Book Club: Inheritance Part 2

It’s just been so much fun to dive into these books with you. Here are the two writing prompts I came up with from the second half of Inheritance by Dani Shapiro:

  1. Are there things we know, subconsciously, before we know them? Why do we put of pursuing the truth or acknowledging what’s happened?

  2. If we are striving for understanding and healing, maybe we must revisit our stories time and again. What story of your needs revisiting?

I’m teaching a new, free class next week. It’ll be different than these Facebook live videos - I’ll have slides (ooh la la), be a tad more organized, and I created a beautiful workbook to go along with the class. If you can’t attend live you can sign up to get the replay. Get all the details and sign up: https://www.orchidstory.com/

Gratitude

This one’s for my sister.


Every inch of my body screamed, "I can't do this again. I need to leave. I can’t handle One. More. Moment.” I felt agitation running through my veins, anxiety rising in my chest. Resentment and anger came bubbling up as I thought of all the families sitting down to their Thanksgiving dinners while I found myself in a room alone with my mom, inside of the assisted living facility we had moved her into two weeks prior. She was downright refusing to get dressed and come with me to join the rest of our family for the meal. Or maybe it was her disease, the PCA, that was refusing to come.

I took a step back and tried to breathe to stop myself from yelling. I wanted to yell all the time, at anything and anyone. At the squirrels who got in my way on the sidewalk, at the aide who should’ve had my mom dressed already, at my kids to put their shoes on. In that moment I wanted to yell at my mom. Then my sister, Dani. “It isn’t fair that you get healthy grandparents”, I would scream. “You get to leave for the holiday and go on date nights with free babysitters and have someone cook for you while here I am, stuck in this room.”

The thing was, I really couldn’t convince my mom to come with me. While I was seeing red inside of my reptilian fight or flight brain, I knew enough to know that I was not mentally in a place where I was going to be able to connect with my mom, get on her level, empathize. Get her dressed so I could be with the rest of my family who were already together, waiting on us. So I called Dani.

Isn’t this what we do as siblings? I would do this to no one else on earth (well, except maybe my husband - sorry babe). I’m so resentful in this moment, I’m letting my emotions get the best of me by attacking my sister in my mind, I know she already feels horribly guilty about leaving me alone to deal with the situation, and I decide to call her?

And, you know what? She answered.

Thinking back on it now, I have tears in my eyes. Tears of deep gratitude for Dani. Put yourself in her shoes for a moment. After months of crisis, I mean crisis every damn day for weeks on end where you are pulled from meetings at work and bedtime with the kids to take care of our mom. Off to the neurologist, the psychiatrist, the ENT. Off to the emergency room. Off to a meeting you’ve been called to with the director of the facility. It is only us. Her and I. We moved her here away from her village and so it is us and only us who are responsible. Dani has finally gotten an opportunity to take a moment to breathe. A few days where she can be with her two little kids and focus on them with her full attention because she knows that even if she gets called she can’t physically come. It’s a huge weight lifted for a few precious days. And I evidently wanted to sabotage it for her.

Not only did she answer the phone, but she answered it free of hostility, even though she had to know it was an SOS call from me before she picked up. We had been answering each other’s calls with, “What happened?” for the past two months. But on Thanksgiving she sounded happy and peaceful when she said hello. Immediately upon hearing her voice I started to relax. I put her on speaker and she spoke to our mom in the way that I wasn’t able. She soothed and listened and comforted. After we hung up, I got mom dressed and off we went. 

For years people have told me, “It’s good that you have your sister.” For a long time, I wanted to respond by saying that having a sister doesn’t make the pain go away, you know. It’s still the hardest thing I’ve ever faced. “You’re reminding me of my sister because you want to create distance between yourself and this hardship I’m in; it’s easier to sugarcoat it with my sister rather than acknowledge the pain, isn’t it?” I wanted to say.

This year though, a deeper level of gratitude than I have ever felt before, came into my life. We have walked through the hardest days together, Dani and I. Facing the depth of this disease together, the stripping away of the woman we both love dearly has bound us together in the most beautiful way. We have chosen, time and again, not to scream at each other. Not to take our pain out on each other. But to support. To be the other person’s person. To love.

Now when people tell me how lucky I am to have my sister I close my eyes and say a prayer. Thank you for Dani. Please keep her safe. Please protect her energy and bring her peace.

Four Seasons (and Reasons) of Boston

 
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At the end of 2017 my husband, Curt, was selected to run the Boston Marathon for the Ethan Lindberg Foundation, a nonprofit supporting families with congenital heart disease. In January our family traveled to Boston to be featured in their promotional video

 

Marathon time - our family raised over $12,000 for the Foundation and Curt finished the race in just over four hours. It was a day filled with all sorts of emotions - thrilled to be part of the event, moved by the runners persevering in freezing wind and rain, gratitude for the doctors that saved my son's life (like Dr. T pictured here), and devastated that congenital heart disease continues to take so many children away from us.

 

In late spring after a routine echocardiogram for my seven-year-old son, Griffin, we were told he needed more intensive testing. We headed north to Boston again in August for Griffin to undergo a cardiac catheterization and MRI. We knew there was a chance surgery would be indicated and sure enough, it was time. This picture shows Carly and Griffin at the rooftop garden on top of Boston Children's after we got the news. 

Fall

This week we will travel to Boston for our 4th trip in 2018 for Griffin's open heart surgery. My heart is aching and I'm scared, but when I reflect on traveling to Boston for Griffin's birth I realize what a long way we've come. Back then, we had no idea what Griffin's life would look like and now I've had the great honor of being his mother for almost eight years. This disease truly affects everyone in the family and traveling far away for care takes a big village. I know how fortunate we are that we can make this happen.

I'm taking a little break from writing to focus on my family so you won't get my newsletter for the next couple of weeks. In the spirit of my new program, Sanctuary, I'm challenging myself to find a moment of sanctuary each day while Griffin's in the hospital and I'll be posting them on Instagram with the hashtag #orchidstorysanctuary. 

This time of year can feel overwhelming for many of us; I invite you to come join me on Instagram and share your own version of sanctuary with me. I'd love to see how you create safe, warm, and inviting spaces for yourself amidst this busy season. 

Finally, this year has held so much goodness and growth for Orchid Story. I want to say thank you to each of you for reading these words, sending me sweet notes, taking my workshops and classes and giving me all the good vibes. My hope is that by sharing my own stories of finding strength in my struggle you feel encouraged to do the same. 

Dementia Made Me My Mom’s Mom, And It’s Devastating. Here’s Why It’s Also A Gift.

Getting There

I opened my email and saw a word I'd never seen before: Kripalu. It was an email from a student of mine, someone who saw my heart as I saw hers without the need to talk much about it. I scrolled down and then saw this more familiar term "narrative medicine". I felt my shoulders straighten because that's my jam and because that's the graduate program my sister in law completed at Columbia.

This email was about a workshop, a retreat. Where was Kripalu and how did you even pronounce that word? The description jumped off the page at me. Writing, self-discovery, psychology, storytelling. Healing. The workshop was long, almost a week, and it was far away. It was also coming up quickly so obviously there was no way to plan and make arrangements. I responded to my student, "This would be perfect for me... Maybe in the next couple of years when the kids get a bit older." I closed my laptop and went on with my day, Kripalu, however you say it, shrinking away as quickly as it came.

Two days later, same place, same laptop, same email account. In my inbox I saw that funny word again, "Kripalu". I clicked it thinking it was a reply from the same student. Nope. This was the same Kripalu email about the Narrative Medicine retreat, but forwarded from a different student of mine. Another student with whom I had truly connected in the past year.

This time I got a tingle up my neck. My immediate response was: I need to take this more seriously. When the universe, G-d, inspiration, your muse, or whatever you name it comes to you twice, it's time to listen. 

Several weeks later I packed up as if for summer camp and drove eight hours to Kripalu, nestled in the Bershires in Western Massachusetts. It was one of the most life-affirming weeks of my life. I found my people (people like you, my dear reader). The morale here is that listening to the little whispers, the knowings in our heart, can lead us to the experiences in life where we feel most at home, most like ourselves, most happy. Don't ignore them even when it's inconvenient and hard.

Writing prompt: When was a time when you followed your intuition and what happened when you did?  

ps Swami Kripalu was a yoga master. You can read a little more about him here. (I'm no expert but this is how I'm pronouncing it: krĭ-PAW-lu.) xoxo

Summer series: Chronic Illness

The Bellevue Literary Review is a literary magazine published by the Department of Medicine at NYU School of Medicine. The essays and poems examine how illness affects the human condition. These are super high quality pieces of writing that I think you would enjoy. One day I hope my work will be published on those pages.

I was looking for a piece to share with you that examined chronic illness and the one that struck me the most was from the point of view of the son of a man with multiple sclerosis (MS). This isn't lost on me - as the child of a mom with a chronic illness of her own, it's no surprise I landed upon this piece. The author examines his own adjustment to MS, which seems to color his entire existence. This is in contrast to his father's seeming nonchalance about his condition. Isn't this fascinating? That two people in the same family can live through the same experience and have a completely different response and outlook. This line jumped out at me:

I became, in short, his emotional shadow, feeling all those things it would have been understandable for him to feel, if he had been a different kind of person.

I often ask myself why things stick to me and weigh me down. Why I carry bricks of concern in my backpack while others shed their backpack altogether. I think that's why I enjoyed this piece so much.  I felt a connection to these words that sometimes seems hard to find in my world. 

I hope you enjoy it too. What about it resonates with you? Reply and let me know. I recorded an audio file of me reading the piece since it is on the longer side. 

Read "Cripple's Kid" by David Milofsky

Listen to "Cripple's Kid" by David Milofsky

You can't know if you don't ask.

Recently, on a ball field in my town, I was chatting with one of the dads. I hadn't seen his wife for while, which didn't seem unusual. Two working parents, two young kids, your typical busy family. I said to this man something so callous, like: "Where's your wife been hiding, I haven't seen her in forever?"

His response made my stomach churn. She hadn't been feeling well and they were having a hard time figuring out what was going on, despite involving numerous health care providers.

This possibility hadn't even crossed my mind. 

So often we are stuck in our own worlds to the degree that we don't even take notice of what's happening in the world around us. And I'm not talking about the bigger world and feeling bad about not being involved in social justice or the myriad of other causes we might choose to dedicate energy to. I'm talking about the people in our community, in our circles, on our streets. The ones we see without really seeing. 

We do need to take care of ourselves before we can serve others. And yet, people around us, people we see each week, are suffering and we don't even know it. There were many opportunities to ask about this mom, to notice that I hadn't seen her at all in weeks, before I did. 

We make the assumption that everyone else has everything figured out while we are still trying to get the laundry that was done five days ago back into the drawers. But it's simply not true. I don't care if that person drives one of those huge, extravagant SUVs or shows up for every school event with vegan cupcakes. Every single one of us is suffering in some way and sometimes people are going through difficult times right under our noses. If we don't ask how people are doing, we can't know. If we don't know, we can't help. 

This conversation on the baseball field reminded me of all this. When I'm suffering all I want is for someone to reach out and say: I see you, keep going, I have faith in you.

Let's do that for others too.

Summer Series: Separation and Divorce #2

I love sharing research that examines how writing your story can be beneficial to your health (or not). This week I'm sharing an article that looks at how writing affects your physical health. 

Journal Article: Bourassa et al. Impact of Narrative Expressive Writing on Heart Rate, Heart Rate Variability, and Blood Pressure After Marital Separation. Psychosom Med. 2017 Jul/Aug;79(6):697-705.

Participants: A group of 109 recently separated adults

Design: People were placed in one of the three groups below. They also underwent a bunch of cardiovascular (heart) tests during the months they were involved in the study. Three groups:

1. Traditional Expressive Writing: write about the emotions surrounding the separation
2. Narrative Expressive Writing: write your story about the separation
3. Control group: write about how you spend your time

Finding: People in the Narrative Expressive Writing group had lower heart rate and higher heart rate variability than people in the two other groups. Both of these are good things for your overall health. Blood pressure was not different among the groups. 

Takeaway: Writing your story after separation might help improve your physical health. 

Commentary: The study I shared last week found that writing your story could be bad for your emotional well-being in some cases. Well, some of those same people were found to have improvements in their physical health after writing their story. It's a little confusing. Should I write because I want to be healthy in my body or should I stay away from writing because it might be unhealthy for my mind? My take: If you are someone who is deep in a well of trying to find meaning from your separation, it might behoove you to hold off on writing. Otherwise, try it and see how it feels for you.