In short, my body broke in 2011. My hard drive crashed, my wires got crossed, my crayon box lost the primary colors...you get the idea. This blog started as the story of my trip to the Mayo Clinic and how I planned on regaining my life in 2012. Turns out I did regain my life, but not exactly as I planned. This is the story of medical drama, heartbreak, much laughter, and an abundance of gratitude.
I’d like to start by addressing the elephant in the room:
I’m ashamed to write this post.
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.
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.
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 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?
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.
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 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.
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?
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.
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.
Have you ever had one of those moments where all you can do is wonder why no one is with you to see what you're seeing?
Ya know, the kind where you look left…look right…and expect to find out that my girl Ellen Degeneres is watching you on a hidden camera?
Representing the rare and unusual, I experience these moments A LOT.
For example, when the 94823084th doctor looks at you with a bewildered “I’ve never seen THAT before!” expecting you to be a) shocked and b) somewhat alarmed, and all you can think is “I wonder if I have time to grill my sweet potato for dinner tonight?”
Over the years I have shared nearly all of the “Billboard Top 25” ridiculous moments, but...I have a confession to make.
There is one moment…that may in fact be the very tippy-top of the list, that I didn’t share.
One test from my good ol’ 2012 pilgrimage to Mayo, that I decided was just a wee bit too ridiculous to share.
(Except to my father, who laughed so hard in the waiting room, I felt the need to confirm the presence of his inhaler in his briefcase.)
I didn’t feel the need to share it, that is, until 4 years later, the test that I thought I would never ever ever ever have to think of again, was ordered by my doctor.
Let me assure you - I initially said no.
In fact, I believe I laughed as if it was a joke.
But my new doctor promised it would be super helpful! and very diagnostic! and the start to better food consumption!
And let’s be honest, the promise of eating more than 10 things is like dangling a tennis ball in front of a retriever - absolutely impossible to ignore.
Now before we dive in further, I feel the need to provide a disclaimer.
People…I have extensive gastrointestinal dysmotility. In other words, my GI system is all kinds of dysfunctional from the very top to the very bottom. Over the years I have met with more doctors and had more GI tests than I can even begin to count, and as with most commonly repeated life events, what once seemed weird quickly becomes just another day.
I say this, because today I’m introducing you to the Anorectal Manometry…and that alone should give you a hint enough to know that if bathroom humor and being introduced to the inner workings of my colon is too much for you, allow me to suggest that you close the computer, grab a green juice and go for a stroll. No questions asked.
As I was saying.
So, the anorectal manometry. So uncommon and unheard of, that Microsoft Word continues to insist that I am trying to spell something else.
As with most tests in the GI department, there is an element of preparation. This delightful little adventure involves not 1, but 2 enemas two hours prior to the test.
Nothing says “good morning!” quite like a double enema at 4:45 AM, my friends. NOTHING. (Also notable, you can save a full dollar by purchasing the enema twin pack at Target!)
When you endure a GI test for the first time, you are blissfully unaware. You head back into the surgical suite completely in the dark of just how this whole transaction will occur.
The second time, however? You seriously question the sanity of the extremely chipper nurse who comes to retrieve you from the waiting room.
(The first time I had this test, my extremely attractive male nurse told me he would step outside while I dropped my pants. Oh how kind to step out of the room while I take off my yoga pants...and then come back into the room to very closely examine my bowel habits...)
After changing into a gown, and hearing the requisite “you’re too young to have a pacemaker!” and “but you look so healthy!” the show began when the nurse kindly instructed me to hold onto the bed so she could check my anatomy.
Friends, when one is instructed to brace with the bed, one should guess the check will involve more than “1 cheek, 2 cheek, hole, got it!”
All while telling me about her darling grandchild, a nurse wearing bright red lipstick checked my INTERNAL anatomy. So glad she made herself up for the occasion.
While desperately trying to distract myself from the situation DOWN THERE, I decide it’s a genius idea to take stock of the items on the prep tray.
This just in: TERRIBLE IDEA.
The items include, but are not limited to: 1 eighteen inch set of tubing in plastic wrap, 1 bag of balloons, and 1 extra large tube of KY Jelly.
[Braces bed with more fortitude]
Shortly thereafter, aforementioned 18 inch tube goes exactly where you are guessing it does. AND THEY LEAVE IT THERE.
At this point, my red lipstick friend switches spots with another poor soul who has been relegated to the world of the anorectal manometry….who proceeds to lead me in a long series of repetitions of “SQUEEZE 2 3 4 5!” and “PUSH 2 3 4 5!”
Guys. I’m doing calisthenics with my RECTUM.
At this point, I again dare to look around for distraction and notice that my red-lipstick pal has her shiny gold-cased phone out, all aimed in the direction of my extraordinarily bare bottom half. So I do the completely logical thing and assume that she is taking photos…until I realize she has the stopwatch feature up and is using her gold-clad telephone to time my rectal calisthenics. I’m not sure which is more jarring.
At this point, you’re probably thinking “Ok, it has to be almost over, this can’t possibly get worse!” and I will admit, I was right there with you the first time.
Just when you are thinking they must be wrapping up and about to send me on my merry way, they instead whip out a giant syringe full of saline. Remember that balloon from my perusal of the prep tray?
Before I can even begin to mentally prepare myself for the next phase of this life altering experience, 18 inches of tubing is removed, a balloon is attached to the bottom, and 18 inches is reinserted. Now I feel it’s important to note that I requested a funfetti balloon. If I am going to produce a balloon from the inner reaches of my colon, it had better say “Congratulations” and be full of confetti. I do not think this is too much to ask.
I was denied.
Alas, the balloon was yellow. Lame.
Once the decidedly non-confetti containing balloon is no longer on the outside of my body, the previously mentioned syringe of saline decides to join the colon party and they fill up the balloon.
They fill up a balloon. Inside my intestine. And then attach a rubber tube to it. And tie on a weight.
I am, at this point, instructed to head to the attached bathroom for a more “natural experience.” I am now completely naked, with a flimsy hospital gown half covering the front of my body and about 12 inches of rubber tubing and a weight hanging out of my backside, attempting to walk across the room to the bathroom.
Never. Looked. Better.
I am firmly instructed to drop said weight into the toilet, sit, and let them know when I’m “in position.”
After I nervously share that I am, in fact, in position, three words are yelled through the bathroom door:
At this point, my main objective is push out the balloon. That is attached to a weighted tail. In my rectum.
It is absolutely crucial that I make sure you understand that this is a TIMED test. For a full two minutes, likely timed on the shiny gold phone, my two newest pals are directly outside of the bathroom door yelling “GO LYDIA!!!!,” “PUSH!!!!! PUSH!!!!!!” and “YOU CAN DO IT!!!!!!”
People. I had balloon-pooping cheerleaders.
If only I brought pom-poms.
I am now sitting on a toilet at Hopkins, mostly naked, with a weighted tail hanging out of me, literally sweating and red in the face when I hear a dejected “times up” from outside the door.
Not only did someone stick a yellow balloon into my rectum, but that yellow balloon is now STUCK in my rectum. And seeing as the yellow balloon is attached to a weighted tail that ends in the toilet, I am now also STUCK on the toilet.
Apparently my bestest red-lipstick-clad pal drew the short straw of opening the door, where she then directed me to lean forward while she “retrieved” the not at all congratulatory balloon. While untying (yes, untying) the balloon inside of my backside, I receive a muffled, “Well I guess you know you failed that part!”
Got it, thanks.
Several weeks later, when I had a follow-up appointment with my doctor (who, I may remind you, had promised me all things diagnostic! and helpful! and more food!) I was quite thrilled to head to the patient rooms, and NOT the surgical suite…but I sat with tightly crossed legs, just in case.
I listened as the doctor started reading off the different numbers and pressure readings and speed of my rectal calisthenics, waiting patiently for her to mention when I can go dive into some chips and salsa, and instead I hear;
“Well, what's interesting is we don’t really know what this means!”
Interesting. Is that so.
In other news, while filling out the payment portion of my not one, not two, but THREE day stool test (another part of the super helpful! diagnostic! more food! plan) I notice the cost of the test is about 6 times what I was told it would be. Thinking there must be a mistake, I call the diagnostic company to inquire about the cost of the three day "box o' my bowels" residing behind the spinach in my refrigerator.
A very kind, Southern woman patiently explains to me that my insurance company decided not to cover the test...but if I’m unable to pay the full price at this time, I can place it on layaway!
Life took a turn for the crazy, but here we are yet again.
After the big genetic showdown, my plan was to take a few weeks away from the medical world to just be. There are a lot of unknowns and "to be determineds" and I wanted some time to let it all soak in. Genetic testing was an ultra-marathon, certainly not a sprint, and I was ready for that glorious post-race recovery.
Rather than soaking in epsom salt baths and enjoying a luxurious massage, my immune system took that whole "time away" thing a wee bit too literally, and took one heck of a vacation over the past 3+ months. Evidently I need to be more specific with how I plan on spending my "off" time.
A week before Christmas I picked up a stomach bug, followed a week later by an upper and lower respiratory tract infection, that turned into pneumonia a few weeks later, which then caused me to break a rib, which was capped off 2 weeks later with a bulging disc in my lower back.
Then, just when I thought I was coming up for air (and could actually walk without looking like a lame emphysemic penguin), my nonexistent thyroid levels took a swift and rapid trip south, causing my endocrinologist to nearly fall off his chair with a glance at my lab report, and inquire "how on earth did you do that?!"
(Which, by the way, is the 2nd time in 2 weeks I've been asked that question by a doctor...does this mean I get a refund on my copay?)
Shortly after the Ghost of Thyroid Past vigorously stirred the pot, I added two more rounds of sinus infections (or rather, never got rid of the first one), which brings us to this week, when I got a call to tell me that my doctor had called in my protocol to the pharmacy.
"Oh...protocol for what?"
[awkward long pause]
"Didn't someone call you with your test results?"
"Nope, that's why I've been leaving daily messages."
"Oh...one moment please..."
[second awkward long pause]
"So...normally the doctor would call you, but...you have a rather extensive internal staph infection."
(And for all of you mentally calculating how long it has been since you've been in close proximity to someone with a giant staph infection, I have been assured by both medical professionals and Dr. Google that I'm not contagious. Just full of my very own set of antibiotic resistant bacteria. No big deal.)
People. I'm tired.
(And full of bugs. Just saying.)
I really wanted to write a post about how I'm back in action! and things are great! and I'm taking 2016 by storm! but instead it seems that 2016 IS a storm. And maybe that's why it has taken me so long to come back to my blog, because maybe sub-consciously I wanted to wait until I felt like life was stable.
This just in: Life ain't stable.
Genius that I am, I thought the great immune system vacay was a perfect time to a) release a brand new makeover of my company's website (check it out!) and b) buy our first home. Just call me Einstein.
Through the extreme generosity of our families, Mr. Restarting My Hard Drive and I recently made our 6th move in 10 years into a townhouse of our very own. It has been a whirlwind of excitement and packing and boxes and unpacking and more boxes as we settle in and make it our home. And I'm not sure why this made sense in my head, but somehow I had this image of moving into our new home, and turning 33, and bursting with health and vitality.
It wasn't logical, I know. But I'm human, and a dreamer...so ya know, not the best combination in the logic department.
I had this image of being superwoman and whipping both my business and new house into shape, all while exuding energy and strength. Instead I'm full of antibiotic-resistant bugs, and had to rely almost entirely on friends and family to move my belongings, so as not to bulge a disc or break a bone or pass out in a heap. Not exactly on point with the illogical dream plan.
It's like listening to the same album over and over again, and never getting past the 3rd song.
Over the years I have written very little about the invisible behemoth of shame that resides on my shoulders. I suppose I carry it with me wherever I go, but somehow I've always felt like writing about it would give it more worth than it was due, so I've kept mostly mum. However, nothing unleashes the beast more than digging through all your belongings, and unearthing a lifetime of memories. And trust me, I so wish it didn't. I often talk to my clients about shedding what doesn't serve them, and like many people, I know it is easier to share advice than follow it yourself. I believe, and have written extensively about, the fact that we all have a choice in how we live our lives. We cannot decide what happens to us, but we can always decide how we respond. But, I think shame falls into a bit of a gray area in this department - not clearly defined by chance or choice, which is why it has been on my mind lately. I don't want to be ashamed of the boxes of unused running clothes, or dust-collecting children's books. I don't want to feel a twinge of pain and embarrassment every time I get a medical bill in the mail, or when people ask me when I'm having kids. I don't want to constantly think about the emotional and financial burden I have been to my husband and family. But I do. Every day. And I know it doesn't serve me. I am under no illusion that making some grand blog-post proclamation that I am shedding my skin of shame will actually make it happen, but I think there is something very powerful in sharing your intentions. I can't start off my 33rd year in a new home with health and vitality, but I can certainly decide to start it with a renewed focus on exuberance and self-worth, despite the never-ending roller coaster of my immune system. And that is exactly what I plan to do. So no - life most certainly is not stable, and you know what? It may never be. I raise questions and provoke befuddled looks from the medical community and challenge every pharmacist I've ever met. I look fairly normal, but am put together with a lot of stitches, glue, and robotic parts. I'm not living the life I planned, but I am bound and so very determined to live a life that has purpose - no matter the number of infections or breaks or bulging discs. This is who I am. Hello, world.
I have always wondered what the moment would be like.
When after years of unanswered questions, false hope, and dead-ends, I’d have a definitive diagnosis.
I wondered what emotion I would feel first.
Probably a little bit of everything, I guess.
Most of all, I knew it wouldn’t be easy.
If the diagnosis was going to be easy, it would have happened years, volumes of blood, and 23860948 different medical institutions ago.
What I didn’t know, is if I’d ever have that moment.
In all of the years and tests and evolving diagnoses and hail-mary treatments, there is only one thing that never changed.
I have never wavered in my belief that my medical obstacles had a cause.
I have wavered in many things, but not the proverbial connection of my dots.
I don’t believe our bodies break, in the way that mine has, for no reason.
I don’t believe that my 27 separate diagnoses are not connected.
I never have.
And I’ve been waiting. And learning. And researching. And waiting some more, to connect the dots.
I knew there was a good possibility I would wait for the rest of my life. A nearly complete puzzle just missing that very last piece.
(Even after you've looked under the bed, between the sofa cushions, and even in the trash.)
But, an appointment in April changed everything.
Approximately 37 seconds after meeting my new immunologist, he referred me for whole exome sequencing. I had asked for this testing many times over the last few years, but the medical consensus was that it wasn't warranted. This doctor, however, shared my curiosity, and even more fortunately, he happens to be married to the president and head physician of the Rare Disease Clinic.
A few weeks later, I parted ways with 25 vials of my blood, and had the most bizarre physical of my life. In a genetic evaluation, you are scrutinized on a whole new level - every limb was measured, every single freckle and mole had to be counted, and every single appendage had to be examined, down to the size and shape of my nostrils. (Shaped like a bean...ya know, just in case you were wondering.)
They watch you move.
They watch you talk.
And then you wait.
Genetic testing is most certainly an ultra-marathon, not a sprint.
I didn’t blog about this process, but not because I didn’t want to.
(Trust me, when your doctor is 5 feet tall and has to measure your height and wingspan while you are 6 feet tall and completely stark naked, there is a LOT of blog-worthy material.)
I didn’t blog because I just couldn’t.
As much as I told myself not to get my hopes up, I’m human.
The thought of having to come back empty-handed again was just too much to swallow.
Then, a few weeks ago, I got the call to come in for results disclosure. After unsuccessfully offering to be there in 5 minutes with cookies, wine, and possibly a pony, I weaseled my way into finding out over the phone that they had found something. (Weaseling possibly exacerbated by the fact that they called me…and THEN told me that the doctor was away for 3 weeks. You're kidding me, right?)
Three weeks later, it was everything and nothing like I had imagined. I sat on the couch, long legs tightly crossed and knocking into my husband's equally long limbs. I had my moose notebook out, and was anxiously playing with my purple pen. The doctor sat across from me, stack of papers in her hand. The genetic counselor sat at the table with my 8-inch thick file.
I had pictured all of this. I had expected it.
What I hadn't expected, were the words that followed.
The words that at first computed as sentences quickly faded to a blur, as I scrambled to keep up.
Never been seen before.
It comes as no surprise that my diagnosis is rare…but I never imagined it would be quite this rare.
I have not one, but two, likely spontaneous genetic mutations that have never been seen before.
In 7.3 billion people, there is literally only one of me.
(Or at least, of the population with access to genetic testing, anyway).
Both are progressive. Both are untreatable. Both are adult-onset disorders that appear in the 3rd decade.
Over-achiever that I am, mine showed up a bit early. Gold star for me?
The first mutation is a type of channelopothy. You may recall from high school chemistry, the experiment where you placed salt in water and then were able to conduct electricity. In our bodies, sodium and several other electrolytes are responsible for the the voltage that stimulates cells to perform their function. One type of my sodium channels does not conduct a current. Essentially, all of the parts are there, but the cord isn’t plugged in. This genetic mutation explains, among other things, the dysfunction of my autonomic nervous system - everything in your body that is supposed to happen automatically (heart rate, digestion, blood pressure, temperature regulation, etc.) Voltage-gated sodium channels are responsible for the rising of action in cells. If the voltage doesn’t occur, neither does the action.
The second mutation affects my muscles. Fibrillin and Actin are proteins in our bodies that are supposed to bind to one another to maintain the structure of the cell, and further the process of myogenesis (the creation of new muscle tissue). My Fibrillin does not function as it should, causing myofibrillar and/or distal myopathy - aka my muscle fibers look all kinds of funky and are weakening. Over time, my muscles will become weaker and weaker, likely including my heart and lungs.
On the plus side, now that I'm a mutant, I have a built-in Halloween costume for life.
To say that this is a lot to digest, may be the understatement of the century (especially given that I don't actually digest anything...)
For many days, I walked around in a blur, simply getting myself to the next thing on my calendar. I went through the motions of daily life, finding myself staring into space at my desk with no recollection as to why I was there.
I tried to wrap my head around what this truly means for my future. My dreams. My husband, and my family.
Perhaps the most bizarre of all is the lack of actionable steps. I have always been a well-researched patient, diving head first into each new obstacle until I understood it enough to explain it myself. In this case, there is nothing to research. All I can do is learn how the genes are supposed to function and work backwards. I share one mutation with a person in France, but nobody has the other one and nobody has both. An orphan disease is defined as fewer than 200,000 reported cases. In this situation, it's a party of one.
(Now accepting submissions for the official "Name My Mutations" contest.)
I had told myself that I wouldn’t write a blog post until I could breathe deep, fully embrace my latest new normal, and move forward.
So for the past 9 days, I continued on with the motions of life, staying quiet and doing my best to appear normal.
But, I soon realized, that was an awfully lonely place to be.
There is no doubt in my mind that I will be fine. After all, I have made defying odds a pastime of mine, and I have quite a lot for which I'm extremely grateful. I intend to embrace this beautifully unexpected life that lies before me - and what a glorious, front-seat-of-the-rollercoaster adventure it will be.
Someday soon I will realize that I’m okay.
Just maybe not today.
And perhaps the biggest challenge of all, is accepting that this is okay. My muscles and vision of my future may be weak, but it does not make me weak.
It’s okay that I’m not feeling like myself right now.
It’s okay that I cycle through every emotion imaginable in a 5 minute period.
I'm right where I need to be, and tomorrow, I'll try again.
After all, sometimes even rare robotic mutants need a break.
I had almost finished a post when I heard the song.
My musical idol, Sara Bareilles, recently composed a new musical, "Waitress," (think stage adaptation of the movie with Keri Russell) and the first single from the musical was just released.
"She Used to Be Mine” stopped the air in my lungs.
I listened, twice.
Then one more time.
Then, without another thought, I selected all, and hit delete.
I had been trying to write about Septembers. To explain my absence from writing, and how my heart triples in weight every year. I’ve been trying to write about it since August, but couldn’t get the words on the page. Then this song, this magical, melancholic, deep, raw, honest song, helped me find words for what has been stuck for so long, and I had not been able to find the words to say.
If you have seen the movie or know the story, you might be wondering/panicking how I could possibly relate - I am not a waitress with a super power for baking pies, nor do I have a horribly dysfunctional marriage (for which I am extremely grateful...although if the Pats go to the Super Bowl again this year, all bets are off). However, the main character finds herself in a position in life that she didn’t expect and didn’t necessarily ask for. She has to come to terms with the things that she feels like she has lost about herself.
"It’s not simple to say,
that most days I don’t recognize me”
Sometimes I feel like I spend most of my time hanging out with someone I don’t know. I move through life in this body that I don't understand, with likes and dislikes I don't recognize. It needs things that I don’t know, and notes my lack of comprehension 99.9% of the time.
This became even more clear when an invitation recently arrived in my mailbox. My high school built a new arts building, and they named it after the single most extraordinary teacher I have ever had - Chris Wagner, my art teacher. They invited all of her former students to the dedication.
(And yes, that’s the caliber of teaching I am referring to - they built and named a building, just for her. No big deal.)
My old self would have RSVPed the very first day. I would have been beyond excited to see the building, and many of my favorite teachers and former classmates. I would have dug out my Varsity Art t-shirt for the event.
(We were State Champs. Admit it, you're jealous)
Instead, I froze.
I let the invitation stare back at me from my desktop for months.
What do you say to people you haven’t seen in 15 years?
How do I respond to questions about kids and jobs and travel and life?
The response “treading water and staying alive” is a bit of a buzzkill to lively conversation.
(Although, I’d like to think that all participants of the event also share my proclivity for staying on the alive side of things...)
Attending social events in a body you don’t know, is a bit like constantly parading around with a new partner. There’s nervous anticipation of how he/she will be received by your community, and the unsettling knot in your stomach that you don’t actually know what she’ll say or how he’ll feel about the event.
“It’s not easy to know.
I’m not anything like I used to be
Although it’s true
I was never attention’s sweet center,
I still remember that girl”
The truth is that I’m not the person they remember.
Not even a little bit.
I don't teach or sing, swim or run. I'm not making art, nor have I traveled the world as planned. I don’t have stories from my classroom, nor can I talk about this year’s Caldecott winners. I can’t honestly tell you the last time I picked up a viola.
In fact, the person they voted "most friendly" spends most of her time alone.
Its difficult to admit, but I'm not proud of this new person in my life.
I hope someday I will be, but I don’t think I know her well enough, yet.
It’s much like a canvas on an easel, waiting patiently for the return of the artist. But instead of a colorful and evolving composition, mine has been haphazardly smeared with a fresh coat of gesso to cover all that lies beneath. As if, with one quick swipe, all that had been growing was flattened.
And that feeling, of walking into the studio expecting to continue work on your life’s masterpiece and instead finding it dripping with thick paste, has yet to go away.
I want to tell you that it has. In fact, I’d go so far as to say that I’m ashamed that it hasn’t.
It has been 5 years.
Get a grip, Lydia.
“She is hard on herself
She is broken and won’t ask for help
She is messy, but she’s kind
She is lonely most of the time
She is all of this mixed up and baked in a beautiful pie
She is gone, but she used to be mine"
She used to be mine.
This person that I knew, inside out and upside down, used to be mine. For better or for worse, for awkward growth spurts and an unprecedented long run with orthodontia, she was mine.
I miss her.
I took a deep breath (or ten), put on my brave face, and went to the event. Buoyed by a dear friend and fellow varsity art team member, I nervously navigated the waves of familiar faces.
What a gift.
To be able to be there to honor someone who had indescribable impact on my life.
To give her a big hug and say thank you.
To see my beloved art history and math teachers, and give my theater teacher a big hug.
To joke about babysitting for my teachers' children, and laugh about memories of trips abroad.
I almost let fear and expectation get the better of me. I almost missed an opportunity that won’t happen again.
It was a stark wake-up call. My life, is a gift to be lived - not placed on the bookshelf until it looks exactly as I imagined.
“’Til it finally reminds her to fight just a little
To bring back the fire in her eyes
That’s been gone but it used to be mine”
On the surface, I’m not the person anyone remembers - myself included. But maybe beneath the thick layers of gesso and change, it's still the same composition. Maybe if I scratch hard enough on those extra coats of paint, I can still find that girl. Maybe, this is my chance to create something new.