Tag Archives: fear

The Ultimate Betrayal


I cannot imagine any human betrayal as excruciating as a self-betrayal.

Imagine… your body, unbeknownst to you, makes an arbitrary decision to start producing antibodies, that will attack its own (YOUR OWN) tissue!  This attack will ultimately lead to the deterioration and in some cases to the total destruction of such tissue.

Wait… What?  Why would my body want to do that to me?  Aren’t we in this together?  Aren’t we a team?

Well, guess again…  because that is the hideous nature of an auto-immune disease/disorder.

It’s you, stabbing yourself in back, selling yourself out, double-crossing yourself.  Gives a whole new meaning to the phrase, “Go f**k yourself.”  

An auto-immune disease/disorder develops when your immune system, which normally defends your body against disease, decides that your healthy cells are foreign. As a result, your immune system then attacks the healthy cells.


The ultimate betrayal.

You’d think this was a rare occurrence, right?  I mean only a freak of nature could have it’s own body decide to turn against itself, no?

Well, according to the American Autoimmune Related Diseases Association (AARDA) there are approximately 50 million Americans (20 percent of the population or one in five people) who suffer from auto-immune diseases.  Women are more likely than men to be affected; some estimates say that 75 percent of those affected, some 30 million people, are women! 

Ladies… What the hell are we doing to ourselves?  Or, maybe a better question is what the hell are we not doing for ourselves, that we should be doing? 

There’s a lot of speculation out there as to exactly what’s causing these deviant auto-immune diseases/disorders, but I don’t think a conclusive verdict is in.  The frontrunner, proposed triggers include:  

  • 1. Gluten
  • 2. Gluten-free grains
  • 3. Quinoa
  • 4. *Stress
  • 5. Toxins
  • 6. Sugar
  • 7. Chocolate
  • 8. Dairy
  • 9. Nightshades
  • 10. Small Intestinal Bacterial Overgrowth (SIBO)
  • 11. Weakened Microbiome (our highly sophisticated gut ecosystem)
  • 12. Leaky gut syndrome

*Unfortunately, not only does stress cause disease, but the disease itself  also causes  significant stress in the patients, creating a vicious cycle.  {Stress as a trigger}

Truth be told, I think there may be more possible causes, than there are auto-immune diseases/disorders! 

So, we (women) are a competitive lot, huh?  Just look at us competing with the men for all of the historically “male,” causes of death.  According to the CDC, the Leading Causes of Death (LCOD) in females, in the United States are as follows: 

…and now, it looks like we’re leading the pack in the unwanted acquisition of these complex and monstrous auto-immune diseases/disorders too. 

I don’t have any answers.  

In fact, I have unwittingly betrayed myself…  I have not one, but two auto-immune diseases that are kicking my ass! 

I’m embarrassed and hesitant to admit it, but this is the hardest “shit” I have had to deal with, EVER in my entire life.  And that includes dealing with the long term illness and subsequent  death of loved ones, dealing with having a child diagnosed with cancer, heartbreak, divorce, miscarriage, and marriages to assholes, you name it I experienced it! 


It feels like I’m in battle; I’m fighting for control of my body, my mind, my very being. The problem is, I’m in a battle against myself. 

How do I even fight this fight?

the_monster_in_me_by_autumnends Illustration by Anita Kolsen



Why yes, this is in fact an actual photograph of me holding onto what is left of my youth, my good health, and apparently a false sense of dignity.

The origins of the word metamorphosis are tied to the Greek word for transformation.  Transformation, is defined as a process by which one figure, expression, or function is converted into another one of similar value.  

I still remember stumbling across that first abyss, which turned out to be my first  metamorphosis;  losing the innocent and free-spirited essence of that young, prepubescent being.  Semi-realising that from a particular point on, I would be forever changed; knowing I was to be redefined, re-labeled and judged in my success (or failure) as a female, a woman, a sexual creature, a partner, or even mother!    

The changes that were thrust upon me way back then were much more abrupt and hideous than the ever constant, more subtle changes I have experienced in the last decade.

Back then, there were bumps and curves, pimples and strange monthly occurrences that sent my young, naive, free-spirited self into hiding forever!

A similar, but much different life force, emerged on the other side of that chasm;  she was quite peculiar, self-conscious, uncomfortable in her own skin, and wholly embarrassed by her very existence!

It took a long time for me to come to grips with that transformation and to shake off the grief and feelings of loss I had for that innocent lost in the process…

I found the whole experience, nothing short of heartbreaking. 

Years later, having reluctantly settled into my new, more womanly aura… I unexpectedly discovered it was time to transform once again.  This time, the evolution transformed me from a young, self-confident, vibrant, sexual creature into someone more gentle, mature, loving, giving and maternal.

Becoming a Mother was one of the most phenomenal sea changes EVER!

My entire existence took a full 180º and everything that I thought I believed about myself, about life and about unconditional love came under profound scrutiny and had to be  reconsidered, re-examined, re-defined and re-evaluated.

I found the whole experience, nothing short of miraculous. 

However, with the day-to-day drudgery of life, work, routine, boredom and sameness…  I  soon settled into this transmutation and it too became rote.

Years passed. I became numb, stagnant and seemingly unaltered.

Then, slowly, indistinctly, almost overlooked by me a new and quite insidious transformation began to take place; MENOPAUSE.  The biological clock stop, climacteric, the change of life.

This mutation of me was long and arduous.  It took its toll on me over many years.  It didn’t help that I was experiencing complex grief after having lost my brother. That just exacerbated the entire, relentless process.

As I teetered on the edge of this vortex, I could actually feel myself slipping away;  my youth, my vibrancy, my essence…  it oozed out slowly from each and every pore of my being into the dry, dead earth.

I found the whole experience, nothing short of hell.  

Ahhh, but alas, as all things do… this too passed.

I made tentative peace with the fact that I was ageing, I accepted the benefits in realising there would be no more children and I tried to see the humour in the fact that my body parts had acquired “minds” of their own and that “Yes,” even my spectacular breasts, were in fact subject to the laws of nature!

Reaching my 60s wasn’t as bad as I thought it would be.  I didn’t feel  particularly old, I didn’t think I looked particularly old and I didn’t have any of those pesky illnesses that  sometimes pop up when you’re in your late 50s or early 60s.

Things were okay… I felt like I was in control and cruising into my “golden years.”  

I would surely die before I got really old or god forbid sickly, right?  (See previous thoughts on my “best laid plans” to grow old gracefully >>> https://wp.me/p4O3T4-1Gn

Well, we are now a little more than 3 years on and as my Mom used to say,  “…the best laid plans of mice and men.” 

It’s a bit sad, somewhat scary and surprisingly liberating to write this next sentence…

“I truly believe I am standing on the threshold of what will be my final metamorphosis.”

I foresee three messy, overlapping, intertwined stages;

Old age.

Ill health.


The void I stand before now is, in and of itself, quite unique as I know I will eventually transition through to another place/level/state/consciousness… but I have absolutely no idea to where I will transition or what I will transition as (if anything);  but it is, to be sure, my final transformation.

Having recently lost the last surviving member of my original childhood family, along with turning 63 and being diagnosed with, not one, but two auto immune diseases that are quite literally kicking my ass, I think about old age, ill-health and death a lot!

I can no longer pretend that I will be unaffected from the ravages of time or that I, simply because I have willed it to be so, will be spared old age and ill-health and die gently and easily in the middle of the night.


It’s far more probable that I too will have to navigate this black hole of uncertainly, deal with my frailties and accept the indignities of my own humanness.

Am I ready?  No

Am I scared?  Yes.

Can I do this?  Absolutely.

Why?   … because I believe this experience will be nothing short of mind-blowing! 



Back to the Business of Living


With Arielle’s health crisis on somewhat of a more even keel for now, it’s time for me to get on with the business of living my life.  Oh, don’t get me wrong, this doesn’t mean I won’t be the annoying, overbearing, doting mother I have been, but will perhaps “dial it down” a bit and turn my attentions inward.

Now, more than ever I need to get back to the business of living my life.

You see, the last few months were supposed to be totally different… but isn’t that just like life, to take all of your well thought out plans and just fuck with them?

On May 3 (after 33.5 years) I left my job at American Express; I walked away, with intentions of starting a new life; a life with real purpose and meaning.  It was a bittersweet departure, because although there were many people there who I loved and cared about, the work was no longer fulfilling and the stress and political bullshit had taken a toll on my health. I walked away not knowing what I would do, but absolutely sure it was the right time to go and that there was something more important waiting for me. As it turned out, the timing was perfect and there was something much more important for me to do… 8 weeks after I left American Express, Arielle was diagnosed with cancer and my life was turned upside down!

However, during those 8 weeks and through a series of very fortunate events, I met some fascinating, beautiful, amazing people (you know who you are!) and was introduced to some new ideas and concepts about living (and about dying),which had sparked a new life and breath into me! The pieces of my new, purposeful life had all started to fall into place.

So now, it’s time for me to go back to the business of living my life and to continue to gather those bits and pieces. I need to pick up where I left off (before the cancer) and continue on that path, to see where it leads.

This blog has served me well,  as it has allowed me to rant and rage about my daughter’s cancer; it has taught me more about myself than I ever would have dreamed possible; and most importantly it has shown me just how much love, kindness and compassion there is out there, within all of those who surround me (You know who you are!)  The outpouring of love and concern for me and my family has been overwhelming and for that I thank you… I may never be able to pay you back, but I can certainly “pay it forward,” and that I promise to do!

I’ll continue to post updates about Arielle’s heath, because I know many of you now have a vested interest (Thank You!), but will resurrect an old blog of mine, titled “Organized Chaos,” (that title is as appropriate now as it ever was!) and will post there about the absurdities and discoveries I make about me new life.


Chicken, chips and chemo


Yesterday was a long day. Headache, upset stomach and a general feeling of fatigue and tiredness set in.  Arielle didn’t feel too great  either!

Her BEP chemo stared late in the day yesterday and since it’s  actually 3 different chemicals administered individually it takes  over 10 hours!  They started around 5:00 and didn’t finish until almost 4:00 am! Needless to say the woman/child was exhausted, whinny and cranky.  …and rightfully so!

I tried to get her to eat something. Fruit, oatmeal, yogurt, toast…. There was nothing that sounded good or that she wanted.  Apple juice was good, as was flavoured water.

A disagreement  with the kitchen lady started the morning off on a bad note. Feeling crap, Arielle hadn’t looked at the menu, so when the lady came around to take the lunch order and Arielle wasn’t ready, all hell broke loose.  Being of Sicilian heritage and my daughter, it should be noted that once Arielle is pissed, she’s pissed  (to my English friends, not drunk, angry. ” Forget it, I don’t want anything!”  …and with that Kitchen Lady called her bluff and walked away!  Okay, now this shit gettin interesting!

When lunchtime did come around and  Arielle’s hunger had won over her pride…. I heard   ” Mom you know what I’d really like… Chicken nugarts and chips.” Horrified, I tried to talk her out of  this request and into something more wholesome and nutritious, but she wasn’t having it.  After a brief struggle with her and with myself, I left the hospital and found the nearest fish and chip joint.   ” Yes, one order of chicken nugarts and an order of chips, please.”

She ate and enjoyed every bite…. Much to my dismay.

With lunchtime behind us we’re quietly waiting for the chemo chaser, which will start at 4:00.