This morning I woke up up 7 wrapped desperately around my serpentine pregnancy pillow, pillowing my useless liver as my phone moaned to the heartbreak and triumph of a Jenni Rivera song set to some forgotten alarm on my phone. Yaaaa sees m'olvidoooooo tu nombre y tu appelliiiidoooooo! she wails. I've forgotten everything of you. I've forgotten your first and even your last name. Not all of us are strong or lucky like Jenni. I regularly push things away from the front of my mine. Once I failed to call to mind the name of a particularly heart-breaking ex of mine and my surprise and glee were so great I decided a celebration was in order. We drank so much tequila I'll forget the offender's name, if only due to the once in a lifetime hangover to celebrate having done the opposite. I miss forgetting things like this a little. My sickness keeps me from epic moments, good and bad. I have to reach harder to reach the messy, creative, throw your hair to the wind, creative person you thought you were before.
This morning i woke up 26. I'm not sure how i feel about it and I know that is both stupid and screams of my first world issues with my pricey therapist who I see every other week and almost definitely has a PCC membership. The sad this is I do have this therapist. She is a wonderful woman who makes me feel normal for around 120 minute a week. She's trying to convince me to accept a lot and forgive a lot more. To let go and find joy without control or planning. As I mentioned; its every other week and my jealousy of her suspected PCC shift might inevitably ruin our relationship. (Seriously- have you ever seen how KNOWLEDGEABLE their people are? Their produce man talked to me about the merits of dry roasted kale versus hemp for a full ten minutes. Thats know-how right there.) But in any case, I'm 26 now and on my way to old and much closer to dying than I ought to be and I wish I had more days. I feel like I'm not quite bright enough to keep up with whats going on in my world. I waste many of my days doing nothing at all; something that felt luxurious and romantic when I knew I had a whole damn lot of them but now it feels tinny and wasteful. It is hard for me that this is the only 100% honest piece of writing I do. Not that I'm prolific. But of the many words that spill from me: from my mouth, my fingers, my music: this insight is always honest. Honesty is inconvenient and often humbling.
I love my family for everything they do. My parents dedicate more that another job's worth of time to my care, always with a patience that is so infinite its uncalled for the number of times their aid goes without mention or without thanks. My siblings for always worrying, always with the best intentions at the bottom, and always willing to to forgive me when I lose my temper with their impossible tendency to do whatever is currently driving me crazy. My Aunt and Grandparents for visiting to hear the same stores of my same boring life but laugh and comment and applaud my little wins at any case. While my organs may be laced through and through with disease, I was blessed enough to be surrounded on the outsides, by a group of some of the most loving, generous, brave, kind people I have been lucky enough to have in my life. I love you. For those of you not listed here, you know who you are. You've been my hands, right and left; and pushed me up out of me seat, sometimes even if I didn't want it. Thank you for you calls, your cards, your visits, or even just your words or embraces at just the right moment. Together guys we will beat this. Thank you to #teamallison
Tuesday, May 26, 2015
Saturday, May 23, 2015
Stars filling the darkness
To say I woke up early this morning would be an understatement. It happened at around 4 when I was seized out of sleep by a searing aching pain in my right shoulder that snaked down to my side and curled up in my belly before stretching up to squeeze itself in just below my sternum. I wondered if it was pill time. These days I'm always wondering if it's pill time.
As I had suspected: all predictions of the second procedure being a dream compared to the first were a load of evil communist lies. Knowing what I was going in to face dipped me in fear from tip to toes as they wheeled me into the examination room. They prepped me as an anesthesiologist sent me off to some twilight world caught halfway between this world and the next, (whatever that may be). Luckily the sterile draping on my hips blocked the view of the camera making its way through my innards to one of the arterial entrances of my liver- I don't think any amount of half-way sedation could've kept me calm through viewing that little show.
Waking up from sedation is truly a combination of life's most terrifying disconcerting circumstances one could imagine. You awake in blinding confusing pain while your eyes dart about trying to gain their bearings; who is a friend, who's a threat (or really rather who do I dislike). As you make your assessment you take a deep breath and dive head first into a deep chilly resentment of your situation. The "why me, oh god why me, oh how i hate this" begins on repeat, sinks its rusty claws under you ribs and wiggles its talons, tapping them to the beat of its constant refrain. The coughs when they come are rattly and bounce around inside my right shoulder like they're looking for somewhere to roost; angry, molting birds.
The days that follow go oddly well with bursts of awful. As more days pass, the good moments dwindle and the awful inches its way into more and more of your activities until you find its mostly all awful. I sit to write, to let out the feelings, try and help the world understand. As the laptop sits warm on my lap and my fingers rub at the keys it seems impossible to explain it all. All anyone wants to know is how it feels, what I need, what will make me feel better. But as I sit to try and give the world what they want, my neck sinks down deep into my shoulders and my head inches back, eyes drooping. And then I think how ludicrous it is that I can't sleep at night, that I stare at my ceiling and wonder where Morpheus has gone with his soft sleepy sand. But as my head drops back, sleep comes creeping up behind and I'm gone before I can answer these questions that hang over my head. Answers I owe to the ones I love.
I look for activities; landmarks of movement, of achievement to show myself I'm still whole somehow, to keep the pall of fading away to nothing away off from around my neck. It itches like a silly fear you're afraid to admit to. The days I can make a batch of cookies or have coffee with a friend I am elated: I'm not dead or dying or so afraid all the time. Seems a ridiculous level of gravity to lay upon a batch of chocolate chips or a double ristretto vanilla latte. But I have known days when neither were imaginable; I am grateful for small achievements, for the little reminders. June is creeping closer and more than anything I want to be healed well enough to go to Italy. I hear the Tuscan breeze and the smells of field ripe tomatoes. I will eat my way through that country, god willing, even if it kills me. My eyes will see the fields roll on green and gold, I will stand on streets older than upon my feet have tread before. When those molting cawing birds roost in my chest and preen their black pinfeathers I dream of Italy and how an Italian moon must be more beautiful than that opal orb that looks down on me from my green Kent valley. I close my eyes and let my mind fly free of their roost. I let my head fall back, let my regrets go, and dream of Italian stars.
As I had suspected: all predictions of the second procedure being a dream compared to the first were a load of evil communist lies. Knowing what I was going in to face dipped me in fear from tip to toes as they wheeled me into the examination room. They prepped me as an anesthesiologist sent me off to some twilight world caught halfway between this world and the next, (whatever that may be). Luckily the sterile draping on my hips blocked the view of the camera making its way through my innards to one of the arterial entrances of my liver- I don't think any amount of half-way sedation could've kept me calm through viewing that little show.
Waking up from sedation is truly a combination of life's most terrifying disconcerting circumstances one could imagine. You awake in blinding confusing pain while your eyes dart about trying to gain their bearings; who is a friend, who's a threat (or really rather who do I dislike). As you make your assessment you take a deep breath and dive head first into a deep chilly resentment of your situation. The "why me, oh god why me, oh how i hate this" begins on repeat, sinks its rusty claws under you ribs and wiggles its talons, tapping them to the beat of its constant refrain. The coughs when they come are rattly and bounce around inside my right shoulder like they're looking for somewhere to roost; angry, molting birds.
The days that follow go oddly well with bursts of awful. As more days pass, the good moments dwindle and the awful inches its way into more and more of your activities until you find its mostly all awful. I sit to write, to let out the feelings, try and help the world understand. As the laptop sits warm on my lap and my fingers rub at the keys it seems impossible to explain it all. All anyone wants to know is how it feels, what I need, what will make me feel better. But as I sit to try and give the world what they want, my neck sinks down deep into my shoulders and my head inches back, eyes drooping. And then I think how ludicrous it is that I can't sleep at night, that I stare at my ceiling and wonder where Morpheus has gone with his soft sleepy sand. But as my head drops back, sleep comes creeping up behind and I'm gone before I can answer these questions that hang over my head. Answers I owe to the ones I love.
I look for activities; landmarks of movement, of achievement to show myself I'm still whole somehow, to keep the pall of fading away to nothing away off from around my neck. It itches like a silly fear you're afraid to admit to. The days I can make a batch of cookies or have coffee with a friend I am elated: I'm not dead or dying or so afraid all the time. Seems a ridiculous level of gravity to lay upon a batch of chocolate chips or a double ristretto vanilla latte. But I have known days when neither were imaginable; I am grateful for small achievements, for the little reminders. June is creeping closer and more than anything I want to be healed well enough to go to Italy. I hear the Tuscan breeze and the smells of field ripe tomatoes. I will eat my way through that country, god willing, even if it kills me. My eyes will see the fields roll on green and gold, I will stand on streets older than upon my feet have tread before. When those molting cawing birds roost in my chest and preen their black pinfeathers I dream of Italy and how an Italian moon must be more beautiful than that opal orb that looks down on me from my green Kent valley. I close my eyes and let my mind fly free of their roost. I let my head fall back, let my regrets go, and dream of Italian stars.
Tuesday, May 12, 2015
Guess who's coming for dinner?
There are a million things i still want to do. I want to close on a home of my very own; something gray or maybe blue with a little porch and an open kitchen. I want to find love again, feel the joy of revolving your world around the axis of another person who sees you as their moon and stars. I want to write a million poems, until the words spill out like flowers and gemstones, frogs and slimy toads like the maidens from the fairy tale, blessed and cursed for their kindness or cruelty by the beautiful fairy, disguised as the old woman at the fountain. I want to travel the world and feel the fabrics of a thousand cultures against my skin. I want to see the colors and smell a different way of living. I want to discover new fruits and vegetables and spices, new ways of cooking food and sharing experiences.
But more than this I want to bring this warmth back to my family's table. Growing up, the family dinner table was a sacred space: no one missed dinner and there were no phone call interruptions (or later cell phones) rude behavior, or fighting. It was a place for the celebration of perfect test scores and promotions at work. It was the judgment bench from which there was no hiding. The day's bad behaviors were measured and weighed, punishments and admonishments doled out as necessary. No matter the day you had had a work or school, once your rear end hit the seat at the table you could be assured of two things: 1) that you would perform your due diligence in consuming whatever was put in front of you, and 2) there would be no escaping a detailed explanation, interrogation, and sometimes even confession as deemed necessary by the law of the land.
As we all grew older, this tradition became harder to upkeep. As we graduated and left the house we left our empty chairs behind; their cream pads muted reminders of our absences that nicely complimented the green and mint trim in the kitchen. Dinners were taken less frequently together and now my little brother eats things like plain lunch meat that he likes to cut shapes out of. None of which is normal. I want to make dinner with everyone around the table. I want to roast a chicken perhaps, sauté some faro or roost some vegetables. I want to make batches of cookies and airy cakes as tall as dreams and watch their eyes light up when they try the first bite. I want to be remembered for all the extra love in those sweets.
But these days I get one shot a day to do something worthwhile. One shot to grocery shop, or handle a hold phone tree with verizon. I always push for two activities, sometimes I get really crazy and go for 3 but it is difficult trying to fit so much into my days. I have the same number of hours as everyone else (24 in case you were wondering) but my ability to to anything with them is rather limited down to somewhere around about 4 hours of active time. Just like a happily developing toddler. Of course again, like any good preschooler, I need to separate my activities with prodigious napping, or I tend to become very grumpy and lose my focus and patience at a rather alarming rate.
My natural impulse of reaching for the pantry during these testing times, whether it be the mounds bar or the tortilla chips, has led to a lifetime subscription to a generally unhealthy relationship with food. I eat emotionally or sometimes not at all; driven by the twisted logic that excessive eating will fill whatever sadness or anger void I am working to shovel through. I avoid eating all together under high stress situations, I struggle with my body image and being able to control what goes into my body and when, is an important (if entirely unhealthy) control mechanism.
Now, in these times, it is even more important that I grow past these issues to purse a healthier more sustainable lifestyle. Some changes are easy to make: I detest most fast food and almost never eat it, so taking it off the list is an easy one. I am working on dialing down the dairy and non-organic gluten products. I am also trying to up my vegetable consumption. While I adore fruits in all shapes, sizes, colors, and most flavors (here's looking at you papaya), I have to be clever about hiding my green things in unobtrusive places, like smoothies, to ensure I get my full servings. If I were truly dedicated, I would force some raw veggies into my diet: culprits like broccoli, carrots, peppers, tomatoes, and kale pack huge vitamin punches in their raw forms with the added bonus of being chalk full of cancer-fighting antioxidants.
It is these small battles that I fight during these long days where nothing ever seems to get better. When I win, they are poor little victories, faintly deserving of a golf clap. When I lose it means my bad choices make for even longer nights curled up around my malfunctioning liver as my insides try to work through a few too many ounces of brie or something equally irresponsible. Needless to say, not deserving of the golf clap. Today has been a special third kind of day which is neither a success nor failure but merely a struggle to get through till the sun goes down. It feels as if it ought to be about midnight and meanwhile the grey watery sunshine is still bearing down bleakly through the french doors; "the day isn't over" it whispers "it's never going to be over". So instead I write. I feel like this disease has taken a huge part of who I am, carved it out like an ice cream scoop and dropped it on the hot pavement to melt and run off in a sticky mess, sure to ruin someone's shoes another day. The fatigue has taken my sense of humor and quick wit, these days I mostly feel blunt and irritable- no time for jokes, no room for funny observations. My brain, once the cerebral equivalent to a fantastic spanish colonial style hacienda, chalk full of inlaid tile and guest bedrooms, is now filled with cobwebs and the pieces of broken furniture. The extra rooms, once vacant and left beautifully decorated, white linen shades blowing in the open wind, are full of cobwebs and the strange monstrous children of drug fueled dreams. They whisper warnings and words of encouragement to me as I wander the hallways but I don't have the heart to stop and look, try and understand their twisted words as they warn of the trials still to come. These children of my feverish dreams rub up and down my ribs with their pale fingers in the night, waking me up with icy cold needles up my side. You cannot close the door on these apparitions. They refuse to be ignored and their howling in the night should you try, sends them into a towering fury; before you know it they've broken into your room and hang from your elbows, crying and sucking what little life force you have left within you. When I am afraid that the shadows will never stop their howling and the sun will never again rise, I sing to myself from time to time. It doesn't stop the pain but the sound of my voice takes away the fear, gives me a moment of stillness, almost peace, allowing me to catch my breath.
Once I've caught my breath I can remember the way things used to be; the calm bountiful yard at home, bursting full of flowers, my runs in the sunshine feeling stronger each day, the endless gorgeous horizons of different opportunities just waiting to be played out into an extraordinary life. I desperately want all of that back. There is no one who will promise me any kind of return to normalcy. My bread and butter is "maybe", "no way to tell" and (my favorite) "with any luck", answers that give me absolutely no piece of mind or comfort but also make it very difficult for me to sue anyone (which I've come to believe is the primary goal of all medical institutions in this day and age). The only comfort (and it is a meagre one) is that they do generally apply sympathy pain pills following their failure to deliver useful information. After haven taken so many of them, the pain pills don't do too much to scratch the surface but at least they tamp down my natural awareness enough that their failure to treat me like a functioning adult is slightly less galling.
It is finally 8:00PM. This is exciting to me because it means its only an hour away from 9. 9PM is a decently acceptable hour at which to go to bed. Anything earlier makes me feel dangerously close to a senior citizen and gives me inexplicable urges to make under informed complaints about medicare, illegal immigration, and fox news anchors. 9 o'clock however means that I could be a highly contributing member of society (i'm not) that needs excessive sleep to keep her massive brain going. This is a nice though and I try to run with it as these days nice thoughts just don't roll through on the daily express like they used to. But in spite of cubes in my mind wrapped up in pain and self-doubt and hate, a sort of life or death tetris race to the top, I try to keep my chin up. I have the best support team any fighter could ask for, my parents and best friends keep me smiling, elicit a laugh or two, force-feed me my favorite foods, and keep me alive by threatening to kill me should I die. They love me unconditionally and aren't afraid by the handfuls of hair falling off my head or the horrible shrieking fits i have from time to time, terrified and angry with life and with death. Someday, when this is all through, I will have them with me still and find a way to repay the kind of divine goodness that saves a person's life. Someday, when all this has passed I'll be looking out or i'll be looking down with a serene smile, at peace at last, forever grateful, and forever in love with those who held me up when I had reached the end of my strength. I love you all. Alla famiglia!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
PS: thank you from the bottom of my heart from myself and my entire family to all of those who gave generously to our gofundme campaign. Just today we reached our fundraising goal which will make it possible to fund some of my current treatment and certainly much of the continuing systemic chemotherapy moving forward as we investigate participating in clinical trials and newer treatments that are in many cases covered only partially or not at all by health insurance. Your contributions will make a life-saving difference and I cannot thank you enough for the generosity and sincere good wishes and support from all those who have followed the blog or reached out through this difficult process. We love you and thank you! Further info on the fundraising campaign can be found here: http://www.gofundme.com/teamallison
much love,
Allison
But more than this I want to bring this warmth back to my family's table. Growing up, the family dinner table was a sacred space: no one missed dinner and there were no phone call interruptions (or later cell phones) rude behavior, or fighting. It was a place for the celebration of perfect test scores and promotions at work. It was the judgment bench from which there was no hiding. The day's bad behaviors were measured and weighed, punishments and admonishments doled out as necessary. No matter the day you had had a work or school, once your rear end hit the seat at the table you could be assured of two things: 1) that you would perform your due diligence in consuming whatever was put in front of you, and 2) there would be no escaping a detailed explanation, interrogation, and sometimes even confession as deemed necessary by the law of the land.
As we all grew older, this tradition became harder to upkeep. As we graduated and left the house we left our empty chairs behind; their cream pads muted reminders of our absences that nicely complimented the green and mint trim in the kitchen. Dinners were taken less frequently together and now my little brother eats things like plain lunch meat that he likes to cut shapes out of. None of which is normal. I want to make dinner with everyone around the table. I want to roast a chicken perhaps, sauté some faro or roost some vegetables. I want to make batches of cookies and airy cakes as tall as dreams and watch their eyes light up when they try the first bite. I want to be remembered for all the extra love in those sweets.
But these days I get one shot a day to do something worthwhile. One shot to grocery shop, or handle a hold phone tree with verizon. I always push for two activities, sometimes I get really crazy and go for 3 but it is difficult trying to fit so much into my days. I have the same number of hours as everyone else (24 in case you were wondering) but my ability to to anything with them is rather limited down to somewhere around about 4 hours of active time. Just like a happily developing toddler. Of course again, like any good preschooler, I need to separate my activities with prodigious napping, or I tend to become very grumpy and lose my focus and patience at a rather alarming rate.
My natural impulse of reaching for the pantry during these testing times, whether it be the mounds bar or the tortilla chips, has led to a lifetime subscription to a generally unhealthy relationship with food. I eat emotionally or sometimes not at all; driven by the twisted logic that excessive eating will fill whatever sadness or anger void I am working to shovel through. I avoid eating all together under high stress situations, I struggle with my body image and being able to control what goes into my body and when, is an important (if entirely unhealthy) control mechanism.
Now, in these times, it is even more important that I grow past these issues to purse a healthier more sustainable lifestyle. Some changes are easy to make: I detest most fast food and almost never eat it, so taking it off the list is an easy one. I am working on dialing down the dairy and non-organic gluten products. I am also trying to up my vegetable consumption. While I adore fruits in all shapes, sizes, colors, and most flavors (here's looking at you papaya), I have to be clever about hiding my green things in unobtrusive places, like smoothies, to ensure I get my full servings. If I were truly dedicated, I would force some raw veggies into my diet: culprits like broccoli, carrots, peppers, tomatoes, and kale pack huge vitamin punches in their raw forms with the added bonus of being chalk full of cancer-fighting antioxidants.
It is these small battles that I fight during these long days where nothing ever seems to get better. When I win, they are poor little victories, faintly deserving of a golf clap. When I lose it means my bad choices make for even longer nights curled up around my malfunctioning liver as my insides try to work through a few too many ounces of brie or something equally irresponsible. Needless to say, not deserving of the golf clap. Today has been a special third kind of day which is neither a success nor failure but merely a struggle to get through till the sun goes down. It feels as if it ought to be about midnight and meanwhile the grey watery sunshine is still bearing down bleakly through the french doors; "the day isn't over" it whispers "it's never going to be over". So instead I write. I feel like this disease has taken a huge part of who I am, carved it out like an ice cream scoop and dropped it on the hot pavement to melt and run off in a sticky mess, sure to ruin someone's shoes another day. The fatigue has taken my sense of humor and quick wit, these days I mostly feel blunt and irritable- no time for jokes, no room for funny observations. My brain, once the cerebral equivalent to a fantastic spanish colonial style hacienda, chalk full of inlaid tile and guest bedrooms, is now filled with cobwebs and the pieces of broken furniture. The extra rooms, once vacant and left beautifully decorated, white linen shades blowing in the open wind, are full of cobwebs and the strange monstrous children of drug fueled dreams. They whisper warnings and words of encouragement to me as I wander the hallways but I don't have the heart to stop and look, try and understand their twisted words as they warn of the trials still to come. These children of my feverish dreams rub up and down my ribs with their pale fingers in the night, waking me up with icy cold needles up my side. You cannot close the door on these apparitions. They refuse to be ignored and their howling in the night should you try, sends them into a towering fury; before you know it they've broken into your room and hang from your elbows, crying and sucking what little life force you have left within you. When I am afraid that the shadows will never stop their howling and the sun will never again rise, I sing to myself from time to time. It doesn't stop the pain but the sound of my voice takes away the fear, gives me a moment of stillness, almost peace, allowing me to catch my breath.
Once I've caught my breath I can remember the way things used to be; the calm bountiful yard at home, bursting full of flowers, my runs in the sunshine feeling stronger each day, the endless gorgeous horizons of different opportunities just waiting to be played out into an extraordinary life. I desperately want all of that back. There is no one who will promise me any kind of return to normalcy. My bread and butter is "maybe", "no way to tell" and (my favorite) "with any luck", answers that give me absolutely no piece of mind or comfort but also make it very difficult for me to sue anyone (which I've come to believe is the primary goal of all medical institutions in this day and age). The only comfort (and it is a meagre one) is that they do generally apply sympathy pain pills following their failure to deliver useful information. After haven taken so many of them, the pain pills don't do too much to scratch the surface but at least they tamp down my natural awareness enough that their failure to treat me like a functioning adult is slightly less galling.
It is finally 8:00PM. This is exciting to me because it means its only an hour away from 9. 9PM is a decently acceptable hour at which to go to bed. Anything earlier makes me feel dangerously close to a senior citizen and gives me inexplicable urges to make under informed complaints about medicare, illegal immigration, and fox news anchors. 9 o'clock however means that I could be a highly contributing member of society (i'm not) that needs excessive sleep to keep her massive brain going. This is a nice though and I try to run with it as these days nice thoughts just don't roll through on the daily express like they used to. But in spite of cubes in my mind wrapped up in pain and self-doubt and hate, a sort of life or death tetris race to the top, I try to keep my chin up. I have the best support team any fighter could ask for, my parents and best friends keep me smiling, elicit a laugh or two, force-feed me my favorite foods, and keep me alive by threatening to kill me should I die. They love me unconditionally and aren't afraid by the handfuls of hair falling off my head or the horrible shrieking fits i have from time to time, terrified and angry with life and with death. Someday, when this is all through, I will have them with me still and find a way to repay the kind of divine goodness that saves a person's life. Someday, when all this has passed I'll be looking out or i'll be looking down with a serene smile, at peace at last, forever grateful, and forever in love with those who held me up when I had reached the end of my strength. I love you all. Alla famiglia!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
PS: thank you from the bottom of my heart from myself and my entire family to all of those who gave generously to our gofundme campaign. Just today we reached our fundraising goal which will make it possible to fund some of my current treatment and certainly much of the continuing systemic chemotherapy moving forward as we investigate participating in clinical trials and newer treatments that are in many cases covered only partially or not at all by health insurance. Your contributions will make a life-saving difference and I cannot thank you enough for the generosity and sincere good wishes and support from all those who have followed the blog or reached out through this difficult process. We love you and thank you! Further info on the fundraising campaign can be found here: http://www.gofundme.com/teamallison
much love,
Allison
Wednesday, May 6, 2015
The porch swing: a sad song in grey minor
As the weather has begun to turn towards the better for the springtime, my dad has taken the time to hang the porch swing at the end of our wraparound front porch. I love to sit in this swing and rock. The house blocks the majority of any chill wind and the heavy chains and worn oak boards generate their own sort of slow momentum: the thing never comes to a full stop. I could sit in the swing for hours, my hands folded in my lap as I stare out towards the road. From the swing I can see the mailbox and the driveway. I can see the left third of the front yard with the cherry and apple trees. I can see the side yards to the left on the other side of the porch rails with the flower beds and the rows of white lights that run above between the eaves of the roof and the peak of the garage roof across the way that sits beneath my mothers piano studio, a separate two story building.
Much of my life passed me by in those few thousand square feet that I purvey from the porch swing.
I learned to parallell park in-between the same black trash cans at the intersection with the road and rode by bike in endless loops around our two sided driveway. I shot my senior pictures on that wrap around porch. I was barefoot and baby faced with braces and an unfortunate hunch in my shoulders but the deck was freshly painted and shone white and proper against the blaze of the blooming dogwood tree and immaculate green boxwoods.
I sit and I swing and look at the peonies full of fresh buds and admire the first bush with its premature blooms, wilting and dying a premature death. In their haste to bloom they caught yesterday's untimely hail and their fragile bright pink lion's manes are melting like sugar down the dark green stems. Peonies are my favorite flowers and I await their arrival each year with great anticipation. Last year I missed the peonies as they began to bloom just as I was recovering from the worst of my eye surgery, my world was a dark one, far from the sunshine to keep alive the fragile blooms of a flower.
This has the strange effect of recalling older memories when I see the peonies this year, as if I missed them last year, indeed the entire springtime, due to an unplanned trip though a cancerous wormhole. I see the peonies and and am hit with a half hysterical half practical regret that they bloom so early. If only they bloomed in june to july instead of May! If the flowers bloomed through early July I could just stretch the end of the season to put peonies on the wedding tables instead of roses. I remember having thought this though a million times through the spring of 2013. The golden lights that stretch across the roofs from point to point are from the wedding as well. As i swing on the porch swing I can see the long tulle netting floating in the breeze between the lights. The hanging silver stars and the dance floor below. I can see the ghost of the white tents fluttering above the tables with their white linen and silver platters of food. I can smell the flowers and the champagne in the air, still hear the laughter and see the smiles.
I thought it would be impossible to live at home and see winter turn to spring, thought it would break my heart to see spring turn to summer. Our relationship was a volatile one. We slipped early on into a love that was equal parts magnificent and doomed. We were entirely in love and fought epic battles holding us apart economic, cultural, and social lines with the passion of a pair of don quixotes blind to the fruitlessness of our labors. We worked our days and our nights too with dreams in our eyes. We chased our pleasures down roads with dim lights and bright smiles; strong drinks and stronger words as the nights got darker. As our world spun faster each moment of turbulence sent us a bit further off course. Late Summer, a hot day that burned sullenly off to sticky evening heat. One night, one last drink, one last word, a voice yelled "i can't do this anymore" and his hand hit me full across the face.
I left him immediately and autumn became winter as I tried to reconcile who I was, who I believed myself to be, and the vows that I had made to another person in front of all of the souls I most loved and respected. I had decided to pursue my commitment till death did us part in conjunction with marital counseling to help answer the questions that had burned through the beautiful life I believed i had created for myself. It was months later when winter became spring that I learned of my first diagnosis and the problems of the past seemed to melt away. As my mind spun with the idea of losing my eye he stood behind me and held me up as my legs faltered beneath me. When I flew to philadelphia to have the tumor operated on he snuck my favorite chocolates into my luggage with a love note. He never bought gifts and he never wrote love letters. When I returned, having learned of the existence of an entirely new and terrible world of pain and suffering he cared for me, nursed me, held my hand and shook his head with me as I wondered when the pain would ever end, if I would ever recover.
I forgave him. We could have moved on and lived on together. But I recovered. Spring became summer and the operation was a success. My underwhelming oncologist declared me officially in remission at 6 months and my opthamologists marveled at the success of the surgery and slow but steady deterioration of the tumor in my eye. My test results were clear in my major systems and my PET scan was clear. It appeared I had beat cancer. I returned to work and our lives returned to normal. All normal. The fighting began again. The resentments and arguments. Summer became autumn and the things he said when we fought became crueler, more unforgivable. He told me he had never loved me, had pretended through my sickness. I mourned a relationship I knew was dying. As autumn became winter the final flame red leaves blew from their branches and fell to the frozen ground. When he hit me the second time it was with relief that I left him for good.
I returned to my family's home having loved and lost; a hundred years older in less than 730 days. I thought it would be impossible to see those grounds blossom into spring again. I couldn't imagine the ache in my soul to see those flowers explode into summer again; to see the roses and hydrangeas flaunt their extravagant colors against the verdant decadent green of everything.
But now spring has sprung again and the peonies are blooming. The dragons I had imagined facing do not raze my fields with hot tongues of memory but rather set my world ablaze with pain and organ failure. Having experienced both, I can admit that heartbreak is infinitely preferable to chemotherapy. You see heartbreak may make you wish you had never been born but chemotherapy will accomplish the same thing and has the nasty added bonus of no guarantee that it will matter afterwards whether you were born in the first place. At the very least it has little to nothing to do with the outcome anyway.
So this year I look at the peonies bloom and think of how lovely they would've been on the wedding tables . And this does not bring me pain. I hear the ghost of a Frank Sinatra song on the breeze with the laughter of family and friends in the sun under those strings of golden lights. I remember how beautiful I was and how happy. I hope that this treatment is successful and i see the spring become summer. I am not afraid of those beautiful summer evenings anymore and I want to see those beautiful summer flowers. I am hoping for an autumn too. I want to come through all of this a million years wiser and impossible older and braver. I want to learn to look life in the eye without blinking and hold out my arms as it changes without flinching and missing something. When the leaves change this year I don't want to be afraid anymore.
*********************************************************************************
Thank you again to everyone who has taken the opportunity to donate to our gofundme campaign which can be found here http://www.gofundme.com/teamallison
Every little bit helps us in this ongoing fight and we cannot thank you all enough for your outpouring of support prayers and goodwill. Thank you from all of #teamallison
Much of my life passed me by in those few thousand square feet that I purvey from the porch swing.
I learned to parallell park in-between the same black trash cans at the intersection with the road and rode by bike in endless loops around our two sided driveway. I shot my senior pictures on that wrap around porch. I was barefoot and baby faced with braces and an unfortunate hunch in my shoulders but the deck was freshly painted and shone white and proper against the blaze of the blooming dogwood tree and immaculate green boxwoods.
I sit and I swing and look at the peonies full of fresh buds and admire the first bush with its premature blooms, wilting and dying a premature death. In their haste to bloom they caught yesterday's untimely hail and their fragile bright pink lion's manes are melting like sugar down the dark green stems. Peonies are my favorite flowers and I await their arrival each year with great anticipation. Last year I missed the peonies as they began to bloom just as I was recovering from the worst of my eye surgery, my world was a dark one, far from the sunshine to keep alive the fragile blooms of a flower.
This has the strange effect of recalling older memories when I see the peonies this year, as if I missed them last year, indeed the entire springtime, due to an unplanned trip though a cancerous wormhole. I see the peonies and and am hit with a half hysterical half practical regret that they bloom so early. If only they bloomed in june to july instead of May! If the flowers bloomed through early July I could just stretch the end of the season to put peonies on the wedding tables instead of roses. I remember having thought this though a million times through the spring of 2013. The golden lights that stretch across the roofs from point to point are from the wedding as well. As i swing on the porch swing I can see the long tulle netting floating in the breeze between the lights. The hanging silver stars and the dance floor below. I can see the ghost of the white tents fluttering above the tables with their white linen and silver platters of food. I can smell the flowers and the champagne in the air, still hear the laughter and see the smiles.
I thought it would be impossible to live at home and see winter turn to spring, thought it would break my heart to see spring turn to summer. Our relationship was a volatile one. We slipped early on into a love that was equal parts magnificent and doomed. We were entirely in love and fought epic battles holding us apart economic, cultural, and social lines with the passion of a pair of don quixotes blind to the fruitlessness of our labors. We worked our days and our nights too with dreams in our eyes. We chased our pleasures down roads with dim lights and bright smiles; strong drinks and stronger words as the nights got darker. As our world spun faster each moment of turbulence sent us a bit further off course. Late Summer, a hot day that burned sullenly off to sticky evening heat. One night, one last drink, one last word, a voice yelled "i can't do this anymore" and his hand hit me full across the face.
I left him immediately and autumn became winter as I tried to reconcile who I was, who I believed myself to be, and the vows that I had made to another person in front of all of the souls I most loved and respected. I had decided to pursue my commitment till death did us part in conjunction with marital counseling to help answer the questions that had burned through the beautiful life I believed i had created for myself. It was months later when winter became spring that I learned of my first diagnosis and the problems of the past seemed to melt away. As my mind spun with the idea of losing my eye he stood behind me and held me up as my legs faltered beneath me. When I flew to philadelphia to have the tumor operated on he snuck my favorite chocolates into my luggage with a love note. He never bought gifts and he never wrote love letters. When I returned, having learned of the existence of an entirely new and terrible world of pain and suffering he cared for me, nursed me, held my hand and shook his head with me as I wondered when the pain would ever end, if I would ever recover.
I forgave him. We could have moved on and lived on together. But I recovered. Spring became summer and the operation was a success. My underwhelming oncologist declared me officially in remission at 6 months and my opthamologists marveled at the success of the surgery and slow but steady deterioration of the tumor in my eye. My test results were clear in my major systems and my PET scan was clear. It appeared I had beat cancer. I returned to work and our lives returned to normal. All normal. The fighting began again. The resentments and arguments. Summer became autumn and the things he said when we fought became crueler, more unforgivable. He told me he had never loved me, had pretended through my sickness. I mourned a relationship I knew was dying. As autumn became winter the final flame red leaves blew from their branches and fell to the frozen ground. When he hit me the second time it was with relief that I left him for good.
I returned to my family's home having loved and lost; a hundred years older in less than 730 days. I thought it would be impossible to see those grounds blossom into spring again. I couldn't imagine the ache in my soul to see those flowers explode into summer again; to see the roses and hydrangeas flaunt their extravagant colors against the verdant decadent green of everything.
But now spring has sprung again and the peonies are blooming. The dragons I had imagined facing do not raze my fields with hot tongues of memory but rather set my world ablaze with pain and organ failure. Having experienced both, I can admit that heartbreak is infinitely preferable to chemotherapy. You see heartbreak may make you wish you had never been born but chemotherapy will accomplish the same thing and has the nasty added bonus of no guarantee that it will matter afterwards whether you were born in the first place. At the very least it has little to nothing to do with the outcome anyway.
So this year I look at the peonies bloom and think of how lovely they would've been on the wedding tables . And this does not bring me pain. I hear the ghost of a Frank Sinatra song on the breeze with the laughter of family and friends in the sun under those strings of golden lights. I remember how beautiful I was and how happy. I hope that this treatment is successful and i see the spring become summer. I am not afraid of those beautiful summer evenings anymore and I want to see those beautiful summer flowers. I am hoping for an autumn too. I want to come through all of this a million years wiser and impossible older and braver. I want to learn to look life in the eye without blinking and hold out my arms as it changes without flinching and missing something. When the leaves change this year I don't want to be afraid anymore.
*********************************************************************************
Thank you again to everyone who has taken the opportunity to donate to our gofundme campaign which can be found here http://www.gofundme.com/teamallison
Every little bit helps us in this ongoing fight and we cannot thank you all enough for your outpouring of support prayers and goodwill. Thank you from all of #teamallison
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