Undones, Do You Have Them?

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Having faced death several times myself and recently experiencing the deaths of two very special people, I find myself preoccupied with loss.

Adoptees tend to do that of course. Our beginnings in utero had already started the prewiring necessary for our survival which was begun with loss of our mother.

Of course, I’d like to be thinking of sunshine and rainbows, but the reality for all of us is that death is inevitable. It could be tonight even.. It will come whether you’re ready or not. That is a certainty and we don’t have many of those in this life.

My life has been filled with loss as most adoptees are. The loss of our mother, our family, our heritage, our genetic markers, our family dynamics. Each future loss such as the recent losses I’ve mentioned open that old wound.

Then of course you add in the numerous losses one tends to accumulate over the years and suddenly life appears to hold nothing but darkness, silence, the sound of tears dropping, emptiness, loss of health. Living with an illness that could at any moment take my life brings it all to the frontline.

Being a practicing Buddhist I’m well prepared for the inevitable. I don’t fear death at all and in fact, at times would welcome it. Most people living with Mast Cell Disease can attest to that when you’ve spent days in excruciating pain, vomiting into a pail, fighting the anaphylaxis demons with epinephrine.

That in no way means I want to die. It means I believe one has to prepare for their own death in order to live. A close encounter with death can bring a real awakening, a transformation in our whole approach to life.

The Nature of everything is illusory and ephemeral,

Those with dualistic perception regard suffering as happiness, Like they who lick the honey from a razor’s edge. How pitiful they who cling strongly to concrete reality:

Turn your attention within, my heart friends.

The above is a verse of a poem by contemporary master, Nyoshul Khenpo. It clearly outlines the need to reflect deeply on impermanence. It’s very difficult to turn our attention within and so easy to allow our old habits, our set patterns to rule us! To reflect on this, slowly brings us wisdom. Watch how you repeatedly fall into the same old habits that always bring you suffering. Again, and again, and again. With observance and practice we can slowly emerge and change.

Your Undones…

Your undones are that persistent, niggling, feeling that is sent to you from The Universe, Your Higher Self, how ever you think of what is “out there”. It’s telling you that you have unfinished business. Business that will pester you, stress you and take your energy until you complete it. Mental nags are undones. They remind you that you have broken agreements with yourself and time and time again you’ll notice they rob you of your self respect. Creativity…gone. True joy…gone. Internal peace…gone. You are able to get back all of those things if you complete your undones.

Right now in your mind I’m sure you can identify several. I know I can. They could be unresolved conflicts, withheld forgiveness, appreciation not mentioned, love not given, goals not met, promises not kept. Your life is probably full of many more not mentioned. They come in every size, shape, and in each and every area of your life. Check your basement. It’s probably full of undones.

Let this sink in…You won’t find peace until these undones are completed. Just remember, life is short and very unpredictable.

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

 

 

Telling Your Story

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THICH NHAT HNAH’S WONDERFUL CALLIGRAPHY FROM OPEN HEART, OPEN MIND RETREAT 2011

So, it’s been awhile since I blogged. Each day when I sit to write I find the day has been taken up by Finding Heart Horse and The Wall of Secrets, the two memoirs on their way.

Finding Heart Horse is now in the publishing stages with Balboa Press, a division of Hay House. I had no idea how much work was involved even before you can submit a manuscript and have spent weeks trying to get it all in place. The pictures, the formatting, the words and finally I had what I considered to be the full file. My story all typed neatly in a specific package, specific file as requested.

My story. I told my story! Inside my story is a hundred other stories each one begging for validation, for someone to hear, for someone to see, for someone to understand.

Isn’t that what we all want?

To be heard. To be acknowledged and validated especially when your story involves the pain of abuse and violence, adoption and trauma upon trauma. We want and need people to listen.

This blog came about because for me, after 7 yrs of writing these books, working through each and every story emotionally, I felt free. I was no longer my story. I had to roll in the gutters of Hell along the way. Covered in the dirt and grime of life stories I emerged feeling lighter, integrated and scared. It was on paper with all of the guts and gore and pain endured. Not easy by any means. To walk through those stories as if I were there in time was beyond excruciating . Sometimes, in disbelief I would reread and reread and wonder how I had survived at all. I was FREE.

The truth will find us out, but it will also set us free. The trick is…you have to tell the good and the bad. The blog came from a few requests by the publisher to “retell” a rape scene because I was only 16 at the time and underage. I also had to get rid of what I considered to be some of the most important pictures.

My immediate reaction was one of anger. I mean, come on! A rape is a rape is a rape no matter how graphically you describe it or blankly leave out the guts and gore. I felt unheard, unvalidated, unseen and dismissed as I was so long ago.

It appears then, that while most of my story is on the paper and out of “me” therein lies some residual triggers and why wouldn’t there be?

I lived with secrets for 5 decades. You can’t change those deeply ingrained emotional triggers overnight. After sitting with these feelings and recognizing where they came from I was able to let go and rewrite the scene with less graphics and know I am heard. I hope they know that this is only one of many other scenes to follow!

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THICH NHAT HANH
OPEN HEART, OPEN MIND
2011

So I sat in reflection of how important it is to Tell Our Story. How important it is to listen to others tell their story. To listen with Compassion.

We all long for connection. When you tell your story it resonates with others. Person to person we connect, not in our pain but in the fact that we are healing, growing together by honouring each others stories and actually “seeing” the other person. The real person, all of the person, the good and the bad and ugly, if there really is such a thing. We are the ones that put those labels on.

In the superficial world of everyday life, people prefer to show their best side and hide any flaws out of fear perhaps or societal requirements. It’s when we tell our stories with truth and honestly, its when we make mistakes, or have to apologize or speak of failures that we become truly human and we connect with others in an authentic manner.

I see now in a different way Finding Heart Horse has blessed me with many lessons and will continue to do so as I work through each part of this publishing process I still need to work on healing my heart and telling my story is a huge part of the journey, I have to dig through the layers of hardened emotions if I want to rescue my heart that has so many cracks and patches already.

We all have these scars, but until we can look at our past in the eye and not blink, it will always be telling us to be less than we can be.

We carry our own pain but also part of the cosmic pain that connects our spirits together.

We really are one family.

Because we have room for our own pain, we have room for the pain of others and we can actually help to bear their suffering. Only then can pain be transformed into joy. When one heals, so does the rest of humanity, And when humanity heals, so will the planet.

Tell your story. Tell it in whatever way you choose. I’m listening with compassion.Image