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

Memories of Meeting Chris

May 29, 2012 //
0

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.

Tags , , , , ,
Categories Uncategorized

Happy-Go-Lucky? Good enough!

April 10, 2012 //
1

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.

Tags , , , , ,
Categories Caregiving

Driving with Parkinson’s Disease

April 9, 2012 //
7

Our first day of vacay, when I’d 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 eight or 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 was a serious accident and I had 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.

And 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).

Tags , , , , , ,
Categories Caregiving, marriage

worry is contagious — so is hope

October 20, 2011 //
0

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.

Tags , , , , , , , , ,
Categories Christianity, Parenting Tweens, Rules To Live By

Getting Help

October 10, 2011 //
1

No one does it alone. No one.

I am terrible at getting help. So bad. I would much rather be the help than the helped. Having a husband with Parkinson’s Disease, I find his ability to help is diminishing. Of course he still pitches in and cooks dinner, but the quality of his work and the time it takes to get things done is very frustrating. For me. I need help.

On the flight home from Florida, I began to compose a letter to some church friends asking for their help with my darlings while I am going to be away for a few days for a worktrip to New Mexico. But then the plane hit turbulence and I put my laptop away. I have not opened that file. A part of me felt ashamed that I needed help.

In a city and a country of rugged individualists, I felt stupid and weak for asking for parenting and family support.

However, a few recent events in my life and in the world have reminded me that human beings need one another. We are social animals who like to live and work in community. It takes a village. We all need help – coping with an ill spouse, raising children, writing a book, organizing a demonstration or running a marathon. Here are some examples:

1. Occupy Wall Street — if you demonstrate alone, you look crazy. If you demonstrate with thousands of other people, you look like you have a cause.

2. NaNoWriMo — even the loneliness of novel writing can be ameliorated by thousands of on-line and real life friends cheering one another on. Creating small daily goals adds up to big accomplishments.

3. My Daughter’s Soccer Team — it’s much more fun to celebrate a win in a group than to win alone.

This weekend I saw this performance art piece at the foot of the High Line. The women were cutting each other's hair.

4. Haircuts — they just look better when someone else does them. In the same way, you can’t set your own broken arm.

5. My Family’s Well Being — I’ve met with a former colleague who started her own eldercare business and is helping us with Chris’s caretaking and I’ve also met with a lawyer to learn about protecting our family assets. These were huge and difficult calls to make and conversations to have. There’s more work to be done, but it’s a start.

Someday I may get back to writing that letter to my church friends to see if anyone wants to watch Charlotte’s soccer game or share a meal or prod the children to homework while I’m away. But I hesitate to finish and send the letter.

What if no one can help? Then I will end up exactly where I am. And it’s not such a bad place to be.

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

Teaching Children Responsibility

July 8, 2011 //
0

Six years ago, I borrowed a book from my daughters’ preschool. The book was called Teaching Your Children Responsibility. I don’t remember any advice from the book. All I know is that I never returned the book to the preschool lending library.

I have felt guilty about not returning that book for six years. I try to model responsibility and consistency. Sometimes I model guilt and blame.

For the mess in our apartment I like to blame my husband Chris and his Parkinson’s Disease and my children who have no good excuse. And of course I blame myself because I don’t discipline them enough and I would rather write before work and play tennis after work than clean and do laundry. I would rather go out to Happy Hour with my work peeps than make a family dinner. How often have I said, “Let’s order Chinese food again, kids”?

I may be irresponsible but I am happy. I may be guilty but I am keeping the Cottage, the best Chinese restaurant on the Upper West Side in business.

I may be messy, but I am creative. This is what I tell myself. In our country house there is a magnet on the fridge. It says, “A creative mind is seldom tidy.” So true.

This jibes with my Rule Number 5: Expect the best, love what you get. Even from yourself.

Someday I’ll return that library book. Until then, I’ll try loving myself.

Tags , , , , , , , , , , ,
Categories Rules To Live By

Stronger in the Broken Places

June 19, 2011 //
4

Chris loves to watch the kids play sports, especially Hayden on the Little League field. He loves to teach them cards.

The Parkinson’s Disease makes some typical Dad things difficult, but he does them any way. He never says, “I can’t.”

He loves to cook, and he is a slow cooker.

His ability to show his love is slow too. He can’t help it.

Can any of us help who we are or what we get? I try to remember this when my husband falls asleep when I’m talking to him or walks away in the middle of a conversation. He leaves a mess worse than Linus in his wake. He refuses to leave his computer chums for real-life friends.

I try to remember who Chris used to be. I try to remember the quick flick of his wrist on the tennis court, the persistent phone calls to place our kids into pre-school, the lover of literature, the smooth dancer at the Broadway show’s after-party. He is still all of these things, but they are slower to show themselves.

I lean on and love other dads too. They might not even know how much I need them — my kids’ uncles, grandpa, friends. I lean on these father figures so my kids get the attention, love, support they need.

Fathering (and parenting) takes a village. Sometimes I feel I should do it all alone. Or I feel that that there is only this one person or one way to be a family. Or I feel I shouldn’t reveal our/my weaknesses.

But we are stronger in our broken places (I think that’s a book title). The shoulder bone Hayden broke when playing baseball is stronger at the point of its break, which happened to be the growth plate.

When we lean on one another, we are stronger. We reinforce the growth plate.

By remembering why we love someone and getting over the frustration of that challenge (if possible), there is an ease and a deep gratitude. And if that doesn’t work, there’s always anti-depressants.

I’d like to write more about this but I have to go and make a Father’s Day breakfast. I have to call my own father and say, Thank you!

Tags , , , , , , , , , , ,
Categories Rules To Live By

Everything’s Fine

June 12, 2011 //
0

Putting this spin on my life is exhausting. I was thinking about this as I scanned the Michael J. Fox article and looked at his photo on the cover of Good Housekeeping when getting my nails done yesterday.

Sometimes it’s not fine. Sometimes I want to go, “Bad deal. Need a do over. Not happy. Nope. Not working out here.”

I feel pressure — from Michael J. Fox? — to make the difficult seem easy and the abnormal seem normal. So what if my husband has Parkinson’s Disease? I should just grin and bear it (as Tracy Pollan seems to do. You don’t hear her saying, “It’s tough living with this dude who has Parkinson’s Disease.”)

Look, Michael J. Fox is an amazing person doing amazing stuff but not every person with Parkinson’s can perform at his level. Perhaps Fox’s nobility and engagement in life (and his more abundant resources of physical therapy and money and access?) make me and other families with Parkinson’s feel a failure. Sometimes, the disease actually kicks your butt and you are not happy and smiling and ready for the cover shot. You are not always looking up.

Occasionally someone will say to me, “I don’t know how you do it. He would drive me crazy.” And for that I say, “Thank you!” Because the people who say, “He looks great. Can’t even tell there’s anything wrong.” make me feel bad, like I shouldn’t notice his crazy behavior or at times embarrassing demeanor. And to those of you who are right now saying in your head, ‘Mary Beth, it’s worse for him.’ Yes, you’re  right. And I know that. And I’m sorry and I feel sad about that. I try for compassion on a daily, hourly, momentary basis. But this is my blog and my truth.

How positive should I be? How much is my positive attitude denial? How optimistic can any caregiver be? How encouraging should we be when faced with a disease in the family? And can we acknowledge in all honesty that times can be difficult?

And of course times can be great. And I look for and find joy. I try to follow my own rules to live by and find a deeper meaning to my life.

I do have a lot of gratitude for the people in my life, especially for my husband. That doesn’t mean that I don’t have a lot of frustration too. It’s a dance of honesty, encouragement and denial. And to all of this I say to Michael J. Fox’s smiling face on the cover of the magazine, “Everything’s fine, except when its’ not. I’m always looking up, except at times, when I look down. And life is made of moments of happiness and sadness; health and illness. It’s all part of the fabric of this life.”

Tags , , , , , , , , ,
Categories New York Stories, Publishing, Rules To Live By

3 Simple Rules

June 2, 2011 //
3

When I used to do stand up, I would tell myself 3 things right before I went on stage:

1. Be yourself

2. Have fun

3. It’s important

And I am trying to tell myself these same 3 rules at the start of every day.

I did not sleep well last night. One of the darlings came into bed with me at around 2. She’s nearly as big as an adult so she woke me. We have no air conditioning. It was  hot. I tossed and turned. Then I  moved to my daughter’s now-empty bed. I’d heard an antidote to insomnia is changing rooms.

As I walked in the hall, I heard the television was still on. My husband stays up way too late into the night, sometimes until 3 or 4. Then of course he falls asleep in the early evening hours when you’re talking to him (blame the Parkinson’s). Hearing the television just made me feel all sad and jumbled — my life, my restless night, my work. And I couldn’t wait until morning so I could dump all my thoughts, worries, dreams, into my journal.

1. Be yourself. Because there is a unique point of view based on a unique life’s journey. And for whatever reason, this is my journey. This is mine.

2. Have fun. Because I seriously believe that we are put on this earth to give and experience joy. The goal in life is to be happy, joyous, and free.

3. It’s important. Because I can easily dismiss my point of view, or expect that I am less than. But what I have to say is important.

I did fall asleep in my daughter’s bed and woke to write all this in my journal.

Tags , , , , , , , , , , , , ,
Categories Rules To Live By

Everyone Drives Me Crazy

June 1, 2011 //
1

It could be the heat today. But everyone is so annoying! At work my colleagues expect all my work to be done last week. At home my kids yell at me to help them with homework. Genius takes time, my friends. You can’t expect a unicorn to work like a mule. Maybe I am just crabby.

I blame it on my husband’s Parkinson’s Disease. I blame everything on his PD.

And there is one other thing — one huge contribution to today’s overall sucky-ness. (If you know me, you know I’m rarely in this sucky camp. I’m usually in the glass-is-half-full camp. I stay happy because I have made up and followed my 7 Rules to Happiness and they usually work! But not today.)

Today’s pity party reached a crescendo when after racing my bike to get to one of my darling’s appointments at the orthodontist, I discovered I’d have  to cough up $295 dollars to replace each of my darling’s two lost retainers. That’s right. A set of lost retainers will set me back $590.

After the trip to the orthodontist I consoled myselt that when I got home, at least the house would be clean. See, Chris is extremely messy (blame the PD) (and admittedly, I’m no Felix Unger myself), but Wednesday nights are usually the one night when I don’t have to kick the house into some semblance of order when I get home from work. Because A., the cleaning person, works magic in our apartment on Wednesdays.

I was thinking ‘Tonite, the house will be clean and I will make myself some jewelry.’ I’d biked to the craft store and bought some beads. I like to be crafty. It’s calming, fun, productive. But A. couldn’t make it today. So I spent the night, cooking, cleaning, being generally pissed off. I didn’t make any jewelry. I just helped with homework and cleaned the kitchen.

Okay, I can’t end this post without admitting to a few highlights of my day too: Laying on the grass at Barnard with Liz at lunchtime and reading the kids Deenie  by Judy Blume for our Mother-Daughter book club before they went to sleep.

Tomorrow’s another day. I doubt it will suck. I will try to be grateful and I will try to be happy.

Tags , , , , , , , , , , ,
Categories Rules To Live By
« Older Entries
Follow

Get every new post delivered to your Inbox.

Join 1,070 other followers