Tuesday, April 30, 2013

Full of Grace

1. A good oncology report.

2.  Finding new erogenous zones.

3.  Spending Saturday at the lake replacing the decrepit kitchen floor.  It feels so good to have the energy to work again.

4.  Sunday and the temperature finally warmed up.  Loaded the Beach Boys on the iPod, stripped, and laid outside to soak up the rays.   Ahhhhhhh. . . there's nothing better than the feel of the sun on my skin.

5.  Planning the next trip to the mountains - which is almost as much fun as the trip itself.

6. And for e, a picture of my bike.  I also have a Diamond Back road bike that I used for long rides, but I think 50+ mile treks are now behind me.  This bike usually has a milk crate strapped on the back for grocery store runs and other errands.  (And I am thinking about that little bike motor you had mentioned : )

Friday, April 26, 2013


Survivor.  It is a word I have heard a lot of lately.   A psychic telling me I am a survivor.  And not only that, but that I should teach others how to be survivors.  I just received an invitation to a luncheon for breast cancer survivors.  And the reporting of the Boston bombings and other recent horrific events  - how many dead, how many survivors.

Each time I hear it, I think about that word. Survivor.

The dictionary defines to survive as:

1. to remain alive or in existence, live on
2. to continue to function or prosper

I wonder.

I think about those runners and how much dedication and passion it must take to be eligible to run the Boston marathon.   And then, in a split second, they lost their legs.  Yes, they will survive.  Their bodies will live on.  Some will fade into depression but many will probably get prosthetics and work tortuously hard to be able to run again, such is their passion.  Yet something very important has died.   This I know.

National Coalition for Cancer Survivorship pioneered the definition of survivor as being any person diagnosed with cancer, from the time of initial diagnosis until his or her death. Among health professionals, views differ as to when a person with cancer becomes a survivor. Many consider a person to be a survivor from the moment of diagnosis; in recent years, this view has become increasingly prevalent. Some, however, think that a person with a cancer diagnosis cannot be considered a survivor until he or she completes initial treatment. Others believe a person with cancer can be considered a survivor if he or she lives 5 years beyond diagnosis. Still others believe survivorship begins at some other point after diagnosis or treatment.  A considerable number of people with a cancer history maintain that they will have survived cancer if they die from another cause.*

Recent feminist culture has shifted labeling people who have experienced rape from rape victim to rape survivor.  The definition and meaning of survivor seems to carry more empowerment then the word victim.   Yet I don’t personally know one person who has experienced rape who would define themselves as a survivor.   Or empowered.   Too much of the soul has died.

The word survivor seems to emphasize merely being alive after diagnosis/trauma.  Is that enough?  To merely be alive?   What about the quality of life?  There is a big difference between surviving and thriving.  This I know too.

I was first diagnosed with breast cancer in 2000.  After five years I did consider myself a survivor. Physically I felt great and had no limitations.   But then the cancer returned and brought me back to reality.  I am now a year out from my last diagnosis.   Most of me survived, but my breasts did not.   There have also been many physical and emotional issues that I have not overcome.   Survivor?  I guess time will tell.  Thriver?  I’m working on it.

I would agree that my body survived the violence that occurred around my rape.   That was a very painful struggle and I have recuperated from my physical injuries for the most part.   I survived it.  Daphne did not.  Decades later it is still a struggle for me.

I do not consider myself a rape survivor.  Yes, I have moved on.  I have made a very nice life for myself and have been able to enjoy an intimate relationship.  I function relatively well in most situations.    But I know what I have lost.   So much of the person I was did not survive and is gone to me forever.   I mourn that. Even after years of therapy, I sometimes don’t recognize myself in the mirror.  I do not feel safe anywhere other than my own home and often decline other opportunities.  I continue to put too much energy into avoiding things that are triggers thereby allowing my world to be smaller.    I have lost relationships I care about because of my boundary/safety/trust issues.  Each time I experience a new death.   And in each instance I see where I lose and the rapists win.  And it brings a new guilt and shame to me.   Wash, rinse, repeat.

So, I come back to this idea of teaching people how to survive.   I like the idea of it, I really do.  But can I really teach someone how to be a survivor when I don't even consider myself a survivor?   I don’t know. Some basic survival skills maybe.  I could certainly share some strategies I've learned to deal with anxiety and fear.   I have come a long way on that journey, although there will always be more to conquer.

More accurately, I think, can I help someone to live as well as possible, despite the limitations and disability and loss?   Maybe.  A little.  I am still learning myself.  Everyday.  I can certainly share those things that have gotten me through difficult times.  I can talk about those things that connect me with powers greater than myself.   How I try to feed my wounded soul daily.  How I try to keep myself pointed in the direction I want to be going.  How I will always be hopeful that love wins.

Still, learning to live after trauma is a very personal journey, I think.  What connects with me, will not connect with others.   And so I think the best I can do is to share my stories and listen to other folks stories.   Here and in other support groups.   And hopefully, we will all learn to thrive -  from each other, and because of each other - despite our losses.  

*.  SOURCE: President’s Cancer Panel (2004b).

Tuesday, April 23, 2013

Full of Grace

1.  My bike, back from the shop, all tuned up and ready to roll.

2.  Watching Beanie dance at a charity dance recital and still being able to envision her as a 3 year old when she first began lessons.

3.  Being on a college campus for 4/20.  Oh to be young . . .

4.  Daffodils.  Finally!  This has been a long winter here in the northeast (nighttime temps are still below freezing.)  The daffodils are the first flowers in my garden to bloom and mark the beginning of always having fresh cut flowers in the house. 

5.  A live cam of a red tailed hawk nest where there are fledgings currently hatching.   This site has been mildly distracting me for weeks but the babies now have me permanently hooked.  If you catch it while they are feeding, kiss any productivity goodbye.

Thursday, April 18, 2013

The Psychic

First, I have to say that I am cynical of psychics, astrology, etc. I do think that some people are more in tune to metaphysical phenomena than others, much like I am more in tune to nature than others. But do I really think that people can see the future? No, not really. Yet I can’t totally rule it out either. Mostly I think that some people can be very perceptive and notice visual clues, and can make high probability guesses based on those clues. So it was with that mostly non-believing, but very curious, attitude that I sought out a psychic.

My first step was to consult with Em who is very knowledgeable of the world of astrology and such. She gave me a name, and a description and a location where psychics hang out in New Orleans. When I got to the place, there were five psychics set up with their tables but no one matched Em’s description. But I figured this was my one chance, so while Martha went into yet another museum, I sat and watched these five people trying to discern whom to try.

I quickly ruled out three of the people just on general negative vibes. But there was one woman who looked very friendly and one man, dressed entirely in black, who looked like he rode with Hell’s Angels - but the kind of guy who would stop and wait for a family of ducklings to cross the road. Both of them had customers and so I sat in the park for a while and just watched how they interacted.

I finally decided on the man, which surprised even me, and approached him when his table was free. I first asked how much it would cost and he asked me to sit down. There were three chairs around the round table and I sat with one empty chair between us. He immediately asked me to move next to him which I did. Then he made eye contact for longer than I felt comfortable with and said,

“You are a survivor”

“well, that’s kind of obvious” I thought as my mind immediately envisioned my very flat chest.

but before I could even finish that thought, he said “No, not just the breast cancer. You are a survivor. You have experienced true hell and come back.”

I didn’t say anything but I started thinking about how many times people have told me that they see sadness in my eyes.  Was he just guessing or is it that obvious???

He asked me to put my hands on the table, looked at them, covered them with his and continued,

“You are a survivor and you have done it alone.”

I started to protest that I’ve always had a lot of support in my life but he interrupted me -

“I don’t mean you didn’t have support. But what you have gone through - you did it alone.  And you are still alone with it.  You will always be alone with it.”

Hmmmmm.   He might have said more but I was still thinking about the alone thing and not listening.

Then he switched gears and said “you are married”

and I thought no shit Sherlock, I do wear a commitment ring, but you are wrong since I am not married.

But before I finished that thought he questioned, “but not a traditional marriage?”

Good guess?

I did volunteer that my partner was a woman and we chatted a little about the ridiculousness of each state having their own rules about it. Then he said,

“She is your protector, the strength of the relationship. You are her warmth.  She is the yang to your yin. You will be together until the end.”

I was good with that. 

Then he asked me if I was Catholic and I said no.  Shouldn't he know that?  He choose a deck of tarot cards and asked me to shuffle them.  Are there different decks for different religions?  Of course, all my cynicism returned thinking “my whole life is determined by a shuffle of a deck?”

I don’t know the name of the card he first turned up but he said that I was a lover of animals. True. He said that I like animals a lot better than I like people. True a lot of the time. That I could be the woman with 57 rescue animals.  So very true.  Then he went off about some story about the rats in New Orleans that eat cement.

My next card was the fool. Great.

He said, “someone has just played you for a fool, or you felt like a fool.” Which was weird because I did just say that to someone - that I felt foolish for believing  and trusting them.  But then he went on saying that the fool represents a journey I am about to take without knowing what the dangers are, which he said as more of a question.  But I didn't say anything so he continued.

He turned over the last card but I don’t remember what it was. I was still thinking about what journey I was about to take, what danger is ahead . . . maybe I shouldn’t have stopped the chemo . . . I wasn’t flying straight home, but taking a side trip through a very conservative state . . . My mind just ping ponging to several possibilities . . .

Then he asked me what I do for a living and I said I was a city planner.

He shook his head as if gravely disappointed.

“What???   I said. I love my job.”

He said “that is coming to an end. You have a much higher calling. You need to be a teacher.”

WTF?   I laughed and said “I am no teacher.” I quickly had flashbacks to trying to teach my children to play piano. Disaster. Or trying to help them with their math homework. Fiasco. Even when I was asked to teach a college class, I only did it as a team. Someone else did all the lecturing.  I sat there shaking my head, adamant, “No, I am too much an introvert. I have no patience for it. I could never be a teacher.”

He sat there patiently, like a parent waiting on a petulant child and again said “you need to teach others how to be survivors.”




And he just sat there smiling at me like the Cheshire Cat.  Like he knew he had hit the right chord.

Our time was up and I thanked and paid the man. Then, as I was about to walk away he said with a huge smile,

“By the way, you have a very long lifeline.”

I nodded my thanks and walked away, smiling and laughing to myself.

Tuesday, April 16, 2013

Full of Grace

1.  Awarding the second annual Daphne college scholarship award (now substantially funded by her mother)

While this is a great joy for me, it is also bittersweet when faced with how many truly promising students there are and the only thing holding them back is money.  There has got to be a better way.

2.  That Beanie drove over 4 hours to visit her sister on National Sibling's Day.   They are best friends and I do hope that they will always remain this close.

3.  That Beanie has reported that Peachie's new boyfriend is "so friggin' nice." 

4.  The clear head and great night's sleep that comes after a day of  hard, productive, physical labor.

5.  That all runners and spectators and residents we knew in Boston reported back safe, although understandably quite shaken.   Heartfelt prayers for those who were impacted. 

Monday, April 15, 2013

Prelude to a Psychic

Before I tell the story of seeing a psychic in New Orleans, I thought I should first relate what was happening in my life, and where my head was at prior to that experience so you understand why, what he told me, has opened something new in me.

Up until two years ago, I was always very active.  I was very connected to the earth and would be outside, hiking, biking, backpacking, planting or building something.   Then I messed up my left knee, which required surgery.   The surgery was successful in that the knee was no longer painful, but it took a long time to get the flexibility and strength back in it.  Then I was diagnosed with breast cancer (for the second time) and had a double mastectomy.   That surgery went well but it took a long time to get my upper body strength and range of motion back.  Since my cancer was estrogen triggered, I began a hormone therapy to kill all the estrogen in my body.  That gave me wicked hot flashes and night sweats.  It also slowly began affecting my joints.  Within months everything hurt and I often needed help just to stand up out of a chair. 

Just when I thought I was recovered from the mastectomy, another spot of cancer was found on my chest wall, requiring yet another surgery and then radiation.   That surgery was a tough one and the six weeks of radiation just wiped me out.   When I finally finished with that, I tore my other knee and had one more successful surgery but a slow rehab.  

Meanwhile without being able to do all the physical things I need to do to ward off anxiety, my PTSD started crawling right back.   Emotionally I was going down hill quickly and falling back into old patterns of fear and withdrawal.

Then the genetic testing of the second cancer came back with a strong possibility of recurrence and my oncologists recommended an oral chemo – just to make sure we got every last cancer cell.   The first few weeks I was doing fine – noticing a growing fatigue but otherwise okay.  And then I hit a wall.  My body hit the proverbial last straw and began rejecting the meds in a big way.  Vomiting and diarrhea became violent.   Sick didn’t come close to describing how I felt.  Until one night I was so weak, I literally shat the bed.   Martha helped me to the bathroom and then left me there to go clean up.   Feeling so miserable I couldn’t even sit on the john, I lay down on the bathroom floor, totally spent, and said “no more.”  

And at this point I have to say how much I admire those folks who have no choice but to go through it.  Multiple times a day I think of them and send gentle, healing vibes into the universe.  

I decided that I would take my chances and stop putting all the poisons and other drugs into my system.   And I really started to think about my life priorities.   Martha asked if I had a bucket list and all I could come up with was that I would like to see New Orleans, the grounds at Biltmore, and to climb the last three mountains of the 46 high peaks in the Adirondacks that I had not topped.   (two items complete, the third will hopefully happen in May) 

I realized when I looked at that list, that I was already a very happy person.   I have a life many people would envy – a fun, long term, supportive relationship with my best friend, healthy, loving kids, a career I love that is deeply very satisfying, amazing friends, many opportunities and abilities to help others, and a strong spiritual connection to the beauty and energy in the universe.   I really want for nothing.  

It didn’t take long before my body began bouncing back after stopping the meds.  Everyday I felt a little stronger.   The vomiting and diarrhea subsided and I felt more confident going out.   My joints started loosening up.   I began walking again and started, slowly, back to the gym.  And the more I could do physically, the better I felt emotionally.     Today my body is feeling pretty good  (for my age : )

But I also realized that I didn’t want to waste whatever precious time I may have left and kept thinking about what the last chapter of my life should look like.   And that is when I thought it would be fun to consult a psychic.  And what better place than in New Orleans . . .

Friday, April 12, 2013

Bumper Stickers

I don’t drive very much. I have tried to arrange my life so I can walk, or bike, to almost everything I need. So maybe I just never noticed them.

Last week I flew to Raleigh North Carolina, rented a car, and drove to Asheville to see the Olmsted designed grounds at Biltmore. Although I would never drive through the Carolinas with New York plates (I’ve heard far too many horror stories) I figured I’d be all right with my rented NC car. It was a 4 hour drive.

You would think I would focus on the lovely backdrop of the Blue Ridge Mountains. But no. Mostly I noticed bumper stickers. Seems like it is common practice to wear your politics and labels and opinions on your car there.* Some cars were literally papered in stickers. And nice cars too - not just stickers to cover a rust spot, like we did in our teens. (Do they get rust spots in the south? )

I saw a lot of Obama and Romney campaign stickers. No comments, just their names. Many similar stickers that I assumed were for local politicians. A lot of peace signs and fish symbols. And quite a few supporting a sport’s teams. Generally labels rather than opinions.

What really did surprise me though was the open vileness of some of the messages:

Gay rights? Gays have the right to die. (with bible verse I couldn’t read)

I sunk down lower in my seat

If I had known this I would have picked my own cotton (along with a picture of the Confederate flag)

I learned everything I need to know about evolution from the Holocaust

and on one truck -

The Bro and his Ho have got to go
Don’t Re-Nig in 2012

Seriously? People place these statements on their vehicles? Of course, I realized that if someone had said those things in a conversation, I would have been able to question them on their views. But a bumper sticker does not allow for public debate. And maybe that’s why people do it.

In fairness to North Carolinians, I also saw more liberal leaning stickers:
Why are Republicans so afraid of women?
I’m too poor to vote Republican.
And a many I support marriage equality slogans

So when I got home I started looking for bumper stickers around where I live. Not a one. Literally. A couple of NY Yankees decals. Window decals from colleges. But not one sticker that announced a political position or any other opinion. So I started to research the use of bumper stickers and found this:

Colorado State University researchers have recently concluded a study on driver behavior revealing something that may or may not be surprising to you: drivers who personalize their cars with bumper stickers, custom plates and other such markings are likely to be more aggressive and confrontational out on the road. It's all about marking your territory, say the CSU eggheads. When people use their rear bumper to, say, advertise who they voted for in the last three presidential elections (along with every associated platform issue), or brag about how smart their precious kids are, it's really the adhesive-based equivalent of what that next-door-neighbor's dog does when he lifts his leg on your gardenias.

As a side note, I was driving once with my sister who noted a window sticker that said:
My child is an honor student at...
Which she then interpreted as:  "My child is an effing nerd and will probably never laid."
Her equivalent of pissing back, I suppose.

I have such an issue when people have no scruples about publicly shaming, insulting and anonymously calling other people names via social media.  I suppose that bumper stickers were the precursor to the present day anonymous media that gives anyone a bully pulpit.   I should probably not be surprised that folks seem to have no reservations about sharing their opinions on their vehicles.  Bumper stickers, like all labels, are about declaration, not dialogue.

One writer observed, rather tongue in cheek:

"This topic isn't so important to me that I'm unwilling to sum up my views and air them to strangers in one sentence or less."

Which made me laugh.

Another writer wrote on the use of his bumper sticker:

I want nothing more than to piss off conservatives and this allows me to do so without having to actually, you know, confront anyone face to face.

And I think that comes close to the truth and what I find myself constantly bemoaning in today’s social media age.  I respect anyone’s right to have an opinion.  Even the really ugly opinions.  But at least have the courage to allow dialogue.

I share my politics, religion, position on reproductive rights, opinions on gun control, the death penalty, etc., with friends and family. I might even write an occasional blog post that may generate some controversy. And then conversation ensues. (Often heated around our dinner table). Or people are free to debate it in the comments, which I have never moderated. And each time I learn something about other’s perspectives. I may not agree, I may never agree, but I do become more able to understand why another person has such different view than mine.

But perhaps people are happy to be reduced to labels and stickers. It avoids having to actually do any of the work.  Like another writer observed:

Decorating your car with slogans and images is a lot like decorating your middle school locker. It’s not a reflection of who you are as much as it is a reflection of who you wish you were.

Which reminded me of another sticker I saw -

I am a Christian. My bumper sticker says so.

Unfortunately, just saying it, does not make it so.

* I would really love to know if bumper stickers are a regional thing. If you are so inclined would you drop me a note about the use of bumper stickers where you live?  Do you have any, and why?

Tuesday, April 9, 2013

Full of Grace

1.  Finally feeling well enough for a romantic vacation to New Orleans - our first vacation without kids in 21 years.   Oh yeah.  THAT kind of romantic.

2. Beignets and cafe au lait.  Every day.  And bread pudding and pralines and sweet potato casseroles and barbeque shrimp and wow, I need to lose a few pounds.  With a special thanks to Grandmere Mimi for her exceptional local advice and restaurant recommendations.

3.  Walt Disney, Frederick Law Olmsed and John Muir whose visionary ideas for development, landscape design and open space preservation formed the foundations of my planning education and made me fall in love with my career.

4.  Today is free Ben & Jerry's ice cream cone day!  Oh yes, I will be there.

5.  My first attempts at growing plants from seed in my basement.   Watching each plant spring gently from the soil made me absolutely giddy.    Another couple of weeks and I should be able to transplant outside.   I've already told Martha that I'm going to need MUCH more space next year.

Saturday, April 6, 2013

Coming Home

I began this blog talking about the hypocrisy I experienced at a "welcoming" church.  It then enabled me to come out as a rape and violence survivor, process the hell of slogging through PTSD therapy, and share my breast cancer journey. I've received tremendous support through it all.
Then I allowed some people to take away my sense of safety in telling those stories and I ran away from this site.
But I am coming home. Here.
Here I want to finish those stories because they are mine.  And they are many others too. 
I am not afraid.  And I am feeling triumphant.
I just enjoyed a wonderful vacation with Martha to the very gay friendly New Orleans where I had an extraordinary epiphany, the details of which will be the subject of many of my next posts.
I am currently winding my way home - on a quick "bucket list" trip to North Carolina to visit the Olmstead designed landscape at Biltmore,  the last of his major works that I have not seen.  
And then I will be coming home.  Home to family.   Home to friends.   And home to this space. . .  
. . . full of grace and full of happy.
I hope that you will join me.