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.

The Power of Believing Hard

Our thoughts are incredibly powerful. They run the show. Our thoughts generate feelings which then cause us to act in a certain way. A lot of the time we run around on autopilot; we're not even aware of the thoughts that we have. Then we feel like life is happening to us. But what if we stop to ask ourselves what are the thoughts that are running through our heads? When we get to know those subconscious thoughts we can start to see how they aren't serving us. We can create new thoughts. When we put in the work to really believe in these new thoughts, we have the ability to change our lives. Our brains are neuroplastic, which means we have the ability to literally rewire our minds! 

I first experienced the power of my thoughts controlling my actions back when I was a gymnast. Gymnastics is a great example because it's so easy to see how it works. For many years my main skill on beam was a roundoff backhandspring. (Wondering what in the world that is? Here's a video I found on youtube.) I was terrified, absolutely terrified of doing this trick and I did it for the better part of a decade. You know what made me actually do it and then land it? My thoughts. What do you think happened on days when I thought, this scares me, what if my foot slips on the roundoff? I was unlikely to get the guts to even throw it, let alone land standing on the beam. But on days when I thought, I've done this thing a million times, of course I'm landing it, I would do just that. 

Now, as an adult who only does gymnastics on occasion at the trampoline park (see below...), I'm working on being super intentional with my thoughts. I have a belief that I am going to make a good living and serve with Orchid Story. If I was already living that dream, what would my thoughts be? How would I approach my day? My to do list? The person who coaches me on all of this is Brooke Castillo. She doesn't know me, but I listen to her podcast The Life Coach School and implement all of the tools she teaches. If this idea intrigues you I encourage you to listen to these episodes first. 

Episode #157 Thought Creation
Episode #228 Believing Hard
Episode #248 Superthinking

Far cry from my old days but some things are like riding a bike!

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.

Four Seasons (and Reasons) of Boston

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

 

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

 

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

Fall

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

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

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

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

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. 

ENOUGH (aka boundaries)

I opened the email and scrolled. Here's what you should do. Here's why that's not the right decision. Here's where you should look and who you should talk to. 

When I first started getting these emails from people who do care about me and my family a couple of years ago, I would feel the need to consider and explore all the options presented. I didn't want to overlook something important or fail to consider an option. 

Over the years, I've gotten much more clear about who has a say in the decisions I make for my family. Instead of "Thanks for your input!", I'm turning to "Thanks, but this is a personal decision and we are not looking for outside opinions."

I know some of you reading this today are in the middle of a big decision. If not a decision, perhaps a time of transition or a time of hardship/messiness/distress. Everyone and their mother wants to give you advice about what to do. Does this ring true?

I've made several huge, even life or death decisions for my family, and I'm currently in the middle of another big family decision. I thought I would share what I've learned in the event that you too feel like a sailing ship at the mercy of the waves and weather. 

1. Who's on your team? You know, the decision-making team. It should be people you trust 100% without a single ounce of doubt. All other voices get shut out. Be ruthless. My therapist taught me a visualization where you picture a safe. Open up the safe, put all of those outside opinions in there, close it and LOCK IT.

2. There isn't a right decision. I mean, maybe sometimes there is, but in my experience, there is often not a perfect solution or an obvious right one. You are not allowed to beat yourself up for making the "wrong" decision later. I've been stuck in this trap before and it can lead to dark places that are hard to pull out of. I continue to work on untangling myself from the idea of a right or wrong decision. 

3. Make peace with yourself and let go of the outcome. Even when we do all of the research and have the absolute best of intentions, sometimes it doesn't work out the way we want it to. Sometimes the decisions we make go against the wishes of the person we are making them for. Your job is to look at the absolute biggest picture, the eagle's view, and ask yourself no matter what the outcome is, will I be able to live with this decision?

I hope this brings you a little bit of comfort. I'm over here, in your corner. 

Photo by    Paul Green    on    Unsplash

Photo by Paul Green on Unsplash

This brave person shared her story with me.

Remember the prompt I sent out a few weeks ago: What is one thing that motherhood has taught you this month? Our friend Michelle wrote on the prompt and sent it to me! You guys - this is what I have been asking of you and one of you actually did it - YAY!! Please use Michelle as an example and try it. You don't have to send it to me, but if it's as awesome as I think it will be, I would love to share it. I really hope to add other voices to this newsletter on more of a regular basis. 


Questions by Michelle Small

The other night I saw something that just didn't seem right.  I ask, "What happened today?"  Silence follows.  I ask, "Did this happen at recess?  Who were you with?" She stares at me with her lips as straight as a line and her eyes completely glossed over.  I tell her I love her and I am only trying to help and she holds her hands up to her ears and walks away.  Exhausted, I want to just yell after her “Fine! Forget it!!”  I look down and there is my five year old, laying on the ground incredibly lethargic - an instant sign sickness is coming since he rarely ever is still for more than 20 seconds. 
 
I give my daughter some space for a moment while I try to get my son to get up and put on his pajamas, knowing tomorrow I will likely be taking him to the doctor’s office.  He refuses so I ask him “What hurts?”  “How do you feel?”  “Are you hungry?”  He stretches his arms out and whines, “Momma.  I want momma.”  I give him a hug and then he lays back down.  I let him lay there while I go search for the thermometer and check on my daughter. She is in tears and yells, “Don’t ask me anymore questions!!!  It is too hard to talk about it!!!”  

Reflection on my quest to help them both, I am realizing that asking a bunch of questions - a strategy that always helps me and also my students with their comprehension - is not always helpful.  In motherhood, I am learning, sometimes silence can produce the answers.  Sitting quietly with my son after taking his temperature (he didn’t have one at the time), I was able to check in with my gut feeling to know he needed to go to the doctor (he wound up having a high fever the next morning and an inflamed throat that needed medicine).  Since the blow up with my daughter, I have stopped the constant peppering of questions and wait for her to cue me she is ready to talk.  Amazingly, last night, she asked if she could read to me a part from a book she was reading.  This book is one I actually recommended to her and, for the first time EVER, she took me up on the recommendation, AND now she wants to show me a part she likes and connects with.  I feel like I finally have a win.  

I learn and grow by questioning, but I am learning that isn’t how my kids necessarily learn or grow.  It also does not seem to be a method to helps them to open up to me about what is going on in their lives.  For my kids, the more questions I ask, the more unwilling to share they become.  My daughter gets tense and stressed and my son just flat out ignores me and/or dances around (sometimes with underwear on his head) repeating my question or words in a sing song voice and refusing to answer them (He is feeling better today!).  

It is SO hard for me, but I am learning to look for those opportunities to sit in silence or just side by side, waiting for them to be ready to share.  I won't stop asking questions, but I will start pausing more before I do.  It will help me decide if the questions I am bombarding them with will produce the answers I am hoping for.   

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.

Here I am, In the Airless Room

Her need traps me in a tiny room with no windows, no door, no air. There is no one to come save me and I feel desperate, unlike myself and not the daughter I want to be.

No place can protect me from the airless room. Not when I’m on vacation, eating donuts and coffee out on the porch, admiring the sun rising over the expansive ocean. Not when I’m teaching my students, intent on sharing with them the shapes and symbols to create a family tree.

Even here, secluded away in this picturesque setting with mountains and lake, where I’ve just practiced poetry and taken mindful breaths in Child’s Pose, I’m at risk.

Mere minutes after that zen-induced state, I hear her voice through the phone and I’m snared, caught in the tiny room. “Where are you?” she demands. “I can’t keep track of whether you’re working or with the kids. You and your sister, always traveling around.” I hadn’t told her I was going to a writing retreat, dropping all responsibility, including the responsibility of her, to come here to do this thing for me.

I want to protect this part of myself from her. Or not from her exactly, but from the dementia that seems sometimes so big it is the air I breathe, the food I eat. I’m afraid if I let her see my creativity, the dementia will gobble it up, swallow it whole.

Before this disease stole my mother away, we shared everything. She was my confidante and best friend. When I first became a mother, a year before her diagnosis, I called her from my car every day during my hour-long commute, hysterical. I was distraught that I could not figure out how to be the mom my infant daughter needed. As time stretched on, anxiety crept in, telling me I would never get to that place.

My mom stood by me steadfastly, never wavering in her support, always believing that I had the ability to figure it out. This was the person she had been throughout my entire 30 years on this earth. I wonder now why I can’t access that kind of patience within me, now that the tables have been turned.

Here I am, guiding her foot into her left pant leg, having carefully chosen the pants with no button or zipper, and praying she holds steady on one foot as I crouch on the floor beneath her.

Here I am, hopping up from the table at the restaurant to wipe the glob of salted caramel ice cream from her lap after her spoon missed her mouth. All the while trying to be discreet so as not to draw attention to her disease, and also to act as quickly as possible in the hopes that she doesn’t notice me dabbing her lap because that would mean she would have to acknowledge that help is needed.

Here I am, buckling her seat belt as I drive her to yet another doctor’s appointment, steadying myself to retell the story of eight years of the slow loss of a person. The person who was my person.

Here I am, trying to get out the door of the apartment that we moved her into last year, 400 miles away from the place that she called home, and feeling the well of guilt and anger as she cries because I am leaving, because her world has become so small that she no longer has the cognition to comprehend what it is to have two kids waiting at home, the grocery shopping to do, the lunches to pack.

Here I am, sent to the small, suffocating room by this seemingly innocent question. I could gloss over it by evading and responding to her questions with a question. These days I withhold details and logistics from her, because they cause confusion and aren’t essential. This question gets me though. Isn’t “Where are you?” a timeless question mothers ask of their children?

Doesn’t she have a right to know simply because she is my mother? To evade would be to lie. To the woman who gave me endless amounts of time, energy and love from a well that never dried up, that feels like a deep betrayal. Despite the complete reversal of roles that has transpired over the last few years, I do what’s asked of me and, finally, I tell her where I am.


Published on July 30, 2018 by Rebelle Society.

Summer series: Grief

I’ve thought about, studied and experienced grief for a long time. Here are some seemingly simple universal truths I’ve learned. 

Grief never looks the same from person to person.

Grief does not follow a logical path. 

Grief can come and go.

Grief happens not only when someone dies, but when we experience the loss of a dream, a relationship, an expectation. 

Denial of grief doesn’t always feel like denial and can last a long time. 

Our western society and the people in it do not do the best job of supporting those grieving.

Trauma and grief often go hand in hand.

Grief is a chapter in every human story.

I was introduced to filmmaking duo Lexi and Zach Read of Rhyme & Reason this year through my congenital heart disease community. Their films are breathtaking. I wanted to share this one with you today.

Getting There

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

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

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

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

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

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

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

Get back up.

The past week has been re-learning about rejection and resilience. If you follow me on Instagram, you've had a seat in the front row. It felt at the same time important and insignificant, new and old. I suppose that's how lessons begin to feel when they keep popping up in your life. This re-learning felt important enough to share with you, so I'm taking a bit of a meander from our summer series to share this with you. 

Halfway through 2018, I've sent out 11 pitches. This includes pitches to be a guest on a podcast, to host a workshop, to submit my personal essays or a guest blog, to speak in front of an audience. Out of these, I've had success with five, so a little less than 50%. This is the first time I'm looking at these numbers and that's better odds than I realized. But still six rejections, six no's, six opportunities for me to question what I'm doing, to doubt myself, to wonder who the hell I think I am trying to make it as a writer and business owner.

Last week I decided to work on an essay that had previously been rejected from a print publication. I felt so much resistance simply opening up the document to take a look and see how it could be improved. I distracted myself with email, coffee, calendar, weather and Facebook before I forced myself to sit in the chair and read the darn thing. Maybe it wasn't as spectacular as I recalled but it still rung true. Oh, and also, I had written it in2016. Two years ago and this great piece of my heart was idly sitting here on my laptop. 

It was the date that fueled me - I made a promise to myself to send out another pitch within two days. Then, I closed my laptop and spent the summer day with my kids. 

The next time I checked my email guess what I found? Another rejection. This time for a speaking engagement. I realized I had been holding my breath to some degree waiting for this response. It was a no, but at least I could breathe. Maybe it was the conversation I had with myself the day before - I was able to feel the no for a quick minute and then move on. Gotta get that next pitch out, I told myself. It's all part of the process. 

There are a lot of stories of rejection out there. Harry Potter got rejected 12 times for goodness sake. Sometimes those stories bolster me, other times not. I'm finding that the process, living through it, is my best teacher of rejection and resilience. The more I put myself out there, the more I get rejected. The more I get rejected, the more resilience I build. I can write this to you. I can teach this to you. In order for you to learn it and re-learn it, you may need to go through it yourself. 

Friday morning, the morning of my 39th birthday, I submitted another pitch. I don't know what the outcome will be, but I do know that simply trying again has a power all it's own.

If you have told yourself it's time to try something new but fear has been holding you back, I hope you find some encouragement here. If you need a little more, hit reply and I'll gladly cheerlead for you. 

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