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.

Down The Rabbit Hole With ICU-itis

“ICU psychosis is a disorder in which patients in an intensive care unit experience anxiety, auditory and visual hallucinations, paranoia, agitation and disorientation”

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November 22nd 2015 my life changed forever…again.

Exactly one year ago today.

It’s taken a year to sit with  the almost daughter, the experience still so vivid.  I can’t wrap my brain around everything that happened on that day and for weeks and months after. I’ve wanted to write a blog about my experiences. It’s an experience that family and friends are never prepared for and from a patients view terrifying. There are simple things you can do to help alleviate someones terror, someones hallucinations, delusions. I’ll tell you what those things are at the end.

I woke up with one difference that day. Centralized, excruciating, left, lower quadrant pain. Pain so severe that with any movement at all, a scream, dripping with tears would escape. I have a very high pain tolerance and dealing daily with a mast cell disease you are used to pain and feeling quite ill.  My rational brain said go to the hospital, the nurse/patient thinks it will go away.

Being chronically ill with a complicated mast cell illness along with ME and Fibro you tend to forget what normal is, what not being sick is, what acute pain feels like vs the constant deep bone, muscle and joint pain of disease.

By noon I was bleeding heavily rectally, in so much pain I couldn’t get up from the toilet. Within minutes, my friend and the ambulance arrived. They are familiar and know my mast cell protocol by heart.

This was different. We all knew it was bad. No words needed to be spoken.

 I had been feeling worse the past few months.I thought it was my mast cells acting up. I had recently started a continuous Benadryl pump with hopes of keeping my mast cells in check and me out of anaphylaxis and the hospital.

The diagnosis: pelvic abscess, bowel perforation, partially collapsed lung and sepsis.

Very quickly things became a blur. CT’s with contrast, meds, IV’s, surgery the only option. The surgeon informed my daughter and friends there was a good chance I wouldn’t make it through surgery. My systems were severely compromised due to the sepsis and of course, mast cell issues adding to the complexity.

After experiencing respiratory arrest in the OR and with continued problems with my oxygen levels I was sent to ICU. My O2 sats were 82%@7L, systems unstable, survival questionable.

Day after day, hour after hour,

moment by moment,

systems stopping and starting

Days passed.

There were brief moments of awareness, of tears and fears and then quickly I would be put back in the twilight zone. 15 IV bags being controlled by nurses, each system tweaked by moments.

Life and Death in The Rabbit Hole

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Critical Care would continue in the 3 bed step-down unit.  Constant monitoring by machines and nurses. I emerged from the rabbit hole for brief moments. I lay there attempting to reorientate myself. I tried to check out body parts but I couldn’t move. Tubes and bags hissing and whooshing were everywhere sucking out toxins and spitting into collection bags of assorted sizes.

I was very much in the danger zone, no guarantees of tomorrow.

Pale beige curtains surrounded me. I had my own tiny cubicle. Stains from previous tenants moved changing patterns as I watched in horror.

In Critical Care, the lights never go out,  noise never stops,  call bells constantly ring, the retching, the demands for pain meds, the cursing of another patient in The Rabbit Hole. Reality fades in and out like waves..

I hear them. I know….

They’re talking about me!

Stop whispering! Please!!

I know what you are thinking. It’s not true. They’re  going to take pictures of me. Their friend, I know all about him…he’s the guy that has been stealing medication from patients drawers and little old ladies purses while they wait for answers about their loved ones.

It’s true.

I hear them talking.

I whisper when my friends visit. Pointing, desperately gesturing in attempts to have them make sure my purse was safe…zipper side at the back. They don’t understand my desperation but they patiently show me that everything is there and quietly close the drawer exchanging looks of confusion.

A constant stream of doctors, nurses, phlebotomy staff, physio, dietary, more blood work, new bags of nutrition added to the several already hanging. A whirlwind of medical necessities keeping me alive. To them, I speak appropriately. I know my eyes show my terror. No one asks.

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 I can’t tell them about the guy across from me and his friend and the many changing patients beside me. I know they wouldn’t believe me. Each one is part of the rabbit hole. One is chanting Native prayers and putting spells on us with his computer coding which I know nothing about. The other, screams obscenities while he pulls out tubes, blood and feces splattering over the floor oozing under my curtain.

At night, the sounds are deafening, bells ring louder, a tangled tube is pulled out. I call for the nurse to help him.  I can’t yet move myself. My left side is so swollen, hot and painful, from shoulder to hip. My trusty mast cells coming to the rescue in crowds, building the fluids and swelling until it looks like a raw slab of meat plastered on my side. I drift off and awaken to screaming. My voice, screaming for help. The nurse said it was night terrors.

They can only get blood out of my foot. My body hangs on to each drop with vengeance. I don’t remember how many times I was taken down to have CT scans with contrast to monitor the abscess and lung. No easy feat considering the tangled puzzle of tubes and machines. The people in nuclear medicine wore makeup..heavy makeup.Almost like clowns I thought. I think they were making a movie or something. I didn’t dare ask. I was always left right by the nursing station where the other patients in their tiny cubicles could see me. I could hear the whispers between them. They were laughing because my book was on the TV but they didn’t believe I was the author. I didn’t correct them. I couldn’t look at them so I lay quietly, tears rolling down my cheeks, eyes closed. Even then the constant movie that played in my mind didn’t stop.

And no one knew.

So many other stories, all with a few pieces of truth. Helicopters so close I could hear the pilots and nurses talking. I was sure they were getting rid of me. The drones that my roommate would throw over and under my curtain. The look on certain nurses faces when I rang the bell. The chaos in the hall. They had placed tape around an area in front of the door. I couldn’t understand. I slept with my buddhist mala for safety, reciting mantras to keep the constant voices subdued in my head. It didn’t really work.

I tried sending random garbled messages, despite the fact I couldn’t see my phone letters. I had to get someone to help me. I managed one message.

All it said was HELP. No one came.

I could feel the energy drain out of me. The simplest conversation left me feeling spent, drenched in sweat, wanting it all to end. The pain was endless and uncontrollable. It was like being on a bad acid trip back in the 60’s. One that didn’t end.

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I don’t scare easily. Or at least that’s what I thought. Until the Rabbit Hole sucked me in, that is.

I’ve never been so terrified, nor felt so alone as my month-long journey dragged on.

You can experience flashbacks for up to a year and it creates PTSD. Another experience to add to my already full box with that label.

The prayers, the energy and most of all, my two friends pulled me thru. It’s times like this you find out who your true friends are.

I wanted to write about this because it’s not uncommon after someone has been in the ICU for a while. The multi cocktail of medications that keep you alive but living in the Rabbit Hole can often create ICU psychosis. Having been an RN for many years, the last 20 spent in Acute Care Psychiatry I felt I understood my psychotic patients. I didn’t. Now I do. It’s so real, so frightening, so isolating. My heart goes out to those that suffer with psychosis, schizophrenia or anything that creates a Rabbit Hole Experience.

Here are a few simple measures that help someone who is psychotic: Gentle reassurance that they are safe. Gentle touch, holding a hand, words of love and safety. Gently pointing out things that are real such as my “drones” that were sprinkler heads.

Understanding. Compassion. Love. Your presence, your composure and quiet voice.

This year has been challenging. Physically and emotionally. My Mast Cells are still not settled creating a physical nightmare. Some days, the tears flow freely and thoughts wander to places I’d rather not go. I now have a piece of my bowel on the outside of my body. My world is dictated by my medical issues and mast cells.

I’ve spent a year in The Rabbit Hole. I’m so tired, so sick. My life has been reduced to living in a bubble and hospitalizations.

I’m trying to find my way back.

Can you lend a hand?

Loss…..When Your Heart Is Breaking

IMG_1488“Don’t grieve. Anything you lose comes round in another form.”

Rumi

I believe that.  I’ve been witness to the magic of allowing yourself to believe.  Many times over.  In fact, those feathers and many more in my collection are just one sign that someone I loved dearly is close by.  How precious is that?  To know you never lose the ones you love.

Many of us, myself included have experienced Loss and Grief recently.  It comes along when you least expect it and grabs your heart and twists it wringing out the tears leaving you raw and open.

As a former RN I believe in the Kubler Ross grief cycle.  Not only for the loss of a loved one but for any loss.  For those of us with Mast Cell Disease, Cancer, EDS, any type of debilitating illness or injury.  Your life changes and with that..you experience loss of many kinds.

We all experience grief in our own way.  It may come in waves and toss us around like tiny birds on an angry ocean.  Or perhaps it sits there, hidden until something triggers it and then it grabs our mind and heart squeezing until the tears are forced out.

According to Keubler Ross the five stages are Denial, Anger, Bargaining, Depression and finally acceptance.  Not in any particular order, perhaps jumping back and forth for however long it takes to get to acceptance and peace.

As a Buddhist I believe in Death and Impermanence of Life.  It’s part of the natural part of life, however, death is not the end of life.  It’s merely the end of the body we inhabit in this life.  Our spirit remains and seeks out new life.

When we come to the last moment of this lifetime,and we look back across it, the only thing that’s going to matter is,

“What was the quality of our Love?”

Richard Bach

As adoptees we arrive in this world already burdened with the unbearable loss of our mother.  We spend our lives in a place of darkness and sorrow, sometimes not even recognizing the depth of pain we carry.

It doesn’t matter that you understood that your mother was unable to raise you or she thought she was doing what was best for you, or perhaps too young and under pressure.

 IT DOES NOT MATTER.

She let go.  The whole family let go. They all let go.

“They” will never understand.  “They” were never let go.

It becomes a family of pain.  My Mother shut down.  She carried “the secret” inside her tortured heart for years.  My heart goes out to her.  The pain must have been unbearable.  I felt it the moment I gave birth to my daughter 36yrs ago.  I looked in her eyes and immediately felt my Mothers pain.

Adoptees never completely heal.  Neither do their Mothers.  After search and reunion even if it goes badly we at least have the potential for growth.  We have a chance to move from the traumatized self to the revitalized and transformed self.

Tomorrow is my Mother’s birthday, five days before mine.  She died a short 9 months after I moved across Canada to get to know her.  I found my Mother and Lost her all in the same breath.  I was so filled with grief and pain from the first loss and the loss at her death my Mast Cells took over my body and sent me into the mast cell abyss from Hell.

Her family will grieve for her.  They will reminisce with each other of the memories that holds them together as a family.  I will grieve for the loss of what could have been.  For the loss of heritage, genetic markers, memories that bind, love that stays, family that never was.  It never goes away, this grief.

To all of us in the past weeks that have experienced loss,

I dedicate this blog to you and those we have lost.

Look around you…notice the small things..the wind blowing softly past your ear.  The butterfly sitting on a flower.  The soft rain hitting window panes.  The brilliant red leaf as it flutters slowly from the tree.

YOU ARE NOT ALONE

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