We Share The Same Sky

It's okay Char. The tears are good. Look up. We share the same sky - your tribe and God and you and I.

They are strong, amazing people and parents. God is with them just as with you. Trust. Let go.

Your path is very, very narrow now for awhile. It isn't the first time. It won't be the last either. Remember to feel the hand of Jesus on your elbow as you've felt so many times before. 

I know healing and repair seem irretrievable. Just keep praying. Stay in integrity. Never stop growing. It will come.

And those gold nuggets of connection - there are people out there doing that for your tribe too. Miracles happen every day for them too. 

Forgive yourself for your failings as a mom. They can't forgive you until you forgive yourself.

And being Grandma - it's complicated sometimes and much less defined. You are a traveler who was raised by travelers. Who raised some people who might not be. Or some who aren't yet. You haven't traveled without thought or purpose but it makes collecting people challenging. 

The illness- pain, fatigue, virus of the week, stigma that is M.E./CFS/Fibro - you carried the torch to the cure. You are almost there. 

Write that book: I Suck At Grief. I'm okay with it - I think I am anyway. I sucked at grief too. My undeveloped gifts made the feelings too much. Too hard. That's a conversation we will have on the other side. 

I love you beyond measure. 

Love, Mom

PS. Maury, Bruno, Chad and Jean say hi. Maury is a big strapping guy who looks a lot like your youngest sister. He's quite mischievous with that twinkle that you see in the Boys' eyes - always up to something. Chad is cool with Bentley's choice of seating. Jean thanks you for good intentions no matter what the result and just hopes you don't give up trying. 

PPS. I visit the Rainbow Bridge every day. Bruno is happy to finally have a vacation. He plays a lot with Hank the cow dog and Tito but Jersey kind of keeps them penned in the corner sometimes. Willie still steps on everyone but he's much lighter up here so it doesn't hurt and everybody laughs. 

Duke has really come out of his shell. Mimi is down the street digging in fresh trash every day. She's in heaven - literally:). Stetson has 43,212 leather gloves and 8 popped basketballs. Bruno sleeps on Stetson's back just like the old days and God lets him eat cat poop, but only once a week. Gizmo - he splits his time between me and this very nice Inuit man. (Yes there is snow in heaven but it's savagery stays on Earth). Sabrina is now the queen of everything. 

They all wait on the Rainbow Bridge for their special humans. Hippie thinks Bruno is hot and he is a horn dog - so ya, you know where that's going. Bart and Scotch play with Ron 's labs - they chase sheep all day and they get a good Army tent to chew up once a month. Dave gets a fresh roll of toilet paper to disembowel everyday. Gus - well he was older than all the cats in heaven EVER when he got here so he is the old, codgy sage. He asked to be on the opposite side of the bridge from Dave. Lexi is by my side constantly. She, Cinnamon and Angel are best buds. 

And the cockatiel wants nothing to do with you and has decided to cut all connections. He knows you understand;) He has recovered his tail feathers and has two working legs.  

Gratitude

I'm glad I was taught early that grandparents aren't a given or a right. I'm glad I had parents who made great efforts for me to know my grandparents as their years progressed. I'm glad I was taught to respect limitations but always be respectful about them. 

ME/CFIDS Scam of the day: Call BS on the lazy A$$ name callers.

I'm not buying it and I'm not buying into hearing that it is something people should feel okay saying LET ALONE think it. 

In the last year I have been called several brutal names by my family and also received inscrutable criticism at the hands of people I thought of as my support system. I have to say it has torn me up - just to the edge of still finding the will to keep plugging along in a life with too much pain and too little validation of that pain. Just at.The.Edge.

I have been called a chicken shit by my dad.

I have been told that my grandson deserves more than me because I'm not there to tickle his back or read him a story and then had access to him withheld 

I have been told I don't try hard enough to be a grandma and I should use my 'lucid' moments trying harder. 

I have been called a scammer by more than one person in my family, to my face and behind my back.

I have been called a drug seeker by medical providers with zero understanding of the complexities of my illnesses.

I have people who refuse to allow me to talk about my medical challenges so phone calls are few and far between because the one sided conversations never fully describe my current challenges.

I don't have HIV or Ebola virus. I have CFIDS/ME. I have had it for 18 years. It started on February 2, 1996. It struck me down at the age of 35 and destroyed my career, my health and my ability to care for my children. I am 53 years old now and the cause, treatment and cure are as far away as ever

When I became ill I worked full time and played on three recreational volleyball teams. I played pickup basketball at the park with the guys. I frequently took my kids on long hikes in the foothills of Boulder County. I was in awesome physical condition with an awesome life.

So if all the labels hold true I stopped my vivacious, passionate, healthy life to become a scammer. To make up day in and day out how much fatigue and pain i was experiencing. I quickly gained a lot of weight which gives people the perception i know nothing about how to stay fit or how to use healthy nutrition to fuel healthy living.And I've been scamming since then. Scamming to live at just the edge of poverty, having to leave my kids with their dad because I could no longer care for them. Scamming to acquire, at a minimum $3500 new medical debt per year even after the use of my top of the line government health insurance. I have sold 2 houses to relieve that in the past but there are no houses to sell now. And I keep accruing unavoidable and extensive medical debt each year. It's in the tens of thousands by now.

At the time I became ill there were no tests to indicate what the cause was but there are tests now. And strangely enough even with these ominous test results I am still considered a scammer by my family.

I somehow am able to conjure viral tests that show high titers across the board on subviruses that should be lower post infection. My immune system tests for chronic infection (IGg) is consistently low which means I can't fight long term subacute viruses or bacteria very well. I have a confirmed biopsy of herpes simplex 1 in my lungs which is called disseminated herpes and once it passes the brain/blood barrier it moves around to random weak spots and if it ends up in the brain it is usually fatal. It is very painful and extremely rare.My sleep studies have consistently shown for over 5 years that I get zero stage 3 and 4 sleep which are the stages when the body releases human growth hormone to repair tissues. I am frequently accosted by the virus of the week which takes me down for weeks. At altitude now my oxygen saturation bounces around so I have to wear oxygen which is apparently a free pass for anyone to comment about and ask how long I smoked. I didn't smoke. At.All. But apparently had I been a smoker it would mean that people would have a free pass to say the most rude and judgement comment possible.

I am such a scammer now that somehow I have figured out how to give my husband this same illness so that he too can feel ill every single day of his life with unrelenting pain, fatigue and immune system challenges so that he to can be the recipient of the horrific name calling. And these are from family. His family has been just as horrific as mine. 

Imagine stretching that into the community and medical field and being told for decades that you're not really sick and that it is a mental illness or you're making it up. That shit wears ya down

I have fought so hard for validation from my family because I thought with their help I could keep fighting until there was a breakthrough in the cause and or treatment. These people, my supposed support system, function as the antithesis of a support system and finally I realized by giving them access to my heart and feelings they are contributing to breaking down my reason to live and keep fighting.

I do have now medical validation that I am truly ill but it still isn't enough for this critical, self absorbed family who have forgotten or never knew that the road to grandma's house and heart goes two ways.

We are so graced right now to have medical support to help us bumble along with finding health but they and I know it may be too late. Too many years of medical neglect and outright misdiagnosis and the use of the wrong drugs have left permanent injury for me. There may be still hope for my husband since his diagnosis is fairly recent but his impairment seems even harsher than my own. I can't even describe the depth of grief I feel to see what the illness has robbed from him. It is gut wrenching and heartbreaking.

It's a relief finally to not need my family to validate my experience but the injury left behind from years of failure to act as a support system will be hard healed. I have so little expectation for their depth of character. How else could it be when my own dad calls me a chicken shit and then refuses to apologize? It seems a bad omen and my mom isn't alive anymore to insist he make amends.

I have progressed into the crazy, oddball and rarely seen grandma role. You know - the one with the pink stripe in her hair, who marches her chubby self right into the ocean in a two piece suit, who sings out loud at any given moment and the one with the penchant for finding cool and unique tshirts at the thrift stores? She is me. I am her.

I'm the one who has just a bit to give and it will never be enough or equitable. Our only hope is acceptance and I've little hope for that. It is unlikely we will get close relationships with the magical grand kids and this is such a point of pain but I will not have them used as ways to reward or punish me for my participation which is ALWAYS affected by the limitations of my illness and NEVER equitable. 

In the meantime, because we lack family support to do it for us, we are making arrangements for live in help because  we can't take care of ourselves alone anymore. We are starting to get help with meals and transportation but its been tough because we fall in the gap of being just a bit too young and making a little too much money. 

I am allowed to work still if I feel well enough but it has been over 5 years since I felt well enough to work. I am not sure it will ever come back.

I miss my family and the mountains with a deep and unrelenting pain but my lungs and psyche need clean ocean air around contemporary and advanced medical support. I'm not sure i will ever understand the ease with which these people in my tribe cast hurtful opinions and cast off any sense of obligation. I haven't decided if its a family illness or a cultural illness. Either way it has been devastatingly destructive. 

I am graced to have one sister who is my undying ally and advocate. She was that even prior to knowing the whole story but after a recent crisis intervention meeting she shook her head and just said 'Wow, I just had no idea how complex the issues you're dealing with are'. I had asked my husband's  brother  too because I wanted for him the same kind of advocacy that I have. I'm not sure it's there or sustainable but either way it meant the world that these two came to help us out of our crisis.

There is an army of us previously voiceless sufferers of ME/CFIDS who now with portable technology are rising somewhat metaphorically from our beds and demanding acknowledgement. And treatment and validation. With between 4 and 10 million in just the US the potential for revolutionary change is on the horizon. I hope it comes in time for me and if not at least for my husband and niece. At that leaping off point.

To Walt, Bree, Glenna and all of you warriors - this post is dedicated to you. And to my Sisterla Sherone - you rock.

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

PS. Don't forget to sign up and follow Jenn Brea who is making a documentary about ME called. 'Canary In A Coal Mine'. 

Barry Manilow Has Still Got It!

Flashback:  I'm 17 years old.  It is the summer of 1978.  I'm in between my junior and senior years of high school and I'm in Provo, Utah at Brigham Young University (BYU) Girls' Basketball Camp.


I was there with my friend Kathy Gillespie.  We stayed with my grandparents Bill and Pearl Griffiths in Orem.




That night I was up walking in my sleep, running basketball plays in the hallway outside of my Grandma's bedroom....that dark, long night in Orem, Utah....a 34 year old Barry Manilow was playing in concert at the university.  I was so envious that I could not go see him but I had to focus on making it out of basketball camp alive and apparently my psyche was concerned, thus the midnight hallway basketball game that scared the crap out of my Grandma.




Flash forward to last night, 36 years later I FINALLY got to see the now 70 year old Barry Manilow in concert in Orlando, Florida and it was AWESOME. Hubs won tickets on the radio....105.9 Sunny FM....sweet seats in a Founders Box.  The music was fabulous.  Barry was fabulous.  His voice hasn't lost a bit of its sweetness.  He can still hold a note for 7 days straight. He is still a fabulous musician and he is still really funny.




Payday came and went with no deposit for some unexplained reason so we drove there with a quarter tank of gas hoping it would last.  It did.  (Thank god). Both of us slept all day to get to the point where we felt well enough to leave the house for a few hours.  We had the sideways quizzing trying to evaluate who felt better to drive and we agreed that we would leave early if we started feeling worse (as we had in November at the TransSiberian Orchestra Christmas Concert).




We did a lot more when Walt was healthy and it was only me with ME/CFIDS.  I knew that he could drag me home if I collapsed and he was level, very level so there was just no worry.  Not now. Now there is much worry and both of us are very ill so it is a miracle beyond miracles when we actually coincide feeling well enough at the same time to do something like this concert.




Our seats were in a Founders' Box and we could stand up and move around which has become an essential part of any event including just going to a movie. We have to frequently change positions, from sitting to standing and frankly I'm on the verge of bring a cot with me everywhere so I can lie down too.




But Barry....oh Barry....he wasn't messed up at all and for a few moments in a few songs I was back in my younger days listening to that music, usually at a school or church dance, which I inevitably flowered the wall.  Such is the life of a skinny, tall girl from the other side of the tracks in a teeny, tiny, rural Wyoming town.  But the music....it was awesome, dancing or not.




Every time I get to see one of these old performers I feel grateful to get to see them one more time.  These concerts though.....especially now that we are on disability and could never afford the tickets....they seem very opulent and I think that we (I) have been very spoiled in so many ways.  There was a day when my former husband and I chose to use grocery money to go see REO Speedwagon and then later Bob Seger.  Even while we were just scrimping by on tips and minimum wage.  How did we do that?




So here is the Barry of yesterday - as in just yesterday....looking good dude and.....









Here is the Barry of 1978....

Not too shabby Barry.  Not too shabby.


My hope and prayer is that a cause, treatment and cure are found for this awful illness that Walt and I have.  And Barry reminds me of the message that always came from both my mom and my dad that music is a fundamental part of happy.  So I sing every day.  I hum to increase the nitrous oxide in my system.  I sing Do-Re-Mi for respiratory therapy and I try to learn and record a new song every week.


I just know this:  it is possible to be in incredible, unresolvable pain and still have fun.  Happy is not a constant but it is usually found in song and laughter in my life.  Especially laughter.


Mr. Manilow has started a foundation that gifts old and forgotten musical instruments to the schools around the US that have still, somehow, managed to hold onto their music programs.  If you have an old, forgotten instrument in your attic or basement, even if it is broken, consider donating it to his foundation....for the kids......for the Barry Manilow in the second grade right now who needs that chance to shine.  Here's the link:  The Manilow Music Project


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

A testament to a friend - A Parable About a Giant

Passing through China one day with a friend of mine I met along the way. He is a giant, I guess that’s fair to say.  The load of life that is mine to bear, he took from me, the heavy part always with an open heart.  Giants they say, often act this way, even on days that are bleak and gray. He smiles that big toothy giant grin, even with the load I’ve given him, he never shirks or complains.

 

 Giants they say always act this way, they have no choice, because their hearts are pure in trust, and love.  So each day they practice their Giants Creed, to lend a hand if you can, to those of us they find along the way.  Even if we are small and they are Giants, the lesson he teaches for us to follow, while the Giant precedes down the path with the load I’ve given him to carry. It’s more than half that should be mine.

 In the formation of a Giant’s mind, you have to attend Giant High, in a mountain valley town.  To learn the lessons that are taught – to stand your ground, with your toes to the very edge as if hanging there above the precipice below.  Just you and your big, black friend, must stand guard at the gate, and protect the Jewel within.  You must challenge that horrible ogre that passes by.  Even if your friend is 10 times your size, it is your voice that they hear as you shout without fear.

 And now my little friend, I hope you have noticed that it was always I that led the way wherever we went throughout the day, so you might follow feeling safe and warm.  I stayed with you longer than I should have, making your stands sure and good.  So I take my Giant Crown of Silver Crested Hair, to leave you I must go before, to take my place in the Giants’ land, as only we can understand.

 So now with open arms, you must accept the serf’s load that is theirs, as I have always done.  Always to take that awesome position, to always be willing to take a stand, and lead the way to another land.  I must proceed to clear the way.  My Jewel, you will follow soon, someday.  Remember the days we spent laughing as friends, always we went to the next great event that was ours, to the fun things in life.

 

 

 So now my little friend, I give to you, for awhile that last big Giant’s grin.  Once again I’ve taken the yoke, to clear for you, the path to the land where pain has passed, never to return again.  So when you come you can be sure that I and my big black giant friend, will be standing there, to guide you within.

 You must stand as I have always shown you, with chest pushed out and topknot flowing in the air.  The bravest thing the world has ever seen, has left to go beyond the screen. Goodbye my little friend, look for me there when you get within.

 Your teaching friend,

The GIANT, BRUNO                                               (It has to be awfully easy for a dog to get into heaven)

 By Robert Gary Dotson – December 2013

 

                                  In memory of Bruno Irvine - the Yorkie/Pom/Hairless Chinese Crested

                                                       Born:  January 20, 2000

                                                       Passed December 7, 2013

 

Copyright (c) 2013 - Chardale Irvine.  All rights reserved.

My Constant Source of Entertainment Is Now Only A Periodic Source of Entertainment

The story of why and how I married my husband is fun, well maybe funny, or strange, either way it happened long, long ago - well, 10 years ago - in Las Vegas, Nevada at 11:25 at night, the day after Christmas in 2002.  We decided to get married on the drive from Richfield on our way to Mesquite, Nevada for a little golf junket. I think he asked me near Beaver, Utah...no, don't jump to conclusions! I said, "Sure, why not?".  We stopped in St. George, Utah and bought wedding rings - it was Sunday, I think and not many stores were open.  A helpful police officer pointed us to a store in the mall. 

That story might be another post but it was on the drive back to my place in Richfield that the "constant source of entertainment"  was set into motion.  You see, somehow Walt had conned me into not doing the hanky panky thing prior to getting married.  I'm not sure why I agreed to that other than that it was a new and novel experience for me to try. So I probably thought..."Hey, what the heck?"

So we go to Vegas.  Get married.  Drive back to Mesquite that night to stay in our crappy motel, too exhausted to move. But the next night....well, let's just say we consummated the marriage at the Barbary Coast...which is no longer in existence.  We had a lovely room and made good use of it.

So then we are driving back to Richfield, giddy with excitement and kinda I'm sure wondering "What the hell did we just do?" In fact, I remember we stopped to eat poison food at Sonic in St. Geroge and I had that EXACT thought.

We get back on the road and just a few bites into the hamburger Walt turns to me and says - and I quote: "Honey, last night you made my eyes sore".

It was dead silent as all the air got sucked out of the car - as I slowly, much too slowly, processed what my new husband had just said.  Much like how I have to do mental gymnastics to remember which side of the Rocky Mountains I'm on for directions (East I'm on the Wasatch Front, West I'm in Denver, all around me I'm in Richfield), or what is of the plant that grows on trees in Florida (in Colorado we had mistletoe and in Florida they have M.....(Mistletoe, no its that country that Walt didn't live in but my brother did....Oh yeah! Spain) Spanish Moss.

And BAM!! I figured out that what he was trying to say was "Honey, last night you were a sight for sore eyes".  (If anyone sees a similarity to some of George W. Bush's comment...well, yeah...that's my life). So I say...."I think you meant to say...Blah".  And he gets big eyes and stammers and I started laughing hysterically.  And I kept laughing for 137 more miles, hysterically but off and on.

These kind of twisted commentary were frequent for years but that last couple...well things have been freaking HARD for us due to both of our health challenges so not much laughing has been going on.  But today...he was back in rare form. 

I was complaining about how little I get done now and just expressing my frustration about my loss of efficiency and focus (due to the ME/CFIDS/Fibro and the blasted knee injury) and my dear, dear husband says to me - and I quote:

"Honey, for the last three days your body has been revolting."

Yep.

Due to practice I process these tangled comments faster and I said - and I quote (while laughing so hard I'm almost passing out):  "Uh...I think you meant to say "Honey, for the last three days your body has been in revolt"?

And he says "No, I said it right? For uh the last three days uh your body has been uh revolting."  Long pause as he watches me gasping for air because I'm laughing so hard.  "And I STILL said it wrong didn't I? Damn Autocorrect!"

Yep.

He is now though at 47 brownie points.  Prior to that he had 50, for the first time in our marriage he's over 3 points.  He went to 50 points a few days ago because I got to watch Lionel Ritchie's show TWICE (many thanks to DeeDra Sullivan for that tip).  He lost three for the George W. imitation but still has some points to burn...which I promise he will.  I'll let ya know on that.

A Parable

 It is not okay to say "perhaps you should give up the fight til she's 18" when there are still legal options available to get the child back.  Whenever you are tempted to say it stop. Ask yourself if right this minute someone said that about your kid, you know the one you fixed breakfast for and sent off to pre-school? If this kid was not allowed to come home by the government or school or anyone for that matter....if you heard that would your instinct be to wait until they were 18 to see the again.

It's not okay to say "you should stop hyper-focusing on the missing child because your child who is with you is suffering" unless you and those around you have done everything you can to be there and take care of this child that is there to allow the parent(s) to focus on finding the child..

It's not okay to say "maybe you should give up the fight" because you can't afford it" unless a large group of his or her support system is adding to the infrastructure that allows a parent to fight these arduous battles.

Because if your advice is taken we will look in the mirror every day and whip ourselves for letting the corrupt bastards take our child and grandchild. A child will grow up and when looking back will see that there was no fight for her.