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.
It has been far too long, and there is so much to say!
Many blog posts to come, but for now, I’ll start where I left off.
Remember that last blog post, with the theme of “Try Again?”
Super. Keep that in mind, it will come in handy.
Also, do you remember those plastic balls for hamsters and gerbils and other such rodent-sized class pets?
Ya know, the ones that had a hole to insert the hamster, that when closed allowed your furry friend to cruise around the first floor?
[Also the one in which Fluffer the Haas Hamster took a casual field trip down the basement stairs, circa 1992. Fear not, he lived to tell the tale.]
The best part about the ball of wonder was the endless amusement in watching the poor hamster roll around, see something he wanted, and SMACK! realize he couldn’t quite get there in a pink plastic sphere the size of a basketball.
And, bless his sweet little hamster heart, he would try over and over and over again.
I fear I have become a hamster.
I stopped treatment in June.
Yes, I realize it is August. Roll with it
[Get it….ROLL with it…]
It really wasn’t much of a conversation, more of looks passed back and forth across the table as my doctor and I both knew - it had been too long, it wasn't working.
I was 6.5 months into a 9 month program, and instead of improvement or at least equilibrium, I have new symptoms and exacerbated “old faithfuls.” Especially questionable given that you are supposed to feel 100% healed for the last 3 months. Oops.
So, we both knew. We knew the treatment wasn’t working, and we knew in that glance across the table that we are dealing with more than “just” tick borne illness.
We are still missing a big piece of the puzzle.
I think I’ve known for a while, back in the deep, dark recesses of my heart, but I wasn’t quite ready to bring it to the light. Odd as this may sound, the tick borne illness offered me something that I had previously shut out as a possibility - treatment. Recovery.
All of a sudden I went from a yogi in tree pose on a mountain, to a pony galloping in circles around the ring.
Sometimes when I look back on my blog, I feel like a bit of a joke.
I’m off to Mayo! I’m going to find a cure!...Wow, this is proving to be a bit harder than I thought…So it turns out I just need to relearn how to eat...False alarm - I don’t need to relearn how to eat...Ok, this is my life, let’s do this...Hold up - let’s remove a few organs, and THEN I will be well!…Hmm, not working out so well. Down a few organs, still no change...Ok, time for acceptance. I’m moving on! Life is grand!...But wait! You have a tick borne illness! We can treat this!...Aaaaand treatment is trying to kill me….Oh, and odd that I have all of these new symptoms too, must be from my treatment…Or maybe not from my treatment, or even from a tick borne illness at all?…
Open pink ball, insert hamster, sprint in one direction, run into wall.
If I’m not in a giant hamster ball, then I am most certainly on The Truman Show.
I MUST be a character in a movie who doesn’t realize that the entire world is watching her and waiting for her to put the pieces together.
Ya know, like a reaaaaaaally drawn out sci-fi medical mystery thriller.
With one main character.
About 23,090 supporting characters.
And scores of cookies.
So I’m back to trying again. I’m back to multiple medical “dates” per week. I’m back to gently suggesting the medical assistant take a seat before taking my medical history, as I slowly slide over my 4 inch binder of medical records and watch the eyes bulge out of his/her head. I'm back to the land of the bizarre.
On the plus side, I am now the topic of dinner table conversation, seeing as my neurologist and hematologist are married. I think I might start providing them with meals. If they are going to talk about me, I might as well be sure they are properly fueled, yes? I am a Certified Health Coach, after all. Greens for everyone!
I want to tell you that I jumped into this most recent search with much pep and gusto, but that would be a lie.
The truth is that I jumped into it much like my poor hamster fell down the flight of stairs - somewhat accidentally and with much exasperation.
I’ve done this whole search thing. Many times. Yet it seems that every time I set my soul to live and let live and say hasta la vista to the medical world, a new organ breaks and I’m back on the medical goose chase.
Frankly, it can be a wee bit exhausting.
But the thing is, I guess it’s kind of like an epic road trip, or a Bear Gryll’s adventure series. You do hard things and go as far as you can, and then you take a little break to reboot and refuel. Sooner or later, a new challenge surfaces and you are back at it - forging ahead and avoiding obstacles.
And although I may often wonder just where I am headed, this road trip is certainly not lacking in excitement. I have to believe that I'm on this path for a reason.
I just have to.
And while it has certainly taken an adjustment here or there, I know it is a true gift it is to be able to carry on, full speed ahead, and continue on this grand adventure of life.
On the other hand, blazing my adventurous path while safely enclosed in a giant pink bubble might not be such a bad idea...
It's not like this
should have come as a shock to me, this whole retirement thing, but somehow it
still hit me like a tidal wave. Most unfortunately I was not wearing water
wings, nor was I prepared with an industrial strength pool noodle.
those things would protect me from a tidal wave. Duh.)
I've always known that
my (former) county only held your spot for 24 months of long term disability,
but I never in my wildest dreams thought it would apply to me.
I mean, I knew the
details, because, um hello? I have an affinity for post-it notes and
highlighters. I do not miss details.
But I always disregardedthose details because clearly they weren't going to apply to me! Everything is
turning around! I'll be back in no time! Go-go-gadget stomach!
In January I got a call
that included two of the following:
A. Tears from me
B. Free puppies
C. A unicorn
D. A sternly worded
(I know it's a tough
one, take your time - I never liked multiple choice either)
So apparently when you
retire, you are supposed to apply for these things. Also you are
supposed to do this months in advance. In fact, at the exact moment that I went
out on short term disability, I was supposed to start applying for retirement,
ya know, just in case.
Just to review - when I
was 28 and lying in a hospital bed after someone jammed a hose through my
stomach, that's when I was supposed to think "hey, I should apply for
Good, now we are all on
the same page.
But all (somewhat jaded)
sarcasm aside, it was the furthest thing from my mind. For the entire duration
of short term disability, I was just busying myself with a few medical
catastrophes before I would return to teaching. Or at least that's how it felt
in my mind.
I never, in a million
years, thought I wouldn't be back in a week, a month, a year...ever?
It never even crossed
my mind. Not once.
Short term disability
turned into long term disability, and even when I decided to go back to school
and become a health coach, there was an eensy-weensy part of me that thought
how great it would be to use all that I had learned with my students and
colleagues, and health coach part time while I was teaching.
(Which hello, should
have been my first clue that my retirement was imminent. Clearly I've been out
of the classroom long enough to think for even a fraction of a second that I
could both health coach AND teach elementary school. Ha.)
As the most recent
months crept closer and closer to May 15th, it was always in the back of my
mind, but I kept it there on purpose.
Except when I
was filling out the 293,847 papers necessary for retirement. And doing things
like deciding who got my benefits upon my death, and if I wanted them to get
money all at once or in little “gifts” over the years --> ya know, like a little gold box that explodes with confetti upon opening it, "Surprise! Dead person money!"
Then it happened.
And instead of writing,
to heal and process, I fell off the face of the earth.
someone did secretly attach a high speed motor to my hamster wheel, and life
has been Chaos with a capital C, but mostly I've been hiding.
I won't lie about
(But if you're
responsible for the wheel motor, we need to have some words. I'll bring cookies
if you play nice.)
No, I didn't write
because I was busy.
I didn't write because
writing made it real.
So very raw, and
I always imagined that
when I retired from teaching, it would be this big, festive celebration.
I would have a party, and my family, fellow colleagues and I would
lift our glasses to a successful career of teaching, while my husband and I
began dreaming about our retirement life of travel, grandchildren, and
On the plus side, my
sweet husband brought me flowers and a retirement card.
(Sorry ladies, he’s all
So no, this did not go
And it has been
[I can neither confirm,
nor deny, an increase in Sweet Freedom baked good consumption...]
But now the shock is
starting to wear off, and I’m not hiding.
I want to swim back to
I'm ready to get back to
My outer world has
changed, but not my inner world. I can’t let being a teacher solely define who
I am and what I believe in, for if it did, then this would destroy me.
And I won’t let it.
I have a lot more
living, and loving, and laughing to do.
consumption. Equally ranking in importance]
So teaching was my
I gave it my all, and I
had big plans that went so severely off course.
But now I have big
plans for health coaching, and my business,
and although it’s not the road I planned, it is now the road I choose.
So I’m going to take a
big ol' gulp of green juice.
Think about it: It’s the only thing that makes sense!
What else would stump the medical community at large?
I’ve basically taken it as truth at this point. I welcome you to join me.
Let’s be honest, it comes in handy!
Walk into the wall that I SWEAR wasn’t there a second ago?
Spend 99% of the day in some pattern of hive/rash/mast cell tie-dye?
Casually paralyze an occasional body part here and there?
Wake up in the middle of the night and can’t seem to feel the entire right side of my body?
Although, in fairness, at that particular moment it is more accurately, "Holy Cannoli!!!!!!! Oh...aliens."
And sometimes it's not so much “cannoli"…
[insert sheepish face here]
Seeing as I’ve been invaded by aliens, life is never boring.
Recently they surprised me with an alien blood clot.
They wanted me to have my very own Great Red Spot. How thoughtful!
Great Red Spot? Atmospheric storm on Jupiter's surface? Anyone??
A few weeks ago, Mr. Restarting my Hard Drive and I went home for Passover and Easter. While home, I did a little “landscaping” in the basement. [Insert raucous cheers from my parents on reclaiming their living space]
Among letters and toys and notebooks and college acceptance letters, I came across the ever terrifying What’s Happening to my Body - Girls Edition.
It goes without saying that I
b)threw the book across the room as if it was contaminated (um, hello! puberty?!?! TERROR.)
c)crossed the room for a quick perusal for any chapters on aliens (once I stopped hyperventilating. Obviously.)
There were NO alien chapters.
Weren’t even any alien pages!
(The book went, with haste, into the recycle pile. And then I thought about rainbows and horses. A lot.)
So there you have it. I have totally figured it out!
and a bizarre 5th grade affinity for the planet Jupiter.
To say that I’ve learned a lot about myself over the last couple of years may, in fact, be the understatement of the century.
I could list all of the things that I’ve learned, but that might a) be the longest blog post in history and b) likely result in me forgetting what the topic is about one third of the way in.
Which…I suppose could be comical?
Regardless, today I’ll focus on just one thing that I’ve learned.
Only one, but it’s pretty important.
I’ve learned how I grieve.
More specifically, I’ve learned TO grieve.
I’ve spent a good portion of my life pushing through difficulty, in the hopes that if my hamster wheel kept spinning, that I wouldn’t have to feel, or hurt, or miss.
It works for awhile. Living the numb life has its perks.
But inevitably, loss comes back to bite you. You can’t just ignore and “keep on trucking” through things that hurt.
And, perhaps the most important lesson - that’s ok.
It’s ok to hurt, it’s how we grow.
In fact, I may go so far as to say we HAVE to hurt to grow. How else will we know what we are capable of? How will we know what is truly important? Without the disappointment and the loss, how do we find the motivation to aim higher?
Grieving, for me, is a solo act. Almost subconsciously, I retreat.
And the funny thing is, it takes me by surprise every time.
I’m going to go out on a limb here and assume that most people know why they are curled up on the couch contemplating life.
Puhlease people. Have you read this blog?
I generally don’t fit the mold.
Frankly, I usually figure out that my brain is full of questions when I notice that I haven’t blogged in awhile. When I find every excuse in the world not to sit down and do something that I love, then I know it’s time for a deep heart to heart with myself.
Lately, my brain has been on an endless noodling cycle of "where do I go from here?"
I have had time to grieve the loss of my beloved teaching career.
Or rather, been forced to. Finding the contents of 7 years of teaching in your office closet will do that to you.
And truthfully, I know I'm still in the process of letting that go. I'm not in a rush, I know it will be awhile.
But what I haven't ever really sat down and thought about is what happens if I never get the other pieces of my "former" life back?
I don't mean that to sound depressing. I mean to convey the simple conundrum of the situation.
What do you do when everything that defined you, is no longer a part of your life?
My life has been on hold since 2011. I've had, ya know, a couple of things going on.
Just organ loss and medical mysteries, no biggie.
But I think subconsciously I always thought that I would go through all of these hospital days/months/years in order to erase everything, and settle right back into my life as I left it.
Not exactly how that all worked out.
I know that I'm on this journey to learn, and grow, and find out who I really am. And I know that I have unearthed new passions and firmly established what is truly most important to me in this beautiful, crazy life.
But what I'm still figuring out is what to do with the things that I've left behind?
Spring for me has always been the season of running. Going all the way back to the Penn Wynne Elementary School Olympics, spring was a time to RUN.
And you are, by the way, reading the blog of the 5th grade high jump champion. Praying Mantis legs do indeed come in handy in the scissor kick. Penn Wynne Penguins represent.
Anyway - SPRING. RUNNING. (Do you SEE why I get nothing done??)
I happen to keep good company with a lot of runners. In fact, many of my close friends are runners, which has always worked out well for moments when I completely nerd out about the latest edition of Runner's World, or I want to talk about every detail of an upcoming race.
And lately, my husband has taken up running.
He has worked SO hard, and I am incredibly proud of him. He has found a dedication and determination that I don't think he knew he possessed, and I am his absolute #1 fan.
But I would be lying if I didn't say that watching my partner do something that was formerly "my thing" hit me hard.
I missed everything - the long weekend runs, the training plans, the feeling of walking through the door after a great run, and the feeling of walking through the door after a bad one. I missed the feeling of losing yourself in your run, and I even missed the early alarm clock times and the sore feet.
I had never experienced running on the other side. I had never stayed behind while the other person went out in terrible weather to run (and consequently, had never experienced the worry of when they would return). I had never felt like an outsider in the running community. I had never even been a spectator at a race.
So I had to figure it out, and through that process, I had to grieve.
I had to hurt a little, in order to learn a lot.
Running may not be over for me forever, only time will tell how that card will play out.
But I want to stay in the present, to live in the current, beautiful, moment.
And right now, I may not be able to do what I know so well, but there are still many things that I can do. I know now that life is beckoning me to dip my praying mantis legs into new endeavors, and I am eager to see where they take me.
On Sunday afternoon, I took myself on my own little Boston Marathon. I dragged out the old (terrifyingly tight) sports bra and my favorite running socks, and I ran 800 meters. I could barely breathe, everything hurt, my feeding tube was bleeding, my right eye was blurred, and it was a 50:50 chance on my lunch staying put.
In short, it was the most enjoyable half mile of my life.
I ran for the lives lost and forever changed at last year's marathon.
I ran for my friends and family running this year's marathon after months of training.
I ran to know that I am still part of something bigger.
I ran for my heart.
And best of all, for the very first time, I ran alongside my husband. Side by side, we finished my little mini (very mini) marathon, and then he continued on and I started my extraordinarily slow, and a smidge painful, walk home.
It may have been my farewell tour. It may have marked a temporary hiatus. But in my heart and mind, I am and always will be a runner.
It has been twenty forevers. (I learned that phrase from my mother-in-law...it's a good one, no?)
There is so much to update!
And turned 31!
And bought QuickBooks!
(Um, hello. I went to school for studio art and elementary education. This IS, in fact, life-altering news.)
But most importantly, you should start planning your trip to LA now.
Well, #1 - it's warm there. Also, sunny. Most notably - not snowing, and NOT "Sprinter."
But secondly, because I'm totally going to have a star on the Hollywood Walk of Fame.
I know, you must be thinking that they are making a movie about my S'Mores cupcake, and I don't blame you...because that would be a pretty sweet movie!
(SWEET movie...get it...)
But actually, a local journalist named Brian Hooks (check him out! http://brianhooks.weebly.com) caught wind of this here blog...and decided that YouTube needed a serious increase in sparkles, cupcakes, and medical mystery.
The term implies that there is a definite end point...but I'm not entirely sure this is true.
This Sunday, we will shove all of our earthly possessions into a crammed Uhaul and move to a new home, a whopping 1.6 miles away.
So I've been packing.
And packing some more.
And it has been weird. And emotional. And quiet.
A lot has changed under the roof of this house.
And all of a sudden, amidst boxes, dust bunnies, and the contents of my closet, I found myself sitting on my bedroom floor, surrounded by my former life.
horseback riding helmets,
17 t-shirts from Wolftrap Elementary School,
awards, certificates, ribbons,
and my expired passport.
And as I sat there, taking it all in, I was really rather dumbfounded by the magnitude of it all.
Odd, because those items are from my life.
But maybe this was the first time that I saw it all together.
Maybe this was the first time that I felt the loss of what was in one fell swoop.
And I sat there, quietly.
What do you do with boxes upon boxes of a life you don't know if you will ever live again? Do you give them all away, or do you hold on and continually relive the memories? As we heal, do we truly leave all wounds behind? Or do we continue to carry them through life?
So many questions.
These questions, and others, have stayed on the forefront of my mind for the last 2 weeks.
And daydreamed, as I do.
The truth is, I don't have the answers now.
That's ok. I don't need them.
For where would we be, without unanswered questions? How would we try new things and forge new paths?
Someday soon I'll look back at that moment with gratitude. I'll look back and smile, knowing that the stories in my closet encouraged me to grow.
To find new passions.
To dive headfirst into my new career.
To make new memories.
Maybe I already am.
And as I smush our belongings into the truck this weekend, I'll be lugging along the cherished stories in my closet. I'll remember what was and look forward to what is to come.
I don't quite align with the phrase, "everything happens for a reason."
It just doesn't sit well with me.
It almost works...but...doesn't quite make it.
To me it implies too much of a sense of false comfort. I'm not ok with justifying senseless acts of terror, and friends and family living with diseases, and countless other heartbreaking realities by proclaiming that they happen for a reason. And furthermore, implying that the knowledge of that reason should offer support and solace.
It may work for some, and that's ok, but it's not for me.
I do, however, believe that we have the power to use every life "happening" presented to us.
I use the word power on purpose - because that's truly what it is - empowerment through experience and choice and opportunity. A constant reminder that the choice belongs solely to you.
After the euphoric high that my mom is cancer free and my dad is continuing to be the most resilient team captain of physical therapy ever, my life hit a crater-like pot-hole this week.
I really and truly reached the end of Western medicine.
There are no more tests to be done, doctors to be seen, or treatments to endure. It's over.
I had joked about reaching the end, but when my doctor gently handed me my lab work and proclaimed that I was "an exceptional hot mess," I have to admit that I was a little bit shell-shocked and bewildered. I half expected the border patrol of Western medicine to leap out, demand a viable medically-treated body, and deport me to Mars upon examination.
I had known reaching the end was an extremely likely option - my liver had been staging protest after protest, and every set of lab results came back a bit more bolded than the week prior, but...really? The end?
Even if I still get compliments on my new yellow hue??
In fairness, I had a little warning. I was recently rejected from the National Institute of Health's Undiagnosed Diseases Program. They claimed I was out of their league and that there was nothing more they could offer. Every test had been run and mercifully, they didn't want to put me through them again.
"Undiagnosed disease a little too undiagnosed to be diagnosed."
So I've reached the end. My body has waved the white flag - er, spastically quaked is probably more accurate - and this chapter has come to a close. My liver needs to heal and I need to grow some white blood cells, stat.
No more antibiotics. No more 43 pills in a day. No more diagnostic tests. No more plan.
Perhaps the weirdest of all is the realization that barring any acute and accidental type of injury, I have very little use for a hospital.
So I'm starting over.
And sitting down on the couch with bewilderment, frustration, loneliness, and heartbreak feels a bit like welcoming back a circle of old friends.
But ya see, here is where that choice part comes in. Day in and day out, we have a choice. We have the power to choose how to use what's happening. I could plop into a ball or I could learn and grow and carry on.
So after a deep breath with my four old pals on the couch,
and tree pose,
and maybe a cookie (or three)...I chose joy.
I have reached the end of Western medicine, but not all medicine. Luckily for me, I'm not the first Lyme cowgirl in this rodeo, and an herbal treatment plan called the Cowden Protocol has been around, and effective, for years. It's no trail ride in the park, and the chemo-like side effects are identical, but it's a way to drive out my tick-borne foes while keeping my vital organs intact.
Which I'm told is, ya know, kind of essential.
So I'm trading in my pills for parsley.
And I'll carry on.
Because even though this may not be the life I expected, it is the life that has happened, and a constant gift of adventure and gratitude.
Everything doesn't "happen for a reason," but everything empowers us to make a choice.