Tag Archives: helpless

The Ultimate Betrayal

We-stopped-looking-for-monsters-under-our-bed-whe

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.

Nice.

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! 

THIS IS WORSE.  

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

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Metamorphosis

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.

Death.

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.

Nope.

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! 

#bringiton

 

Back to the Business of Living

herself

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.

Namaste

Big Girls Don’t Cry

cry

Big girls don’t cry. That’s the rule. You know why?  Because Frankie Valley and the Four Fucking Seasons said so, that’s why.

I’m 5 feet, 10 inches tall.  I weigh 165 pounds (or 11.78 stone). I am a big girl… of that, there is little doubt!  So can someone please tell me why I am crying and more importantly, why I cant stop?

Is it because Nick’s upcoming 50th birthday (September 19th) is all messed up and it’s my fault? Probably. Is it because I’m a terrible wife and mother who’s apparently “annoying” all the fucking time? Perhaps. Is it because September 14th is the 6th year anniversary of my brother Charlie’s death? Possibly.  Is it because I have not really allowed myself to cry in the past 8 weeks and all these tears have to go somewhere? Could be. Maybe it’s because my kid has fucking cancer and there is NOTHING I can do about it, and that’s driving me mad! More than likely.

Today has not been a good day. Tears, tears, tears and more fucking tears. Please do not feel sorry for me!!!!  If anything, tell me to “shut the fuck up!”

I don’t know, maybe it’s because after 8  long weeks, Arielle’s surgery is finally scheduled… for Monday, September 15th, and I’m scared to death. The surgery will take place in Margate, not London.  (Funny, we lived in Margate, Florida until she was like 15)  The London surgeon has no availability next week and it cant wait, so Margate it is.  She will have scans and her hospital pre-op consultation tomorrow and then her consultation with the Oncologist and Surgeon on Friday. I guess surgery will be first thing Monday

I really wish someone would PLEASE wake me up from this horrible nightmare, because I really don’t think I can take much more of this.

…and here come the tears again.

Really Melissa?  Really?

D Day – Part 2 (Good news? Bad news?)

good bad

After waiting and hour and a half, it was finally our turn!  You kind of don’t mind your Oncologist being late when you know he’s giving the people ahead of you the highest level of quality care, compassion and empathy… especially when you know that when it’s your turn, you’ll receive that same!

“Prof” (aka Professor Seckl) is happy to see me there, or so he says… “Nice to see you here Mom… we have the A Team today!”  When Arielle apologies for her “Mom” tagging along to the appointment, he says that if he were a mom, and his daughter was going through this… he’d be there too!  (Score 1 for Mom)

It started out well enough, but then my brain started to struggle to comprehend what I thought I was hearing, because it wasn’t all “rainbows and unicorns,” like it had been during the past several weeks.

This is what I think I heard; the cancer markers are down from 78,000 to 50,000. This is good news, but not great news. The tumor is actually a bigger and is now pressing against the bladder and right kidney. (I’m not a professional “scan reader,” but from where I sat, the fucking thing is “pressing” against EVERYTHING, including her spine!) The cancerous bit of the mass, has reduced in size, but unfortunately not considerably.

“Everyone’s different,” he said. “Not everyone’s body responds the way we expect it to,” he said.  “Chemo does not work the same on everyone.” Well fuck me, this isn’t sounding very good, I’m thinking to myself. Is this the same doctor who was so very OPTIMISTIC and sure of himself, for the past 8 weeks? He goes on to say that the time to get “it” out is sooner, rather than later!  “Really, ya think?” I cant help saying to myself.

He reminds us that the reason the surgery was not performed 8 weeks ago was that the surgeon would most likely have taken “everything” out and the belief was that chemo would reduce the mass enough to allow it (and the bad ovary) to be removed easily (leaving the rest of the reproductive bits intact) was what we all wanted to believe!  This might still happen… but now, we’re not so sure.

He went on to talk about surgery, surgeons, hospitals, timeframes and potential future chemotherapy treatments.  All I heard was Charlie Brown’s teacher.. blah, blah, blah, blah blah. I watched as tears fell down Arielle’s face and she asked,  “Do I get to say that I’d rather live and be cancer free, more than I want to be able to have children?” I thought my heart would break, right there and then.  (You need to know that all she has EVER wanted was to be married and have a shit-load of children. She became a teacher so that she could be home with her kids when school was out!)

I continued to listen, but felt as if I were having an out of body experience… and listening to this conversation, from afar. What I got was there will be more scams and a consultation with Prof and a surgeon this coming Friday and surgery will be scheduled for early next week.

That’s really all we know.

“The rest…”  as they say,  “is in God’s hands.”

D Day (Part 1)

ecision

The train trip from Brighton to London Victoria Station takes about 60 minutes. You then need to make your way through hoards of expressionless faces who are scrambling around like rats, through underground tunnels, to the District Line, West. It’s then only about 30 minutes to the Hammersmith Station and  then a short 10 walk to the hospital. Piece of cake, really.

However,  it was not long ago, that the thought of making that trip on my own would have been unnerving!  It’s true, if your kid is sick or in danger, it gives you “superhuman powers.” Mine is to master the London Underground! (Ok, maybe “master” was a bit of an exaggeration! )

Today is Monday, September 8th and it is Arielle’s last chemo treatment! She has had 3 rounds and 23 individual treatments! And she has been fucking AMAZING.  As her mother, I am of course proud of the way she has handled this, but even just as a person who has watched closely as she’s gone through this, I am in awe  at how brave and fearless she has been.

I write these words as I am on the train headed to London to sit in on Arielle’s appointment with Professor Seckel. I want to hear for myself what the next steps are. I’d be lying if I said I wasn’t nervous, because I just don’t know what to expect. Will there be more chemo? Are we ready for surgery? Is the overall prognosis still the same? Did the 23 chemo treatments have any effect on the cancer? Is it larger? Is it significantly smaller?  I mean HEY, the cancer didn’t respond the way we’ve expected it to from Day 1, so do we now need to change our plans or the overall prognosis? The questions are endless.

I’ll close here…  because, perhaps instead of speculation, it’s just better to come back later and update this entry with the facts.  Stay tuned for Part 2

Guilt; Noun – feeling of having committed wrong or failed in an obligation:

got guilt

The train trip from Dover to Brighton takes about 2 1/2 hours, so there’s a lot of time to just be by yourself, think and be introspective. (Deja vu)

I feel guilty about going back to Brighton a day earlier than planned, but an invitation to the Hat Festival, in Bridport (Dorset) was one I could not refuse.  I need a rest. I need a “Hat Festival,” whatever that is! I need to feel normal and do things that regular people do. It’s been a very long and intense 8 weeks. I have traveled from Brighton to London to Dover to Brighton so many times I’ve lost count and my head is spinning.  I need to exhale, let my hair down (so to speak!)

Brief Interval:  During the writing of this blog entry , I was temporarily distracted by about 70 young Italian students boarding the train, three of which sat with me at my table. I spent 45 minutes trying to converse with these kids (aged 13-16) and their teachers.  They were traveling through the UK, from Venice, Italy. What a riot!  I do not speak Italian very well, and they did not speak English very well, but yet somehow we were able to talk!  We really talked.  After answering a lot of question about who I am, where I’m from and what I do (yes, really hard to explain!!!!)  a cute young boy of 16 asked me if my 31 year old daughter was married!  We all laughed!  Like he was interested…. They got off at Saint Leonard’s Warrior Station (God knows why), but what fun I had.  I was totally lost in the enjoyment of talking with a bunch of kids…  imagine that! 

Ok, so back to my feeling guilty… {It always comes back to guilt doesn’t it?} This weekend we’ll go to Bridport;  a small, beautiful, funky town in Dorset.  Nick has a friend (from when he was like 10 years old! ) named Jon, who is a Veterinarian, and he lives there.

I love going to Dorset. I want to live in Dorset… I love visiting Jon and his dog Chrissy, so why do I feel guilty about going and doing something that I know will be fun and enjoyable? Why do I feel that I’m either supposed to be with Arielle, or be sitting in my Flat waiting to be with Arielle? Why is there guilt about the possibility of my having fun.

Guilt… a very strange concept.

“No one blames her.”

“That never matters,” said Alec. “Not when you blame yourself.”

Cassandra Clare, City of Lost Souls

A deal with God

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The train trip from Brighton to Dover takes about 2 1/2 hours, so there’s a lot of time to just be by yourself, think and be introspective.

I inevitably started thinking about Arielle and the fact that she has cancer and how unfair that is since she is so young and has a whole life of experiences ahead of her.  This led to my thinking about how old I am (I believe the saying is “as old as dirt”) and how much I’ve experienced in my life. This led to my negotiating (making a deal if you will) with God.

Yes, you know what’s coming….  “Let Arielle get through this and be cancer free for another 40-50 years and take me now, instead”

This thought process brought about the most remarkable epiphany; I have had a fucking AMAZING life! No, seriously, I have had the most fantastic, phenomenal life a person could have!  I mean a regular person, not a Paris Hilton kind of person. Here are some of the highlights!

  • I was born in the 1950’s, which means I grew up in the 60’s, which was the totally best time to grow up in, ever!
  • My parents loved each other and worked hard to give their kids the best they could.
  •  Having the absolute greatest older brothers in the universe was like winning the lottery!
  • Growing up on the wrong side of the tracks, helped me to learn quickly about life, people, friendship and diversity.
  • I almost went to Woodstock, but Mom said “No.”
  • When I was 14, a young hippie couple moved in next door. They taught me about acceptance, love,  music, politics, pot and loving myself.
  • I’ve was an anti war activist at a young age. Marched in rallies and burned my bra during the women’s lib movement.
  • My first job was in a radical bookstore and my name is most likely on an FBI list from 1971! (Not because I did anything wrong, but just because I worked there)
  • I’ve been married three times and I’ve been loved by some genuinely extraordinary men, as well as a few SOBs
  • The man I’m married to now has loved me for a really long time!! God only knows why.
  • I’ve experienced natural childbirth… twice!
  • I have two beautiful daughters, who have made me very proud and two grandsons who I adore!
  • I’ve been rich, poor and everything in between.
  • I didn’t die of a drug overdose like some of my best friends did.
  • I’ve been fortunate enough to have traveled to Italy, France, Germany, Switzerland, Spain, the UK and lots of places in the US.
  • I’ve celebrated New Years Eve in Paris and slept in a Bedouin camp, under the stars in a desert in Jordan
  • I have eaten some of the best food ever made and made myself sick drinking too many Martinis!
  • I’ve met some of the nicest, kindest, most loving, caring people on earth, who I am proud to say are friends and some became family.
  • I’ve had to do things nobody should ever have to do, but glad I did because I am a better stronger person because of it.

All in all, it has been one hell of a journey and if it did end right now, if God accepts this deal, I would have absolutely not one single regret! I have lived my life on my terms, learned from my mistakes and most importantly I have loved and I have been loved.

So if by chance I suddenly turn up dead, as in I’m hit by a meteor, slip through the infamous”gap,” or perhaps fall off one if those cliffs Nick is always taking me to… It’s okay. I’m good with it… It’s all part of a deal, that I got the better part of!

You just wait and see…

white ckiffs

After being home just over 48 hours, tomorrow will find me once again on a train (two trains actually), headed for Dover.

Last week in London. This week in Dover. Weekend in Brighton. My life is an overwhelming whirlwind of movement and activity, and I find it difficult to get my bearings.

One day runs into the next and although my surroundings change drastically, nothing else does. Arielle still has cancer. Our lives are still upside down.

I wake up exhausted and walk through the day in a zombie-like state. My feet melt into the hot gummy surface that seems to slow my every movement. My vision is blurred by a haze that never burns off,  …one day just runs into the next.

Tomorrow I’ll open my eyes and search the room for something, anything familiar… because that’s how I’ll know where I am.

The White Cliffs of Dover 

There’ll be bluebirds over
The white cliffs of Dover
Tomorrow
Just you wait and see

There’ll be love and laughter
And peace ever after
Tomorrow
When the world is free

The shepherd will tend his sheep
The valley will bloom again
And Jimmy will go to sleep
In his own little room again

There’ll be bluebirds over
The white cliffs of Dover
Tomorrow
Just you wait and see

Just you wait and see
When the world is free
Just you wait and see
When the world is free

When the world is free
Come on and wait and see
When the world is free
You gotta wait and see

Shut the fuck up!

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To those of you faithful followers still reading my rants on a regular basis, thank you!  You are obviously  made of tough stuff and take responsibility, commitment and friendship very seriously. Good on you!

Frankly, I, myself, am getting a little sick and tired of my rants and my rather unique ability to blither on and on about the same subject, endlessly!

I miss the old me. I miss that woman who could talk to and was interested in a plethora of topics.  The woman who could stand on a “soapbox” and have a good long rant about anything from a disinterested sales clerk (by the way, where has good customer service and basic manners gone?), or world politics (Really Ferguson, really?) to the rights of the dying and yes, why the hell are we here?

I’ve become one dimensional caricature of myself. My repertoire has been reduced to one song… and its not a very catchy one at that!  Cancer, chemo, Arielle and poor, poor pitiful me. Boring!

The problem is I can’t stop!  I have this overwhelming need to purge (via this stupid blog) all the crazy thoughts, feelings, insecurities and fears that I have.  I can only imagine that it’s similar to what a junkie feels when it’s time for that next fix. This overwhelming need to do something that you really don’t want to do, just takes over! You just can’t stop yourself.  And when I don’t get it out, and it builds up and feasters inside, it feels like I’ve like eaten some bad seafood!  Not good. Not good at all.

I, as I’m sure you, look forward to a time when I either am able to write about something else, or I just shut the fuck up!