Who Stole My Life?

Imagination is the first step toward action. You have to be able to hope before you move forward. Otherwise, you are always acting out of fear.

— Gloria Steinem

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I’ve been missing.  Maybe you noticed. Maybe you didn’t. I did.  I really noticed. I missed my writing, my friends, my life. I’ve been in and out of the hospital. Yes, the Mast Cells have been dictating my life…again, still.

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Not long ago I was in India walking the streets of Dharamsala. I remember the energy of chanting with the Monks at Sherab Ling Monastery questioning if perhaps I was finally home, and if I should stay.You could touch the energy it was so powerful. It felt so right. I remember the smells, the people, the traffic and chaos. I remember this last part of my life.

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Way before that…I had a life. I remember running miles on concrete floors as an RN, handling life and death, split second decisions while multi tasking a hundred other things at the same time. I loved it.

Even before that…I had a life. I remember jumping out of bed in anticipation of what my day would bring. What wondrous and fun things my little girl and I would do that day.  I remember laughing and dancing in the kitchen while baking cookies with her. I remember her giggles when i acted silly.

Even before that…I had a life. I remember riding my bike from East Toronto to West Toronto and not being tired. I remember skinny dipping at “The Farm” in Northern Ontario at midnight, candles floating on logs and jugs of peach schnapps, fish nibbling at my toes.  I remember laughing until I cried, jamming in the farmhouse, playing Teddy Bear’s Picnic to the bears on the piano way out in the wilderness all alone and joyous in just being. I had a life back then. A big life.

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Who Stole My Life? Where did it go and when exactly.

I had a life, a good life.

Erich Fromm says:

A mothers love is bliss, is peace, it need not be acquired, it need not be deserved. If it is there, it is like a blessing, if it is not there, 

 it is as if all thebeauty had gone out of life. 

For adoptees that is just reality.

Not long ago I found my birth mother and siblings. After a lifetime of searching I found my family. I was so excited to begin a new life in a family, in my family. Sadly, my birth mother passed away before we had a chance to be mother and daughter. My siblings have history that will always be their’s. I understand that.  I thought we could build a history and make memories. Apparently not.

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Every time I go to the hospital I lose a bit of myself. Health changes quickly, time is precious and treasured. As I write this, I realize I did have a very big life. If you’ve read my two memoirs:

Finding Heart Horse, Memoir of Survival

The Wall of Secrets, Memoir of The Almost Daughter

 you will see how much life I packed in to a relatively short time. Perhaps that’s why I feel lost. I’ve had to drastically change the way my life works.

I’m creating a new vision for my life.

It wasn’t stolen after all, it’s just changed.

I’ve come full circle.  My plan on retirement was to work with Street Kids and now with the books and working with Covenant House Vancouver, I’m doing just that, only in a different way.

My day was spent on the couch feeling quite ill and in pain but imagining scenarios for many things. Imagination nourishes us spiritually while creating dreams that feed our soul. Forget the fears and the voices from the past and live from your heart, even if it has to be from the couch. I used to live from ego and now I live from my soul. The pain of the past years has given me this gift.

With gratitude Im taking my life back.

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Tethered….Are You?

Oxygen tubing...50ft...TetheredWhen I was thinking about writing this blog, I of course was focused on the fact that I am now

TETHERED

…permanently to tubing supplying my air. 

The definition of tethered is:

1. a rope, chain by which an animal is fastened to a fixed object

2. to fasten or confine, restricted by bonds

3. at the end of one’s tether=resources, patience or strength

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The subject of my words was to be my battle with Systemic Mast Cell Disease in order to educate. I feel all of those examples above. Out of the the last few months only a couple of weeks have been spent at home.  I was tethered in a hospital to more than one tube.  My goal was to describe my experiences of hospitalization and the reality of now requiring constant oxygen because mast cells have taken over a pieces of my lungs.  One more organ in combat with mast cells for survival.

IMG_4012IMG_4014This is life now.

Tethered in many ways.

A metaphor for life in general.

Tethered.

To beliefs, to thoughts, to emotions, people, situations.

It all relates to being attached.  This is my new normal.  Just as with each layer of trauma peeled away in my writing of the two memoirs…a new normal emerges.  It really is up to me how to live in this new place.

 It can go either of two ways: curl up on the couch giving in to the idea…or: adapt to life and living, only in a different way.

 To fight and grow and accept what is.  To learn to live around the coils of tubing or thoughts and beliefs and change what I can, when I can.

 I also relate this to living with the effects of trauma.  Adoption, abuse, rapes….  It all ties us to the pain of suffering and if we chose to remain tethered to the past or our thoughts about it and belief systems.

 When we settle into the present moment,

we can see beauties and wonders right before our eyes-a newborn baby,

the sun rising in the sky.

-Thich Nhat Hanh

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When you find your thoughts heading towards the couch, challenge them, ask if it’s really true or can we perhaps do one thing today, even if it’s getting off the couch and moving to the chair.

 

Is it true you are really tethered, or is it your thoughts that are confining you.  I’ve had a lot of practice with challenging my thoughts in the last few years. Adoption reunion, recognizing your deeply ingrained belief systems, pulling them up to examine them like roots on a tree, one by one.  It’s not easy work but then, being attached to something that causes you pain is the alternative.

Toni Bernhard in her book How To Be Sick quotes her favourite Zen Haiku Master, the eighteenth-century poet, Kobayashi Issa.  He suffered terribly with many losses and yet managed to write many haikus, some of which will always bring a smile.  She states, “Zen helps”.

The world of dew is the world of dew

And yet, and yet…..

The last line tells us what we constantly must remind ourselves of…nothing is certain.  Dew quickly changes before our very eyes and so does life.

For those of us that live in a physical or emotional state of being tethered…

Adoptees, Trauma survivors, Mom’s of Loss, anyone suffering…know in the world of Zen there is always…

And yet, and yet, and yet….

Yes, Zen helps.

“dew” can be illness, adoption, trauma…..and yet, and yet….

 

Not Giving Up/In…to Illness

Honestly, I don’t know where to start.

I suppose when that happens, one should start at the beginning. Mast Cell Disease, Finding Heart Horse and book signing or  adoption thoughts. As I sat staring at the keyboard I realized in fact they are all connected, all intertwined in a tangled web inside my body creating havoc at different times.

Perhaps, I’ll do them individually starting with now, right this moment and where my body is physically.

I arrived home from an eleven day trip to Ontario last saturday. Arrived at 11;30pm, was in ER by midnight. The first part of the trip was a book signing with Hay House I Can Do It Conference in Toronto for Finding Heart Horse.  Exciting..yes, absolutely!  I prepared for weeks before-hand, drinking hemp smoothies, resting, taking extra meds pre flight.  I wore my support hose!  I drank litres of water the day before.  I meditated, felt organized and confident that I could do this.  I’ve flown to India for heavens sake…Toronto would be nothing!  My first wake up call came shortly after being in the air for a while.  Planes are acclimatized to 7000ft, usually not a problem for me.  This time, however, I started feeling drowsy, unsteady on my feet, headache, almost nodding off a few times.  Low O2 saturation!  Of course!  If my saturation is low to begin with they drop several points in flight.  Wake up call!

I discovered, I still have a lot to learn in “how to be sick” and live life at the same time.  I’ve always pushed through, gotten things done even if I felt like I was on my last legs and here, this time, I thought I did everything right.

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“There is sickness here, but I am not sick.”

“Of course! There is sickness in the body, but am not sick.!”

Toni Bernhard

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I have repeated those lines many times and contemplated the “I” part.  As a Buddhist, the teachings show “anatta” or “no fixed and unchanging self” so who is the that isn’t sick?  In Toni Bernhards book, How to Be Sick she quotes from a wonderful book that I have read by Joseph Goldstien and Jack Kornfield called Seeking the Heart of Wisdom:

Just as we condition our bodies in different ways through exercise or lack of it, so we condition our minds.  Every mind state, thought, or emotion that we experience repeatedly becomes stronger and more habituated.  Who we are as personalities is a collection of all the tendencies of mind that have developed, the particular energy configurations we have cultivated.

 I was wondering where  went wrong in my planning as I became quite ill I reminded myself that  is nothing more than a thought, or feeling held  so tightly that we believe it to be real.  We are temporary beings, made up of moments that come and go, parts put together and taken down and sometimes, we just don’t have control over what we think we do.

 The above picture was after a night/day spent in the ER with anaphylaxis.  I knew it was coming, could feel the buildup, yet couldn’t stop it.  It took a tremendous amount of medications to stop the process and allow me to breathe.  All done in the trauma room with people grabbing “parts” and starting IV’s, asking questions, taking X-ray’s, talking to each other.  I wanted to scream..wait!! I’m a nurse!  I’m not a patient!  Wait…this isn’t who really am!  But, in the moment it just was….  I was the patient..my body was sick.

Becoming okay, accepting that everything changes whether you like it or not is freeing.  Our lives go up and down, our thoughts come and go, our good days and bad days do the same, sometimes influenced by what we do and sometimes not.

Having an “invisible Illness” is more than a challenge.  Comments are made, judgments rendered if people can’t “see” the inside destruction that is happening.  To stay in a place where you don’t take these things personally is a lesson in itself.

I have Systemic Mast Cell Disease, Dysautonomia, 3rd stage kidney disease and Lung Disease requiring a bronchoscopy.  To the onlooker..on a good day, I look fine.  You don’t see the symptoms in the diagram.  I refuse to give in to the many labels and will continue to live my life as I have, perhaps differently each day, certainly with more awareness, but I will continue.  I refuse to be a victim whether it be from adoption, abuse, rape, and now illness, all of which, I might add…fit together and are part of…

” When we settle into the present moment, we can see beauties and wonders right before our eyes-a new-born baby, the sun rising in the sky.”

Thich Nhat Hanh

By healing our minds and living in the present moment we can not only survive, but thrive.  Even in excruciating pain which is prevalent in mastocytosis, one can ride it like a wave while not berating yourself with the tapes of the old days.  You know the ones..I shouldn’t have overdone it yesterday…I’m afraid the pain will never go away…and many more personal ..should halves, would haves.  If you can just recognize as you wander into those old tapes and bring yourself back to the present moment with a simple word..you will see change.  Focus on your breath..you have to be in the moment to do that.  Meditate, eat well, stay away from stress, be kind and gentle with your body allowing it to rest when it requests…all these help.

 Together we will teach.  Together we will learn.  Together we will find support.  Together we will be okay.

We can do this.

Living with Mast Cell Disease….Coming out of the Closet

ImageI’m coming out of the closet.  Yes you heard me right.  Not only am I coming out of the closet but because I’m doing that inconceivable “thing” , I won’t be “invisible” any longer.

As I was just writing my adoption blog about letting go of who you thought you were, I realized I have an added dimension to the grief and loss and letting go.  Invisible, chronic, Mast Cell Disease.

I have had to let go of the life I had planned.  The life I had worked so hard to get to.

 You know the one.  Where you push yourself beyond the edge doing for others, providing for your kids, saving for retirement so you can travel and enjoy life.  Yes, that one.

 The one that will never come to fruition.

No one ever see’s me sick.  Well, except for my dear friend Susan, who witnessed my Delhi Belly from hell and was such a good nurse.  Other than that..oh yes, and the time I took my daughter to a Buddhist Retreat in Thailand in the middle of the jungle. Climbing a mountain in sweltering heat and humidity wasn’t such a good idea.

I swelled up like a puffer fish.  I thought I was going to explode my skin was so tight with pain that brings tears to my eyes even now.

 I didn’t pee for three days and my lungs were so congested I knew I was as close to dying as I could get in the middle of the jungle. I was prepared to just roll off the floating meditation floor into the lake where the 75kg Thai catfish lay waiting.  What better place to go than on a Buddhist Retreat?

Who knew?  Mast cell disease did that.

 As it’s done with many things in my life.  Surgery to remove the endometrial nightmare in my belly caused me a three months stay in hospital with pelvic abcess, peritonitis, bowel obstruction and DVT’s.

 Who knew? Mast Cell degranulation of course.  Oh, and the time I was admitted to ICU with cardiac issues and eyes like the ones above.  Throw in a standard diagnosis of pericarditis and a stay of 2 weeks.  Kounis Syndrome.  Who knew?  Mast Cell Disease yet again.

 I could go on and on.  I can identify each and every event that relates back to Mast Cell disease.  Only then, I didn’t know.  How unfortunate for me because every “flare” caused just a bit more damage to organs that had already taken a beating from my “FINDING HEART HORSE” life.

This week has been a tough one.  The eyes that I can’t bear to touch and struggle to see the words on the computer.  The unrelenting pain of a total upper body spasm that woke me up last sunday night.  it was as if an elephant was sitting on my chest and I couldn’t move to do anything about it. The accumulation of fluid outside of my cells called  3rd spacing that is so painful.  A whole week spent in agony.  Who knew?  No one.  Not one single person except my “masto angels”.  That’s invisible…

I shouldn’t be like this.  There are thousands and thousands of us out there.  Not just mast cell patients but many such as Lupus, Fibro, CFIDs.  If it was the big “C” or a broken leg people would see. People would be bringing tuna casseroles and apple pies because thats what you do when someone is terribly ill and can’t manage.  Isn’t it?  It’s what I do when I know someone’s ill.

 I haven’t had a tuna casserole since I was seven.

We have to change the way people think about us, the invisible ones.

 That’s why I’m coming out of the closet.  To educate.  To give visuals.  To answer questions.

 To say..hey wait a minute..I’m in pain here.  Just because I don’t look sick  (well, except for the eyes this week) doesn’t mean I don’t exist.

 That we don’t need a help now and again.

 That the medical system doesn’t need to provide the diagnostic tools our doctors need.

 That the medications we need should be available, the emergency rooms aware of what we need done when we arrive in anaphylaxis.  So many more needs I could list.

And then, of course, just how does one live with an illness like this.  One that no one knows exists.  One where alot of the time you don’t look ill on the outside but your internal body is wracked with pain and your mast cells spewing out chemicals causing havoc with your systems.  Your liver, your kidneys, your spleen.  Every part of you, brain included has mast cells that can degranulate and cause problems.

It’s not an easy place to live..this mast cell hell.

 Priorities change.  Friends stop asking you to go places.  You can’t eat out. Your energy is gone before you have your morning coffee.

Your goal is to keep your mast cells stabilized and the slightest change may bring about chaos.

Attitude is so important.  As I was saying in the adoptee blog post…You have to let go of many aspects of who you thought you were.  

Expectations of others has to be released or you will only find disappointment.  It may take the rest of your life but letting go will ease the frustrations.  None of us are perfect.  

Weed out your friendships.  Surround yourself with supportive, caring people who you know you can depend on.  Illness gives ground for prioritizing friendships.  Our energy only goes so far and we need to spend it wisely.

Don’t become your diagnosis.  Believe it or not, inside this illness lies blessings.  Perhaps you haven’t found them yet.  Don’t stop looking.  Find the things you used to love and perhaps you can change things to enable you to do things, just in a different way when your energy allows.

You still have talents and skills even if you’ve had to stop working.  Inside those skills lie things you were never able to bring out before…find them.  I thought I was never going to be able to hang up my Nursing Cap.  I loved my job.  Now, I write books.  I hope to be able, energy willing to do some talks with youth when the books are ready to be signed.  I would have never been able to do this before.  I’m not saying I don’t have days, sometimes more than one where I can’t get off the couch but I hold the possibility of tomorrow being better close.

One of the most valuable talents you will find you have is simply relating to others who are in the same place, with the same illness or even another.  No one understands what we go through except someone else who is going through it too.  Its the same with adoptees.  We can be great support for many, for each other.  Don’t ever discount the importance of that.  

We can choose how we deal with this illness.  We are also allowed to have our couch days.  We have to learn to be as gentle and supportive of ourselves as we are with others.  Throw the guilt away.  It uses up too much needed energy and gets you nowhere.  We are in this together.

Come on…get out of the closet and stop being so invisible.

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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