The time I sat onstage and did not utter a word during a big talk.

Watch the video to see why this was a pivotal moment of transformation and how it might relate to your life, especially if you have one of these beliefs: 1. The anxiety and uncertainty you carry is going to weigh you down forever; 2. Self-care is not important for me.

These are the exact type of self-limiting beliefs we work to reframe in Sanctuary. I invite you to check out the program to see if you are a good fit - we start in Oct. Click here to learn about Sanctuary.

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

This Is My 40

Three life lessons from a tumultuous last decade.

1. Self care is no joke.

For a long time I believed that rest was for wimps. In college, I attended class all day, headed to a grueling three hour gymnastics practice, then studied at the library well into the night. I’d wake up for my eight o’clock classes and start all over again. It wasn’t that I was a human machine - one of my professors even called my gymnastics coach because I was constantly falling asleep in class. I simply would not acknowledge that I needed rest. After college, I kept this familiar schedule, working all day and coaching at night. Looking back now, I was running on fumes of anxiety. Down time terrified me. The expectations I put on myself were crushing and no amount of studying was enough. 

It took having kids and leaving a job in academia after almost a decade to help me understand that this pace was unsustainable. It wasn’t one moment or even several, but a slow realization that I because I was not taking good care of myself I was not showing up as the person I wanted to be in the world. I had an extremely short fuse, lots of simmering anger, and I didn’t have any clue about experiencing the present moment. I had one speed - GO. 

Gradually, I made big shifts in my life. I quit my job that had me commuting over an hour each way (with kids, full time). I started a new job from home. I went to therapy for the first time. I began my writing practice. More recently, after my migraines started significantly impacting my quality of life, I decided to try to get eight hours of sleep each night. I finally figured out how to nap. 

I did these things over the course of about five years. There was surely no magic bullet. But I can honestly say that most days I feel really good about what I’m doing with my time and how I am progressing as a person. I have so much room to grow, but I’m also really proud of the choices I’ve made to get myself to this place. 
 

2. Most of the small stuff doesn’t matter. Really.

Not long after my husband and I moved into our first home, a poorly built condo for which we paid way too much at the height of the real estate market before the recession, we had a toilet break. My parents were visiting. All of a sudden water starting coming through the ceiling where the chandelier was hung over the dining room table. I completely lost it. I was screaming at my family as if it was somehow their fault. I couldn’t calm myself down. My dad finally suggested I go out for a walk to cool down. This was my thing - get really mad, really quickly. Why was I so quick to boil over? Who did this anger serve? I guess I got a release and adrenaline rush when I let that anger go by yelling, but this was something I was not proud of. 

For me, it took experiencing significant life challenges to fully understand and agree with the idea that most minor annoyances of daily life are not a big deal. When you say goodbye to your newborn, delivered into the world just hours earlier, and watch him wheeled away to undergo a cardiac catheterization under general anesthesia; well, traffic and picky eating and email just seem like ridiculous things to be worried about. Practicing being grateful has helped me too. When I’m struggling mightily with being a caregiver for my mom with advanced dementia I try to recall how grateful I am that my sister and I are a team, almost always aligned in decision-making and having each other’s backs for support. Facing this disease without my sister is unthinkable. 

I lose sight of this one routinely, but I think I’m getting quicker in my recovery and I know my anger has decreased significantly. Just recently I arrived at the pool with the kids and noticed a hissing sound when I get out of the car. Turns out there was a screw in my tire. Instead of losing my cool, I thought about how fortunate it was that I noticed it and I quickly got the car back home before the tire was entirely flat. No biggie. 
 

3. Your story really is your strength.

Like lots of new moms, I joined a baby group when my eldest was a newborn. There were probably 20 mom/baby pairs in this group led by a breastfeeding expert. I remember watching with a kind of horrified fascination as all the moms laid out their adorable teal and white chevron baby blankets, placed their baby upon them, and then actually sat back and participated in the discussion. My own dear baby (the one who’s now 10), screamed bloody murder if you dared try to leave her on the floor by herself. She was usually screaming anyway, but the volume was somewhat decreased if she was attached in some way to me. I can’t recall a single positive moment from that group and I think I may have stopped going, unable to handle the feelings of defeat that came in waves as I tried to get through those sessions. My early motherhood was filled with these moments of feeling alone, separate from the other moms, aside from my closest of friends. 

We've since learned that this little baby, my daughter, Carly, experiences the world differently than most people you know. When she was a toddler she would often tell me she wished she was still inside my belly. The world was too much for her to bear. She needed parents who could let that be ok. Parents who could handle huge emotional hurricanes that roared through her little body. We were not those parents. Slowly, over the course of several long years, we changed the story of the parents we thought we were to become the parents Carly needed us to be. 

Back then I couldn’t have imagined how Carly would have changed my outlook on life, but now I see how she has rewired my entire brain. The experience of feeling isolated as an outsider was new to me and brought along a new perspective, a new compassion for other people and for myself. Seeing my own child struggle in every possible way and trying for many years to help without seeing much success also made me a more empathetic person with a capacity for holding space for heaviness, discomfort, and loss. 

This very thing I resisted, the ability to sit with the most challenging of emotions without changing or avoiding or shoving them behind the curtain, is the exact thing I bring to the women I work with in my business. It’s what I am teaching them to do with their own stories; look at the darkest of times square in the face and see the beauty in what you’ve become because you found your way through.  

Book Club: Mental Health Awareness Round Up

I’m sharing two pieces of writing by outstanding female writers and why mental health is so important to me personally and in my business. If you want to explore your own mental health journey but don’t know where to start I’d love to be your guide.

Resources mentioned in this video:

How One Remarkable Woman Sees the Psych Ward as a Gift by Cassandra Tillinghast

The Collected Schizophrenias by Esmé Weijun Wang

#MyYoungerSelf Campaign from Child Mind Institute

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: Michelle Obama's "Becoming"

Nuggets of wisdom gleaned from “Becoming”. This book is so good! I’m nodding my heading with every turn of the page.

Do you miss my writing? I’m still doing it, just sharing mostly with my newsletter list at the moment. You’re on the list right? If not, hop to it - join by clicking here. You’ll get my beautiful guide, Rewrite Your Story, just for signing up.

Book Club: Inheritance

What a treat to have the pleasure of meeting author Dani Shapiro several weeks ago when she was in town to promote her new memoir, Inheritance. I’ve loved all of Dani’s books because she dives headfirst into the pain and shows us how crafting a narrative helps to get to the other side.

Inheritance is fantastic for me because there’s a lot about genetics and ethics in the book, along with some big philosophical questions like Who am I? In this video I explain the genetics behind how it was determined that Dani’s half sister was not actually her half sister. Plus I get into the Who am I question and how it might prompt some exploration in you.

If you are considering at home DNA testing for health, ancestry or any other reason it would behoove you to meet with a genetic counselor first. Find someone here. If you have specific questions about your test results, check out my friend Brianne’s site, Watershed DNA. She’s the absolute expert and my go-to for all of this.

Underwent testing and now have a story like Dani’s to tell? Reach out to me - I’d love to help you find meaning in the experience as you weave your new identify into your life.

I’ll be back next week with my second video on Inheritance .

Me with Dani Shapiro in Reston, VA. (queue heart eye emoji!)

Community is Worth the Search

I was sitting in a circle of about 40 people in the western mountains of Massachusetts. It was summertime with no air conditioning, but my Buffalo blood loved the lack of that frigid, fake air and felt comfortable in a sleeveless sundress. While there were a few women donning the trademark Lululemon insignias, it was mostly folks in label-free yoga wear or t-shirts and shorts. The clothes alone made me feel comfortable being there without knowing a soul. “Come as you are” would be the motto and these people would mean it.

We were instructed to write a one line response to, “Something you know to be true”. Our teacher gave us a beautiful example of the maple trees and smell of sap in Vermont. The first thing I wrote without thinking was, “I know how it feels to stand in a group of moms and feel utterly alone.”

I started to judge myself, thought about writing something else, something more positive, but I felt so at home with this group that I gently reminded myself to stop being critical and I shared it out loud. It was a deep personal truth that I had known for almost a decade, but never voiced to more than my closest circle.

We could analyze why I should or shouldn’t feel this way, but the point I want to convey to you today is that your people are out there, waiting for you to find them. Now that I’ve had time to reflect, I think the reason this particular truth bubbled up was because I was realizing in that moment the contrast of how different it felt to feel at ease with a group.

Maybe you fit in seamlessly with all of the communities you find yourself in. Great! But maybe, you are like me and while there are a ton of nice, friendly people it’s taken a lot of time to find the ones who make you feel good inside and figure out how to act when you don’t. It can be draining.

Which is why it’s so crucial to find the people with whom you feel like you can completely be yourself. It’s one of the reasons I love running this business - the people who enroll in my programs are my people! I’m sure it’s one of the (subconscious) reasons I started Orchid Story in the first place.

If at times you feel like an odd duck, this is me encouraging you to branch out. I know it’s one of those memes that we’ve seen too many times (FInd your tribe!) but maybe that’s because it holds truth. You may have to drive a distance to find them. They may be online. It may be a support group. Keep yourself open to opportunities to find them.

Actively searching for and finding community last year was good for my soul. I’m convinced it helped me build resilience for major life challenges that came soon after. When I think about the writing retreat in the Berkshires I feel full of warmth and connection. Just knowing those people are out in the world makes me feel less resistance and more positivity in my life. I think that’s what it’s all about - the connection. We all need this, require it in order to find contentment and peace. Maybe that’s why you are here, reading this. Let’s keep building this together - a community of people who believe that our stories, no matter how challenging, are our strength.

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.

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. 

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.