Wow. Long Time No Blog; the Big C Came To Visit

My journey to self-discovery took a side route unexpectedly. I was diagnosed with breast cancer and then spent 13 months trying to return to health and normalcy, whatever that may be. So much of this last year plus has been a haze, but some images stand out in my mind.

The Diagnosis: I was driving my entire family, husband, B., and my girls downtown (some 35 miles from our home) after a celebration dinner for H.'s and my 9th anniversary. A big deal. I only ever made it to 7 years in each of my prior marriages, so I was feeling I had one aspect of life down - marriage to a man I enjoy, respect and love. Check. Then the phone rang. And without even a moment to pull over, my doctor said I had cancer. Wham. And that little tiny lump I felt and that everyone said was no big deal suddenly was. A Big Deal. I pulled into a parking spot, fell out of the car in shock, and collapsed onto the sidewalk. Some people walked by and didn't even break stride. Thought I was a drunk, keening on the public walkway. I could see my kids' terrified faces through the front windshield as H. picked me up murmuring soothing things. And I knew I had to pull it together, but here I was, unable to walk, shaking uncontrollably. I was young. Healthy. BRCA 1 and 2 negative. And there were my two girls. I remember thinking I had passed on a death sentence to them, and how sad that thought made me. Then I had to drive home, because H. had a morning meeting and his car was at his office downtown. So I did. And as we pulled into the driveway, cold and snowy, B. said, "This has been a great day." And for him, it was true, because we had gone to dinner, had a nice time, and his autism protected him from feeling anything about my new state. And I said, yes, it was. A Good Day.

The Bad Days: Double mastectomy, recovery, chemotherapy, reconstruction, That was my spring and summer, fall and winter. I drove myself to chemo, because who wants to be in a room with bald, sick people for 6 hours every three weeks? I know I didn't. I remember the mound of warm blankets the nurses covered me with each time because I would get so cold from the infusions. Cold that could not be easily warmed. And chemo really, really stinks. It is killing you, aaaalllmoossstt, but not quite, so you can live. H. shaved my head. I refused to wear a wig or hats, because I didn't feel the need to cover my head in shame or try to hide the illness from others' eyes. I just embraced the bald, the differences, the fact I was now changed.

The Best Things: H made me laugh. And I laughed a lot. More than I cried, for I don't cry easily. And my girls did everything they could for me, even just lying down with me in bed when I was too tired and drugged out to move or mother. My Mother. And Father. They put their lives on hold and took on my life, for almost 9 months total, doing the things I couldn't do. All the years and miles I had put into getting away from them. Ironic. I couldn't have made it without them. So the complicated relationships became simpler, in the wake of the Cancer.

Today: The year anniversay of my diagnosis just passed. I had my last and longest reconstructive surgery on our 10th anniversary. I have been cut open, taken apart, lost parts of myself. And am emerging, rearranged, but back together. I have scars, literal and figurative, from this year, along with more perspective and gratitude.

But really, isn't that what we all experience each year, if we think about it?

When Does the Sorrow Ease?

I was cutting onions tonight, and thinking about my boy. The tears from the onions turned into real tears of sadness. He returned to us from a year with his father and step-mother; a bit of a vagrant-looking young man. Longish hair, shorts that didn't fit (indeed were so tight he could have posed as a young male prostitute), soiled clothing (they left B. to do his own laundry - disaster), ripped tennis shoes and sandals. It tore my heart. What did the child support go to, if not to care for B? How could they not see, hear, infer what he needs?

So - a quick trip to the stores, some $200 dollars and an appointment for a haircut later, he is looking cared for as I define it. And his half-sisters have been hugging him so much he's had to ask for breathing room. Cared for, absolutely.

But having him here again, a certain despondency has returned to me, an all too familiar emotion associated with my son. B. has a manic energy, indeed he cannot stop moving until asleep. He even paces while he eats, back and forth at the edge of the table, half-moon steps retraced over and over while he inhales his sustenance. I wish for him to feel calm, to sense the flavors in his food, to feel the relief that comes from easing your body into a space that holds loved ones, good tastes, plenty.

He cannot. He is not made, wired, formed, synaptically able to do so. "Just breathe," I admonish over and over, but I think I say this for me AND for him. Because I hold my breath, I tense when he is here. I see him as he is - the mania, the arrested emotional development, the inability to stop himself from obsessing over when we are leaving, what we will be doing, where we will be going. And I hear him as he talks to himself, dismissing his thoughts before he voices them, because he knows he's said it already and it just becomes annoying to everyone else. And I feel him, only two steps behind me all day long, so that if I turn around suddenly I'll bump into him. Just. Breathe. Stay. Calm.

I don't know if he longs to be like the other kids his age - he doesn't say. That would require a level of reflection and introspection he does not possess. But I see him hanging just on the outskirts of the other kids' interactions, like today at the pool where he recognized some of the other teens, and he hung onto the edge of the pool just out of their grouping. Was he hoping to be invited in, recognized, accepted? Or was it enough for him to just look on? I don't know. But it broke my heart into a million little, tiny pieces.

I've been to the "support" groups for other parents - it was mostly either a complaint-fest or an arena where one born-again whatever professed that they were so happy their child was afflicted with this syndrome, it had taught them so much. Bullshit. It sucks. For me, for him, for his father who ONLY has this child to parent, who will not know as I do that it IS a different experience with a neuro-typical child. I have never accepted; I have always mourned what is not to be. I would give a limb, an eye, whatever this world may ask to have him complete, whole, normal, the B. I dreamed of when he was inside my womb.

Perhaps if I accepted there would be no more sorrow for me. But I see. I hear. I cry. I love. And we go on.

Definitive definitions undone

Two posts in one day. After a year. What does that say? I have been mulling these things I write over in my head for months, unsolveable problems that haunt my dreams. Literally, I blog in my sleep, turning to writing pages in my mind to figure out emotion. How typical to analyze what I cannot understand in feeling.

So, what defines a friend? And when is a friend no longer truly one?

I thought I had this one down.

I have only a few real friends who know my history, my life, my thoughts, my feelings, that I deny feelings. I cherish them, respect them, tease them, celebrate their successes, mourn their losses, keep up with the mundane and profane of their individual lives, worry about them, check in on them, support them, remember their birthdays, their children's names, their anniversaries, their peculiarities that make them unique, endearing.

I do what I expect from them, in short. Because it is who I am. Because it is a symbiotic relationship - one in relation to another always needs and gives, in full or part, as required to keep the organism of the created bond alive.

But what if a friend stops? What if they never really started, but you let them in without realizing? Gave your heart, your friendship, and now it is too late? The caring is there, the distorted bond formed?

I don't have this down.

Out of Step

I have what is termed a "blended" family, his, mine, our kids. The term suggests we could be whirled together and come out a perfectly homogenized group, our cell structures broken down and joined into something new. But after almost nine years, I'm prepared to say it is as far from a whirlingly perfect, bonded unit as it ever was. And I don't understand, but am feeling defeat.

My step children are each interesting, bright, engaged, hard-working adults. One has married and started her own family, her two children just a few years apart from my youngest two girls. We should have much in common. But I'm out of step with my steps. And I'm not sure the dance was ever one I could have joined, as I came late to this particular party where the music stays the same.

What does it mean to be in a family but not OF a family?

I'm neither mother nor friend, not confidant nor enemy. I'm somewhere in the vast between that is tolerated, but mostly treated, even if unintentionally, as a non - non-important, non-person, non-family; not ME. I'm smiled at, talked a bit to, but it was over 6 years before my step-son asked if I had brothers or sisters. That is how little interest I hold. I am the Wife of the Dad. That is my place, my definition, my sum total. And I thought I'd eventually carve my place out in the family I joined, but my tools have failed to make a visible mark. I've failed to make a difference. And why escapes me.

Sure, they visit us; we visit them. There are pleasant times. But there is past that looms large in every visit, every conversation, especially those I don't participate in. They have a shared history, experiences I don't know and cannot judge. I respect that. I anticipated it. What I didn't anticipate: the fact that somehow their Father, in their beliefs and memories, failed them in their childhood and young adulthood, wasn't the person they wanted or needed him to be, and that impression, that mark, that wound has not healed - in fact it is exacerbated by me, and the family I started with him, since they see him acting as the Father they think they never had.

So out of step. Each of us, with the other.

Yet I know as I entered adulthood, I came to understand that my parents were people, flawed people with wounds that caused actions and emotions both hurtful and deeply damaging to me and their other children - but they did the best they could with the lessons they learned from their families, the tools they had at hand and chose to use. Were there resources they ignored? Yes. Were there things they could have done differently if they were more enlightened, more insightful, less gutted by their own losses and disappointments? Yes. But they didn't. And I forgave them and chose to take them as they are - as human beings with a past, a present and a future that still had dreams for them. A person entitled to be taken as they are today, not the person of 40 years ago, but the person who survived and lived those years, changed, shifted, learned, grew. Not entirely different, but significantly not the same.

I wish they could each get to this point with their own Dad. Realize they did have the core of him, even if the years have taught him, as they have taught me, patience, perspective, acceptance he didn't possess when young. And then maybe, just maybe their steps would fall into place with his, and then there would be a new dance, new memories, and new bond that extends to me, as a complete and full person with my own past, my own lessons, my own family, my own life that I have strived for, fought for, dreamed of, earned.

Word.

Words do not satisfy. I realize the irony in writing this, given I am hoping to express my thoughts in words, and that as an English major and attorney, I relied on words to earn a living. But they do not satisfy.

I have used words in my life to annoy, uplift, encourage, belittle, order, control, share, abscond, deter, praise, express, acquire, educate, manipulate, reveal, build, hurt, help, beg, give, defend. And more. But often, I use words to distance.

Perhaps this is because words are safe. They allow me to experience things viscerally. To further this visceral state, I have chosen mates who live in worlds of abstraction and words - engineer, attorney. My husband lives in his mind, turning over current events, theories, philosophy until he creates an often startling and complicated understanding of the world, his cases, his personal history, his relationship to others. He is brilliant. Sometimes whirlingly so.

But I have to remind him to pay attention to life that is happening right around him; kids, dogs, wife. Tucked into his chair, laptop ever in place, he is safe. He is not emotional. Although, inexplicably, he is more easily moved to tears than me, often just by one of the girls' silly songs or phrases.

Emotional equates to crazy for me. It stems from my mother, a deeply depressed woman whose personal losses led her to moodiness, sadness, a lashing out that came from nowhere I as a child could anticipate. I saw her as weak, a victim of her feelings and her husband's rage.

So, I am NOT emotional. Overtly, sustainably. Except I am. Deep inside; safe inside. Not many know it or have seen it. I don't often see it or know it myself.

But I feel the need for it. I long for it. Like I long for touch, which leads to emotion. Which I therefore avoid.

Today I went for a massage. It is in one facet the perfect touch. Comforting, returning me to inside my skin, my body, asking nothing in return. It makes me feel human again. But it is in the end, a bit disappointing. Because it lacks emotion. It is caring in a way, but not connecting.

And I remember connected. I remember touches that made me swoon; truly dizzying. In a hotel room in Arizona, the streets of Paris, a car in Tennessee. I remember emotion that spun my head, turned my heart, brought me to life. But it was not safe. And I never dallied. I return, but I never remain. Even though I wish (viscerally) I were capable of remaining.

Once a person said my daughter was sent to me to save me. Both my daughters have saved me. It is the one touch I do not swerve from, that of my child. It is the place of emotion I never leave. That of loving them, admiring them, learning them as they become. And they are full of emotion, drama, tears, bubbling laughter, raucous joy, rage at injustice. They are not afraid of feeling, staying in their state until it is exhausted or it exhausts them.

They are teaching me what it is to be free. Without words.

Letting Go - Lessons Relearned

If I were to believe in reincarnation, which I don't, I think the lesson I am learning in this lifetime is simply to let go. I was reminded of the pureness of this solution just yesterday.

To set the scene: My son, B., has the diagnoses of Pervasive Development Disorder - Not Otherwise Specified (NOS) and Bipolarism - NOS. Why they cannot specify these things is beyond me. I can be specific. It is at times a living h***, for him and those of us who live with him.

One of the symptoms of bipolarism is the hoarding of food and the craving of carbohydrates. I know this intellectually. I have read it in all the books, on all the websites. And he is living up to all the printed descriptions. He can inhale a dozen cookies in five minutes. Down an entire jar of Nutella in a half an hour with a spoon, while hiding in his bathroom. Eat an entire box of crackers if left alone for just a moment. In an effort to save him from the inevitable weight gain and the trauma and health problems it can bring, I have alarmed my home with motion detectors and locks on refridgerators. I have lectured, yelled, gotten angry, raged against the fact he steals with no remorse to satisfy his craving, hidden the goodies in my closet, in little used cabinets, in the basement. And still he finds it. And eats it.

Now I could stop buying/making these items. But the rest of us like cookies, bread, crackers, carbs, chips. Especially me. I once tried the Atkins diet, and thought I would murder someone.

Now my frustration could be all about B's health. But it isn't. I hate having my stuff stolen. It goes back to childhood for me, since we were poor and my parents did not purchase junk food. So me, always in love with the salty stuff, would save my babysitting money to buy crackers, chips and chip dip. Pricey foodstuffs when you are 12. I would dutifully mix my chip dip up, put it in a container, tape it shut, tape notes to it that said "DO NOT TAKE. C'S ONLY" and put it in the refridgerator. Next day, inevitably, one of my three older brothers would have eaten it all. Despite my note. Despite my hours of working to buy the crap. Now, in retrospect, it was probably good they ate this stuff and saved me from myself. They are all fat, and I am not. BUT, that's not the point. They stole my food. Without consequence.

So fast forward to now. It makes me crazy B steals my goodies. When I want the chocolate, I want it NOW. Not after I buy it again. Or bake it again. So it makes me angry. Unreasonably angry.

Then yesterday, I am walking with my husband on our way to our anniversary dinner. We have been discussing B, and my frustration. And very quietly, on a street muted by chilly air, about three feet away, my husband simply says, "You could just let it go. If it really is his disease, you could."

It was as if a brick hit me. It had simply never occurred to me, this simplest of answers. I can set up an entire motion-detecting alarm system that would make the FBI proud, but this solution escaped me - and my system.

And then I realized I could. Let. it. go. Like so many other things I could not fix in my life. Marriages. A friendship of 27 years with a woman who became ultra-Christian and ultra-judgmental (I think they go together.) My job. My pain from childhood.

Not to forget, not to cease to acknowledge the truth of the events. But just to let the emotion around it go, cease, float away, leave me behind and free.

And so I did. I'm sure I will lapse, forget again to keep my hands open in life so that I do not cling to things that I cannot hold, fix, control. But for today, I am. Letting. go.

And I said to B. when I got home that I was sorry. And he said he could control himself a little more than he does. And he would try. And so will I. A mutual forgiveness of each other's needs there in the darkened stairwell.

My Life ... Without Pictures

If you are wondering what the title of my blog means, it is a concept I have often thought about, and was recently reminded about because I joined FaceBook and have been looking at photos of the people who are befriending me (mostly high school companions). I often look at people's pictures and wonder if they are accurate. I mean, are they smiling because they are truly happy? Or because the camera is there, and we've been trained since toddlerhood to "smile" for it? I can remember two photo shoots my family had taken when I was young. One was for my grandparents 40th wedding anniversary. (They celebrated their 40th instead of their 50th, because they were not sure they would live to celebrate 50 years. They made it to 60+.) What the photo shows: Church photo style, meaning everyone from the waist up against a blue background: Five kids, ages 12 to 2. Three boys, the oldest with longish hair popular in the seventies. Everyone has front teeth that are a bit to big for their mouths. (We grew into them.) Two girls, matching pink eyelet dresses sewn by their mother - one fair skinned with blonde hair in a bun on top of her head, the other obviously dark skinned with curly brown hair in a bun on top. A Father with eyes that turn down at the corners. A Mother with black hair cropped short, slim, also in a handmade dress. What the photo doesn't show: The Mother and Father had an enormous fight on the drive to the party (a common event - the fight, not the party) that ended with the Father threatening to hit the Mother with the back of his hand over the backseat (she always sat in the back seat, said the boys needed the legroom) if she didn't shut up. The girls crying quietly, the blonde one dying a little more inside. The boys silent. The fact that while making the dresses the Mother was short-tempered, yelling, jabbing pins accidently into the girls during the fittings because of her frustration. Crying while sewing into the night at her machine on the kitchen table.

Second photo, many years later: Bookshelves in the background at some professional photographers office. Same kids, however now the oldest boy is grown, married and has a two year old daughter with pigtails. The second oldest boy is engaged, and his fiancee is with us. Third boy in high school, as is the blonde girl. Brown haired girl is now much heavier, but has beautiful skin and eyes. Father, hair thinned, more wrinkles around the down-turned eyes. Mother, hair permed to a frizz, frozen smile on face. Everyone smiling. What the photo doesn't show: Mother and Father had huge row on way to photographer, photographer somehow wasn't performing to please Mother, who has saved grocery money for months to pay for this pleasure. Mother crying before, during and after photo shoot. Father furious. Not speaking before, during of after photo shoot, except for snide comments thrown to Mother before, during and after.

Shoot.

One of many times the photos from an event didn't match the events of the event in my life. So I am sceptical of the photos on my friends' websites and facebook sites. What really does their picture capture? Something someone wished to create, or a reality? A conjured family moment where everyone is smiling and the real hurt and suffering isn't showing? Or a real family that is really happy?

The only photos I love are those I capture when the person or object doesn't know they are having their picture taken. Those are the only pictures that seem true to me. My toddler happily complies; my six year old notices the camera and pastes on a smile. So I have to be sneakier to capture her essence.

So this blog is meant to be about my life... without pictures created; just the truth. Even if I have to sneak up on it.