Friday, February 15, 2013

The C-Word: friends, family and other disasters

one of my most vivid cancer memories is checking my cellphone midway through a chemotherapy session and seeing a text from my friend and upstairs neighbor: "your kids seem to be having a party."

ah. when faced with a parent-free home on the weekend, what would most teenagers do?

when i was first diagnosed with cancer, my teenagers were on the cusp of adolescent fever. sasha was 16, but gentle, sweet and cautious. zarina was just 13 and wearing the array of party dresses she'd accumulated for her year of bar and bat mitzvahs. jahanara was 9 and babied by her older sisters. (fortunately, she was at her father's house that night).

the party went on to be a complete bust. they smuggled in a 6-pack of mike's hard lemonade (a small amount of vodka watered down with sugary lemonade). one young friend knocked back a fifth of vodka and collapsed on the floor.

which had the slightly positive result of adults barging in to get him to a doctor and breaking it all up.

that was just the beginning. all the teenagers spun out of control for a little while. they were so angry and desperately attached to me at the same time.

the point of this story is that when you get cancer, the reactions of the people around you are completely unpredictable.

just when you most need your kids to be dependable, they act out. when you need your parents or aunts and uncles to love you unconditionally, they point out the reasons (they believe) you got cancer in the first place. some friends rise beautifully to the occasion, some acquaintances turn into confidants, some vanish.

now i address two audiences...

one: you are a person currently has cancer or some other debilitating illness or

two: you are a friend or family member of a person (i hope just one at a time) struggling with cancer or other debilitating illness or circumstance.

ONE, you're in it. you're the cancer sufferer.

yes, it's intense, probably the most overwhelming experience in your life. it's hard not to be cross with your friends when they get to get up and walk out of the hospital room back to real life.

they get to wash their hands, leave and get a coffee at starbucks or get in the car and drive home. their bodies probably don't ache and they can move their arms and legs comfortably and eat everything they want without feeling sick.

what i was most envious of my friends when i was sick was their control over their lives. all those choices and options. when you are really sick, you end up having to hand over control to everyone else. it's like being a baby. most of the time, you are grateful for the help. but sometimes, you just want to get up and make your own dinner just the way you like it. sometimes, you are sick of the way your caretaker makes a stir fry every single night because she can't think of what else to do with all the vegetables you need to eat.
here's what you need to do:

remember that people WANT to help you. be gentle with them.

1. when they ask you if they can help, give them specific tasks.

an errand - "would you mind stopping at wholefoods and getting me more fresh turmeric root or some dark chocolate?"

a meal - ask them to cook or bring you something you are dying to eat. in order to avoid disappointment, be clear. say, "i can't eat dairy or i hate okra or thyme is my least favorite herb" (those are all my issues). or be even more specific, point them in the direction of a recipe or restaurant you like.

babysitting - take your kids shoeshopping or out to lunch or the movies. sometimes, when their parent is sick, the home can feel a little oppressive to them. they need light and air. it's good to get them out and laughing. just tell your friend not to get all heavy with them.

organizing - personally, i LOVE people to come and open my mail and throw away all the junk and file all the bills. or put all the books in the bookshelf properly. or open the cupboards in the kitchen and put the plates and bowls in order. i love it even more if they don't make comments about my sloppiness or financial insolvency at the same time.

phone calls - if a friend can't come visit or is too faraway, you could ask them to make calls for you. maybe ask them to return a bunch of phone messages, or help you research something, or call your dry cleaner or the electric company or anywhere you can't (or you're too tired to) email.

any of these are so much more useful and less expensive than a half-wilted bunch of flowers from the supermarket.

2. don't get irritated when they don't do things the way you want.

everyone is frightened and trying to do the best they can. actually, this is good advice any time anyone who loves you does something for you. if you are a control freak like me or you are feeling anxious while you are sick, this is very hard to do.

sometimes your exhusband is going to buy them shoes that are highly impractical, your boyfriend is going to forget the organic coconut water, your mum is going to cook the broccoli til its soggy, your friend is going to bring you ginger rather than turmeric root and you just have to say, "thank you."

because they all deserve acknowledgement and love for their efforts. and just because they do things differently, doesn't mean that they do things wrong.

in other words, maybe you really NEEDED ginger (very good for nausea) and you didn't realize it.

breathe. be grateful.

3. be loving with the friends and family members who disappear. or behave badly.

one of the amazons said, "i hope you get cancer all over your body and die." some friends dropped off the face of the earth.

it is so scary. so incredibly scary to watch someone you really care about getting very weak or thin or losing their hair. if the sick person is one's parent, imagine how scary it is to lose the person who is meant to look after you, especially when you are not ready for it.

remember that everyone is processing information in their own way. that we are all in different stages of evolution. and that you never know what is happening in your friend's personal life, or what happened in his or her personal history that is activated by your illness.

your illness is a difficult circumstance. the person's reaction now doesn't negate any of your history. and it probably means that he or she still loves you, she just has her own stuff to cope with.

if your friend or family member uses the opportunity of your cancer to "punish" you for some perceived mistakes in your life, remember that he/she is doing that because he's invested in you in some way.

breathe. it's all about love. and fear.

you need to use the former to get over the latter.

that can mean faith - choose whichever one speaks to you - use Love or God or Universal Intelligence to focus on the bigger picture, to put it all into perspective. in my case, it meant Sufi chanting, repeating the name of God endlessly on a string of beads.

try and stay connected to Source. that energy coursing through you will help you be transcendant. don't get pulled down into anyone else's struggle.

day-to-day anxiety and tension is part of the reason you got sick to begin with. so if they start to get to you, fly away. even if it's just in spirit.

keep breathing.

TWO, you are a friend or family member.

1. please come and visit.

especially in the hospital during chemotherapy. chemotherapy, for most people, means sitting for hours or days in a chair or a bed with an i.v. attached to your arm. sometimes it burns terribly as it goes in. sometimes it makes you dizzy or nauseated. if you are near enough to spare an hour or two, please come and tell the person jokes while they are confined. it can get lonely and tedious.

sometimes, the person getting chemo can't see properly, so don't bring anything too complicated, but a silly video on an ipad or a laptop is great. or come and sit beside the person and distract them with funny stories or gossip. if you're really stuck, get some of those stupid celebrity magazines they have in the nail salon. you can laugh about kim kardashian's outfit or speculate on whether jessica chastain is jealous of jennifer lawrence. anything superficial and idiotic is a relief.

in the hospital, one lies there waiting for their insipid meals, so it's wonderful to have someone come to hang out with you. maybe bring something fun from outside, like slipper socks to wear from the bed to the bathroom. or a really nice organic hand lotion or a box of organic blueberries.

2. please be a little flexible.

when one gets home from chemo, one feels horrid. it's exhausting. one just wants to get into one's own bed and lie quietly. no conversation. i liked company on my up days, but i also had lots to do because i only had three days a week when i could walk around outside and not feel awful or drained.

so what i mean is - try to find out which days are better for visiting. maybe email or text your friend or his/her caretaker to get a sense of the rhythm of things.

if you come over and your friend isn't there, drop off your gift or card and don't get your feelings hurt. or if you come over and your friend just doesn't feel like seeing someone, just come another time.

when you come to someone's home, don't stay for too long. your friend gets tired easily. leave before you notice her/him fading.

3. don't telephone.

personally, i found it really difficult to talk on the phone. it made me dizzy and nauseated. i am not sure if all people undergoing chemo have that reaction, but if the electromagnetic rays from cellphones are still being questioned, why add one more thing?

on other hand, if the person has a normal landline, maybe he/she likes talking on the phone. i didn't mind it in hospital at all.

4. come over and help.

ask if you can take the kids out for the afternoon. do a load of laundry. wash the dishes in the sink.

ask, but don't ask too much. it's embarrassing to ask for help, even if you are weak and sick. just look around and see what needs to be done. maybe ask if you could sort out the books in the bookshelf (see above) or fold and organize all the sheets and towels in the linen closet.

you could check if the apartment has all the basics, like cooking foil and plastic wrap (necessary evils), napkins, toilet paper and paper towels, eggs, milk - whatever the regular stuff is - and replenish and put away the stuff that's missing.

maybe you can help with some bookkeeping or cook dinner (just don't leave a gourmet-sized stack of pots and pans and double-boilers).

5.  listen

whatever you do, remember that the person who is sick has lost some control over his/her life. try and help your friend or family member get some back. he/she might be irritable or very picky about how he/she wants things. it's not just general unreasonableness, it's frustration.

so ask what they want and follow the instructions no matter how ridiculous.

let your friend vent. yes, of course, there are people in the world who have it worse. and you might have great ideas for your friend. but unless, he/she expresses an interest in those ideas, don't push it.

6. make them smile

if your friend is now bald and weighs 80 pounds, common wisdom says, don't comment on their appearance. personally, i preferred people being honest. the jokes about being hairless or looking like a space monkey or whatever cheered me up.

i felt like, at least they said what they were REALLY thinking. when someone said, "oh my gosh, you look great!" i never trusted them again. unless, the friend qualified it by telling me how much better i looked since i started juicing or acupuncture or whatever.

laughter is great for your immune system. just like in the hospital, tell your friend some funny stories. bring really silly dvds - though be careful you don't offend their sensibilities. since my brain was working at half-speed, i needed to watch idiotic stuff. i used to love witty humor. after chemo, i liked slapstick.

7. whatever you do, stay in touch.

if all you can do is call, call. if you stop by to visit and he/she's out for a walk, just leave a note. it makes a difference. having people around you helps you heal faster and better.

don't let your friend feel like she's in it alone.

8. it's not over til it's really over.

it can take a long time to recover from cancer. you have to recover physically, emotionally, socially, financially.

be gentle.

your friend can probably use a bit of extra support for some time. if you missed the chemo/radiation treatment part, you still have a couple of years to make up for it.

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