I have to remember that eventually the path will lead downhill.

I would like to write more about the bike tour, but, honestly, I’m ex-haust-ed. I have to go to sleep.

other cool posts: DIY cycling

bike new york

Tags , , , , , , , , , , , , , , , ,
Categories biking, Fitness, New York Story, parenting

I Get Social Media

April 1, 2013 //
2

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.

Related articles

20130401-102315.jpg

20130401-102332.jpg

20130401-102408.jpg

20130401-102505.jpg

Tags , , , , , , , , , , , , , , , , , ,
Categories biking, Caregiving, happiness, Nature, parenting, Rules To Live By, Uncategorized

In the Slow Lane

February 4, 2013 //
0

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.

Tags , , , , , , , , , , , , ,
Categories Caregiving, creativity, Fitness, happiness

Child Health Care Plus

December 20, 2012 //
0

Yesterday I posted on Facebook:

putting together paperwork for the kids to get on Child Health Care Plus, NY State health insurance — forms are so lengthy, so complicated! It’s confusing for the two of us, both with advanced degrees. How do people do this?

A few friends suggested I blog  about the experience. I would kind of first like to see if we got approved, before I offer any summary of my experience. It’s not unthinkable that I messed up something. But until I hear if all of the paperwork’s in, let me  tell you: The application is 17 pages long!

There were opportunities on the application to provide more than was asked for. For example, if your child has no Social Security number, you have to provide proof of residency. Or maybe you needed to provide proof of New York State residency any way. Being the overachiever that I am, my instinct was to throw everything at them for fear of not providing enough. I provided a utility bill as proof.

I did call the number on the application to get clarification on another question. No one answered the call after 25 minutes on hold and a promise of  ”a customer service representative will be with you in a moment.” I tried another number and got to ask my question.

Could I walk the application in somewhere to get it in by the 20th of the month (today)? (The 20th is the cut off date to provide coverage on the 1st.) No, it turns out, I had to overnight the application to Albany. I dreaded going to the post office less than a week before Christmas, but I used the automated machine. It was fast and easy.

child_health_plusThere are agencies and communities centers listed on the application where one could turn for help. But, rugged and proud individualist that I am, I thought I should be able to handle the paperwork on my own. Besides, I have a Master’s degree, how hard could it be? Hard.

The good news is that the cost, if all goes well, will be about $45 per child per month. This is wonderful and much more affordable than the $1,700 or so that COBRA would cost to cover the family. We would only need this Child Health Care Plus coverage for a couple of months until my small business gets off the ground and one of Chris’s  unions, Screen Actor’s Guild, kicks in for the family.

My husband Chris is on disability because of his Parkinson’s Disease and he is covered with Medicare, so that just leaves me. I have no health insurance for a couple of months.

On Tuesday, one of my creative writing middle school students got close to say, “Look! I have Pink Eye.”

“Hey,” I felt like saying, “Stay away from me if you are sick. But just for a couple of months.” Now, I’m wondering if my eye’s looking a little red. Yes, so it begins, two months of hypochondria until I get back on a family health insurance plan. Let’s hope I got the kids on their plan.

Related articles
Tags , , , , , , , , , ,
Categories Uncategorized

My Mom, My Worries, My Optimism

December 14, 2012 //
0

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
Tags , , , , , , , , , , , , , ,
Categories creativity, Nature, parenting, Rules To Live By, Uncategorized

Daily Prompt: Time Capsule

December 11, 2012 //
5

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.

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

Want to Run Away?

November 17, 2012 //
0

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!

Tags , , , , , , , , , , , , , ,
Categories creativity, happiness, parenting, running

How’s Parkinson’s? It’s fine.

November 12, 2012 //
0
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.

Tags , , , , , , , , , , , , ,
Categories Caregiving, Rules To Live By, Writing

Getting Quiet and Slowing Down

November 5, 2012 //
1

Leaves of Grass. Boston: Thayer and Eldridge, ...

Leaves of Grass. Boston: Thayer and Eldridge, year 85 of the States. [1860-61] page. Creator: Whitman, Walt, 1819-1892 — Author. (Photo credit: Wikipedia)

On the Adirondack writing weekend, we walked along the shore of Lake Champlain. For most of the way, we chatted. I love words and filling my world with words.

Honestly, I can speak or write extemporaneously on any given topic. Yes, I’m a know-it-all (and I come from a long line of know-it-alls, of which we are proud!)

For three days in the Adirondacks, I did yoga with Michelle Maron (Lake Champlain Yoga Arts @ Live Well). Now back in the city and with the kids back to school, I’m doing guided meditation in the mornings. I’m finding benefits to being still, keeping quiet.

I LOVE Walt Whitman’s Leaves of Grass.

“Failing to fetch me at first keep encouraged,

We stopped and waited and listened.

Missing me one place search another, I stop somewhere waiting for you.”

I first discovered the joys of Walt Whitman and in overstimulation in college when one of my friends liked to study, watch TV, blast the radio at the same time. I tried it back then and found I liked it too. I found it relaxing. I liked cacophony.

I like the adrenaline of rushing, so New York City’s energy is perfect for me. But so is the quiet of the country.

In light of my husband’s gradual slowing from Parkinson’s Disease (he was diagnosed nine years ago), I know I must, regularly, slow and quiet myself and the kids down too. Chris needs to take more time. He stands frozen. He cannot respond quickly to a question.

Walking in the Adirondacks.

In those instances, words don’t matter but slowing down does. Stopping to wait matters.

As we walked in the Adirondacks, the other writers and I stopped talking for a little bit. We said nothing.

When I wasn’t talking, I could listen. I could hear our footsteps, our breathing, a bird on the lake. I could hear a breeze through the leaves of grass.

Related articles
Tags , , , , , , , , , , , ,
Categories Uncategorized

10 Thing That Make Me Happy

September 8, 2012 //
0
  1. Helping a friend with a big event. I’m doing flowers for Barbara’s wedding! And I can’t wait for a highlight of my life — dancing at weddings.
  2. A bike basket. I have had half a dozen bikes in my adult life in New York City. This is the first time I have had a basket. Super cute and convenient.
  3. Riverside Park garden at about 91st. How gorgeous is this. Even in this heavy humidity as I glide on my bike past the flowers, I am weighed down with the tropical smell and the riot of colors. I am transported into some version of heaven.
  4. Brilliant colleagues. I have had intellectual and creative coworkers. The best thing about my work is joking with my coworkers.
  5. A book club. We are hilarious. We travel together for one weekend every year and after that weekend, my jaw hurts from talking and laughing so much.
  6. Kids! Mine are smart, gorgeous, athletic, and basically kind. Even when they bicker and snipe, somewhere deep down, they are whispering, “I love you,” to each other. (I tell myself this.)
  7. A biz partner. Kelly Wallace is supersmart and talented. We are tapping into possibilities of a new kind of writing collective and getting unheard voices into the mainstream. Check out our website at Boot Camp for Writers
  8. Small kindnesses. Holding a door for someone or accepting the gift as someone holds a door for me.
  9. Resilience and New York theater. Last night my husband and I had a date night. We saw “Red Dog Howls” at New York Theatre Workshop and then we had dinner at the Frenchy French restaurant Calliope. Chris had real physical challenges during our meal. These were obvious as he struggled with his forkful (I hate Parkinson’s Disease!) Still, we had a night out. He never complained. I admire his resilience. (The play was a tough one – reminded me of the horrors endured by civilians as one character describes the effects of war on Armenians.)
  10. A washer and dryer. When I got these in our New York City apartment, I swore I would never want for anything, ever again. So I am grateful for my appliances.
Tags , , , , , , , ,
Categories Rules To Live By
« Older Entries
Follow

Get every new post delivered to your Inbox.

Join 2,979 other followers