The C-Word: How to Say No

I am always asked this question.

When faced with the enormous weight of the medical establishment and the cancer industry, along with the battalions of family members and friends who told me I was a selfish, unrealistic, irresponsible mother with a death wish, how did I say no?

How do you make a decision based on the quiet voice of your intuition when you're scared out of your skin? And when almost every person of repute is telling you that your intuition might be deadly wrong.

How do you do what you feel in your gut is right for you and your body?

This is critical.

Toddlers say, "No" often and with conviction. "No green beans!" "No shoes!" It's simple.

Teenagers do it by rolling over and going back to sleep. Or ignoring their parents' text messages. It's all about creating a separate identity and learning to make your own boundaries. It's a crucial developmental step.

Eventually, though, as we grow up, we all learn the value of saying, "Yes." Or at least, "Oh, all right," most of the time. It's a necessary part of living in society. We get to work when we are told to be there, we do the laundry for the whole family, make dinner when we're exhausted.

The problem is that we - especially women - often forget that we need to assert our independence sometimes. Not just for the brief rush of power (and ensuing guilt) of doing what we want, but as a sort of self-protection. There is only so much you can do and if you don't learn to protect yourself, the world will eat you up.

I am not suggesting that the world is malicious, just that the people who love you most, who care most about you, sometimes don't realize that you are a human yourself who also has a responsibility to herself. That sometimes you need to tell them, "No."

When you are sick, this can get even harder.

If you feel like your illness might respond better to a certain diet, let's say your own version of Unger's Clean or Gerson therapy or any of the variations and options out there, you need to protect yourself from the people who love you and may have stayed up all night baking your favorite brownies or frying samosas. If you are weak and tired and you don't even really like brussel sprouts, but you somehow know that's what you need, you need to say, "No, thank you," to the person who brought cupcakes and the doctor who says, "What you eat doesn't really matter anyway."

For the hospital, here is your first bit of ammunition. In the land of the invalids, the squeaky wheel gets gets the oil. Statistically, patients who complain and demand attention get better care - and recover faster. The more active you are in the process, the better your care will be - mainly because you've lived in your body and you know it better than any doctor ever could. I'm not suggesting you be nasty and mean to anyone - and especially not the nurses because they really work hard - but that you stick to what you believe.  Even doctors and nurses, when they stop to think, believe this.

The uncomplaining patient who quietly does what she's told tends to be forgotten in the rush. If you have unpleasant symptoms or side-effects and you don't demand that your doctor address them in some way, you run the risk of hurting yourself in the long run. The human body reacts differently to different drugs as well as different illnesses. It's possible that something that seems unimportant may turn out to be something serious.

That's why I suggest you listen to yourself and your body. Trust your intuition.

When you are sick, vulnerable, frightened or even just intimidated, that is the time to say, "No," and take your power back. No, I don't want cortisteroids. No, I don't want a medical student to give me spinal tap, I'd rather have someone with years of experience. No, I can't walk there, I want a wheelchair. No, I don't want a wheelchair, I'd rather walk myself.

Even if every single person tells you that acupuncture or prayer or avoiding surgery or chemotherapy or radiation is a stupid thing to do, if you feel like something is not working for you, if you get a sinking feeling as you start do it, say, "No." (Interestingly, my daughters never question my convictions).

Remember that you can. There is a patient's bill of rights that allows you to refuse any treatment that you don't feel is benefitting you. It means that your doctors need to explain what they are doing and why. Just because something has "always been done that way" or because something is the "standard protocol" doesn't mean it always works or it can't be improved upon.

In my case, I knew too many people who had suffered from the side-effects of chemotherapy and radiation. The cancer was defeated, but with many of my friends, it came roaring back in four or five years because the person's natural immune system was so decimated by the chemo. I've known people who were killed by the side effects of chemotherapy and radiation but I never met anyone who was killed by natural medicine.

While I am a big proponent of natural healing methods, there is a lot to be said for your own state of mind. If you really have faith in whatever method you are using to get well, it is likely to work. If you have your doubts, don't do it.

For me, I tried psychic healers, massage and cranial-sacro therapists, acupuncturists, integrative oncologists, reiki healers, brennan method healers, nutritionists, and hypnotists. I chose them based on positive recommendations from others. If something felt good - and I found research supporting it - I kept doing it. If it didn't feel like it was doing me good or I didn't respond to the energy of the person, I stopped. I really worked on not being intimidated by either the New Age machinery or the medical industry.

Cancer and other life-threatening ailments are big business and too many people are scared or intimidated into spending a lot of money on treatments that don't work for them. Say, "No."

Not to be too trite but in Legally Blonde Two, Elle Woods uses a disappointing haircolor as a metaphor:

Sometimes you realize that part of the reason you got sick was that you didn't learn how to say, "No" enough. No, I can't drive you there. No, I can't keep the kids this weekend so you and your girlfriend can go to a bed and breakfast. No, I can't cover that bill. No, you can't come have your lunch at my house just because you're in the neighborhood. 

Years ago, my mother taught me the beginnings of saying no to authorities. "Well, the recipe calls for three cans of chicken broth, but I made some chicken stock myself so I will use that." Or "The doctor told me to take this, but it's making me feel sick, so I'm going to throw them away and call him."

Start small. But work on it. 

It's not always nice to say no to the people who care about you. But it's better to be nice to yourself some time.

When I finally told my oncologist I would not do any more chemotherapy despite her recommendations, she said, "You'll be dead in 12 weeks."

When I told the psychiatrists who were sent to counsel me that there were other ways to cure cancer, they laughed and said, "Those are fairy stories."

That was two years' ago. (That doesn't mean I might not have a relapse anyway because five years is the mark, but I've enjoyed the last two years at full steam).

Be brave.

Say No.

It could save your life.

the stuff you hate

why is it that so often the stuff you hate doing - like getting out of bed to jump into a freezing cold pool, or eating a bowl of broccoli instead of banana bread, or dropping off the kids at school in the morning (or picking them up in the afternoon) - ends up making you feel so good? quite often, as soon as you've won the battle against inertia and gotten warmed up enough that the water starts to feel comfortable, you actually ENJOY it.

i swear i am eating broccoli right now. in my bathing suit, just about to go to the pool. see?

for years, my exhusband picked up the amazons in the morning and dropped them off at school. then, for reasons he will explain, somehow related to boundaries or something, he told them he would not.

so i took over. after i drag myself out of bed, rush them through breakfast and then grouchily get them into the minivan, i discover that i love the anticipation humming through the car. i sometimes ask them about their classes. we take stock of what was forgotten at home and how to deal with it. i hear about the plans for the afternoon. if we pick up a couple of their friends along the way, i eavesdrop on their gossip and get a sense of the temperature of the moment. there are good reasons why they should be more responsible and get there themselves - and some days i force them to.  90% of the time, i take them.

then when we get to school, if i can get a parking spot, i walk them in. mainly for one reason: so i can walk out into the stream of kids coming in.

the best thing about the united nations international school in nyc - apart from it being a vast range of cultures and races - is that it goes from kindergarten to twelfth-grade. i get to see the kindergarten's wide-open faces as they skip into school under their enormous, colorful backpacks. i love that so often, they still want to hold a parent's hand. i get to see the toddler siblings running and tripping, looking adoringly at their big brothers or sisters. the junior schoolers on their scooters or dressed in costumes for a class event. the middle-schoolers proudly balancing projects, dioramas and posters and boxes of cupcakes, as they march in with a sense of purpose. they feel so grown-up, they own the school now and they know where they are going.

and then those bleary-eyed teenagers, the girls still awkward in occasional heels and those tiny tiny shorts and skirts, dripping with make-up (they have to start somewhere!) the boys, still just boys, their faces sometimes red and smarting from the occasional shave, and in their big men's bodies that they don't know what to do with. even if it's spring, there's a bit of chill in the morning air, because the day is just beginning.

sometimes, i just start laughing to myself because i was once a kindergartener, a fourth-grader, a thirteen year-old and a high school senior. i can see myself and the amazons in every one of them.

don't you remember holding the hand of your first-grader and looking with terror at those enormous, threatening adolescents and wondering how yours would ever make it? and now, looking at those upper schoolers and realizing that they are just as vulnerable and fragile as the little kids.

because it's u.n.i.s., they are often speaking different languages and wearing vastly different clothes (until they turn into teenagers). sarah kay, the brilliant young performance poet, was a u.n.i.s. student. so was ishmael beah, the child soldier who wrote "a long way home," and sarah jones, the actor who can be 15 different nationalities consecutively in her one-woman show and john zorn, the experimental musician.

because it's u.n.i.s, the school guards and teachers have seen the kids go from bright-eyed five year-olds to defiant adolescents and they don't let them get away with anything. the authorities watch them walk in with a sense of care and discipline as well as affection. one guard i've known for 14 years said to me almost bursting with pride, "look at those kids, they are all happy to be here!" because it's u.n.i.s., the kids seem to walk in smiling - even the upper schoolers with their intense academic pressures and clear lack of sleep - and the excitement of the day to come is almost palpable.

when i get back into my car, i'm smiling too. i'm exhilarated by the optimism. i have perspective - that irritating job is just a job, the traffic and the weather will be different tomorrow.

 like finishing the broccoli and moving on to kale (i REALLY am right now), i'm energized and almost euphoric. it's a meditation in itself. how can anyone feel bad with all those smiling kids promising you a better world?

in my mind, the best way to stay healthy and happy is to stay engaged. to revel in the spirit of others and stay buoyant and purposeful.

you're here because they need you here. WE need you here. you need their energy and positivity as much as they need yours.

muslims are constantly told to be generous, that anything you give away, God will repay ten-fold. i believe that includes your energy. it's an effort but it pays off in a big way. every faith tells us that.

we're all in this together, that's what dropping the amazons off at school makes me remember. we're all on the same path.

that's why the stuff we hate to do is quite often the most crucial.

off to immerse myself in cold water! (lap swimming when i really would rather have another cup of tea, remember?)

The C-Word: As if we were having a cup of tea together

Maybe a conversation. Not just a letter. As if we were having a cup of tea together. Think a quiet afternoon, the sun is fading but the cups still have a certain luminosity.

I don't know you, so perhaps it's presumptious to call you a friend. Quite possibly, we have different politics, different religions - or different perspectives on the same religion - different cultural and economic backgrounds. I live in New York City, I'm a Muslim and pretty far to the left. I've got kids and a dog and some exhusbands and maybe you do, too or maybe you don't.

I know that you are a friend of my friend Robbie Goolrick who is a beautiful, gifted, caring spirit. He mobilized a hundred new friends for me when I was at my lowest point. They answered my phone calls and commented on my facebook and blogposts and sent me lovely gifts. I am holding out my hand for you to squeeze when something really hurts because I know some of what you're going through. I don't want you to do it alone.

Of course, everyone's journey through cancer (or any one of the plagues, diabetes, lupus, eating disorders, depression that swallow us in these modern times) is personal and unique. I just want you to know I am here. If, in my endless search for information and magic, I can help you, or even save you a few steps when you are exhausted, I am here.

Years ago, there was a study that showed that people who were prayed for got better faster. It didn't seem to matter who did the praying - Buddhist monks or Carmelite nuns or congregations of Jews or Muslims or Hindus - and it didn't matter if the people who were prayed for were the same religion or even if they knew, they seemed to get better. Not long after that, there was another study that discredited the first one. An then another that gave credence again to intercessory prayer. My 16 year-old daughter sneered when I asked her to say a prayer for a schoolmate who is suffering, "That doesn't work, my teacher (an atheist) proved it..." But still, even though she says I am biased, I feel the collective energy of people channeling the Source can make a difference. I believe in the power of the crowd (as well as the Divine).

This is purely anecdotal, because I got my information from speaking to chemo nurses, but it seems that people who have social support - and that's more than facebook - people who have friends and family members to help them through the rollercoaster of getting well, get well. or get well faster. Loneliness really can kill you. Whether it's self-imposed isolation or by necessity, this is a moment to start reconnecting. Because honestly, as someone who's been close to death before, and someone who's struggled through some hard odds, sometimes the opportunity to leave all the drama of the material world is really appealing.

The reason you work to stay here is all those people who love you. They make you laugh, make the pain less intense, give the moments that you are here more weight and resonance. Even when you find yourself alone again, a friend's insights can change the direction of your thoughts, add a lightness. The scent from the flowers left by a friend makes your senses more clear and sparkling. This weekend, the cover of New York Times about health said, "All in our Minds." Though the articles were really about ways to improve brain function, it begs the question of mind over body.

When I was at my lowest point in my struggle, when the chemo and the endless hospital stays and the nausea and my hideous looks overwhelmed me, I realized that I had to make a decision to end the suffering. So I told my oncologist, "I believe that I am well. I don't have cancer any more." She, of course, told me I was out of mind and sent a pack of psychiatrists to question me about my "death wish." I just kept saying, "I am well. And if I believe I am well, I will be. I am just going to concentrate on believing I am healthy."

Of course, today most people would never guess how sick I was. Maybe that worked. Maybe it was the green juice, the raw food, the acupuncture, all the great advice online, the supplements, the swimming, the pilates, the psychic healer, the people praying for me - my Sufi circle, Muslims, Jews, Hindus, Christians, Buddhists, even a couple of atheists who got really worried - and maybe it was my friends willing me to stay.

Today, when I go to Memorial Sloan Kettering, my oncologist says, "Huh." But she doesn't really know. That's why I am telling you that you will make it. Because you have friends like Robbie who love you and are filling you with their energy to keep you strong and flexible. I believe that every time someone we love suffers or falls, we all lose a bit of our energy. It's like a leak in the collective unconscious.

Sip your tea slowly. I've taken out the tea leaves so it won't get bitter.

You might feel weak, but you are powerful. You are well. You will find it. Your friends need you here. Call on us, we are waiting to serve. We are here for you. Whenever you are ready. Welcome home.

The C-Word: What the Hell IS Chemotherapy Really?

so when i was diagnosed with cancer, i imagined the whole process differently.

i thought it would be a 21st-century consumption. a romantic, wasting away that left you with high, flushed cheeks and glistening eyes. you entertained sympathetic visitors in your flower-filled hospital room, looking pale and thin and pretty (because, secretly, years in the fashion business made me swallow the you-can-never-be-too-rich-or-too-thin adage. i was not rich but the cancer meant i could win the thin part).

while cancer is indeed a 21st-century epidemic - and i have lots to say about women's bodies and how we are manifesting what we, as a species, have done to the planet and our psyches - it is NOT romantic.

or only in stories. or gossip girl.

in reality, the treatment is painful and drawn-out. and being too thin is hideous. when i was rail-thin as a witch in an arthur rackham drawing, i looked at the lush, full bodies of healthy, normal people with envy.

so they've told you that you need chemo. NOW. but no one really says what that means.

here's what chemotherapy is. it's a drug cocktail - i used to call it dry cleaning fluid mixed with battery acid - that is mixed up, often with a saline solution, to kill the cancer cells.

at memorial sloan kettering, they give you orange flash cards with the names of each drug they are going to give you. the names are usually long and somewhat unpronouceable. the cards list all the possible side-effects of each drug. i'm guessing they do something similar at every hospital.

again, it's a frightening moment. if you have the presence of mind to read that stuff straightaway, go for it. otherwise, give them to your friend or family member to ask them to make sense of it and save it for you. or put them in your bag. but do make sure they are saved because otherwise you'll never remember the names. read it yourself in a day or two when the drugs have worn off.

the thing is - even though the side-effects sound like a list of horror movie special effects - you can't really do anything about it. that's what they believe will kill your particular cancer. very rarely, they will substitute one drug for another, but it's usually only if it doesn't kill the cancer, not if the side effects are awful.

the cocktail is served to you in an i.v. so that it enters the body quicker and doesn't have to go through your stomach.

so you go to the hospital at whatever intervals are your treatment. in my case, it was once a week. if your chemo has to be given to you in a slow drip, they might need to keep you overnight. if not, you can do it in a couple of hours as an outpatient.

for an outpatient procedure, you get to the hospital a few minutes before your appointment so you can get a couple of big chairs by the window. the assistants tell you to drop off a paper at the lab. in a few minutes, the nurses call you in for your standard vitals - blood pressure, your weight, maybe a blood test for your cancer markers (if that's how they measure it) and your potassium levels (if they are affected by the chemo). if you have a cold or a flu, they might ask you to reschedule. mainly because most people who are getting chemo have compromised immune systems and you don't want to infect anyone else.

then you sit and wait. i suggest you bring a book. maybe some magazines. in my case, i would sometimes get so nervous i couldn't read. sometimes i would bring a laptop that i could watch a movie on. or best of all, i'd bring a friend and engage in some catch-up conversation or juicy gossip (if you're in the mood).

they have to mix up the cocktail fresh for you. that can take an hour or two. there are several reasons why they can't mix it in advance. the stuff is volatile and corrosive. it could eat through the bag. it could explode. it could cancel itself out.

sort of like hair dye if you've ever tried to dye your hair from a box (like china chow - there's no shame in that.)

when your chemo mix is ready, they summon you from the comfortable waiting room filled with overstuffed chairs and the coffee machine.

an assistant leads you to a place that's more standard-issue hospital.

tiled floors, fluorescent lights that make everything a little dingy and green-tinted. if you have the kind of chemo that requires you to lie down, they might take you to a room with a pretty white twin bed and lots of plants. but usually, you're sitting in a big lazy-boy type reclining chair. if you have a friend with you, s/he gets a chair, too.

all around you are other people in similar chairs, all attached to i.v.s, some working, knitting, chatting. i prefer to bring a friend with a good dark sense of humor because then you can laugh through the whole experience.

a nurse comes and attaches a catheter to your arm - this involves injecting you with an enormous looking needle. over time, this gets more complicated because chemo "exhausts" (or destroys) your veins, so they can't use the same ones over again. and they have to keep moving up your arm because otherwise the chemo medicine can leak out of the higher point and eat through your flesh. (really).

for that reason, many people choose to have a semi-permanent catheter - or port- placed in their sternum. that way, for the duration of their treatment, they don't need a new jab every time.

the port has a lot of benefits. chemo is cumulative. the doctors and nurses and orderlies will tell that to you over and over again and you won't believe it til you start to feel it. at first, you'll think you're the exception. that chemo doesn't really bother you at all. but as the chemo kicks in, and you grow weaker and thinner and more tired, you feel pain more, and a sloppy chemo nurse rooting around for a good vein can really hurt you.

on the other hand, i wanted to be able to keep swimming and doing pilates. i didn't want a plastic plug attached to my chest as a constant reminder of being sick. so i chose not to do it. on top of it all, i had convinced myself that i was not sick at all so i thought the chemo would be over too quickly.

at the same time as they plug you into the IV, they give you a small dixie cup of pills. those pills are anti-nausea medicine and steroids of one kind or another. the point of the steroids is to also counteract the nausea and the exhaustion caused by the chemotherapy drugs. since i am small and skinny, a friend told me not to take the steroids as they would eat away at my bones. so, after 6 weeks, i refused the prednisone and dealt with the nausea instead (but even with that limited dose, a bone density scan showed osteoporosis in my hips and lower spine so it's lucky i quit when i did). huge doses of ginger worked well.

they start the process by flushing your veins with a saline solution. for me, that gave me a cold rush through my arm and hands. then they plug the chemo bag into the saline bag. in my case, i had a "push" - a shot of a particular chemo drug that needed to be in my body fast. the chemo nurse would put a pillow in her lap, take my arm and shoot it into the catheter all at once.

for me, this was the worst part. it caused a surge of burning pain from my arm up and over my shoulder and a hit of nausea like the roller coaster had just dropped me a thousand feet. i usually felt the burn in my stomach as well as the ginger kicked in. i have a pretty high pain threshold and i still hated it.

after that, things get a little easier. you sit and wait for the bags of liquid to slowly move through the drip into your body. this takes a few hours. if, in the process, you have to go to the bathroom, you have to unplug your unit, roll the cord up around it and wheel it along with you to the toilet. it's usually a little difficult to get the machine over the bump at the door so i suggest you don't wait until the last minute.

eventually, it's 2 or 3 hours' later - that's why gossip and jokes are good - and they unplug you. you pick up your bags and go home. if you're taking the steroids, you feel a bit weak but it's no worse than a flu and you can usually take the subway home by yourself. if you're not, you're usually wobbly and slightly dizzy and then it's nice to take a cab or have someone drive you. you'll probably want to go straight to bed when you get home.

somewhere in the last hour of your chemo, the nurse should have delivered a small paperbag of your prescriptions that you will take when you get home. there's a tablet that is meant to neutralize the effects of the chemo drugs - the antidote - which is important to take exactly at the time you're told to do so.

then there are extra anti-nausea pills (non-steroid ones) and possibly pain and anti-anxiety medication. but keep in mind that the anti-nausea and pain stuff can quite often cause constipation (by overly relaxing your muscles so they just don't contract) so if you choose to take them, take all the laxatives they give you, too.

personally, i try to take as little as possible. you've already flooded your system with drugs and all of them have side-effects. that said, cancer treatments are awful and you need to give yourself a little love, too. whatever you do, make sure you are soothing your soul, too.

the doctors will tell you that it doesn't make a difference what you eat, but there are lots of scientific studies telling you that it does. plus, you will feel less like an invalid and more in-control if you take charge of your diet. i suggest eating kale, broccoli, cabbage, cauliflower and brussel sprouts in large quantities, raw if possible, lots of green vegetable juice, seeds, nuts and very little protein. please, please, please don't have any simple sugars or alcohol. i promise you will feel so much better. and when the chemo is over, you will recover faster.

oh - and the big question you really want to know. how long before you start looking like an alien? your hair doesn't all fall out right away. in my case, i'd had three weeks of treatment before i took a shower and found that it looked like i'd drowned a small animal in the drain. but even then, it's more like a slow shedding.

your hair falls out in patches. this can lead to unattractive results. that's why i'd recommend going to a hair dresser and getting your head shaved as soon as your hair starts falling out.

then you get a sense of the shape of your skull and whether you want to wear a wig or a hat or nothing at all.

also some people don't lose their hair. i've never met one of those people, but that's what i've heard. certain drugs don't make your hair fall out. i didn't lose my eyelashes and eyebrows until i was 10 weeks into it.

i didn't have radiation but apparently, you don't lose your hair if that's the treatment you get. i will talk to a couple of friends who had radiation and explain it later.

The C-Word - Love and Cancer

I was at a book reading recently, chatting up a woman about all my book ideas about cancer, being a single Muslim mother in Tribeca (it goes on and on). The woman is an editor so it seemed like an opportunity. Been out of the literary world for so long that I am grasping at any straws I imagine. Now, instead looking for possible third husbands at events, I hunt down anyone who has anything to do with writing. I hope that somehow, my story will seduce them. People who have nothing to do with books seem fascinated, anyway.

She told me about a novel that everyone was talking about, [SIC], written by Joshua Cody. What she found fascinating, she said, was that he was so interested in sex. His book is a raunchy and musical ride through his romantic and occasionally drug-addled adventures whilst undergoing a very difficult treatment.

Reading more about the book – I am sorry to say I haven’t read it entirely yet - I find myself both cowed by the beauty and poetry of his writing and shocked by the sheer nakedness of it. He writes about his experiences vividly.

My own version of cancer seems tame and predictable in his shadow – he sneers at the pastel-covered cancer memoir genre: diagnosis, realization that life is wonderful, and eventually moving to a little cabin in Vermont . I would inspire only disdain. His is a dangerous, vicious, thrilling book. All the things I once thought I was. Now I’ve unwittingly fallen into the standard cancer-memoir-protocol though I’ve never read one. (Albeit with no cabin in Vermont. I am still in my leaky, garage of an apartment in Tribeca).

But I find myself relating to his book in another way. If nothing else, when you are single when you have cancer, you long to have someone chronicle the transformation of your body. In the same way that when you are pregnant, your body bloats and ripens and turns into another beast entirely, your body when you have cancer, morphs and betrays your expectations again.

It is both frightening and beautiful, in the way that a Francis Bacon painting is - a beautiful ode to the human form, even in its most grotesque condition. While having chemo, one’s skin turns pale. At times, blue, at times, mottled with red spots. The flesh seems to fall off the bones. And the bones, those bones, become so sharp and apparent. You lose your hair – and people forget – but that means ALL your hair, on every inch of your body. There is something alien about the body so hairless and pale, I wanted to take pictures to explore the strangeness.

In my case, my fingers and tongue took on a blackish tint as if stained with ink. I had tiny, burning sores on my cheeks and wide swaths of little blisters on my ribs, like stripes. I think about the woman in the cancer support group in Fight Club. Bald and wasting away, she was dying to find a one-night stand before she left the world. When I first attempted the occasional date again, not long after I stopped treatment, a guy told me I reminded him of her. I protested, I was so mild-mannered – but the desperation and loneliness must have been obvious.

My cheeks and eyes were sunken and my lashless eyelids were burning and swollen. My eyes stayed bloodshot for months afterwards. While I didn’t approach anyone, I longed for a warm body in the bed beside me. To be held and kissed by a being still surging with life, still pliant with flesh. I felt like a succubus, yearning to feel someone else’s life force inside me.

Perhaps, though, because I refused the steroids and tried to keep up with Pilates, I never had the adrenaline-fueled energy to roam the streets at night or to go to parties and bars, like the character in [SIC]. I generally was in bed by 9, usually with Rara, who was just 10 years old and frightened, wrapped around me like a scarf and my mother sleeping fitfully on the sofa, a few feet away.

And then of course, there is the movie, 50/50. That very funny Seth Rogan comedy about a young guy (played Joseph Gordon-Levitt) who gets cancer. http://www.telegraph.co.uk/culture/film/starsandstories/8824832/Joseph-Gordon-Levitt-How-I-made-cancer-funny.html Since his insane girlfriend cheats on him, he is forced to go to bars with his buddy who uses his friend’s cancer as a pick-up line.

This is where the cancer experience of women and men parts ways. The line, as everyone knows, would bomb. Basically, women (not all, but most) are hardwired to want to take care of people. A woman will sleep with a man because she feels sorry for him. A man? Not often.

The statistics are something like this: three out of four men leave their wives/partners within a year of their cancer diagnosis. http://www.politicsdaily.com/2009/05/07/marriage-and-cancer-a-fairy-tale-it-aint/ A woman is six times more likely to be separated or divorced after a cancer or MS diagnosis. http://www.sciencedaily.com/releases/2009/11/091110105401.html

While the narrator in [SIC] had an encounter with a fellow cancer patient, she was an exmodel. And even then, she didn’t come looking great.

For the most part, if you are a woman, telling a potential suitor you have cancer (or even HAD cancer) is akin to telling him you’re a leper.

Add to that, three very tough and fashion-fascist daughters, very involved parents, complicated exhusbands and the disastrous ruins of my financial life post-cancer and mid-recession; and almost anyone I met would run screaming in the other direction.

I did have one date, not long after the chemo finished. I did my best to ice my eyes and tried to use make-up to make up for the pallor and lack of hair, eyebrows and eyelashes. Upon shaking my boney hand, he looked pale himself. He tried to squirm out so quickly. He had barely received his order before he looked at cellphone and remembered another appointment in Williamsburg that he was already late for.

Perhaps that’s why I watched the first season of “The Big C” with such satisfaction. Laura Linney chose to simply live with her cancer. She chose to enjoy the languid pleasures of summer without disclosing it and live as if every day was her last. Luckily for her, her cancer moved slowly enough to allow her to drag it out.

Perhaps that’s why, only months after I finished treatments, I fell head over heels for a sweet 27 year-old.

Now that I am well, possibly temporarily, but I like to believe, at least long enough to see my daughters out of college. I find myself longing for someone who knows my history. Who can appreciate the transformations of my life and body and appreciate, with satisfaction and understanding, where I am.

The same way in which, you call your old friends after you get run a marathon or lose 10 pounds, you want to someone who can really tell you how far you’ve come. Someone who recognizes the “you” in your new form. Someone who has patience and gentleness with your kids.

No house in Vermont yet. No new love story. Or nothing with legs. Despite that, as it turns out, I am still the cliché. Hopeful and optimistic. Looking at the life surging through the plants and animals and humans around me with awe.

Of course, there are times, when life hits me in the head so hard, I wish I’d had a ticket out of here. The material world can be harsh when you start slipping. People get tired of someone who goes on struggling. I get tired of it myself.

But on a strangely spring day in the middle of February, I am very grateful to be around for just one more.

little angels and my demons

last week - or maybe the week before, i went to a screening of "little angels," a series of books and dvds for young children. it was created and narrated by roma downey, the irish actress from "touched by an angel." the screening was at the chic, ultramodern four seasons hotel on 57th street, they served us a beautiful buffet lunch on silver platters. the room was filled with "mommy bloggers," children and babies.

i was especially interested in the project for several reasons. the main one being my obsession with the irishwoman lorna byrne, whose book, angels in my hair, is all about her interactions with angels. all of a sudden, i seem to be meeting irishwomen who know the names of all the angels (are they more connected than us?)

while i'd always thought the idea of angels and guardian angels was sweet and pleasant, sort of like flower fairies, i never took it very seriously.

sometime last month, i had a crazy, hallucinogenic, rollercoaster of an experience with a psychic who also spoke to angels, though in a more subtle way. it was shocking and unnerving, so i started to take the idea more seriously.

what interested me most about all these encounters was the number of spiritual traditions that have angels - muslims, christians and jews all talk about the abrahamic angels, gabriel, michael, izrail... hindus and buddhists have apsaras and devas, spiritual beings who behave similarly to angels. and, of course, lorna byrne expressing her message from the angels - that people of different faiths and backgrounds begin to pray together.

from what i understand, the idea of the sweet "little angels" series is passing on moral and emotional guidance to young children and letting them know that they are loved. the stories of the modern-day children are interspersed with bible stories that explain the principles being taught, like perseverance, empathy and cooperation and belief in a higher power.

at the screening, i raised my hand and asked roma how the series dealt with different faith traditions.

roma said, "we don't. this is very christian-based, though of course, kindness and sharing are good lessons for everyone."

then, of course, a number of other parents chimed in and expressed their appreciation that she was passing on christian values and messages. i should add that, though the human children in the story are caucasian, the angels (which look like little children with wings) are multicultural. the show is very cute and watchable. my two year-old nephew, omaid, loved it. and he loves veggie tales, too.

so i sat there transposing the idea into my own muslim-interfaith-centric point-of-view. i asked myself some questions. for instance, if muslim stories (most of which are actually christian and jewish stories, too, because islam comes from the abrahamic tradition) were presented for children with no interfaith perspective, would i be bothered? is the message from the allegories enough?

was my reaction bigotry or prejudice on my part?

i hope not.

my concerns were this. one, there are already a lot of books and tv shows for children, veggie tales, for instance, or davey and goliath or gumby that express a christian or biblical perspective in a friendly, appealing way (LOVED those when i was little). two, there are also good muslim, jewish, christian and hindu versions of character and moral-building stories illustrated by religious texts.

and three, while i don't know of any modern animation specific to angels in our midst, the idea of angels/devas/apsaras, especially guardian angels, is something that is told to young children all over the world.

i value the idea of letting children know that there are spiritual beings that exist and connect them to something greater but somehow, i felt like "little angels" was too small, too limited. it reminded me a little of timmy and his fairy godparents, the fairly odd parents, except that the angels don't grant wishes and the stories are more reverent and Bible-based.


in my mind, i feel like we need to teach our children how the angels are connected to us - but also how we are connected to everyone and everything else. that Divine energy runs through all of us, that there is no separation. that LOVE really is everything.


while a faith tradition is important, we need to remember that it is culture, like clothing, a language, a skin color. it is something that serves a purpose, but while it looks or sounds different, it all has the same value, the same reason.

underneath, we are all the same.

feeling unsatisfied, i approached roma at the end of the screening. i introduced myself and told her what a great project it was.

she said, "thank you so much. you're a muslim? i've met your king."

i must have looked blank (who knew there was a king of all the muslims?) so she added, "king abdullah... and his lovely wife."

i muttered, "king abdullah of jordan, oh..."

she seemed to realize i was lost and said, "what country do you come from?"

i said something about my ethnic origin being indian and she said she had been there and then our conversation collapsed a bit.

i asked her how they might address the interfaith issues and she said, "we don't plan to. we are in wal-mart all over the united states starting today and we feel mainstream christians are a much bigger audience."

she said it kindly, not dismissively. she was clearly trying to be approachable so it didn't seem like a good place to argue my point. but i was disappointed. if the series really reaches young christian children all over the united states - maybe even all over the world - how much more powerful the message could be,

how much more powerful the lasting implications of telling young children that we are all one.

people who've told me they speak to angels always clarify, angels are different than humans. we don't become each other. angels don't become babies and people who've passed into the next world don't turn into angels.

as humans, i am told, we are actually much greater than angels, our light is brighter and more able to impact each other and the physical world.

and as children, as everyone from educators to scientists to psychics will tell you, our creative powers are at their peak.

in my mind, the idea should be to find a way for young children to hold on their innate knowledge without reducing it to a single faith or tradition or culture. without being too cute or cheesy or hokey or predictable. keeping somehow the magical, ethereal nature of what we need to communicate.

is that impossible? or are we just not there yet?


time to walk the dog.

Love, Inshallah

i went to a reading last night for a new anthology called Love, Inshallah.

sadly, i am so broke right now that i can't possibly afford it, but i am SO happy. the response has been positive - and let's be honest - i am also completely thrilled that i am not the only "fallen" muslim woman in the fold.

when was in my late teens, my mother used to say to me, "lots of girls do what you do, of course, they do, but no one else does it so openly, why do you insist on writing about everything so it's all there for everyone to see. people don't like that." when Bombay Talkie came out, i might as well have sewed a scarlet letter on my chest.

so i stood up at the reading and thanked them for taking on the mantle. Alhamdullilah, i am no longer the only muslim woman to write about being divorced.

from what i heard at the reading and on amazon, the anthology cast a wide net from the sacred to the profane and back again. i am so relieved to have all these women on my side. one speaker's statement at the packed reading (at bluestocking books in the lower eastside), paraphrased because i was sitting so far in the back, i couldn't see her (and i don't remember it properly), "my Islam and my God is so loving and compassionate that I know that I am always welcome there... it is a part of me."

exactly how i feel about my relationship with the Divine now. phew. i found my tribe. even though i found them a bit late. they even talked about the woman-led muslim prayer service in nyc that i dragged my daughters to in 2006.

at the end of the reading, where you stand around holding all your stuff as they fold up the chairs, get overheated as you hug your coat and bag in the stuffy room, i was approached by a friendly woman with gorgeous brown eyes and a headscarf. we started talking about divorce. she was divorced, too, with a young son. we shared some stories about how our families and friends reacted to our situations. then she started asking me a lot of questions about my feelings about sexuality post-marriage and as well as the rules i was enforcing for my teenaged daughters. i was a bit taken aback.

i realized that in the exchange, i was the one being judgemental. i was the one assuming that this woman in hijab would be judging my choices so i was hesitant to express them. i felt like she would look at my miniskirt and t-shirt and my daughter and think, "well, this one is going to hell in a handbasket..."

real life's been a series of misunderstandings for me at the moment, so i was tense already and assuming the worst. not the best moment to build bridges. made me think of a conversation i'd had with some friends from the mosque about things that are "haram" (forbidden for muslims). we were at pop burger after a movie screening. it was a playful dinner conversation about what they would like to do if it weren't forbidden. when it came to me, i said, "i already tried everything i wanted to do!" (i meant to add - if i didn't try it, it's because i never wanted to anyway).

i wasn't sure what to tell the lovely woman in hijab in front of me - especially after all my stupid bravado of standing up during the reading and outing myself as a licentious, divorced writer in front of my 13 year-old - so it wasn't like i could play all demure and reticent now.

i tried to wriggle out of the conversation but she held me there and said, "as women, we need to start talking to each other, we need to stop criticizing, stop judging..."

in that instant, i remembered that that was exactly what i'd said all along. she was right. she is right. we need to look past other people's external choices for how they interpret faith. it is about accepting and respecting everyone's practice.

understanding and compassion.

i don't have nearly enough of it. harder still when i am under pressure - but isn't that when it's most important?

and isn't that the reason for the book? reminding us to see our common humanity.

"yes," i told her and gave her my information. "we're all in this together. please call or email me, let's have coffee."