About Me

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I'm a mom, a wife, a best friend. Sick with CFIDS/ME/CFS and Fibromyalgia since 1975 as a result of a nasty flu while still in grad school, it wasn't until the late '80's that I received a diagnosis. Until that flu I'd never really been ill before. With each year I get progressively worse and add to the bucket load of symptoms I'm living with. I've been blessed with an incredible family and best friend who've stayed with me through my struggles as we continue to find a way out of this monstrous illness and its complications. We've tried seemingly every approach to find my way back to health. Often I think our best weapon in this undesirable and unasked-for adventure has been laughter.

Tuesday, August 14, 2012

Roads Traveled and Not Traveled

Little Irene really ticked off about the big fuss made for kindergarten graduation when there was still so much more work to get done before getting to the PhD studies.

Last night, as hubby (and I?) watched the summer season's first episode of "Grimm," my mind started wandering.  I couldn't help thinking about how much my world has differed from the time I started thinking about what I wanted to do in life vs. how my life has actually turned out.  It's definitely been a mixed bag, as I think it is for everyone. I truly believe no one comes out of this life unscathed (perhaps the only thing I took away with me from my class on Emerson) - it just depends on how much "scathing" we happen to experience.

I well remember that as a four-year old, I wanted two things.  I knew beyond a shadow of a doubt that I would go to college one day - and proceeded to inform my high school next-door neighbor of my intentions.  She had a good laugh and from that laughter she practically rolled down the hill we lived on.  

But I was also aware that our family was pretty hard off financially  - both of my parents arrived in the States a few years after WW ll ended - and consequently my other "goal" was more of a dream than a firm "this IS going to happen."

I always dreamed of traveling and I do think that's one reason I became such a bookworm so early on.  The armchair traveler: the easiest and least expensive way of exploring the world.  And I think I did inherit some sort of a "travel gene."  Our family did a lot of traveling along the eastern part of the States, but the immigrant's way. Rarely did anyone stay at a motel.  You had immigrant friends in Cleveland, so you explored everything between NY and Ohio.  You had friends in Florida?  Ditto!  

But I had bigger dreams and higher aspiration than to "see the USA in a Chevrolet" as an old commercial beseeched us.  The only problem?  I didn't know how we'd pay for college, much less travel?  (What four-year old thinks this way???)   

Back in the day, as they say, you needed money to travel The World, LOTS of it - or you could become an airline stewardess, a very glamorous job when air travel was so exclusive.  The problem with being a stewardess, however, was that in the days of what would now break a bucket load of laws, there were incredible restrictions to being a stewardess - and I never thought I could achieve them.  Among many other requirements, the stewardess was beautiful, her figure was to die for, she had "class" galore and needed at least a second language.  I felt I had only one thing going for me, the second language bit, and after my Villa Maria Catholic boarding school I just might have been able to figure out the "class" thing - "might" being the operative word - but the rest...?

Thankfully, the world started changing - as things do - and I changed too - as one does.  Flying started to become an "affordable luxury" and as our family assimilated into the great American middle class, travel around the world also became a not-so-impossible dream.  And one fine day I met hubby, a person who rarely, if ever, met a challenge he didn't love, who'd already spent a summer backpacking his way across Europe, often sleeping in parks when he couldn't afford a youth hostel.  My biggest travel dream came true when we flew to London for our honeymoon.  

Since then, I've been more than fortunate: I've traveled aboard to more places than I could have ever imagined - WAY more than I could have imagined.  Anyone who's read much of this blog knows I was in Kuala Lumpur, Malaysia just last month, despite this DD.  

I'll let you in on a secret.  Until two years ago, I'd never even HEARD of Kuala Lumpur and had no idea that Malaysia was even a country, much less knew WHERE it was.  (Shame on me: one of my favorite novels of all time is Nevil Shute's A Town Like Alice, which started its story in what was then known as "Malaya.")  And I wasn't alone.  Every single person I spoke to - after my son started to try to figure out a way to go there to study - would ask me, "where is THAT?"  When we were at the "major medical center," which was VERY international, I never once came across anyone who knew where KL was.  The only person I spoke to who knew?  My cousin in Russia when we spoke on Skype!

There's a saying which has become a cliché: be careful what you wish for.

And there's the rub.  I never specified, growing up, that I needed my health too.  Health?  That was a given.  We may have been poor, but everyone I knew had their health - in spades!  I always thought the expression, "if you have your health you have everything" was a saying that the rich made up to make us poor people feel better about our lot in life.  (Skeptical little creature, wasn't I?)

And so, with each overseas trip we ever took, I never even realized at the time that it was harder to get myself together to go on that dreamed-of destination that I'd read about in books.  And with each trip, it became more difficult to  actually DO things once I got to my destination.  I really slowed hubby down, but he just assumed all women were slower than men.  (Hubby must be forgiven: it WAS the '70's and a very different world gender-wise.) When I arrived home, each trip forced a longer recovery time on me, though we were very good at coming up with excuses as to why each was harder.

Not once did hubby suspect that anything was amiss.  I looked healthy.  I was active and went to a gym every other day at a time that no one really went to gyms.  We were in NYC, so this was a new trend, especially the yoga classes.  (I told you the world has changed but you doubted me!  Admit it! ;)) 

I well remember barely making it home, just a few short blocks, but having to sit down somewhere at least twice on each block, sweating, panting, unable to catch my breath, desperately trying not to pass out.  Yet we saw this as normal, thinking that I was simply "adjusting" to the whole "exercise" movement (four years of adjustment?). We conveniently overlooked or forgot that I walked miles each day in college and was never out of breath, running across our infamous university drill field numerous times a day - or the thirteen years of summer camps in very primitive conditions and much physical activity, with me always the best runner and swimmer in my age group.

We conveniently forgot or didn't understand that the flu that initiated this illness of mine started a series of events that looking back on were ever so obvious that something was amiss - like ending up in the hospital.  Just weeks before I met hubby, just a few months after "that flu," I was hospitalized for colitis.  We blamed all the antibiotics I'd been on because of all the secondary infections I kept adding on to that initial flu as it grew more complicated every day and as I passed out every day from that "ground zero" illness, thinking, "mind over matter" and "no pain, no gain."

Over the years I had incredible (to me) opportunities to travel.  At first, each trip was something we saved up years in order to do.  Eventually, we became more financially secure (thanks to REAL jobs) and after about 15 years into my CFIDS/ME/fibromyalgia, insomnia, each trip eventually reached the point where it was not frivolously taken.  We were finally noticing a pattern.  We also finally had a diagnosis, though we had no idea what to do with it: no one really did.  

But if nothing else, I've always been stubborn and always hard on myself.  Sick?  Yes...but nah, not REALLY!  So in the '90's, visiting most of Europe or the two trips to Russia and the Ukraine once the Soviet Union fell apart, or taking my three trips to Australia, there were family reasons for me to go.....the list is long.  But each trip cost me, and the price for my last trip to Oz was two years in bed. 

So, here I am, 38 years later.  And I still cannot accept that I'm ill.  

Perhaps if this wasn't such an invisible illness, I'd have an easier time accepting it.  Perhaps if I'd known from the first days that I was sick and not lazy, I'd have been able to adjust.  Perhaps if I'd known that having three 10-lb. babies in three years was a bit over the top, and had taken it a bit slower, I'd have been spared the degree to which I'm so sick now.  Perhaps if we'd known what we were dealing with early on, I could have spared not just myself, but my family, too, a lot of grief, a huge understatement.

In the end, I have to wonder, did I achieve what that four-year old was determined to do and had the chutzpah to dream of?  Yes, I did get my university degrees, though not the PhD I so badly wanted.  And I've traveled more than I could have dreamt of, even further than Dorothy did to HER Oz.

And I ended up with a life I never dared dream: a husband who loves me and whom I've loved since the first moment I laid eyes on him (yeah, yeah, corny), a best friend of 42 years who is so wonderful that I feel badly that everyone in the world doesn't have this fantastic a best friend in their lives, and the biggest treasure of all, my three beautiful, kind and giving children who, despite putting much grey in my hair, have made my life rich beyond any measure.  (As she madly knocks on wood and does the Russian "tphoo! tphoo! tphoo!")

The only thing I would have changed?  Perhaps I should have added the "good health" clause.  

But to put a positive and yet very realistic spin on it all, I have to wonder what incredible things may not have occurred had I remembered that clause.  And that's my other pastime when things get especially bad.  I really, really have to work on seeing that things are what they are, the past can't be changed.  

Consequently, to stay relatively sane, I start to look at all the little roads that may have not been traveled had I stayed healthy.   And as we all know, the road not traveled, the harder road, is really the one that makes our lives richer.  Harder, yes, but hopefully, much more rewarding in the end.  Or so I sincerely hope!

What do you think?   Given a chance to change the course of your life, knowing what you know now, would you have gone along the road you were fated to go?   In Frost's poem "The Road Not Taken" and in the M. Scott Peck's famous book, The Road Less Traveled, we are given choices, whereas in real life, we with CFIDS/ME/CFS, fibromyalgia and the plethora of complications have been thrust upon us...it wasn't a choice.  But looking back, do you think that there was some purpose that this often nightmare road was the fated and destined one?

Just thinking.

And I do hope everyone is feeling their best today, only better!


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  1. Hey,

    I really love this post. It kind of sums up how I feel about the curious position of being thankful for my illness because of the experiences it has given me, whilst at the same time being angry because it has taken so much away too.


    1. What a nice compliment from you, Ruth! How I wish we'd met on mutual book blogs rather than ME ones! Xx