The Last Freedom - To Choose... To Choose

I copied this from Victor Frankl “Man’s Search for Meaning” for Cristina because she just thinks that she "survived" cancer... she doesn't fully realize it's not whether you survive or not... it's HOW you do it...

This excerpt is from the book I told you about… He was a famous psychoanalyst and concentration camp survivor of several concentration camps. The only family of his that survived was his sister. He lost everyone else.

This is what he writes about being in the concentration camps: where it is in bold are the parts that made me think of you and all the ways you maintained your grace, dignity, humor, style, class and indomitable spirit, including just these few examples: how you thanked everyone all the time, found humor, and LEAPED on the fact that you ate 3 more string beans that day…

* * * * *

“…But what about human liberty? Is there no spiritual freedom in regard to behavior and reaction to any given surroundings? Is that theory true which would have us believe that man is no more than a product of many conditional and environmental factors – be they of a biological, psychological or sociological nature? Is man but an accidental product of these? Most important, do the prisoners’ reactions to the singular world of the concentration camp prove that man cannot escape the influences of his surroundings? Does man have no choice of action in the face of such circumstances?

We can answer these questions from experience as well as on principle. The experiences of camp life show that man does have a choice of action. There were enough examples, often of a heroic nature, which proved that apathy could be overcome, irritability suppressed. Man can preserve a vestige of spiritual freedom, of independence of mind, even in such terrible conditions of psychic and physical stress.

We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may be have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms – to choose one’s attitude in any given set of circumstances, to choose one’s own way.

And there were always choices to make. Every day, every hour, offered the opportunity to make a decision, a decision which determined whether you would or would not submit to those powers which threatened to rob you of your very self, your inner freedom… in the final analysis it becomes clear that the sort of person the prisoner became was the result of an inner decision, and not the result of camp influence alone. Fundamentally, therefore, any man can, even under such circumstances, decide what shall become of him – mentally and spiritually. He can retain his human dignity even in a concentration camp. Dostoevski once said, “There is only one thing that I dread: not to be worthy of my sufferings.” These words frequently came to my mind after I became acquainted with those martyrs whose behavior in camp, whose suffering and death, bore witness to the fact that the last inner freedom cannot be lost. It can be said that they were worthy of their sufferings; the way they bore their suffering was a genuine inner achievement. It is this spiritual freedom – which cannot be taken away – that makes life meaningful and purposeful.

Non Verbal Communication - Nothing Else to Say!

Being a dancer and writer means I spend a great deal of time NOT talking. I also learned through my daughter's illness that sometimes there just ARE no words! I think people really talk too much. I think a lot of that is to keep ourselves distracted from what? from whom? maybe ourselves!

If we're always talking, we're not always BEING! I would love to take a walk with someone, but not have to talk, or drive in a car, or sit in a restaurant and NOT talk. Or not talk very much. It's certainly not that I have anything against conversation, but I really have a hard time with constant chit, chat, chit, chat, chit, chat! Going out in the street... everyone is on a cell phone, or plugged into music or talk radio. You can see two people together sitting in a restaurant... each of them talking to someone else on a cell phone.

Maybe people are afraid to be alone... alone with their thoughts... their feelings... themselves.

This blog is gonna have art... non verbal communication... can you handle it?

A Grateful Heart is a Happy Heart

One of the "benefits" of being sick so long (and unable to sleep much), is that I've gotten a chance to do a lot of thinking and "pondering." Because of some miserable childhood stuff, I tend to think about all the things I DON'T have, all the shortcomings I DO have... This keeps me living my life in the past. Almost like a child who never quite grew up.

What's added to this has been my daughter's illness and recovery where we have been very dependent for a very long time on the kindness of others. While, of course, I have been and always will be so grateful for everything people have done for us, it wasn't until last night as I was laying in bed that the full impact of how I think and feel really hit me.

I have been so humiliated and embarrassed for being so dependent on peoples' kindness for so long, I've lost sight of the fact of how grateful I really am. How there is NO WAY either Cristina or I would be alive (and in some small measure still sane) without such kindness for such a long time. It was like one of those huge "AHA" moments when you realize that you're whole focus has been on the wrong thing. The "deprivation," not the "abundance."

I think about all the money people raised to help us out... the clothing we got, the furniture, the people who decorated, brought over food, listened to my constant pain, showed up at the hospital and house. The people who NEVER left us, especially in the face of nothing but bad news for many years. The people celebrated every victory... no matter how small and listened to my hysterical ptsd rants. The "strangers" who sent money, cards, prayers. The healers who kept charging less and less as money kept running out. The healers who helped saved Cristina's life.

My heart did a major "flip flop" last night as I thought that i am truly my own worst enemy! not my daughter's cancer, not my cancer, not that I'm financially destroyed. Those are not my enemies. It's my thoughts about my life that is the worst. As I lay in bed, it's my own negative, irrational thinking that keeps me down. It also negates the love, kindness and compassion that I have been surrounded with for all these years.

I celebrate now! My "New Year's Resolution" is to be Grateful for Everything. To welcome whatever life has in store for me with open arms and a grateful heart. Accept life just as it is. Knowing that I truly am never alone... unconditionally loved... from everywhere... all the time...

My heart glows!

Beauty Feeds the Soul, Heart and Mind

One of the most difficult things during my daughter's illness and recovery was the absolute misery and suffering that filled my eyes. Nothing like a transplant unit and a hospital to see very little other than pain and suffering. My daughter's room faced the back of the hospital. The "view" from her window was the back of the hospital and a bunch of gray pipes, etc. There was virtually no natural light. For approximately 20 minutes on a sunny day, there would be one stream of light that would come into her room on the window sill.

It was right in that place that I put a big bouquet of silk flowers. All around the room I put photos of family and friends so no matter where we looked, we were surrounded by love. I would go outside sometimes and sit in the sun and just look around at the green grass, sunshine, flowers, listen to the birds. I would very consciously take in as much beauty as I could to bring back to her. I did that a lot with dancing also. Store up all the energy, beauty and joy to bring back to her whether she was at home or at the hospital.

I've been reading some stuff that says that Beauty increases the feel good hormones serotonin and increases endorphins. I didn't know it at the time, but probably doing that is what helped save both of our lives. Even in the concentration camps, at times of war, during slavery... all the hideous things people have done to each other, people have had the resilience to dance, sing, create.

I believe that it is Art (in all its forms) that makes life liveable. No matter the circumstances, bring Beauty into your life. That's why the artwork I do here is so fun. I love looking at it, sharing it and it feeds my soul.

New Year... New Me!

As the New Year approaches, I think about what I've learned over the last year... and what I haven't yet learned. Having a very bad childhood (well, really, no childhood at all) definitely has had its effect on me! Some of the effect has been very "negative" and also very "positive." On one hand, I have absolutely no idea where or how I learned how to "go" in the world. I can't remember my mother ever teaching me anything. My father did some sports stuff with me, but pretty much everything I did and WAS, was not acceptable to them. Nothing was ever good enough or deserved praise or support.

I was literally and figuratively abandoned by them at a very young age and pretty much had to raise myself. Having my daughter, in many ways, was my "childhood." I LOVED being a mother. Cristina is also so easy to love, so lovable, so enjoyable. While I was very responsible, we also played a lot. I can get and be REALLY silly! We wrestled, and ran around together, I swung on the swing, see sawed on the see saw, played silly games (which Cristina always won) climbed the monkey bars, giggled a lot, took long walks. Cristina was the most fun person to be around. She was the perfect combination of loving to play, and also listening to adult/friends talking. I feel very blessed to be her mom.

It's like everything my parents did, I did the opposite. Now I need to learn to take pride in myself, know that I deserve contentment, that I am unconditionally loved and that I'm really quite a great person! Not pay attention to the "demons" in my head that are always there, intruding in the present, making me feel like that abandoned child I WAS!

But that was then... this is NOW! It's just to LIVE it!

Oil Pulling - Huh?

About a week ago, I noticed a white coating on my tongue. Didn't think that looked right so I "googled" "white coating on tongue." Much to my surprise this thing called "oil pulling" came up. Since I have a "gift" for finding things... I checked it out. Turns out that "oil pulling" is also an Ayurvedic healing method that has been used for centuries to heal all types of maladies. Deepak Chopra has also talked about this in his book Perfect Health. It appears that the tongue (much like the ears) reflect the entire body. I'm figuring... what can it hurt? I'm using cold pressed Sesame Oil. I IMMEDIATELY noticed that my gums, which have been bleeding a lot, stopped after the first "pull." I'm not sure what else it's doing... I'm still sick. But considering how sick I am, I'm looking pretty good. I'm really surprised. I can't wait to see what happens once I'm better. The use of the sesame oil is supposed to really help the skin. I'm getting younger every day!!!!

Lots of Time to Think and Be

One of the "benefits" of being sick is I've gotten to spend a lot of time just "being." My brain has not been functioning other than to think about how tired and bored I am and trying to accept that right now I'm sick and that's just the way it is.


Hard to believe how hard it is just to accept things AS THEY ARE! I want to go out, have my life, write, dance. It's HOLIDAY time after all! But, alas, I have to lay down much of the time. My energy level is non-existent. I do a little of something, then lay down...


Drinking a lot of green tea (for the immune system), honey, lemon, pushing fluids. Not eating very much. Great for the figure, but not exactly how I would have wanted to lose weight. Miss dancing SO MUCH! That's the hardest, not to be able to dance. Maybe Sunday night. Even for a little while. Gotta TWIRL!!!!


That'll make me feel better or at least I'll get so dizzy I won't care how I feel!

I wish the Flu would just Fly (Flu) Away

Very little has changed. Still very sick. The doctor misdiagnosed me... He said I had a sinus infection and gastritis. WRONG! It's the flu. It would be a really novel idea for doctors to actually PUT TOGETHER the body rather than see it is all these separate "entitities." If there's a problem in your lungs, they give you something for that. If there's something with your stomach, they give you something for that. Rather than seeing the body as a whole. Had this doctor actually used his brain, he would have realized that some flus start in the stomach and move to congestion. Especially considering that my body hurt all over and my fatigue was FAR from the "normal" kind of fatigue from a sinus infection.

Some of the problem is that doctors (these days) take all of 4 minutes for an exam and then quickly prescribe whatever medication SEEMS logical/practical or one that a pharmaceutical recommended and then move on to their next patient.

If I sound very annoyed, it' because I am... I was put on antibiotics (that are doing no good because that doesn't work for flu) and told to get Prevacid for my stomach (Prevacid is VERY expensive) and also wouldn't have done anything to help my stomach and would have, in fact, probably hurt it because Prevacid stops your stomach from producing digestive acids. Now that would have been a really big help to me (NOT!). Some of the reason I'm so annoyed is because of years of my daughter's illness and recovery, I'm tired of misdiagnoses, wrong medications and just the general corporatization of the medical profession.

Is there a REAL doctor in the house?

I've been sick as s****... sick can be

I got the flu... have been able to do nothing but lay in bed and be miserable... wish I could get a whole new body. The only good thing that's come out of being sick is that I've lost some weight! Can now fit into my skinny jeans, if I ever get well enough to wear them.

Stay tuned! I'm sure to get better sooner or later!!

Bringing the World In - Especially when it's Hard to Go Out

Caregivers don't have time or energy to "go out" a lot of the time. This is exactly why I got the computer in the first place. I had a feeling (especially after doing research about bone marrow transplants) that we weren't going to be able to go out for awhile, so I wanted to bring the world IN. This is when I got on the internet. I did some very interesting things soon after Cristina was diagnosed. I researched about everything. I watched as much ice dancing as possible. I drove Cristina crazy. We laugh about it now, but I really watched alot of it. I had to focus a great deal of attention on whatever beauty I could find. I also HAD to listen to "oldies" music. I immediately tapped into as much teenage/dancing energy as I could.

I love finding art work... and I love sharing it!

We Are Survivors!

I had the privilege to be asked to be a panelist at the National Marrow Donor Program's Annual Council on November 3, 2007. November is "National Caregiver Month." Personally, I think we need National Caregiver Year... but... Here is the presentation I prepared for it. I only had time to give part of it, but it's very interesting. There were four caregivers, three were spouses. I was the only parent. There wasn't a dry eye in the house... I treated myself to waterproof mascara for this event. I definitely needed it.

PRESENTATION:

In 1994, my daughter Cristina, 19, was diagnosed with CML. She was getting ready to move back to NY to continue her education and I was going to move to Sedona, Arizona. We noticed that Cristina had these big bruises all over her body and so we went to the doctor who ran a routine blood test. We were notified on September 1, 1994 of the diagnosis. She was told by doctors that the best chance for a cure was a bone marrow transplant We lived off my savings, help from Cristina’s grandmother and friends. We found an unrelated donor and were set for May, 1995. However, Cristina went into blast crisis in March and had to have chemo to get her into remission to get the transplant. She lost so much weight from the chemo they weren’t even sure she would still be a candidate for the transplant. However, she managed to gain some weight so she could. She was pretty much half dead when she went into the actual transplant itself. And so was I.

I was completely unprepared. No history, she was so young.
Feeling horror, shock, fear, exhaustion, anger, powerless
Friends and family helped. Many disappeared. Many “strangers” helped
Became very isolated, couldn’t talk
Researched everything about transplants. Knew we were in for a rough ride. Didn’t know how rough.
Two years post transplant – life and death.
Next couple of years, still many complications, hospitalizations,
Next years, Cristina had several surgeries and was taken off disability-no longer has cancer
I was diagnosed with ptsd and put on disability
Having to be constantly vigilant because there were many medical mistakes

Challenges: what wasn’t a challenge?
Financial, lost life savings, bankruptcy, ruined credit, loss of ability to work (ptsd), exhaustion, dependence on kindness of friends, found out how few safety nets there are
Emotionally and spiritually devastating, tremendous pain.
Cried a lot when alone… driving around in car
Dealing with insurance, hospital staff, finances – day to day stuff
Always being secondary – never thinking about the cost to me to do this

What helped me get through?

Cristina’s courage
Trying to live up to her example
Love
Prayers
Friends and family
Dancing
Laughter
Music
Anything and everything joyful and beautiful I could find and store up in myself
Wrote a caregiver’s guide two years post transplant and have unpublished manuscript chronicling experience
The effects of transplant dominate my life forever
Cristina taken off disability, doesn’t have medical coverage, but has many medical issues.
PTSD with very area of life reminiscent of this.
Insomnia has made it difficult, almost impossible to work and maintain a relationship

NOT TO LEAVE THINGS THERE:

I found out how much courage, love, joy, beauty, kindness I have inside and can be.
I found out how thin the line is between sanity and insanity
I found out that even under the most dismal and horrifying of circumstances, that there is a choice in how to handle.
I found out how someone who has had everything taken away from them can maintain their grace, style, dignity and humor. My daughter is my heroine and example of how to "go" in the world.
Learning Acceptance
Privilege to have been the focus of so much love and prayers
Started doing Yoga Nidra meditation
Feel like I’ve been part of some GREAT WORK and in some ways cannot explain this work has been a privilege.

Sassy in Spite of It All!

Years of caregiving, endless stress, and well, suffering… have definitely taken their toll. I’m very fatigued, emotionally drained and have lost any semblance of a sleep cycle. In spite of these “challenges” and maybe even BECAUSE of them, I’m still quite sassy and sensational. Modest also!

I figure… why not? I’ve lived through the worst thing that could happen to me; fought back against all odds, and bent many, many, many medical professionals to my will to keep my daughter alive. There’s that saying that what doesn’t kill you makes you stronger. That’s true, but they left out the “sassy” part. In the Thesaurus, under sassy:

“lively, impudent, impertinent, playful, impish, feisty, brazen, full of fun, mischievous.”

I wouldn’t consider myself really “impish” but the other words seem to fit really well.

In many ways I feel “freer” now than I ever have. I am finding an internal resilience that I never really understood and appreciated before. I just thought, you do what you have to do and didn’t really appreciate my own self, who I am and what I’ve accomplished in life.

Hooray for Sassiness!

Past, Present, Future or Timeless

Living with Post Traumatic Stress Disorder is a most interesting thing. I just saw the movie, "A Beautiful Mind" about John Nash, a brilliant mathemetician who also won the Nobel Prize in Economics. He struggled with schizophrenia most of his life. There's one scene towards the end of the movie where he meets someone from the Nobel Committee, but because of his schizophrenia, he's not sure the person is real. I definitely related to that scene because many times, I don't know if I'm responding to what is actually going on in the present or if I'm having a ptsd "moment" where I'm flashing back to something from the past. My therapist calls this "intrusive" thoughts. Believe me, they are.

On the "bright" side, getting treatment for ptsd is helping me learn a great deal more about myself. I feel, in many ways, more authentic, compassionate and whole. I had no idea when my daughter was diagnosed with leukemia how drastically my life would change and how long lasting the effects would be. It's also encouraged ("forced" might actually be a better word) me to meditate. This is why dancing has become so important to me... keeps me "in the moment!"

Going through my daughter's illness and recovery made my entire sense of time change. Time seemed to be moving extremely fast and extremely slow. I could almost literally see the "pages" of time going past. The photo is of a Mayan mural. I studied a lot about the Mayans during that time because they were renown for their calendar and connection to the cosmos.

Timeless! I'm sticking with that (or at least trying to)

A Dream Come True… I’m Going to Perform!

I work out at the Levy Center in Evanston, Illinois. As I was walking through on my way to the workout room, I noticed a leaflet that said “Do you Like to Dance?” Well, for me, that’s not even a question. It turns out that The Dance Center Evanston has, as part of its program, The Evanston Dance Ensemble who received a grant to do an Intergenerational Dance Performance scheduled for February 18^th. The Evanston Dance Ensemble is the performing youth company in residence at the Dance Center Evanston. There will be three dance pieces of some type of “modern” dance.

I’ve never done anything like this before. And I can’t wait. The first meeting is this Saturday, December 15^th to see who’s interested and to get a better idea of what will be performed. Rehearsals will start on January 5^th. Even just the THOUGHT of REHEARSING is so exciting to me. I'm both VERY excited and VERY nervous... but mostly excited!

Stay tuned! I’m gonna be a star!

Single Mothers... Resilient, Radiant, Remarkable

In 1993, I founded and published a magazine for single mothers called "Against The Odds." The staff was all volunteers and all single mothers. We distributed about 10,000 copies every other month in Chicagoland for about 1 1/2 years. I wanted to do this because there was always so much negativity surrounding "broken" families, and how the children of single parents were somehow not as good as children from "whole" families.

I also became a minor "celebrity" and was considered an "expert" about single parenting during that time. Oprah Winfrey did a show on single mothers and I was a guest panelist. I got a call from one of Chicago's big newspapers to give my opinion about then Vice President Dan Quayle's use of "Murphy Brown" as an example of single mothers and how we were hurting the good American "values" of family. We also gave workshops and had several fun events. I re-typed the explanation for the Logo I used for the magazine (I lost the discs many years ago). I really DID have a life before I was a caregiver. Hard to remember, but I did!

“LOGO:

I was raised in the South Bronx, New York where the view outside my bedroom window was a brick wall and way, way in the distance, I could see the very top of a tree. I remember loving the top of that tree and thinking that by looking at it, I could forget the brick wall and the ugliness surrounding me.

There was a song that came out in the 60’s called, “There is a Rose in Spanish Harlem” by Ben E. King. I loved that song too. It reminded me of my brick wall and my tree. The song is the story of a rose that grows and blooms out of the sidewalk in one of the poorest, most violent and dismal ghettos in the country.

To me the song symbolizes how beauty, joy and victory can flourish even out of the most negative and adverse circumstances. That’s why I chose the logo of a rose growing out of a sidewalk for this magazine. “Against The Odds” is dedicated to the single mothers and their children who survive, flourish and succeed out of sometimes desperate circumstances. There IS victory among the thorns. The magazine is dedicated to you single moms, you are the Roses… It is your passion for life and your will to survive that this magazine recognizes and celebrates.”

If it's the Last Thing I Ever Do

Through the process of being my daughter’s caregiver, I did a lot of thinking about “last.” What I mean is… What if this is the LAST thing I say to my daughter? What if this is the LAST touch she ever feels? What if this is the LAST thing I do for her?

Living so intensely for so long between my daughter’s life and death, it’s hard not to think about that. When she was steadily losing weight (very long story) and we didn’t know why other than she just couldn’t eat, and just couldn’t keep anything down, I would be screaming at her to eat. I was so terrified that losing so much weight would shut down her organs.

She went down to about 72 pounds. At least that’s what she was the last time we had the guts to put her on a scale. She looked like the pictures that you see of people in concentration camps. She was completely mortified about ever letting me even see her body. It was truly excruciating when she did get undressed to look at her “impassively” without showing my horror at how she looked. So my “brilliant” way of handling this was to scream at her to eat. Fear and terror really take their toll and I was going a bit nuts!

Until… one night it finally dawned on me that maybe if this was her time to “leave” this world, I didn’t want her life to end with my shrill shrieking in her head. It was like “duh,” this is not how I want her life to end. So I managed to stop… just kept the shrieking in my head (that’s one of the reasons for my having post traumatic stress disorder… not being able to “process” or wrap my head around what was going on).

Of course, thinking about “last” things made me think about my own life also. Having cancer myself made “lasts” pretty important again. This has been a very good lesson (albeit one I really would rather have done without, but…) about how I want to live life and “go” in the world.

Tomorrow isn’t guaranteed, neither is the next second.

BLESSINGS TO ALL!

Dancing in the Mourning

As I think about my experience with my daughter’s struggle to just STAY ALIVE for so many years, I realize that, because of how long and how many times she hovered between life and death, I never really had the time to MOURN all the times I “buried” her and didn’t think she was going to make it.

I remember one time in the hospital, while she was in bed and I was sitting in the chair next to her, saying over and over again to myself, like a mantra… the "Lord’s Prayer." I remember another time her Uncle Phil was coming and I sat there saying to myself over and over again, like a mantra… “just stay alive to see Uncle Phil one more time.” These are only two examples of the, literally, thousands of times Cristina was so close to death. This doesn’t count all the other times she hovered between life and death at home and in the hospital and all the times I actually went out with a pager and she paged me because she was having serious difficulty. I would have to drive home… not too fast to get stopped by a cop, but not slowly because… the worst thing would have been to get home and find her dead and that she had died “alone.” That was one of my mantras as I was driving home for another emergency: “You are not alone. You are not alone. You are not alone.”

How many times can you “bury” your child without going insane? How many times can you do that without having the time or energy to really “mourn” this? Another aspect of this whole thing that was extremely difficult was that over and over again in my mind, I’d think about… what would Cristina want to be buried with? Do I talk to her about that? Do I ASK her about that? I didn’t know if she would want to be buried with her jewelry or if she would have wanted to “gift” certain friends with some of her things. I knew I’d bury her with her “blankey,” a childhood gift from her father that she’d slept with for many years. I knew I’d put music in her coffin. I knew I’d put flowers in with her. I was also afraid I’d throw myself in there with her.

As time has gone on and Cristina is no longer fighting for her life in the way she was for so many years post-transplant, I’m realizing that I never mourned all this. And then I got cancer. Malignant melanoma about 7 years ago. I never mourned my potential death… I was too concerned about how Cristina would handle it.

What was one of the ways I coped with all this? Dancing, of course! I found Argentine Tango. Argentine Tango is one of the most passionate and expressive of dances. For me, it was ONLY in Argentine Tango that I could express the pain, sadness, and ache in my heart about my daughter’s condition. It was this incredible combination of pain, beauty and sensuality all in one dance that, in any way, eased my heart.

So I Danced in the Mourning…

Blogging is bringing me so much Joy!

I've been wanting to do this for a long time, but haven't had the technical knowledge. If there's one thing about me, however, it's that I'm very determined... and I really wanted to do this. Through an ad, I found a way that the technology could be taken care of (mostly), I could basically concentrate on blogging. I was thrilled, hopeful and wary at the same time. I should be so lucky as to find a way to do this! And I obviously have.

The other interesting thing about this is that Robert, the person I'm working with randomly picked out the name "Venus" blog, and it's fitting so perfectly into what I want to write about in pretty much every area of life.

As I'm doing this and doing research (which I love), the name "venus" keeps popping up. I had blogged awhile back about "coincidence" or "fate," and I ask the same question again... Coincidence or fate?

Getting the Hang of this New Technology

So I put the photo in first and then I couldn't figure out how to "blog" the way I wanted so I just left the photo in. I don't think I can put the photo in first. Oy!

It's so beautiful. The photo is Antarctica. Snow doesn't look like that in New York where I was raised. Snow can be a HUGE hassle getting around, but it's really so beautiful. I love the stillness and silence of snow.

I remember when I was in my 20's living on the upper east side of Manhattan. It snowed really hard and it felt like the whole city was silent. New York... Silent? It's one of the noisiest places in the world. Except when it snows.

I vowed I wouldn't complain about the cold weather so I can't. After feeling literally "fried" from living in Nevada for awhile, I'd still rather be where it snows. Even with the hassle and the slush.

Doing this blog is very interesting for me. The artwork is just as important to me as the writing. I LOVE looking at the photos and artwork and seeing what I can use. Wikicommons has beautiful photos and artwork that can be uploaded. A lot of them aren't copyrighted and can be used.

I'm having a great time doing this.

Snow is so Beautiful

I'm Going to Rest Now. YAY!

I could never say those words during my daughter’s recovery. Especially for the first two ½ years post transplant. Gotta rest NOW... ALOT! Have to basically “relearn” how to do that. Getting some help from some supplements I’ve been taking. They’re very expensive, but they seem to be helping a lot. Thank God I have a very generous friend who’s helping me do this. Again, I’m so very lucky.

What Happened to my Brain Chemicals?

I am absolutely sure at this point that my brain chemicals are some combination of non-existent or not very good ones. Among other things, my entire “light,” “dark” mechanism has been completely irradicated. For many years, as Cristina’s caregiver, there was no longer any day or night. Emergencies happened at all hours, every day, for years. I had to not only be awake, I needed to be VERY alert and “together” because my daughter’s life was at stake many times.

I have woken up every two hours for many years now. Talk about not besting “rested.” I also stopped dreaming for many years. I did a lot of research about the brain during Cristina’s recovery. I had a feeling that the constant stress over such a long period of time was having it’s affect on my brain. Not only that, I also was learning that, under such life and death circumstances for such a long time, parts of the brain were used that hadn’t been quite so active before.

The main thing that seemed to help having any type of positive affect on my brain was dancing… and laughing… I did both a lot. Even in the misery. Or maybe because of the misery… another thing to ponder. Or maybe not. This is why the Yoga Nidra feels so helpful to me. Trying to balance such completely opposite, and intense feelings so long is, to say the least, very trying. For me, doing Yoga Nidra has been/is being very good for me. One way or another, you've just gotta roll with the punches. I don't know what else to do. Hard to learn to "welcome" everything... but seems to be better than the opposite.

Dancing helps me feel so alive and vibrant. Joyful Equanimity (for the moment) radiating out in every direction simultaneously.

This is from Wikepedia.com about the brain:

“The brain undergoes transitions from wakefulness to sleep (and subtypes of these states). These state transitions are crucially important for proper brain functioning. (For example, it is believed that sleep is important for knowledge consolidation, as the neurons appear to organize the day's stimuli during deep sleep by randomly firing off the most recently used neuron pathways; additionally, without sleep, normal subjects are observed to develop symptoms resembling mental illness, even auditory hallucinations). Every brain state is associated with characteristic brain waves.”

Could be why people with post traumatic stress disorder have such a rough time.

Beautiful Hearts Heal Each Other

I absolutely loved this piece of art. I'm not exactly sure what it is... but that doesn't matter. That's what "art" is about. The creative expression. The Ultimate expression. Sometimes I think Art is the only thing that helps humanity to survive. Everywhere we look there's pain and suffering. Sometimes "man" made and other times, nature.

I would imagine the first time a human painted him or herself or painted in a cave or on a rock... that must have been quite a thing. Kind of like discovering fire! That's what this reminds me of. Something primitive and gorgeous. Full of life. Full of healing. One of the only pieces of art I ever did was at Jada Fire's Hidden Goddess Seminar in Las Vegas. At the center of it was a heart. That seems to be where Love resides. Brains without heart leads nowhere and heart without brains... well, I'd rather have that than brains without heart. I'd rather deal with stupidity than heartlessness (although I really prefer both).

This is the painting I wanted to go with my last blog about Dan, but talk about "stupidity." I couldn't figure out how to get it on that blog. Well, at least I have heart!

You Gotta Have Heart and Friends

I've known Dan for about 5 years now. I met him and his wife Kathy at a meeting for community volunteers. We all became fast friends. They are among the most intelligent, kind, funny, and spiritual people I've ever met. Their concern for me and the world in general is a constant source of hope, happiness and inspiration to me. I was talking to Dan on the phone the other night and he told me he wrote something and it was with me in mind that he wrote the part about the "personal" sphere. I was (and still am) very touched and honored that he would write this with me in mind. He's still working on his web site... adding more fields, always striving to be better. Dan and Kathy add great abundance to my life and I'm so proud and happy to be their friend.

From Dan:

"Any field can be at the heart of the matter.

Sometimes the physical, factual and natural worlds becomes the heart of the story, with a treasure that emerges in the hidden wealth of resources; from a garden, to learning all the processes of civilization. Sometimes the community takes center stage, as a neighborhood or nation and the way that it governs itself encourages good things to happen.

But sometimes the personal sphere is just where it’s at. We’ve all met some person or persons who hold things together. Everyone has to do this to one extent or another at some time in living their lives, even if they aren’t really good at it, aren’t interested and studiously avoid it wherever possible. They still build up their own little corner of the world, with mementos and principles that those who get into their world come to count on for enrichment, and rely on their dogged integrity. Sometimes individuals, families, groups of friends and/ or neighbors are the center and soul of what goes on in all fields, and they become invaluable and precious to those people who enter into their lives. And they’re also really good at it. Such people that you may have met in your life are just thoroughly amazing, who, with their innate curiosity, concern about others, desires and perhaps inner pain or insecurity, develop an intelligence, brightness, and accessibility from reaching out with courage. They become the links or even anchors in many people’s lives who would never ever have found each other or learned what they really have to offer as acquaintances or friends. They gain the capacity to face issues. This becomes a set of stories, a way of being and wide-ranging experiences with unique insights to share. Even a relatively small group of friends who rely on and trust one another can interface wisely with most other parts of humanity."

Just to let you know, the next person who Pa In one e

How does someone get to be as lucky as me?

Considering everything I've been through in life, and considering that I have anxiety attacks almost daily (mostly due to the ptsd), I still think I'm very lucky. The main reason for that is because of the people I have in my life. As I look back and take away all the feelings of failure, insecurity and just plain irrational beliefs about myself, I have known and still know some of the best people in the world.

Especially since my daughter's illness, I have changed a lot. Many friends literally disappeared. I don't know, maybe they thought leukemia was contagious. Maybe dealing with a life-threatening illness made them think about their own mortality. It was very hard for a very long time not to feel completely angry, resentful and hurt about the people who disappeared. As time has passed, however, I’m not so judgmental and I think about the people I’ve let down in my life.

Then I think about the wonderful people who stuck around. Literally through thick and thin, constantly hearing nothing but bad news; this was going wrong or that was going wrong or Cristina was having some surgery or another horrible procedure. I felt like “Typhoid Maddy” spreading nothing but misery and pain. But wonderful people hung in there with us… They are truly blessed and know what friendship is really about.

It’s also true that one never knows what life has in store. I never thought I’d hear the words, “I’m sorry Madeline, but your daughter has leukemia.” Life is not guaranteed. The next minute is not guaranteed. But I have learned to be grateful for what I have. My wealth is not financial. My wealth is my friendships. TRUE friendships that have stood the test of time, pain and unbelievably enough… through it all… LOTS OF LAUGHTER! I am one of the luckiest people on earth!

Joy and Radiance in the Midst of the Storm

Most of my friends would say that I have a "gift" for finding healers. Every place I live (and I've lived in a lot of places), I seem to find the best healers and healing modalities available. Over the last couple of months it's become increasingly clear and unavoidable that I have become very limited, both personally and professionally due to having post traumatic stress disorder from being my daughter's caregiver. I've also been longing for "something more," some kind of spiritual healing that has eluded me all these years.

With one thing and another and my "gift" for finding healers/healing, I learned about an ancient Yogic meditation called Yoga Nidra. It's very hard to describe, but basically it's about finding your "True Self," and being aware in all states of consciousness. For years, I have hovered between wakefulness and sleeping. During Yoga Nidra, a person is awake and aware, yet fully relaxed. That sounded like something I needed since I've been in that awake state, but not aware and definitely not relaxed.

I researched everything about Yoga Nidra and learned about Dr. Richard Miller who founded nondual.com and bought his cd's. I've been using them for the last two month and have been having excellent results. One of the things Dr. Miller talks about in his cd's is the experience of "welcoming everything just as it is... refusing nothing..." That sounds pretty hokey to me, especially after what I and my daughter have gone through. How could I "welcome" insomnia? welcome fear? welcome terror? How does anyone do that? Yoga Nidra is about "joyful equanimity." Could I ever do that? Could I find joy and equanimity while in such terrible physical, mental, emotional and spiritual turbulence?

I'll give an example of something that happened to me just the other night: I went to bed and while I was laying there, all this terror/fear/dread came up. I could feel all this in my entire body. Like every cell was FULL of these horrible feelings. I KNEW I could never fall asleep feeling like that. I wasn't sure what to do. Then it came into my mind what Dr. Miller says on the cd... that "hokey" stuff about welcoming everything. I figured I have absolutely nothing to lose to just do that. So I tried it. I lay in bed "welcoming" these feelings as much as I could. The next thing I knew, it was 4:00 in the morning. I had actually fallen asleep!

This is only one example of what has been happening through this practice. For the first time, I'm getting actual glimmers of what it's like to relax! feel Joyful! know I'm Radiant! They're glimmers, but I can tell that these glimmers are real. For the first time in many years, I feel some hope that I can move beyond all the pain and suffering.

On a number of occasions I've just layed down in a comfortable position without the cd's and I've actually been able to feel joyful, radiant and relaxed in my own practice. That's been and still is a HUGE thrill! I was a caregiver panelist at the National Marrow Donor Program's Annual Council a few weeks ago in Minneapolis. Of course I brought the cd's with me because I knew that, while I was happy to be on the panel, it would be stressful. On the way home, my plane was in the air for about five minutes when some alarm bell went off and the pilot said we were having some difficulty and would have to turn around. For someone with ptsd, that is a nightmare! Welcome THAT! After we deplaned, I was sitting in the airport and could see the plane we had just gotten off and smoke was billowing from the tail. I know that listening to the cd's and meditating got me through that relatively calmly. I didn't run screaming through the airport!

There are many types of meditations through many spiritual paths. For me, Yoga Nidra has been the most helpful and insightful. I don't think it matters which spiritual path, which meditation someone practices, but I think practicing some type of meditation can lead to a more joyful, radiant and accepting place in your heart, body and mind. I think about the endless hours I've spent staring at the tv. Now I spend much less time there and much more time meditating and getting in touch with my True Self. Doing this is a gift to myself and others. A gift that radiates in all directions simultaneously...

Dancing in the Dark and Letting in the Light

One of the reasons I love to go out dancing is because it's relatively dark. There are so many times I've gone out dancing looking really, really bad because of my intense role as a caregiver for such a long time. Puffy eyed, miserable, crying there and back and definitely chronically sleep deprived doesn't make for looking gorgeous. But I would go because dancing means so much to me. Last night was no different. I'm always so tense as I drive there. My car isn't in great shape, and I usually don't have too much money. But, as always, as soon as I open the door, everything changes. I hear the music, see the smiling faces and I'm devoured by its joy and beauty. Everything else fades from my mind. I have some kind of "teen age" energy when it comes to dancing and I feel powerful, sensual and vibrantly alive. The other thing I realized last night while dancing is how "centering" it is. To be a good dancer (which I like to be) you have to be really centered. Posture is very important in dancing and can make the difference between a good dancer and a great one. This good posture really aligns the body in a healthy way and enables a person to move better, with more fluidity, grace and control. I just love it! Having spent so much time being tossed and blown by my daughter's illness and recovery and basically by life itself, being centered is very helpful for me. I also find that within the darkness of a dance club, there is so much light. Another paradox. The darkness if filled with the light of music, rhythm and joy. Like the stars that fill the night sky or the yin/yang symbol of light within darkness and darkness within light. Like a candle that burns in the darkness. Sometimes I wonder where do the darkness and light meet each other? At what point, in what place does the light of the candle meet the surrounding darkness? Where does the darkness take on the light of the candle? Good questions!

Is it Coincidence or Fate?

I was completely drawn to the painting that I used last night in my blog. I wasn't quite sure why, among all the other artwork I could use for a blog on dancing, I chose the painting that I did. It is of Ida Bernstein. She is someone I never heard of, but I thought the painting was beautiful and so I used it. Of course (me being me), I had to do research and find out who Ida Rubenstein was. It turns out, she was a ballet dancer, patron and iconic beauty in the late 1800's. Rubenstein was bisexual and had an affair with artist Romaine Brooks who painted her a number of times and used her as a nude model for Venus.

I "clicked" on this information and the word "Venus" took me to the painting "The Birth of Venus" by Boticelli. I'm not sure of the connection, but ANYWAY, here is where Coincidence and Fate get blurred. For many years, my daughter Cristina had a poster of this painting in her room. After she moved to California I (luckily) inherited this and loved it.

The name of this blog is "Venus Blog." I'm not sure what all this means, but it's just SOOOO coincidental... or is it Fate?

Life Is Like A Dance Floor

I became a dancer during one of the most difficult periods of my daughter's recovery from a bone marrow transplant. Dancing is probably what saved both of our lives. In dancing, I found the only relief from the constant pain and anguish of my daughter's condition. Dancing was literally the only way I actually took care of myself as a caregiver. Besides the physical benefits of dancing: aerobic exercise, increased endorphin levels and increased flexibility, it had a major impact on me emotionally.

I would go from the utter misery of my daughter’s situation to the utter joy of dancing. This joy was the only thing that alleviated the emotional pain I was in. For me, dancing took total concentration and for that few hours I was out spinning and twirling, I could think of nothing else. Many, many times I cried all the way there, danced for a couple hours, and cried all the way home. There were countless times I went out puffy eyed, disheveled, not caring what I looked like… but I danced. As soon as I walked into a place to dance, it was like Dorothy in "The Wizard of Oz" where the movie is black and white until she gets to Oz and then everything becomes color. That's how I felt. The misery and bleakness faded away in the few hours I spent out dancing. Everything about it was so beautiful. The music, the movement of everyone, the smiles on everyone's faces. I was THRILLED!

Over the years, I’ve discovered many lessons through dancing. Chief among them is that Life is like a Dance Floor. There are many paradoxes involved with dancing which could be why it’s so much like life. There is a room full of people with just so much room for everyone. Other than the partner you are with at the moment, everyone is independent of each other while, at the same time, everyone is very dependent on everyone else in the room. No one likes the person who bumps into everyone, or is rude, loud or doesn’t know how to “play well with others.” It’s like children playing in a sandbox, or playground. It is the “art” of complete independence and complete involvement with others.

Then, of course, is the person you are dancing with. As one half of a couple in dancing, you need to be completely involved with your partner, while at the same time completely standing on your own. You don’t want your partner to drag you around, weigh you down, step on your feet or hit you in the head while turning you and you don’t want to do that to your partner. Both people need to be strong individually and yet completely one. To dance correctly, you need to find the perfect balance between being totally relaxed and totally toned. As a “follower” in dancing, you can NEVER anticipate what your partner is going to do. That’s one of the things I love most about dancing. Learning not to anticipate. I spent so many years through my daughter’s illness and recovery anticipating what was going to go wrong next, what new emergency there was going to be, what new surgery she would need, etc. Dancing for me means to be completely Present in the Here and Now. That seems to me to be the best way to go in life too. How much time do we spend regretting past mistakes, and worrying about the future? Never living in the Present. For many years, I would only have a few hours a week to go out and I learned to live each second of it and how precious NOW is!

Another aspect of dancing that I love is that if you make a mistake… you just keep moving! I love that! There’s a quote about what it means to be a champion: something like… it’s not how many times you fall down… it’s how many times you get up! So making a mistake and moving on is a great lesson in being a Champion in life.

Dancing for me is also like being in the eye of a hurricane. In the center of this music and movement is complete Stillness. It is in this Stillness that I have been able to process much of what has been happening to my daughter and me. I know I appear “rude” to other people because I don’t talk much, but I need the Stillness and Silence that’s within the dancing. It also became a very sacred experience to me. Dancing became (and still is) part of my spiritual life and a sacred space that is absolutely necessary for me. Like life, we all need a sacred space to process, just “be” and quiet our minds. I also love watching the way good dancers’ feet move on the floor. Good dancers’ feet “caress” the floor. It’s beautiful to watch and even better to do! It makes me think about how we relate to the earth and where and how our feet move. The “air” around dancers is also very clear and pure. Like watching a painter paint, the air around the painter is clear. The artistic process creates an energy that is beautiful to be a part of and witness.

I’m going out dancing later!