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.

7 thoughts on “Not Giving Up/In…to Illness

  1. I am not getting your posts in my Reader feed so thought I’d better come over and check up on you–wow. I can’t believe how your trip ended up. I’m so sorry. You are amazing Claire, your strength boggles my mind.Please take good care!

    • Thanks Mandy..
      It’s been a rough week. Hope to get back in the “blog” soon and start on publishing The Wall of Secrets. How come I’m not coming up in your feed? Maybe cause I didn’t write anything! There were pics on FB of the signing but I will write about it hopefully this weekend.
      Thanks for checking in my friend

  2. You are amazing , your strong and I admire how smart and courageous you are in telling your story! A gifted writer! I always find bits of wisdom from your blogs that are just what I needed to here in the present moment! Thank you hugs! Your friend Jeanne

  3. Such excellent advice Claire ! Just this morning Kevin Newman interviewed a lady sole survivor of a large plane crash (many years ago ) .. She has just written a book titled turbulence … Kevin was much surprised at her answer when he asked her about feeling survivor guilt when everyone around her had perished … They had crashed in the jungle … She survived 8 days being pinned under a seat … Her answer was she just “took in the beauty of the jungle “… She even now goes back to that place in her mind for comfort … Even though she was surrounded by maggots and death … Wow ..talk about living in the present moment !

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