Celiac, Lyme, and Me

My vision is dim and the pain in my body pulsates to the beat of my infected, dying heart, as if it’s trying to make a point that the flesh is alive in within the punch line, but the joke is death - at least to me. I can’t get up anymore without help in cracking the joints of my legs and getting them moving again, or the more preferable option, doing it by myself, alone within a special misery that I can hide from others’ line of sight.

My new prayer is that I get cancer so that I can have something people readily understand and at least pretend to empathize with.

What’s wrong with you? You look fine!

Unfortunately, the parasites in my brain, heart, liver, and spinal cord have officially taken over like a demon whispering incessantly, “Kill yourself, you’re already dead!” I think about it and it makes sense, after all, it is my brain. It has full control of thoughts, motor skills, and PAIN SENSORS that it loves to turn to full blast.

But I’m insane. Chronic Lyme does not exist. I have a psychiatric disorder with perhaps rheumatoid arthritis and fibromyalgia and chronic fatigue and… and… That’s a good doctor. Preach it! But don’t worry about living it. You stand there in your health and constantly changing books pointing your square finger down at me and the piles of positive lab reports and years of scientific evidence reporting that there is something amiss in my body.

Yet, I don’t need the doctor’s approval or the undeniable lab reports that this parasite is killing me. My body I can no longer control, nor can I even control my own memories and emotions or responses. You have stolen my body and my mind, but my heart, the metaphorical one, it shines brighter than the sun.

My mind is in chaos and in despair, by body moves or doesn’t move without a whisper of direction from me, but beneath your control, I am here, hidden beneath the tears of physical and emotive suffering.

I am Abby and my heart is full of love, hope, and faith. I love my husband who endures me and the diseases version of me, along with all my friends who support me. I hope for an answer and treatment that will work so that I can be my heart at all times. I have faith that we can change the system and that our dying voice will be heard over the patent-money-grubbing pharmaceuticals, universities, and doctors.

Some of us are prisoners of our diseases, but close your eyes and search for you, the image stamped within you that no disease can touch. We are dying and we are temporarily forgotten, but let us raise our voices from our untouched joy and love and fight back. Fight back every doctor who refused to listen, every family member who called you lazy, every friend who was angry because you could not go out that night, and most importantly fight against you. Don’t give up the hourly battle of drowning this disease with love in your heart.

I don’t know if it’s possible. There’s not a day that goes by, as of late, where I don’t think about dying or committing a crime so that I could get rest and medical care in prison. I don’t know if we will all survive treatment and peril of the disease itself, but I do know we are still there, beneath the herxes, uncontrolled jerks, fevers, pain, headaches, depression, fear, anxiety, and a whole host of many other horrible sufferings.

Lyme is a bacteria, but you’re a daughter or a son, a father or mother, a brother or sister, a best friend, a spouse, a lover - you are love, hope, faith, and joy.

I need this reminder more than anyone. We will not learn to support our kidnapper, we will fight it. We will fight Lyme every day by finding ourselves and sharing us with someone we love. Our dying voices will be heard over the money grubbers by the propagation of the love within us.

Do not give up and never stop searching for yourself beneath the layers of suffering. We will fight and the next generation will heal.

I love going to Comic-Con. I love the dusty-with-a-hint-of-butterscotch scent of comics, I love the camaraderie, the love of loving something. Although I go exclusively for indie comics, mainly Drawn&Quarterly, I enjoy the big Hollywood stuff too. Basically, it is a four day Christmas of wonderment and total exhaustion. I love it and am addicted to it, the way a rat will still go after the cheese every time even though it gets electrocuted. Now, if you’ve ever been to Comic-Con, you know EXACTLY what that means. The Con is exactly that, it’s the greatest, happiest, con that you’ll happily allow. Here, take my money, my sleep, my good eating habits, and my ability to act like a normal adult sitting behind Brian Posehn while watching the premiere of Borat. It’s a con in the greatest sense of the word, but it’s a Comic Con, so it’s great.

I think that morning I got in line at 2am. It’s a part of the con: you stand in line for six to 12 hours to see someone that doesn’t show up till 4pm. It’s ok. I love it. You meet people you love and they love the Con too. There’s a great deal of love at Comic-Con. I’ve met many friends from there and I honestly cherish them all.

It was hot and horrible and I had just come off a really bad year of being super sick, surgeries, and losing a bunch of friends who were sick and tired of me being sick and tired. I had been carrying a bottle of Percocet in one pocket and a bottle of Zofran (anti-vomit meds) in the other pocket. I could drink all I wanted, but eating was tricky. I had the whole day planned out with Lara bars and pumpkin seeds. I was going to make an entire day in Hall C without a single sick hitch.

Hall C is the BIG hall where all the movie directors, producers, actors, and actresses show up. You get to see clips before anybody does (15 seconds later on the internet) and a few really drunk celebrities. It’s a good time if you like that sort of thing. We all went in at around 11am, me, my brother Trevor, and our group of friends that we met at Comic-Con: Sean, Michelle, Carl, Callum, and Kristina.

So far, the Con had been disappointing. Perhaps this might be the last one I would be attending. What a shit year. Everything that could go wrong personally had and my Christmas-Con was quickly becoming the bane of my existence. It was, of course, at this thought that I realized I had left all my meds back at the hotel. What was one bad day turning into another bad day had turned into one really horrible life. No meds meant I couldn’t eat or drink anything and that eventually my liver would protest in pain and illness. It was Comic-Con though; I wasn’t giving up my chair. Eventually, our good friends Carl, Michelle, and Callum left Hall C to go see something else and just Trevor, Sean, and Kristina remained as we waited for the Scott Pilgrim panel to start.

I was pretty excited for the panel because it had a fair amount of actors and actresses I really liked, but mostly I was psyched for Edgar Wright. I loved all of his movies and his tv show Spaced, and I just knew that he was one of us and that it was going to be a great panel. Before the panel a bunch of people were handing out buttons. Some were Scott Pilgrim buttons and others were a comic picture of Scott Pilgrim with that familiar Mario Brothers 1-UP symbol. I REALLY wanted that Scott Pilgrim button and was hoping they would pass that one out to my row because on the big screen an ominous warning read: TAKE A BUTTON PASS THEM DOWN DON’T TRADE. Don’t trade? Have we gotten to that point where we can’t even ask nicely for a trade? Obviously, we had because when our row got our 1-UP buttons, I then sheepishly looked around to see if anyone wanted to trade and everyone had their heads strictly down, holding their button prize just as a merchant might clench the last gold coin of the day. Ah well, what were you expecting?

Now it’s important to note here that I have a theory, an awful theory, but it’s mine and every therapist in the world has told me that it’s not mine, but it’s mine. It’s called precedent theory. Basically, if it’s happened in your life enough times it becomes a precedent and there’s nothing you can do to change that precedent. That’s your life. You are stuck. Basically, my precedent theory is this: if there is a way for me to lose or get hurt, that’s how it will it end. Hey! I know it’s maudlin and pathetic and not really reflective of a life of someone who was valedictorian and married to someone they’re utterly in love with — I see the gaps —but the reality is, precedent theory had become a big part of my life after being sick for such a long time. And I had been stuck in some major precedent theory for a couple years now. So the fact that I got the button I didn’t want just added to my precedent theory that everything that could go wrong will go wrong, even a button.

Now, here’s where everything changes. It doesn’t change just for that day, it changes everything. What happens next is the reason why I still see doctors even though I get the same results, it’s the reason I’ll try something I know I physically can’t do, it’s the reason why I hunted my future husband down through Google and casually Facebook messaged him after countless real life run ins (creepy or adorable? I couldn’t tell you). What happens next changes everything because every hollowed out echoing prayer, finally got a response.

Edgar Wright out of nowhere announces that whoever has the button with the comic Scott Pilgrim and the 1-UP has a free ticket, right now to see the movie with him and the entire cast, we just have to follow him. He jumps off the stage and my brother Trevor and I just look at each other while our friends Kristina and Sean are already getting up and we start to run toward Edgar so we can follow him to the theater because they didn’t announce which one. Edgar just said to follow him. We’re trying to get close to him but security is all over him and us and he’s yelling at security (which is so cool) to just leave us alone. And we start marching with Edgar as if he is our very own pied piper, there is a huge chorus of us and we go out the doors and begin to mingle with thousands outside. We continue to march for about 10 minutes, climbing the hill to the second Comic Con site, which makes perfect sense that they would play the movie there. We get to the top of the stairs and begin to look around for the Scott Pilgrim screening. At first we are mildly searching and then it becomes frantic, we discover that we lost the Edgar Wright group and ended up in another group. We immediately turn around and Trevor falls over a man’s traveling luggage, crashing so hard into the ground the pop of his knee was audible. We recover quickly with Trevor now limping, we begin to head into downtown San Diego asking everyone we can if they knew anything about the Scott Pilgrim showing. Everywhere is a dead end and as I begin to have trouble breathing with my inhaler safely stowed with my other medicine, I realize: this is life. It’s a big exciting letdown and I don’t want to have anything to do with it anymore. I could feel the pain in my liver, and I think I either wanted to or did throw up in a public garbage can. It’s a mostly hazy experience, muddled with real physical pain and disappointment that precedent theory was true. But we kept going. My brother, Trevor, wouldn’t stop. He kept asking people, looking on his phone trying to figure out what was the most probable theater, and he just kept moving AND I just kept moving with him. We all just kept going, in a hopeless march to the emerald city. I remember Kristina and Sean cheering us all on and it is beautiful in retrospect, but I was far too miserable to allow myself to feel it.

Suddenly, we see him. Edgar Wright’s in the distance waving us on, apologizing to people for all the confusion, shaking hands, thanking everyone, sweating ever so slightly in his black suit beneath the San Diego sun. Then it’s our turn and I show Edgar the button I so despised just moments earlier and he smiles at me, thanks me, and gives me a hi-five. Not just a flat handed hi-five, but the kind you get at the end of the movie Rudy, where they hit your hand and hold onto your hand for a couple of seconds.

That hi-five disintegrates a lot of spiteful murderous hatred I had for myself. For one, I’m wrong a lot of the time. I don’t always see what is so great about what I have and instead sheepishly peek at all the things I think I want, but would actually disappoint me. Second, I have to keep trying. No matter how lost I am, I’ve got to find good people to surround me and I have to keep going forward and seeing new doctors (I’m up to hundreds) and trying new medications (way into the thousands).

The rest of the night is amazing. We see the movie, which is fantastic, and we see the cast again, and The Metric comes out and plays a show for us! It’s an absolute fantasy world come to life. Yes, about half way through The Metric show I go to bathroom and puke everything from my feet up. I’m barely conscious as we walk back to the hotel. I think (?) Sean and Trevor do that drunk “one arm on each guy / dragging me back” sort of thing. I’m completely out of it and yet completely blissful. They drop me off at the hotel and I enter a Percocet coma, but not before I hold my 1-UP button in my hand and take a picture.

Later that year I was going to see a big shot doctor (the last doctor I saw right before I saw the doctor who diagnosed me with celiac) and I was scared to death. I knew she wouldn’t believe me and that it wouldn’t matter; I was terrified. I called my brother for some advice and he reminded me how I never thought we’d make it to the theater but we did. He told me that I just had to keep trying. So I took that button and put it in my pocket for the appointment. She was an awful doctor, but when I left, I realized there were other chances and doctors, AND the next doctor was my 1-UP doctor.

I don’t know why this meant so much to me. It’s really a silly story, I know that. It’s a movie and some director I’ll never meet (again). I think at the end of the day, it was an experience that happened at a really bad time in my life, and my friends and brother there to support me during a really sick time. It taught me that no matter how badly I might want to die or even how close to physical death I am, there’s always some extra life waiting. That’s what we have to remember, no matter how bad it gets, no matter how hard it is, no matter how the pain might sear through your body, there’s more actual life waiting, 1-UP kind of life: the kind of life that gives you hope and strength to keep moving forward.

Doctors have great answers to questions. I am reminded of this from an experience today.

Me: do you think the neurological issues might be neurological Lyme?

Dr: No, no, you’d have other symptoms like imbalance and pain in other parts of your body.

Me: Like the leg pain I have at night and the vertigo medication you put me on?

Dr: Yes, precisely.

End of conversation.

Here are a few more.

After 13 missed spinal taps

Me: Are you new to this?

Dr: Nope, always get it on my second time. Guess you’re lucky 13!

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Me: Can I have a blue bag?

Dr: There’s no way you’ll throw up with that many I.V. nausea meds, you’re fine.

Me: *vomit* (sadly not on him)

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Me: Can I get a comb or soap or something?

Nurse: Yeah, we can’t give you those items, you might kill yourself. Also, the water only comes on for 45 seconds then stops for five minutes, and then you get another 45 seconds, so you don’t try to drown yourself.

Me: So since I’d just get barely wet without soap can I skip the shower?

Nurse: No, no, no, you need to be clean. It gives you a sense of purpose.

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Me to an orderly: Do you know what time dinner is?

Orderly: We’re not allowed to talk to patients.

(They really can’t. They’re like British guards.)

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Me: I know the report didn’t come back saying cancer like you thought but it said that it’s 85% inflamed with linear cuts. Do you think that means anything?

Dr: Honestly, if it doesn’t show cancer, I don’t give a shit cause you’re going to live at least 6 more months which is when I retire. Come back in 3 months for your followup.

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Me: What’s the first test you’d like to perform?

Dr: A drug test. Your behavior is drug seeking and you seem like you’ve been in low dose opiates for awhile.

Me: Well, I have. I’ve been in the hospital for three weeks on morphine and they transferred me to you.

Dr: Huh…

*phone rings*

Dr: One moment. (Picks up phone and proceeds to tell patient for 20 minutes that he has 3 weeks left to live)

I never went back to her and I’ve refused to pay the bill.

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Me: What do you think it is, doc?

Dr: I thinks it’s this rare disease I had right at your age and they missed it for weeks. You’ve been to Africa lately?

Me: Nope

Dr: Yup! That’s what you have.

Turned out to be regular old gallstones.

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Me (to my surgeon): What’s wrong? You seem somber.

Dr: I have three lawsuits against me for malpractice and I can’t stop smoking.

(He’s actually a great surgeon.)

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My mom (I was 10): Does she need glasses?

Eye Dr: I think your daughter is crying out for help and needs to be seen by psychologist immediately. I wouldn’t leave her alone without supervision.

Turns out I had a weird astigmatism, but his response is still my favorite.

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There are hundreds, maybe a thousand more dismissive examples. I know they’re human too and we all have off days, but I’m pointing out the arrogance that we allow them to have.

I think of this lovely nurse who saw me wriggle around in pain and asked me how I was. I knew that in order to get more narcotics, they had to wake up the doc and I didn’t want to do that. She did it any way. She was intuitive and kind and I’ll never forget how she sweetly scolded me for not being honest. I can think of one out of hundreds of doctors in my life who has treated me like that nurse: with compassion, workmanship, and human decency. I know it’s hard and I get that there’s a lot on your plate. But rid yourself of your arrogance and fear of not knowing the cure, and just treat your patients with belief and understanding. If you did that, I don’t know if your patients would be cured at a higher rate, but I guarantee that the internal comfort that resides in all of us, the one that gives us that calming NyQuil feeling of, “Yes! Someone just heard me!” would go up. I’ve been in the sick business for 22 years now and I can assure you being heard > pharmaceuticals.

The first time I heard Cat Stevens’s “Miles from Nowhere” was as a freshman in college. I went home for the weekend because no one was there and I figured a quiet atmosphere would be more suitable for studying. So I spent the weekend camped out on the couch flipping through the brand new movie channels my folks had just added, since it was only the two of them again, and I caught the beginning of a movie called HAROLD AND MAUDE.

I read the description and a 20-something man / 80-year-old lady love story didn’t initially appeal to me. After all, here I was 19 and perpetually single and this 80-year-old got herself a 20-year-old guy: did I really want to depress myself further? However, a young fellow faking suicide after suicide ABSOLUTELY appealed to me and I was immediately hooked. A rare few films help take my constant pain and the rest of the world away, and it’s just me and the movie in a world of our own, floating in space: a painless peace. No doubt, HAROLD AND MAUDE became one of those movies that day. I was captivated by Maude’s every word, just as Harold was, and empathized with Harold’s lost boy / Neverland conundrum. I was so grateful the house was empty, because I stood in the middle of that room, sobbing with my hands in the air, declaring Hal Ashby to be the greatest director all time, as I sobbed and sobbed and sobbed.

If you have never seen HAROLD AND MAUDE I suggest you stop reading and go watch it. Really. I’m very quite serious. Just go. Go now. Go watch it. I promise, it’s really great. Go now.

Ok, now that we’ve all seen it…

At the time I had no idea why I sobbed for so long with that choking breathless misery that only comes from deep, hollowed-out pain, and it took me a long time to figure it out, Really, I didn’t want to figure it out and ruin its beauty with my usual destructive detailed introspection. Over the years, though, as I’ve been able to escape my own Neverland of the early 20’s, it’s become obvious. To me Harold is the hero, not A hero, but THE hero, maybe my hero. All of these hospital visits and near death experiences have really been nothing more that Harold’s own suicidal plays and acts. Mine were real, but to Harold and what he was experiencing, they were no less real. And then when Maude died and life couldn’t have been any worse or lonely, much like when it all feels the worse for me (and it does currently, on medical leave, husband on medical leave too, no income, so many drugs I forget to take them all precisely, pain, unending pain, Lyme deniers, etc) he just drove off a cliff and it was all over, well, not his life, but the suicide tricks, the pain he let built up, it was gone, and he ended it, and then he danced and lived his life. I don’t know where my cliff is or which is going to find it so I can drive the Lyme full speed right off and watch it crash and burn and be able to dance myself atop the death of this disease, but I do believe that cliff is somewhere, even if it does feel like I’m miles from nowhere.

Sometimes I cry because I’m just sad and the only other time I cry is when a secret weight that I didn’t dare share with anyone comes true, like when I cried at my wedding because I never really thought I’d meet a man who would love me in sickness and in the health we’ve yet to experience. I sobbed at the end of the movie because as grumpy and negative as I act, I secretly hope all these diseases will crash and burn and it’s very, very scary to hope that.

If you have a chronically ill friend, remember it’s harder for them to believe that life exists and so much easier for them to believe in death. For my chronically ill friends out there, I know we’re closer to death than life. I know you feel the pull and the beg of it - its kind offer of a painless, sober tomorrow. I’m with you so I don’t have any comforting words. However, I do believe that if you keep fighting, that if you do let those that believe you love you and take care of you too, and if you tell every single doctor that brushes you off that they are a sham and a shame to their profession, that your secret hope, the one you don’t utter because the gates would flood, might come true and let you dance in health and “if you want to be free, be free, cause there’s a million ways to be.” You don’t just have to be sick, you can be healthy and then you can be anything, but please, don’t let the worse days make you stop fighting. Gather your friends and family and fight all the harder.

I think the first time we all met, Celiac, Lyme, and myself, was around the age of ten. I had been living as an undiagnosed Celiac for about 2 years and the equally undiagnosed Lyme disease (with Bartonella) had just started its slow descent, burrowing it’s way into my young joints and brain. Of course, I had no idea any of this was happening. As far as the medical community was concerned, I had an intense amount of anxiety which psychosomatically gave me stomach aches and I caused myself to vomit and chronically cough because I desired more attention. The eye doctor also suggested to my parents that I get psychiatric treatment - he could not find anything to substantiate my blurred vision claims and I was too insistent for it to be anything but an alarming cry for attention. The allergist specialist did diagnose me with severe allergies (I tested positive for all 256 shots that he tested me for) and chronic asthma. So there was that… win?

Anyone who has spent anytime with Celiac or Lyme knows that I, in fact, wanted nothing to do with the attention of anyone else. I was exhausted, in pain, sensitive to light and sound, irritable, and constantly paranoid of the people and circumstances of everyday life. It was ten when I learned that if you wanted to be taken seriously and thus left alone, you lied, about everything. I lied about how I was feeling, what I was thinking, why I squeezed my eyes shut all the time, and the most constant lie of all, the infinite, uncontrollable thoughts of suicide, like scenes on a screen I was forced to watch. One big Clockwork Orange experiment, all day, everyday. I was ten when Celiac Disease, Lyme Disease, and I met and we quickly became secret cell mates, banding together just to keep it together, and to keep our prison parade from everyone else.

Why would I personify these diseases? Is it not the popular philosophy to refuse to claim the existence of negativity and shut one’s eyes and stopper one’s ears until one day it gets white washed by the dawning sun of a new day? Well, that IS the popular philosophy (trust me, I have many a short poem and long-winded book given to me whenever I would go through a “rough patch” declaring this), but it doesn’t work so well. For one, I can’t say that Celiac and Lyme have all been negative.

I will never forget the summer of ‘94 because I discovered the one thing that burned out the projector bulb in my mind. It was summer, New England summer, so the waves of heat were coupled with a hot dew that collected exponentially. I was in the television room with my body pressed up against the cool wooden floor as the ceiling fan droned on above me, circulating the heat. Again, I was ten and this was my first summer ever watching MTV, so I had the station playing softly in the summer background, hoping for Beck’s “Loser” or The Breeders’ “Cannonball” and instead I was getting (what I can only guess at, as my memory is fairly shot) Candlebox and The Offspring. I just laid there, looking away from the television, watching the screen in my mind, when that uncontrollable cinema vérité abruptly snapped at the sound of three repeating electric notes. I let the silence of my brain wash over me and I felt that elusive emotion of no motion at. all. whatsoever. It was euphoric, blissful, and utterly unexpected. Finally, I pulled my sticky face from those crisp wooden slabs and looked up at the television, only somewhat terrified that motion would ruin the moment. I saw four people painting an ice cream truck and one of them was even a boy in a dress - how novel! I was Saul whose demons had been silenced by David’s harp, except my harp was an electric guitar and David was a Chicago based grunge band, The Smashing Pumpkins. This moment started a dam bursting sequence of events in my life that involved every penny to my name and the local record store. Although, nothing quite takes away the mind numbing pain like a morphine drip, music was the best thing to ever happen to the pain and I suspect that it’s greatness is directly proportional to the pain. And for that, as dysfunctional as it might sound, I’m grateful to Celiac and Lyme for the grandiose experiences of silence, but I’m not too far gone to also loathe it for the bent depths of darkness that have dragged me down.

Now that dichotomy is just the thing and the crux of why I’m writing this all down: to this day I don’t know if Celiac, Lyme, or I love music. I’ve been sick for so long, lied about the pain for so long, and have made adjustments just to survive for so long that I haven’t a clue as to where I begin and the diseases and repair attempts end. Even if no one reads this, I have to write it, if only to figure out if Lyme loves Carol King’s “So Far Away” or if I do.

I would love to have you reading along the way - share your stories, share with friends who are being ignored by their doctors, and to, obviously, share your favorite sad songs. Your company and support as I go through treatment for the Lyme and Bartonella would be greatly appreciated as it is a get worse to get better solution and I have no idea how many more Carol King songs Lyme will download off of iTunes before this is all said and done.

I will do my best to keep this updated with past medical horror stories and current treatment stories to placate the voyeur in us all. However, I do apologize for wrong words, incorrect grammar, misspelling, choppy prose, and historical inaccuracies which will most likely be a staple here. I have a shoddy memory, very blurred vision, and treatment has slowed my cognitive ability to a third grade arithmetic level, but I’ve got to keep going. I refuse to get completely lost beneath the Celiac and the Lyme, and although I’ll acknowledge their presence, for now it has to be an equal playing field of the Celiac, Lyme, and me.