Another Paragraph …or Two

Most of the shadows of this life are caused by our standing in our own sunshine.

Ralph Waldo Emerson

Above you will find the Hay House Radio Interview I did for Finding Heart Horse

I thought I would post another sneak peek for those that haven’t read it. Remember, the proceeds go to Covenant House, Vancouver, B.C.

There is always hope.

This is from the prolog About A Horse. You can find the first part in my previous post Finding Heart Horse…one year later.

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When my parents took me to visit my aunt and uncle who lived on a farm, I quickly and quietly made my way into the world of the barn where the horse’s lived. I would nestle into the golden straw, inhaling the fragrant honey dust, as hours magically disappeared. Listening to an orchestra of barnyard sounds while enveloped in the dusty air brought me a perfect peace.

It was into that perfect peace that my Heart Horse first made his appearance.

Just as if he were a real horse, my Heart Horse danced and pranced and snorted with joy. Sometimes when he was afraid, I could feel him inside my own heart, racing around frantically, as if to warn me of pending danger. Other times he stood quietly in the grass, munching on crispy red apples and appearing deep in thought, as if to just let me know he was near. And sometimes he galloped wildly free of restraint, tickling me with his unrestrained joy. But those happy and free rides were rare. Mostly he stood guard.

Old Uncle Willy understood my love of horses. He understood my connection to them and my ache to be closer to such a strangely forbidden desire. Uncle Willy always seemed to know where to look for me whenever we went to the farm. And he always seemed to know to look for me, when others hadn’t thought to.

One morning when I was huddled under a mountain of straw in the corner of Ginger’s stall; Uncle Willy came looking for me. He found me hiding there, buried under a pile of golden grass and crying, as Ginger stood over me with her warm breath tickling my neck as if to say, everything will be okay.

I was hiding in there because my cousin had told me, yet again, that I wasn’t real family. It seemed that each time she said that, it hurt a little bit more. Sometimes she even said it front of my mother, but instead of telling her to stop telling such awful lies, my mother would just agree. That really stung. And it made me sad.

I wasn’t sure what they meant by not being “real” family, I was just as real as they were, but I was sad that they even thought such a thing. After all, I had the pictures. My parents holding me when I was a newborn, teaching me piano when I was a toddler, posing me in front of furniture or houses or relatives to take my picture when I was a child. What could they possibly mean that I wasn’t real family? I didn’t understand at all, but I knew that there was something about me that was different. I just had no idea what it was.

Uncle Willy seemed to understand why I was crying, but he didn’t ask me about it. Instead, he told me a story about the Rocky Mountains and the wild horses that lived there. With his soft and comforting words, my uncle told me all about how magnificent it was to see a thundering herd suddenly appear in a lush green valley in the mountains. What Uncle Willy told me that day in the barn gave me the strength and desire to survive the cruel and hurtful comments of my cousin.

“Claire, you wouldn’t believe how amazing these horses are!” he told me. “They sound just like a train going by at a hundred miles an hour when they come galloping out of the mountains. Their manes blow behind them in flashes of black, silver and gold, like flying flags!” I listened to Uncle Willy’s fantastic story, enthralled.

“Tell me more, Uncle Willy! Tell me more!” I pleaded.

“Oh, it’s amazing, Claire, just amazing. You can even hear the different types of snorts and whinnies—they sound just like they’re talking! Then all of a sudden in a gust of wind and dust they’ll be gone. But . . .” and he looked left and right, like he was about to tell me a secret, then lowered his voice to a near whisper, “When they’re gone, you’re left with a feeling of magic. You know what it’s like to be free and wild but still be a part of a family. A really big family!” The images Uncle Willy conjured completely enchanted me, and I’d practically forgotten my cousins’ spiteful words.

“I tell ya girl,” he added, “Someday you have to go there. It’ll change you forever.” I watched as he got a faraway look in his eyes and sighed as if he were there that very moment. I snuggled into the straw and closed my eyes, wishing I were there, too.

“Someday,” he promised me, “when you’re older, you can go there. You’ll see for yourself how beautiful those horses are. And here’s the best part!” He smiled, and then said, “If you can catch a wild horse, it’s yours! It will belong to you and only you for the rest of its life. That’s the rule.” Uncle Willy tousled my hair and pulled me upright with a grin. “Come on, now. Let’s go inside and get some ice cream!”

I couldn’t believe my ears. If what Uncle Willy said was true, and it had to be or he wouldn’t have said it, I could actually have my own horse some day! I brushed all the straw off of my clothes and went back to the house with Uncle Willy for two big bowls of chocolate ice cream. But I couldn’t pay attention to anything else he said. All I could think about were those wild horses.

As excited as I was about pursuing wild horses, in the weeks and months that followed I knew better than to talk to anyone about my dreams. I had learned how quickly people will snuff out your dreams if you say them out loud. So I buried those words inside my Heart Horse, assuring him he would have company some day. He whinnied softly inside my heart, swaying back and forth as if to say, we will wait, we will wait, we will wait.



Have you met “Your Shadow” yet?

Carrying on from Generational Pain… we meet Our Shadow.  Have you met yours yet?  The shadow is simply the dark side of someones  personality. A person can easily meet their shadow since it lives in the projection upon others.

Carl Jung coined the term but its also what Freud called the personal unconscious.  When we begin the journey of self discovery related to adoption, abuse, rapes, abandonment…whatever it is that drives us to delve into our psyche the shadow is the first to be met.  Until we know intimately our own shadow it is believed that we are only living on the surface, or existing in a facade of who we really are.  Adoptees especially are good at living the life of a chameleon and so are victims of any abuse..living the secrets.

ImageI was always told if I didn’t perform correctly or behave in a certain way I “would be sent back”, only I never knew where back was.  Trauma victims live a life of duality.  We function in society as expected, while keeping the shadow locked away, hidden out of fear or shame.  As long as we hide our shadow or refuse to acknowledge its presence, it will be conveniently projected onto other people.  Finding my biological family, writing Finding Heart Horse and The Wall of Secrets put me into a place where I was forced to examine each and every aspect of my shadow.

Practicing Buddhism is like engaging in Cognitive Behavioral Therapy since it requires you to dig deep in the trenches of what you consider to be “self” and  suffering.

The first sign of shadow projection/suffering, shows up as a strong emotional reaction to anyone or anything in  your world that is not in line with your beliefs.  It’s that unconscious, gut reflex projecting onto others, usually in  an emotionally charged verbal onslaught of criticism and blame.  If you can be mindful of when this happens, you will recognize your shadow in it’s finest form.  You can also see clearly by watching who your person is attracted to, either negatively or positively and the outward perceptions which are attached to the attraction….this is your shadow showing you itself…pay attention.  It can be a good thing!

In Buddhism the first two of the Four Noble Truths state that: Suffering is the basic state of the human world and: that suffering arises from desire.  If you look at the roots of suffering you will find the desire, the concealed attachment from which the shadow projection erupts.  You can feel it physically,  The gut, the nervous system, the emotion, the anger..If you can see these things and respond with compassionate, non-judgemental awareness it is eventually possible to expose the desire and release it with kindness towards yourself….relieving the suffering/the shadow.

It’s seen all the time in Adoptee groups, the anger, the pain, the rejection, the fear based living and yet, we are fortunate to witness this, not only in ourselves but others.  It means we can become intimate with our own shadows, therefore becoming whole, healthy and healing in the process.

For all of us that have experienced trauma,  rapes,  abuse,  neglect, violence, its crutial we find our own shadow and make peace with it.  You will find it slinking around in the secrets, the dark slimy alleys and the ghost filled rooms of your heart and soul.

To have a shadow is not to be flawed, but to be complete.

You cannot defeat it.  Just accept that fact right off the bat.  What you can do is be friends with it and expose it to the light and find acceptance and compassion for yourself.

The world of Adoption if full of secrets as all the other worlds of trauma are.  We were (those in my generation) raised in a society that lived secret lives inside perfect houses and church three times a week.

 Finally!  Finally, thru the world of cyberspace and words on pages we are able to expose those secrets and lies and free ourselves from a chained existence.

 Projection doesn’t make the pain go away permanently.  What it does is create a constant state of inner-vs-outer fighting while fuelling the shadow

The solution is to un-create the shadow.  There is nothing in it that is beyond our power to dissolve.  Instead of allowing your shadow to victimize you, grab hold of the control switch and reclaim your true function as creators of a new future.

It takes time to create our shadows and hand over the power and we need to recognize those times when we are giving away our freedom to the shadow.

Keeping Secrets from yourself and others.  Forms of secrecy are denial, deliberate deception, fear of exposing who you are, and conditioning by a dysfunctional family.

Holding onto guilt and shame.  Recognize no one is perfect.  When you feel ashamed of your mistakes the shadow gains more power.

Making yourself and others wrong.  Judgment is guilt wearing a moral mask to disguise its pain.  If you can’t release your guilt/shame it’s so easy to pass them on to others.

Needing someone to blame.  If you decide your pain is a moral issue you will have no trouble blaming someone else you feel is inferior in some way.

Ignoring your own weakness while criticizing those around you.  This is the process of projection.  If you feel the problem is with another..you have projected your own fear instead of taking responsibility for it.

Separating yourself from others.  When it becomes “them” and “us” we always think outside is the good one.  Isolation increases a sense of fear and suspicion and the shadow loves that.

Struggling to keep evil at bay.  I know we have all survived incredible traumas but when we think evil is just around the corner (which is our own creation or illusion) we give the shadow huge amounts of power.

It’s a process for all of us.  Once you remove the power from your shadow by exposing the above processes that fuel it you need to make opposite choices to escape and be the one in control.  Yeah, I know.  Easier said than done..she says with a grin.  It’s challenging and tiring doing all this self exploration.  The freedom it allows is well worth it.

You have choices.  They all come with steps that I will write in the next blog.  Stop projecting.

Detach and let go.

Give up self judgment.

Rebuild your emotional body.

The shadow has persuaded us to blame others and not take responsibility.  It tells us we are unworthy of love and respect.  it promotes anger and fear.

The shadow lies…..

Re-Surfacing

  

Medicine BuddhaThis is my Medicine Buddha Thanka in my meditation room.

It was given to me by my wonderful Tibetan friend Namgil from India.  His Father painted it just before he passed on.  I’ve been spending a great deal of time in there the past few weeks.  Well, there and the ER as you saw on my FB.  

I’ve been sitting, laying, reflecting, meditating, shedding tears… trying to understand the concept of loss and pain, both physical and emotional.  I always think I’ve got it….until it happens the next time.  Mind you…considering how I was a few years ago, I’m so much better at recognizing and stepping outside of my physical self to observe.  Being in the presence of the Medicine Buddha helps, just as being in any kind of spiritual place brings a sense of peace, belonging and clarity.

His deep blue, ties back to a master healing stone Lapis Lazuli.  The deep blue is associated with the brow chakra,  The attributes of the brow chakra are discernment, clarity, vision and seeing beyond illusion.  How appropriate for me at this time.

In his hand he holds the myrobalan fruit, representing all of the best medicines in the world.  Being so ill these past few weeks I soak in the energy this brings.

His right hand gesture represents and symbolizes the eradication of suffering.  Especially the suffering of sickness using the means of relative truth.  The left hand is resting in his lap palm upward symbolizing meditative stability.  Meditation is looked upon as a tool to aid in the eradication of sickness and suffering, both of which have been a huge part of my life.

How? By digging deep into the very roots of the pain and suffering and finding the absolute truth.  I’ve written about digging in the dirt and finding our own diamonds buried underneath the rubble and baggage we carry around.  It’s a lifelong process, this digging.

This has been National Adoption Awareness Month.  I don’t need to tell you how much has been discussed amongst the First Mothers, The Adoptees, People trying to change the system in hopes of making things better.  Post after post written about the atrocities of adoption and how it’s left behind a trail of people with broken hearts.

 I’ve thought endlessly of how it has affected me and those around me.  I’ve had to re read FINDING HEART HORSE several times this month in preparation for printing.  These reads have brought deep reflective tears and awareness for the young girl who suffered so much trauma.  Interesting.  I thought I was done with the tears.  It was with compassion this time, with understanding and acknowledgement that came from my heart.  Different than before.  Even pain has layers.

Much of my suffering comes from a lack of connection rooted in being taken from my Mother.  Now many are lost to me and my heart breaks sending me into a dark place of despair.  I know many of you have felt that loss, that darkness, that aloneness even when in a room full of people. I know some of you are sitting there now. When the actual people move on you are left alone…with yourself and your Medicine Buddha or as in my book…your Heart Horse.

I’ve tried to repair the cracks.  I’ve used crazy glue to mend the pieces that fell completely out.  I’ve read, and prayed, and forgiven.  Yet I cry alone.  No matter how you look at it, unless you are there for yourself, love yourself, accept yourself you will always be looking outside and you will find nothing.

In the ER I was by myself.  They pepper you with questions while you are gasping for air, tangles of tubes and chaos around you.  “Who’s your next of Kin?  Who should we call if we intubate?  Who is your next of Kin?  Over and over.

 When I first found my birth family I was so excited.  I finally had next of Kin and put their names everywhere never thinking that one day the space would be empty once again.   Such a simple thing to so many…next of kin.  When you are adopted and live your life with no information, no history, no kin..its just so amazing to have names to put down….such a simple thing and yet so important.  Next of Kin.  Such a loss then and now.  

ImageThe sooner you figure this out…the better.

 Less suffering, less chaos.  Easier said than done, I know.

So, I’m laying in my meditation room contemplating some pretty heavy subjects.  Death for example.  How fast life can change.  In an instant someone is gone.  We see it on the news everyday.  Do we take time to really think about the person, about their families, those left behind.  Did they argue that day over something so silly as a spilled coffee.  Did they say goodbye with a kiss,  Did they say thank you for all that that person has done for them.  Perhaps its only when you come face to face with your own immortality that you raise these questions.  I would hope everyone thinks about these things.  I know in reality they don’t .  How many people live with regrets.  Regrets of not doing, not saying, not forgiving.  I am working hard to not be one of those people.

I’ve had several near death experiences in my lifetime, each time vowing to make each day count.  To be generous of spirit, loving and kind.  To make amends for my wrongdoings.  To help those less fortunate and be there when needed for those who call out.  I make it my daily practice.  Sometimes, i fall behind and slip into my own pain body.  After all, we are all only human.

We all want the same things really.

 To be loved and respected.  To be heard.  To be wanted and cared for.  To be happy.

After coming home from the ER this last time, I was reminded once again how fast life can be lost.  

It’s Thanksgiving Day a few hours south of me.  A day where families get together to celebrate gratitude.  Something we need to pay more attention to each and every day.  For those who are alone and in pain on this day, know I’m thinking about you and sending loving energy.  I know too well what that feels like.  Look inside, look at the small things and be grateful for just taking a breath.  Just taking a breath, nothing more.

I believe the essence of all teachings, from all forms of spiritual communities is the same.

Commit not a single unwholesome act.

Develop a wealth of virtue.

Tame, transform, conquer this mind of ours.

 Be Peace, Compassion and Wisdom.

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We Are What We Think

“We are what we think.

All that we are arises with out thoughts.

With out thoughts we make the world.

Speak or act with an impure mind

And the troubles will follow you 

As the wheel follows the ox that draws the cart.

We are what we think.

All that we are arises with our thoughts.

With our thoughts we make the world.

Speak of act with a pure mind

And happiness will follow you

As your shadow, unshakable.”

From the Dhammapada

 

Mast Cell Madness…Will you love me anyway?

ImageHow many of us ask this daily in our minds when we are struggling with Mast Cell Disease and at our worst.  Ever since I wrote my last blog “Coming out of the Closet” I’ve been thinking, thinking in a clear mind.  

For three weeks I was in a total flare.  Three very long weeks.  I didn’t use the epi pen because the upper body muscle spasm was different than before and it radiated into my shoulder.  Cardiac possibly, was my thought.

 Now, think about it..I didn’t use my epi because it could have been cardiac.  How irrational is that thought? How irrational was it not to go to emerg if I thought it was cardiac?

Very irrational now, but then it made perfect sense to me.  More embarrassing is that I’m a retired nurse.  I didn’t go to emerg. because I didn’t have a plan for my little blind doxie or orders set up in emerge…we all know how important that is.  My last time there was a nightmare so I refused to go again until they had orders in their “black binder”.  My doctors insist I cannot continue to treat myself at home with epi and nebulizer.  It’s too unpredictable and I agree.  I’ve been doing it for awhile now and in my clear mind I know the risk.

So from the time I was at the TMS Conference where I used an epi and prednisone for three days in order to get home, until October 18th when I went to the doctor, I was in anaphylaxis.  Plain and simple.  Not just a flare but extended 2 system, stage 3-4 anaphylaxis,  only I just kept going.  On the 18th my C-RP (sensitive indicator of inflammation) and anaphylaxis was 70.. n<5.  I was in so much pain I was in tears, yet I kept going.

 The reason I’m writing this part is because in my last blog I said, “no one sees me when I’m sick” “No one knew”.  There was no one around to tell me my thinking was irrational and I functioned (to a point) daily with a great deal of couch time.

One week later, my C-RP is down to 15, most of the spasm has gone and I know my thinking is clear.  

There have been many conversations about the different symptoms of Mast Cell Disease but we seldom discuss the emotional side, the brain side, the unpredictable side that actually has its own diagnosis.  Mixed Organic Brain Syndrome.

It bothers me even using the diagnosis.  I worked for over 20yrs in an active Psychiatric Unit never thinking that ten years down the road I would be talking about the diagnosis in reference to myself.

Now, with a clear diagnosis of MCAD with systemic involvement when I look back, I can clearly see times where emotion was uncontrolled, It wasn’t depression, altho’ I certainly had much to deal with in the way of stressful events.

 I loved my job, the acuity and stress of the unpredictability.  It was when I became quite ill with cholelithiasis and pneumonia at the age of 50, had just bought my dream house and had decided to hire a search agency to look for my biological family.  No stress there!  That’s when I started crying at the grocery store and couldn’t get off the couch.   My face would swell up on one side, i’d be wheezing and with hives and I would carry on at work like nothing was wrong.  Again, no one knew how sick I was.  I didn’t know.  I do now.

I don’t want anyone to think illness is just an excuse for behaving badly because it’s not.  Neither is lack of education an excuse for mistreatment of those who are ill.

 What I do what to explain… that this part, this brain part is real, and so badly misunderstood by all.  By those of us who experience it and the people around us.

Not only do we have to deal with the endless symptoms of misbehaving mast cells in all areas of our body including the brain, but also the lack of understanding with our families and friends.

 Its lack of knowledge, not love that causes the problems.  Surviving with this disease is a family affair.  We can’t do it without you but we need you to understand the depth of the symptomology.

I’ll just list a few that I myself have noticed.  Ten years ago, I was a highly functioning, well respected nurse.  I don’t want to be thought of as a diagnosis but I’ll confess anyway.  I’ve had to hang up my hat, so to speak but the person inside is still the same.

Issues with cognitive functioning, changes in mood, irritability, forgetfulness, vagueness, inability to concentrate at times, strange sensations like little bugs crawling up the back of my neck into my scalp, smelling smoke or electrical fire when there isn’t any, clumsiness, feelings of doom and gloom, difficulty finding the right words, anxiety, uncontrollable tears.

 I’ll stop there even tho’ i know there’s more.  Most of the time now they are controlled unless I’m working up to a reaction.  Then I notice I get teary and quiet.  Can’t stand to be around crowds or busy activity.  It causes sensory overload.  Add into these “brain” symptoms, the long list of physical symptoms and you find a mast cell disease patient trying to get through the day, the moment.

Some folks have anger outbursts, depression, jittery feelings….the list goes on and on.  My example of going 3 weeks in a reaction because no one knew and I wasn’t thinking clearly is important in that we need to bring understanding to those around us.

Mast cell issues with the brain have been documented and studied in journals of medicine.  You are not crazy.  Many of us have spent years, decades even going to doctors looking for answers, many of them slot symptoms into various boxes of diagnosis, some even psychiatric.  How degrading and humiliating it is for us, being so physically ill to have someone discount the reality of what’s going on in our bodies.  Mast cells are responsible for so many things in our bodies and brains, never mind when you get into 23andMe and discover Methylation issues affecting dopamine and serotonin.  You/we are experiencing a reaction, not just being a a pain in the #$@

In 2003, the year I was 50, I found my biological family and my mast cells went crazy.  They pushed me over the edge into the abyss of masto hell only I didn’t know what it was.  They thought i was depressed and was avoiding them when I was in a place of such sensory, emotional overload I could barely handle a neighbour saying hello.  I couldn’t stop crying, I couldn’t get off the couch for the unrelenting and unbearable fatigue.  Every day there was a different rash.  My collagen and degenerative disease took over.  I tore my rotator cuff, my jaw went out of place, the disc slipped due to DDD, i was in never ending pain and had to wait almost two years for surgery managing on my own. No wonder I crashed and burned.  No wonder my mast cells took over.  No one understood, not even I knew what was going on.  I chalked it up to reunion stress and the normal reaction of needing to regroup.  My doctor said its CFIDS and FIBRO..you need rest..but it got worse.

No, what I really needed was a proper diagnosis and understanding and care from those that claimed to love and support me.  It took several years of continuous decline for me to be able to put the puzzle together and by then I was having anaphylaxis every week at least.

Just before I went for diagnosis in South Carolina at Hollings Cancer Clinic, my daughter told me, during an argument that when I’m really sick my mind, emotions, and heart get all crazy and I take it out on her.  At the time I didn’t see it.  I do now, except for the heart part because I’ll always love her.  I’ll put it in writing and send it out to the cyber world. You were right, you saw something that was different about me and voiced it.  You did as so many of our family members and friends do. Unfortunately it’s done without the knowledge and understanding of “why”.

What we need as mast cell disease survivors, is compassion and kindness. Understanding the physiology of the disease helps with that.  Understanding that when you see the signs of irritability, or tears that its not judgment and anger we need, its understanding and kindness in pointing out in a gentle way that perhaps we need some medication because the mast cells are acting up.Image

It’s not us, as a person.

It’s the mast cells.  It’s the disease.

Perhaps there are small ways your kids can be involved in pointing out you are more irritable today…without judgement..with a desire to help not hinder.  Stickers or magnets on the fridge perhaps as a way of communicating without confrontation.  Smiley faces or angry faces, whatever works.  Might even work for spouses and other family.  It’s a difficult subject to bring up especially when the person isn’t themselves at the  time.

For friends and family, spouses involved with caring for someone with mast cell disease.  Educate yourselves as much as possible.  We didn’t ask to be sick.  We can’t help it, nor can we completely control everything about our bodies at will.  We strive to, but perhaps we just aren’t there yet.  A kind word, a phone call, a visit means more than you know.

Isolation is one of the most difficult parts of mast cell disease or any invisible disease.  In order to control the mast cells we need to have a very controlled environment, with food, with smells, with stress, with activity.  

Everything about life changes.  It’s a grieving process for everyone involved, since life will not be what you had planned it to be.

 Be gentle with each other.

 Be kind with your words.

 Be there with your actions expressing your love and understanding.

 Be patient with us.

 Don’t forget that inside there is the same person you knew and loved before,

only now we are having to deal daily with more than most people could handle in a lifetime.Image

Letting Go of Who You Thought You Were…

Who are you? Do you know? 

Who were you before?  Before what?  I would have to say, before many things.

Someone asked me the other day why I can’t just stop writing about the past.  My answer to that is that I never had a past before to talk about, well except for the one in FINDING HEART HORSE.  As adoptee’s we are void of history, void of a past and full of loss only.  Until….

Until we search.  Until we grab each piece of paper with bits of information on it and try and put it all together.  I’m sure all of us had a tin box in the closet like the one I had, or a shoebox that held tiny bits of information gleaned over the years.  If we are lucky and find our adoption papers or can apply for non identifying information we fill with anticipation in perhaps finding a bit more about who we are.

How can you let go of the person you used to be until you find out who that person is?

In writing FINDING HEART HORSE i went through layer upon layer of stories of who I thought I was only to discover after rewriting seven times….I was no longer my story.  The words between the covers now are the story, not me.  I was terrified for years that someone would find out who I really was and here it turns out…it wasn’t me at all.  It was just a story.

I wonder if I write another book on purely adoption if that would be the case  in the end.  Would I then not be my story.  The answer is no, nothing would change the reality of the primal wound and the damage done. 

If you don’t have the wound of a broken heart, how can you know you’re alive?

 If you have no broken heart, how do you know who you are?  Have been?  Ever have been?”  

  Edward Albee

We all have wounded hearts to some degree etched with at least a few of life’s scars.  If that is the case, how can we find peace”  How can we release our sorrow and move beyond negative memories and hurt?  How can we release our attachment  to the past?

One thing you never hear in adoptee groups is the prattle of well meaning friends who say things like “You need closure”,  “You need to move on”

Okay, I’ll get right on that.  Thank you!

I worked in Psychiatry for many years and I remember looking after a patient who had suffered great loss.  As we were discussing the stages of grief and closure,

I said.”Maybe it’s time to let go and move on.”  “Maybe it isn’t,” she replied..”Maybe i’m not done.”

I think of those words often especially in relationship to adoption loss.  Maybe in our case, we are never done.  All loss is painful but the loss of a mother in utero is one that goes beyond the normal realm of thinking.  It’s an energetic loss of self before we even enter this world.

When you suffer with PTSD… Adoption trauma , rape, abuse the grief is never “done”.  Mourning is part of the process as well as a deep and significant spiritual experience.  It drives us down into the core of our being, our authentic self.

There does come a time that we need to release the pain even tho’ certain losses remain with us forever such as in adoption.

 We need to regain balance by processing but the loss remains as part of our history.

That doesn’t mean we spend our lives grieving or living in our past.  We find ways to co-exist with our sadness.  We can embrace our pain and our losses and be greater and more authentically real for doing so.  We are never going to erase the deeply ingrained memory of our grief and loss and I don’t think it would be good if we did.  We would become unconscious beings

devoid of feelings and memories.

We do have to find peace and acceptance within the framework of our daily lives.  Finding a way to peacefully coexist with life’s losses takes courage, and inner strength and work.

It’s all Karma anyway.  Blowing in like the wind, in whatever direction it chooses.  We have no control over the blowing of the winds and the world around us but we are in charge of how we relate to those winds.

That’s what makes the difference.

If you want your life experience to be different, you have to do something different.

We all have choices.  We can change how we view the world.  Change is going to happen anyway so we might as well just embrace the idea and go with the flow of life.  Change allows for the constant regeneration and renewal of ourselves.  I’ve noticed its the times of crisis that have preceded the most growth and change for me.

Adoption has it’s own unique set of core beliefs, habits, protections, behaviours, attitudes, opinions and preconceptions.  Everyone has them.  Adoptee’s are just different, deeper perhaps and from a place that was hardwired pre-birth.

Once you begin to identify these and begin to let go, we begin to let go of who we used to be or who we thought we were.  With new vision and a new way of being we are open then to a new flow into that space now created by relinquishing those old beliefs.

Just imagine allowing all the positive energy that can now occupy a space once filled with such negative and painful beliefs.  You might even be able to say to yourself, that yes, I am loveable.  Yes, I’m worthy of good things and being happy.  Yes, I do belong.  I exist in this universe.  I may belong in a different way than I thought I would, but I belong…to myself.  Being at peace with …just being

‘There is no present or future-only the past….happening over and over again—now.

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That’s how we get through grief.”

 Eugene O’Neill

 

 

Adoption & Mast Cells…What’s the connection ?

ImageMast Cells…It’s hard to believe those tiny little cells can cause so much damage, but they do.

 I just returned from a conference where specialists of this rare disease update us on the latest developments in research and treatment.  The wonderful part of this, is that we get to be with others who suffer with this life changing disease.  To be surrounded with the love and validation/support of those who “get it” reaches deep inside and warms the heart..  The information gained is invaluable but the being with your “tribe” is priceless and treasured.

 On the outside, most of us don’t look ill…making this one of those “invisible illness’s” that because people don’t see what’s going on inside, they don’t understand how sick we really are.  

They don’t see the excruciating pain deep inside our bones and joints, the nausea and vomiting along with the BigD, as they call it.  They don’t see the overwhelming fatigue that feels like we are dragging a thousand pound ball chained to our bodies.  They don’t see the flushed face and if they do, they say how good our colour is.  They don’t see the chills and faintness, the swollen eyes and lips or the spots hidden so well.  They don’t feel the urgency and fear when we know its an epi pen moment and we are faced with the increasing symptoms alone and wondering if this time will be worse or if it will be enough.

 They don’t see, they don’t listen, they don’t understand.  How can they?

To be enveloped in the love of your “tribe” is amazing.  The unspoken understanding for quiet time, fun time, support time, validation time is just there.  You needn’t even ask, it’s just there, as if there was an invisible connection between us.  Tears and laughter flow together and it’s all quite acceptable and acknowledged as part of the journey.  A simple smile or a few words of reassurance are given freely, without question because they just know.

I was overwhelmed with the astounding compassion between souls who are all ill.  You can feel the energy of understanding when you walk into the room a little bit slower with red rimmed eyes and swollen lips.

 Such strength and endurance is astounding.  We fall and get up over and over with an outstretched hand there to assist, even if it is from afar.  You learn to appreciate the good moments,  The times you can laugh.  The times you can walk a block or simply get off the couch.  The times when you can eat and not feel sick.  Everyday things that healthy people don’t have to consider. The list is endless.  

I can list the exact moments in time, the experiences, the stressors and traumas that led to my mast cells being bumped up a notch until they went over the edge into the mastocytosis abyss.  Most of us can, and it’s devastating to look back and know things could have been better, different perhaps, had we had the knowledge of what was going on.  Still, we smile for now, for today, another day.

Learning to identify specific triggers is crucial to mastering the act of decreasing degranulation.  Lifestyle changes are necessary. Jobs, friends, family may be lost, The specific foods, the exercise and rest, learning balance and caring for oneself play a huge role of living with chronic illness.

 There is a grieving period when you realize your life has changed forever.  Just as in death and dying, you go thru the five stages of transition.  Denial, Anger, Bargaining, Depression and finally Acceptance.

Meditation is a daily practice for me.  Being mindful of each moment and how you think about it.  The Power of Positive Thinking is probably the most important piece of living well with chronic illness.  If we begin to look at alternatives to western medicine we discover how the body is innately equipped to play a role in the healing process.  How love and community may be more important than any drug.  We need our “tribes” to help nurture and heal us.  We also need to participate with our own self talk and beliefs and not get sucked in to the “sick role” that many want to stay in because it’s more comfortable.  There is no healing there…only suffering and sadness.

So, the title reads Adoption and Mast Cells..

This past week as I was recouping from my travel to the conference I was unable to sit at the computer and write the words I wanted to say.  I began to see the similarities between my journey with adoption and reunion and my journey with mast cell disease.

I could go back over the words above and take out mast cell and rewrite adoption and it would still be  applicable.

.ImageThere is a timeline for both.  It took me  50 yrs to find my biological family and just about as long to put the pieces of my medical puzzle together after finding out about my genetic history..50 yrs of not knowing, not having the pieces to heal both the physical, and the deep adoption loss of the primal wound.

Just as my overactive mast cells have affected every aspect of my health so has adoption.  Mind, body and spirit.  Combined, they were a time bomb ready to be set off during reunion from stress, grief and loss.  Look at how many systems are affected by mast cells and know that my being given away affected just as many parts of me… unknown to me at the time but felt just the same.

To look at me you wouldn’t know I was adopted, nor that I have a disease that is destroying my organs.  It’s all invisible, this pain, this illness, this trauma and yet I have been profoundly changed, altered, broken and torn apart again and again by both.

 I stand tall and fight my battles alone in a world that doesn’t see either.  How could they?

The pain is invisible to most,  The loss and grieving of a life changed, a life not experienced, the 5 stages the same.

I experienced both at the same time and it dropped me to the floor where I lay in fetal position for all that was lost, all that would never be.  Looking back, I see my whole life has been dictated by the search for answers, both to my health issues and my search for my tribe.  For where I belonged.  For where I would get healthy and know love.  In my first memoir Finding Heart Horse, soon to be birthed, lies the story of survival and search.  Little did I know at the time how important that search would become.

As with my mast cell history, so can I identify the specific moments where my adoption altered my life, filled it with heartache and pain, leaving me living in the duality of the adoptee realm of identities.  On the outside I was a well respected RN, working in a high stress job, thinking I was doing the best for my daughter.  I wanted her to have the life I never had, the home, the friends, the stability, the love.  No one could see on the inside there was the unknown.  The trauma filled ghost. The invisible person who had no identity,  The tortured soul who experienced trauma after trauma and yet kept going.

Do you see the connection?

It was the same with the slowly building mast cell disease.  Being diagnosed with many box labels and knowing that somewhere out in the world I would find the missing pieces but until then, I just had to keep going.

That deep knowing that there are pieces missing to the puzzle.  The fear of not being able to find them quick enough.  The devastation when I did find them.  Medical history for adoptees is so important and yet, who thinks of it.  No one except the ones looking to find themselves.

Mast cell disease has it’s own tribe.  Adoption has its own tribe as well.   family was supposed to be my tribe, mine.  Where I belonged.  Where i felt loved, wanted and safe.  There are no stronger people than the ones I have met through mastocytosis and adoption.  To go through what we have been handed in this life and emerge with a smile and strength and an over abundance of compassion and love is mind boggling.  To others, these qualities are invisible.  In the tribes, they are powerful beyond imagination.

The journey to health is not an easy one.

 I am not defined by my illness nor my story.  I stand tall as a survivor and thriver despite the odds.

 I have walked through the fears and pain emerging on the other side wiser, stronger and healthier and will continue to do so.

 I am not invisible to everyone.  Only to those those that don’t want to see.Image