Waiting for Wellness

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When you’re chronically ill, there’s one thing you seem to have a lot of and that’s time.

For every minute you feel like shit, your mind is somehow tricked into believing that much more time has passed, than has actualy passed.

It’s like there’s “well time” and there’s “sick time.”

The speed, at which the milliseconds in each of these parrelle universes moves, is slower or faster depending on how you’re feeling.

Don’t you think, our “well time” should move more slowly, allowing us more time to enjoy and savour being well?

Whereas our “sick time, a time when we are generally miserable, unproductive and not creative anyway, should move quickly and get the hell out of the way, letting us get on with the business of being well!

This is a huge cosmic “cock up,” as far as I’m concerned, because it’s totally backwards!  I’m just sayin…  somebody messed up!

Lately, I have had a LOT of time to think about time.  This is both a good and bad thing.

I am acutely unwell at the moment, with no real end in sight.  So, on the one hand time is moving unusually slowly for me.

My daily routine is exactly the same as it was the day before, with little to no variance; so each day is just me, reliving my own personal “Groundhog Day,” day after day, after day.

Getting up at 4:30-5:00 AM each day, doesn’t help with this whole “time stands still” phenomenon; an 18-19 hour day is tough enough when things are going good… but when you’re unwell, flaked out on mega doses of steroids and staring at the walls, they’re unbearable!

Time.    Stands.    Still.

However, on the other hand (and there’s always another hand, isn’t there?) from a “Big Picture” perspective, where the hell is the time going?

How is it almost February 2018?  Is my new Grandson really almost a year old?  How is it possible my brother died 10 months ago?  Was the “wedding of the century” really 5 months ago?  Did I miss Christmas?

Do you see what I mean?  

The days and hours seem to crawl by, but yet the years and months just speed past!

I am told, I’m in my “Golden Years” (Golden my ass!) Truth is, I don’t have a lot of time left!  If you think about it, I am much closer to my death, than I am to any other expected “life event” that’s left on my list!

There’s not a lot of time to waste!!!! 😵

So really, sitting around here, feeling like crap, staring at the walls is not a good use of my very limited time…  but do I really have a choice?

I think not.

I’m sure the Universe is trying to teach me an important lesson. Something very profound and apropos, about slowing down, or letting go; maybe a lesson about my need to believe I have some semblance of control over things.

Okay, I get it.

I’m open.

I’m ready to learn the lesson and move on,

Can you will the Universe to release its hold on you and allow you to move to the next level?

I can but try… in the meantime, I will try to be content to sit quietly and wait on wellness.

 

 

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The Ultimate Betrayal

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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

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

 

If it wasn’t for bad luck…

luck

I believe the lyrics are, ” If it wasn’t for bad luck, I wouldn’t have no luck at all.”

Not an entirely true statement, but humour me; it’s 4:14 in the morning, I’m wide awake and I’m feeling rather dramatic and a bit forlorn.

I won’t readily admit that I’m taking my newly confirmed diagnosis badly, but let’s just say you might feel more comfortable in the company of a peckish Jeffrey Dahmer.  {Look him up young ones!} 

Last night’s appointment with the specialist, Rheumatologist was a blessing and a curse.

On one hand, it was enlightening to learn that there is consensus;  four, different healthcare professionals concur, that I do have both Polymyalgia Rheumatica (PMR) and Giant Cell Arteritis (GCA).  

However, on the other hand, there was a part of me that really believed this was all a ruse, and I’d once again hear those words, “Oh, it’s just a virus.  If it’s not gone in 10 days…” 

These two “linked,” auto-immune, inflammatory conditions affect different parts of the body, but are frequently discussed together because PMR occurs in about 50 percent of people with GCA; and GCA occurs in approximately 10 to 15 percent of people with PMR.

Did I just hit a perfecta?  Well, the  odds were 50/50, so I guess it’s not that remarkable! 

Where PMR is an inflammatory, rheumatic condition characterised by severe aching and morning stiffness in the shoulders, hip girdle, and neck; GCA is characterised as a vasculitis of  large and medium-sized vessels and can involve the aorta and blah, blah, blah… I’m bored already.

Honestly…  I do not think I have time for this in my life!  “Is there someone I can discuss this  with?  A manager? Someone?  Anyone? “

There is a certain amount of vindication (quite a bit actually, now that I think of it!) soaring through my inflamed arteries at the moment!

Which feels rather… satisfying.

Over the past couple of years there have been more and more trips to the GP with complaints of various aches and pains.

I can hear me saying, “Look I know I’m in my EARLY 60’s, but this just doesn’t seem normal!”  He’d just give me that sweet, condescending smile; while telepathically patting me on the knee in the most annoying and patronising manner EVER.  

Ahhhh, but looky here, Dr Superior! 

There was something going on!  My inability to walk without pain in my hips, my need to develop the rather clever technique of turning my whole body around, to see over my shoulder, the utter exhaustion for no reason, and those horrible shooting pains down my legs when I was sitting on the couch resting, were NOT normal signs of OLD AGE!

It was f**king Poly-what-ever-you-call-it!

“I told you so.”           

Well, that felt good, but I have to admit much shorter lived than I would have liked…  : (

I really hate to be Polly Anna Pity here, but it’s seriously disheartening to think that a mere 30 days ago, I left the confines of our trendy, Brighton flat, and went off to work;  in less than 10 hours later, I returned home, a woman forever transformed.

I am not sure what this transformation will bring, but I will get to the point where I embrace it and accept it with open arms…  just let me bitch a little bit more.

I’ll come around, just give me some time.

 

What the f**k is “GCA?”

I always had visions of myself as a timeless, ageless woman, who would grow old effortlessly and gracefully.  You know the type; the woman who glides into old age with neither a care nor a worry.

I envisioned my older, confident self as fairly attractive, healthy, and on the enlightened side; a more mature version of my younger, “truer” self.

Almost unnoticeable to the outside world, I would move smoothly through the decades, seemingly untouched by the ravages of time… and then, I’d die.

Easy peasy. No muss, no fuss. Gone. Done. Over.

That was the plan.

I never considered or even begun to prepare for a long and/or arduous ageing process. And for some reason the thought of dealing with any type of debilitating illness was, well… quite frankly, inconceivable! 

Ahhh, but the gods, they do love to interrupt our silly, fanciful, mortal “plans” don’t they?  With a nod of the head, or blink of an eye, our cleverly, crafted schemes are so very easily thwarted.

In the last month, I have seen my perfect “vision” of growing old gracefully (and healthy)  crushed like a tiny, insignificant, bug!  I think I may have actually heard the unnerving “splat,” as the maceration took place!

In an instant the visions of me, as a “goddesslike” creature, slipping away gracefully into the gentle arms of old age and eventually death, were exterminated.

Instead, it appears that I may very well be, perilously, skidding (head first) into that noxious mixture of fire and brimstone, that so many people find “is” their experience of old age and poor health.

Seriously, “WHAT THE F**K?”  …does nobody have any respect for a finely tuned, well thought out plan?

Monday, November 13th started out like any other day… I worked a 7:00 to  3:00 shift (on the Bristol Ward) at the Royal Sussex County Hospital. It was busy and somewhat stressful, but really just a normal day.

I realised, as I took my seat on the bus, that I had a raging headache.

“Hmmm? stress,” I thought.

As the Number 7 bus plugged along Western Road, I became more and more aware of this excruciating pain in my head and an overwhelming feeling of exhaustion.

No matter, the day was done, I was on my way home and relief was in sight… or so I thought.

No sooner had I arrived home, I hit the couch and passed out.  I awoke, about and hour and a half later; in a dark, quiet room, disoriented and still in pain.

I will spare you the boring, twisted details of the events that followed, because really it was just more of the same  (wake up, headache, lay down, fall asleep, wake up, headache, lay down, fall asleep, repeat), but just to be clear, the exhaustion and excruciating daily headaches have now returned each day for exactly 29 days!

There have been 4 trips to the GP;  who has sent me, not once, but twice to A&E, where I sat for more than a total of 15 hours. The first time I was told it was a migraine and given Paracetamol.  The second time, a week later, they took a bit more interest!

The exact diagnoses is still not 100% definitive, but “they”  (the powers that be) are leaning towards a diagnoses of something called Giant Cell Artiritis. (Not to be confused with arthritis, which is a disorder that affects joints.)  

“What the hell is GCA,” I hear you say?

My thoughts exactly.

Giant cell arteritis is defined as an auto-immune condition in which medium and large arteries, usually in the head and neck, become inflamed. (Remember when “inflammation” became a thing?)  It’s sometimes called “temporal arteritis,”  because the arteries around the temples are usually affected, creating the feeling that someone’s put your “head in a vice grip.”

{Ohhhh, what was that?   Oh, just my dreams of growing old gracefully, flying out the freakin window!}

Basically, inflammation of these blood vessels causes the main symptom, headache.  Swelling also causes narrowing of the blood vessels, which, in turn, results in diminished blood flow into the brain, eyes, ears, etc.  Sounds good so far! Count me in!

The ONLY treatment seems to be long term, “high dose” steroids; and unfortunately, if you decide not to treat, you risk almost certain blindness and a possible stroke.

Sooooo, not a lot of choices really.

This disease is not curable, but is treatable; it usually lasts between 2-5 years and the steroids are administered throughout; although they continually try to taper you down, to lower and lower dosages, until you’re eventually off.  That’s the goal anyway.

Do you know anything about steroids?  Not the kind the body builders use to get  pumped and buff,  but the legal and more common, corticosteroids?   I didn’t either, so let’s take a look at some of the more common side effects, shall we….

What was that about growing old gracefully, you ask?  Ahhhh, yes, “gliding into old age with neither a care nor a worry.”

It would seem, that is not going to be my path.

I have been on 60 mg of Prednisolone a day, for 9 days.  No bearded lady gig offers yet!

The headache has (for the most part) subsided).  The exhaustion and lethargy have not.  I am able to do a few chores around the house, take a shower, eat lunch and that’s pretty much me for the day.

The couch and I seem to have melded together in an indistinguishable mass of purple leather, arms, legs, pillows and blankets.

I will see a Rheumatologist (“Oh my God do I actually have a Rheumatologist now?”) on Tuesday and hopefully she will help me piece together the shards of shit that life seems to be hurling at me.

Sooo, I  shall leave you here, hanging on the edge of your seat…  or, more probably, “NOT.”   Perhaps you too are as bored and disinterested in all of this as I am.

For now… you need to know one thing.  Please know that if I have not returned a phone call, a Facebook Message, or an email;  if I’ve cancelled a planned dinner, lunch or coffee date…  if I have been rude or dismissive of you in any way… please know that it’s not you, it’s me.  I’m not purposely trying to be an jerk,  it’s just that there are circumstances far beyond my control and I must devote all my time and attention ME. 

Watch this space.

 

#METOO

All this “Harvey Weinstein” chatter has me thinking back to when I was a young, naive and in many ways, stupid young girl. It has me thinking about things that happened to me (or as I once believed “because” of me) that I hadn’t thought about in many, many years.

Am I just now realising that I too had disgusting and deviant encounters with men (who would now be known as sexual predators) or am I perhaps just finally admitting to myself that these scenes actually happened in real life and it wasn’t just my mind playing tricks on me?

As a young girl, I never felt pretty or attractive.  By the time I was about 13-14, I was 5 foot 10 and 1/2 inches tall. I towered over all the girls, most of the boys and even some of the teachers. I was unusually tall, big boned, awkward and a bit of a tomboy.    

As pretty, petite, blond girls like Judy Williams were receiving handfuls of anonymous Valentine Cards from boys, declaring their undying love… I was climbing trees and playing “hide and go seek” with the boys who like me, had yet to come into their own.

When I entered high school, I realised I did not fit into any of the standard cliques. I wasn’t particularly smart or athletic. I couldn’t play a musical instrument; I wasn’t artistic, pretty or popular. So I did the only thing I could do to survive; I turned on, tuned in and dropped out. Thanks to Mr Timothy Leary and others like him, I realised fitting in wasn’t all it was cracked up to be.  There was another path.

At 14, I was socially aware, politically minded, had advanced musical tastes and was drawn to older people. And they too, at least some of them, were drawn to me.

Mr Dickhead (not his real name) was my high school, freshman year, English teacher.  He lived only a few blocks away from where we lived and he volunteered at the neighbourhood “after school” club, that some of us hung out at. He was in his mid-twenties, handsome, very cool and he talked to me like I was someone with something interesting to say. We talked about books, music, world events; as I remember it, we talked about everything. I did not think it odd at all, when he asked me over to his apartment to listen to some new music he thought I might like.

Although I may have been “mature for my age,” in matters of politics, music and world events… in matters of the heart (or in this case matters of the body) I didn’t have a clue!

He offered me a beer, like it was the most normal thing in the world, and of course I took it. We sat on the couch listening to music and talking…  We were having this very long, in-depth, discussion about the state of the world, life or the universe…  when he all of a sudden leaned across and kissed me; on the mouth! I was shocked, I froze. (Sitting here today, writing this, I’m embarrassed to say that I was probably more shocked that he apparently found me attractive, than I was by the fact that he, my 25-year-old, English teacher, was hitting me!)  To this day, I don’t know why I didn’t get up and run out of there screaming, but I didn’t… without going into the grisly details, I managed to leave there with everything intact, but was shaken to the core and I was never quite the same after that encounter.

Needless to say, I had to find someplace else to go after school, so I volunteered at a local, left-wing bookshop…  as you do!

I worked for free, behind the counter or stocking shelves.  The people who came into the shop were mostly college kids, from Clarke University.

The owner was perhaps in his late thirties, maybe early forties.  He had long salt and pepper grey hair and a matching beard. His family name was prominent in the city and he was the family’s Black Sheep, who organised anti Vietnam War marches, started a free breakfast program for children of low-income families, and allowed the local chapter of the Black Panthers to hold meetings at the bookstore, some of which I happily attended. He hosted Q&A evenings with new authors, poets, musicians and revolutionaries.  He was always being written up in the local newspaper as either a saint or a radical. He was divorced, a bit unkept and more than a little paranoid; but I believed he was worldly, intelligent, socially enlightened, unfairly persecuted for his beliefs and (with my help) he was going to save the world!

When he asked me to help him unpack boxes of new stock, in the cellar, I didn’t think twice… (Yes, yes I know there’s a pattern here; it appears I was the stupidest and most naive 14-year-old girl ever!  “Fool me once,” I hear you saying!)

Anyway, we were happily unpacking boxes of new books, when he sat down on a mattress, that was on the floor. (No, I did not question why there was a mattress on the floor in the cellar of a bookstore… I was a “hippie” in training and it was 1968 for fuck sake!)  He was visibly upset and distressed…  After several minutes of talking, he confided in me that the local authorities had apparently made the FBI aware of his political shenanigans, and it was just a matter of time before he would be arrested or “worse.” 

I remember feeling so bad for him and wanting to comfort him…  I started to tell him what an amazing man he was;  how he fed the poor, openly opposed a senseless war, did all he could to raise the consciousness and awareness of young, silly children like me…  At that exact moment, he looked me in the eyes and pushed me down onto the mattress! He laid across me, pinning me down and started kissing me… open mouth and hard!  WTF?  My brain was spinning and remember I became very scared, very quickly.

He was one of my hero’s. He was a civic leader. He was a well-known member of our city and an enlightened “revolutionary.”  He knew ABBIE fucking HOFFMAN, for Christ’s sake!

Thank God, the whole ordeal ended before it got totally out of control and I once again left a “bad scene,” intact and unharmed. I learned that day that guys, apparently didn’t actually need to “do the deed,” they needed only a subject (willing or unwilling) a bit of friction and a good imagination!  It turns my stomach thinking about it now…  and it’s 45+ years ago.

Yes, there were others.

It seems they were always lurking around the corner; disguised as something they were not, but as crept out of their holes and approached, I was becoming more ready for them.  I was becoming older, wiser and much less naive.

The older women I was meeting introduced me to the Woman’s Liberation Movement, and it taught me a lot! I learned, most importantly, that it was MY BODY, MY DECISION.  I became much more confident in myself and my sexuality. I wasn’t so taken back and shocked by the attempts made by the cool, suave English Teacher types or by the older (supposedly more mature, responsible) men I encountered when I started working.

I was no longer caught off guard;  I said who,  I said when and I said where.

None of these men had control over my career or were in positions of such power that they could have destroyed my future or negatively impact my livelihood; but they did “push” themselves on me. They did take advantage of me. They did use their age, position and authority to intimidate and confuse me.

These men, and the others not specifically mentioned here, are the ones who make it so very necessary for me to stand up, and with millions of other women, publicly say…       “Me Too.”  

#dontharshmymellow

WOW!

People who are grieving can be real downers, huh?

Hey, I’m only saying it, because it’s true!

We suck.

Well, okay…  maybe not everyone who is grieving sucks, but I certainly do!

I didn’t know it was possible to harsh your own mellow…  but apparently it is!  Even I don’t like being with me!

Living with grief is like opening your eyes every morning and finding yourself in the House of Mirrors; you logically know there must be a way out, but no matter which way you turn, you walk into a wall or a mirror ago of yourself!!  You stumble around, having no idea how to get out, but you have no choice but to keep trying.  You start to believe staying in the nightmare isn’t an option and you feel you must find a way out before you throw up or die!

You never know what the new day’s going to bring.  I often wonder,  “Will today be the day  I bitch out the fishmonger for not having any fresh salmon; or break into tears when I see that drunk guy stumbling down the high street; maybe today’s the day I finally just punch that guy in the face, because he refuses to look up from his stupid iPhone and he crashes right into me!”  You just never know.

I feel like a walking time bomb…  a cornucopia of mixed and conflicting emotions; ready to explode onto the unsuspecting world at any moment.

I think perhaps Facebook rights should be temporarily suspended from grieving people.

Okay… I think Facebook rights should be suspended from me!

My posts rage from incomprehensible dribble to lethally depressive “one liners ,” that make you think Leonard Cohen’s version of “Hallelujah” is actually pretty upbeat!

I vacillate from being 100% apathetic and indifferent about EVERYTHING, to vehemently debating things with everybody and anybody;  important things like the need for the toilet roll to ALWAYS be dispensed OVER the roller and NEVER under!

I’m up.

I’m down.

I’m sad.

I’m manic.

I’m the direct opposite to whatever I believed myself to be, just a minute ago.

It’s bizarre because I don’t even consciously think about Tommy anymore… I’ve pushed him under and covered him with shrouds of anger and resentment.  I’ve buried him with Charlie, Mom, Dad and all the others who so carelessly let their lives end… leaving me here alone.

I know, I know, my feelings are juvenile and trite… but nevertheless they are unfortunately undeniable.

They tell you there are seven stages of GRIEF…

  • SHOCK & DENIAL
  • PAIN & GUILT
  • ANGER & BARGAINING
  • DEPRESSION, REFLECTION, LONELINESS
  • THE UPWARD TURN
  • RECONSTRUCTION & WORKING THROUGH
  • ACCEPTANCE & HOPE

What they don’t tell you is that you will feel ALL of them, a hundred times a day, in no particular order!

And in those fleeting moments, when you think you’ve finally got it figured out… you walk straight into that mirror image of yourself… BAM!  And as you shake it off,  and take a step back, you see that she’s…  she’s laughing at you!  That is particularly odd because you can feel the hot tears of pain and loneliness  streaming down your face.  Hmmm?

Got grief?

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Written on May 3rd… never posted.

 

 

 

2 Months, 21 Days, 10 Hours, 46 Minutes…

hospital roomIn some ways, it feels like a lifetime ago.

Like a distant memory or a dream… sometimes, I’m not really sure it actually happened?

We had been in that hospital room for 8 nights and 9 days and after awhile it began to feel like we’d never leave; maybe we’d just exist there forever.

It’s funny how your mind plays tricks on you; even though you absolutely, positively “know” death is coming… you begin to believe that this is just how it is now and how it will always be.

Your mind normalises this “waiting for death” routine and you begin to subconsciously convince yourself that “it’s” not really ever going to happen.  On some level you begin to believe that you’ll both just be suspended here in this place, in this state, forever.  Him in an infinite state of dying and you in an equally infinite state of watching and waiting.

However…  eventually it does happen.

It always happens.

In Tommy’s case, he waited until I was involved in a conversation with the Health Care Assistant and not paying full attention.

It was a Saturday.  I had arrived at about 8:30 am.  He was sleeping soundly.  I imagine the Morphine drip had a lot to do with what appeared to be a natural, peaceful, dreamlike slumber.

I said “Hello,” to the HCA and proceeded to get myself situated.

I positioned my chair as close to the side of his bed as I possibly could. With my Dunkin Donuts coffee in hand, I leaned over, kissed his head and whispered “Good Morning.”  (I pretended he responded “Hey Sweetheart!” as he would have normally.)  I sat in the chair and placed my right hand on his back.

I looked around this drab room, that had become our home and sipped on the coffee…  my thoughts drifting.

This wasn’t new.  I had been here before.  No, literally… I had been “here” before.  In this hospital; on this floor in an exact room, just a few doors down.

I fact, I had been here TWICE before!

This is where my Mom died.

After being with her 24/7 for several days, she choose to die alone, after I had gone home to shower and change.

This is where my brother Charlie died.

I had spent 5 long days with him; and after opening his eyes wide and trying to say something that I just could not understand, he died… with me leaning over him, gently stroking his hair. .

And now here we were again.

I watched, as my hand moved up and down, up and down… very slowly with each breath he took.  I remember his skin was an odd shade of grey/yellow and his breathing was shallow, but rhythmic.

I don’t know what made me start a conversation with the HCA who had been assigned to sit with him that day.  I’m not awkward with long silences… especially in this situation.

Her shift had just started… and she too had a Dunkin Donuts coffee.  We started with  pleasantries; “What’s your name?” “Yes, I’m Tommy’s sister.” “I live in England.” “Yes, I do  love it there.”

And that’s about as much as I remember.

I don’t recall her name or what she looked like. I can’t remember if we talked for 5 minutes or 25 minutes. I don’t even know what we “talked” about.

I just remember in the midst of it all, a tiny voice in my head whispering… Something’s not right. Something’s changed. Something’s wrong.

I stopped talking, in mid sentence and looked down at my hand.  It took me a moment, but it finally registered… my hand was no longer moving up and down.

Tommy’s back and my hand were unbearably still.

Somewhat in shock, I looked at the HCA and asked her if she could please “check” Tommy.

She jumped up, came to his bed and felt for a pulse on the side of his neck… After what seemed like ages, she looked at me with tears in her eyes and said, “I’m so sorry, let me go get the nurse.”

I remember sitting there next to him (my hand still on his back) thinking, “Wow… Brother… that was easy, huh?”

He had slipped away, effortlessly, while I was busy chatting.

Much of what happened after that is a blur.

The nurse came in, listened for a heartbeat, felt the side of his neck and then looked at me with this genuine look of sympathy and compassion and asked if I was alright.

Did I need anything?  Did I want some time to be with him alone?  Was there someone they could call for me?

An hour or so later, the doctor came in; he examined Tommy and made the official pronouncement.

I remember the HCA being a bit distraught and apologising that she had distracted me, and taken my attentions away from my brother…  I smiled at her (actually wanting to give her a hug) and saying, “No, no… please don’t apologise.  That was Tommy… that was my brother… he went exactly the way he wanted to go!”

I’m sure he waited until I was there… but decided to slip away in the few minutes when I wasn’t fully engaged.  He hated being the centre of attention.

I helped prepare his body.

I washed his face… wet and combed his hair back… cleaned his arms and hands with warm soapy water.

He looked like he was finally at rest; peaceful.

I watched as they gently bound his hands and feet and wrapped him in clean, cool white sheets.

They asked if there was anything else I wanted or needed before they covered his face and placed him in the white, plastic body bag…  “Yes, there is one more thing,” I responded.

I put on some fresh, red lipstick… walked over to him and kissed him firmly on the forehead.

“Please don’t take that off,” I asked.

That was 2 months, 21 days, 10 hours and 46 minutes ago…

I still miss him terribly.

 

 

 

 

 

 

 

 

 

 

 

 

Me, Myself and I

I

It’s a peculiar feeling knowing that you’re the only person in the whole wide world who can validate, or quash every childhood memory that you have.

Think about that for a moment… from now, until end of my life, the way I remember a birthday, a holiday, a discussion or any one of a trillion moments in time... automatically, without question, becomes reality.

Not just my reality… but REALITY.

There’s no one left on this earth to correct me.  No one to tell me, “it didn’t happen like that.”  Nobody to provide an “alternative fact.”  Nobody to keep me honest.

The way I remember a particular event, i.e. who was there, what was said, how a  situation unfolded… must now be considered, by everyone, to be the unequivocal TRUTH.  

That thought is both empowering and debilitating.

It is now my recollection, of everything that happened within my nuclear family, that will forever be accepted as an indisputable fact. 

But wait,  

…if that’s correct, then that means that I (and I alone) am now responsible for accurately recalling and conveying every important (and unimportant) conversation that ever took place; along with every scene that has ever been played out, within my family structure!

No, no, no.   Wait a minute!

How did I get left in charge of this sacred trust?

How did I become “Keeper of the Fucking Memories?”  … left in charge of archchving an entire family’s history!

No seriously… how can there NOBODY left on this entire fucking planet who can corroborate (or contradict) my early childhood and teenage memories?

That’s just insane!

I’m the baby of the family!  I’m the one who gets “let off the hook.”  I’m the one who  concedes.  I’m the one who cries, “UNCLE.”  I’m the one who doesn’t pay attention, because someone else always will, I’m the one who has always had a “grown up” looking out for her.

I should not be allowed to have this great a responsibility… ask my brothers, they’ll tell you…  

Oh… right.

You can’t ask them… They’re not here…

There is nobody to ask.  Nobody to defer to.  Nobody remembering the past with me or telling me what actually did or did not really happen…

There’s no one to ask,  “Hey, remember when….?”

There’s no one who can remember what it was like to sitting by Mom’s hospital bed, for hours and hours, those last several weeks.

There’s nobody who remembers all of those magical Christmas morning’s or the Thanksgiving days that were filled fabulous food and good old fashion football!

There’s nobody left for me to walk down Memory Lane with.

I’m alone with the haunting memories of emptying out our childhood home after Dad died, having to tell Mom’s oncologist, “No… no more surgeries,” siting with Charlie as he took his last breath.

It’s just me.  Me left with nothing…  nothing but memories.

But if it’s only me with a lifetime of detailed, intricate, colourful memories swimming around in my head and there’s nobody left to remember them, dispute them or  substantiate them… I have to wonder, did they really happen?

I guess only I know for sure.

Just me, myself and I.

 

Thomas N. Grassel Jr.

 

 

 

 

My brother Tommy died today.

I’d like to be able to tell you that he died peacefully, in his sleep, surrounded by friends and family… but that was not the case.

He died, pretty much the way he lived most of his life;  angry, frustrated and fighting his many demons.  Even once he began his end of life journey they would not leave his side.  Considering themselves his friends, they’ve  hung on till the very end.  This, along with the fact he was so sick, made his final journey, a long and arduous one.

It should be said that although my brother’s “body” stopped functioning today, he actually died some 50 years ago, and I have been mourning that loss ever since.

You see, my brother Tommy, the brother I had known and loved for the first 13 years of my life, died in Vietnam sometime between the fall of 1967 and the 4th of July, 1968.

Although the United States Army was kind enough to return his somewhat broken body, and what was left of his mind… the better part of him (the part many of his friends and acquaintances never got the chance to see) was left behind; a million miles away from here, forever entombed in the murky waters of a hillside rice paddy.

Like so many of his comrades in arms, he was not prepared for what he experienced in Vietnam.  And although he did only what he was trained and ordered to do, I don’t believe that my naive, 18 year old brother ever reconciled with what he witnessed and he certainly never forgave himself for any transgressions that he may have committed.

These were his demons.

Torn, between being proud to be a Sergeant First Class in the US Army’s 101st Airborne Division (aka The Screaming Eagles) and being (at his core) a pacifist, he constantly struggled with grasping a genuine understanding of who he “truly” was and what he believed in.

If you knew my brother at all, you probably had a love/hate relationship with him. Generally he was a nice, polite, funny, generous, outgoing guy who could (when he wanted to) be quite charming… but he also had a dark side.  He could become angry,  hurtful, verbally abusiveand quite difficult to deal with, at the drop of a hat.

He didn’t mean to be any of those things and he always regretted it.  It was just that the demons sometimes possessed him and devoured his sense of right and wrong.

As I said, if you knew him at all, at some point during your relationship/friendship you would have had a legitimate reason to call him an “asshole.”  If you didn’t, then you didn’t know him as well as you think you did.

Regardless of all his many shortcomings and imperfections… he was my big brother.  He was a good man.  He was an honest man and he always loved and protected me, his baby sister.  And I, with every fibre of my being, loved him right back.

His passing leaves yet another hole in my already battered heart.  After so many losses,  I now imagine my heart has taken on the texture of a sea sponge…  rough and pourus, softened only by absorbing tears, which won’t stop.

My brother is finally at rest.  He is finally free from the demons that have plagued and tourtured him for so many years.

In the last few hours of his life, I believe I witnessed a softening in his face… his usually furrowed brow was relaxed and smooth.  I choose now to believe he took advice I gave him earlier in the day… I believe he began the process of self forgiveness and acceptance and he came to understand that he, just like the rest of us are flawed and nothing short of human.

Hmmm?  Come to think of it, he did die peacefully with friends and family by his side… he had me, his only family and his best friend.

I love you Tommy.

Your baby sister, Lissa

xxx