Monday, April 30, 2018

Dear Baby

Dear Baby,

I have thought and thought about what I wanted to say to you for months, but truth be told, I was too scared to write it down - as if writing down your story would make it not real. It seems absolutely unfathomable to me that in just a few weeks I will be holding you in my arms, and not just seeing you move across my abdomen like a trapped alien. You have been a spark in our dreams for so so so long, and despite the fact that you have been doing a headstand on my bladder for weeks, I still don’t quite believe that I am pregnant at all. 

Baby Girl, it’s important to me that you know your story. Every person walking this beautiful earth is a miracle - but you, my dear, have shattered glass ceilings from the womb. 

Baby, my body doesn’t generally work the way we expect it to. Things that happen automatically for most people - breathing, heart rate, digestion, and yes, reproduction, don’t happen automatically for me. By the time you’re old enough to read this, I’m sure this will be obvious to you, when we can’t share most foods and you’ve had to tag along to nine zillion appointments with your Mama.

If I had a dollar for every time I was told it would be clinically impossible for me to have a child, my bank account would look very different. But Baby Girl, I always believed in you. Even when it seemed foolish - in fact, especially when it seemed foolish. I don’t take well to being told what MY body can and cannot do, I just had no idea what it would take to make it happen. 

Baby Girl, you are a miracle over four years in the making. 

I have been kicked out of three different fertility clinics in Virginia - some stringing me along for 6-9 months before deciding that they wouldn’t accept me. I had endless MRIs and blood tests and ultrasounds and hormones. I was sent to perinatologists, cardiologists, endocrinologists and several other “ologists” for approval, only to be told it wasn’t enough. Some blamed my heart, others my stomach, others had truly no rationale at all, and just flat out said no. One group refused to see me for a consult in the first place. One doctor went so far as to say that my chances of getting pregnant were about as likely as the Virgin Mary. 

(To which I’d like to point out that the BVM did, in fact, have a child. Kind of an important one, too. Just saying.)

There are certainly multiple avenues to having a family, and your dad and I considered every last one. We would have walked to the end of the earth and back, but on many levels that wasn’t enough. Possessing not one, but two, genetic mutations with unknown ramifications for life expectancy didn’t exactly sell me as Mother of the Year in the world of adoption and surrogacy. 

I was running out of options, and quickly.

I started contacting larger university hospitals in the area, in hopes that their size and research potential would make me a more desirable patient. Two turned me down from the very first phone call.

As a last ditch effort, I called Johns Hopkins. 

When the administrative assistant asked me to come in for a consult, it was my turn to refuse. My heart couldn’t handle another disappointment. I needed something to grasp onto before I dragged myself down another likely dead-end. So I asked that before I come in for a consult, the doctors know that I had a pacemaker, gastroparesis, extensive neuromuscular obstacles and a non-functioning autonomic nervous system. She took the message and I expected, like always, to receive a “thanks but no thanks” a few days later.

By this point, I had learned that most fertility centers are outpatient centers - meaning they aren’t attached to a hospital, and typically function as their own little community. This is great for 99% of the population. Baby, I’m sure you’ll quickly learn that your mother doesn’t often fit into the mainstream. These centers don’t so much have an EKG machine, let alone the ability to handle a pacemaker. Most, I was told, don’t even have a pulse oximeter on hand. Penelope the Pacemaker and I were just too much to handle.

The next day, I got a return call - I didn’t even hold my breath or get nervous. I knew how this went.
Hopkins also has an outpatient fertility center.
Hopkins Fertility is miles from the main hospital.

But Hopkins Fertility shares that outpatient center with the ophthalmology clinic.

Yes, my dear. You’ve probably already figured it out.
There are FAR more patients with pacemakers having their cataracts done, than there are trying to have babies.
THAT side of the outpatient center had just about every cardiac machine known to man.

Most importantly of all? They were willing to share.

Shout out to every last 80-year-old human with a pacemaker having their cataracts removed. I’d like to personally hug you, make you brownies, and invite you to a heart-healthy dinner for existing. The brightest of gold stars, my friends.

Now this ability to share equipment wasn’t a guarantee - my case had to be brought before the entire department to review and approve. I had to interview with the maternal fetal medicine team. I had to have letters of approval from my cardiologist and endocrinologist. I had to be willing to live close to the hospital if I got pregnant. Above all, I had to understand that unlike The Hunger Games, the odds were most definitely NOT, in my favor.

I did. I knew the odds. But I had to try.

For nearly two years, in a complete veil of secrecy, I drove to Baltimore 4-5 days a week. In 2017 I put 11,590 miles on my car, solely for medical purposes. I gave myself endless shots in my abdomen, took pills, wore patches, and bent over the sink with a grimace while your dad aimed giant needles at the bullseye drawn by the nurses on my hind-end.

My genetic material, along with your dad’s and your grandparents’ was taken to make a protocol to test our embryos. They didn’t have a test kit for my mutations, because no one else exists that has them. We had a 1:8 chance.

After two rounds of egg retrievals, months of hormones, genetic testing and what felt like a direct siphoning of our bank account, we came up with absolutely nothing. Not one genetically clear embryo. Not. A. One.

I did three more rounds of egg retrievals, battled blood clots and ovarian hyper-stimulation syndrome, and retained 15 pounds of fluid in my abdomen, which sounded like a fish bowl when I walked. We sent the embryos off, and we waited.

Throughout these entire four years, your father and I told next to no one about this process. The odds were so small and the stakes so very high. Many nights found me huddled in a dark corner of a parking lot giving myself shots between clients and praying no one walked by the car at that moment. There were endless comments about my weight gain from well-intentioned friends and family who assumed my 15 pounds of jiggly fish bowl meant my stomach was healed and I was eating more. In actuality, that couldn’t have been further from the truth.

For months, I opened every email with trepidation and flinched when the phone rang. I found out after 2 months of waiting that the lab took a summer break for a few weeks, and hadn’t even processed our embryos yet. I avoided hospitalization over the last round of egg retrievals by the slimmest of margins, and my doctors were clear that my body may be waving the white flag.

The stakes could not have been higher.

The odds were 1:8.
We sent FAR more than eight. Enough to have many, many genetically clear embryos.
The call finally came in.

There was one.

That one, baby girl, was you.

After over four years, four fertility clinics, five rounds of anesthesia, hundreds of needles, endless complications, a brand new genetic testing protocol, and a whole lot of hope, we had one. And if it didn’t take, we had none.

By all accounts and research, you are statistically impossible.
But Baby Girl, you took the word impossible, and said I’M POSSIBLE.
You shattered glass ceilings far before you were 5 cells big.

I couldn’t be more proud.

Baby, I wish I could tell you that I will be able to guard your heart and your mind every day of your life. I want to say that you will want for nothing and never feel a moment of self-doubt or sadness, but I know that’s not how this both brutal and beautiful life works. In fact, you will someday learn that we NEED those moments to grow and learn and become the most authentic version of ourselves.

So Baby, I hope you will tuck this letter away somewhere safe, and read it often. I hope that in those moments of loneliness or waning confidence, you will remember just how hard you worked to be here. 

It’s important to me that you know this story - YOUR story. Tomorrow I’ll be 37 weeks pregnant, which means that you, my little miracle, are a full-term baby and I’m pretty sure my heart may just explode with wonder. Your dad and I wrote the prologue, but now the story is yours to write, and I cannot wait to read it.

Come what may, you are WANTED, you are LOVED, and I will ALWAYS believe in you.

All my love,
Your Mom

Tuesday, February 6, 2018

Using Passion to Find Your Purpose



Dear Readers,

In February of 2011, my world was rocked forever by an unexpected diagnosis. Now I know it was only the tip of the iceberg, and 7 years later I want to honor this anniversary with a rarely-told story of how my business, Hatch Health and Happiness came to be. Included below is an excerpt from this month's newsletter, which can also be read here.

May you never stop looking for your passion, my friends. 

Lydia 

In February, we are surrounded by images of passion and thoughts of love – bright red hearts, cupid balloons and chocolate roses are practically overflowing out of every aisle at the grocery store. But the truth is, passion can come in many forms, and in this month’s special edition of the Hatch Health and Happiness newsletter, we are talking about the power of pursuing your passion. In sticking with this theme, I’ve decided to walk you into a more personal and vulnerable chapter of my world that I have rarely spoken about, and how it fueled my personal passion for helping others to heal.

In 2011, I was diagnosed with gastroparesis (among many other things). I was handed a single-sided, over-photocopied piece of paper telling me to eat exclusively chicken broth, Ensure, Carnation Instant Breakfast, and mashed potatoes. That’s it. I remember sitting in the car after the appointment and just staring at this piece of paper that had come from a very reputable doctor whom I respect very much. This is going to be my life? Forever?

It’s hard to believe now, but I did what so many do, and what I am guessing many of my readers can relate to – as ridiculous as it seemed, I followed the doctor’s orders. When you are so sick and desperate to get better, you’ll do or try nearly anything – even when it seems preposterous – because maybe, just maybe, it will work.

So I did. I followed that “diet” with the addition of egg whites and white bread, and shocker, lost 32 pounds in 6 months and was diagnosed as “failure to thrive.” Mere months after receiving that piece of paper, I was lying in a hospital bed following complications from feeding tube surgery. I was blue, freezing, and the new owner of a frontal tail at age 27.



I began the painstaking process of trying to gain weight while eating next to nothing and pumping my body full of cans of grossly processed formula that it rejected with alarming speed. I was supposed to try and eat more, but everything made me sick and nothing at all felt “safe.” Food became a huge source of fear – a stress that only further slowed down my very delayed stomach. I was putting on my pants with safety pins to try to keep them from falling down and was so weak and tired that it was hard to walk up the stairs.

And yet, despite it all, I vividly remember the first time it happened. I was walking down the hall of my school and a parent of a former student greeted me and exclaimed, “WOW! You look fabulous! You should have done this years ago!”

Obviously, she had no idea why I had lost the weight.
Obviously, she NEVER meant to hurt me.
But I was floored. My coworker and I glanced at each other with uneasy smiles.
And the words stuck.

Was this purple-hued, frontal-tailed body what makes me look “fabulous?” 

I knew that I was dangerously underweight. I knew that I was never overweight in the first place. I now knew that “failure to thrive” wasn’t just reserved for babies. But I’m also human. And I had to work hard to swallow that comment down and keep pumping myself with formula, and forcing down food, day in and day out.

And it happened again. And again. And again.

One person went so far as to say that she wished she had gastroparesis so she could lose the weight, too.

I crawled my way back to a healthy weight with daily weigh-ins, food recording, and more feeding tube complications than I can begin to describe (hello exploding feeding tube in the Minnesota airport bathroom…), all the while fighting the demons of the complete loss of my self-confidence and body image. All the while trying to convince myself that food was not “bad” – both for my mind and my body. All the while relearning how and what to eat to maintain my health.

Years later, when I met with a new doctor who was thoroughly flabbergasted by my case, she proclaimed “Well, I guess my best recommendation is to lose 20-30 pounds, so when your muscles continue to weaken you have less to carry around.”

Yep.

Knowing my full medical history, she asked me to lose all of the weight I had worked so hard to gain. And just like that, I was back in the trenches fighting the demons that may always be a part of my story.

I, like many people with allergies, autoimmune disease, and digestive disorders, follow a very regimented diet. In a nutshell, I am a gluten/dairy/soy/legume/mostly grain-free low-residue pescatarian (say THAT five times fast). I follow this plan because it is the lifestyle that I have learned through YEARS of trial and error works best for my body. It isn’t easy to go out to eat and I may never have the luxury of picking up a bite when I’m too tired to cook. I may always be the girl with a lunchbox at bridal showers and birthday parties. I still challenge myself to re-try things every once in a while, to both test the waters and to remind myself that food is meant for nourishment, not harm, and that no matter how sick it makes me feel, that feeling will fade eventually – it’s not forever. I don’t try things because I have to, I try things because I GET to – the choice to heal on my own terms has been, and always will be, mine and mine alone.

My clients will tell you that I adamantly refuse to label something as “good” or “bad” (much to their disappointment). If I had a dollar for every time I’ve heard, “Is this food good or bad?” I’d be a very wealthy woman. Categorizing something that has the potential to nourish our bodies and minds as good or bad is detrimental to our psyche, and it fills us with hugely unnecessary guilt and shame. Even in the case of an allergy or Celiac disease, the offending food isn’t good or bad – it’s just not right for you. What makes one client feel full of light and energy can make another one feel sluggish and terrible – diet and lifestyle are hugely bio-individual.

This is why I do what I do. This is why I’m passionate that my clients learn that food is a good and wonderful thing that we NEED to nourish our bodies and our minds. This is why I’m passionate in teaching my clients with alternative diets about new and exciting ways to not just eat, but to ENJOY food again. I have to remind myself every day that food is not something to fight. I have to remind myself every day that the weight I worked SO hard to put on is not a sign of weakness or failure, but rather a sign of strength. When people no longer compliment me on how I look, I have to remember that it’s because I look healthy – normal even. Like all chronic conditions, my gastroparesis symptoms are infinitely less severe when I do everything I can to manage my stress – and that means facing my demons head-on every day. I cannot run and hide if I want to live a life where I thrive – and help others to do the same. I am passionate, because I have walked this road every step of the way myself, and seen firsthand the damage that an extremely restricted diet can cause. I will walk that road the rest of my life and hope to always passionately help others walk their own road. 

See you on the trail, friends.


  

Monday, October 23, 2017

To Love and Be Loved

I was raised in an interfaith home.
I don’t mention this as an aside. 
I mention it because it is one of the cornerstones of my childhood.

And that’s saying something, as I was lucky enough to have a pretty damn amazing childhood.

Not only are my parents different religions, but they are both very involved in their communities of faith. My mom serves on the vestry at church and my dad is treasurer of the temple. They socialize with each other’s respective faith group and compare notes after Thursday night meetings, often laughing at the similarities of the discussions. 

Several years ago when my mom was in the hospital recovering from surgery, a nurse poked her head in the room and confusedly explained that her rabbi was there for a visit…confusedly, because my mom’s minister had left about five minutes prior.

I had the privilege of growing up in a home where tolerance and respect for our differences didn’t have to be taught - it was a given. It was the only way I knew.

My brother and I were baptized and confirmed in the Episcopal church, where we spent most Sunday mornings, performed in the Christmas pageants and sang in the choir. We also lit the candles at Hannukah, attended services at temple on the High Holy Days and participated in Passover seders long before we were old enough to remember. (In case you were wondering what happens when you give a baby a whole lot of matzah washed down with a whole lot of apple juice - it ain’t good). We showed the same enthusiasm for finding the afikoman that we did for finding our Easter baskets.

It never occurred to me that this was “weird” or “different.” It was all I knew. It was the same for many of my friends. And as such, I didn’t value it for what it was at the time - it was just normal. It was my normal.

Then I went to away to college where I got a harsh dose of reality that quickly showed me that my little interfaith bubble of tolerance and respect was just that - a bubble.

My freshman year I wrote about my interfaith upbringing for an English class, and a classmate told me (rather matter-of-factly, I might add), that I was the spawn of the devil.

That’s right.
Because my parents are different religions.
Obviously.

There were many more experiences like this one. Both in college, grad school, and beyond. Each one opened my eyes further and showed me what a rare gift I have. I am beyond grateful for my interfaith upbringing and the perspective on the world that it has allowed.

And I have to tell you. The world makes my heart hurt a bit right now.
I don’t understand the seemingly ceaseless string of hate and anger and the resulting hurt and suffering, due in large part to an intolerance of our differences.
Regardless of our race, religion, sexual orientation, gender, family structure, favorite color or what you had for dinner last night, we are all human. We have far more in common than we have different. 

We want to love and be loved.
We want to see those who matter the most to us love and be loved.
We want a dry place to lay our head at night. 
We make mistakes.
We grow.
We change.
We learn.
We adjust.
We love.

And through it all, we remain human. 
Unfailingly, imperfectly human.
All of us.

“In writing it down you realize, love is not a tragedy or a failure, but a gift…that nothing in this world is deserved except for love. That love is how you become a person and why.” - John Green Turtles All the Way Down 

Friday, October 13, 2017

Hello, blank page

Hello blank page. 

It has been a long time. 
A really long time. 

To be honest I can't really explain my absence. 
I have a few theories, but I don't know for sure. 

What I do know is that life got so very heavy. 
Not just my life, but our lives. 
Turning on the news has turned into a downright traumatic experience.
All of a sudden, a foot I fractured by walking (mad skills over here), recurrent blood clots (Hasta la vista Carlos the Clot #1-6) and having myofascial release therapy UP MY NOSE seem like worthless minutiae. 

(Ok maybe not the nose story. I mean, someone put their ENTIRE finger up my nose. On purpose. So there’s that.)

It all just feels a bit much.
Highly sensitive creature that I am, my heart feels like it doubled in weight.
And I stopped writing.
It's not that I didn't try - I have countless starts in random notes and post-its - but mostly I sat paralyzed staring at a blank screen.

What could I possibly say that would actually matter?

I want it to matter.
And feelings are scary. 
Writing about them makes them real.
Real feels scary these days.
I far prefer the world of unicorns and avocado toast raining from the sky.

(Side note - how convenient would that horn be for spearing slices of toast?! GENIUS).

But, here we are. Not a unicorn in sight.
I know I want to write, that I need to write. 
I have a lot to say, when I'm ready.

It’s time to feel it all.
It’s time to write it all.

Hello, blank page.

I’ve missed you, but I'll be back soon. 

Sunday, May 7, 2017

Addressing My Elephant

I’d like to start by addressing the elephant in the room:
I’m ashamed to write this post.

Mortified, really. 

I thought about not writing it at all.
Or writing it but not posting it.
But, that felt fake and false and a little bit like lying.

When I started writing this blog, so many years ago, I committed to sharing the truth of my life - and that meant not just the good parts or the funny parts. That meant all of it.

So here we are.
Deep breath.

Friends, this year has been hard. 
Quite possibly the hardest of my 34 years of life. 
And I have been racking my brain trying to figure out why. I just needed to understand. I like to fix things. I thought if I could identify what was going on, I could fix it. 
Turns out that doesn’t work so well. 

Nothing has happened.
I don’t have one event or specific life experience to blame.
So I told myself to buck up and get over it. I tried to ignore this gnawing, unfamiliar emotion that kept bubbling to the surface, hoping that if I waited long enough it would just go away. 

It didn’t.
And one day while driving to my 9 millionth appointment, exhausted and twisting in pain, it dawned on me like a punch in the gut.
I finally understood. 

I’m angry.
I’m so very, deeply angry.

I’m angry that I’m 34 years old, childless and broke.
I’m angry that my husband is living this life because of ME.
I’m angry that my family and my husband's family have the burden of…well…me.
I’m furious that when people ask me what I’ve been up to, waiting to hear about hobbies or trips or projects, my answer is that I’ve spent the past 6 months getting rid of a collection of blood clots. 
(Hasta la vista Carlos the Clot Sr, Jr. and III…please don’t send any more descendants.)
I’m angry that life has forced me to leave the job and community I loved, and now I work by myself day after day after day. I’m a pack animal, friends. I’m not a lone wolf.
I’m angry that I spend nearly every last ounce of my energy just getting through the monotony of the day, leaving next to nothing for anything remotely looking like fun or adventure.

In a few weeks, I’ll watch my husband and my friends run a half marathon that I ran years ago, and I’ll cheer my face off. I’ll hand off water bottles and yell encouragement and mean every word. But I won’t be running with them, I’ll be standing alone on the sidelines. And I hate that.

More than anything, I’m so angry that I’m angry. I’m ashamed to be angry while surrounded by so much goodness and love and unwavering support in my life. I feel like a giant hypocrite to have so much for which I am so incredibly grateful, and yet to boil beneath the surface. 

I know anger is a very normal and expected part of grief, and I would be lying if I said I hadn’t had flitting moments of anger over the years. But I can honestly say that I’ve never felt like this. This is the part of chronic, progressive illness that you don’t hear about. Where you work and work and work to be as healthy as humanly possible, and yet the realization that you may never do more than simply get through the day for the rest of your life falls over you like the heaviest of veils. 

Anger makes me uncomfortable. It always has. 
To say I am conflict-averse, is to confirm that the Pope is, in fact, Catholic. 

I’m not an angry person, I want desperately to jump out of my own skin and sprint from the scene of the jump.
I want to shed this layer of lonely ugliness. 
But I can’t.
I’m stuck here, alone with my anger.
Always, always alone.
And it won’t go away.

I have pondered what to do. 
I cannot change what is, no matter how desperately I want to.
So what can I change? My attitude?
Can I smiley face and sticker and cupcake my way out of anger?
No, I don’t think that’s how it works.

PSA: Despite the current state of affairs in the hot mess that lies beneath my skull, my affinity for all things cupcakes and puppies and horses and avocados and mountains and The Ellen Show, has not waned. Fear not.

So…what do I do?
If I cannot change my life and I cannot change my attitude and I cannot change who I am as a person…what happens then?
What do I need to fix?
What CAN I fix?
What if I can’t fix…anything?
What if I’m just…angry?
What then?
Do I just need to be...angry?
Can I be both angry and grateful? Can I continue to take notice of the multitude of goodness that surrounds me, all while steaming in frustration?

Maybe, just maybe, if rather than hiding from it, if I ride in the front seat of this anger, I’ll discover what I have been so desperately searching for all along- something to pull me out of the pool and stop treading water. Something to open up a life that is more than “just okay.” I’ve written about this a lot over the last year, each time convinced that I was ready to make and be the change. This anger is a roadblock that I didn’t expect, but it is one I must endure, and may just teach me the most meaningful lesson of all of this - that it’s okay to not be okay.

But...

I’m not there yet.
I’m still angry.
I’m still angry that I’m angry.
I’m still ashamed.
But I’ll persist, until someday I’m not.

I’ll persist because at the end of the day, that is my only option. 
I believe there is more out there for me - more than just a life of solitary monotony - and maybe I NEED to be both grateful and angry in order to move forward. 

I can be angry. I can be downright furious. But, I can persist.

So I will.


Tuesday, January 24, 2017

The Next Chapter

Hello, 2017.
Hard to believe you're here.
Not going to lie, I am more wary of what you have to offer than I have ever been in my entire life.
And yet...here we are.

I have been trying to write out my thoughts for weeks now - months really, but it has felt like the most intense game of "whack-a-mole," throwing a sentence at the page here and there in hopes of them all magically coming together. As if I was playing the most epic game of Mad Libs.

Recently, I finally found time to sit down and really write...only because I was sidelined with the flu and missing a much anticipated life-planning workshop.

The irony is not lost on me.

The end of 2016 took a turn for the chaotic, but the break in writing is bigger than that. Something broke last year. Not a bone that needs time to mend or a wound that can be fixed with stitches. There wasn't one sudden accident or moment of klutzy behavior that turned into a medical bill. This break was a slow, gradual splintering. So snail-like, in fact, that it took me quite some time to figure out it was broken in the first place. Like fragile petals of a complex rose, the pieces fell off one by one, until all of a sudden, it was no longer a rose.

As I draw closer to the 7 year anniversary of my driven, energetic self taking an unexpected turn from the race course to the couch, I think my petals may have all but fallen off.

And I feel bare, confused, and unexpectedly fragile.

As the years have soldiered on, it has become harder and harder to tread water. After a while, my legs just can't egg-beater kick in the same place much longer - they are tired of spinning in circles, all while never moving an inch, and looking at the same thing day after day after day after day.

For whatever reason, be it age, or the state of the country, or the circling of the cosmos (cough cough, probably the state of the country), 2016 was a year of thought. Deep, honest, at times soul-crushing introspection, that brought my typically even-keeled self to tears.

I'm not a crier, so this was more than a little bewildering to me, but I'm learning that these weird rivulets of water that sporadically appear on my cheeks can be cathartic, and even revealing.

Turns out my tears are not for what I have lost, rather they are because I AM lost. Somewhere in the midst of being a medical and genetic anomaly, my identity drifted further and further away from my desperately kicking legs.

And friends, after much cogitation, and yes, perhaps a few tears, I think it's time to stop treading water and get out of the damn pool.

Like a shattered mug, you can only glue it together so many times before it changes into a pen holder on your desk. The pieces are the same, but it serves a new purpose. It started as one thing, but surprisingly changed to something else.

I am not the same person I was 7 years ago.
I've changed.
I've changed in ways I never could have imagined or expected.
The elements of life that were my defining characteristics have spent years on the hold list, and I think it's time to move them into the archives and check out something new.

Someone recently asked me what I liked to do for fun. I froze. As I stammered out something probably incomprehensible, my mind was spinning with the fact that I have NO idea how to answer that question.

Uhhhh, cook food that I don't eat? Attend my husband and friends' races and events? Add items to the grocery list while wearing athlesiure??

This narrative is mine. I didn't choose it, but I get to write it, and treading water with the same stagnant hopes and dreams is a pretty boring story.

Several years ago, during a particularly challenging time medically, a friend gave me a bracelet that reads "Be Brave." While deeply appreciated and thoughtful, the truth is that getting through medical times doesn't seem brave to me. If I have to have surgery, I do it and follow the necessary steps to recover. If I end up sidelined by a new malfunctioning body part, I take time to adapt and heal the best I can. It's not brave, it's just doing what needs to be done, even when it's not easy. I can follow a do and don't list like my life depends on it...because it does.

But getting out of the pool and facing the fact that I am never going back to the life I left, in any way, shape, or form? Standing up for what I believe in for myself and for my country? Looking at the world through tired lenses, and realizing that if I want change, it has to come from me?

That, my friends, is hard. I need a whole lot of brave there.

My furry sidekick recently hurt his toe, so much so that he couldn't put any weight on it for a while. He never cried or sulked, he merely switched from running around on 4 paws to running around on 3. He didn't give a second thought to resuming his life without the use of one of his toes, he just got up and kept on living (all while his parents frantically tried to keep him "quiet.") Who knew a 7-month-old puppy could be so wise?

I don't know what comes next, for me or for my country, but I know that it's up to me to find out. The choice is, and always has been, mine. It's time to stop waiting and time to start doing. If I want to find a new passion, I must be passionate in my pursuit to find it.

(Though let's be clear that underwater basketweaving better be done in warm water or I'm out of there.)

I know that if I want my world to be light, I have to be the light, and bring the light, and share the light. I cannot expect it to come to me. Even when it's hard.

Especially when it's hard.

It's time to get out of the pool, friends.
I've got another chapter to write.

Be the light.
Be brave.

Monday, October 3, 2016

The In-Between

Hello, blank page. 

I know, it's been awhile. 
I have both desperately craved and strictly avoided you, knowing I needed to write and terrified of what may come out. 

What if it's all the same? What do I do if I come here to write only to acknowledge that nothing has changed at all?

What happens then?

Fall used to mean new shoes and pencils and shiny, happy students.
Somehow it has morphed into surprise surgeries, never ending GI treatments, and heart-lurching loneliness...and every year, it surprises me. 
What if the world knew that while there are people frolicking through apple orchards in flannel shirts and happily gulping down pumpkin-spice-everything with wild abandon, all I can think is "please please let's just get this over with before something else breaks?"

What if they knew that every year is harder, not easier, and that with every year of lasting permanence, it becomes more difficult and bitter to swallow? 

And why, why, WHY for the love of cinnamon buns and ponies, can't I just get over it?

It's embarrassing. 

Every year as the march towards September soldiers on, the dread settles upon me like a lead blanket. I am unable to hold my generally emotionally-stable self together. I don't even know this person, and I certainly don’t like her.

What if people knew? What would they think of me? 

What if they knew that when they ask how I am and I say that I'm okay, I really mean that I'm not really good, but I'm certainly not bad and I'm just stuck, forever stuck, in the in-between of "just okay?"

What if I am always here? In this place where some days I can't get off the couch and other days I go for a walk in the sunshine, and some days I am stuck in the bathroom and others I read a book and miraculously remember it, and most days I hold myself together just long enough to get to every item on the calendar before I fall apart into a heap. 

What if…that’s it?

What if being okay is all there is for me?

Can I be happy in the okay? Can I be content to just keep swimming and hold my head above water?
Is being just okay…okay?

Having an invisible chronic illness is like living your life permanently on the sidelines. You look fine, you act fine, you generally show up to normal life-in-your-30’s events, but thats’s all - you’re just kinda there. You have little to talk about, not much to contribute, no race to run - or at the very least, that's what it feels like.

It's like being benched at the game you have waited your whole life to play. 

For six long years I have swum upstream against the ever-changing current of the in-between, trying desperately to get around the river bend. 

(Note to self: just how DID Pocahontas do it?)

I have watched the world continue to turn around me, as I remain in one place, one foot stuck in the mud as everyone goes about their lives.

The doors shut, the cars drive away, the bus rumbles down the street, and then…nothing. The stark, slap you in the face, deafening silence.
Nothing screams louder than silence.

What if people knew that I both need and am petrified of silence? 
When it is silent, there is nothing to crowd out the blaring cacophony of my mind.

In August, Mr. RestartingMyHardDrive and I welcomed our first puppy. 
(Yes you read that right. The same puppy I have been working on for all ELEVEN years of our relationship…and they say New Englanders are the stubborn ones.)


Alfie is a ball of fluffy happiness, and the most loyal and constantly exuberant companion. He gets me out of the house and into the world, and is the very best little fur-child (even when he is chewing on the wall...and my shoes...and the file cabinet...). He is exhausting and wonderful and makes us laugh every day.

So…why do I still feel…behind?
Can I be both intensely grateful for the incredible gifts of my life, and at the same time…just okay?

(No but really, he will stop chewing someday...right?)

It feels so complicated to be simultaneously the person who shoves iPhone photos of her dog in peoples’ faces without them asking (sorrynotsorry) and the person who eats lunch alone everyday, reading a cooking magazine propped up on a cookbook stand to fill the empty void. 

Am I just one big paradox?

Motivated but distracted.
Restless but exhausted.
Together but alone.
Head in the stars, but feet stuck in the mud.

You can see now, semi-blank page, why I’ve stayed away.
I have so many questions, and so few answers. 

Maybe. 

Do you think my lack of answers, is the answer?
Is it that I just need to keep asking these questions, and swimming swimming swimming in search of more than “just okay?”
Aren't I far too much of a dreamer to believe that this is it, that I just stay here in the same spot and let everything pass me by?

And furthermore, don’t I get to choose?
Is this all a grand invitation from the universe to face down my demons and dig deeper and allow the next phase of my life to show up?

What if I put it out there into the universe that I'm ready for a change??
What would happen?

I know…I KNOW.
The relentless monkey chatter of my mind has extensive opinions on the matter.
But this choice is mine, and does not belong to those monkeys. I owe nothing to the monkeys. 
Aren't I wasting the gift of life if I believe and accept that “just okay” is it?

I am not willing to wave the white flag.
I am not willing to forever and ever be “just okay.”

I know...I think I've always known. It just feels awfully bare and vulnerable out there in the open.

It may be days and it may be years and it may take many more pumpkin-spice themed Octobers of deafening silence.
But when the time is right, I will be here on the sidelines. I will be ready. 

In the meantime, I guess I’ll keep swimming.