How have your values changed as your story has changed?

I like to use a tool called the T-chart with my students. It's a simple way to map out how far you've come past that black-and-white, before-and-after moment when your life changed forever. My student Danielle did an amazing job of this and I wanted to share her chart with you.

You can do this one, I promise. Grab a sheet of paper, draw a line down the middle and label each side. Danielle chose Values Then and Now. You can do Beliefs, Priorities, Habits. Which feels right for you? Writing it down makes it so much more tangible and allows you to experience the benefits of the practice. Share it with me if you try!

It's Ok to Not Be Okay

 
This was my most popular letter in the What I See In Your Story series.    Sign up for my newsletter here to get my words straight into your inbox.    There’s lots I only share with my community via email!

This was my most popular letter in the What I See In Your Story series. Sign up for my newsletter here to get my words straight into your inbox. There’s lots I only share with my community via email!

 

Dear Orchid,

I know you feel so alone. I know you feel like the chaos and uncertainty surrounding you has paralyzed you. I know you feel stuck, unsure of how (or even whether) you will get past this season.

It's okay to not be okay. It's ok to be full of anxiety and fear. It's ok to have a bad day(s). It's ok to not be productive.

You are still the ambitious and creative person you are at your core. This trauma does not define you. You are not this loss.

One day you will be able to look back on this time and see your strength, see how resilient you became in the face of this. One day this story will become woven into the fabric of your life. One day you will turn around and be shockingly delighted to see the mountain you have climbed.

Until then, it's ok to take your time. Let this be your seed of hope.

Remember - your story is your strength,

Rachel

How One Remarkable Woman Sees the Psych Ward as a Gift

It is my great honor to introduce to you one of the most courageous women I know, Cassandra Tillinghast. This is her story.


This is a story about the importance of giving ourselves gifts - you see, I just celebrated my 42nd birthday, and so gifts are front of mind.  These days, though, I’m finding that the kinds of gifts I value most are taking on a different sort of patina. For example, last year around this time, I gave myself the gift of attending a week-long silent meditation retreat in West Virginia.  My 30-year old self definitely would not have considered that such a great gift (she would have preferred a pair of Jimmy Choos) - but she would at least have acknowledged it as a loving act of self-care. But sometimes the gifts we give ourselves don’t feel that way.  And it’s one of those types of gifts that I want to write about today - it’s a gift that I gave myself not all that long ago, one that didn’t feel like a gift at the time, one that I almost never talk about and about which only a very few close friends and family members know.  It’s a gift that I’m terrified, and yet feel compelled, to share with the world now. That gift was the night several years ago when I checked myself into the emergency room, and then the psychiatric unit, at Inova Fairfax hospital. At the time, it felt less like a gift, and more like an act of desperation – and in a sense, it was. At the time, it felt like the most conclusive evidence I had to-date (and believe me, I had LOTS of evidence) that I was a complete failure.  A fraud. A nobody. A disgusting human being. Not even a human being. At the time, living felt too big, too hard, and basic acts of self-care (such as eating and sleeping) were beyond what I was willing or able to do because of the extreme hate I had for myself, and for the world. I later learned how to peel the layers off that hate, to seek the truth behind it. At first what I found was a deep well of sadness, profound grief, intense fear, and the darkest shame. I later returned to love.  And admitting myself to the the psych ward was the gift I needed to begin making the journey back.

You may be asking what was it that happened to me that brought me to that point?   The stories that answer that question are complex and go back as far as 35 years. Some of those stories I've shared, and many others remain my secrets to keep (for now - maybe forever).  But this story - the story of finding the courage to get help - I’m sharing today, even though the telling is terrifying, as another gift to myself, and also as a gift to others, in the hopes it helps to destigmatize mental health diagnoses and treatment, and maybe even give someone the courage to seek out the help they’ve been putting off getting.  So many people are suffering – I know I’m not alone in my story. I don't want to to turn this into a litany of statistics, but the data on mental health is astounding. Some 20% of American adults experience a mental illness each year - including 18% living with anxiety and 7% living with major depression. The impact that mental health issues have on our societal well-being is staggering.  If dollar figures impress you, consider that some estimates suggest mental illness costs the U.S. $193 billion annually in lost earnings. Or how about lost lives, rather than lost earnings, as an indicator - 90% of those who die by suicide have an underlying mental illness, and before you file that under the category of the blindingly obvious, did you know that suicide is the 10th leading cause of death in the U.S.?   And the ways that our mental health (or lack of it) play into other societal challenges we face - domestic abuse, rape and sexual assault, drug and alcohol abuse, gun violence (and the list goes on) - cannot be overstated. By the way, only 41% of adults in the U.S. with a mental health condition received mental health services in the past year - and preventative mental health care isn't even something that we're talking about in a cohesive way.  Yet.

So it's actually pretty remarkable that I sought - and received - treatment when I was in crisis.  In terms of the immediate triggers that got me there - frankly, the days and weeks leading up to the night I checked myself in are a blur.  I remember that I was overseas, traveling on business, when the cracks started to show. I remember, on the morning of a big presentation to a client, receiving an upsetting text from my father (as it turned out, I later learned, he was having a stroke).   I remember my already high levels of anxiety, which pretty much was a normal state of being for me at that point, amping up to complete panic. I remember my primary thought being how I was going to get through what I was sure would be a disaster of a presentation, in no small part due to my own ineptitude at trying to transform myself into something other than the myopically focused work-a-holic M&A lawyer I had fashioned myself into over the prior 10 years.  And in that moment, I remember judging myself for worrying about the silly presentation when lord knows what was ailing my dad, but feeling trapped into thinking my job assignment first because I was the primary provider for my husband and children. I remember feeling like I was failing all over the place - as a professional, as a daughter, as a wife, as a mother, as a woman.

Memory is a funny thing - I have no memories of the presentation (it must not have been too much of a disaster) or the flight home.  The next thing I do remember is being back stateside, gripping my steering wheel, white-knuckled, as I sped down the George Washington Parkway on an early morning commute like an endless series of so many others, still dark out, with NPR like white noise on the radio with the latest unbiased report on…something.  As I neared the Key Bridge, suddenly, I wasn’t feeling the vibration of the road beneath me, but instead the breeze in my hair as I stood on the side of the bridge, watching my car accelerate off and over the guardrail and plunge down into the Potomac River below. And then I was back in the car, water all around me – in my hair, in my eyes, in my mouth and lungs.  The rush of water turned into the rush of wheels on the road, and the vibration returned as a reminder of the here and now. I don’t recall how I got through that particular day at the office, but I remember that night. I remember being angry at myself for not having retained my life insurance policy after I left my BigLaw job with its BigLaw salary in an effort to reduce monthly expenses now that I was earning significantly less, because I had Googled whether life insurance would pay out in case of suicidal death (the answer was not if it occurs in the first two years of the policy).  And so I was crunching the numbers on how long my husband and two children would be able to cover expenses on our current savings after I was gone (I’m the one in the family that is responsible for our financial well-being), and it wasn’t long enough. 

Somehow, in that moment, some rational part of me realized that this was insanity, that I was in crisis, and that I needed to seek help.  And so I started trying to figure out how to do that. I just want to say that process was not easy and required multiple attempts. If I were not who I am - an educated, empowered, resilient and feisty bitch - with the resources I have available to me - including supportive friends and family, money, a good job, and great insurance - I'm not so sure how things would have ended up.  After some internet research and several phones calls to a friend, a therapist, a crisis hotline, and a private wellness center, I learned that my options were to: (1) do some deep breathing exercises (thanks for the tip, but not sufficient), (2) wait for space availability and check myself into a private wellness facility (which would not accept insurance and would cost in the tens of thousands of dollars for a 2-4 week stay), (3) wait for space availability and seek outpatient care from a hospital-run mental health treatment center (that might accept insurance) or (4) admit myself to the nearest emergency room for immediate evaluation and treatment.  I chose option 4, and my husband drove me there. The rest of that night, a resident and a nurse took turns holding my hand as I cried what seemed like an ocean of tears I had waited a lifetime to release.  They waited with me for hours to find out whether a psychiatric unit had a bed that I could take that night, or whether there was space available in an outpatient facility that would accept my insurance and could take me the next day.  As it turned out, the only immediately available option was the psychiatric unit at Inova. I remember a social worker asking me several times if that was what I wanted to do, because maybe we could figure out something "nicer" for me. But I didn’t feel like I could wait – and I wasn’t really worried about making sure it was "nice,” because at that point the alternative was death, so beggars can't really be choosers was my philosophy.  So, once my bed was confirmed, the nurse put me in a wheelchair and an orderly took me on what felt like a very long trek from the ER to the 4th floor psychiatric unit.

I have struggled mightily to find a good way to describe my first night on the psych ward.  In that, yes, it is an experience that is decidedly not good, and it’s also just incredibly difficult to convey to the uninitiated.  It was dark on the ward – it was the middle of the night – but hardly quiet. Patients, inmates, I didn’t know which, shuffled aimlessly around, some vocal, some mute.  There was a muffled sort of painful sound as I entered my room and found my roommate asleep, but not peacefully. As she moaned and cursed, I fumbled in the darkness toward the bathroom with no door and flipped the light to find a sink and a toilet, but no mirror (a safety measure, I was later informed).  I rinsed my mouth out with water, flipped off the light, and crept into bed. I felt such complete and total exhaustion. But also a sense of sheer relief at having temporarily escaped the torture of being me; at finally being able to rest; at getting a vacation from myself. And I was terrified. I closed my eyes, my mouth felt sour, and pulled the covers over my ears as I tried to drown out the sound of my roommate’s nightmares, and to hide from my own.

I was “on the inside” for a week, and there’s probably a chapter (maybe even a whole book) on what that week looked like for me.  I’m not sure what you imagine a psych ward to look like, but if scenes from One Flew Over the Cuckoo’s nest come to mind, at least in the case of the place I was, you would not be too far off from reality.  The walls on the ward were a dingy green, the smell of disinfectant and urine and worse – nothing at all like the pretty pictures I had seen on the internet of the private wellness facility that I probably could have afforded, but that I would not have availed myself of anyway because I didn’t value myself enough to think I was worth it.  I remember the morning after I checked in going to the showers and looking down at the water that covered the floor, ankle deep and covered in places with frothy grey scum. I had summoned everything in myself to go bathe, to let the hot water strip away the dirt that permeated from my skin down into my very soul. There were towels on the ward, but no soap or shampoo, and I hadn’t been in a frame of mind to pack a bag when I left for the ER the night before.  So I undressed down to my socks and carefully tiptoed over to the showerhead under which there was the least amount of sudsy grey. Lukewarm water poured over me, but I couldn't feel clean. I never had. I scratched myself dry with the threadbare towel, redressed, and wrung out my socks. When I returned to my room, my roommate took one look at my bare feet and handed me a pair of pink fluffy socks from her bag. “Take these,” she said, “until your husband can come and bring you another pair.”  I still have those socks in my drawer today and wear them from time to time as a reminder of how far I’ve come and of the beauty of small acts of kindness of others. I smile every time I put them on.

And over the course of the time I was there, in various group therapy sessions that all of us (patients? inmates?) were required to participate in, I learned I was keeping company with, among many others, a middle-aged woman (my roommate) with a husband, two children, and schizophrenia; a 9-11 first-responder and career firefighter/EMT with PTSD; a 20-something drug dealer, addict and father-to-be whose pregnant girlfriend was in rehab at another facility; a teenage girl who spoke barely above a whisper to share she was in for the third time, and was now a candidate for shock therapy.  There were some of us there who were suffering from severe mental illness to the point of being catatonic, but there were others of us that seemed functionally "normal." As I looked around the ward, I wondered what is it that causes a person to crack. How is it that some seem to be able to endure and endure, while others break under the pressure? And for us broken ones, do we share some common trait, quality, defect? Looking at the statistics again as I write this, I'm realizing that we're all sort of broken, that suffering is part of the human condition - and that "cracking" is simply one indicator of the fragility of our human existence.  I guess it's a relief to have discovered that I'm not defective - I'm just human.

After a few days on the ward, I was able to meet with a psychiatrist and tell her what I then understood to be my story (which, by the way, is constantly evolving as I lean in to better understand my past and my present).  She quickly determined that outpatient treatment was the appropriate place for me to be. AND she commended my choice to come to the psychiatric unit first, as she noted that sometimes insurance companies balk on coverage for outpatient mental health facility services in the absence of clear evidence pointing to a need for treatment.  Time on the psych ward was, apparently, adequately clear evidence. She also told me that a parent’s suicide is psychologically more harmful to a child than physical abuse– a message that I needed to hear. So I spent the week there, before moving on to spend another three weeks in outpatient treatment. And that outpatient treatment led me to an incredible therapist.  And that therapist led me to many other things, one of which was the meditation retreat I mentioned at the beginning of this post. 

Believe me, there is no one more thankful than me for the treatment I was afforded – I’m not 100% sure I would be alive today if I hadn’t received it.  But I think we need to be very very real about the state of our mental health system – what works, what doesn’t, what we think good should look like, and how it can be better.   And telling stories like these feels like one way to start that conversation. I have been – and still am – terrified to share this story with the world. But I’m feeling the fear and doing it anyway because mental health is a topic we desperately need to advance on as a society, and I want to be a part of the conversation and our evolution. Of course, it’s also possible that sharing this will affect my ability to “succeed” (in traditionally understood terms) in my current – or future employment.  People judge – it’s what we are wired to do. But I’ve decided that it’s more important to me to take that risk and speak freely on something that I feel passionate about as an advocate for change. After all, I’m trained in advocacy. It’s high time I use that training in a way that feels meaningful.

I don’t know what that advocacy looks like just yet.  I think it starts with sharing this piece of me with you – many of whom know me and may have thoughts about me that aren’t consistent with what you think about someone who has seen the inside of a psychiatric unit (or maybe they are entirely consistent, only you know).  I think it also starts with something simple – and which involves an ask from you. On my last day on the ward, as part of discharge procedures I was presented with a “customer satisfaction” survey of sorts. As I checked through the boxes, rating the unit on a scale from 1 (best) to 5 (worst) on dimensions like cleanliness of facilities and tastiness of food, I wondered who would read my responses, and what, if any, change would result.  I wondered if funding was an issue, and thought about the access I had to people in the “1%.” I wondered what the employees on the ward thought were the biggest challenges and needs in providing service that would warrant all “1” ratings, rather than the all “5” ratings I had given. So when I turned in the survey, I asked the nurse – if you could have anything you wanted to improve the level of patient service you are able to provide on this ward, what would it be?  She looked at me blank and confused – she obviously didn’t understand the question. So I asked it again, in a slightly different way – if you could wave a magic wand, what would you wish to have on this ward to make things better for the patients here. She still looked confused, but this time she gave me an answer. “DVDs,” she said, “the patients always enjoy good movies.” I remembering feeling really crushed by this answer – just so disappointed as it seemed so mundane and simple and not something that would move the needle at all.  And so you know, I didn’t give them that. It’s over four years later and I still haven’t given what she asked for. I don’t know why – maybe because it just didn’t feel big enough. Maybe because once I left, it took until just recently for me to be able to look back at the experience and the ask in a different light. And so this month, in honor of Mental Health Awareness, I’m going through my DVDs. And I’m assembling a box. And I’m taking that box to the 4th floor at Inova Fairfax.  And if any of you have any DVDs you would like to contribute to the cause, please contact me and I’ll come get them from you.  Because damned if I’m not going to give them what they asked for. And then I’m going to find a way to give something more. And I would love for those of you reading this to in some way be a part of that – whether it’s through donating DVDs, or money or time – because it’s going to take one hell of a village to make our mental health care system better.

So, today on heels of the celebration of my birth, sharing this story is my gift to myself, to you, and to the world.  Thank you for reading it. And of course it’s not over yet – this is just the beginning. And so life goes on. Thank God.

Book Club: The Orchid and the Dandelion Part 1

Where did the name for Orchid Story come from? From the very theory discussed in Dr. W. Thomas Boyce's new book! Join me to learn more about this fascinating idea that helps us better understand our children and ourselves.

You can find the David Dobbs article from the Atlantic here.

Reach out to me with your reactions or questions about the science. I’m obsessed with the ideas in this book!

Grace for the Messy Middle

However you visualize your Heroine's Journey, (I've found it to be a helpful way to put things in perspective) the Dark Night of the Soul, aka the Messy Middle, is part of it. It's a human experience shared by all of us. In my role as a caregiver for my mom with dementia, I am smack dab in this place. It's kinda a tough spot. In case any of you are also here with me, I thought I'd share some things I've been thinking about. 

The Cocoon
Awhile ago I listened to an interview with Britta Bushnell, PhD on the Atomic Moms podcast. She talked about confronting the unknown by drawing upon the mythical story of Inanna, the Sumerian mother goddess of Heaven and Earth. It's essentially another version of the Hero's Journey, with a goddess as our guide. The messy middle is a big part of this story. Being in this place is critical to transformation. Eventually we will emerge as a beautiful butterfly. For right now though, 

🦋 The length of time is unpredictable. 

🦋 We are patient.

🦋 We surrender to the process.


Asking for help
For many of us, it's sooo hard to ask for help. Why? For me I think it's the fear of hearing "no" in response. Guess what? People do say "no". The kind-hearted, "Let me know how I can help!" people. Our brains like to turn this into a big deal: why should anyone help you? you're never going to get this worked out, you might as well give up. everyone is too busy to care about your problems. Sound familiar? The flipside is that if you get the courage to keep asking, there are people who say "Yes!" with the most generous, beautiful, compassion. Just last week I had a friend say no and a friend say yes. The yes was a big one - our neighbors used their airline miles to purchase flights for our family (!!). Still, my brain keeps returning to the no. We have to remind ourselves of the good around us, redirect our minds to focus on the positive. 
 

This little nugget popped into my head last week and I've been trying to keep it in the front of my mind:

Let me hold your story for awhile so you can rest. 


Doesn't that feel like fresh air? We can think of "me" as G-d or the Universe or the Divine or a friend, but I don't think it has to be a person. We all need the opportunity to set aside our burdens for a moment to catch our breath and look around. 

A Frowning Smile

I've had a rough week full of disconnection with my nine year old daughter. Today I noticed she was getting dressed without prodding, brushing her hair and doing what she needed to do to get out the door on time for school. I was so proud of her and she seemed so beautiful and precious to me in that moment. I made eye contact with her and smiled. Not a huge wide-toothed smile, but I felt my facial muscles move into the place they go when I smile.

She stopped in her tracks when she saw me staring at her and said, "What?" Let's just say I sensed some venom in her voice.

I just love you and I'm proud of you.

Then why are you giving me that look?

I'm smiling at you babe.

That's a frown trying to be a smile.

Here I was showing up with the absolute best of intentions trying to connect and she still didn't see it this way. How bad must it feel when I'm reacting out of a place of anger or irritation? It was a reminder of perception and how much our kids feed off of our energy. We have to literally ask them the question to make sure we are on the same page.

This applies to all relationships in our life. With our partner, at work, with our friends. Unless we have the courage to check in, "You seem a bit off today, did I say something that upset you?" we could be two ships sailing on different rivers, in opposite directions.

I wrote today's post in response to a podcast interview question from the amazing Maria Alcoke of The Engine Mom podcast. Use this question that Maria asks all her guests as your writing prompt for this week:

What is one thing that motherhood has taught you this month?

For those of you without kids, simply substitute partnership or yoga or nature or life for "motherhood". I’d love to read your response - email it to me!

The Messy of "And"

I think and write a lot about living in the “and” of life. That’s the place where seemingly conflicting or contradictory feelings arise and the idea is to allow them both. Just because a feeling feels icky or maybe not what you “should” be feeling, you still allow it to be there and co-exist with your other feelings. I think we often stuff our feelings so quickly that we might not even notice them. We were told as kids, “It’s not scary” or “Stop crying, there’s nothing to be upset about” or “Everything is fine” and we ingest this for life.

My version of embracing “and” is about acknowledging and allowing the feeling. I think this is one of the paths to personal growth. I need some teachers along the way because this stuff is hard. I love to listen to Megan Hale’s version of this on her Wild & Holy podcast. Episode 12: The Underbelly of Expansion was all about how parts of us contract in the middle of expansion.

You know I always use myself as the guinea pig when I’m trying to figure something out, so I am going to use a recent anecdote to illustrate.

Back to School Night happened recently. The day of, I worked at my genetic counseling job, ran to the parking garage at 3:30pm, had my usual two hour long commute home, picked the kids up at their after care, brought my daughter over to gymnastics and then found myself in my kitchen with my husband and son. It was time to go to school for the event, but all I wanted was to sit down with them and rest. Going to school events can be challenging for me. No matter. I left with 10 minutes before the start of the session I was attending, plenty of time given the school is one mile away. Except I forgot about parking at school events. You would think we lived in Times Square. I parked about five blocks away, got out in my heels and started running. My good girl reflex kicked in and I didn’t want to make a bad impression on the teacher that might reflect poorly on my kid.

By the time I got the classroom I was dripping sweat and panting. Great first introduction. The teacher was lovely and calm, which eased my stress and I was feeling good by the time I pulled into the driveway back at home 90 minutes later.

Then my phone rang. I looked at it and saw the name of one of my mom’s caregivers. My stomach dropped, quick and hard. A very big part of my wanted to throw the phone into my bag and stride into the house to start the bedtime routine with my family, ignoring the call. Having been on the receiving end of these phone calls for the eight years since my mom’s diagnosis of a rare dementia, I have a strong hit of intuition when something is wrong. I just knew that answering the phone would lead to more action that evening. I didn’t want more action.

Let me pull apart here some of what I was feeling right in this moment:

Utterly exhausted from this marathon day and stimulated from a big shot of adrenaline knowing something has occurred with my mom.

Shameful that I wanted to ignore the call and proud that I can handle these moments of extreme stress.

Gratitude for having helpers that lovingly take care of my mom and resentment towards this disease that has taken over our lives.

I could go on. I think it’s so helpful to acknowledge and, as I’ve done here, write these feelings down. I don’t feel any shame now about these feelings. Processing them in this way is so helpful to me.

I did pick up the phone. There was an emergency. We dealt with it. Until the next phone call.

Your turn: Describe a scene where you had conflicting feelings. Then write out the actual feelings.

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

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.

Marathon Monday

On April 16th my husband, Curt, ran the Boston Marathon. Throughout the entire training process, every time I talked about the marathon I said "we," as in both Curt and me, as if I was running the marathon too. It just came out. I am not a runner and in fact I can't quite stand running. I think it's because when our partners decide to commit to something big, we feel a stake in it too. We want it badly for the person we love and we often have a significant shift in our daily schedules too.

Because he was running for a charity, Team Frannie of the Ethan Lindberg Foundation, this added to my feelings of connectedness to the race. I wanted to give back to this organization that had been alongside us since my son Griffin was diagnosed in utero with congenital heart disease (CHD) seven years ago. 

Also, the lives of several children who had died of CHD were integrally woven into this race: Ari, Chase, Ethan, Frannie. Their moms, dads, and siblings would all be present on race day. 

On race day, Curt got up early and headed out. The weather was as bad as predicted. The kids and I sat in the hotel restaurant watching the elite runners and wheelchair athletes at the starting line.  The rain was already gushing in torrents over the hotel entrance, soaking passersby. I was anxious about Curt having to stand in the wet and cold for hours before he started. I was anxious about all of the runners having trained so intensely to show up for this weather. Then they did a tribute on tv to the five year anniversary of the Boston Marathon bombing and my kids starting asking what had happened. Yes, I was anxious about that too.

We headed up to the hotel pool and I watched Carly and Griffin play. My heart was hurting, confused and joyful. Hurting for the pain that CHD has caused these families and my own. Confused about how some kids make it and other kids don't. Joyful that we had the once in a lifetime opportunity to be in Boston that day and participate, in our own way, in the race. 

A little while later, we arrived downtown. We stepped out of the uber and within ten second we were drenched. The kids starting complaining immediately but we went up to Beacon St. to watch the elite women pass. At mile 25, they were almost done. 

We stayed inside for a while, keeping warm. But, I had only one chance to see Curt and I didn't want to miss him. So, the Team Frannie crew headed out to Beacon St. Again, fully drenched within seconds. The rain was coming in sheets, sideways. By now the runners were slowing down. Many were walking. Several were already wrapped in the silver thermal blankets they normally receive at the end. Some were in between two runners who had their arms wrapped around the middle runner, almost carrying the person along. A double amputee made his way by on his prosthetics. I could see the pain in his clenched face.

About 15 minutes before we expected Curt, I took my hand out of my glove and held my phone, with the camera open. I wanted to capture the moment on video. This meant that my hand and arm were sopping wet and frozen and that I couldn't follow Curt on the tracker app because I wanted to keep the camera ready. 

The 15 minutes came and went. By this time Griffin was crying hysterically. He was freezing and wanted to go inside. Carly was ready to give up on seeing Daddy too. I couldn't hug them because we were too wet and I was holding an umbrella and the Team Frannie sign we made and the phone. I tried picking Griffin up and putting the umbrella down but that made things worse. 

I needed to make a decision and quick. Should I let them go inside and get warm? My mother's instinct said yes, especially for Griffin whose health could really be affected by this weather. But my human instinct said no. Their dad had undergone a grueling training for this day. The families standing next to me had undergone weeks and months of hospitals stays for their sick children. And, even if they didn't feel it right then, my kids would always want to have the memory of seeing their dad at mile 25 of the Boston Marathon. So we stayed out.

I started wondering if we missed him. What is he wearing? the Team Frannie supporters wanted to know. I didn't know or couldn't remember, the anxiety getting the best of me by this point. Is Griffin ok? they asked. I wasn't sure.

Finally, we spotted him through the driving rain. He looked fantastic - a big smile on his face and a great energy in his stride. I instantly felt ten pounds lighter. The kids switched from crying to cheering. I pushed the red video button on my outstretched hand. 

He gave us a each a kiss and then he was gone. I looked at my phone and realized it hadn't recorded the moment. I tried again as he ran off towards Boylston St, the final stretch the runners dream of. 


All the struggle and pain and beauty and transformation of life was happening right in front of us that day. Feeling so many emotions at the same time IS life. I was filled with pride and love as I watched Curt run past. Then I turned to take the kids in and caught the eye of my friend Jessica, mom of Ethan, and became filled with sadness for the loss of his life. 

Life is not black and white. It's not either or. It's messy and gray, confused and beautiful. I'm lucky to be here, right in the middle of it.

What's the shape of your journey?

What's the shape of your heroine's journey? 

Before you examine this question for yourself, have an understanding of your particular journey in mind. Ask yourself what you feel you've been called to do in this life. If that doesn't sit quite right or feels too broad, try looking at your journey as your path to finding your truest self. A journey of self-development. I love how author Elizabeth Gilbert talks about her own journey in this way. 

In the work I've done investigating the Heroine's Journey, I've come across three shapes of the path: circle, spiral, labyrinth. 
 

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Circle: This is the traditional representation and the one I tend to relate to the most. The reason is that there is a closure, a sort of ending as the circle comes back around to the top. To me it suggests that there is an end in sight to the journey. We will come to a completion. 
Of course, the flip side is that the circle might represent a never-ending journey of coming around and starting back up again. So that just as you have reached a sort of ending, you are thrown back into all of the hard stuff that comes with being a beginner. 

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Spiral: Another representation is the spiral. Think spiral staircase. We make progress and our view changes as we grow, with each step we take. We continue up the staircase as we age and mature; we can look down and see the many stairs we have climbed to get to the place where we are currently. I think this is a beautiful and peaceful representation, but one that maybe feels a little daunting (I'm gonna be climbing these stairs forever?). If the spiral feels like you, check out this article. I love the idea of our highest self reaching out to us from above to lend guidance. 

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Labyrinth: When I heard Elle Luna and Susie Herrick interviewed on the podcast Heroine about their new book "Your Story is Your Power" I almost fell off my chair. Wasn't that my book? (My tagline is Your Story is Your Strength.) I got over myself and bought it that day. Partway through I've already learned so much from these brilliant ladies. They are the ones who introduced me to the template of the labyrinth for your journey. Here's what they say about the labyrinth: "It is not a direct line from one point to another, but an organic, evolving process that takes time and moves to its own rhythm." Soothing, right? 

It feels good to step out of the go, go, go for a moment to reflect on our path. If you found yourself nodding along while reading this, please join me for the workshop I'm leading on Sun April 8th in Vienna, VA (and share with a friend). 

He won't even sit with me.

I feel like I need to qualify some things before I hit publish on this piece, but I'm trying to just let this one be. Once on an evaluation form for a graduate class I taught, a student wrote that I spend too much time introducing the subject instead of just getting to it. So, just one quick thing and then I'll get to it: I have my mom's blessing to write more openly about her condition and its effect on our family.

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We were riding in the car together. I was taking her home after my daughter's birthday party. It had been a fun, if chaotic, evening. Lately, Mom has been getting worn out quickly during these family functions. Worn out leads to confused leads to agitated so I was eager to get her home and settled.

She said, I want to talk to you about Griffin. Her brain is so tricky, because it is still able to formulate such complex thoughts in one moment and has complete tunnel vision in the next. She's able to convince renowned experts in neurology into thinking she's much more capable and independent than is actually the case. I've found that conveying the nuance of my mom's condition, a rare form of dementia, is like trying to swim in mud. The little moments are revealing though.

Ok, I reply, let's talk about it now. I'm not sure what it is about my seven year old that's bothering her. He won't talk to me or play with me anymore, she says. Her tears come immediately. We used to play games together all the time and now he won't even sit near me. If I sit near him he gets up and moves. 

I want to say oh, that's not the case at all. But she's right. I'm surprised that she's noticed because her condition makes it hard for her to judge social interactions. I take a breath and say, I've noticed too. It's confusing for them, Mom. It's confusing for me, so imagine how hard it must be for the kids. He doesn't know how to act.

But I'm still the same person, she says. I'm still me.

No, you're not. The thought is quickly formed in my head, but I catch it before it comes out of my mouth. This is the person that I considered my closest friend in life, the person who knew me best in the world. For a decade bits and pieces of her have been slowly falling away. I try to be present and be grateful that the decline has been so slow. When I do allow myself to reflect, it feels like I'm grieving. She seems unable to understand that I am deeply sad about her decline. Maybe she's incapable of this type of empathy now because of what's happened to her brain. Or it might simply be that it's hard to acknowledge that this disease is affecting her daughters and grandkids on a deep level. A particular cruelty of this form of dementia is that she herself is fully aware of the abilities she's lost.

I've noticed this happening more often. She says something with which I disagree, where the whole situation is not being represented, and I don't know how to respond. I feel so stuck. Every response is the wrong one. Reminding her that she can't play any games with the kids because she is essentially blind and can't see the faces of the Guess Who game much less have the coordination to tap the figure down is not constructive. Going along with her head in the sand view that, Everything is just fine, doesn't keep me in integrity with myself. I think I know what she means when she says this - that at her core, the truest essence of herself, she is still the same, even as all the former capabilities slowly get stripped away.  I've started to stay silent in these moments, all these thoughts whirling in my head


Lots of us are dealing with dementia in a loved one. I became a member of the sandwich generation earlier than many. I was 30 and pregnant when my mom was diagnosed. I have a wonderful support system and a terrific therapist. Still, I feel an internal drive to write about it to bring it out into the light. If you are experiencing something similar know that I see you. I see your shoulders hunched forward and the rise of anxiety in your chest when your phone pings. I see your struggle.

Do you know someone who would benefit from reading this? Please share. 

Love is Openness

We can't know how our actions will affect the people and the world around us, but I'm seeing real evidence that happens it all the time. The ripple effect is alive and present. I made a commitment to myself this year to write about my personal stories that I've held tight, not wanting to shed light on them. My reason for not sharing has been that I don't want to hurt people I love - because all stories are told in relationship. But I think that's been more of an excuse than a reason, so here I am trying today. This story describes why it's so important to me that I do. 

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Six years ago I became friends with a stately man in middle age with a bald head, glasses and a bow tie. And a lovely singing voice. I was drawn to this man because of the way he spoke about his young adult son, J, who was facing the most serious struggles with life. The kind that push a person to the edge of their existence. The kind that come with phone calls in the middle of the night. His father talked openly and I didn't sense the shame that so often surrounds these conversations.

But, oh the pain. The pain expressed by this man was so raw and so embedded in every fiber of his being. I recognized that pain almost instantly. And I connected to it.

I had a three year old and a one year old that year. I knew that my three year daughter was not thriving in the way all my friends' three year olds were thriving. Life seemed too much for my girl to bear and so she was in a constant battle with it. Which meant she was in constant battle with me, her mother. I couldn't fix it. I had been trying and trying for three years. I wanted to fix it so badly and I was so ashamed and wracked with a sense of lack that I couldn't. If she needed help that meant that I needed help too. In my mind that was equivalent to failing as a mother.

J's story was woven into my heart the first day I heard it. His father helped me to accept that getting help was not a choice. It was a need, a necessity. I don't know many details of J's life but I don't need to. His father gave me an enormous gift of showing me how to live as a parent of a child who is in pain. I don't think I could see my daughter's challenging behaviors as her own pain back then, but my eyes were opened to the idea of figuring out an alternative way to do parenthood. J's father showed me that it's possible to be grieving, to be joyful, and to be loving all at the same time.

It may seem odd to have made this strong connection between our experiences. He was parenting a 20 year old and I a three year old. This the beauty of love and kindness. We don't need to understand it. We only need to be open to receive it. And we need to be willing to give it of ourselves. 

I'm still learning how to parent my child who continues to experience the world differently than her peers. I still want to solve it and put it behind us, but I'm starting to understand that is not how this works. I have enlisted many helpers and healers in the past six years. A desire is growing stronger within me to live joyfully in this own life of mine and not let the weight of this keep me under the surface. 

Earlier this month, just as 2018 was waking up and stretching its limbs, J released himself from this life. He was 26 years old. I know this is not the end of J's story. He will continue to touch me and the many others that survive him. His story will ripple. 

I've seen his father since that day. I see him in deep, deep grief and joy and love. 

Your story doesn't end.

Last weekend, in sub-zero temps, my family traveled north to Boston. It had been seven years, exactly, since the time we spent there when my son Griffin was born. It was a weekend to feel all the feels. 

My husband is running the Boston Marathon this spring in support of the Ethan M. Lindberg Foundation team, Team Frannie.  Our connection with the Foundation runs deep. Over seven years deep, if anyone is counting. They were the moms who connected me to other moms in the early days of Griffin's diagnosis, when my belly swelled in front of me and his heart was the size of a grape. I've followed the stories of so many heart families supported by this foundation in big and small ways.

The four runners on Team Frannie were in Boston together to film a video capturing their own stories of connection to congenital heart disease (CHD). The families of the runners were invited to participate too. It's hard to put words to the feeling of being in the same physical space as these families, all touched deeply by CHD, who have chosen to put their energies towards helping other families. Well, and towards running many, many miles. Several of the moms with us last weekend, including Ethan's mom and Frannie's mom, have lost their children to this disease. So yes, there is a great sadness. And, there is also a great hope. A great light. That from the deepest, darkest place a tiny seed can be planted. It may take a long time, but that seed can grow. The sprout may be tiny and it may be surrounded by grief, but still, it can grow. These families are a living testimony that the from the deepest pain can come the most beautiful joy. And yes, that joy is tinged with sadness, because life is both, not either or. 

The memories of being in Boston for Griffin's birth came rushing back. I have visual memories of that time and visceral memories that I feel in my body. There was so much uncertainty, deep, never-ending uncertainty that we had no choice but to manage in the moment. And now, seven years later, we have this joyful, endearing, sweet, sweet boy. Who still has not had an open heart surgery. 

We are so grateful and happy for Griffin's outcome. And I am so affected and saddened by the losses of other families. Again, it is both. I hold both of these thoughts together anytime, literally, anytime, I think of Griffin's journey. There is still so much uncertainty, but I have become much better at dealing with it and of course the intensity is not as strong. I think, well, actually I know, I am a better person for facing it and turning it around and around  to examine every day. 

Our stories don't end. I will likely keep rewriting my story of being a heart mom for the rest of my life. There is hope in that for me. That our stories can always be changed, they always will change. And that we can influence them, we have that strength. We can reach out to another mom to share what we've learned, we can choose to advocate for a cause we believe in. We can nurture the seed planted in the dark. 

p.s. One of the highlights of the work of this Foundation is a retreat for mom's who have lost a child due to chronic illness. If there is someone you know who might benefit from this retreat, please pass along this info. Moms are the backbone of our communities and we need to support them. http://www.ethanlindberg.com/retreat/