May is Lyme Awareness month.

It seems ironic that we would find a diagnosis and begin treatment now, after so many weeks, months, years of being ill…But it’s also completely appropriate — because if my story can help just one person either through their own journey with Lyme or to bring such awareness that they may show compassion for others fighting this disease, then maybe it’s worth it.

Because education and awareness is where it begins…

It’s how we win.

* * * * *

Ok, so now that you know how “ticked off” I am, let’s get down to the science of it all…

It starts with a tick. See the period at the end of that last sentence? They can be that small, almost impossible to detect, and yet the damage it causes can be considered, in a word, disastrous to the human body.

Commonly known as deer ticks, these insects thrive in nature, just as they thrive on animals, just as they thrive on us.

First recognized in 1975 in the town of Lyme, Connecticut, this disease has since spread to nearly every continent and is most prevalent in North America and Western Europe. Recent statistics claim it to be an epidemic on par, if not exceeding, that of HIV and AIDS. While it was once believed to remain in a controlled area (namely, New England), the Eastern, Mid-West, and Western United States now show a high-incidence rate, making it one of the fastest-growing infectious diseases in the country. Land development has stirred these ticks from their habitat of primarily wooded areas to more suburban environments, which researchers believe may be a factor for the rapid spreading of the disease.

Here’s the science behind it:

Lyme Disease is spread when a person (or dog, as in the case of canine-Lyme disease) is bitten by a tick that has been infected with a bacteria called Borrelia burgdorferi. Fancy, huh? Borellia burgdorferi is a member of the spirochete family, a corkscrew-shaped bacteria with similar physical components to Syphilis.

When the infected tick feeds on its host (i.e. you), bacteria is transmitted into your bloodstream, eventually making its way into tissue and manifesting into a multi-system disease. These bacteria are smart. Like, really smart. Like, MENSA smart. Remember that corkscrew shape? This shape is what allows them to travel through the body’s tissue and into the central nervous system and, in later stages, the heart, and the brain. And when treatment does begin, they burrow even deeper into the body, often forming cysts in which to hide themselves.

If found early, Lyme Disease can be treated (and presumably cured) with a course of heavy-duty antibiotics. However, what makes this disease so complicated is that its symptoms are often overlooked, the testing is notably inaccurate, and doctors often turn a blind eye due to the disease and its treatment’s controversial and politically-sensitive nature (more on this later).

A clinical diagnosis has become necessary in order to diagnose Lyme Disease, as the classic bulls-eye rash (known as an EM rash) appears on only a percentage of patients and, even then, only within a few weeks of being bitten. What makes a diagnosis even more challenging are the symptoms with which early Lyme is presented: fatigue, chills, fever, headache, swollen lymph nodes…Sounds a lot like Mono, doesn’t it? In fact, that’s what we believed I had contracted initially and had been diagnosed with multiple times over the past ten years…A virus, a cold, a “summertime flu…” With seemingly generic symptoms, it’s easy to see how such a “simple disease” to treat in its early stages can be so readily missed.

But what about the testing? Surely, there’s got to be some kind of bloodwork that can be done to confirm or dismiss a diagnosis of Lyme Disease?

And that’s where the controversy begins to take shape…

Remember when I said that Lyme Disease needed a clinical diagnosis? That’s because diagnosing Lyme is a lot like piecing together a thousand-piece puzzle without the picture on the front of the box to guide you. What you have spread out before you are misshaped puzzle pieces that look a lot like each other, and it takes trial and error, some guesswork, and a lot of patience to put it all together.

And, more often than not, you can’t do it alone.

Lyme is recognized as being a disease that mimics other autoimmune diseases: in its late stages — such as my experience — its symptoms can lead doctors to misdiagnose Lyme patients with the likes of: Lupus, Fibromayalgia, Rheumatoid Arthritis, Multiple Sclerosis, Chronic Fatigue Syndrome, Parkinson’s Disease, and many others. In fact, the symptoms are so similar that some researchers are beginning to investigate the connection between these diseases and Lyme, and many Lyme-Literate doctors are questioning whether these diagnoses are separate diseases at all.

That’s where all the pieces comes together: a doctor knowledgeable in Lyme will take a history and look at the evidence –  look at you — and take into account all of the symptoms and testing that either rules out other diseases or definitively points to Lyme.

Testing alone isn’t a definitive conclusion. Especially since the initial testing for Lyme antibodies are often inaccurate, especially in the late or chronic stage of the disease. The CDC even acknowledges the possibility for false-negatives, and many Lyme-advocate organizations, including ILADS (International Lyme and Associated Diseases Society) state that the initial test for Lyme is only 65% accurate.

As of today, there are two blood tests for Lyme: The ELISA test is used by doctors as the first of a two-part screening test for Lyme antibodies. If the test is positive, the Western Blot test — more sensitive than the ELISA test — is ordered to check for specific bands.

Not only are the blood tests themselves highly inaccurate, but the labs in which they’re performed only report certain bands, which are then reported to the doctor and patient as negative or a false-positive. Furthermore, rarely are these patients checked for the co-infections that are often discovered in conjunction with Lyme Disease, which further complicates the disease, its progression, and its eventual treatment. (Sadly, there are only two known labs in the United States whose testing is sensitive enough to accurately check for both Lyme and its co-infections).

Ok, so that doesn’t seem so controversial. What’s the deal?

It’s true that finding a diagnosis can be the most frustrating part for some patients. Personally, I went through my own living hell for at least ten years, visiting doctor after doctor, undergoing test after test, diagnosed with everything from an anxiety disorder and depression to PCOS, gallbladder disease, Fibromayalgia, migraines, Chronic Fatigue Syndrome, Neurally Mediated Hypotension, and more when in fact, every single “diagnosis” was actually a symptom of Lyme Disease and its co-infection of Babesia (a malaria-like infection). Everything. Everything. Yes, including the panic disorder, I was surprised to discover.

But the fight doesn’t end with a diagnosis. In fact, that’s often where it begins.

The outstanding documentary “Under Our Skin” (available for free on Hulu and Netflix — go watch it right now, I’ll wait…) peels back the curtain on the politics surrounding not only the diagnosis of Lyme Disease, but its treatment as well.

Doctors and researchers (and many medical websites) follow the IDSA guidelines that state that a 2-4 week course of antibiotics will cure Lyme Disease, no matter what stage. Because of this, insurance companies often refuse to pay beyond the 30-day prescription, costing patients thousands of dollars out-of-pocket for further — necessary — medical care. However, it has since been discovered that many of the doctors and researchers who wrote these guidelines are working with the insurance companies.

Let me put that another way: the same doctors who claim that it only takes 30 days of antibiotics to completely cure any stage of Lyme Disease (never mind its co-infections) are in the pockets of the insurance company.

One more time: Through their own willful ignorance and arrogance, these so-called doctors are saving insurance companies money instead of saving patients’ lives.

Those who are in late-stage or who have chronic Lyme require months and even years of treatment before they even begin to feel better, never mind becoming “cured.” And those who have the most severe cases of Lyme and its co-infections spend most of this treatment feeling worse due to what’s called a Herxheimer reaction.

Remember how smart these bacteria are? They want to survive at any cost, so they will burrow and hide deeper in the body while the antibiotics seek them out and then, as if saying one last hurrah, as they’re being killed off, these bacteria release toxins that cause a reaction similar to the symptoms of the disease itself with varying (often heightened) intensity — thus the fight song that patients will get worse before they get better, the prayer to hold on because to “Herx,” so to speak, means the antibiotics are working and there’s hope for a future.

Yet because of the treatment guidelines and refusal of many non-Lyme-literate doctors to treat further than the 30 days, patients end up reverting or becoming worse.

Lyme — a disease so needlessly dangerous as it becomes an epidemic– can destroy the body and the mind, leaving its patients crippled by a disease and a system that refuses to save them.

It’s enough to really tick you off.

* * * * *

Note: A more in-depth look into this controversy regarding Lyme treatment and diagnosis and my own views/experiences will be continued in a follow-up post. In the meantime, please (please) watch the documentary “Under Our Skin” and share it with others so that awareness and compassion for those fighting this horrible disease can grow.

Disclaimer: I’m not a doctor, but rather a newly-diagnosed Lyme patient. The above information is knowledge based on my own research and discussions with other patients and doctors. If you find anything to be factually inaccurate, please don’t hesitate to contact me so that I may amend it immediately. My sole purpose for these chronicles is education, awareness, and my own catharsis.

Sometimes, when I awaken in the morning, it takes all of my energy just to walk downstairs to let Riley out the back door. Some days, on the good days, I can get dressed and make it to my car and drive all the way to work. Some days, on the better days, I can last for a few hours.

But then that energy slowly begins to drain and everything changes.

Time seems to slow down and a fog layers my mind — so thick that I can’t recognize the work in front of me. Confusion settles in and nothing feels real — not the co-workers and friends who surround me, not the computer blinking in front of me, not even myself. I’ve been clocked at typing 90 plus words a minute, but I can barely press down on the keys. And when I lift my hand to sign a document, all I can manage is an illegible scrawl. I try to speak, but I stutter, unable to form the words, though my mind knows them, though internally I’m shouting at myself to wake up, Susan! For God’s sake, just speak! Shout, scream, cry!

My face is pale and my eyes are blank when my mom comes to pick me up, and she says she barely recognizes me. And when she tells me to put on my seatbelt, she watches and waits as I struggle to respond, as it takes minutes for me to pull the strap and click the buckle into place.

She’s scared. I want to hug her, I want to tell her I’m OK, but I can’t. Because I’m not. I’m terrified, too. I don’t know what’s happening to me, and I don’t know what’s happening to my mind.

I beg her to take me home, where she helps me shuffle upstairs because I can barely walk. And she tucks me into bed and I close my eyes and I’m immediately out. I sleep for hours. When I wake up, my mind is a little more clear; I’ve regained my speech and my motor skills are responsive again, but I barely remember what happened, as if I was outside of my own body, completely detached from the world and everything in it.

Throughout the next few weeks, I try returning to work for a few hours at a time, doing what I can to satiate the symptoms: I layer damp paper towels on my legs beneath my dress pants to ease the burning sensations, taking Advil like it’s candy to lessen the stiffness and pain so that at least I’m able to walk, but it only takes a  few short hours before the fog returns, it only takes a few minutes for time to feel like it’s slowing down again. I leave for home while I’m still able to drive, trying to hold the tears of frustration and fear at bay.

This is my waking nightmare, I realize, and I wonder if it will ever end…

* * * * *

Read: Ticked Off (Part I)

Not again, I thought on another visit to yet another doctor. Dear God, I can’t go through this guessing game again.

But I was crashing. And I knew it. Only, this time, everything was different. This time, I wasn’t recovering and the symptoms were that much worse.

After a 24-hour holter monitor showed no abnormalities with my heart — despite my complaints of chest pressure and palpitations — my family practitioner sent me to a cardiologist, who ordered a stress test and a Tilt Table Test.

No problems with the stress test, they reported. I glanced at my dad as we walked down the hall of the hospital to Cardiology — at this point, we weren’t expecting much from the Tilt Table Test, either. Yet, after I was pumped with medicine to increase my heart rate for the second-half of the test, I felt myself growing sweaty, nauseous, and dizzy. The nurse tried getting me to focus:

“Stay with me, Susan,” she kept repeating. “Are you with me?”

“No,” I muttered…and promptly passed out.

I was diagnosed with Neurally Mediated Hypotension and instructed to up my salt intake to keep my blood pressure raised. And while that may have explained the dizziness and fainting, it didn’t explain the neuropathy, the headaches, the muscle and joint pain, the electric shocks running through my neck and the burning sensation heating up my legs.

And it certainly didn’t explain the years of profound fatigue.

At our request, I was referred to the Neurology department at Johns Hopkins Medical Center — one of the top centers for medicine in the United States. Surely, if anyone could figure out what was going on with my health — with this sudden onslaught of strange and progressive symptoms — it would be the brilliant minds of some of the world’s top doctors.

Right?

The neurologist and his med student immediately put us at ease, and my mom, dad, and I exchanged looks that read, maybe, finally, here’s someone who can help us. For the first time, here was a doctor who listened attentively to my history and conversed with me — not arrogantly, not just as a patient, but as an equal, as an intelligent human being who just needed his help. I was immediately grateful for him.

I underwent a brief neurological exam in his office, and after failing a balance test twice, was ordered some more bloodwork and an MRI of the brain and put on medication to ease the joint and muscle pain. The MRI showed nothing substantial, while my bloodwork came back with a vitamin B12 deficiency.

I was diagnosed with Chronic Fatigue Syndrome, Migraines, and Fibromayalgia.

But wait, I thought. This didn’t make any sense…

In the past three months, I had been diagnosed with Chronic Fatigue Syndrome, Migraines, Fibromayalgia, Vitamin B12 deficiency, Neurally Mediated Hypotension, and Peripheral Neuropathy. How could I have acquired six separate disorders and diseases so quickly? How was it even remotely possible that these were all individual causes and not symptoms of something else, something we hadn’t yet figured out?

It didn’t feel right to me, not when I was feeling so badly, not when I was steadily getting worse…I wasn’t willing to accept this answer — certainly not when doctors had been wrong before. There was something else, something very real going on with my body that no one was able to figure out, and I began to wonder how much of that stemmed from no one else being willing to connect all of the dots.

But I was connecting the dots. If the doctors weren’t willing to help me, I decided, maybe it was up to me to help myself.

I spent the next week sleeping 18-20 hours a day, awake only often enough to take Riley out or make a meal for myself or shower or do a bit of cathartic writing so that at least my mind would remain active even if my body couldn’t. I Googled every search phrase and symptom set I could think of and scoured the message boards.

And I kept returning to the same conclusion: Lyme Disease.

I had tested negative for Lyme Disease multiple times before, but the more I read patients’ personal experiences, the more I saw myself in the diagnosis, and all of my symptoms and the test abnormalities began to make sense. I called my family doctor and requested the Western Blot test — a test that is reportedly more sensitive and accurate than the ELISA test, which is unfortunately used as the standard of initial testing today. She refused to do the Western Blot, stating that if the ELISA is positive, only then is it procedure to go onto the other test for confirmation. She doubted the accuracy of it coming back as positive, however, stating that it could be a false positive as my history showed I had always tested negative before.

Still, I insisted on the bloodwork and then requested my own test kit from a lab in California — one of only two labs in the United States who uses sensitive testing for both Lyme and its co-infections. My previous experiences had bred a deep mistrust for doctors and lab results, and I knew that I had to take control of my own health.

I emailed the neurologist asking if he would sign off on the blood testing for the California lab, but he, too, refused, stating what he believed to be the high accuracy of the ELISA test (interestingly, even the CDC acknowledges the inaccuracy of this test) and sticking to his diagnosis of CFS, Migraines, and Fibromyalgia. I couldn’t be angry with him — not really. The more I researched Lyme, the more I discovered the political controversy and ignorance in its diagnosis; I couldn’t blame this doctor for being so unwilling. So I thanked him for his time and his care and respectfully wrote that I was going to pursue a diagnosis on my own.

If doctors weren’t going to help me, I decided firmly, then I was going to have to help myself.

But helping myself was getting harder and harder when I felt both physically and emotionally drained. I could see the worry and frustration in my parents’ faces, caught the concern in my brothers’ eyes as they stopped by my house to see if I needed anything; I answered texts from friends reassuring them that I was fine, though I felt anything but fine, and I could hear the disappointment in my co-workers’ voices as I called to say I wouldn’t be coming into work yet again, though I tried — oh, I tried.

The feeling of failure, the guilt at disappointing people, the knowledge that no one outside of my family or my close circle of friends who saw the change in me could possibly understand the nightmare I was living began to break me down.

I called my mom in tears, tired of this fight, beginning to believe that maybe it really was all in my own mind, as some people ignorant to the situation have claimed. Maybe this is just me, I began to wonder.

Maybe this was just my genetic make-up and I have to get used to the fatigue and the pain.

I was ready to give up. I didn’t want to fight anymore, I didn’t want to have to be strong when every other part of me was feeling so weak; I just wanted someone else to take the reins for awhile.

And so I prayed. For the first time in a long time, I prayed –  really prayed. And I’m not even sure what it is I asked for, but tears streamed down my face and my heart grew heavy as I begged for some reprieve. Because I couldn’t…I just couldn’t do this anymore…

Everything changed the next day. And if I didn’t believe in answered prayers before, I certainly believed in them now.

I opened up my email to see an answer from one of the members of a message board I had recently posted to, offering the names of some Lyme-Literate doctors here in Pennsylvania. I read down the list and called some of the numbers, but I kept returning to one name — an advocate for Lyme patients, the note on him read, this doctor and his entire family had once been Lyme patients themselves.

Almost intuitively, I knew that here was my miracle.

His wife called me back almost immediately, and I remained on the phone with her for over an hour and a half as we talked about the crippling nature of Lyme Disease. She told me about her family’s own experiences and educated me on Lyme’s co-infections, and I found myself nodding, wanting to cry from gratitude and thanking God and whoever else had led me to them. Because every single symptom she listed — symptoms that other doctors had ignored or brushed off — seemed to match my own life. And when I told her my history — of being diagnosed with mono multiple times and how everything seemed to progress immediately after surgery — I could hear the knowing nod in her voice.

It would be expensive, she warned, but I knew that now that I’d found someone who could help me get my life back, I wasn’t willing to give them up.

I wasn’t willing to give up.

Two weeks later, my parents and I traveled the three hours to meet them. The appointment lasted five hours as they consulted, educated, and did their own examination and testing.

“Does she have Lyme disease?” My dad asked the doctor directly at one point.

“Oh, yes,” he assured my family, “and at least one of the co-infections.”

They set me up with a prescription for heavy-duty antibiotics and vitamin supplements to begin treatment right away, handing me literature and offering me reassurances and themselves as examples that though it’s a rough journey, though it’s the nature of this particular beast of a disease to get worse before I get better, I can be healed.

And as I shook their hands and thanked them over and over again, one thought kept ringing in my mind:

I’m going to get better. 

* * * * *

The more I researched Lyme leading up to a diagnosis, the more angry I became at the willful ignorance of the medical community of such a debilitating disease, and whether this would turn out to be my diagnosis or not, I knew that I would become an advocate and lend my voice to the chorus of those educating others on the politics and controversy surrounding something that is truly so needlessly physically and emotionally crippling.

In an effort to bring that awareness to others, as well as for my own catharsis, I’ll be continuing to chronicle my journey through treatment on this blog. My hope is that, through education, compassion can thrive — compassion for others going through similar situations and for those amazing and strong people willing to become a part of their much-needed support system.

Here, I’ve told the beginning of my own journey…But just what is Lyme Disease, exactly, what is all this controversy about, and how big of a deal is it? Stay tuned for the next post in which I break it all down. Yeah, I know — there be Science happening on this blog. Hang in here with me…

Life is not merely to be alive, but to be well.
- Marcus Valerius Martial

Maybe it happened when we were still kids, as we played in the woods behind my neighborhood, building a fort out of downed sticks and searching for newly-sprung daffodils.

Maybe it was the sixth grade camping trip that plastered mud to our jeans and trapped brambles on our sweaters as we followed the trail to the watering hole in the forest.

Maybe it was our visit to see family friends in the Pocono’s — that day when we played down by the stream and my brothers and our friend’s son shouted to run before shoving me up a tree to protect me from the black bear they claimed to have seen.

Maybe it happened during that month in France, as I rolled logs down the embankment in a medieval forest to be chopped for firewood back at the inn, my eye growing red and my face beginning to burn as I fell ill from some unseen insect bite.

Maybe it was just as simple as playing in the park, on the playground, in my own backyard…

We heard all the warnings from our parents and teachers: wear socks and long pants, watch where you’re walking, be vigilant for ticks. But what could a tick do, really, we thought as kids. And, ticks don’t live around here, we believed as adults.

Ticks. As tiny as the period at the end of this sentence, these insects carry a disease that can cripple your life in every way imaginable, with tests that are up to 60% inaccurate and symptoms that mimic everything from the flu to Lupus.

Lyme Disease. Co-infections.

Who knew? Who could have guessed that something so small could cause something so debilitating?

Who knew all it would take — the many years of guessing games and believing that maybe it was just me, all in my mind — to find the answers.

And who knew how complicated it would all become just to get better.

* * * * *

We thought I had caught mono when I fell ill with fatigue and swollen lymph nodes — an illness that kept me out of school for a month during the 7th grade. Since that time, I’ve had mono on at least four other occasions, tested positive for the Epstein-Barr Virus, was told I had the human equivalent of the Parvo-Virus, and then, upon the deduction that my fatigue wasn’t going away, was diagnosed with Chronic Fatigue Syndrome.

This unrelenting fatigue has haunted me almost my entire life: I was active as a child, but after my first bout of mono, I spent most of my after-school hours sleeping until my parents woke me up for dinner. Though I was successful in college — named to the Dean’s List and serving a role as a writing tutor for three years and editor of our literary/arts magazine for two — I scheduled my classes so that I could take naps in between, and when friends and I planned nights out at the bar, I made sure to sleep for a few hours before meeting up, trying to store up enough energy for a night out in town.

It became a joke among my family and friends — “Susan’s taking a nap again, surprise, surprise” — but it was how I’d learned to live. I used to think, I don’t drink caffeine, maybe this is what I need to stay focused and alert and energized. Sleep restored me while everyday life seemed to drain me.

It didn’t always seem so bad. There were periods of high energy when naps seemed like a thing of the past: Trips abroad and memberships to the gym seemed to create a surge of adrenaline. And I would think, This! This is what it feels like to be normal, to have energy! This bubbly and energetic person is who I really am, underneath the tiredness.

But then came the crashes. And each time, it has taken longer and longer to recover.

The fatigue has always been the worst, but slowly other symptoms began to creep up, invading my body, seeking their own attention. In 2009, months of severe upper and lower abdominal pain and endless testing led to the discovery of a collapsed ovarian cyst, which — among the inability to lose weight, the mood swings, the hot flashes — caused the doctors to conclude that it was Poly-Cystic Ovarian Syndrome. I was put on birth control to regulate the hormones and stop cysts from forming.

I thought, maybe this is the answer.

The symptoms persisted.

Still, I tried my best to ignore them, and for awhile, I was successful; for awhile, I believed I was feeling great. And maybe I was — I had so much else to occupy my thoughts and time, after all: I bought a house, I was succeeding at a job I love, I was writing and working on creative projects again, I was maid of honor for my best friend’s wedding, and I even got to see New Kids on the Block in concert…Everything felt like it was falling into place.

Until, suddenly, it wasn’t.

Last fall, the abdominal pain returned in full force. I visited the ER at three different hospitals five separate times in an effort to find some cause or, at the very least, some way to ease the pain.

Vicodin helped. But there was no way I was about to remain doped up the rest of my life just to have some relief. Multiple CT scans, ultrasounds, extensive bloodwork, a HIDA-scan, and an upper Endoscopy (in which my gastroenterologist insisted it was just a sensitive stomach) all showed up as negative. Still, we persisted until finally my general practitioner referred me to a surgeon who agreed to remove my gallbladder. The pathology report showed that, despite no signs of gallstones, my gallbladder was diseased.

I cried. My mom cried. Finally, we thought. Finally, we were at the end of this nightmare. I could get my life back.

I returned to work with as much enthusiasm and focus as I’d ever had; I was working on personal creative projects I’d put off for years; I was planning trips with friends, began dating again, and even bought a treadmill and began to train for a 5K. Nothing could take this joy away from me, I thought.

This…This was how life was meant to be lived.

Only, it was short-lived.

I was so excited to have my life back — to have me back — that I ignored the other signs that began to emerge, believing that the familiar abdominal pain was just leftover healing from the surgery, that the tingling hands and feet, the occasional numbness, the electric shocks running down my neck and shoulders, the chest pain and pressure, the severe headaches and dizziness and floaters in my vision were just a nuisance. Maybe I was just sitting in an awkward position, maybe I pulled a muscle while running, maybe I was a little more stressed than I realized…

Then, on the way home from a great dinner and conversation with a friend one night, my vision became blurry and my head hit the headrest as I almost blacked out behind the wheel. It scared me enough to tell my mom; it scared me enough to make an appointment with the doctor.

And I cried when my blood pressure was lower than my already normal low, when that, coupled with the chest pressure and neuropathy, caused my doctor to order another round of scans and bloodwork and sent me to another doctor. I cried when those tests came back negative while the symptoms began to get more pronounced, when I blacked out for seconds at home and fainted at work.

Dear God, I begged as I thought of all the tests, the doctors, the disbelief on their faces and the distrust I had begun to feel for them.

Dear God…

Not again.

]]> http://twentyorsomething.com/2012/05/06/ticked-off-part-1/feed/ 5 http://twentyorsomething.com/2012/04/03/are-you-there-god/ http://twentyorsomething.com/2012/04/03/are-you-there-god/#comments Wed, 04 Apr 2012 02:46:50 +0000 Susan Pogorzelski http://twentyorsomething.com/?p=4919

Dear God,

It’s been awhile, hasn’t it? It’s been so long that I hardly know how to begin, and I wonder briefly if we might be strangers again.

Remember when Grandma died? I was so angry at you — so, so angry. And then Lucy died and the boys passed and Grandpa was gone, and that anger was replaced by an overwhelming sadness; suddenly, there was such an emptiness inside of me. I didn’t have them and I didn’t have you and that loneliness was almost unbearable.

I looked for you.

I remember it was the day before Christmas when I decided to take a drive to the church in my parents’ neighborhood. And I sat alone in my car, only a few empty cars scattered across the lot. And I stared up at the stained glass window, at the cross atop the steeple, and I tried to find you. I tried to find you, but you weren’t there.

I remember during the warm spring days I would leave the chatter of the house behind and sit outside on the back porch, reclining so that my only view was of the blue sky and the clouds appearing through the  branches of the trees that were just beginning to sprout green buds. I tried to find you there, tried to feel you somewhere along the breeze, but the clouds were just clouds and the breeze was just a breeze.

I tried to find you in the stars, but no matter how bright they were, they always seemed so far away. And when I tried to bring you back, I couldn’t reach you.

And I prayed. I prayed that you would forgive me for forgetting you; I prayed that I wouldn’t feel so guilty for losing you, losing myself. And I prayed that I wouldn’t feel so empty and hollow and alone.

I prayed. And I waited.

I thought, maybe you were gone for good. And my heart mourned, and I wondered how I would ever survive the grief of this loss, ever more powerful and ever more profound.

And then, I stopped talking, stopped searching for you.

I stopped.

And it was then that you began.

I found you in the tootsie roll wrapper spotted on the city sidewalk, torn and faded under the passing of heavy footsteps and nature’s own unpredictability. Just a forgotten candy wrapper — a piece of litter carelessly tossed away — it’s presence was a whisper from you.

I found you in the bright red cardinal that flew among the finches as they jumped from branch to branch along the hedge outside my back door, singing the tune I’d learned over the course of the summer after my grandpa’s passing. It was a song of comfort and peace and hope, a voice growing stronger.

I found you in Riley — in this gentle creature who epitomizes love and faith and who howls his hellos, his forget-me-nots. You were there among the quiet grey of morning as Riley curled up next to me, pressing his body against mine as a reminder that you’re both never far away. You were there when the tears came at night, when Riley’s compassionate eyes watched me, never straying as his presence protected and calmed me. You were there in the sunlit afternoons, in the pure, unbridled joy and unabashed affection of a girl and her dog.

You were there.

You were always there.

I thought that I had forgotten you, I thought that I had lost you then. And now, with so much time and silence passed between needing you then and needing you now, I fear it’s possible that you’ve forgotten me.

I don’t know how to begin.  My mind sifts through all the prayers I learned in Sunday school, but nothing seems right. Every Our Father feels too scripted and all the Hail Mary’s feel too impersonal, and I wonder how you’ll hear me if I can’t say the words.

But then I think back to that tootsie roll wrapper, that cardinal among the shrubs, the snoring dog beside me now and how you were there and you spoke to me when I was ready to listen in a language I would notice, a language I could understand.

Maybe I won’t always find you in a church — maybe you’re much closer than that.

Maybe you won’t always speak in a song — maybe a whisper is all that’s needed.

And maybe a prayer isn’t scripted in verse…

Maybe it’s as simple as you…and me.

Maybe it all starts with hello again.

Hi, God. It’s me, Susan.

I know it’s been awhile…

Let me be, was all I wanted.
Be what I am, no matter how I am.
Henry Miller, “Stand Still Like The Hummingbird”

I’m scared.

I hate that I’m scared because it makes me feel so weak when I know that I can be so strong.

But I’m scared now…It’s the thought that haunts me, and I think if I dare to voice them out-loud, maybe then I can understand the mix of emotions that has ironically left me feeling so numb.

It scares me that I can’t get up in the mornings, and when I do, it takes all of my energy to get dressed and go downstairs. And then, when I’ve made it that far, I try to push myself for what, rationally, I should be able to do, for what any healthy person should be able to do. And I think, I can let Riley out and make breakfast and pack lunch. I think, I can drive myself to work and answer the phones and work on my projects.

I think, I can do this.

But then I can’t. Sometimes, it seems to take everything I have just to get out of bed.

Sometimes, it takes every last bit of effort just to make it to the front door.

It scares me, this sense of unreality — like my mind is fighting with itself trying to distinguish the reality from the dream when everything seems like it’s passing in a haze. And when I’m at my worst, it all seems to slow down and the cobwebs get that much thicker, like I’m in the middle of waking from a long sleep, though I’ve been awake the whole time.

It scares me to think about what’s happening to me — that my body is attacking itself in physical ways, that the body can be so strong yet so vulnerable.

It’s this fragility of the mind, though, that scares me most.

I’m scared for how this is affecting every aspect of my life. I’m scared that I’m disappointing everyone around me, feeling like I’m failing those I love and respect when all I want to do is get back to the person who breathes in the joy of this life, who is motivated and focused and strives to succeed and make every moment full of love and laughter and memory.

I’m scared that I can’t do my job. I’m scared that I might lose my job.

I’m scared that I might see dreams I’ve worked so hard for slip away.

I’m scared that I can’t take proper care of Riley and Mikey, of my house, of myself.

I’m scared for my parents and my family and I hate myself for putting them through this — again. Through the doctors visits and lab tests and phone calls of concern…I hate how it comforts me to have them here through it all because I wish it didn’t, I wish we didn’t have to be here at all. Somehow, I wish that I could take away their worry; somehow, I wish I could show them how grateful I am for them, how much I love them, to take care of them, instead.

It scares me that I’m pushing my friends away, alienating them when all I want to do is pull them closer and have them understand. It scares me that I feel this urge to fall back into bad habits and withdraw further into myself, cutting myself off from the world in fear when all I long to do is be a part of it again — not just going to see a movie or a run to the grocery store because that’s sometimes all I can manage, but really a part of it.

It scares me to think of the possibility that I might always feel this way, to think that I had a taste of my old life, the old me, when suddenly it was all stripped away and drained as quickly as my energy. It scares me to think that I’ll never have anyone to share a life with — because how can you share a life with someone when you don’t really feel you’re living one? How can someone see the specialness of you when it’s masked by pain and pressure and an unrelenting fatigue?

I’m scared of this feeling of defeat because I thought that I had overcome it; I’m scared of this late-night moment of self-loathing and actually believing that I may deserve this, wondering what the lesson is and will I ever learn it?

I’m scared for what’s to come — not really knowing what’s to come.

I’m scared that nothing will happen, that nothing will change, that no answers will be given.

I’m scared.

I can be strong. I know I can get better and I know we’re finding answers.

And I know I have people to help me through it — family and friends and colleagues and doctors who are on my side now. I know there are those I can lean on and depend on, those who know how hard it is for me to need them but remain close just the same.

But right now, in this late-night hour, I need to voice these fears that I’ll lock back deep in my heart once the sun rises.

Because right now, I’m scared.

And maybe, now, it’s that fear itself that haunts me, too.