Saturday, October 27, 2012

From the fringe

I wrote this in February 2012. One of my readers, who is also struggling with severe chronic illness, recently commented that my stories about my life make me seem remarkably 'normal' compared to her life. I told her that I don't usually write about the hard times unless I have some realization that I think may have universal application. The truth is I prefer writing about the fun stuff because it is fun and it makes people laugh. It makes me laugh.

But just to make it clear to my confused readers and maybe to remind myself here are a couple of things I wrote earlier this year:

From the fringe. My life was rich and full: family, career, recreational sports and friends. It dissolved in about a year. I was 35 yrs old.  Following a back injury and a nasty flu like virus I crept back to work. I have been reminded of that Virus everyday for 16 yrs because I really have never felt good since then. The fever and chills went away. The achiness and fatigue never left and my immune system has struggled since. It moved from fully participating in society to living on the fringes. The medical community and society are baffled by what is going on with me. Treatments are few and far between and the drug side effects are arguably as bad as the illness. Relationships suffer, working becomes impossible. Finding a reason to go on every day becomes the number one challenge. It amazes me that there is not mass suicide with this illness. Where I used to find self value in the offspring I produced, by the work that I did- now I have to look elsewhere- inside. I have to trust that I have value because I exist, even in this compromised state. My small daily accomplishments - like doing the dishes or going for a walk- are what defines my success. Many days my accomplishment is simply making it through the day without killing myself. Many days are lost to forfeit because the faculties needed don't show up. There is grief every day. On the good days it is over the realization that that is as good as it gets. On the bad days it is utter sadness of the waste of time. Children grow up and maintain their distance. Family conversation ebbs away with the realization that the former me is not coming back. My body has been taken over and I have become unrecognizable. 


I get it ma
Give life half a chance
I know it hurts
But if you go like this 
Your life will have been meaningless.

Ya but if you go like that
Give me half a chance
Wth? When did I write this???

Oct 28 2012 still have no clue when I wrote this. Suspect someone snuck in my phone and wrote it. But fibro fog has created memory blank spots before. 

Dear readers, 

I dream for the day when my illness is recognized and that there is a cure. 

Peace be with you and all that jazz.....

Copyright (c) Chardale Irvine 2012. All rights reserved. 

Saturday, October 13, 2012

Serendipity or Back to the Future?

Ah! If you are one of my regular readers and are here after wondering if I fell off the face of the earth over the last month - thank you for coming back! The "undependability" that comes as a side effect of the CFIDS - that my family is Oh So Familiar with - has been hard at work in my life over the last month.  If you're new Welcome! and thanks for dropping by (and be sure to read my most popular - to date - post "The Perils of Peeing on the Beach")

Our theme - that of my husband Walt and I - over the last month has been both about a recommitment process which has been really but &%^$^%ing hard AND a late 70's/early 80's theme.  As a sub-theme by sister Sherone and I did have a couple of "poopy talk" flashback text sessions of hilarity which frankly, really, honestly, may have been what kept each of us afloat for the rather "enriching" challenges life is throwing at us this last little stretch.

But, to NEVER give the secrets away as the QUALITY of our marriage - ahem, ahem - I won't document the recommitment process (*wink wink* babe - you know I love ya) And, because I'm not quite ready to test the generic humor quality of our family's poopy talk experiences I decided to just write about today.

We were headed to the beach in our minds but hadn't quite gotten into the car yet when Trent Sullivan from Sully's Smokehouse posted a picture on Facebook of a slab of ribs.  Walt looked at that and suddenly our minds changed (this is the second time the lure of Sully's ribs has turned us around from the beach) and we headed to Leesburg for dinner.  (For any of you Wyoming people that know me, Trent is married to DeeDra Towne Sullivan who went to school for one year at Lyman High School and graduated with the class of 1981 with her sister DeeAnna and my sister Sherone.)  The ribs were, as usual, fabulous as was conversation with Trent and a couple of his customers.

We took off towards home and drove by a big yard sale on the corner in Eustis, FL.  They had some nice looking antique furniture and the lawn was covered with items so we made a spontaneous decision to stop.  This really was spontaneous as we have not stopped at a single yard sale since we got on the road 3 1/2 years ago. We parked up the street so they wouldn't see our car and made out way to the sale.  I found a Colorado coffee cup and a Key West coffee cup, which I thought would be THE serendipitous happening of the day since I had put "cheapo coffee cups" on the shopping list two days before.  I also found a vintage Air Force fatigue shirt circa 1960's.  I huddled in the corner away from the yard sale people and told Walt he was going to have to handle negotiating for the shirt because I was pretty sure we could sell it on Ebay for a pretty penny and they would be able to see right through me.  I'm thinking if we got away with $10 for it we'd be doing well. 

Negotiations were remarkably undramatic and we paid the guy $3.00 for the lot of it but felt like things were just a little weird.  We turned around to leave and there was a guy standing there to thank us.  I asked if they did this yard sale every weekend because I'd seen a make-shift donations container in the back.  Turns out the place is a transitional housing ministry and they do a yard sale whenever they get enough donations to make the effort worthwhile.  He shared some of his message and some of his journey and we shared some of ours.  We connected at a powerful level with this young man and I thought THIS would be the serendipitous moment of the day.

Oh, I forgot to mention, I found a Carly Simon cassette tape at the sale and purchased it for 50 cents. This was a profound find because I had been waiting for it's return since it was "borrowed" by my ex'husband's friend way back in 1981 and never returned.  Many jokes have floated back and forth over the years about the "borrowed" or "stolen" cassette tape that his friend didn't remember ever having.  I took this picture holding it and emailed it to my ex-husband with this message:

Subject:  Tell S.T. the gig is up
K.,  I found this cassette that S.T. "borrowed" back in 1981.  Tell him the truth will ALWAYS come out.  You can't steal stuff that you "borrowed" and deny for 78 years that you ever had, and not expect that the victim of your evil ways would not find at a yard sale 2300 miles away in Eustis, FL, the very thing you stole and then sold to buy a six-pack.

I did have to pay 50 cents for it which is the same price as a can of generic cat food that I'm buying with my senior citizen social security check.  I went without dinner of said cat food because I had never recovered fro the grief of missing Carly.  I will be sending him a bill for 50 cents when I can afford a stamp and the nursing home bus is headed for the Post Office.  Now to find someone who remembers what a cassette player is.

Proof. ;D
We left the yard sale feeling totally energized and connected to the universe.  I mean really, coffee cups, making a connection with a young man on the upside of a long struggle and having found a place that we could maybe focus some of our abundance on out here so far from our own families?  What about that wouldn't seem like the MOST amazing thing that the universe could throw our way.
Things have been tough for us lately and we were having so much fun that Walt suggestted we treat this as a Date Night and go to a movie.  I was tired but happy so I reluctantly agreed.
We ended up going to see the movie "Argo" with Ben Affleck.  Neither one of us even knew what it was about but we quickly found out as the narrator staged the movie at the beginning.  It is about events in Iran in 1979-1981 and we were each quickly thrown back into figuring out where we were when these events happened.  I was in Wyoming playing basketball on scholarship at Western Wyoming Community College.  I had just found out I was pregnant and well, that  was pretty consuming for a good little Mormon girl to be dealing with.  My grandmother also died that month and I got back together with my kids' father.  I was pretty consumed with personal stuff.
Walt, though, was in Turkey when this all happened in the Air Force.  This was all like someone making a movie about part of his specific history.  We sat at the end stunned and amazed, as he remembered details of how things looked from the country that borders Iran.  We gotup to leave when only one couple was left in the theater.  We walked past them and the guy said "Great movie, huh?"
And I said, "Yeah, and he was in Turkey when all this happened" and pointed to Walt.  And Here, HERE is where true SERENDIPITY truly played out.  The man instantly connected with Walt because he had been in the Coast Guard and stationed nearby a few years later.  As often happens when a couple of military guys connect, they took off with stories and we stood talking for fifteen minutes.  We made our way out and they were still talking about shared perspectives down the hall, out the door and onto the sidewalk. 
They were just turning to leave and I said to the guy "So, I'm just going to throw this out there because I was JUST talking about this last week.  I lived in Seattle back in 1988 and I rode the bus to work.  I sat and talked with this man every day who was in some high position in the Coast Guard.  I don't remember his name or his rank but he helped us out alot by volunteering he and his wife to care for our kids while we went house hunting in Colorado after my first husband got laid off.  And I had really enjoyed all those trips to and from the city.  I don't remember what we talked about or how we had much in common except we were the only two people who seemed to be able to make eye contact in the whole city."  (this is not verbatim but captures the gist).
"So, if you think of any way you might find out who the commanding officers were in the Coast Guard in Seattle in 1988 let me know."
He agreed to think about it and as he turned to leave he asked our names and introduced himself and the woman he was with.  Walt just mentioned he was a software engineer somehow and the woman says "Wow, I'm in IT".  (I always give him crap about introducing himself as a "Software Engineer" because I don't think the average person knows what that means).  Turns out she new what a software engineer is because she IS a software engineer herself.  She works at a local company and has for the last 20 years, they work on the same computer platform and that they both program in the same language.  THIS is even a bigger "coincidence" that the military connection.  These people who code in the language he knows are a rare breed.
And as she and Walt took off talking IT stuff the guy and I started chatting about our frustration of not being more aware when the things that happened in that movie happened and we danced back to talking about Vietnam and found out we are both Vietnam Prisoner of War aficionados (though his depth of knowlege far exceeded mine).  But, he immediately threw out the name Robinson Reisner, who I had heard speak, and we were off and running, AGAIN.
There were actually a few other, not quite as noteworthy, shared experiences.  We really, it seemed, could have stood there and talked all night but the guy decided it was time to go, probably just a little freaked out by all the connections.  I would be too - if I wasn't looking for them (thank you Dr. Faith, the town of Cassadaga, FL, and two or three other amazing influences).  But really, could someone actually plan that kind of crap?
As we left I told the couple that we would obviously be living in the late 70's for the next couple of weeks. This should be interesting.
And I just want to know:  Is that Ben Affleck's real hair?
Peace be with you and all that jazz.....
Copyright - (c) - Chardale Irvine - 2012.  The contents of this article may not be published or reprinted without the permission of Chardale Irvine.  Thank you.