you’d get the email about your son, either dead, or gone, or famous
extremes of an only child, spoiled by two successful parents
likely famous, as he was in childhood, yeah … fat and famous
so now, he’s still not tall and he’s still not thin but he might be
unwrinkled and have lots of kids or … Venereal Disease
he might hate me, i suspect he would
why? Why do i think he’d hate me?
When he was the one who threatened me with a sword
when he was the one who broke the Lalique vase
i suppose because breaking hearts is worse than betrothed glass
though someone, with his desire for the world
i doubt anyone had the power to break his, because words
written by 18-year-old boys on the inside of cassettes of
music for my girl, rarely mean what they say and speak
with their hermaphroditic pricks.
i was older than him in lots of ways
i would have told you Elaine, it wasn’t my intention and yes
you remember us arguing but it wasn’t all me
when he was high, he was really high and
when he was low, he was really low
a sundial beneath the earth
i stayed witnessing, smoking chain after chain
his taking of porn, watching nude and slobbering
as i clamored in my shared insanity, letting him
have his hunger sated in my emptiness.
Well … depravity is depravity and girls who hate themselves
they’re really good at running with that and boys who
like to torture cats
did you know what he did behind that red door Elaine?
did you know what he was really like or just your little boy?
i remember his father once visiting and how
estranged they seemed and he hollered at you like he’d
never stopped not for one minute
and you screamed and screamed and screamed
i remember it because i witnessed it, see i’m not the bad penny
you assumed, but he might think i am, that’s how our memory works
put her in this box, label it wrong; She’s the reason i got a Second at University
she’s why i didn’t fuck enough, she’s why i fell out with my really good friends
(who weren’t so really good, if they had those seducing intentions)
and she? Sure, she let his friends do her, like she sold her soul for lasagna
or a slice of wholesome bread with Ganja
God she was always hungry, or purging
and the drugs he gave her, sometimes with prescriptions, sometimes with sweaty palms
sometimes naked on his stomach where his scar, shone like a dalmatian on a fire truck
she half-liked his brown skin and his imperfections, the matted hair, green eyes, short squat pudgy thighs and tiny cock
they didn’t threaten her, they reminded her of a girl
she felt safe even when she felt scared, his hormone injections, wild untamed stare
he said she made him calm, especially when sucking him off to a good record
yeah I bet. Swallowing is harder for those who give head, to narcissistic boys with pretty
Though it’s been so long, she can’t be sure, of what cut what and who bled and who left the door, slightly ajar,
because that was the year she found out she was mad
and he was too, so they sort of worked
though he wasn’t her boyfriend, though he wasn’t her brother, he was a lot of things under the covers
places where they could escape themselves and that eventual horror of knowing
you haven’t got any hinges and the world’s gonna spit you out into the gutter.
Elaine, she could tell you that your son, was actually a surprisingly good lover after she got through showing him how
or she could lie and say; We just watched horror movies, sometimes he posed me
and pricked me, and played, games, with paint and swords
which was also true, because it was all true.
We gorged ourselves, only children without parents who were home
and when you were, you chain smoked too, behind your dust and your exhausted slump
we all did, drinking your wine, eating delivered organic food, such irony Elaine
you think i was just some dumb girl with thin hips and a small brain?
You used to look at me like; Who the fuck do you think you are? And I’d look right back because I wasn’t wearing my glasses and I was fucking the world with my sadness and it really didn’t matter what you thought or what anyone thought, because i’d already decided to jump
and i was watching all the time i was standing there, in my short skirt and my bare legs and my impossible tight breasts and my impossible tight cunt, all of which you hated, because your husband had left you for one
but one isn’t me, and i wasn’t her and she wasn’t it, and you weren’t alone, you were free of him, and he was the reason your son hated you, not me.
I watched through the floor boards, through holes in the ceiling, to your life unpeeling
for your short stubby hands revealing, to the kisses you gave the picture by your reading glasses, to the wine you drank and stained your hands with, before you passed them over yourself in genuflection like a good Catholic and reached for the vibrator
to your son hating you, as he may have loved you also, why we never quite knew, does anyone? Hate being so close to love, as sex is to horror and horror is to desire.
Elaine, you summoned like a Magi, some kind of anger in him, at a strong mother or women in general, he was a sexist asshole, who liked men who hated women and women who let men hate them and I was a great substitute for Robert Crumbs little busty girls who bent over and let anger take them right up the ass
but he thought anorexic actresses with dark nipples were beautiful and one time i visited his office in Greek Street Soho WI and he was talking to a Jewish actress who i also thought was hot
Rachel Weisz you still are …
and she walked away with her five-inch heels and his eyes up her skirt
i wanted to say what about me? But i was just ordinary despite being an eight to his one, and she was a handsome, famous, adored shiny girl with a full rolodex and you were a tit man
who because you were a man, (though you’d never be a real man and that made you crazy) thought you could, (fuck Rachel Weisz? Seriously?) and you never would, but it was funny imagining, especially when you already had more than you ever would
(with me, the girl of cinders and soot)
so i watched you watching her and later on when you pretended it was her you took
i pretended right back because i wouldn’t mind being her or being you
and if i were her I’d let you split me open four ways like star of anise and divide me back because it’s a soulless game and I’m your whore and i’m your mother and i’m your bloody crack.
I’m sure now you have a young wife and four chubby kids with green eyes
or you might have died, by plunging into a canal, or cutting your throat with a blunt razor
if you’d started to shave after you starred aged ten in Ms Marple as the fat cheeked boy with shorts on and a smart mouth (yeah that was about right)
but either way, i hope you will let me know Elaine, what happened to your son
because i didn’t burn his house down, he did, he struck a match and he lit us both
on fire, until we stopped being repulsive and we stood charred and broken
in Camden Town, not being able to afford to drink, at The Elephant
or fuck each other in your bed, or die standing up right then and there
because burned people are shadows, they persist
I think of him regularly, whilst I’m sure, he has long forgotten me, which isn’t fair and is ironic and really typical, because men operate on a different time and hour. They think of the girl who is bending over now and not the one who did when they first learned to use their magic wand
unless she was obedient at all times and acted the part, in which case they will brag at 45 of the one they did in St. James’s park, who hitched up her skirt and got on all fours, and she was a “right go-er that one,”
Yeah I gave it to her so many times, she couldn’t walk and yeah, yeah, yeah, builders salivating in a pub talk, I guess you had me enough you could, but you’re probably an attorney and that means you like being tied up and debased, and it’s bad taste to talk about women who left you
because you’re in control, you’re the passive one with the fat wallet and the penchant for sex in the afternoon in a diaper, or with a plastic mask over your hair, that you cut when you became serious, so you could hide the scream and the mess of your desperation.
Sometimes I check online to see, if you posted the naked pictures you took when I wasn’t even legal, in your bathroom, where your mom had lots of soap in fancy bottles
because we both have ruin in our DNA, and Elaine, if you’d asked, I might have slept with you both, your eyes were so lonely and I liked how ruined they were
the extending, unending madness of your family of animals
it comforted me, slowly dawning, I was mad also, I really didn’t know it, until
Illness is the defining point. It tells us if we have been going the wrong or right direction, it forces us to our knees, we find out the truth whether we want to or not.
I’d been blessed with good health. I didn’t even know it. I thought those who were tan and never got the flu were healthy, surely not me, I often felt a little rough. But I didn’t know what ‘rough’ could feel like, I mistook a morning allergy or sleep deprivation or a headache or stomach-ache as suffering. I had no idea.
I could write a book about this. But for now I want to write the most important salient things. Namely, what you learn, where you go and crucially, what you should AVOID.
You should avoid thinking the internet is some kind of medical reference library. The majority of information online is actually negative, it can scare you senseless. It can misdirect you, it can make you give up.
If you Google Gastroparesis you would come to find out it was an incurable, little-understood disease that would cause chronic life-long suffering for all who were diagnosed with it. You would not find out that in many ways, it is an umbrella term, just as many things before it were, that it is completely contradictory pointing to gross error in definition and that there are so many reason(s) for it and presentations, no one size fits all.
I often wonder who decides to write; Chronic incurable disease. Don’t they know what that does to people?
It’s pretty scary when you Google a disease and find so little on it, and what you do, is negative and bad-news. When you are sick you need hope more than anything else. You desperately search for it but all you find are horror stories of suffering.
That’s why I am writing this. In hope that if ONE person who has been told by their doctor they have Gastroparesis and has found the horror-story world of Google, they may see this and have their hope restored.
You may think … what’s the point of having hope if you might end up with a chronic incurable disease? Exactly for that reason. And because there are many things UN said about most diseases and many experiences NOT documented that should be. They say there are no cures for most things but so often there are ways to cure the body that go beyond what is ‘said’ and well documented.
Gastroparesis loosely means a motility disorder of the stomach (it doesn’t move right) which can cause a paralysis of functioning which are known as Gastroparesis attacks that often lead sufferers to the ER. When you experience Gastroparesis it often is 24/7 with cycles of ‘really bad’ and ‘bearable’ symptoms.
What the internet will not tell you and what the poorly trained doctors in most ER’s will not tell you and what the money-hungry Gastroenterologists will not tell you is if you get diagnosed with Gastroparesis, it doesn’t even mean you have it, and if you do have it, it doesn’t mean you will always have it. Yet if you Google Gastroparesis, most sites from the Mayo to the Cleveland Clinic will tell you it is incurable and may even lead to you having a feeding tube.
The first time I read that, I searched and searched the internet and found NO story of someone overcoming Gastroparesis. In that moment I lost hope and everything became SO much worse.
I was lucky, in that my family doctor thought to do an Epstein Barr Virus test on me, it came back VERY positive, suggestive that it was a virus that caused the symptoms of Gastroparesis. If you add ‘viral Gastroparesis’ to your search term, you may find some mention of virally-induced Gastroparesis going away in 1/2 years time.
I found out that it’s what you pair your search words with that brings up the right articles, and by searching in more detail I found tons of examples of Gastroparesis symptoms going away after a virus and the period of time needed for the body to heal from the nerve damage (much like Shingles). The average time being 1/2 years, some longer, some shorter.
Nobody told me this. Everyone told me Gastroparesis is a Chronic life-long disease that you will always have, and there aren’t even any good treatments for it and if it gets really bad you will need a feeding-tube and you may even have a pacemaker in your stomach implanted. Not once was I told there was any hope. If my family doctor hadn’t thought outside of the box due to having a similar case a couple of years ago, I may well have found the highest bridge in my city.
It got me thinking … we need to be more responsible about information and most positive. I’m all for realism, and anyone who knows me knows I’m not always glass-half-full but when you experience the negativity of the medical system and the incompetency (and the sheer cost) and you get only bad news, you quickly realize that something is very, very wrong.
If you are reading this and you have been told you have Gastroparesis or you suspect you might, bear in mind, for every negative story there are stories of cures and remission and complete resolution of symptoms. It depends upon why you got Gastroparesis and how you body copes and how you cope. There are things you can do.
First and foremost, you’re going to feel like never eating again, you may become anorexic unwillingly, because who wants to eat when they are sick all of the time? Nevertheless, keep eating, eat like your life depends upon it, don’t quit, eat through gritted teeth, eat when it makes you cry, because your body needs its strength and this will get you further away from the risk of having to be fed via a tube.
I felt a moment where I could have given in and quit eating, because truthfully I HATE food with a passion right now, but I hated the idea of a feeding tube even more, so now I eat even though I am NEVER hungry, NEVER have an appetite and hate food. I eat enough although it is very, very hard and some days I throw up what I eat and I have to wait and begin all over again. It has been a total nightmare, a complete living hell, and many times I have wept with fury that I ever have to eat again, but I remind myself of those who have NO food and I remind myself of my goal (to get well) and I eat.
Second to eating, when you have the lowest points where you may have to go to the ER to be rehydrated, because you cannot keep anything down, don’t forget that THIS WILL GET BETTER. Keep telling yourself you are strong, you are healthy, you are a warrior, this may lick you but it will not beat you. Remember during a really bad period where you are sick EVERY SINGLE MINUTE that you will recover, you will feel differently. Hold tightly onto that.
I have been BLESSED with friends who have helped me through this. My friend Mark is now my brother, he has been more than I could ever, ever have wished for and I love him dearly. It still astounds me that anyone like him could exist. He has selflessly given and given and given, even as he himself suffers. He is the perfect rare example of a truly selfless soul and has renewed my faith in humanity tenfold. I may not have had much family support but that has been made-up by the support I have had from my friends and it is true, in sickness you find out who your true friends are and often there are more than you realize.
Let me take a moment to thank anyone reading this who has been one of those people, I have thanked you personally but please know, your mercy literally has saved me from the brink.
So if you are going through this yourself and you have anyone – reach out to them. If you do not have anyone, contact me and I will help you. We must be willing and able to help those who go through these things because they cannot do it alone and should not have to. I will write more on this as I go through this – I am going to recover. I am going to get well. I will document what I learn to help others. We need to pay it forward.
Finally (for now) take the experience and grow from it. For me, I have experienced crippling anxiety with the Gastroparesis symptoms, the doctor(s) told me this is due to the nerves being damaged and how the mind-gut connection is so close, what feels like mental anxiety is actually physical anxiety and you cannot tell the difference. It feels like a huge panic attack. There’s not much that works against that, except taking some type of anti-anxiety medication in the short-term or long-term if it helps. I used to think taking pills was a last resort and yet, it’s sometimes necessary, to get through really hard times.
I have learned that if you had any anxiety beforehand (which I did) it will be exacerbated by Gastroparesis symptoms and you may also experience other issues connected to the reason you got the symptoms in the first place. In my case, Epstein Barr often causes very bad fatigue. By understanding what is going on, taking sublingual Vitamin B6 and B12, you can keep your immunity up, and keep your hope alive. After all, even if it’s a year from hell or two, it’s not your entire life.
That is what I am trying to hold onto. I may wake up heaving every day right now, but I’m hopeful that won’t be the case in a years time. I panic and worry that it will go and then return, but what I have to do as my friend told me, is take it day by day and not imagine worst-case scenarios. I can honestly say the advice and support of others is how you get through the worst of days. I may be too sick right now to work and I may be broke but I am more grateful than I have been in years, for the kindness of those who have extended their hands and said ‘let me help you’. Those words are a miracle.
My friend Mark says what helped him the most with his illness was to pay it forward, and focus not on himself but on others. I hear him and I am attempting to do the same. Currently it’s day-by-day, some weeks are unbearable still and I pray to die, whilst other days I can almost remember how I was before I got sick. What I do know is, if you get sick, with anything, don’t rely upon the internet as your go-to, and don’t isolate yourself. In my case it was my family doctor, not the fancy high-paid Gastroenterologists, who found out what had caused my sudden and violent symptoms. I have learned so much from this experience and continue to.
If you’re reading this and you feel hopeless, know that you are not alone and there is hope.