October 2008 archive

A Desert of Questions

I have lived in a sweets shop and eaten candy all my life and yesterday I was thrown into a textile mill of worries and anger. I think this time, Lyme has gone far enough. I will forever and irrevocably loathe it till kingdom come and I be done. If I could hold onto a grudge for long.
The mind is a fickle friend. No, I lie, it is not a friend. It is the Godfather of the body and it both respects it and loathes it and fears it. But it knows the best of any how to get you worst. It knows your weakness. It knows you very well. It keeps you closer than an enemy or a friend. It knows the memory is what we cherish, and pain, sorrow and loneliness is what we fear. It blocks important memories when you need them most, gives you pain when your happy, makes your tongue say stupid things to give you sorrow and laughs at your loneliness. ‘You are not lonely. You have me. Brain. Godfather.’, the brain would say if it could talk. 
It has hit me deepest of all. I did not know my brain wanted to wage such a vendetta against me, and it most likely wouldn’t have without outside help. Lyme is trickier than even the Godfather and convinced him to make some wiring changes. Tweak things. Make it easier for Lyme to get closer. 
Godfather and Lyme plotted to erase my father. And their plot was so effortlessly strategize and carried out that I didn’t see it coming and couldn’t have prevented it. 
Ladies and Gentleman, do not let Lyme take a bow. He has not won.
He. Will. No. Win.
He can take everything from me and he still will be despicable and a piece of dirt on the sole of my shoe. And I step on dirt and wash it away and I will do the same to Lyme.
Ladies and Gentlemen, I do not remember my father. The man who I’ve know longer than any and better than any I will ever know. I know not of what we have done, where we have been or seen together. I do not know his name. I do not know where he works. I can’t picture him. He is gone. Somethings I remember. Vaguely. Like someone’s best-friends-sisters-boyfriend that you met once at a wedding/funeral/party/street-meeting. My memory is fuzzy.
I know I should love him, blow him kisses as we sign off the phone, tell him I miss him. But I do not know him. I don’t love strangers (as a rule) , kiss strangers (as a looser rule), or tell strangers I miss them because I do not know them. I still blow him kisses and tell him I miss him and love him. I ask the general small talk questions.
I would like to tell you all that my dad and I were close. That he played games with me and had a warm laugh and loved wine and cooking and listened to the music I liked in the early morning school rides. But I do not know for sure. I know nothing.
It feels like half of my ties to this world that I love are gone. Like there is a whole inside my heart and mind and I know what is supposed to fill the whole but can’t seem to locate it. Its being hungry but not remembering food is to fill it, and instead chew on glass and rubber tires and sorrow. 
Where is the saving grace? 
I am alive. I remember Mommy. I have a ceiling above me and a floor below and food in my belly and love all around.
Those are saving graces.
I know I love you that much, Daddy. And I know you love me. And I feel like a bad daughter to forget. But its not me. Just know its not me. Its the Godfather figure masquerading as my brain and a clever fellow called Lyme. I love you Daddy.
I am half like a toddler who stubbornly cries for Daddy and then when Mommy walks upstairs to where you sleep and asks what’s wrong, you say “I wanted Daddy, not you”.
But I’m not. Cause I want Mommy and Daddy. Is that too much to ask. It is too much to ask the Godfather to spare me mercy this time and let me have what I want. It is a small request. I will double whatever Lyme is paying you to erase Daddy.

I feel there is no oasis, not now. And there was not one yesterday, or the day before yesterday or tomorrow. I am certain. There is an desert of questions and untouchable memories and I am a thirsty nomad just looking for a drink. But I didn’t come to the desert, I was home and wandered and wandered and wandered, following signs and advice from tourists, calling down from the safety of their hot air balloons passing over head. They’d cry, “There is water this way! Follow!” or “Home is this way! Turn around! You are headed the wrong way!”. And each time I was directed, I was misdirected, and each time I followed a sign, it pointed me in the wrong direction. So now I have blown into the desert and I am still searching for another sign, another tourist to point me to an oasis. If you wander far enough, if you travel long enough, if you struggle enough, if you see enough and learn enough you will find an oasis. 

But I will stumble upon an oasis. And when I do, it will be filled with the smell of your blankets in the bed you’ve slept in for years, salty tears, jaw-stretching grins and laughter that will hurt and make you cry some more, memories, grass mowed down like a brush cut and mangoes. It will be filled with water. It will be filled with lifeblood. It will be full to the brim with an old memory. And that was worth all the stumbling in the desert for. 

A New Perspective

I’m really unremarkable. Just a nose, eyes, lips, curls…the usual right? So why is it that everyone stares? Honestly…

And I don’t mean just a glance-over-once-or-twice-when-you-think-they-aren’t-looking or the extended gazes staring or the speaker on stage staring either. I mean like flat out gawking. 
I’m still the same girl I was a week ago and 6 months ago. Practically the same girl. I mean, besides the IV, occasional weight yo-yos, hair cuts, drop of 2 feet, different eye liner color…wait. OH!- just struck my thesis head on. I just fell across it so artfully that you might have almost believed that I was thinking this and writing this as I go along, which I almost am incidentally. 
I think it’s not ’cause I’m Caucasian in a town of such a culture mix, I don’t think it’s because of my ‘striking beauty’. I don’t think it’s ’cause of the way I talk or look or walk, which is why they SHOULD be staring, really, if at all. It’s because I’m suddenly two heads shorter than the rest of them and I’m seeing eye to eye with toddlers. It’s ’cause I’m sitting down and wheeling around. It’s SO ’cause I’m in a wheelchair and that’s so NOT the reason I wanted.
I walk…well no…let me rephrase that-> I get pushed around the supermarket and people straight up stop and stare. It’s like some freaked out fire drill: stop, drop and roll. I can see their eye widen and I’m like ‘what’? I want to turn around in my seat and then turn back and shrug my shoulders. But as most genius thoughts occur, they occur too late. But next time. 
And the stares, it’s not just people my own age…it’s grown ups. I often wonder if they haven’t seen a sick kid before. Honestly, you’ve got to wonder if they shut up disabled people here if someone genuinely hasn’t seen someone in a wheelchair before. 
Honestly! The nerve of some people! I feel like I aught to wear a sign and a mirror to deflect stares and questions. Its so awkward. It makes me so…aware shall we say…that I AM in a wheelchair. I didn’t feel like that back home. 
It is strange to be in a country you once called home and now feel like…feel…and now feel like something has changed for the worst and it’s spoiled your memory. It’s made me question how I viewed disabled people before this. They’re just people, right? I mean what is the point of staring?
I should just wear bright purple and green leggings and a yellow jean skirt and put dreads in my hair and wear a coral tube top and a parka and I think they would stare less. Really…
I swear it’s ’cause I’ve effortlessly manipulated people into pushing me around since I’m too lazy to walk. HA! -> as if. But hey, who am I to judge? 

Bite the Bullet

Fact. It is time. I think the world could be ready. Could be ready for the facts.

The time is right for some hard, cruel bullets. Bullet points.
-Lyme Disease is passed along by tick bites and is found all across the USA and Canada and around the world. It knows no boundaries or borders and respects no laws. It’s an outlaw and the most dangerous type: no one is hunting it. 
-Less than half of patients with Lyme remember a tick bite. Again, about 50% get the characteristic ‘rash’ which many doctors perceive as the telltale sign of Lyme. So much for a dead give away. 
-The standard test for Lyme Disease that you would get from your regular GP misses 35% of the time to recognize the disease. I was tested and my test came back negative on this test. A ‘screening’ test SHOULD have at least have 95% sensitivity in order to call it such. 
-Currently, there are 5 species of Lyme, and over 100 strands in the USA, and 300 worldwide. The number continues to grow rapidly. 
-Although your doctor will only generally prescribe 30 days of antibiotics for a conclusive diagnosis of Lyme Disease, never has there been a study proving that 30 days of antibiotics  is enough to cure Lyme. It is clear that it does not eradicate the disease and if not treated for more than the 30 days, the relapse rate is upwards of 40%! Long term antibiotics work. It is the only way for me to get better. Long term IV works! It is the way I will get better. Anyone who says otherwise hasn’t been there and clearly hasn’t met people who have. 
-For many Lyme patients, the journey to health can take 1-4 years. Relapses occur and more antibiotics might be needed. 
-Lyme, like Syphilis, mimics a great number of diseases such as arthritis, MS, ALS, depression, type 2 diabetes, , ADHD, , HIV, rheumatic fever, SLE, Arrythmia, Arthralgias, Autoimmune Diseases, Chronic Fatigue Syndrome, Fibromyalgia, Depression, Parkinson’s, Sleeping Disorders, Alzheimer’s,  Irritable Bowel Syndrome, Scleroderma, Peripheral Neuropathy, Bell’s palsy, meningitis and many more. Scary? Some doctors believe that ALS could actually be very late stage Lyme. The final stage actually. Imagine thinking you are dying of ALS and then being told that high dose med’s could have saved you a hell of a lot of suffering. Imagine being in pain and suffering for 20 years and thinking that you just had chronic fatigue or some mystery illness and nothing would change. Imagine how angry you’d be. 
I feel like I could write a poem, like little kids do when forced to write about something specific, with the title, “Lyme Disease is…” the way they may have written, “fall is…” or “love is…” or “school is…”. I could put just as much fact and observation in my poem as small children do. I like to just use facts sometimes, you know? Just put away all the personal knowledge and stick with facts, ’cause they hurt less and you don’t have to dig them out of some void and put all the feelings into words. Cause it’s so much easier not to tap into that void and let it fester in the meantime. It’s nicer to think that you don’t have to think about it now. But if you don’t think about it now, it will crop up later and it will have had time to get nasty. And old. And that’s the worst. “Lyme disease is…” well what is it, at least to me?
Lyme disease is waking up in a room you’ve been in for a month and not recognizing it. Lyme disease is not being able to walk 5 steps to brush your teeth. Lyme disease is needing to call someone to fill your water bottle, pick up a pen off the ground, pass you a scarf, help you take off a sweater, feed you. Lyme disease is sitting awake all night with terrifying visions for company. Lyme disease is screaming so loud from pain that nothing comes out. Lyme disease is ending up somewhere and not knowing how you got there. Lyme disease is a pain in your joints that makes it impossible to make a fist, or move fast. Lyme disease is being so confused and angry and scared and in such an impenetrably scary hallucination that you want to rip the IV out of your arm, with no thought of the pain or blood or consequence. Lyme disease is living for the moment because that’s all you’ve got. Lyme disease is blood draws and needles and picc lines and scans and tests and such. Lyme disease is tasting sadness and longing in every mouthful. Lyme disease is chill and fever. Lyme disease is frustration and ignorance and fear. Lyme disease is being dragged across a continent to get help when you have free health care at home. Lyme disease is new and old and complex and deep. 
Lyme disease is a disease and is what I have and is not who I am. 
Lyme disease is…
Lyme disease is…
Lyme disease is…
Lyme disease is a chance to change and stand up for what is right and not medical dictatorship or it won’t be much longer. 
Lyme disease is a time, a place, a feeling, a life, a sorrow, a calling, a chance, and a change.
It is a little world and it calls me home. 
News flash: it has been given a final notice.
News flash: it’s been sent packing.
News flash: it’s as good as gone, soon enough.
New flash: Lyme will be evicted from my bones.

A Labyrinth

Yesterday (or was it the day before…) we stayed overnight in a hotel because the next day I had to go to a pain doctor. I’m not entirely sure what he said, but I now understand that nerve pain is a very complex pain and there is no ‘right’ or ‘good’ way to treat it, but some things help. I so was looking more for a quick cure, an easy fix, something that would just numb me to the core and take me out of this pain. But the fast patch jobs never last long and don’t ‘deal with the problem’. And that, my friends, we know sucks. Majorly.

There is only the straight and narrow version for describing ‘dealing with the problem’ right now and it more than sucks. Its a deep kind of disappointment and bitter realization that a cup of tea and a triple chocolate muffin can’t quite fix.
And, that is SO not what I wanted to hear.
I want to hear exactly what I feel will work.
This isn’t a world of Care Bears and rainbows, of frolicking and innocence, and deep-fried chocolate sugar coatings. We sure don’t have a utilitarian government, or, some would argue, even a wholly democratic government. 
We have what we are given, what we take, earn or even choose to believe. And if we don’t like that lot, we make a change. We embody a change. We breath it until we fully believe it and make others. 
I’m working at it. I don’t like this lot at all quite frankly and plan on making change. I believe I can, and now, like butter-cream frosting on a rather reluctant chocolate cake, we’ve got to spread the truth and make the change. Before the lies and ignorance changes you. I live and breath and play and run and laugh like the rest. But if it could change me, it sure as hell could change you. Call it cliche. But if you aren’t sitting in my chair, don’t call it cliche. 
And that is the straight and narrow.  

Love Won the World Over

Now is a great time for me to find out about the potential risk for gallstones with the high-dose of antibiotics I’m on. Of course they told me but I obviously forgot, so when they took me in to have an ultrasound today, I was surprised and happy to be told I don’t have gallstones. Phew. I mean just one more think to go wrong right?

I have to have ultrasounds once a month! And blood draws every two weeks! Seriously, ever time they draw blood, I want to cry something like ‘Do you know how much it cost to put all that stuff in me and you’re just taking it out?’ Honestly, with the combination of painkillers, antibiotics, and a shit-load of vitamins, they could SELL my blood for a premium price. If I gave blood, the person who got the transfusion would get a healthy amount of drugs…a ‘lil boost. 
Honestly…
I also had my dressings changed on my IV which is always nice ’cause it feels all clean and, you know, it always looks better when there isn’t a little bit of dried blood caked around it. Nice, I know. I really am trying to work on my adjectives, so that when doctors or friends ask the classic ‘how are you’  or ‘what is the problem today’ or something else that I’d really rather not be asked,  I have a wonderful arsenal of words, as to sound cold and totally pissed off that they asked. Not really, but sometimes I feel like that. I felt in the first few appointments, that they were honest to God trying to get blood out of a rock for all the words I could come up with. I thought I’d better practice in my mind so next time, I don’t have to stumble through “bad” and “painful” or “icky” and really use some kick-ass words.
It comes to mind that, beyond the pain and general sick feelings, I feel deep down a sadness. That I’m here and you’re there. That I’m stuck here and you’re still there. And that this TOTALLY is taking an inordinate amount of time. This ’empty’ feeling hits me often and makes me feel that I love you guys an infinite times the world over. 
This feeling, of being lost, and stuck, and lonely, and sad, and overwhelmed, is by far, the deepest, worst, intolerable agony of all. 

It’s so hard to wrap my head around…

I flat out just want to be home. I would give up on this (so easily) to be home and laugh on the beach and just get a hug and kiss. I want to be real and keep it real. I want to leave go of it all and just walk out on something that’s so wrapped around me that I just can shake it loose, not even dancing hardcore. 

I want to go AWOL.
I want to run.
It would be a relief.  
But I can’t just run away with a problem, because I’ve found that they somehow pack it up into your suitcase too and your in a new place with the same problems. You must fix the problem and change your mind or the problem will just follow you to the ends of the earth. 
I am being stalked. By something the majority of the people do not believe exist. Or not at least the way I’ve got it. And that is scary.
You should be scared. As cliche as it sounds, it could be you next. And you would have to face a world of doctors who dismiss you and make you out to be insane or suffering from something completely archaic. You’re alone and your up against an institution that is so well regarded. Generally. 
There is more Lyme cases than AIDS. 
I cannot give blood if I have AIDS or other infectious diseases, but I could be sicker than hell and walk into the Red Cross and pull up my left sleeve and say, “Go for it…oh and by the way, in case you want to know why the wheelchair and IV in the left crook of my arm, I have Lyme. My list of symptoms would blow you away and take a page and a bit of your paper there. But no worries, right? I can give blood, although I have an infectious, horrible disease that is transferrable via blood….oh like AID’s or it’s cousin syphilis. Right. But its cool. You are a non believer. And just like the Christians think, you will be proved wrong on judgement day or sooner.” 
Where did the medical take a turn and stop helping people? People like me who a falling downhill faster than those Olympic skiiers. Where did we go wrong? 
But more importantly, how are we gonna get back to good?

To Fall and Get Up

I fell. 
Just now I thought I could walk to the bathroom myself, less than 6 yards away, versus get up, get into the chair and go. And then repeated in reverse. I got about a few steps and I got that hot feeling. Like you’re embarrassed and you feel the heat creeping up your neck into your cheeks. The world looks like somebody stuck it in the blender and slowly swirled it up. I’m a small boat on a rough ocean, swaying, swaying, swaying into blackness. Until, I become aware that my body is against something rough, something very solid and I find myself even with the horizon. It takes a few heart beats until the pain kicks in.
I am in such intense pain that the slightest brush of a hand or a gentle hug makes me faint from agony. You can imagine how a fall from 5’7 and 3/4 would feel.
But you move on.
Or in my case you forget. Its so hard to hold a grudge these days, let me tell you…

But that’s how you do it. You just keep picking yourself up off of the floor and moving along again. That’s the only way to move is to move forward.

Heart Broken: Girl Loses First Love

My favorite part of fall and winter is the fashion. The only saving grace from the cold is the nice neutral earth tones, sweaters and of course boots!

Today I donned booties and grabbed a few sweaters. Today’s goal: ‘West Rock National Park’. It looks like Australia’s red rocks to me and looms over the city of New Haven. It’s stunning and you can see for miles and miles around, even to the distant ocean if you can believe it. 
It’s been awhile since I’ve been able to see so far ahead. It’s been so long since I could see the ‘whole’ of something with few missing parts. All around, each beautiful tree screaming color louder than the rest. 
I now have a fear of nature, of grass and even those beautiful yellow maples and the hills and valleys. I was the little child of San Francisco, begging her daddy to take her to Point Reyes, the park or another outdoor destination. I was the child who wildly ran with her friend down the dirt path, down a mountain, screaming. I was the girl lying in the grass, hiking all over East Sooke, playing all over the mossy rocks, following the same paths deer took, picking wild blackberries and running through high grass.
I was that girl. She loved nature.
She was clueless.
That same girl now sits in the car at stunning national parks and tells everyone in the car not to get out and explore. She’s the girl who rolls down the window to take a picture, not the same one who would like to get down on her belly on the path to shoot up at the trees, the sun falling in.
I don’t know where that girl went. Somewhere between the cold winter where she first got sick, to when she couldn’t walk, to when she found out what made her sick, she lost her first love. It’ll be hard to find a replacement for the beauty of the world around her. 

To Cry Wolf

I’m going to tell you a story. It may be faintly familiar from some distant children’s fable, but I can assure you that it ends like no childrens story ought to, and it has a different moral…a very different message in a very true story. 

Once upon a time there was a little sheep. She lived in a small valley suburb with a flock of loving sheep. Each day, the little sheep would walk away from her neighborhood flock and into the city to be taught the ways of the world. With time, she found herself another flock of closest friends and grew to love them very deeply. Each day the little sheep would take the same path to and from the city, hardly ever diverting (unless there was the temptation of a nice patch of grass a little out of her regular walking path). But as the little sheep grew older, she began to explore much of the city she lived so close to and soon knew it like the back of her hoof. She could help tourists find their way and bray with laughter with her friends as they walked around the city during their free time, enjoying life. Her memories of the city she was in everyday were strong and the little sheep was confident in her directional skills. The irony was to become all to apparent.
The little sheep grew and grew and soon was visiting the city during lunch break with her friends. She walked to the gas station, to the Demi Tasse up the street, to the park and sometimes went to a grocery store to pick up a treat. One day, something was not right. The little sheep, daydreaming, wandered away from her flock and was going to meet up with them at their usual spot. The little sheep confidently walked along, treading the familiar paths until…she realized these paths weren’t familiar at all. Why she hadn’t been here before at all. Or so the little sheep thought until she really looked around. Something in the back of her mind told her that she knew this place deep down, but she was befuddled and confused as to why this old yet unfamiliar street corner befuddled and confused her! She pushed these thoughts deep into her pockets and turned around and tried to walk home. She stumbled around for the whole hour of lunch, confused. She knew where she was but the knowledge was somehow blocked from her mind. The little sheep was scared and tried to psych herself up by saying that she wasn’t insane or anything, just a daydreamer and that sort of thing happened to daydreamers from  time to time. The sheep didn’t tell her flock of friends or family what had happened.
She didn’t cry ‘WOLF’ because she was afraid of the consequence of having screamed there was a  ‘wolf’ when really it wasn’t; just a big misunderstanding. She didn’t want to make waves so she let it go.
She thought that it was a one time deal. It wouldn’t happen again.
But over the next few months, the little sheep got lost in her beloved city many times. She would arrive somewhere, not know how she got there and on top of that she would have no clue where she was. It took awhile and alot of questions to re-orientate herself before finding the right way. She was slightly unnerved but not yet willing to cry ‘wolf’ until she was certain there was a problem. She had been taught that even though you might see something coming, that didn’t mean you should take preventative measures!
That same sorry sheep wandered away from her flock without any recollection of doing such. She felt nauseous constantly, inattentive in lessons which was peculiar for such a previously studious sheep, very tired (even though she walked very little, for a sheep), she was confused often, forgot conversations mid-sentence and felt the beginnings of a dull pain. Yet the little sheep was not quite ready to yell ‘wolf’, although at that time, she had no idea of the huge wolf that lurked ahead. 
That little sheep saw so many doctors she lost count. About 10, counting walk-in’s and specialists and ER doc’s. She heard so many rumors about what she might have, but nothing concrete. The poor little sheep had so much blood taken, that she must have thought a vampire had sucked the lifeblood right out of her. She was thought to be crazy one week, anorexic the next, depressed the following and chronic fatigued after that. The doctors threw out ridiculous problems and kept passing the little sheep amongst a circle of different doctors, like teens smoking a bowl with friends. 
Finally the little sheep was so sick and her flock so angry at the medical systems failure, they took her to a neighboring country to help her.
And now, where can you find the little sheep. 
That same little sheep, who used to run and skip with her friends and laugh and drink bubble tea on hot days and make weird jokes and play music and laugh some more, that little sheep who lived so happily, was not finding her ‘ever after’. That poor little sheep couldn’t walk, every joint ached in the worst way, she had the worst insomnia and hallucinations, had excruciating pain all over her body that was a thousand times worse than she would have thought and had no memory. Her mind was a blank slate being wiped ever few minutes. She had nothing that she used to. Now this is one unhappy little sheep.
What was wrong with this sheep? What was wrong was no one cried ‘wolf’. Because she passed it off as daydreaming, because the doctors couldn’t figure it out, and because the whole country was ignorant. No one cried ‘wolf’ because no one knew why they should startle a village, because they had nothing conclusive. They couldn’t find the little sheeps’ wolf. So they let the wolf eat her. The wolf ate her alive because no one was aware of the fact that this sick little sheep was harboring a more dangerous kind of ‘wolf’, a ‘super wolf’, that when it arrived could hurt much more sneakily than a real wolf . And the most dangerous part about the ‘super wolf’ was that he wasn’t it a poor imitation in sheep skins, he wore a cloak of invisibility and could come and go as he pleased and never drew attention to himself.
Lyme is the worst kind of wolf. He is silent and deadly and knows what he’s doing. And the villagers who fled up the hill at the boys cry of ‘SUPER WOLF’ were tired of there being no wolf. They didn’t understand the cloak of invisibility and lies.
The little sheep hurt so much because of a lack of knowledge. 
Curiosity killed the cat.  
Ignorance tried to kill the sheep. 
It tried.
So cry wolf, when your gut says yell, on the off-chance that there is a monster looming over your flock.
“Creating a new theory is not like destroying an old barn and erecting a skyscraper in its place. It is rather like climbing a mountain, gaining new and wider views, discovering unexpected connections between our starting points and its rich environment. But the point from which we started out still exists and can be seen, although it appears smaller and forms a tiny part of our broad view gained by the mastery of the obstacles on our adventurous way up.” – Albert Einstein

Story to Nowhere

It went something like this.

Honestly, I had just shut my eyes and slept for half and hour when my mom was rushing me to get up. 8:00. Prompt. Some asshole decided to test the fire alarms at 9 in the effin morning. I mean really. There are so many college kids here. Now pissed college kids I’m sure. They told us in advance which is nice, as last time they didn’t and I was way more pissed. We went out for breakfast which makes a nice change of scenery. I need that every now and then, to keep me sane. Or to keep me from becoming more insane. Either way, it doesn’t matter whether I sit in a chair all day and watch movies and try and read or go out and live a little. I feel the same really. Maybe a little more tired, a little more sore, but at least I feel like I’m not letting this get to me. 
I like that. Feeling in control. 
I am determined to not let this get to me. I’m  determined not to be run-over by Lyme again and again. I don’t want to bend my life around the fact that some damn tick took a ‘lil nibble.
It’s nice to let myself forget that I’m sick…that I’m so dependent now on the people I love. 
I try and forget, but when my mom hands me a Dixie cup full of pills, it all comes rushing back. Rather quickly. It’s strange what the prospect of a meal of pills can do to someone. I have a aquarium patterned cup sitting in the crook of my arm and when I move, I’m reminded that I could start a pharmacy. Its a nice rattle. Like gold clanking in pockets, or the sound a diamond makes when it slides across the table, or that horrible sound of expensive glass shattering, the pills sounded expensive. It was their cost, their true ‘cost’ on me though that would make them priceless. I hear that in less flowery words. 
I have lately been hearing things in a lot less flowery words.
But it seems that this extended story of my day has only ended up in the same place that it has ended everyday. In the same ways. Me shakily picking up a fork and eating dinner voraciously, all the while thinking I’m about to toss it back up. (I have a weakness for nausea and through all this I haven’t learned to ignore it properly if you can believe it!) With me rushing through a few chapters of a book or minutes of a movie before it’s time for my IV. Then during the IV wait time, sitting gingerly in a chair, giving my left arm the cold shoulder in vain, usually watching a movie or talking. Then, and this is the worst part of all, I go to bed. Or a least I sit up, sometimes close to 8 hours, waiting for sleep to come and the hallucinations and pain to go away. I wait in vain. So I think the time away.
Or I think, then time takes it away.

1 2

%d bloggers like this: