Posts Tagged ‘explaining to others’

Though it is a rare thing for me to post research-related items, I think that for those who might have missed it, it is important that I do my share.

It may help in explaining to others.

***Edit Note: The CBS footage is now  on YouTube at the following address and is viewable below:***


The original CBS link is:


CBS video only link:


Though it is true that there has been evidence for many years that this disease is real, anytime it is said with some authority and broadcast, anytime there are multiple agencies involved in a study that once again proves it, it is worth attention.  Whatever could have been done better – at least it said the words.  REAL  DISEASE

Personally, I feel that though there will doubtless be those dinosaurs who refuse to be budged no matter how big the clubbing, I will have more courage to say “If you doubt, then your information is completely out of date and unsubstantiated by scientific facts.”  

My husband watched it separately from me and before I told him my reaction, I asked for his. These were his words:  “You are vindicated!”  

 Make no mistake, he has never doubted me – he meant it for all those who have ever doubted any of us, who have ever mistreated any of us.  He has been at my side when a renowned neurologist referred to “so-called CFS” while still forced to acknowledge the evidence of neurological damage.   My husband never forgot that incident (though I had), a number of years ago now, and said last night “Take that Dr. M…!”   (That was not a Benedictine attitude at all, but I have to admit it felt good to have him cheering for me!)

I’ve shared my husband’s reaction here because I think it’s an indicator of the potential effect of the CBS piece on others who are not patients.  Because it gives me hope that I might live to see a day when I don’t feel a profound sense of dread when I have to say my diagnosis out loud. 

And most of all, because I hope it helps someone who reads it to feel uplifted.

Funny how the dinosaurs have treated us, yet we are banned from donating blood 😉 

Ahh, so many opportunities to learn true forgiveness!



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Quite awhile ago, I published a post about how I handle “The Dreaded ‘How are you?’ “  Now, I find, in a new time of my life, that I have to re-think it.

The old post still has merit, but no longer does it work in my life with my spouse.  Sometimes I need to be clunked over the head with the obvious; thankfully I figured this out in time to have a quiet discussion with my husband rather than a lump on my head 😉

I’ve been dealing with this disease for a long time.  Long enough to have passed through a number of phases of life: raising kids who were adolescents when it began, seeing my kids become adults, marry, begin their families…

In those phases are also phases of my relationship with my husband.  He worked very hard and brought work home every evening.  Dinner times, weekends, and vacation times were, while the kids were home, time for family.   During all that, we also made time to remember we were a couple before we were parents, fancy dinners made in our own kitchen after the kids were asleep…you get the idea.   Now he is enjoying a well-deserved retirement – which makes me very happy and which is teaching me new things about community.

And during all of those phases, I have been sick.  Dreadfully sick with this disease.  Legally disabled though I kept fighting to be able to lose that label.  I also fought to minimize the impact on my family.  Putting makeup on just before they were due home, countless things they’ll never know.  Among those things are some that are just part of who I am.  Today I learned that though they were effective for over 50 years of my life, they are not always effective anymore in my relationship with my husband.

So, what’s the big revelation, you ask?  Okay, maybe you didn’t ask but since I have control of this keyboard, I’m going to tell you anyhow – trust me, I’m getting to it. 

I’ve always been a person who just handled it.  It being whatever came along.  When I got sick, it was the same, I handled it.  Afterall, nobody was home, they were at school or work.  If I sat on the floor of the shower in order not to fall down in it, I waited until I could get myself back over the side and lie on the floor where I waited until I could sit up; where I waited until I could get a robe on, where I waited until I could stand up, where I waited until I could stumble back to the bedroom.

Because I couldn’t stand up long enough to fix something to eat, I grabbed quickly at what I could – a chunk of bread, a banana – and stumbled back to my couch or bed until I could manage to eat it.  I often drank from the bathroom taps, they were closer than kitchen.

Eventually, I planned ahead, keeping emergency medicine and a few other helpful things in my nightstand.  Years passed and a friend I finally confided in talked me into getting a shower chair – which meant admitting to my family that I needed one – not easy but a big help and something I’d not even thought of – being one who just handled it.

During all those years, I dodged, quite artfully I will say, the polite question “How are you?”  I dodged it because I didn’t want to burden my husband with a laundry list after he’d had a long day himself.  I dodged it because it was awkward; I didn’t want to lie and didn’t know how to tell the truth.  I dodged it because I didn’t want to become the person people avoid.  I dodged it because it didn’t occur to me that anyone would even want a real answer.  I dodged it because I am that person who just handles it.

Looking back, I’ve just handled some amazing things in my life.  Not the least of them 20+ years of a poorly understood, life-altering disease that can garner eye rolls just by naming it.

So we have 20+ years of me saying as little as I can about what happens to me on a daily basis.   Today I figured out it is no longer a service to my husband, now that he’s retired.  There’s that new phase, he’s retired now, he’s here, he sees me with this disease like never before and I’ve been presuming I know best how to help him live with it, too.

 Here’s what it took for me to arrive at that little well-clunk-me-over-the-head-and-call-me-goofy moment.

It was late last evening, we’d been watching TV in bed where I’d been for many hours as I was unable to sit up and was having signs of neuro stuff breaking through (auras, myoclonus.) It was time to begin the ritual of teeth-cleaning and pill-taking before turning out the light. (Ever notice how much longer it takes to get ready for bed when you’re over a certain age?  Sheesh!)  I got up and was walking toward the bedroom door when my husband said something.  When I turned my head, the room spun and I could no longer see.  It’s happened before – countless times  – and as always, I handled it. 

I continued to make replies to what he said, I knew where the door was though I could not see it, got through it and nearly went down the staircase the hard way as my balance was suddenly gone.  Adjusting for the lurch to the right, I crashed into the bathroom doorframe on the left.  I found the light switch and got jumpy, sporadic visual confirmation of where things were.  A controlled fall  let me use the facilities and after I thought I could avoid crashing into anything else, I stood at the sink waiting for the visual to catch up.  I handled it. 

I got my nighttime pills and could see better so I headed out of the room, only whapping myself twice as the balance issue leveled out.  Getting back into bed, I turned out my lamp still not seeing quite right and still handling it.  Then the migraine pain hit – aha! that’s what had been coming.  And instead of telling my husband what had happened, what was happening, I settled in to continue handling it, turning away from him, saying nothing even when he got up and I was desperate for an ice pack and the emergency med he would have been happy to get for me.

This morning it finally occurred to me that he might have felt hurt that the woman who’d been chatting with him a short time earlier had gone silent and kept her back to him for reasons he couldn’t fathom.  So, I finally, belatedly, did the obvious,  I talked to him about it!

And now we come to the moral of the story.  The further answer to “The Dreaded ‘How are you?’ “  A different approach to handling it.

I have learned today that my other ways of handling that question work for most folks in most situations.  But sometimes, sometimes it is the far kinder thing to ask the other, “How do you want me to handle it?”



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In the wee hours of the night, I reach for a book and a tiny light to distract me from the torment in which I find myself.

So, the scene is set and I’m betting I’m not the only person who has spent time in it.

Though many people are prey to tearing themselves to bits when they’d never do the same to another, I think that those of us who are chronically ill are especially vulnerable.  This is no helpful examination of conscience, this is a mental self-flagellation of a severity that is completely out of balance.  The catalyst?  Fill in the blank and then multiply it by years of disabling physical illness and the resultant wear and tear.

But last night, the book I chose held out an answer in something I’ve read before but never seen – never felt – the way I saw and felt it last night.

Now, a new scene unveils itself:

It is the 6th century AD.  Late at night in a stone building high in the Italian mountains the wind howls and seeks entrance.  The occasional torch lamp flickers – not too many of them, just enough to see the rough stones that make up floor, walls, and low arched ceilings.   The muffled footsteps of one who hopes to pass unnoticed whisper across stone and down a hallway to a smallish wooden door.  A soft knock, a creak of hinge, and a monk of some years enters a room where a younger monk lies unable to sleep.

The younger monk rises to greet him, but  motioned by the elder, sits back down upon his simple cot. The elder, carefully putting his lamp upon a small table, seats himself upon a wooden stool, the only other furnishing in the tiny room.  Unable to bring himself to meet the elder’s eyes, the young monk waits in silent misery, having earlier been strongly chastised by the Abbot after several softer, private attempts to teach the young man.  He has been given this small space to separate him from the community – a last, distasteful resort and very hard for the young one to bear.  He is alone, forgotten – or so he thought until this surprising visit in the deep silence of the night.

Softly, the elder begins to speak.  Kindness and understanding flow gently like water moving steadily around pebbles.  In the flickering light, the young monk meets the eyes of the elder in astonishment.  The Abbot has sent him that the younger might not despair.  The one who chastised has bound up.  The one who reproved, still loves and is willing to welcome.  None are forgotten – ever. 

Shall I then, not be my own Abbot in the times that seem unendurable?  Will I not send my own elder to comfort my despairing self within the cell of my anguish?

My night is now calm.  My self-flagellation ceased.  My perspective restored.  I will visit this place high in the silent mountains within me often, knowing that there I will find balance.  There I will find  –


Holy Rule of St. Benedict  Chapter XXVII

A 1500 year-old Rule brings comfort to a chronically ill wife/mother/grandmother  in 2011 America.

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For those who might not have found them before, I’ve put several links on the side of this blog regarding myoclonus, migraines, and the particular spirituality I embrace.

I have not listed sites for ME/CFS, CFIDS, CFS, or related acronyms or descriptions because such sites abound and there is some contention among people in regard to approach, politics, etc. One can type in those and other search terms and find the site(s) that best fit the individual. I would caution that one verify any information gathered from such sites and not assume that all are authoritative.

I hope these are helpful. I will be happy to consider adding related links that offer uncontentious information, especially about the less often talked about symptoms of this disease.


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*** Before I get lost in remembering, let me remind anyone newly diagnosed that you are very likely to get better – and very unlikely to end up like me after 20 years!   Please do not let anything I write get you upset!  Above all, if there is one thing I can give to anyone out there reading this, it is this – sick or well, your life has value!  It can be full and wonderful and filled with opportunities, even when (and maybe especially when) one has to change horses in mid-stream.***

Okay, that said and deeply felt, I have officially completed my 20th year with this disease.  As I’ve said before, I am deeply aware that there are far worse things.  I have seen things no one should have to see, let alone suffer and yet there are things worse than those.  However, that there are far worse things doesn’t make this thing an easy thing. 

Each November, I find myself remembering how it all happened.  I am luckier than many in several ways, not the least of them having had good medical documentation to back up this nebulous, elusive, life-changing thing that happened to me – and by extension to all whose lives intersect with mine.

I had taken a job selling jewelry in a department store for the holidays.  I was 34 with a husband and two children.  There were 30+ people who worked in my department.  It was close quarters.  My co-workers began coming down sick with some kind of “bug.”  Everyone who got it became very, very ill before they got better.  Then came my turn. 

It seemed like some kind of influenza.  I ached – oh how my legs hurt!  I didn’t know whether to sneeze, cough, or blow my nose at any given moment.  I was hot and had chills.  The headaches were unlike anything I’d felt in my life.  My throat was raw, my neck stiff with swollen lymph nodes.  My teeth hurt. I remember being at home, falling on my knees praying not to be called in the next day when I was scheduled to be off.  But they did call me in – and I went!  Was I nuts?!   Though I have ceased being mad at myself for it, I will always wonder if things would have been different if I’d only cared for myself as I’d care for others.  I fervently hope I didn’t pass it on to anyone else.

If I wasn’t nuts to have gone to work so sick, I sure thought I’d gone nuts when things got worse.  And they did get worse; much worse.  I was losing the ability to read.  I’d look at the computer screen to enter a sale but it didn’t look like an earth language.  The big boss said “That’s okay, someone else will enter the sale, you just sell.”  And I did!  Since it was a fine-jewelry department, we did our own stock (common practice to minimize theft.)  I was in so much pain I couldn’t get down on the carpet (which had a strong chemical odor) to put stock in the drawers.  The big boss said “That’s okay, someone else will do stock, you just sell.”  And I did!   The big boss said “We need help in toys and since we want you to start in management, go over there and run a shift.”   And I did!

Each night, I stumbled out into the parking lot, sicker than the day before. Unable to trust myself in traffic, I drove the side-streets to get home.  I stripped out of work clothes and fell into sleep that had more in common with coma.  This lasted from the first week of November until December 15.

I went into work that day but I didn’t last long.  By then, I couldn’t read at all.  I couldn’t form complete thoughts.  I couldn’t endure the pain anymore.   I know I walked past the office of the big boss, going to the little window at the security office.  Mumbling something incoherent, I handed  my keys to a surprised clerk.  I think I put my coat on because I did have my car keys and I was in the habit of putting them in my pocket.  I remember shuffling out through the automatic doors and thinking something about an emergency room and dying.

Yet, even though I remember that thought, I also remember that I didn’t quite understand it – didn’t quite know what the thoughts in my own head meant, didn’t understand what an “emergency room” was.  I did have an idea that there would be people there and that I wouldn’t be able to tell them what was wrong.

I don’t remember driving home.  I can only thank God that I didn’t kill anybody.  I remember being in the driveway and scrabbling at the car door, knowing I had to do something but not understanding what or really, why.  I remember that my husband opened the door to the house as I got to it (he said later it was because I’d pulled into the driveway but wasn’t getting out of the car.)  I remember that I fell into his arms.

I know that he must have helped me to sit on the couch because I remember falling over to one side, too weak to sit up, unable to speak.

In the months that followed, it was determined that the Epstein-Barr virus was raging off the scales in me.  It was determined that I was affected neurologically and immunologically.  I could not read.  I could not write.  The headaches were indescribable.  Waking was like fighting to come out of deep general anesthetic.  Staying awake was like trying to breathe while in the grip of a tidal wave.  I, who had previously had no idea humans have lymph nodes other than in the neck, now knew where every last one was located thanks to the pain.  There is no way, even after all these years, to describe the whole of it.


I didn’t know it yet, but my life had changed forever.


I will end Part 1 here by saying that I still struggle with acceptance.  I will also say that if life had gone as I had planned, I would probably not know how blessed I am as deeply as I know it now. 


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Today, as I struggle with sadness – not guilt – over what I must admit I cannot do, I find myself thinking repeatedly about two things that occurred yesterday.  (At least I think they were both yesterday, with my inability to remember things in chronological order – who knows? 😉   )

I told a friend that I live life on the sidelines.  That’s true.  I also said that I was mostly at peace with that, also true – though it’s taken 20 years to get there.  And “mostly at peace” does not mean I don’t experience sadness about it – I’m a person, not a statue.  But (ah, there’s always a “but,” isn’t there?) life on the sidelines can be very good for the soul.

I’m picturing the scenes I’ve driven past of kids playing soccer on a green field in a lovely park, parents and friends in lawn chairs and on blankets on the sidelines watching the game.   Thinking of myself as sitting on the sidelines of the game (life in the world), I must admit that I don’t watch much of the game anymore.  I’m not sure I ever did since I remember that even as a child I paid more attention to the  hidden life in the park.

Okay, metaphor established, let’s go forward with it. 

I’m on the sidelines where I can hear and see the noise and activity if I want to.  I smile at the cheers of goals made, I watch the people.  Eventually, all of that noise and bustle fades into the background, and I become aware of the earth pushing up under the blanket on which I recline.  My gaze wanders up through green leafed branches to the blue of the sky.  I am no longer aware of the game…caught up in the color of leaf against sky, texture of tree bark.

I follow the texture of the tree downward to where it meets the earth, astonishing intricacies of color and life upon life as I, without words, study the moss which has founded a world within a few inches of bark.  In my small space of shade, there is a vastness of creation and I am privileged to glimpse part of it.  Worlds within worlds…from the infinitesimal to the infinite.

Cool earth meets grass and root of tree.  Within the grass, so many other plants, and lives lived within what must seem to be endless forest.  Yet to me, it is only inches.

Life on the sidelines…tell me, what is it again that I thought I was missing out on?

Yesterday, I looked out my window, feeling a bit blue because I couldn’t go outside.  I noticed a movement in a much-neglected flowerbed.  A female robin (yes, you can tell), struggling with a collection of dried grasses that must have weighed at least as much as she did. 

She pulled, twisted, dropped some, picked it up again – completely engrossed in her determination not to leave behind a single blade of that grass.  Unaware of a watcher in the window, she would not give up on what she needed.  I don’t know how long she’d been working at it, but while I watched, many minutes went by.   I wondered why she didn’t  take some and come back for the rest before I saw it from (what I imagined might be) her point of view. 

This was treasure.  There in that tangle of grasses was the foundation of a home.  She wouldn’t risk leaving some of it behind – it could be stolen or blown away.

In us, in our lives, hidden and filled with suffering though they may be, is treasure too.  In them is the foundation of home.  We struggle with a tangle that seems far more than we can manage, but we don’t give up (even when we think we want to.)  

 That robin eventually flew off with every single blade of dried grass she needed.   We gather every single scrap of life we find – and though to bigger creatures it might seem silly, futile, or not enough – we know it has great value.  Every particle of it.  We work for it every minute of every day, refusing to allow any of it to be lost – and, however it appears to others,  it really is worth the struggle – even if it’s heavy.  In my soul, I believe it’s worth even more because it’s heavy.

Being at peace with what we can’t change while refusing to leave even a scrap of our definition of  life ungathered.

Life on the sidelines and robins – lessons everywhere.


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…a soup of initials.  What kind of life do they have in common?

I didn’t put this video here to ask you for money.  I didn’t put it here to put down the good doctors I’ve found – I thank God for you and pray for you!  I put it here for those who need the support of others leading these hidden lives.  I put it here for those who are healthy and seeking understanding.

I have been very fortunate, early documentation of a massive hit with the Epstein-Barr Virus has allowed me to experience less medical abuse than many (though I’ve certainly endured some.)

But there was a time when I sought out a local support group just because I needed to see their faces.   These are the faces.  These are the lives.  These are the tears.

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