Posts Tagged ‘forgiveness’

Lately, I find myself thinking of the exhaustion from which I cannot escape as unspeakable. It is unspeakable in all its definitions.   Dictionaries describe the word unspeakable as unutterable, indescribable, inexpressibly bad, horrendous, beyond description and not to be spoken.

My experience of it is all of those things. It is as though there were an invisible gag stopping me from speaking of the exhaustion and if it were removed, I still could not find words for it – such inadequate things, words. Yet we often have only words with which to communicate, to try to convey to others any ideas at all.

Medical people, even those who sincerely want to help us, still use that completely inappropriate word: fatigue.  How I wish I could strike that word from the dictionary!  At the least, I wish I could strike it from the minds of doctors and from the name given this thing that is truly – unspeakable.

Recently, I was a patient in the cardiac emergency room of a major hospital.  People were so kind, so competent!  My gratitude for their care is immense!  And yet, I can still see how the intake person stopped typing when I had to name my overall diagnosis.  Her face well-schooled, only her fingers betrayed what must be policy.  Nowhere in that record will it say the name of the disease with which I have been diagnosed for over 20 years.  Only the measurable symptoms, including this cardiac issue (an electrical glitch) will be listed.

Inside, I became very small.

Inside, I felt a reflex of need to defend myself; “I did not diagnose myself!  Doctor after doctor after specialist after specialist have confirmed it!   I have documentation!  Do you think I want this label?  Don’t you know that every reputable agency has acknowledged that not only is this thing organic and real, but that they have compared the level of disability to people in end-stage renal failure and stated that patients are more disabled than those undergoing chemotherapy or even an AIDS patient 2-3 months from death?  Don’t just dismiss it!”

Inside, I remembered my brother, who, dying of AIDS in 1995, suddenly looked at me with sadness and understanding and said “Even I am less exhausted than you are.”  We had been talking about him, not me!  I hadn’t even been thinking about my own problems.  So, I have lived that comparison, and know it for the truth it is.

I’m just so tired of explaining.  I am so tired of trying to put words to the unspeakable.  I am so tired of taking care of the ramifications of this disease (even in the hospital several years ago, after major surgery) without the understanding of those who should understand best.  I am so far past the word exhaustion that it is truly – unspeakable.

YES – I know there are worse things!  Oh, believe me, I have seen some things that could have come out of the imagination of Edgar Allen Poe, and yet there are worse things than those!  But this thing, oh what a humbling thing…

…and therein I failed.  I failed in accepting as a gift, this lesson of humility, this opportunity to forgive.  After all this time, does it really matter if strangers understand what I go through? My Father knows what is suffered in secret.  My Father knows if I have made use of it and offered it to be made use of as He knows best.  My Father knows the gifts I’ve been given – the obvious and the hidden, the sweet and the unpalatable – and He tells me I must make use of them, make them grow, share them and account for them.

Thankfully, my Father also forgives and helps me get up when I fall down. 

Thank you for helping me learn from the unspeakable, Father.



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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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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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Just when I thought I didn’t have another post in me…

Lately I have come across several blogs which dealt, in part, with having lost friends as a result of becoming chronically ill. It got the mental wheels turning again, words putting themselves together in my head and demanding to come out. After 20+ years of living with a slowly worsening chronic illness, I can say I’ve certainly dealt with the effects of it on friendships.

A long time ago, in a book I’ve purchased many times because I keep giving it away to others, I read something I’ve never forgotten. The book is Sick and Tired of Feeling Sick and Tired – Living with Invisible Chronic Illness by Paul J. Donoghue, Ph.D. and Mary E. Siegel, Ph.D., both of whom have invisible chronic illnesses. The part I’ve never forgotten? It went something like this;

When you’re sick, people expect you to do one of two things: either get well or die. When you don’t do either one, they don’t know how to handle it.

In my experience, some people head for the hills quickly. Some really try to keep the friendship going, but eventually fade away as it becomes apparent that common ground was based more on activities than on each other as individuals – when we can’t keep up the same activities, time together can become awkward. Some become temporary fixers – staying with us as long as we’re willing to try every idea they bring to us and when those don’t work, or we finally say “Enough!” they shake their heads and begin to blame us for remaining ill. But, sometimes, whether someone newly met or someone who was there in our before life, a precious – jeweled treasure of a soul refuses to define a friendship by surface things.

I’ve ached and shed many tears over the might-have-been, wish-I-could aspects of being ill. When it’s to do with an activity it’s bad; when it’s about people being in – or opting out – of my life it has often been deeply painful. From the distance of 20+ years of experience, though, I can see that the reactions of others to my illness have more to do with them than with me.

Those who head for the hills quickly may be running away, not from me, but from the purely human fear of facing the fact that life can change in the blink of an eye. Mortality is a tough thing to look in the eye. I know. It’s much easier to forgive their disappearance now that I can see that it’s about them – not me.

Those who fade away when shared activities can no longer be shared can’t be blamed either. There evidently wasn’t a deeper connection – it was more a case of enjoyable acquaintances than the deeper thing I think of as friendship. Perhaps I thought there was more, but it is evident there wasn’t – so it’s merely a case of misinterpretation of the relationship. No blame in that; sadness maybe – but not blame.

The reactions I’ve found the most difficult to handle are the temporary fixers. They mean well, they really do. But in the end, they’re afraid. They don’t appear to be afraid, in fact, they usually appear to be certain, even aggressive, but I believe they are terrified even though they don’t realize it. Having enjoyed good health or recovery from ill health, they cannot come to terms with the fact that sometimes there is no cure, no treatment that makes us as we once were, let alone that we’ve come to terms with it. They often grow angry with us as they clobber us with their insistent “If you’d only do [fill in the cure/treatment of the day] you’d be well! You must want to be sick!” Oh, how that hurts! Even from total strangers! Yet, once again, I see fear beneath. If we’re sick and can’t be fixed, it might happen to them! Now that I can see that, it’s much easier to be understanding and the pain diminishes greatly.

And then there are those rare jewels. Ah, what treasure! Those precious few, whether old friends or new, who accept us exactly as we are. I’ve had to say farewell to some who were called home to God. My children were even overheard to say at one point “Why is it that all Mom’s friends die?” Oh, how I’ve ached for the loss of those dear friends – and how I love the memories and lessons they left for me!

Of those who have never known me healthy, but who offered true friendship, their only question has been “Will you help me understand what you need?” They are/were precious few indeed, but all the more precious for being so few.

And one, just one, who has known me for decades –well and ill – and who has never gone away even as she pursues her own life and enjoys her circle of active friends (as she should!) We aren’t in touch often, but she never lets me feel forgotten. She has – quite astonishingly – continued to be a loving presence in my life. Though I know she prays for me to be well; her prayer is for me, not because I have let her down by being sick.

No, I don’t have a circle of friends like many people have. Sometimes that hurts because I long for some idealized vision of normal and because I foolishly fall into fears of a future that hasn’t even come. But, I wouldn’t give up the lessons of seeing clearly and learning both to forgive and to treasure!

Normal ain’t all it’s cracked up to be 😉


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