Wanted: Help

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.

20130914-091306.jpg
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.

In the Slow Lane

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.

How’s Parkinson’s? It’s fine.

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.