wavesworld

i was once a muse...

when i turned forty, lynnie gave me an incredible gift...a book of pictures that held all of the paintings she made of me...they hang in homes of people i don't know...except for the second one, which is on my wall...today she scanned them all so i could share them with you...she is quite amazing...

 

   





      

  

an interview...with me...

http://muffin.wow-womenonwriting.com/

If you haven't done so already, check out Wave's award-winning story, "my father's day", and return here for a conversation with the author! 
  
WOW: Congratulations on placing in the Winter 2010 Flash Fiction Contest! How did you begin writing this story? Does it end the way you thought it would end when you began to write it? 


Wave: well, i guess it's time for me to fess up to the truth about the fiction...it was only after i submitted my story, that i realized it was a FICTION contest...silly, of course, but it was too late...i just let it go, not expecting to make the top ten...when i discovered that i did, i began to worry. you see, my story was real. every drop of it. i wish i could say i changed the names, or something, but i didn't. i wrote it as a gift to my father in memory of his birthday. i posted it on my blog, but it was only part one that i submitted. 

WOW: Whether as fiction or non-fiction, it is definitely a compelling story and we’re very happy you shared it with us. Is there a reason you chose to write your story without using capital letters, and if so, could you share why you’ve chosen this style?

Wave: the lack of capital letters began from the combination of experiencing them as useless, in general, and the enjoyment and ease of typing as quickly as my mind moves...of course, when i have to write a business letter, i'm all about the capitals.

WOW: Which authors/books most influence your writing?

Wave: at this moment i don't know what authors and books influence my writing. i write as i speak. i love to read, but the books i most love, are not in the style that i write.

WOW: Your bio says that posting on your blog has been one of your most rewarding and healing aspects of your life. Could you describe in more detail how writing has been a positive experience for you? 

Wave: since the time i was diagnosed with metastatic breast cancer to my bones, 5.5 years ago, many of my former physical outlets were limited. i spent a lot of time hanging around in bed. at first, i began to blog as a way of sharing my medical information with my friends and family...soon enough though, i realized that i wanted to share a lot more about my experience, including my personal history, relationships, and thoughts about life and death...i began to post more often and was happily surprised to learn that there were a lot of people interested in my experience of life. i love the process, and feel like i'm missing something when i don't post for a few days. it has been a tremendous relief and release for me to share my journey through the written word. 

WOW: When I hear stories like this, I am again reminded of the mysterious powers of writing. I am so happy to hear that you have been able to tap into this power and find some relief through writing. What goals do you have for yourself as a writer, or what do you hope to accomplish as a writer?

Wave: in my ideal fantasy, my blog would become a book. i'd find a great editor, or a great editor would find me. since i've already lived past my expiration date, (knock wood) i don't have a tremendous amount of ambition for my writing beyond continuing the blog, and perhaps the book.

WOW: Keep writing – you never know what will happen! Thank you for the interview and your open, honest answers!

Interviewed by Anne Greenawalt (http://anne-greenawalt.blogspot.com/)

maybe...

a few years ago i was invited to join a group of women that wanted to learn about "the secret".  i was up for a magical way to get well. we watched the cheesiest video i've ever seen about people attracting fancy cars and jewels into their lives...i was really turned off and didn't think the secret was for me...there are very few "things" i feel clarity and conviction in asking for.   

i can easily ask the universe for the health and well being of myself, my friends and family and my kitties...and for the end of suffering in general...that's easy...but the other stuff, well, that's where it gets tricky for me. i don't always know what is truly best for me, or anyone else, for that matter...

there's very little i know about scientology, but some of their concepts make a lot of sense. like "withholds"...things that you don't share with your partner, or the people close to you.  significant things  that affect everything, even though they lie beneath the surface. the more you withhold, the less there is to share...

i thought of that today because i have been with holding things from you, my dear readers...and that's probably why i haven't been writing as much these days...too many things not to say...

in the book i'm reading about writing, the author asks  if you'd rather have a relationship with your family and friends, or a published memoir...that hit home...there are things i'd share if i didn't worry about what my peeps thought or felt...but i do worry, and i'm trying to find the balance...there are secrets i will still keep...at least for now...

but here's one i can share...you've all met people who say they found the "perfect" mate...  just when they finally gave up looking, and were convinced that they'd never find him/her,"the one" arrived...well, that's not what happened...but it does remind me of this...mitchell and i were walking home last week and there was a house around the corner for sale...and oh man, it was beautiful...the best i've seen so far...and i had given up looking...but this started a whole other round of wanting and wishing...i can see us in it...and it would completely make up for the one that got away last year...because it's better...

 i barely told anyone about it...until now...i kept it a secret due to old superstitions...i've got so many of those ...i'm putting this one out in the open, and, if nothing else, it gives me something to write about...i don't want to get my heart broken again, but i am alive and i still want, and that means heartbreak might happen... i don't know how to want without being attached to the result, but i'm learning...if i have to hide under the covers again in disappointment, so be it.  

what i can't do is pray for it, or bargain with the universe about it...because, in the long run, i don't really know if it is the best and most right thing...what we want isn't always what is best...

i've never forgotten this story, as it illustrates how i  feel about most everything...

There is a Taoist story of an old farmer who had worked his crops for many years. One day his horse ran away. Upon hearing the news, his neighbors came to visit. "Such bad luck," they said sympathetically. 

 

"Maybe," the farmer replied. The next morning the horse returned, bringing with it three other wild horses. "How wonderful," the neighbors exclaimed.

"Maybe," replied the old man. The following day, his son tried to ride one of the untamed horses, was thrown, and broke his leg. The neighbors again came to offer their sympathy on his misfortune. "Maybe," answered the farmer. The day after, military officials came to the village to draft young men into the army. Seeing that the son's leg was broken, they passed him by. The neighbors congratulated the farmer on how well things had turned out. "Maybe," said the farmer.

the linings...

i wouldn't exactly call the lining silver, but i have been getting a lot of reading done lately...that's the good news...the bad news is that it's all being done in the bathroom...whatever, at least i'm reading...stomach lining/silver lining, six of one, half dozen another. 

i'm nearly finished with that book about writing.  i got to the chapter about submitting work, and i started perculating.  when i finally made it out of the little room,  i knew i was gonna send something somewhere.. i wasn't sure what it should be, but i figured one about the movie stars might get some attention.  if you got the names, you gotta drop'em...i edited the story a bit, set up an account on more.com, and published the post for one of their contests...i was feeling pretty good about it until i re-read the piece later.  i was mildly horrified (those last two words don't work together, do they)... i noticed my errors, a couple of misspelled words and even one or two that i left out...when am i going to get that my impulses need to be reeled in. i need to think things out...what is the rush...that's what mitchell always says to me - "what is the rush"... 

in the old days, i had the same problem, but there was no email, so occasionally, when i had the presense of mind, i'd reopen my sealed envelope hours later, and think better of the angry rant or the tragic love letter i was about to send...

once, after lanie and i were in one of our arguments, i sent her a card...in this case it was a nice one, a sweet card about our friendship...i don't remember the details...but i didn't hear from her...when i finally called, she told me that she was too terrified to open the letter.  she carried it around for weeks, scared of what i was going to say...we laughed a lot over that, because we both knew it was true. those in the know, know what it means to get one of the "wave letters"...

and that's kind of what happened yesterday.  i read my brother's status report on facebook, and it bugged me. instead of pressing the dislike button (do they have one of those yet)...i messaged him, with some sarcasm and a lot of judgement...i was in a lousy mood anyway, (perhaps related to all the bathroom time)...he wrote back calmly explaining himself, and i responded with some snarky, bringing up the past statement...mitchell came into the room and i told him i was having an "argument" with my brother, and i read him all the back and forth messages...he shook his head and said, "you are so harsh"... he understood my brother's point of view...hmmm

so i thought about it, and i realized that, number one, what the hell was it my business anyway, and *number two*, (oh, i've got to stop putting those words together - bad memories), forget number two...i sent him an apology and my brother responded graciously...far more gracious than i would've been if someone had given me that kind of attitude...afterwards,  i felt better and i guess he did too...how many more times must i get it before i actually get it...

 

we were there...and still, we are here...

i threw a bunch of kleenex into my bag this morning. i told frank at breakfast that i had a stash just in case he needed some.  i wasn't sure if mitchell would, but it turned out that he did too. 

right after the island restaurant closed i got a job as a waitress at the "new york city deli" just up the street.  i've told you before that it was a crazy time. there was plenty of wild stuff happening beyond corn beef on rye. david weissman and jono weiss were the people i worked with that i liked the best. through the years i'd run into them, sometimes together, usually at the cafe flore.  david and jono were best friends, young lovers, and it seemed to me, soul mates.  david became a filmmaker, much beloved in san francisco, and jono, an artist... he died of aids in the year 2000...

when the island facebook phenomena happened, i invited david weissman to join the group. he wasn't an islander, but he was pretty close to it. i thought perhaps he could film the reunion...he came to the party as a guest, not a documentarian...he was working on something far more important..."we were here: voices from the aids years in san francisco". and that was what previewed today at the castro theater...  

while mitchell waited on line, frank and i walked up and down castro street. we were reminiscing about our friends who died of aids, and how tramatic those days were.  we remembered the night his boyfriend died.  i was living just over the hill and frank walked over in a kind of altered state.  we just kept talking and walking up and down castro street.  it was a dark and sad night...and a terrible time in the castro...

and here we were 25 years later, walking the same street together.  who would've guessed what would become of our lives. that he'd be happily married and healthy, that i'd be living with his old roommate mitchell, dealing with my own life threatening diagnosis.  then we lightened up a bit...it was a sunny, beautiful day, and we were still here, still friends....still everything...

we met our other peeps and sat down in the 1400 seat, sold out theater.  david weissman and his editor and collaborator, bill weber, came up and thanked the audience for coming, told us that there would be a question and answer period, and that people could join together at a nearby community center after the film, to share their own stories of being there...

it was a great film...each of the interviewees were amazing in themselves. they made it through the storm and were the true life heroes of the times...if you were around during those days, you would know...it was like a war going on, and the young men were dying all around us, all the time.  i saw quite a few pictures of people i knew in the film. without thinking, i would say their name out loud...it seemed like a lot of people did that too. one person in the theater began sobbing pretty loudly, and we all got it...i was glad it was a safe place for him, despite how many people were in the room...

i saw men who reminded me of mo before he died. the thing that made me cry the most was the kindness people showed each other...the shanti hospice worker, the dedicated nurse on the front lines when other people were scared to death to be near the guy with purple marks all over his face and body...there was the artist who went through it all and eventually started "under one roof", the store that raised funds for people with aids, run mostly by volunteers with the disease...he said it was the only time he ever saw a retail situation where the person buying the stuff would truly thank the cashier...

there was the amazing lesbian community.  they made posters just like in war, asking for people to donate blood for "our boys"...and they did...they stepped up in a way that we should never forget ...the community took care of each other, and that was incredibly moving...

after the film, the standing ovation lasted way past the credits. i went down to tell david how proud i feel to know him, and what an incredible film it was.  he documented history in the most beautiful humane way.  

mitchell and i spoke about it on the way home, wondering how it would play to the rest of the country...to people who didn't have any friends or loved ones die of aids...we wondered if you had to be there to really get it...we were there...and just by the grace of something, still, we are here...

the sixties...

i'm amazed that so many of my friends are in their 6th decade...yesterday marilyn joined that crowd. there are a few people in my life that make me want to up my game...marilyn is one of them.  we met 30 years ago as waitresses at the acme cafe.  she described it better..."we weren't just waitressing, we were moving energy".  and that's a pretty good take on the whole thing. marilyn was always aware of what was happening, beyond what met the eyes. 

she's the rare person that people respect right from the get go. she's tall and stands tall...she's been a filmmaker, writer, social worker, and was all about civil rights way before it was hip...plus, she could talk astrology and motown and pop culture with the best of 'em...she and i knew all the words and a lot of the back stories...

there were times, after being with marilyn, that i would replay in my mind things i said or did, and i'd be annoyed at myself for some uncool comment... i was pretty tough on myself in that way...i wanted to be better and do better.  i wanted to live up to her friendship. there were times that i didn't.  i remember wondering if i could ever undo my flaky reputation with marilyn... i was a terrible flake in those days...but i learned something through the years...almost every reputation can be changed for the better, given time and good effort...

we didn't have much contact in the last decade, but every so often, we'd meet again, and catch up pretty quickly.  right before i was going to meet the dalai lama, marilyn and ralph (her tall handsome husband) and i bumped into each other...i was so excited to share what was about to happen...and after i was diagnosed, i remember hoping i'd run into her again.  i wanted to tell her what was happening to me...there was something very important about her knowing... 

for my 40th and 50th birthdays, my graduation, and my "five and alive party", marilyn was on my invite list...when she showed up, i felt happy... last night i was on her list. when her friends went around the room sharing how they felt about her, i wasn't the least bit surprised at what they had to say....what came to mind when it was my turn was that there was one constant through these 30 years...i said, "marilyn makes me want to be a better person"...and that's about the size of it...

.  

the bells...

in 1969, on memorial day weekend, my mother, us five kids, mrs.bell, and her three kids, all piled in to my mother's old chrysler and headed to washington dc. i was 13 years old. mrs. bell's two kids, frances and james, were a few years older than me, and kenny was younger.  eight kids and 2 grownups in one car (before bucket seats)...with very little money between us.

we were going to see the sights and stay at mrs. bell's sister-in-law's house. i sat in the front with the two moms because of my car sickness.  our first stop was maryland for breakfast in one of the diners on the turnpike.  everyone stared at us when we walked in. my mother thought it was just because we had so many kids with us.  i was pretty sure it was because the bells were black and we were white. 

my mother worked at the day care center so that she wouldn't have to pay for my little brother david's childcare. she became friends with mrs.bell, an assistant teacher there...they decided to take a trip together. the husbands weren't the slightest bit interested in coming along.

i never stayed at a black person's house before that. even in fourth grade when my best friend stacy and i wanted to sleep over each other's houses, we weren't allowed...i don't remember exactly what was said, or who told us we couldn't but we knew we couldn't have sleepovers, and we knew it was because we were black and white. 

i can honestly say that my mother didn't seem to notice or care about racial differences...my father, on the other hand, had a whole other vibe about that. today i asked my mother why my father let us go to d.c....she said he was just glad to have a weekend alone.    

the reason i bring this up is that yesterday i got an email from frances, mrs. bell's daughter.  we've had no contact in 40 years, and were never really friends anyway... we just shared something pretty big together...a trip to washington dc during the time of the race riots.  she ran into one of my brothers in town and asked about me.  i responded with a brief hello, and told her that i remembered our trip, and how radical that was, in retrospect.  she wrote me back and said, "we let the south know what it was about - being friends. we had showed them that we didn't care"...

i called my mother today to ask more about the trip.  she reminded me that we went to arlington cemetary to see jfk's grave and got a flat tire right there.  my brother alan (11) and james (17) changed it together.  she told me that we stayed in the projects, and  when we went to the park outside together, no one even batted an eye.  at the time, it was just the white people that seemed to not like what we were doing.  anyway, i feel kind of proud of my mother, because she wasn't an activist, or civil rights person per se...she was a natural. 

really good speech about metastatic breast cancer...

What follows is the talk that Lilla Romeo gave at a press briefing for the 
Global Advocacy Working Group on September 19, 2008. Sponsored by Pfizer, this group of many organizations from a number of countries has been working on an initiative to expand services and research for women with metastatic disease. Lilla works at SHARE and is active in the Metastatic Breast Cancer Network (MBCN).

(addendum-i just read that lilla romeo died in may...)

 Good Morning, 
 If I asked each one of you to hold up a glass of water, I don't think you would have any 
 problem. But if I asked you to hold it up for an hour without putting it down, you might find  that more difficult. What about for a day, a week or a month? It would seem not only  painful but nearly impossible. Now think how a person with metastatic breast cancer feels,  living with a relentless disease that offers no respite. Most of us in this room know someone  who has dealt with, or is dealing with breast cancer. You may have spoken with them as  they've gone through chemotherapy and know how unpleasant it can be. An average  breast cancer patient sits in the chemo  chair 12  times.  I have sat in that same chair over  200 times. But believe it or not, I am one of the  lucky ones. I have been metastatic for 8 ½ 
 years. Current statistics tell us that most  metastatic women will not survive 8 ½ years. 
 Cancer.org lists the survival statistic at 2-3 years saying that only 10% will live for 10  years. 185,000 women will be diagnosed with  breast cancer this year. What many people  don't realize  is that breast cancer does not kill  women, or men  for that matter. What kills  is metastatic breast  cancer and statistics tell us  that metastatic  breast cancer will take the  lives of 40,000 women and 400 men  this  year alone. For all our best intentions, we are  afraid to really know about metastatic  breast cancer. We like to think that it only happens  in rare cases and that it's not going to  happen to us, our friends or anyone in  our family. 

  In fact, 25-30% of all invasive breast cancers become metastatic. I say this not to        frighten you but to underscore the importance of research in the area. According to  Dr.William Gradishar at Northwestern University, Chicago, there are  155,000 women  currently living with metastatic  breast cancer. By 2011 the number is projected  to be  162,000. Doesn't this sound like a big  enough number for all of us to pay attention?  Do  these statistics sound like 'rare cases'? 

 The traditional breast cancer community focuses on the Cure. Believe me, WE are all for  the cure, but our immediate concern is research that will extend lives. Thanks to new  targeted  treatments, men and women with metatatic breast cancer are living longer. Many  of us are able to lead full and productive lives but too many are not and are dying when  they are far too young. 
 We need the entire breast cancer community to join with us to push for life  extending treatments. Metastasis is a frightening word. It's even difficult to say. What's  easy, is seeking comfort in avoidance: "if I don't see it, talk about it or hear it, it won't 
 exist." But it does exist, and we need everyone's help to find a way to live with it. 
 It's the elephant in the room that leads to the  feeling of isolation that so many of  our metastatic women and men experience. Why else would so many feel the need to  keep their condition a secret from friends and family, let alone employers? It is only through  getting it out into the open that the feelings of shame that so many have can  be calmed. 

 Shame? Why on earth should anyone with metastatic disease feel shame? 
 Perhaps it starts with doctors talking about  patients "failing" a drug or a trial, rather than 
 the drug or the trial failing the patient. Perhaps it's about frequent media use 
 of words like "terminal" to describe our disease. Perhaps it is the incessant talk about the  importance of a "positive attitude" or a "strong immune system." But mainly it is the secrecy. 
 If you're old enough to remember what things were  like in the 60's and 70's with regard to  cancer, you'll have a good idea of what I'm talking about. Back then, it was called the "C  word" and whispered, out of the earshot of children or the person dealing with it. No one  ever asked the patient how she was doing; no one wanted to know  the truth. That is where  we are today, forty years later with metastatic disease. 
 MBCN (The Metastatic Breast Cancer Network) is  made up of women and men living with  Stage IV  disease. We have about 900 active members in our  database, but we remain a  small organization. And yet, we have held impressive national and local conferences,  dealing strictly with metastatic disease. So far we have had conferences at Sloan Kettering,  NYU and MD Anderson.  Our original mission was to bring together  doctors and  researchers to tell those of us living with Stage IV disease what was going on in 
 the world of metastatic breast cancer, which treatments were available, which were in the 
 pipeline--the premise being that education is our greatest tool. When the attendees  gathered at the first  conference, the chemistry was undeniable. People were comparing  treatments, talking about side effects and offering each other tips on dealing with them. It  was the first time many of them were able to openly discuss their treatments, the first time  many realized they were not alone in their struggle. The feeling of isolation was temporarily  abated.  Over the years, many of my concerned friends have 
 asked, "So, when will you be finished with your treatment?" or they say, "I've never known 
 anyone on chemo so long, you look fine, are you sure you still need it?" 

 Our conferences have been a place where the heart can sing just looking out at an  audience of people who understand that treatment only ends when it stops 
 working.  Unfortunately conferences only reach a small proportion of the metastatic  community. To help broaden our reach, we are working with SHARE of 
 New York City to train more metastatic women to  take hotline calls, offering comfort    and understanding to those who've received a metastatic diagnosis. 
 So, how do we talk about metastatic disease? Most of you are professional 
 communicators, so you know the power of  words. In this setting, words have a  particularly  profound effect on attitudes. 

 Let me illustrate. A friend told me that she was asked to be part of an advisory questionnaire  for a major breast cancer organization. One of the 
 questions posed was "Are you still in treatment or are you a  survivor?" 

 The world often uses the term 'survivor' as a label for someone who has 'had cancer and  beat  it.' Like a compliment, it gives the impression  that there has been a battle and the  warrior has emerged victorious. It gives the appropriate closure to a very unpleasant  experience and the promise of getting one's life back. It's a badge of honor. 
 But what about those whose battle never ends? How should we talk about "survivorship"  in that setting? What about those of us who can never put down that glass of water? Who  have no respite from treatment? 

 The Sicilians have a wonderful expression for describing how they face the trials and 
 tribulations of life: "Ci Difendiamo," we defend ourselves. Perhaps that expresses our  situation best. 
 Another emotionally charged expression in this setting is "chronic disease." How often do  we hear that metastatic breast cancer has become a chronic disease? How many chronic  diseases do you know of with a life expectancy of 2 to 3 years? 

 Believe me, making it a chronic disease would give our community incredible happiness.  And yet, we are far from it.  
 Yes, there are the wonderful cases where someone  "Dances with Ned" NED being "no  evidence of  disease." But usually the doctor prefaces the statement by telling the patient  that NED doesn't mean the cancer is gone, it means it's lying  dormant. The time bomb is  waiting to explode. But what we all wouldn't give for a little twirl around the dance floor  with Ned!!! 

 As October approaches and the spotlight will be on the pink ribbons (another hot button  but I'll save that for another time) we will all be reading articles in the media and hearing 
 breaking news on television about how close we are to finding the cure. There'll be the 
 heartfelt stories about women dealing with chemo while working and raising children,  about celebrities - actors, newscasters - who've had  their brush with breast cancer and  moved on. There will be emotional tales of support given by friends and family through a  difficult time, maybe even a few friends donating their hair in support. 
 And that's all wonderful feel good stuff, but there will be very little said about women  dying from metastatic breast cancer or even living with it. 

 MBCN has made it a priority to bring awareness to those living with advanced breast  cancer in the month of October. Last year 4 cities declared 
 October 13th as Metastatic Breast Cancer Awareness Day. This year we can already count  18 cities and 7 states that have issued the same proclamation. It has even been recognized  by the Department of Health and Human Services. We are hoping this begins to ease some  of the isolation felt by our community while the country is awash in pink. 

 The available data on metastatic breast cancer is virtually non existent. Pfizer is initiating    a Global Metastatic Breast Cancer Survey to better understand the gaps in resources,  information and psychosocial support experienced by the Metastatic community. A very  much needed piece to the puzzle.  
 But in the end, it all comes down to supporting research that helps extend lives. 
 A few weeks ago, my husband and I went for a walk  in Central Park. In spite of the heat,    there were thousands of men and women "Running for the Cure." It struck me that the  metastatic community isn't so much running for the Cure as racing for 
 survival! 

 Thank you. 
 Lilla Romeo 
 Metastatic Breast Cancer Network 

(if)...

in just a couple of weeks my state disability ends, and i'll start receiving social security. the good thing about social security is i can get it for the rest of my life...i like the security of that...the bad thing is that it pays less than half of what my state disability paid...and that might be a problem...for months i've been wracking my brain trying to figure out how i'm gonna make ends meet in my so called future. 

ssi has a trial work program where you can earn a certain amount of money, so that's the only plan i could come up with...going back to work.  i pitched my consulting ideas to the agency. and the agency generously went for it...the thing is that i don't know if i'll be well enough to follow through. if i can't, i won't get paid and i'm back to square one...i tell myself that if i'm not well enough, the bills won't be my biggest issue...but i worry anyway. 

negotiating for the future is very weird.  i feel like i have to wrap every statement and desire in "if"...

another day, another meeting...

i was trying to talk to mitchell about the calendar, but he wasn't listening...then he called me into the room saying that he needed to discuss the dress code for the business...he told me it would depend on job classification to determine the appropriate turban to wear...what a nut...when i took his picture, and threatened to put it in the blog, all he said was, "why did it come out so fuzzy"...and then..."meeting adjourned"...

 belly distention purely for effect...