Family Update

I posted this info on CaringBridge today. That website is so helpful for staying informed on the health concerns of family and friends. So here’s the latest on my friend and family (and spouse) John Christopher Jones.

Chris has been struggling lately. He has lost a lot of his get up and go. This is the result of Parkinson’s (diagnosed in 2003) and shorter periods of the medicine kicking in and doing its thing.

We are taking some proactive steps. And looking in to some alternative living situations where he can get more care — one way we’ve done this is through hiring our beloved caregiver Loreeta to come and spend the night four or five nights a week for the last couple of weeks. She helps Chris up several times in the night so that we all can get a good night’s sleep. Hayden and I and any other child or friend who is around are all on duty at all other times to give him a lift or a push or adjustment or whatever’s required. While Chris still loves to shop and cook, his mobility needs are becoming very challenging.

We realized how challenging things were for Chris when he went for two weeks of respite care to the Will Rogers Home in Saranac Lake. Chris totally enjoyed the activities — hours of bridge and outings. He saw a moose! But Chris needed more help than an independent living location allowed — for example, he was calling to the front desk in the night for a hand up to get to the bathroom and this was a bit beyond the pay scale of the night clerk. So for the last few nights there, Chris hired a live-in helper.

Saranac Village, Will Rogers Home. Chris enjoyed happy hours on the porch and pool in the basement.

In any case, we’ve begun doing some due diligence back in NYC — researching places for more support. Chris would like to stay near New York as this is where his family, friends, church, career, life have been. We visited Woodland Pond in New Paltz where our friends live. But it seemed like a pricey investment and may not even have been viable due to Chris’s preexisting condition of advancing Parkinson’s — and again, he needs more help than independent living places offer.

Next week we’re looking at a residence on the Upper East Side. And Chris will be going for respite with his sister, generous and caring, in Florida in the coming weeks. We are blessed with loving families.

All this news and on a personal note, my wonderful father Edgar’s health is declining — his heart appears to be problematic and he has lost a lot of mobility as well.

So keep us all in your thoughts and prayers. The girls are entering their sophomore years. Catherine has returned to Kenyon College last week. She has a job in the film department and thinks that film might be her major. And Char heads off to Northwestern University as a transfer student — perhaps majoring in theater and computer science. Hayden had a great summer making beats and teaching at Horizons at St. David’s summer camp. He was an Italian and music major at Wesleyan and has begun looking for a job. We love watching our kids grow into young adults. They are and have always been our front and center — the heartbeat that we dance to.

One more side note: On this year’s Labor Day, I want to thank the unions that my husband is a part of — the SAG-AFTRA Union and Actors’ Equity. Our family gets our health insurance through SAG-AFTRA and it has always been a great comfort to have such a strong union supporting our family and, especially, Chris.

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Successful Aging and Your Brain (on Parkinson’s)

Last night Chris and I attended a fun JCC Parkinson’s Holiday Party. After rounds of singing and before the raffle, music therapist Barbara Yahr, and Parksinson’s docs Alessandro DiRocco and Rebecca Gilbert spoke about ways to successfully grow older with the disease.

Here are four take-aways — and these apply to everyone:
1. Get more social. Apathy is a real problem for people with Parkinson’s (and thus, their families), because the dopamine, the reward mechanism in the brain, dwindles. To combat this, make sure that you’re getting out and continuing to wire new neuron pathways through interesting conversations and activities. Change your routine. Don’t do what you’ve always done.
2. Eat well. Best foods for Parkinson’s? They really don’t know. Someone from the audience recommended non-inflammatory foods, but the doctors on the panel could not confirm that this was the optimal diet. There was some consensus that the Mediterranean Diet works well for everyone as we age.
3. Be active. What’s the best kind of exercise? The one that you do! If you have Parkinson’s, exercising for 45 minutes six days a week will likely stave off the steady decline.
4. Make a joyful noise. Music helps. Anecdotally, Yahr spoke about the magical powers of music — a way to communicate when speaking fails. And the docs emphasized that any way of making or participating in artistic endeavors — fine arts of performance arts — is good for the brain.

Caroline Kohles
Caroline Kohles: Chris always says she should receive a genius grant. One of the amazing JCC Parkinson’s teachers, Caroline sparks health through exercise and a growth mindset in her NIA class. (photo courtesy of NIANow.)

So, as the moderator of the panel and Chris’s great friend and brilliant teacher Caroline Kohles summed it all up: “Keep a beginners’ mind.”

Keep growing mentally because the brain, at any age, has neuroplasticity. Instead of a fixed mindset, a growth mindset, built on a foundation of persistence, hard work and optimism, provides maximum health benefits.

Creative Marriage

In writing class, when we read writers’ memoirs, we are all a bit like voyeurs. We like to see how others do it — how they get along with their partners.

It is always interesting, to me any way, to read about marriages. How much are the lovers’ lives, like vines, intertwined? Although I know the topic is tantalizing, my marriage is difficult for me to write about.

My daughter recently texted me this picture of me and Chris — I think it was from the premiere of M. Night Shyamalan’s The Village.

jcj and mbc

(Pictures are always fun when people are not looking at the camera.)

Let’s face it, I have always been a bit secretly jealous of Chris’s amazing acting career. It’s true I have my own IMDb page and when one of my students discovered this, he has begun greeting me as Sabrina Von Savage, my character’s name in We Might Be Superheroes. Alas, I never achieved the same status as an actor that my husband did. Men have it easier, even in film. And yes, if you say, in his defense, he’s a greater actor than most (including me), I will have to agree.

But still. I am not without my achievements. I did and do achieve greatness through my writing and, hopefully, through my teaching. These successes, however, are harder to quantify.

So back to marriage, that equal partnership. As I wrote yesterday, there is no greatness or genius without a team or a partner behind you. I have been able to expand myself because of Chris. (And, no doubt, I have limited myself too.)

Chris’s Parkinson’s Disease has slowed his ability to move. Diagnosed about 15 years ago, he needs more physical support than ever. He uses a walker or walking stick to get around. It can be taxing on me physically. Does he need more emotional and psychological support too? Maybe. Executive function skills? Yes, these are slipping.

And me? Yes, I need more help, but I am not good at asking for it. Or expressing my vulnerability. This is the lesson from the Dr. Blasey Ford — you tell your truth and you will be glossed over, or worse, ridiculed by the president.

Times are tough for women and for caregivers, who, let’s face it, are mostly middle-aged women, a slice of the population so easily dismissed. But I refuse to be written off. I refuse. I am, after all, a proud feminist and I do believe that I have a professional contribution to make to the world — in addition to, but not limited by, my caregiving for and with my family members.

On Monday, we are going to Chris’s neurologist, who, too, is named Dr. Ford. I am compiling a list of questions for the good man. We always ask about the trajectory of the illness — i.e., ‘if he is at this point, when will he slide to the next low point?’ The docs are always cagey in their replies. They don’t have crystal balls. They refuse to give up on anyone.

Well guess what? Neither do I. I am a member of the creative resistance. Je refus.

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light. – Dylan Thomas

Families with Parkinson’s Disease

people coverThere they are again. Staring at me as my nails dry at Susie’s Salon on 72nd Street. Michael J. Fox and Tracy Pollan on the cover of People magazine. I wish I didn’t resent their affection for one another and their airbrushed pictures of life with Parkinson’s.

Despite being married to an actor with Parkinson’s, I never felt our Coudal-Jones family and the Pollan-Fox family had all that much in common. They seem to have an ease with the disease. Maybe I am just jealous.

Maybe it’s the money. While Chris and I have done well financially, given that we are artists living in New York, we never had an endless stream of cash for the support of caregivers or chefs or whatever the heck very rich people spend their money on.

I don’t want to feel sorry for myself. For self pity is a hole I could fall into and never climb out of it. (Or to paraphrase Cheryl Strayed, ‘self pity is a street that you don’t want to park on.’) Let’s face it, Jones and Fox, like all people with Parkinson’s, have had different trajectories with the disease.

I feel compelled to emphasize the positive after reading this article (or any time really). Chris is going strong after his diagnosis 15 or 16 years ago. However, he is definitely slowing down. This makes me sad. There are times when he gets stuck and cannot move. Times when he shakes and cannot stop. There are times that he drools or hums incessantly. And God help me, I find some of these major physical shifts so disheartening. I am more impatient than Tracy Pollan. I try to stay positive.

The other thing I resent and again, God I wish I did not resent this, is the way that Tracy Pollan gave up her career. According to the recent article, Pollan was the bright one, the steady and hard working actor while Fox was the goofball. Why did she give up her work? Oh, to raise the children. Right. Right.

Well, I raised the children and I worked too. Sometimes, several jobs. And don’t get me wrong, I have always loved my work. My work has given me a purpose and a value, not to mention tuition money for the kids. Is it my feminism or my work ethic or simply my jealousy that wishes that Pollan would’ve been a film producer or continued to do her acting thing, too? She seems to have been a professional caregiver. (Not that there’s anything wrong with that.) Her work was unpaid, but likely, she continued to work hard. It’s hard work to make caregiving look this easy.

But back to my story. It does not have to synch and jibe with any other wife who has a husband with Parkinson’s. I do not have to be on the cover of People. I just have to be me. And Chris can be Chris. And our kids can be who they are. Likewise, the Pollan-Fox fam can be themselves. We all deal with it in our ways. And the one-day-at-a-time way of dealing with life never fails. Letting go of comparing ourselves with others also seems failproof. So I will let it go and find a way to gratitude.

Just one last wish: that for once, someone famous who is struggling with a chronic illness like Parkinson’s, would say is, “It ain’t always easy.” That’s it. I don’t need their family money or their love for one another (okay, well, maybe a little). And I must pause for a minute to admit here that I do appreciate their quest for a cure. They work hard on that. And they have leveraged their celebrity for a good — no, a great — cause.

Every so often, though, I long to hear, “We have struggled with this.” Okay, then give it a beat and continue, “But we’re still here. We’re still trying to make our best lives. We’re still going to work. We’re still trying to love one another and be loved.” Because, no one is perfect — not enough the smiling couple on the cover of the magazine — but we are all trying. And every family has its struggles and its stories. And every story could go deeper and everyone edits their lives for the sake of word count, print space or how they appear on social media.

Let me forgive Michael and Tracy a little and acknowledge, on behalf of all families with a chronic illness like Parkinson’s, “It ain’t always easy.” But thank you for continuing to show up.

Be real. Be loving. Be patient.

Self-pity is a dead-end road. You make the choice to drive down it. It’s up to you to decide to stay parked there or to turn around and drive out.

— Cheryl Strayed

A Message in a Bottle

Have been co-leader on a (write the love letter to your teenage daughter) life coaching call for three Saturday mornings over three weeks. It’s been wonderful to stop and look around.

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Char dancing at a dance concert at the end of year.

Sit for a minute on life’s journey to assess where you are and how far you’ve come.

Maybe like me, your June is a shifting kaleidoscope.

My son graduated from high school, got a job, wants to buy a car — all in less than a week.

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Mom and Me and an Act of God.

My mother came and went, visiting from Chicago. We walked and talked. She offered unasked-for advice. She also offered unasked-for love. We picnicked in Riverside Park, walked the High Line, wandered in Central Park, took in a Broadway Show (“An Act of God with Jim Parsons).

One of my 15-year old daughters set off for 12 days of kayaking in Alaska last night.

The other daughter came home at 1 am last night, causing me to worry with a heart attack. (She was repentant. Blamed the West Side Highway traffic!)

Chris gathered some of his friends from First Grade for a reunion dinner party at our house last night. It was lovely. When I first met Chris, I was deeply attracted to his friends and the way he loved them. Funny, isn’t it? This is such a lovable quality — having nice friends. But Chris is slowing down a lot. Because of his Parkinson’s, he seems older or frailer than his friends.

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We went to the Museum of Natural History. We went to see Nature’s Fury. And then, as usual, lay under the big blue whale. Meditation. Ah.

When? Why? How did we all grow older? Why did my kids grow up? I told them not to! I said Stay Little! They were the cutest little darlings. Does all this mean I am ageing too?

The life coaching call reminds me to embrace the memories; celebrate the moment; choose joy; stay true; stay present. We make mistakes; we make amends. We hang in there. We have a family motto, “Jones Kids never give up.”

In the midst of my busy family life, the life coaching call is a breath — a slowing down — to take it in. Celebrate this moment. We have so much. Gratitude wins. Love wins.

I jot down my thoughts and dreams and hopes for my family. I send them like messages in a bottle. Hope they reach the shore. Hope my daughters and son (husband, mother, extended family, friends) know I love them. Believe that love is enough.

PS Remember to join me at the Irish American Bar Association’s Bloomsday June 16th! Another busy week. But this one will be less family-centered and more friends, work, writing-centered. Thank God.

Am also getting psyched for my trip in July to Ireland with the Dublin Writers Retreat.

 

Status Update

So this week the kids went back to school. This is always a bittersweet time and a time to take stock. Here’s what’s going on.

My kids.

My son is in his last year of high school. All these years I’ve pulled him close and now I’m pushing him out of the nest. But his newly found independence comes with my hope that he make wise choices — around alcohol, relationships. I worry. So far, he’s been pretty good at keeping his midnight curfew on Saturday nights. My girls, too, are finding new friends, new activities, new ways of being in the world without me holding their hands. Though I still love to hold their hands.

My kids are my alpha and my omega. They are why I wake up in the morning. Them and coffee.

My writing.

I finished my novel and sent it to an agent and to Kindle singles. I think I may have to send it to more than one agent and one publisher. 😉 I like it. I think it’s breezy and fun. I say it’s like Breaking Bad for the suburban mom. People in my writing workshops who have read bits and pieces like it too.

bar on the corner
2A on the corner of Avenue A and 2nd Street. I’m reading Mon., 9/8/14 — show starts 8:15 ish.

I am psyched to be invited to read at a fun venue tomorrow night, Monday. And I do think my funny, short essays are the pieces that I can sell most easily and people love best.

My small biz.

I have a crazy patchwork quilt of work. But my most important and steady work is my writing, web and social media work for SPSARV. I love Juliana, Art, Christie and Rhina so so much. In every gratitude list, I include SPSARV because I am so crazy lucky to work with such super smart and super nice people. They are my mainstay.

My biz teaching writing workshops is on hiatus — I have hosted dozens of awesome weekends, meetups, and classes over the last two years. And been a guest speaker at a bunch of conferences. I know it takes three years to get a business going. The things is: I’m just barely breaking even at Boot Camp for Writers. Maybe it’s the cost of renting space that’s killing me.

I’ve gotten other teaching work steadily. I have been tutoring and teaching 12th graders for college applications. Next week I start teaching a creative writing and reading class for first and second graders. So excited. And, on occasion, I still help with videography for Columbia University and corporate trainings.

My marriage.

I don’t know what to say. It’s not easy. I love my husband. It’s no secret that chronic illness throws a wet blanket over the romance. And maybe after 19 years and 3 kids, no marriage is lovey dovey, flowers, candy and joy joy joy.

Still. Chris and I are best friends. We go to a lot of movies and theater together. We love our family dinners, card games and conversations about the kids. But he has been thoroughly obsessed with his new translation of Turgenev’s A Month in the Country which will open in January ’15 at the Classic Stage Company. (The cast will include — name dropping alert — Peter Dinklage and Taylor Schilling.)

I cannot begin to say how important and meaningful life is for my husband because of his amazing talent and creativity. And steadiness. Despite his limitations (read Parkinson’s Disease), he still makes a huge contribution to the theater community.

My fine art.

I have not been making short films or fine art lately. I may go back to my collage class at Art Students League. I love getting my fingers dirty with paint.

My spiritual life.

At times, I doubt God exists. The randomness of illness and war is just too senseless. I try to act as if. I try to believe that I am not alone. I am a part of a bigger picture.

But I have big questions, Why Gaza? Why Ferguson? Why the beheadings of journalists? We are all humans. We would love each other if we sat down and shared a meal together. Instead, we’re bombing the shit out of each other. It’s too much.

I’m so sick of our countries spending billions to guard borders. I believe in social justice, the kind I’ve learned about in places like the United Methodist Church. We have to build bridges, not walls. We have to open doors of understanding. We have to talk less and listen more.

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.)

endgame
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.