The Unearthing Of Lyme Disease In a Body That Refuses To Give Up and a Mind That Is Determined To Change The Way The World Views The 'Things Underneath'
As I was wrapping up what I thought were the final changes to this story, I found myself in need of some fresh air, coffee, and good company, so I picked up my phone and texted Ari to see what she was doing. Sure enough, she was headed to one of our favorite coffee shops with her canine companion, Ueli. So I quickly 'saved all changes,' packed my bag, and made my way to meet the lovely lady herself for a 'here-let-me-talk-you-out-of-feeling-crazy,' sun soaked, mood boosting, and 'kind-of-like-a-therapy-session' hangout.
This story isn't about me, I promise, but in order for you to understand the impact that Ari has had in my life, and soon yours, I feel the need to give you a little back story. So, with my tea in hand and computer on my lap, I re-opened this page, certain that I would be able to click 'publish' and call it good, but after seeing her today, I felt that something was missing - rather, what I wrote didn't feel like enough. Didn't feel worthy of being an intro to Ari, her voice, and the difference she was about to make by sharing her story.
Maybe I was looking at this all wrong. Maybe the missing piece to this introduction isn't in adding more, but letting the story speak for itself. Letting her words fall into place as they meet your needs, not mine; whether they bring you comfort, strength, or simply a deeper and more clear understanding for what is happening to you or a loved one, the beauty is found, as Ari so brilliantly put it, in the 'Things Underneath.' In what we choose to take away from not only our life (with or without Lyme), but the friendships we've made, stories we've read, heard, followed alongside, or gained hope from at a distance.
Ari, thank you for showing up, even when it scared the heck sticks out of you, because believe me, I was equally as nervous when we first met. But I am so glad that we did.
Without further ado, this is her story...
This morning for a long time, I sat on my front porch - I soaked up what felt like some of the first sun of the season...I watched as Ueli snacked on the daisies in our front yard that seemed to have popped up overnight and I smiled as I realized that this was her first spring.
It was almost as if winter had never happened. But it had & it was because of it that today felt so sweet.
I remember the last time I felt healthy.
Just simply, effortlessly like Ari.
I'm not sure if the memory is so vivid only now in retrospect because of what has been lost since or if it was in fact, as sweet as I remember it being.
The sun rose on a beautiful mid-October Saturday in Bend Oregon, after a lovely night spent with out-of-town friends: The Reel Rock Film Tour followed by meaningful conversations about our futures over a few too many IPAs. It had only been a week since I had decided to forgo my beer-free sentence: I would conquer the stomachache and embrace the flavor and culture of beer in this well-versed town. I only wish now, that I had made that decision many weeks earlier. My friend Brooke and I mused over the somewhat uncanny similarities in our life trajectories over the last decade and I shared with her my internal battle about whether to dive headfirst into medical school or to pursue a Naturopathic doctorate instead – a conversation that has become much more meaningful and relevant since. It had been a couple of years since I had last seen Brooke, and my boyfriend Adam commented that night on the pleasure he took in seeing us reconnect.
Adam and I crawled into bed later than usual that night and talked about the highlights of this year’s climbing film – I’m sure we both dreamt of Patagonia, first ascents and big mountains we weren’t quite ready for.
I woke up excited to ride a beautiful section of trail we had been talking about for days. Adam had ever so generously gifted me with a mountain bike a month or so before and I had become very keen on the sport – having never gotten seriously into skiing, riding provided me with a sense of adrenaline and speed that I didn’t get climbing. Adam jokingly whined about how I never wanted to climb anymore and I would not so jokingly tell him it was his fault for getting me a bike.
We stopped by a coffee shop down the street on our way out of town to get a cup of our favorite pre-ride liquid crack. Brooke and I were standing in line laughing about who-knows-what, when I first noticed that something was wrong – I couldn’t see the left side of her face.
I blinked. Blinked again. Half of her face was still missing.
“There is something wrong with my eye”, I said - my deliverance of the statement was extremely calm given the intense elevation in my heart rate in the few seconds prior.
I looked up at the coffee menu and saw an only slightly recognizable phrase:
ESSO NKS - I knew it was supposed to read ESPRESSO DRINKS.
Yeah, something is wrong
“Ari”, Brooke said trying to bring me down to earth “Ari, how many fingers am I holding up?” Brooke was in her first semester of nursing school at the time and I remember being impressed by her quick and thoughtful engagement in my situation. I don’t remember whether I answered her or not, but I could not see any fingers.
Something is wrong.
I hurried to the bathroom, splashed water on my face and looked up– when my gaze met the mirror my worry quickly turned to panic. My right eye, my right cheek, the right corner of my lips, they were all there but my left side was gone, like someone had taken an eraser to half of me – I had dissolved into the space where I used to be.
Something is wrong. Something is very wrong.
I’m not sure that I’m someone who takes things for granted. I don’t mean that in some self-righteous way, just in the way that my deep rooted anxiety has always had me living in some alternate universe far more tragic than my reality: worst case scenario’s, what ifs, could bes – and thus, in some twisted way, the flip side of that tragic universe is my acute awareness of how lucky I am, of how relatively benign my existence has been thus far.
I ran outside, past Adam, past my friends, my thoughts were running wild and my footsteps followed in suit. I had just the perfect amount of medical knowledge to be dangerous – an asymmetrical change in vision couldn’t be a good thing. A stroke maybe? I remembered seeing a TED talk about a neurosurgeon who had a stroke and had the presence and peace of mind to record her experience in the midst of all the chaos. I closed my eyes to check my balance, lifted my arms out in front of my body to assess muscular strength and symmetry. In such an ordinary instant everything had seemed to change. As I paced back and forth in the parking lot, obsessively checking my surroundings to gage whether or not my vision had improved at all – I felt my dreams of medical school dissolve, my climbing ambitions dissipate, my deep aesthetic appreciation for everything, morph into a distant memory. I bargained with some higher power I’m not even sure I believe in, promising to be the best doctor, partner, daughter, sister, friend I could be – if I could just see again.
Something is wrong.
I called Adam in a panic and told him that I needed to go to the Emergency Room – a phone call that he would become very accustomed to.
October 18th 2015 was the first of what would become a saga of medical appointments in the months to follow and it was also the first of 26 times that a doctor would tell me I was “fine”, that I was “just having any anxiety attack," that I should “find a therapist” and try to “eliminate the stress out of my life."
I have a file on my computer titled “Medical Hx” – it is a 16-page document that chronologically tracks every detail, every doctor’s appointment, ever new symptom that unfolded after that first visit to the ER in October. For a long time, that file was my bible – I carried it in my bag, adding irrelevant details daily, anything I could think of. I studied it before doctor’s appointments, hoping that at some point it would serve as a magical key, the missing puzzle piece– that finally, some physician would take it out of my hand, read between the lines and say, “Ah ha! I’ve got it, I know what is wrong with you!”.
I just wanted an explanation. I wanted someone to explain to me why I periodically lost my vision, why my head hadn’t stopped pounding in months, why my limbs would go numb and my skin would crawl. I wanted someone to take my hand and tell me it would be okay – that my ears would stop ringing, that my blurry vision would return to normal, that my heart would stop fluttering and that I wouldn’t have to wear sunglasses at night forever. I just wanted to be reassured that the buzzing sensation at the base of my skull was temporary, that the brain fog would clear up, that the dyslexia was a glitch and that my equilibrium would return to normal. I wanted someone who knew anything, anything at all, to grab me and hug me and tell me that when it felt like I was having a heart attack, that when it felt like my world was going to end, that it wasn’t. I just wanted some hope that the rapid decline of my strong body into a fragile and energetically depleted vessel was a process that could be reversed.
No one ever asked to see my file, to read my bible. I would hold it in my hands during appointments, refer back to it to make sure I wasn’t leaving out any details. I’d offer it to my doctors as a helpful gesture: “Here! This! This is everything you need to know! Help me! Please!” Most of them would smile, some would shrug it off, one told me that it was “cute” how concerned I was.
On March 23rd, 6 months after my first recognizable symptom, I was diagnosed with Lyme disease.
I’m lucky, really. Lucky that I have a friend with Lyme who recognized my symptoms when my doctors did not. Lucky to have parents who followed my lead and paid out of pocket for me to see a specialist that no doctor had referred me to. Lucky to have a partner who trusted my instinct and on a whim called in sick to work and drove me up to Seattle to see if there was any hope of finding an answer.
‘Lyme Disease’ is really just a palatable name for a full-body bacterial invasion by a very smart and very understudied bacterium called Borrelia burgdorferi. The causative bacteria are capable of transforming into three distinct bacterial forms: a spirochete, a bacterium deficient in a cellular wall and a cyst form. All three forms react differently to certain antibiotics and are treated and managed differently depending on where one is in the disease process. Lyme attacks the host’s entire body and symptoms manifest uniquely in everyone.
I keep a Lyme diary. It is an ironic green Journal with decorative limes carved into it. I bought it at Walgreens on the same day I bought my first pill box – a colorful piece of plastic with four individual pill containers allotted for each day of the week. I remember holding it in my hands and doing a quick calculation in my head, I chuckled when I realized the 28 pill compartments wouldn’t be enough for my weekly antibiotic intake. It is a tool I didn’t anticipate utilizing for another 80 years or so, but I’m grateful it exists nonetheless.
Lyme will change me, that’s all I know for certain. It already has.
It changes who I am in my body every minute of every day – it has made me acutely aware of the aspects of who I am that I most identify with and it has surprised me with the ease at which I’ve let some of the others fall to the way side. It has forced me to find comfort with myself in the empty moments and it has allowed me the space to relearn myself – to acknowledge exactly who I am when the pace and intensity of last year and all the years before it, dissolve and morph into something new. It forces me to love myself in a new way and perhaps in a real way, for the first time.
I spend the better portion of every day trying not to be envious of those around me, trying to find ways to unconditionally love and support the ones who do that for me day in and day out, despite my circumstance and despite theirs – which so often seem easier, better, less painful than my own. Though it is not all bad - there is a known saying that now weighs heavier on my mind whenever I connect with an old friend or meet a new one, a truth unveiled by the unseen agony and relentless discomfort under my skin: Everyone is fighting their own battle. We all have things underneath. We are all just doing the best we can with the hand we have been dealt.
I have a silly-nothing memory of one of the many mid-anxiety attack phone calls I’ve had with my mom. This one in particular was shortly after I had started back to school after a 14-month break post college graduation and well before my health had started to decline. I recall being stressed about a bio-chem midterm which of course spiraled out of control into a plethora of other un-anchored anxieties. I remember telling my mom that I didn’t feel like I had ever really been tested in life, that I carried around the burden and fear of not knowing how and even if I’d be able to handle something tragic if something were to happen.
“You’ll find the strength, R”, she said.
She was right. I’m stronger than I ever knew I was or imagined I could be. Lyme has given me that remarkable gift, if nothing else.
Like all of us, I have good days and bad days. I get scared out of my mind from time to time, but in general I’m not so afraid anymore. I’m prepared to live with Lyme for the rest of my life, managing symptoms with colorful pillboxes, ironic journals and a refrigerator full of supplements from Katmandu if I need to. But another part of me, the bigger part of me, is totally prepared to kick this things ass.
I have dreams and goals that have only bean amplified by all of this: ambitions that seem farther out of my reach than they used to, but a new sense of determination and purpose that I know will fight relentlessly, no matter how many times I have to hit the pause button. I have a boyfriend who despite losing just as much of me as I have, helps me find joy daily. I have parents who are relentlessly and unmistakably supportive, no matter where I am in this process. I have a brother who calls me frequently just to tell me he loves me and an aunt who texts me every time she thinks of me. I have friends who sit with me while I’m scared and play hard with me while I am able. I have co-workers and bosses who understand the unpredictability of my well-being and a cousin, who despite being in the remote jungles of Panama, checks in whenever he can. And on top of all of that, I have the sweetest most empathetic canine companion in the whole damn world.
So even with Lyme, life ain’t so bad.
Do you seek comfort in photos of adorable dogs and beautiful places? If so, I encourage you to follow Ari along on her adventures by checking out her Instagram
I know you know what's coming, but just because it would feel wrong not too, AND because it's incredibly important...
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