Home at last. Delta has balls, Delta airlines was the only airline flying into my local airport Tuesday night. We left Atlanta at about 9 or 10 p.m. and the flight was seamless. We flew in low over the Newport Bridge and travelled the rest of the way, as low as if we were about to land, it was spectacular. The air was cystal clear with water shooting under the wings over a winter wonderland that looked right out of a sears catalogue. The scene below looked entirely unreal, like a holiday village display with styrofoam snow and toothpick trees, the little lit up houses looked like you could pick them up and rearrange them at will. We touched down and had a brief skiddy moment and then the passengers erupted in applause. That view was worth being stranded.
We deplaned into a deserted airport and many of us made a mad dash to the cab stand. Two taxi’s, about 15 tired people, not the best equation. It cracks me up the chaos people will bear without anyone taking charge and I wanted to get home so I asked everyone where they were going, grabbed a driver and said I have a route for you, he’s going to A which is near B, I’m C and then she is D. “Sounds good” and off we went, and everyone was relieved when I suggested we each give the driver $25 and he’d wind up with a good tip, people don't self organize, what's the deal with that? Everyone was happy, except the poor dude who wanted to go to Newport, he’s probably still at the airport. I have never seen anyone as tired as the Pawtucket woman returning from a visit to Nigeria.
My sidewalk had been plowed thanks to the benevolent dentist with a fondness for power tools and community service to who my gratitude is unquantifiable. That left the stairs up to my house, the driver and I both looked at them, looked at each other, and it was clear I was on my own with the worlds heaviest suitcase (containing not a single pair of clean underwear). My suitcase was so heavy it won an award, that’s right, the airline ziptied a badge on it declaring it “HEAVY”, I’m just grateful they didn’t ziptie one of those to me, dessert buffets are dangerous, as are the aforementioned, unlimited coco locos, the last of which I had at 11a.m. on the drive to the airport in Punta Cana. The other award I could have won was the dope-who-can’t-ever-figure-out-the-passport-machine. It takes people about 45 seconds, I just stare at it shoving my passport anyplace I can think of until someone comes up and helps me, I’m 3 for 3 with this routine.
I must have been a sight crawling up my front steps through the snow, dragging a suitcase at 1 a.m. and heaving myself in the front door. The cats were happy to see me, until they realized I’d not brought food with me. The catfood container was empty, great to be home. I will not mention who was feeding my cats, or should I say, my children’s cats... that was a hint.
I have never needed a vacation so much in my life, and it worked, I feel so much better. Reenergized, revitalized and looking forward to my next trip, and the time in between.
Thursday, January 29, 2015
Monday, January 26, 2015
Book Proposal
Last night I broke my solitude and started posting on Facebook, hours and hours on the phone left me frustrated enough to reach out to that strange water cooler we call social media. I can get really down on Facebook and have to reign in my own use as I vacillate between using it only for business and then getting lured into a personal thread or venting like a child about something stupid. I have “friended” a lot of people lately, based on this newfound need for “networking” which to me is akin to my upcoming colonoscopy, unpleasant, but necessary.
In response to the twice yearly thread suggesting I write a book, I will stop with the “aw shucks” and reveal my real thoughts on that. Firstly, not only that anyone in the whole wide world would suggest such a thing, but folks that I know to be savvy and intelligent would suggest such a thing floors me, yes, blows my mind. It is the biggest, greatest most besty best compliment I could receive. I feel both worthy and unworthy, because I vacillate, it’s what I do. Because I’m a relentless self-analyzer and self doubter, I'm a professional, I have a graduate degree in self doubt (oh, fine, it's not from Harvard). I’ve been thinking about this writing thing, this blogging thing, this Facebook posting thing and trying to figure it out because I’m always trying to figure myself out hoping it will lead me down the path to success (my own version of it anyway), and eternal happiness, which for me might be freedom from angst, self-doubt and insecurity and that nagging loneliness of someone who knows they're not going to have a soul mate. I've realized that for decades I’ve been living in my head, narrating my life as I go, trying to make sense of things, and if I’m going to narrate, I like it to be coherent and have rhythm and flow, even if it’s just for me, I like to entertain myself... so I think in essays, or book chapters, if I may be so bold. I am only realizing this now.
I started the blog for functional purposes. I had a situation on my hands that I had no choice but to share with people and it was too arduous to initiate so many individual conversations and endure the same questions over and over, and the particulars of my diagnosis left not a lot of free time. For people in similar situations, social media is truly a godsend. I started the blog to be functional and quite quickly it became a labor of love and then a necessity, an addiction, but the good kind, like exercise, although I’ve yet to experience that glorious addiction. All I do when I write is type out exactly what I’m thinking at the time, it’s prewritten, it’s in my head, it’s how I think, (I always wonder how other people think or if they’re thinking, I do a quick reread for typos and repetition, a tiny bit of crafting happens and then post, pong, it’s out of my life and i don’t have to think about it again. Self therapy, and it’s free. I also think that a lot of the minutia I write about is the daily chatter that one would have with a spouse over dinner or while getting ready for bed, or in snippets throughout the day. But i don’t have a partner to do that with and despite living with someone for 25 years our conversations from near day one consisted of me talking and him looking at me like a deer in the headlights and then getting up and leaving. There wasn’t any back and forth, I yearned for back and forth, I thought back and forth was a big thing to want, something that maybe I made up. It took me years, years and decades to realize that I had no problem with this back and forth thing we call conversation with anyone else, although you could now toss my 19-year-old son onto that list of those with whom conversation is difficult if not impossible. I thought I was needy or delusional or had crazy, unrealistically high standards. All I wanted was to be able to have a little chit chat at the end of the day, but after trying all manner of crazy approaches to that, with my spouse, I gave up and I continued living in my head, and trying to figure out among other things, why my partner and I didn’t converse among many other things we didn’t do. I didn’t grow up with family I could talk to, I didn’t have any adult I could talk to and then I spent a quarter of a century, the better part of my life with a man I couldn’t talk to, so I guess I’ve learned how to live in my head, when not jabbering on incessantly to anyone who will listen. So writing for me is just jotting down what’s in my head that I don’t have anyone to talk with about because while I have friends that love me, I don’t think they want to hear from me nine times a day, and add to that, that while i crave, absolutely crave community, I think I am by nature, a bit of a lone wolf. I like to be alone, I need to be alone a decent amount of time, so there it is. I’m not sure what at this point, but there it is because if I say that, and nothing is there, you’ll think you’re missing something, you’re just not smart enough.
Anyone who knows my yappity-yap-yap self will find it hard to believe that I was terribly shy into my early twenties. An angsty, angry, hot mess of chaos. At one point in Tina Fey’s book she recounts the one time someone called her the C word and she stood up and yelled something to the effect of -- hey!!! my parents loved me, I’m not one of those broken girls who will let you get away with that shit... and she never had a problem in that writers room again. I was that broken girl, my parents, they might have loved me, but it was in a really, really narcissistic and twisted way. I grew up in a “perfect” middle class home with rules, lots of rules and an alcoholic, dangerously narcissistic father who couldn’t understand why his greatness wasn’t acknowledged and revered. He was, by IQ test standards and number of books read, quite brilliant albeit with not even a high school diploma. He lorded how smart, how clever he was over everyone everywhere until audiences were universally vomiting in their own mouths, or conversely, telling him how fabulous he was and he'd say "see, see, how lucky you are to have me as your father". He always showed me how what I was doing was wrong and how he could do it better, down to the simplest arts and crafts project and then would become angry that I didn’t thank him for the privilege. I was always told how lucky I was, I never felt lucky, and I was always, alway, always told that there was something wrong with me, so it’s just ingrained in me that there’s something wrong with me, and I never realized that that’s the thing that was wrong with me. You can’t fix it until you find out what it is. My father needed an excess of love and attention and so he sought it wherever he could, and I lived with the guy. I was the thin, comely one in a fat family and my father would literally lick his lips when seeing me in a youthful, innocent bikini or tight jeans (twas the early 80s). His kisses were too long and too wet, his hands strayed, he groped and made icky gestures and underhanded comments. And then he would sob, he would sob, “why don’t my children love me?”, “I work so hard, I give and give”. I was just a kid, all I knew was that he skeeved me out and I couldn’t stand being around him and most especially, having to touch him. His name was Will, I called him Will the Weeper, but only in my head, because that’s where I lived, in my head... still do to so many degrees. The parental “give me a hug” which today gives me such joy with my children, was not a source of joy for me as child. I learned how to be invisible, I learned how to hide and dodge. Our bathroom was at the top of the 2nd floor stairs which led straight down into the living room. If I had to use the bathroom in the middle of the night I would sneak in as quietly as I could because at 2a.m. my father was reliably sitting in just his underwear on the couch with a bottle of gin between his legs, dozing off with a book in his lap and I didn’t want to be noticed.
I was told over and over what a disappointment I was to my father, that I was a “bad” daughter, I didn’t “love” him and he was right, I didn’t have a clue what love was. He felt both ownership and a perverted lust towards me because I’d been sown from his great loins. So that’s what I learned growing up, but at that point there weren’t essays in my head, just a jumbled mess of “I don’t like these people and I’ve got to get out of here”. In elementary school I started counting down the years until I’d be 18 and could get a job and my own apartment, I figured I’d live in a city, because driving a car looked complicated, D N R 1 2 3 how would I ever know what those meant? My father was a travelling salesman of sorts and quite successful and mercifully, he was away a lot. Now here’s the scary part, he was the safer parent. My mother was and is the angriest person I know and most self-righteous, lacking any ability to empathize and unclear on just about every concept. If she ran someone over with her car she wouldn’t feel badly, wouldn't lose a minute of sleep, she’d say they shouldn’t have been that close to the road. I’d feel like its my fault if my kid has a bad day at school. I have an all fault outlook, I'm constantly apologizing for nothing and asking people if they're ok because I figure I must have done something wrong. I believe my mother is a highly functioning sociopath, and, she was living with that guy, so you can imagine. She married him after knowing him for two weeks because he was flashy and drove a fancy car and her biological clock was ticking and she thought she hit the jackpot... not, it was a carefully cultivated facade. My mother had kids so she could scoop up all that unconditional love, but to this day, disappointed in her relationships with her three kids and two grandkids, and most of her friends, she hasn’t figured out that you have to give to get, and she absolutely can’t grasp the theory of the common denominator. Neither of my parents had a clue regarding unconditional love, oh, there were conditions and conditions and conditions. In fact, they were quite clear about the conditions. The only advice I got about sex at a very non precocious eleven, was “if you ever get knocked up, get an abortion and make damned sure I don’t find out about it.” I think this was more directed towards my older sister, but we always got lumped together as “the girls”. I got my period early (for those days) at eleven and seeing my abject fear of tampons and upon request of pads my mother barked that I was being ridiculous. When I left home for college, she told me not to come back until I was a different person, because she didn't like who I was, "think about that". Yeah, I lasted six months in college, I wasn't even sure what college was for, so I got a job as a cocktail waitress and in a record store.
I was often told that as her daughter, I was supposed to be close to her, “so tell me who you are, tell me about yourself”. Can that question be satisfactorily answered? And is this how one gets to know their children or should they perhaps take a cigarette break and observe. She insisted that I pursue her interests, so while I wanted to take dance and go to camp and do crafty art classes I was only allowed ceramics and was conscripted into figure skating because my mother loves ceramics and figure skating and wanted to display and brag about my fine pottery and sit with the skating moms. Well, for a kid with sensory issues, clay drying on my hands was a torture, a weekly torture, I begged and begged for years to do painting or anything other than ceramics, but ceramics it was and then, instead of throwing bowls which i just couldn’t seem to get the hang of, I made clay monsters and creatures. I drew monsters and creatures too, the ones of my nightmares. Yeah, I had nightmares and a lot of trouble falling and staying asleep. Melatonin has brought peace and tranquility to this life long insomniac. So in this manicured, middle class house there were 3 fucked up kids each coping in their own ways, each destined for drug and behavioral issues, but separately, very separately and I was the outlier, I was the sensitive one. My house wasn’t a good place to be when you’re sensitive and introspective. But as a kid and young adult and even now, it’s hard to shake your formative years being told you’re doing it all wrong, you’re doing everything all wrong, you’re not fulfilling our needs and you’re bad, bad, bad. My sister and brother seemed to prefer negative attention over no attention, which I think is common, I’ll take no attention any day! I still can’t deal with conflict.
Both parents really hated that I was quiet and awkward and they assumed that I was that way intentionally to torture them, that it was a conscious, defiant decision because they were supposed to have precocious children that put on plays for their dinner party guest's entertainment and dazzle them with their conversational skills. My modus operandi at dinner parties when I was supposed to be showing off, god knows what, was to declare a stomach ache and go to my room. I spent a lot of time in my room, mostly voluntarily and sometimes being dragged by my long hair which I loved until i was dragged by same hair to get it chopped off because my mother needed me to have a Dorothy Hamill haircut. No amount of begging, pleading, gravelling and sobbing dissuaded my mother from anything and she was bigger than me and stonger than me and had a temper and a penchant for loud yelling and name calling. Often times, I think my mother would prefer to see me fail and be right than to be wrong and see me succeed. I once showed a therapist a letter she’d written to me spelling out some of my deficiencies as a daughter and the therapist was aghast, I needed the reality check. She advised me to break it off completely, that my mother was poison, but I’m a softie, I would have loved to, but I just couldn’t do it. Sometimes my mother would “punish” me by not speaking to me for months or years and I always loved those times.
I used to try, I really did... I’d sit in silent car rides with her knowing she was getting angrier and angrier and I’d say to myself “talk, say something, say something.” But I honestly and truly didn’t know what to say... I just had nothing to say and if I did, well I’d be too damned scared to say it. What I remember most about childhood was a searing stomach ache and running, running, after other kids trying to keep up and barely doing so. I used to look at people talking, my sister talking to adults at Thanksgiving and I just couldn’t imagine what they were talking about. What did people talk about?
About 15 years ago when my oldest son was a toddler, my mother was visiting. She didn’t meet him, her first grandson until he was a year old because she was mad at me and my mother is all or nothing. One fight with a best friend and she never spoke to them again and from that stems my fear of loss and so what happens? I keep losing things, I’ve lost love (who hasn't?), I’ve lost my health, I’ve lost a child, I’ve lost friends, I’ve survived loss, but I still fear it. Maybe now I fear it for different reasons, I’ve lost so much, I just can’t handle any more although I do realize that this is first world loss and a first world life. If I advocate for myself, if I make one wrong move, I think my best friends will never speak to me again, it’s so ingrained. I work on this daily, consciously, now that I recognize it, but it’s a hard way to live.
Anyway, my mother was talking about those silent car rides to ice skating lessons and by the way, don’t ever ask me if I’m watching the skating at the winter olympics, I’m not, I’m not, I’m not. She told me that I was silent to deliberately hurt her feelings. I explained that while I know I’ve hurt her many times, I have never done it deliberately. That I don’t like to see anyone in pain, I’m overly empathetic and I can loathe someone, but If I see them cry, I’ll feel terrible and I’d give them my shoes to make them feel better (although if you’ve seen my shoes, you’d know this tactic would likely fail). I feel sorry for everyone in jail, especially death row no matter what horrible thing they did, I can’t handle suffering and while I am a flawed, awkward clod, I don’t do things on purpose to hurt people, I’m not a schemer, or a game player and I explained my inability to open my mouth, the pressure I felt to do so, and my absolute, frozen terrified inability. And she said no, that wasn’t true, I was intentionally trying to hurt her feelings. Ah, because that’s what she would do. We don’t have a lot in common. OK, we have nothing in common and I just don’t relate to this woman who is my mother, I always thought that was due to shortcomings and abnormalities of my own, but I have now watched her systematically alienate her only grandchildren who are the axis on which the earth spins and she will receive no gentle nudges of assistance from me on how to relate to them. Nope, she knows best despite it never, ever working.
I always felt guilty about how uncomfortable was around my father, as in physically ill, fetal position, nauseous around him uncomfortable until I saw him with my 2 year old son, the love of my life. It’s incredible what you can see as a third party, that you can’t see when you are 6 or 10 or 12 or even 20. It’s incredible what you can see when you’re a mama who really does love her baby unconditionally. My father asked my sweet, innocent, happy, jolly, lighthearted son if he wanted a present. “yes”, “it’s in my pocket (front pocket, deep pocket, saggy old guy shorts)”, “give it to me”, “reach in and get it”, “I don’t want too, please can I have it?.” And I could see the look on his face change. “If you want the present, just reach into my pocket and you can have it.” “I don’t want it, it’s ok”. And his face changed more, as did my fathers. “you don’t want the present I brought just for you? do you know how that makes me feel? don’t you love me? I love you more than anything in the whole wide world and I brought you a present, just reach into my pocket... unless you don’t love me, do you love me or not?
Bam, I got it, my whole life flashed before my eyes. No, I didn’t make things up as I’d always been told. I wasn’t a bad “daughter” as I’d always been told, I wasn’t a bunch of other invectives either and what the fuck, who tells their kid they’re a prude because they don’t want to take their shirt off while doing backyard chores? What decent man uses that word in a derogatory sense or any sense towards their daughter? Holy shit! I saw the look on that sweet boys face and that was the look on my face for so, so long and I was not ever, ever gonna see that look on that boys face again, ever, because THAT is what mom’s do.
I did continue to see my father and his just as crazy, even more narcissistic 3rd wife for a few more years, I still fell into feeling guilty and their antics would have been amusing, but only at a further distance, which perhaps I now have. Visits were highly supervised and controlled and I would jump on them immediately for anything out of line. It was getting harder and harder as they were pushing for an overnight visit that was never, ever going to happen, and as my father got more verbally abusive, I started throwing it right back at him. They started manipulating the kid mercilessly, telling him all the things they would buy him if his mommy would let him come visit... all the fun his mommy was depriving him of, I would hear these things whispered loudly and also my son saying “no thank you”. Later he would ask me if I was going to make him go and I reassured him, of course not. And I would see another face that looked familiar, when my father would bring a massive dollar store erector set and expect that my four year old would have the attention span to focus on the ill fitted pieces for 6 hours straight “what’s wrong with you? you don’t know how to use a screwdriver? don’t your parents teach you anything?” So when Jonah was a few months old, and the wife picked a fight with me while I was driving a car with my kids in the back, her face turning all shades of red and purple, shrieking every vulgar name she knew at me, I had had enough. And this long suffering citizen launched into the most cathartic series of fuck you’s she has ever uttered. Once I started, I couldn’t stop, I have never screamed at anyone to go fuck themselves like that to this day and it was glorious. Afterwards my father told me I should apologize to her, but that she need not apologize to me because everything she had said about me was true, I was a cold hearted bitch. And that was the last time I saw either of them.
G was very upset, crying, sobbing, shaken, he’d never heard yelling like that and he thought that nana M had been very mean to me. It was a super hot summer day and also monroe dairy delivery day, so we hunkered down in my bedroom with the air conditioner on and ate the whole gallon of melty ice cream that I’d ordered that week with the milk. In this moment, I felt like a” grown up” for the first time, I felt free and that I finally had a family of my own and I just was not going to expose them or myself to this brand of crazy any more, despite the obligations I’d be preached.
I have rarely been clearer in my mind on anything than that being the right thing to do, but I knew I had to live with it, had to have the moral high ground, so that xmas, I sent a card with a picture of the kids and wrote “thought you would like to know the kids are happy and healthy”. I knew my father and his wife well enough to know that he wouldn’t respond, the only thing they would respond to was my begging and gravelling for forgiveness and then paying tribute to their greatness and superiority, apologizing for my dreadfullness and inability to see this sooner, to let them know I repented of my cold-hearted bitch ways, I was ready to learn from them. Yeah, not happening. I also know that his wife was exactly the person who would intercept that card and toss it in the trash. Either way, I didn’t hear from him and I was so relieved. Now i had the moral high ground and figured I would go to his funeral some day, and gain closure with a very clear conscious.
I was in the second of three families albeit the third was filled with steps that he worshipped and adored, he was the much youngest of five and had my sibs and I late and so how long could he live, he’d already outlived his whole family by decades... well, it turns out, a long freaking time, that lifelong, obese alcoholic lived until the ripe old age of 96 and was bopping around Manhattan, skirt chasing and going to the theater, living the life until the month before his organs just gave out.
I was in New Hampshire visiting friends, having a lovely walk around a reservoir when I got the call last summer. I felt nothing, absolutely nothing. On the car ride home later that day I started reliving stuff I’d not thought about in years, the only time I thought about him was when on occasion I’d imagine what it would be like if i were expecting a visit and as I’d start to clench up and feel queasy, I’d suddenly get so happy that I just didn’t have that in my life any more and why, oh why, did I endure it for so long? Training and guilt, powerful tools. People say, oh everyone has family drama, everyone has crazy relatives, this doesn’t help the ones of us with truly, truly toxic families of origin.
Thoughts of his death faded quickly as I got back to my house to find it completely destroyed by my now 19 year old son and his fellow camp counselors who were spending the summer becoming experts in finding party houses, and equally non adept at covering their tracks, but that is surely another story.
I didn’t go to the funeral, felt no need whatsoever and if I feel anything at all, it’s slight relief he’s off the planet and no one on earth, especially my brother has to deal with him ever again. That guy was a piece of work, a harcore seriously, one of a kind, fucked up sanctimonious piece of work.
I have so many stories of my father and his wife, both of whom fell out of a bad woody allen movie, that yeah, it could fill a book, ok, i admit it, I’ve had two therapists that I could never afford to spend extended time with tell me I could write a book about these people, (who could make them up?) that well, maybe I’ll write a book. If I were tragic, it would be tragic, but I’m not tragic and there really are stories, because until you’re met real narcissists, you don’t know nothin’. She fancied herself an “actress” because she took an acting class for 50 years and had once been in an off, off, off broadway play, she did her makeup every day like she was about to go on stage, if I were a small child I would be frightened if she came at me too fast. She had strong thoughts about make up. “Kim, you could be pretty, if you’d just try some makeup.” The talk of her acting and her art was nonstop and once, she wrote a script for a t.v. show, based on herself, that she made everyone read. She literally put into words the way she saw and often described herself... the nicest, most big hearted person who loves, loves, loves everyone, “did you know that not only have I never said anything negative about anyone ever, I’ve never even thought it, I’m only able to love, that’s just the way I am, my son bob, he’s brilliant, brilliant, one of the most brilliant people in the country and it’s like his wife doesn’t even know she’s fat, you’d think she’d want to dress better when her husband is such a handsome man. Although she is smart, she is almost as smart as him, but I think the kids really miss out, it’s like she doesn’t know she has kids, and how can you take care of kids when you don’t even care about taking care of yourself?”
Bobs wife was the salt of the earth. I only met them a few times, but they seemed like a great couple and a great family with two lovely welll adjusted daughters that were thriving. She was kind, warm and smart, easy going and funny, and had a very rewarding career in technology while being a most excellent involved mother. Like many of us, she coulda lost a few, but she was a happy person that had created a happy family with this lucky man. So there may in fact be a book in there, somewhere, someday. I’ve always thought, oh, it’s just too long a story, but I guess that’s what books are for. And then there are Marilyn’s thoughts on where homosexuals come from.
In the back of my mind I’ve known that if I ever really did write a book, this is where I’d have to go. Because that is the story, the theme, the thread. It’s how you go from fucked up childhood, to fucked up twenties, to fucked up marriage, to fucked up pregnancies, to fucked up divorce and fucked up cancer and all sorts of fucked up things in between and find happiness in the process. How it takes some of us 50 years to get to where some people are emotionally in their twenties and where many people never get. Happy. At peace. Mistresses of their domain. How you wander along aimlessly with very little in your corner, no tethering support system of family or extended family and somehow you build a life. A quiet, peaceful life. How you become a poorly dressed, frumpy warrior princess at 51 with no boobs leading the way, shining light in the darkness. How you make peace with not having things you really wish you’d had, real parents, cousins, family picnics, family traditions and how while you tried to create those things by getting married and having babies it didn’t quite work out that way. You don’t have what you envy in some of the families around you, but you made it, you made it all by yourself and it’s beautiful and you don’t take a blessed thing for granted. It’s about that. It’s about not, not, not ever being a victim or making excuses, sorry victim/excuse loving culture. It’s about the ability we have to fix ourselves, it’s a choice, it’s our responsibility as human beings to grow and evolve and learn and change, and anyone with half a brain can do it (but you need at least half) It’s about laughing, it’s about ridiculous things, it’s about tenacity because is there really any other choice? It’s about making yourself do scary, scary things ike speaking out loud and then, after decades, expecting someone to listen, and then talking to strangers and before you know it you’re stranded in the dominican republic typing in an outdoor shaded lounge on a warm but not hot day listening to frank sinatra and having a cup of tea because you’re body just can’t, can not handle another coco loco.
And it’s about people, the awfulness and beauty of people and how unexpected people can touch you in unexpected ways at unexpected times. So this little essay is dedicated to Donna Golden and Anastasia Tompkins. Neither of which is my BFF, they are casual friends, esteemed acquaintances that because of that horrible/beautiful thing called FaceBook I stay in casual contact with, but they have chosen to read all of my posts and repeatedly say “book, book, book”, they have given me a much needed dose of confidence and encouragement so consistently since I started the blog. What I know about them is that they are smart, discriminating, very different women and I’m going to choose to trust them. I choose to stop or at least try to stop listening to that voice in my head that says, you are average at best, what do YOU have to say? you’re ok, you’re a little funny, a little interesting, but mostly a neurotic, insecure nutball (not an actual ball of nuts, i’m not that crunchy), I’m going to try to drown out that voice with Donna and Stasia’s voices. And I’m going to follow my bliss. I really fucking love to write. So fuck it, I’m a narcissist, I’m writing about myself, my observations, my perceptions. Read it or don’t. I’m a bad ass scuba diver, I can do what I want. Thank you ladies. And my BFFs, you know who you are, you are my family. But seriously, who’s picking me up at the airport?
In response to the twice yearly thread suggesting I write a book, I will stop with the “aw shucks” and reveal my real thoughts on that. Firstly, not only that anyone in the whole wide world would suggest such a thing, but folks that I know to be savvy and intelligent would suggest such a thing floors me, yes, blows my mind. It is the biggest, greatest most besty best compliment I could receive. I feel both worthy and unworthy, because I vacillate, it’s what I do. Because I’m a relentless self-analyzer and self doubter, I'm a professional, I have a graduate degree in self doubt (oh, fine, it's not from Harvard). I’ve been thinking about this writing thing, this blogging thing, this Facebook posting thing and trying to figure it out because I’m always trying to figure myself out hoping it will lead me down the path to success (my own version of it anyway), and eternal happiness, which for me might be freedom from angst, self-doubt and insecurity and that nagging loneliness of someone who knows they're not going to have a soul mate. I've realized that for decades I’ve been living in my head, narrating my life as I go, trying to make sense of things, and if I’m going to narrate, I like it to be coherent and have rhythm and flow, even if it’s just for me, I like to entertain myself... so I think in essays, or book chapters, if I may be so bold. I am only realizing this now.
I started the blog for functional purposes. I had a situation on my hands that I had no choice but to share with people and it was too arduous to initiate so many individual conversations and endure the same questions over and over, and the particulars of my diagnosis left not a lot of free time. For people in similar situations, social media is truly a godsend. I started the blog to be functional and quite quickly it became a labor of love and then a necessity, an addiction, but the good kind, like exercise, although I’ve yet to experience that glorious addiction. All I do when I write is type out exactly what I’m thinking at the time, it’s prewritten, it’s in my head, it’s how I think, (I always wonder how other people think or if they’re thinking, I do a quick reread for typos and repetition, a tiny bit of crafting happens and then post, pong, it’s out of my life and i don’t have to think about it again. Self therapy, and it’s free. I also think that a lot of the minutia I write about is the daily chatter that one would have with a spouse over dinner or while getting ready for bed, or in snippets throughout the day. But i don’t have a partner to do that with and despite living with someone for 25 years our conversations from near day one consisted of me talking and him looking at me like a deer in the headlights and then getting up and leaving. There wasn’t any back and forth, I yearned for back and forth, I thought back and forth was a big thing to want, something that maybe I made up. It took me years, years and decades to realize that I had no problem with this back and forth thing we call conversation with anyone else, although you could now toss my 19-year-old son onto that list of those with whom conversation is difficult if not impossible. I thought I was needy or delusional or had crazy, unrealistically high standards. All I wanted was to be able to have a little chit chat at the end of the day, but after trying all manner of crazy approaches to that, with my spouse, I gave up and I continued living in my head, and trying to figure out among other things, why my partner and I didn’t converse among many other things we didn’t do. I didn’t grow up with family I could talk to, I didn’t have any adult I could talk to and then I spent a quarter of a century, the better part of my life with a man I couldn’t talk to, so I guess I’ve learned how to live in my head, when not jabbering on incessantly to anyone who will listen. So writing for me is just jotting down what’s in my head that I don’t have anyone to talk with about because while I have friends that love me, I don’t think they want to hear from me nine times a day, and add to that, that while i crave, absolutely crave community, I think I am by nature, a bit of a lone wolf. I like to be alone, I need to be alone a decent amount of time, so there it is. I’m not sure what at this point, but there it is because if I say that, and nothing is there, you’ll think you’re missing something, you’re just not smart enough.
Anyone who knows my yappity-yap-yap self will find it hard to believe that I was terribly shy into my early twenties. An angsty, angry, hot mess of chaos. At one point in Tina Fey’s book she recounts the one time someone called her the C word and she stood up and yelled something to the effect of -- hey!!! my parents loved me, I’m not one of those broken girls who will let you get away with that shit... and she never had a problem in that writers room again. I was that broken girl, my parents, they might have loved me, but it was in a really, really narcissistic and twisted way. I grew up in a “perfect” middle class home with rules, lots of rules and an alcoholic, dangerously narcissistic father who couldn’t understand why his greatness wasn’t acknowledged and revered. He was, by IQ test standards and number of books read, quite brilliant albeit with not even a high school diploma. He lorded how smart, how clever he was over everyone everywhere until audiences were universally vomiting in their own mouths, or conversely, telling him how fabulous he was and he'd say "see, see, how lucky you are to have me as your father". He always showed me how what I was doing was wrong and how he could do it better, down to the simplest arts and crafts project and then would become angry that I didn’t thank him for the privilege. I was always told how lucky I was, I never felt lucky, and I was always, alway, always told that there was something wrong with me, so it’s just ingrained in me that there’s something wrong with me, and I never realized that that’s the thing that was wrong with me. You can’t fix it until you find out what it is. My father needed an excess of love and attention and so he sought it wherever he could, and I lived with the guy. I was the thin, comely one in a fat family and my father would literally lick his lips when seeing me in a youthful, innocent bikini or tight jeans (twas the early 80s). His kisses were too long and too wet, his hands strayed, he groped and made icky gestures and underhanded comments. And then he would sob, he would sob, “why don’t my children love me?”, “I work so hard, I give and give”. I was just a kid, all I knew was that he skeeved me out and I couldn’t stand being around him and most especially, having to touch him. His name was Will, I called him Will the Weeper, but only in my head, because that’s where I lived, in my head... still do to so many degrees. The parental “give me a hug” which today gives me such joy with my children, was not a source of joy for me as child. I learned how to be invisible, I learned how to hide and dodge. Our bathroom was at the top of the 2nd floor stairs which led straight down into the living room. If I had to use the bathroom in the middle of the night I would sneak in as quietly as I could because at 2a.m. my father was reliably sitting in just his underwear on the couch with a bottle of gin between his legs, dozing off with a book in his lap and I didn’t want to be noticed.
I was told over and over what a disappointment I was to my father, that I was a “bad” daughter, I didn’t “love” him and he was right, I didn’t have a clue what love was. He felt both ownership and a perverted lust towards me because I’d been sown from his great loins. So that’s what I learned growing up, but at that point there weren’t essays in my head, just a jumbled mess of “I don’t like these people and I’ve got to get out of here”. In elementary school I started counting down the years until I’d be 18 and could get a job and my own apartment, I figured I’d live in a city, because driving a car looked complicated, D N R 1 2 3 how would I ever know what those meant? My father was a travelling salesman of sorts and quite successful and mercifully, he was away a lot. Now here’s the scary part, he was the safer parent. My mother was and is the angriest person I know and most self-righteous, lacking any ability to empathize and unclear on just about every concept. If she ran someone over with her car she wouldn’t feel badly, wouldn't lose a minute of sleep, she’d say they shouldn’t have been that close to the road. I’d feel like its my fault if my kid has a bad day at school. I have an all fault outlook, I'm constantly apologizing for nothing and asking people if they're ok because I figure I must have done something wrong. I believe my mother is a highly functioning sociopath, and, she was living with that guy, so you can imagine. She married him after knowing him for two weeks because he was flashy and drove a fancy car and her biological clock was ticking and she thought she hit the jackpot... not, it was a carefully cultivated facade. My mother had kids so she could scoop up all that unconditional love, but to this day, disappointed in her relationships with her three kids and two grandkids, and most of her friends, she hasn’t figured out that you have to give to get, and she absolutely can’t grasp the theory of the common denominator. Neither of my parents had a clue regarding unconditional love, oh, there were conditions and conditions and conditions. In fact, they were quite clear about the conditions. The only advice I got about sex at a very non precocious eleven, was “if you ever get knocked up, get an abortion and make damned sure I don’t find out about it.” I think this was more directed towards my older sister, but we always got lumped together as “the girls”. I got my period early (for those days) at eleven and seeing my abject fear of tampons and upon request of pads my mother barked that I was being ridiculous. When I left home for college, she told me not to come back until I was a different person, because she didn't like who I was, "think about that". Yeah, I lasted six months in college, I wasn't even sure what college was for, so I got a job as a cocktail waitress and in a record store.
I was often told that as her daughter, I was supposed to be close to her, “so tell me who you are, tell me about yourself”. Can that question be satisfactorily answered? And is this how one gets to know their children or should they perhaps take a cigarette break and observe. She insisted that I pursue her interests, so while I wanted to take dance and go to camp and do crafty art classes I was only allowed ceramics and was conscripted into figure skating because my mother loves ceramics and figure skating and wanted to display and brag about my fine pottery and sit with the skating moms. Well, for a kid with sensory issues, clay drying on my hands was a torture, a weekly torture, I begged and begged for years to do painting or anything other than ceramics, but ceramics it was and then, instead of throwing bowls which i just couldn’t seem to get the hang of, I made clay monsters and creatures. I drew monsters and creatures too, the ones of my nightmares. Yeah, I had nightmares and a lot of trouble falling and staying asleep. Melatonin has brought peace and tranquility to this life long insomniac. So in this manicured, middle class house there were 3 fucked up kids each coping in their own ways, each destined for drug and behavioral issues, but separately, very separately and I was the outlier, I was the sensitive one. My house wasn’t a good place to be when you’re sensitive and introspective. But as a kid and young adult and even now, it’s hard to shake your formative years being told you’re doing it all wrong, you’re doing everything all wrong, you’re not fulfilling our needs and you’re bad, bad, bad. My sister and brother seemed to prefer negative attention over no attention, which I think is common, I’ll take no attention any day! I still can’t deal with conflict.
Both parents really hated that I was quiet and awkward and they assumed that I was that way intentionally to torture them, that it was a conscious, defiant decision because they were supposed to have precocious children that put on plays for their dinner party guest's entertainment and dazzle them with their conversational skills. My modus operandi at dinner parties when I was supposed to be showing off, god knows what, was to declare a stomach ache and go to my room. I spent a lot of time in my room, mostly voluntarily and sometimes being dragged by my long hair which I loved until i was dragged by same hair to get it chopped off because my mother needed me to have a Dorothy Hamill haircut. No amount of begging, pleading, gravelling and sobbing dissuaded my mother from anything and she was bigger than me and stonger than me and had a temper and a penchant for loud yelling and name calling. Often times, I think my mother would prefer to see me fail and be right than to be wrong and see me succeed. I once showed a therapist a letter she’d written to me spelling out some of my deficiencies as a daughter and the therapist was aghast, I needed the reality check. She advised me to break it off completely, that my mother was poison, but I’m a softie, I would have loved to, but I just couldn’t do it. Sometimes my mother would “punish” me by not speaking to me for months or years and I always loved those times.
I used to try, I really did... I’d sit in silent car rides with her knowing she was getting angrier and angrier and I’d say to myself “talk, say something, say something.” But I honestly and truly didn’t know what to say... I just had nothing to say and if I did, well I’d be too damned scared to say it. What I remember most about childhood was a searing stomach ache and running, running, after other kids trying to keep up and barely doing so. I used to look at people talking, my sister talking to adults at Thanksgiving and I just couldn’t imagine what they were talking about. What did people talk about?
About 15 years ago when my oldest son was a toddler, my mother was visiting. She didn’t meet him, her first grandson until he was a year old because she was mad at me and my mother is all or nothing. One fight with a best friend and she never spoke to them again and from that stems my fear of loss and so what happens? I keep losing things, I’ve lost love (who hasn't?), I’ve lost my health, I’ve lost a child, I’ve lost friends, I’ve survived loss, but I still fear it. Maybe now I fear it for different reasons, I’ve lost so much, I just can’t handle any more although I do realize that this is first world loss and a first world life. If I advocate for myself, if I make one wrong move, I think my best friends will never speak to me again, it’s so ingrained. I work on this daily, consciously, now that I recognize it, but it’s a hard way to live.
Anyway, my mother was talking about those silent car rides to ice skating lessons and by the way, don’t ever ask me if I’m watching the skating at the winter olympics, I’m not, I’m not, I’m not. She told me that I was silent to deliberately hurt her feelings. I explained that while I know I’ve hurt her many times, I have never done it deliberately. That I don’t like to see anyone in pain, I’m overly empathetic and I can loathe someone, but If I see them cry, I’ll feel terrible and I’d give them my shoes to make them feel better (although if you’ve seen my shoes, you’d know this tactic would likely fail). I feel sorry for everyone in jail, especially death row no matter what horrible thing they did, I can’t handle suffering and while I am a flawed, awkward clod, I don’t do things on purpose to hurt people, I’m not a schemer, or a game player and I explained my inability to open my mouth, the pressure I felt to do so, and my absolute, frozen terrified inability. And she said no, that wasn’t true, I was intentionally trying to hurt her feelings. Ah, because that’s what she would do. We don’t have a lot in common. OK, we have nothing in common and I just don’t relate to this woman who is my mother, I always thought that was due to shortcomings and abnormalities of my own, but I have now watched her systematically alienate her only grandchildren who are the axis on which the earth spins and she will receive no gentle nudges of assistance from me on how to relate to them. Nope, she knows best despite it never, ever working.
I always felt guilty about how uncomfortable was around my father, as in physically ill, fetal position, nauseous around him uncomfortable until I saw him with my 2 year old son, the love of my life. It’s incredible what you can see as a third party, that you can’t see when you are 6 or 10 or 12 or even 20. It’s incredible what you can see when you’re a mama who really does love her baby unconditionally. My father asked my sweet, innocent, happy, jolly, lighthearted son if he wanted a present. “yes”, “it’s in my pocket (front pocket, deep pocket, saggy old guy shorts)”, “give it to me”, “reach in and get it”, “I don’t want too, please can I have it?.” And I could see the look on his face change. “If you want the present, just reach into my pocket and you can have it.” “I don’t want it, it’s ok”. And his face changed more, as did my fathers. “you don’t want the present I brought just for you? do you know how that makes me feel? don’t you love me? I love you more than anything in the whole wide world and I brought you a present, just reach into my pocket... unless you don’t love me, do you love me or not?
Bam, I got it, my whole life flashed before my eyes. No, I didn’t make things up as I’d always been told. I wasn’t a bad “daughter” as I’d always been told, I wasn’t a bunch of other invectives either and what the fuck, who tells their kid they’re a prude because they don’t want to take their shirt off while doing backyard chores? What decent man uses that word in a derogatory sense or any sense towards their daughter? Holy shit! I saw the look on that sweet boys face and that was the look on my face for so, so long and I was not ever, ever gonna see that look on that boys face again, ever, because THAT is what mom’s do.
I did continue to see my father and his just as crazy, even more narcissistic 3rd wife for a few more years, I still fell into feeling guilty and their antics would have been amusing, but only at a further distance, which perhaps I now have. Visits were highly supervised and controlled and I would jump on them immediately for anything out of line. It was getting harder and harder as they were pushing for an overnight visit that was never, ever going to happen, and as my father got more verbally abusive, I started throwing it right back at him. They started manipulating the kid mercilessly, telling him all the things they would buy him if his mommy would let him come visit... all the fun his mommy was depriving him of, I would hear these things whispered loudly and also my son saying “no thank you”. Later he would ask me if I was going to make him go and I reassured him, of course not. And I would see another face that looked familiar, when my father would bring a massive dollar store erector set and expect that my four year old would have the attention span to focus on the ill fitted pieces for 6 hours straight “what’s wrong with you? you don’t know how to use a screwdriver? don’t your parents teach you anything?” So when Jonah was a few months old, and the wife picked a fight with me while I was driving a car with my kids in the back, her face turning all shades of red and purple, shrieking every vulgar name she knew at me, I had had enough. And this long suffering citizen launched into the most cathartic series of fuck you’s she has ever uttered. Once I started, I couldn’t stop, I have never screamed at anyone to go fuck themselves like that to this day and it was glorious. Afterwards my father told me I should apologize to her, but that she need not apologize to me because everything she had said about me was true, I was a cold hearted bitch. And that was the last time I saw either of them.
G was very upset, crying, sobbing, shaken, he’d never heard yelling like that and he thought that nana M had been very mean to me. It was a super hot summer day and also monroe dairy delivery day, so we hunkered down in my bedroom with the air conditioner on and ate the whole gallon of melty ice cream that I’d ordered that week with the milk. In this moment, I felt like a” grown up” for the first time, I felt free and that I finally had a family of my own and I just was not going to expose them or myself to this brand of crazy any more, despite the obligations I’d be preached.
I have rarely been clearer in my mind on anything than that being the right thing to do, but I knew I had to live with it, had to have the moral high ground, so that xmas, I sent a card with a picture of the kids and wrote “thought you would like to know the kids are happy and healthy”. I knew my father and his wife well enough to know that he wouldn’t respond, the only thing they would respond to was my begging and gravelling for forgiveness and then paying tribute to their greatness and superiority, apologizing for my dreadfullness and inability to see this sooner, to let them know I repented of my cold-hearted bitch ways, I was ready to learn from them. Yeah, not happening. I also know that his wife was exactly the person who would intercept that card and toss it in the trash. Either way, I didn’t hear from him and I was so relieved. Now i had the moral high ground and figured I would go to his funeral some day, and gain closure with a very clear conscious.
I was in the second of three families albeit the third was filled with steps that he worshipped and adored, he was the much youngest of five and had my sibs and I late and so how long could he live, he’d already outlived his whole family by decades... well, it turns out, a long freaking time, that lifelong, obese alcoholic lived until the ripe old age of 96 and was bopping around Manhattan, skirt chasing and going to the theater, living the life until the month before his organs just gave out.
I was in New Hampshire visiting friends, having a lovely walk around a reservoir when I got the call last summer. I felt nothing, absolutely nothing. On the car ride home later that day I started reliving stuff I’d not thought about in years, the only time I thought about him was when on occasion I’d imagine what it would be like if i were expecting a visit and as I’d start to clench up and feel queasy, I’d suddenly get so happy that I just didn’t have that in my life any more and why, oh why, did I endure it for so long? Training and guilt, powerful tools. People say, oh everyone has family drama, everyone has crazy relatives, this doesn’t help the ones of us with truly, truly toxic families of origin.
Thoughts of his death faded quickly as I got back to my house to find it completely destroyed by my now 19 year old son and his fellow camp counselors who were spending the summer becoming experts in finding party houses, and equally non adept at covering their tracks, but that is surely another story.
I didn’t go to the funeral, felt no need whatsoever and if I feel anything at all, it’s slight relief he’s off the planet and no one on earth, especially my brother has to deal with him ever again. That guy was a piece of work, a harcore seriously, one of a kind, fucked up sanctimonious piece of work.
I have so many stories of my father and his wife, both of whom fell out of a bad woody allen movie, that yeah, it could fill a book, ok, i admit it, I’ve had two therapists that I could never afford to spend extended time with tell me I could write a book about these people, (who could make them up?) that well, maybe I’ll write a book. If I were tragic, it would be tragic, but I’m not tragic and there really are stories, because until you’re met real narcissists, you don’t know nothin’. She fancied herself an “actress” because she took an acting class for 50 years and had once been in an off, off, off broadway play, she did her makeup every day like she was about to go on stage, if I were a small child I would be frightened if she came at me too fast. She had strong thoughts about make up. “Kim, you could be pretty, if you’d just try some makeup.” The talk of her acting and her art was nonstop and once, she wrote a script for a t.v. show, based on herself, that she made everyone read. She literally put into words the way she saw and often described herself... the nicest, most big hearted person who loves, loves, loves everyone, “did you know that not only have I never said anything negative about anyone ever, I’ve never even thought it, I’m only able to love, that’s just the way I am, my son bob, he’s brilliant, brilliant, one of the most brilliant people in the country and it’s like his wife doesn’t even know she’s fat, you’d think she’d want to dress better when her husband is such a handsome man. Although she is smart, she is almost as smart as him, but I think the kids really miss out, it’s like she doesn’t know she has kids, and how can you take care of kids when you don’t even care about taking care of yourself?”
Bobs wife was the salt of the earth. I only met them a few times, but they seemed like a great couple and a great family with two lovely welll adjusted daughters that were thriving. She was kind, warm and smart, easy going and funny, and had a very rewarding career in technology while being a most excellent involved mother. Like many of us, she coulda lost a few, but she was a happy person that had created a happy family with this lucky man. So there may in fact be a book in there, somewhere, someday. I’ve always thought, oh, it’s just too long a story, but I guess that’s what books are for. And then there are Marilyn’s thoughts on where homosexuals come from.
In the back of my mind I’ve known that if I ever really did write a book, this is where I’d have to go. Because that is the story, the theme, the thread. It’s how you go from fucked up childhood, to fucked up twenties, to fucked up marriage, to fucked up pregnancies, to fucked up divorce and fucked up cancer and all sorts of fucked up things in between and find happiness in the process. How it takes some of us 50 years to get to where some people are emotionally in their twenties and where many people never get. Happy. At peace. Mistresses of their domain. How you wander along aimlessly with very little in your corner, no tethering support system of family or extended family and somehow you build a life. A quiet, peaceful life. How you become a poorly dressed, frumpy warrior princess at 51 with no boobs leading the way, shining light in the darkness. How you make peace with not having things you really wish you’d had, real parents, cousins, family picnics, family traditions and how while you tried to create those things by getting married and having babies it didn’t quite work out that way. You don’t have what you envy in some of the families around you, but you made it, you made it all by yourself and it’s beautiful and you don’t take a blessed thing for granted. It’s about that. It’s about not, not, not ever being a victim or making excuses, sorry victim/excuse loving culture. It’s about the ability we have to fix ourselves, it’s a choice, it’s our responsibility as human beings to grow and evolve and learn and change, and anyone with half a brain can do it (but you need at least half) It’s about laughing, it’s about ridiculous things, it’s about tenacity because is there really any other choice? It’s about making yourself do scary, scary things ike speaking out loud and then, after decades, expecting someone to listen, and then talking to strangers and before you know it you’re stranded in the dominican republic typing in an outdoor shaded lounge on a warm but not hot day listening to frank sinatra and having a cup of tea because you’re body just can’t, can not handle another coco loco.
And it’s about people, the awfulness and beauty of people and how unexpected people can touch you in unexpected ways at unexpected times. So this little essay is dedicated to Donna Golden and Anastasia Tompkins. Neither of which is my BFF, they are casual friends, esteemed acquaintances that because of that horrible/beautiful thing called FaceBook I stay in casual contact with, but they have chosen to read all of my posts and repeatedly say “book, book, book”, they have given me a much needed dose of confidence and encouragement so consistently since I started the blog. What I know about them is that they are smart, discriminating, very different women and I’m going to choose to trust them. I choose to stop or at least try to stop listening to that voice in my head that says, you are average at best, what do YOU have to say? you’re ok, you’re a little funny, a little interesting, but mostly a neurotic, insecure nutball (not an actual ball of nuts, i’m not that crunchy), I’m going to try to drown out that voice with Donna and Stasia’s voices. And I’m going to follow my bliss. I really fucking love to write. So fuck it, I’m a narcissist, I’m writing about myself, my observations, my perceptions. Read it or don’t. I’m a bad ass scuba diver, I can do what I want. Thank you ladies. And my BFFs, you know who you are, you are my family. But seriously, who’s picking me up at the airport?
Thursday, October 2, 2014
Pink Ribbons Make Me Cry
I stopped blogging a few months ago for two reasons. First because I was just plain too busy, sometimes to even eat, let alone sitting down to write, and second, because I finally felt that people just plain knew too much about me, blogging leads to some odd relationships, people who know so much about me, and I, very little about them, it began to seem unbalanced and uncomfortable. So I stopped. Now, if someone wants to know what I’m up to, they have to actually get in touch with me and we have to spend real live time together. Took a break from my virtual life to have a real one.
I was busy dealing with a teenager with a bad case of Senoritis and the accompanying antics, and then getting that same boy off to college in one piece. Simultaneously, I rented a retail space and set about consolidating the various aspects of my schizophrenic, raggedy business into a full time retail store. I’m a girl on my own, so there was a lot to be done in a condensed period of time and limited funds, so I’ve been busy with a capital "B". I’ve been working 10 hour days, 7 days a week since mid-June and I’m finally hitting the wall, I'm exhausted. My store opened on September first, but I’m still moving things out of my beloved studio. Leaving the building I’ve been in for five years, the tall ceilings, and brick walls as well as my studio-mate who has become more than a friend, a sister, which has been difficult. At the same time, I’m trying to focus on my younger son and unplug while I’m at home to be more present and that's been wonderful.
But what puts me here at my keyboard instead of attending to the myriad tasks I’m falling behind on is that it’s Pinktober and this can be a very difficult month for breast cancer patients like myself. While I’m not in active treatment, finally checking in with my oncologist only every six months, I don’t use the word survivor because one is only a survivor until they’re not and I’m well aware of the very high risk I run of being done in, and done in quickly by this disease, which is called, in my case, triple negative breast cancer.
Pinktober is full of pink parties, events, endorsements and pink products. All eyes are on breast cancer and it turns my eyes inward towards breast cancer and makes me angry and sad. I don’t want my eyes focused inward on breast cancer, I want to go about my life, but all of this false “awareness” prevents that. With every billboard or celebrity endorsement I cringe. I cringe at the thought that most people think that breast cancer is a singular disease. I cringe that breast cancer is only important one month of the year, when many of us live with the effects of it year round. I cringe that most people think that breast cancer is easily treated and cured and that the walk or run they just did raised money for anything other than the over head of the run or walk they just did. Yep it paid for the advertising, the t-shirts, the water bottles and the positive P.R. of whatever group with highly paid directors put it on. Maybe that event raised enough money for that group to offer a free class to breast cancer patients about how to draw on eyebrows with a sample of some donated, likely toxic product, because eyebrows or lack thereof, are the chief concern of someone with a life-threatening disease.
All of this awareness leads people to think that you get diagnosed, you get treated and then you go on your merry way. Maybe that’s true for some people. Some people are treated for benign, slow growing cancers that might not even need to be treated because of the awareness hysteria, and then there’s the rest of us.
I’m not fine. I lost my business due to breast cancer. I used to make a good portion of my income selling my jewelry at shows, I can’t do that now because radiation destroyed my right shoulder and I couldn’t possibly put up a tent without excruciating, tears in the eyes pain. I can’t go on that pink walk or run because I have neuropathy in my hands and feet from one of the chemo drugs I had pumped straight into my heart via the surgically implanted port I had in my chest for a year. My heart that my treatment aged 10 years along with the rest of me, that’s what the doctors approximate.
I can’t walk without pain, or stand for long. My right and primary arm is swollen from lymphodema caused by deforming surgery, I still have pain, itching and maddening tightness along the 16” scar across my chest. I have to do payroll and write checks today. I have a hard time holding a pen in my swollen, partially numb hand, so it takes a while and my hand will hurt for two days. Everything takes me longer, thinking takes me longer.
Neuropathy also causes muscle cramps, that’s been a big issue for me lately. Sometimes I’m so tired I just want to sit on the couch and watch t.v. or listen to the radio, but my feet start cramping up and I have to walk in circles to get it to stop. I sit back down and they start right up again. I get cramps going up my legs, in my stomach or sides, just from rolling over in bed. So I don’t sleep well because going to bed I’m contemplating what pain is from treatment and what might be cancer, and then I wake up with muscle cramps and have to get up and walk around.
So that’s what cancer is and it doesn’t matter if it’s breast cancer or any other. And don’t they teach us from early on not to be exclusionary? How do those pink ribbons make people with ovarian cancer feel, or pancreatic cancer, or colon, or bone, or brain, how do they feel? They feel excluded and like second class citiziens, like their cancer isn’t popular, while I feel like everyone’s looking at me and insisting I’m fine because if we talk and talk and run and walk for breast cancer, it must be well in hand, everyone has done their part, all while very few are doing anything at all constructive.
I’m not even going to get into the perverse sexualization of this disease, because I could go on forever, I just want to say this, Pinktober makes me cry. Seriously, I’ve been feeling inexplicably blue and then I realized that’s what it is. This movement, that claims to want to help people like me, is making someone like me, as in me, burst into tears. Pink ribbons actually make me cry. Cancer didn’t make me cry, a year of chemo, rads, surgery, blood transfusions, daily injections didn’t get my spirit down, but these fucking pink ribbons, these corporate assholes and people buying into this crap make me cry. For me, this pink ribbon nonsense shines a light on how not alright I am, the impediments and discomfort I live with and have to accept.
So if you care about peope with cancer, any kind of cancer, if you want to find a cure for cancer, put down the pink. Lobby congress to appropriate money to universities and the NIH for research. Lobby pharmaceutical companies to make drugs affordable, and insurance companies to pay for physical therapy in addition to wigs and prosthetics, in a misguided (in my opinion) attempt to normalize the abnormal. Cancer happened, lets stop covering that up, or pretending it’s a big happy club. Let’s elect people who will fund stem-cell research and let’s put pressure on Monsanto and their ilk and fracking companies to stop polluting our air, water and food so that there will be less cancer to cure.
But please, please, let’s get rid of pinktober so that people like me can just go about their business without feeling disrespected, without bursting into tears. Let us go on with our lives and you go on with yours without having parties and making public statements because it makes you look good or it’s fun, it's at my expense and that's not o.k. It’s not fun from my perspective and frankly, I think I’ve earned the right to my perspective trumping theirs on this. I’ve been there, done that, I live with the after effects every minute of every day of which I have chronic pain, disabilities and fear. Put down the pink product, take off the ribbon or the pink socks, you can do it.
For additional information, please go to http://www.bcaction.org They’re the good guys in my book and they are who I support.
I was busy dealing with a teenager with a bad case of Senoritis and the accompanying antics, and then getting that same boy off to college in one piece. Simultaneously, I rented a retail space and set about consolidating the various aspects of my schizophrenic, raggedy business into a full time retail store. I’m a girl on my own, so there was a lot to be done in a condensed period of time and limited funds, so I’ve been busy with a capital "B". I’ve been working 10 hour days, 7 days a week since mid-June and I’m finally hitting the wall, I'm exhausted. My store opened on September first, but I’m still moving things out of my beloved studio. Leaving the building I’ve been in for five years, the tall ceilings, and brick walls as well as my studio-mate who has become more than a friend, a sister, which has been difficult. At the same time, I’m trying to focus on my younger son and unplug while I’m at home to be more present and that's been wonderful.
But what puts me here at my keyboard instead of attending to the myriad tasks I’m falling behind on is that it’s Pinktober and this can be a very difficult month for breast cancer patients like myself. While I’m not in active treatment, finally checking in with my oncologist only every six months, I don’t use the word survivor because one is only a survivor until they’re not and I’m well aware of the very high risk I run of being done in, and done in quickly by this disease, which is called, in my case, triple negative breast cancer.
Pinktober is full of pink parties, events, endorsements and pink products. All eyes are on breast cancer and it turns my eyes inward towards breast cancer and makes me angry and sad. I don’t want my eyes focused inward on breast cancer, I want to go about my life, but all of this false “awareness” prevents that. With every billboard or celebrity endorsement I cringe. I cringe at the thought that most people think that breast cancer is a singular disease. I cringe that breast cancer is only important one month of the year, when many of us live with the effects of it year round. I cringe that most people think that breast cancer is easily treated and cured and that the walk or run they just did raised money for anything other than the over head of the run or walk they just did. Yep it paid for the advertising, the t-shirts, the water bottles and the positive P.R. of whatever group with highly paid directors put it on. Maybe that event raised enough money for that group to offer a free class to breast cancer patients about how to draw on eyebrows with a sample of some donated, likely toxic product, because eyebrows or lack thereof, are the chief concern of someone with a life-threatening disease.
All of this awareness leads people to think that you get diagnosed, you get treated and then you go on your merry way. Maybe that’s true for some people. Some people are treated for benign, slow growing cancers that might not even need to be treated because of the awareness hysteria, and then there’s the rest of us.
I’m not fine. I lost my business due to breast cancer. I used to make a good portion of my income selling my jewelry at shows, I can’t do that now because radiation destroyed my right shoulder and I couldn’t possibly put up a tent without excruciating, tears in the eyes pain. I can’t go on that pink walk or run because I have neuropathy in my hands and feet from one of the chemo drugs I had pumped straight into my heart via the surgically implanted port I had in my chest for a year. My heart that my treatment aged 10 years along with the rest of me, that’s what the doctors approximate.
I can’t walk without pain, or stand for long. My right and primary arm is swollen from lymphodema caused by deforming surgery, I still have pain, itching and maddening tightness along the 16” scar across my chest. I have to do payroll and write checks today. I have a hard time holding a pen in my swollen, partially numb hand, so it takes a while and my hand will hurt for two days. Everything takes me longer, thinking takes me longer.
Neuropathy also causes muscle cramps, that’s been a big issue for me lately. Sometimes I’m so tired I just want to sit on the couch and watch t.v. or listen to the radio, but my feet start cramping up and I have to walk in circles to get it to stop. I sit back down and they start right up again. I get cramps going up my legs, in my stomach or sides, just from rolling over in bed. So I don’t sleep well because going to bed I’m contemplating what pain is from treatment and what might be cancer, and then I wake up with muscle cramps and have to get up and walk around.
So that’s what cancer is and it doesn’t matter if it’s breast cancer or any other. And don’t they teach us from early on not to be exclusionary? How do those pink ribbons make people with ovarian cancer feel, or pancreatic cancer, or colon, or bone, or brain, how do they feel? They feel excluded and like second class citiziens, like their cancer isn’t popular, while I feel like everyone’s looking at me and insisting I’m fine because if we talk and talk and run and walk for breast cancer, it must be well in hand, everyone has done their part, all while very few are doing anything at all constructive.
I’m not even going to get into the perverse sexualization of this disease, because I could go on forever, I just want to say this, Pinktober makes me cry. Seriously, I’ve been feeling inexplicably blue and then I realized that’s what it is. This movement, that claims to want to help people like me, is making someone like me, as in me, burst into tears. Pink ribbons actually make me cry. Cancer didn’t make me cry, a year of chemo, rads, surgery, blood transfusions, daily injections didn’t get my spirit down, but these fucking pink ribbons, these corporate assholes and people buying into this crap make me cry. For me, this pink ribbon nonsense shines a light on how not alright I am, the impediments and discomfort I live with and have to accept.
So if you care about peope with cancer, any kind of cancer, if you want to find a cure for cancer, put down the pink. Lobby congress to appropriate money to universities and the NIH for research. Lobby pharmaceutical companies to make drugs affordable, and insurance companies to pay for physical therapy in addition to wigs and prosthetics, in a misguided (in my opinion) attempt to normalize the abnormal. Cancer happened, lets stop covering that up, or pretending it’s a big happy club. Let’s elect people who will fund stem-cell research and let’s put pressure on Monsanto and their ilk and fracking companies to stop polluting our air, water and food so that there will be less cancer to cure.
But please, please, let’s get rid of pinktober so that people like me can just go about their business without feeling disrespected, without bursting into tears. Let us go on with our lives and you go on with yours without having parties and making public statements because it makes you look good or it’s fun, it's at my expense and that's not o.k. It’s not fun from my perspective and frankly, I think I’ve earned the right to my perspective trumping theirs on this. I’ve been there, done that, I live with the after effects every minute of every day of which I have chronic pain, disabilities and fear. Put down the pink product, take off the ribbon or the pink socks, you can do it.
For additional information, please go to http://www.bcaction.org They’re the good guys in my book and they are who I support.
Monday, July 14, 2014
Tumor Markers Stable
My oncologist says a little knowledge is a dangerous thing, he's right no doubt, but I'm a knowledge girl, I've got to know everything. I can't process something until I understand it, but as I get older I realize not everything can be understood. I was so much more nervous about this Oncology check-in than the others, or maybe I wasn't and I just don't remember. I walked up to the hospital today trying my best to keep my bones from disintegrating. When I checked in I learned that you don't get a plastic bracelet with every visit and I felt mildly victorious. I used to be obsessed with the waste of this, especially the hard plastic clips used to fasten them. There were little dishes of these by each receptionist's desk, I'd imagine how many cases they'd go through in a day or a month, and I'd annoy the receptionist with these thoughts. I'd talk about how many of those must go to the landfill each day when we were all cognizant and knew who we were. If I'm going in for surgery, I'm ok with being labelled all over the place, but for a quick blood draw or doctor's appointment, it seemed wasteful.
In the waiting room I realized there's something I'll never, ever understand and that's Kathie Lee and Hoda. Who is this Hoda person? I don't know the appeal, they don't even seem real, they seem like an amalgam of mainstream thought and style entered into a computer program and then generated in 3d. I can kinda get the Kelly and Michael thing, but not these two, they are icky on a stick.
My appointment was anticlimactic because they forgot to run the most important test, the one that's been keeping me up at night, the infamous tumor marker. I gave another vial and I got a voicemail a few hours later that I went from a 36 to a 40 which is statistically insignificant, so I got my cancer card punched for the next six months. I always think I'll rejoice and celebrate, but instead I'm just exhausted and relieved and maybe I'll sleep better tonight. The reason my doctor says that knowledge can be a dangerous thing is because I know where I am on the bell curve of risk. I know that for the next twelve months I'm climbing to the summit of risk and then I start descending from the peak. And me, well, I'm clumsy, I'll get up there and trip and take an eye out on the pointy part of the peak.
I need more nature. Little dude and I went to a friends in a more rural location the other night and we walked in the dark and were surrounded by fireflies. I haven't seen fireflies in years and J never has. It was magical, the woods seemed all lit up for xmas and my son kept putting his arm around me and waxing poetic. There was a full moon too and warm summer air, it was special, we needed it. It's hard to get that boy away from the computer, there's kind of no way to do it if we're at home, I have to get him off-site which is hard when so many normal summer options are out. He doesn't swim, he has sensory issues and loathes sand between his toes, neither of us like crowds much. He likes to fish, but I don't know the first thing about where and how to go about that. I took him to NH a couple of weeks ago and we did art galleries and cafés which we both love, but once I get the store open, no more weekends off for me for a good long time. Working all the time as it is getting ready and there seems and endless list of things to do. I could manage my time better, I suppose I need not be writing this and I spend an inordinate amount of time sitting on my porch listening to the trees rustle in the wind. Interspersed with that, I get an artist bio written or something ordered for the store and in the back of my mind I'm thinking about margarita's and whether I'll go make one or not.
In the waiting room I realized there's something I'll never, ever understand and that's Kathie Lee and Hoda. Who is this Hoda person? I don't know the appeal, they don't even seem real, they seem like an amalgam of mainstream thought and style entered into a computer program and then generated in 3d. I can kinda get the Kelly and Michael thing, but not these two, they are icky on a stick.
My appointment was anticlimactic because they forgot to run the most important test, the one that's been keeping me up at night, the infamous tumor marker. I gave another vial and I got a voicemail a few hours later that I went from a 36 to a 40 which is statistically insignificant, so I got my cancer card punched for the next six months. I always think I'll rejoice and celebrate, but instead I'm just exhausted and relieved and maybe I'll sleep better tonight. The reason my doctor says that knowledge can be a dangerous thing is because I know where I am on the bell curve of risk. I know that for the next twelve months I'm climbing to the summit of risk and then I start descending from the peak. And me, well, I'm clumsy, I'll get up there and trip and take an eye out on the pointy part of the peak.
I need more nature. Little dude and I went to a friends in a more rural location the other night and we walked in the dark and were surrounded by fireflies. I haven't seen fireflies in years and J never has. It was magical, the woods seemed all lit up for xmas and my son kept putting his arm around me and waxing poetic. There was a full moon too and warm summer air, it was special, we needed it. It's hard to get that boy away from the computer, there's kind of no way to do it if we're at home, I have to get him off-site which is hard when so many normal summer options are out. He doesn't swim, he has sensory issues and loathes sand between his toes, neither of us like crowds much. He likes to fish, but I don't know the first thing about where and how to go about that. I took him to NH a couple of weeks ago and we did art galleries and cafés which we both love, but once I get the store open, no more weekends off for me for a good long time. Working all the time as it is getting ready and there seems and endless list of things to do. I could manage my time better, I suppose I need not be writing this and I spend an inordinate amount of time sitting on my porch listening to the trees rustle in the wind. Interspersed with that, I get an artist bio written or something ordered for the store and in the back of my mind I'm thinking about margarita's and whether I'll go make one or not.
Friday, July 11, 2014
Anxiety and X-Files
My stomach hurts, really hurts, my head hurts too. A couple of advil will do the trick as far ast he head goes, but my stomach hurts and my who self is sagging. My eyes are droopy and my torso feels like it’s curving inwards because I want to roll up like a pill bug into a little ball and roll away, roll under a shady rock and stay there hidden, out of sight.
Anxiety and stress, anxiety and stress, the gruesome twosome. I’ve made such progress staying settled and present and keeping the howling wolves at bay, but sometimes they approach, they breach the perimeter. I gave my vials of blood on Monday, no big deal, I was cheery going in and cheery going out, but imperceptively, as the week’s gone on, they anxiety has crept up. I’ve got a long weekend between now and my oncologist appointment on Monday. I can’t conceive of hearing anything other than I’m stable, that my cancer markers are in check and everything else looks good. But who out there can possibly conceive of hearing anything other than that and yet so many do. So, so, so many do.
Anxiety is like the black tar that crept into people, overcoming them on the X-Files, that’s a distant memory, oh Mulder and Scully, I loved you so. You don’t see anxiety coming and it starts slowly, but before you know it, you’re consumed and consumed, is what I am at the moment and disturbingly powerless against it. I don’t like powerless.
Anxiety, is robbing me of a precious day. Today is a precious day, every day is, i want to live every minute of it fully, with joy and at peace, but I’m not at peace and that makes me feel like I’m wasting valuable time, because that’s what it’s all about, time, and life, life and time and every minute is valuable. Anxiety affects me in such a physical way, it makes me see differently, process differently, I am sensitive and insecure.
And my stomach hurts.
I’ve been working like mad lately, fixing up my new space, cleaning, painting, making displays, ordering things, planning, so much left to do, signage and packaging and logos and pricing. Then I’m at the studio making and cleaning and purging and packing and then it’s home for cooking and cleaning and planning and plotting and the outcome of all that could be moot, unless I get my dance card punched for another five months of getting to be alive by the doctor man on monday. Living with that duality is surreal, it’s freakish. And at times, and that would be right about now, stressful.
And stressful is wasteful, a whole vicious cycle. Fear and loathing, fear and loathing. Today is one of those days I felt compelled to write, I had to write. I don’t know why I can’t just write it into a journal, I don’t know why that isn’t enough. Is it our innate need to be heard? I’m often embarrassed when I post, but I can’t help it, something in me, that I don’t understand, needs to do it.
I feel like the past few months, I’ve been masquerading as a “normal” person. I can do so much more this summer than last. Last summer I couldn’t walk to my local farmer’s market, this year I can do it. It tires me out a bit, but I can absolutely do it. I can have people over, I rarely nap anymore, there’s just so much more I can do, so I was starting to forget, but I’m not “normal”. I’m travelling around with a guillotine over my neck that can snap at any moment. I know that essentially, we all are, the difference is I’ve met mine, I know it’s name and that makes me a circus sideshow.
The other day, I learned that a lovely, lovely woman in my neighborhood, who I’ve known casually and peripherally for years, and is my age or a few years older was just diagnosed with stage IV colon cancer. I have a friend who came back from that same diagnosis ten years ago and she is a funky, spunky, monkey. So this woman has a long and arduous road, but there is hope... at least I hope there is hope. She has a large, supportive family and tight community, which is all good. She is in my heart and thoughts and maybe I’ll find a way to be helpful, I hope so.
The reason I know is because someone told me, not even knowing that I knew the person, but once you’ve had cancer, everyone tells you about all the people they know with cancer or who have just been diagnosed. You become a repository for everyone’s cancer stories and that makes cancer even more disproportionate to your life, if there can be such a thing after you’ve been through surgeries, chemo, rads and disability.
This week I’m a cancer survivor, next week, maybe not. That’s why those cancer words suck. Survivor, fighter, warrior, battle, succumbed. They try to give order and meaning to a situation that has none.
I had to leave work, couldn’t manage, I’m sitting on my porch, beautiful porch, but instead of seeing, feeling the beauty of my oasis, it’s tinted with my ugly stress and anxiety, so much seems grey instead of bright, 70% opacity. Such a waste of time, I wish I knew how to get a grip, be the mistress of my emotions, of my destiny, even if my destiny is one day long, I want to be the boss of it.
Anxiety and stress, anxiety and stress, the gruesome twosome. I’ve made such progress staying settled and present and keeping the howling wolves at bay, but sometimes they approach, they breach the perimeter. I gave my vials of blood on Monday, no big deal, I was cheery going in and cheery going out, but imperceptively, as the week’s gone on, they anxiety has crept up. I’ve got a long weekend between now and my oncologist appointment on Monday. I can’t conceive of hearing anything other than I’m stable, that my cancer markers are in check and everything else looks good. But who out there can possibly conceive of hearing anything other than that and yet so many do. So, so, so many do.
Anxiety is like the black tar that crept into people, overcoming them on the X-Files, that’s a distant memory, oh Mulder and Scully, I loved you so. You don’t see anxiety coming and it starts slowly, but before you know it, you’re consumed and consumed, is what I am at the moment and disturbingly powerless against it. I don’t like powerless.
Anxiety, is robbing me of a precious day. Today is a precious day, every day is, i want to live every minute of it fully, with joy and at peace, but I’m not at peace and that makes me feel like I’m wasting valuable time, because that’s what it’s all about, time, and life, life and time and every minute is valuable. Anxiety affects me in such a physical way, it makes me see differently, process differently, I am sensitive and insecure.
And my stomach hurts.
I’ve been working like mad lately, fixing up my new space, cleaning, painting, making displays, ordering things, planning, so much left to do, signage and packaging and logos and pricing. Then I’m at the studio making and cleaning and purging and packing and then it’s home for cooking and cleaning and planning and plotting and the outcome of all that could be moot, unless I get my dance card punched for another five months of getting to be alive by the doctor man on monday. Living with that duality is surreal, it’s freakish. And at times, and that would be right about now, stressful.
And stressful is wasteful, a whole vicious cycle. Fear and loathing, fear and loathing. Today is one of those days I felt compelled to write, I had to write. I don’t know why I can’t just write it into a journal, I don’t know why that isn’t enough. Is it our innate need to be heard? I’m often embarrassed when I post, but I can’t help it, something in me, that I don’t understand, needs to do it.
I feel like the past few months, I’ve been masquerading as a “normal” person. I can do so much more this summer than last. Last summer I couldn’t walk to my local farmer’s market, this year I can do it. It tires me out a bit, but I can absolutely do it. I can have people over, I rarely nap anymore, there’s just so much more I can do, so I was starting to forget, but I’m not “normal”. I’m travelling around with a guillotine over my neck that can snap at any moment. I know that essentially, we all are, the difference is I’ve met mine, I know it’s name and that makes me a circus sideshow.
The other day, I learned that a lovely, lovely woman in my neighborhood, who I’ve known casually and peripherally for years, and is my age or a few years older was just diagnosed with stage IV colon cancer. I have a friend who came back from that same diagnosis ten years ago and she is a funky, spunky, monkey. So this woman has a long and arduous road, but there is hope... at least I hope there is hope. She has a large, supportive family and tight community, which is all good. She is in my heart and thoughts and maybe I’ll find a way to be helpful, I hope so.
The reason I know is because someone told me, not even knowing that I knew the person, but once you’ve had cancer, everyone tells you about all the people they know with cancer or who have just been diagnosed. You become a repository for everyone’s cancer stories and that makes cancer even more disproportionate to your life, if there can be such a thing after you’ve been through surgeries, chemo, rads and disability.
This week I’m a cancer survivor, next week, maybe not. That’s why those cancer words suck. Survivor, fighter, warrior, battle, succumbed. They try to give order and meaning to a situation that has none.
I had to leave work, couldn’t manage, I’m sitting on my porch, beautiful porch, but instead of seeing, feeling the beauty of my oasis, it’s tinted with my ugly stress and anxiety, so much seems grey instead of bright, 70% opacity. Such a waste of time, I wish I knew how to get a grip, be the mistress of my emotions, of my destiny, even if my destiny is one day long, I want to be the boss of it.
Thursday, July 3, 2014
A Fine Spring
I didn’t make a conscious decision to stop blogging, but once I realized it’d been a while I thought I’d write some sort of profound conclusion, life got busy and I never got to it. Between then and now I’ve been writing posts in my head, without the time to sit down and type them, and I never did settle on a grand summation.
One of the reasons I stopped writing is that I wanted to put it all behind me, I was tired of talking about cancer, it seemed like time to get over it already, but you never really get over it, it rears it’s mutated head when you least expect it and sometimes when you do. There are some things you put behind you and some that just keep following you wherever you go, I guess I need to accept that and I do. My right shoulder has been increasingly painful over the past year and despite regular physical therapy, it’s been only getting worse, so I finally went to an orthopedist who took an x-ray. The film confirmed a “frozen” shoulder, the result of surgery and radiation, which may or may not get better, but it’s good to know that when I jolt it and my eyeballs almost pop out of my head with pain, I’m not injuring it... it just hurts. The film also revealed a small lump near my lymph nodes, so I had to go see my surgeon which entailed a four-day wait in Dante’s inferno and from there another two day wait for an ultrasound which revealed a small benign calcification, nothing to worry about.
During this time, I alternated between relative calm and panic, the other day, while picking luscious red, fragrant strawberries in an endless field on a hot day with a cool breeze I thought if I die right now it would be o.k. I transcended fear for the rest of the day, I was calm. Next morning I woke up in the throes of a panic attack, my enlightened Buddha phase was short-lived, oh well, twas nice while it lasted. I could barely breathe through the ultrasound and then I made the doctor repeat over and over again, it’s nothing, it’s nothing. Now I realize why they don’t give you scans after treatment, because they would find something, we’re all filled with mysterious lumps and bumps, shadows and valleys.
Phew, that’s all I can say. Glad that’s over with, although that’s not over with, that will happen again and again for this reason or that, for the rest of my life. You’re only a “cancer survivor” until you’re not. Until you die of other causes, you don’t know. Next week I go for a blood draw to check for cancer markers and the next week I’ll see my oncologist to find out where I stand, so as much as I feel great and dare I say, look well, I have a shadow I’ll never shake. When I was first diagnosed I was stoic and fearless, I just figured I’d deal with it, but now I know better, for all those pretty ribbons, women die of breast cancer, especially the kind I had, and if I have a recurrence, just one teeny tiny recurrence, it won’t be teeny tiny for long, and as my oncologist so eloquently puts it, my time will be counted in months, not years.
Aside from the scare, I’ve been having a great time, since last I wrote. I watched my oldest boy graduate from high school, when you’ve had cancer, these milestones are even bigger because you’ve listed them in your mind as the things you’d not want to miss. I found the ceremony oddly anticlimactic as the preceding month was so filled with senioritis and graduation related activities and celebrations. During the ceremony I simply felt a quiet door closing, an era ending, and it was neither melancholy or happy, it just was, and that was ok. In the fall, my baby will go to his first choice of colleges, he has a long, wide road ahead of him to take him anyplace he wants. I’m excited for him, I feel joy in the possibilities, but I’m also worried, he will be tested, he will be challenged and I can’t scoop him up anymore and make everything better. But now is the time, it is the right time, for every thing there is a season and this 18-year long season is making way for a new one
I fell in love... and out of love, or more precisely, was fallen out of love with, which made/makes me sad, but it was so damned much fun, while it lasted I have no regrets. For a little while it was lovely, just lovely. I came out of it with a lifelong friend, and that’s not so shabby. I realized that what I really want is to be comfortably settled in a twenty year marriage... a real one, not the empty, lonely, dysfunctional one I had, a real one, the good and the bad as long as it is real and honest and mutual. But that’s not in the cards, that’s not an option, and so I don’t know what I want and I'm well aware, I don't get to choose. I liked feeling things I wasn’t sure I could feel any more, and I'm glad I was open and allowed myself to be vulnerable, but I also know that my life is full and new relationships take time, I don’t have all that much free time. Single mom’s trying to support themselves just don’t have the time and the luxury that single dads with visitation do and let’s face it... I’m a mom-thing. I would love to be a “we”, I think I'm a damned fine person to be a "we" with, but maybe I’m just destined to be a “me”. So I’m just going to let life flow and see where it takes me, my job is to find joy in the minutia, have an open mind and keep challenging myself. I'm not feeling the desperation to be with someone that I was in prior posts. I’m letting go of fantasies and living in the moment, enjoying the strawberry fields and the sweet relief of hearing that “it’s nothing" which makes me realize just how grand my life is.
When I was in treatment, when I was sick, I lost my wholesale business, I couldn’t do shows, and I still can’t. That source of income is gone for me and finally stepping back and looking at the bigger picture, I realized I can’t afford my studio and my Saturday store. Can’t just ride the coat-tails of the Winter Farmer’s Market every week, need to get a job or make one. Not a lot of jobs out there for partially disabled, haven’t been in the workforce for 18 years, 50 year old women. So when a retail space vacated in my beloved neighborhood of 21 years, four blocks from my house, I couldn’t resist. I wanted to go another year cancer-free, get through my highest risk years before making any big life changes, but I didn’t really have a choice. Line of people wanting to rent prime retail space a hop and skip from my house... had to snag it. I’m bereft at having to leave my studio-mate, every minute of sharing our space was a pleasure and nothing but easy peasy. Sharing space is a special kind of relationship of it’s own, and ours has been wonderful, we will always be friends, and room-mates become a unique kind of friend. Change is hard, but it’s unavoidable.
For the last month I’ve been working night and day to clean up a filthy, abused and neglected space. Friends have helped me out more than I can say and I’m equally terrified and excited. I am sad to lose my freedom, I’ll be chained to a box 24/7, so it damned well better be a nice box. I think my concept is good, I think this will work, if not, I haven’t a clue.
But as always, riding alongside my excitement and all this work, is the shadow... how will I come out of my oncologist’s appointment, in a really good mood or the one most dire? The next twelve months are the highest risk for me. On a bell curve I’m hitting the summit and in a year I start descending. There are outliers of course, and a lot of cancer patients die from complications of their treatment, but that doesn’t concern me, there’s only one thing that I worry about and that’s hearing that I have a metastasis, and that will start by hearing that my markers are up. I don’t want to hear that, ever.
In the midst of all these life changes, the heart, the lump, I went to NH with my youngest, my mini-me (but better), and had a perfect weekend with friends except on the way up, I got word that my long estranged father had gone into hospice and on Sunday, on a walk around the lake, I got news that he passed away. At 96, on family number three, having left a wide swath of wreckage behind him, I didn’t feel much of anything other than bad memories. While I was gone, my graduate came home on a night off from "work" with fellow camp counselors to have a party, which I naively thought would be in the backyard with firepit and a reasonable amount of alcohol which I was ok with because I know they don’t drink and drive, they just pile up like rats and sleep wherever they are. Instead, I opened the door and entered a den of filth and destruction. My antique dining room table on it’s back like a dead elephant with a leg broken off, empty bottles and red solo cups behind the couch, descriptions of bathrooms are not fit for civilized readers, sticky filth on every surface and floor which incited an anger I’ve rarely felt. When the party host arrived next evening with a carload of co-conspirators to clean I sat them down and had a wonderful rant and even finished off with yelling at them about not even separating their trash from their recyclables. The phrase “disgusting animals” and “disrespect” were generously tossed about the room and I felt better and my house got cleaned. I was merciless, damn those boys not only don’t know how to clean, they don’t see dirt. I sent my son back into the bathroom to re-clean at least six times and I made them not only mop, but hand dry the floors. A comedy of errors, but at least I'm not mad anymore. I was worried I'd be mad at him for the rest of the summer, but damn, that kid can be charming.
This morning I lit the yearly memorial candle that is delivered the day before by a dear friend who also has people to remember this month. My girl should have been 15 today and the candle will burn for 24-hours. As always, I crack up a week beforehand, today I’m fine. As usual, she goes unremembered and unacknowledged by any of her other relatives, but that’s ok too, she is remembered by her mom and I suppose I’m the only one who knew her even a little bit. I’m in my hammock with an iced tea on this very hot, muggy day hearing both my neighbor practicing her flute and my son whistling the song from Frozen while he plays computer games.
Recent drama aside, I had a wonderful spring. I watched the tall ones last season of high school baseball, I shared the bleachers with other players parents who have become friends and with who I’ve shared bleachers for years, some of them well over a decade. It was a perfect final chapter, I’m excited about my son going to college and us settling into a new normal, I’m excited about my new business venture, deeply moved by the help being offered, feeling more creative than I have in some time and more settled. Feeling like I am at a good point in my life, my soul feels calm and wise and very resilient. I feel like this is my time and with the new store I’m going to step up and own it. I will not let insecurity rule it, I will own it. I will make every decision without running around asking for advice and input, I finally realize that while there is always (much) more to be learned, I have to own my spot on this earth and I’ll stop worrying about what other people think, no more scurrying around like a worried little anxiety mouse. Time to trust my gut and my mind and my instincts and have confidence. I know more than I think I know and it’s time to own it. Integrity, respect, and strength can coexist, I’m putting my cards on the table. This is my time and cancer better not fuck it up.
One of the reasons I stopped writing is that I wanted to put it all behind me, I was tired of talking about cancer, it seemed like time to get over it already, but you never really get over it, it rears it’s mutated head when you least expect it and sometimes when you do. There are some things you put behind you and some that just keep following you wherever you go, I guess I need to accept that and I do. My right shoulder has been increasingly painful over the past year and despite regular physical therapy, it’s been only getting worse, so I finally went to an orthopedist who took an x-ray. The film confirmed a “frozen” shoulder, the result of surgery and radiation, which may or may not get better, but it’s good to know that when I jolt it and my eyeballs almost pop out of my head with pain, I’m not injuring it... it just hurts. The film also revealed a small lump near my lymph nodes, so I had to go see my surgeon which entailed a four-day wait in Dante’s inferno and from there another two day wait for an ultrasound which revealed a small benign calcification, nothing to worry about.
During this time, I alternated between relative calm and panic, the other day, while picking luscious red, fragrant strawberries in an endless field on a hot day with a cool breeze I thought if I die right now it would be o.k. I transcended fear for the rest of the day, I was calm. Next morning I woke up in the throes of a panic attack, my enlightened Buddha phase was short-lived, oh well, twas nice while it lasted. I could barely breathe through the ultrasound and then I made the doctor repeat over and over again, it’s nothing, it’s nothing. Now I realize why they don’t give you scans after treatment, because they would find something, we’re all filled with mysterious lumps and bumps, shadows and valleys.
Phew, that’s all I can say. Glad that’s over with, although that’s not over with, that will happen again and again for this reason or that, for the rest of my life. You’re only a “cancer survivor” until you’re not. Until you die of other causes, you don’t know. Next week I go for a blood draw to check for cancer markers and the next week I’ll see my oncologist to find out where I stand, so as much as I feel great and dare I say, look well, I have a shadow I’ll never shake. When I was first diagnosed I was stoic and fearless, I just figured I’d deal with it, but now I know better, for all those pretty ribbons, women die of breast cancer, especially the kind I had, and if I have a recurrence, just one teeny tiny recurrence, it won’t be teeny tiny for long, and as my oncologist so eloquently puts it, my time will be counted in months, not years.
Aside from the scare, I’ve been having a great time, since last I wrote. I watched my oldest boy graduate from high school, when you’ve had cancer, these milestones are even bigger because you’ve listed them in your mind as the things you’d not want to miss. I found the ceremony oddly anticlimactic as the preceding month was so filled with senioritis and graduation related activities and celebrations. During the ceremony I simply felt a quiet door closing, an era ending, and it was neither melancholy or happy, it just was, and that was ok. In the fall, my baby will go to his first choice of colleges, he has a long, wide road ahead of him to take him anyplace he wants. I’m excited for him, I feel joy in the possibilities, but I’m also worried, he will be tested, he will be challenged and I can’t scoop him up anymore and make everything better. But now is the time, it is the right time, for every thing there is a season and this 18-year long season is making way for a new one
I fell in love... and out of love, or more precisely, was fallen out of love with, which made/makes me sad, but it was so damned much fun, while it lasted I have no regrets. For a little while it was lovely, just lovely. I came out of it with a lifelong friend, and that’s not so shabby. I realized that what I really want is to be comfortably settled in a twenty year marriage... a real one, not the empty, lonely, dysfunctional one I had, a real one, the good and the bad as long as it is real and honest and mutual. But that’s not in the cards, that’s not an option, and so I don’t know what I want and I'm well aware, I don't get to choose. I liked feeling things I wasn’t sure I could feel any more, and I'm glad I was open and allowed myself to be vulnerable, but I also know that my life is full and new relationships take time, I don’t have all that much free time. Single mom’s trying to support themselves just don’t have the time and the luxury that single dads with visitation do and let’s face it... I’m a mom-thing. I would love to be a “we”, I think I'm a damned fine person to be a "we" with, but maybe I’m just destined to be a “me”. So I’m just going to let life flow and see where it takes me, my job is to find joy in the minutia, have an open mind and keep challenging myself. I'm not feeling the desperation to be with someone that I was in prior posts. I’m letting go of fantasies and living in the moment, enjoying the strawberry fields and the sweet relief of hearing that “it’s nothing" which makes me realize just how grand my life is.
When I was in treatment, when I was sick, I lost my wholesale business, I couldn’t do shows, and I still can’t. That source of income is gone for me and finally stepping back and looking at the bigger picture, I realized I can’t afford my studio and my Saturday store. Can’t just ride the coat-tails of the Winter Farmer’s Market every week, need to get a job or make one. Not a lot of jobs out there for partially disabled, haven’t been in the workforce for 18 years, 50 year old women. So when a retail space vacated in my beloved neighborhood of 21 years, four blocks from my house, I couldn’t resist. I wanted to go another year cancer-free, get through my highest risk years before making any big life changes, but I didn’t really have a choice. Line of people wanting to rent prime retail space a hop and skip from my house... had to snag it. I’m bereft at having to leave my studio-mate, every minute of sharing our space was a pleasure and nothing but easy peasy. Sharing space is a special kind of relationship of it’s own, and ours has been wonderful, we will always be friends, and room-mates become a unique kind of friend. Change is hard, but it’s unavoidable.
For the last month I’ve been working night and day to clean up a filthy, abused and neglected space. Friends have helped me out more than I can say and I’m equally terrified and excited. I am sad to lose my freedom, I’ll be chained to a box 24/7, so it damned well better be a nice box. I think my concept is good, I think this will work, if not, I haven’t a clue.
But as always, riding alongside my excitement and all this work, is the shadow... how will I come out of my oncologist’s appointment, in a really good mood or the one most dire? The next twelve months are the highest risk for me. On a bell curve I’m hitting the summit and in a year I start descending. There are outliers of course, and a lot of cancer patients die from complications of their treatment, but that doesn’t concern me, there’s only one thing that I worry about and that’s hearing that I have a metastasis, and that will start by hearing that my markers are up. I don’t want to hear that, ever.
In the midst of all these life changes, the heart, the lump, I went to NH with my youngest, my mini-me (but better), and had a perfect weekend with friends except on the way up, I got word that my long estranged father had gone into hospice and on Sunday, on a walk around the lake, I got news that he passed away. At 96, on family number three, having left a wide swath of wreckage behind him, I didn’t feel much of anything other than bad memories. While I was gone, my graduate came home on a night off from "work" with fellow camp counselors to have a party, which I naively thought would be in the backyard with firepit and a reasonable amount of alcohol which I was ok with because I know they don’t drink and drive, they just pile up like rats and sleep wherever they are. Instead, I opened the door and entered a den of filth and destruction. My antique dining room table on it’s back like a dead elephant with a leg broken off, empty bottles and red solo cups behind the couch, descriptions of bathrooms are not fit for civilized readers, sticky filth on every surface and floor which incited an anger I’ve rarely felt. When the party host arrived next evening with a carload of co-conspirators to clean I sat them down and had a wonderful rant and even finished off with yelling at them about not even separating their trash from their recyclables. The phrase “disgusting animals” and “disrespect” were generously tossed about the room and I felt better and my house got cleaned. I was merciless, damn those boys not only don’t know how to clean, they don’t see dirt. I sent my son back into the bathroom to re-clean at least six times and I made them not only mop, but hand dry the floors. A comedy of errors, but at least I'm not mad anymore. I was worried I'd be mad at him for the rest of the summer, but damn, that kid can be charming.
This morning I lit the yearly memorial candle that is delivered the day before by a dear friend who also has people to remember this month. My girl should have been 15 today and the candle will burn for 24-hours. As always, I crack up a week beforehand, today I’m fine. As usual, she goes unremembered and unacknowledged by any of her other relatives, but that’s ok too, she is remembered by her mom and I suppose I’m the only one who knew her even a little bit. I’m in my hammock with an iced tea on this very hot, muggy day hearing both my neighbor practicing her flute and my son whistling the song from Frozen while he plays computer games.
Recent drama aside, I had a wonderful spring. I watched the tall ones last season of high school baseball, I shared the bleachers with other players parents who have become friends and with who I’ve shared bleachers for years, some of them well over a decade. It was a perfect final chapter, I’m excited about my son going to college and us settling into a new normal, I’m excited about my new business venture, deeply moved by the help being offered, feeling more creative than I have in some time and more settled. Feeling like I am at a good point in my life, my soul feels calm and wise and very resilient. I feel like this is my time and with the new store I’m going to step up and own it. I will not let insecurity rule it, I will own it. I will make every decision without running around asking for advice and input, I finally realize that while there is always (much) more to be learned, I have to own my spot on this earth and I’ll stop worrying about what other people think, no more scurrying around like a worried little anxiety mouse. Time to trust my gut and my mind and my instincts and have confidence. I know more than I think I know and it’s time to own it. Integrity, respect, and strength can coexist, I’m putting my cards on the table. This is my time and cancer better not fuck it up.
Wednesday, April 23, 2014
Wile E. Coyote
Just as I’d forgotton about the magazine article, Rhode Island Monthly has hit the stands with their glossy covered “Best Doctors in Rhode Island” issue, with not a blurb, but a full page spread replete with giant picture of... me. And a bad picture at that. Even the few friends that have seen it have admitted, yeah, that is a really bad picture. I look wan, tired, and having a very bad hair day. I read the article once, there is one unfinished quote that leaves me a tiny bit uncomfortable, but all in all, it’s such a sweet, generous piece. None the less, I’ve read it once and that is that.
Just as I was feeling awkward about it, I got an email from a woman who said she was sitting in her doctors office today, reading the article while wearing a LuckyBird Studio necklace, which is my business name, and she too had just gone through breast cancer and was compelled to contact me. That alone, makes me glad I did it. To have connected with someone through a magazine page was a really cool feeling and I hope she will take me up on my offer to come to the studio for tea, because my story is told, I’d like to hear someone elses. Without a doubt there is a kinship among those that have heard the words “you have cancer”.
It’s been a year and a half since I finished treatment and two years since my surgery. While I still wrestle with the physical after effects, it seems like so much longer past, while at the same time, I can barely remember the simplicity of before, hazy, a bad dream. I feel like I can finally start my new life, my post-bad-marriage-life and I’m excited. So excited it makes me nervous, because my track record is poor. So many times I’ve thought that I’ve used up my quota of bad luck, but then when I get too comfy, the giant anvil falls from directly above a lá Wile E. Coyote. Maybe I’ve got to learn to dodge instead of standing still and letting it land squarely on my head, or maybe, at last, I really have used up my quota.
My next appointment with my oncologist is in July, I feel like I can only breathe freely until then, when hopefully he’ll give me another five month pass. Five more months, life in tiny increments is not enough, but it is what I get. I have never wanted to do more, never felt so energized, I can’t nearly fit in all the experiences I want to have in five months. I have to hope that the mind/body connection will see me through. That the happier I am, the more protected from harm I’ll be. We all grow cancer cells occasionally, but our bodies are built to remediate them. I think I had marriage cancer, childhood trauma cancer, it all built up and my system was just too stressed or maxed out to notice or bother with what was going on. I just have to hold on to the idea that a happy body, happy heart is as powerful as I need it to be. Trip planning is good too, because if I plan a trip in advance, surely, it is etched in stone and the universe won't let me lose my deposit.
Just as I was feeling awkward about it, I got an email from a woman who said she was sitting in her doctors office today, reading the article while wearing a LuckyBird Studio necklace, which is my business name, and she too had just gone through breast cancer and was compelled to contact me. That alone, makes me glad I did it. To have connected with someone through a magazine page was a really cool feeling and I hope she will take me up on my offer to come to the studio for tea, because my story is told, I’d like to hear someone elses. Without a doubt there is a kinship among those that have heard the words “you have cancer”.
It’s been a year and a half since I finished treatment and two years since my surgery. While I still wrestle with the physical after effects, it seems like so much longer past, while at the same time, I can barely remember the simplicity of before, hazy, a bad dream. I feel like I can finally start my new life, my post-bad-marriage-life and I’m excited. So excited it makes me nervous, because my track record is poor. So many times I’ve thought that I’ve used up my quota of bad luck, but then when I get too comfy, the giant anvil falls from directly above a lá Wile E. Coyote. Maybe I’ve got to learn to dodge instead of standing still and letting it land squarely on my head, or maybe, at last, I really have used up my quota.
My next appointment with my oncologist is in July, I feel like I can only breathe freely until then, when hopefully he’ll give me another five month pass. Five more months, life in tiny increments is not enough, but it is what I get. I have never wanted to do more, never felt so energized, I can’t nearly fit in all the experiences I want to have in five months. I have to hope that the mind/body connection will see me through. That the happier I am, the more protected from harm I’ll be. We all grow cancer cells occasionally, but our bodies are built to remediate them. I think I had marriage cancer, childhood trauma cancer, it all built up and my system was just too stressed or maxed out to notice or bother with what was going on. I just have to hold on to the idea that a happy body, happy heart is as powerful as I need it to be. Trip planning is good too, because if I plan a trip in advance, surely, it is etched in stone and the universe won't let me lose my deposit.
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