Couldn’t Take It Anymore

I thought I was alone.

I wanted to be alone.

I thought.

 

Weakness, pain, exhaustion.

No escape.

Warmth at the pond.

 

Old bench,

Old friend.

Slanting light, just enough.

 

Nothing here.

Gone already?

Not winter yet.

 

Quiet, quieter, silent inside.

Sight sharpens.

Still fish, just beneath, unmoving.

 

Dragonfly on grass.

Shhhh, so still.

Baking in last of sun.

 

Something moving.

Turtle in clear water.

Swim, rest, swim, bask.

 

Weakness, pain, exhaustion.

Strength to bear.

Warmth at the pond.

 

I thought I was alone.

I was never alone.

I know.

 

Peace.

 

 

 

A Great Analogy

I came across this just now and think it’s a great way to help explain the exhaustion to others.

 

http://invisibleill.wordpress.com/2011/09/30/fatigue/

 

Peace.

Dragonfly Wings and Chronic Illness

My brain is not up to the task of putting into poetry an experience that was sublimely poetic.  So, please forgive my many words in my effort to clarify my thoughts and share something that was very meaningful to me.

In a poem I posted recently, “On the Necessity of Being Still” I mentioned the return of the red dragonflies I’d thought had not come back this year. The gift of those tiny creatures is what I write about today.

Last week, needing solitude and immersion into the natural world, I used our electric cart to visit the pond.  It was close to 5:00pm and the sun was playing hide-and-seek behind our neighbor’s trees.  The shady places having become way too mosquito friendly and the weather cool, I sought the sun and sat on a bench to just be for awhile.  The red dragonflies were all around me – a special delight since I’ve found them not only beautiful, but willing to trust and use me for a resting place if I sit in the sun and remain still.  How they make me smile!

As I sat and watched them, I saw two choose each other as mates.  I watched as they agreed to fly in tandem and began the flights that would lead to new life.  After a bit, still in tandem, they came and landed on my thigh, resting in the sun.  As might be imagined, I remained very still!  In the course of only minutes they flew off and came back for a few seconds of rest over and over.  Then something changed in a very subtle way.

Still in tandem, they came back and settled on my thigh again but this time, both of them lowered the angle of their wings until I could see, though not feel, that all eight wing tips were touching my leg.  Seconds of stillness on all our parts went by.  Then, having dared last year with a single red dragonfly (the only species that has seemed to invite this) I slowly moved a finger along my leg until it was level with their wings and dared to gently stroke the upper edges.

We sat there quite awhile, all three of us resting in the sun in trusting companionship before they took to the air and I took to my cart.  I cannot express how deeply peaceful and sublimely privileged I felt!

As I reflect again on that experience a metaphor of sorts presents itself.  I dared much in touching these astonishing creatures – but did so with what seemed to be their invitation after a trust had time to develop. I dared touch only the top edge of their wings, knowing that to touch the impossibly delicate lower edge could cause them harm.  They seemed to eagerly share part of their hidden lives; and more, invited me to spend some time within it.

I am so often so terribly ill.  Most who read these words are so often so terribly ill.  For me and for many, even our best times are times when we are simply just a little less ill than the worst times.  It is very easy to be afraid of the future, to be afraid of the derision that too many of us have encountered, to grow so much into the fear that it becomes more natural than trust.  It is very easy for the necessity of solitude to become a habit of isolation.

These creatures, so tiny compared to me, so easily harmed – trusted and by doing so gave me the gifts of peace, of companionship, of awe, of a sense of connection to the entire world.

These jewels of the natural world, by bravely sharing themselves, have illustrated for me that we all, big or small, well or ill, have been given gifts to share and no matter how small we think the gift is, the sharing matters.

Peace.

 

Not about being ill – but still about my life.

Fair warning –  this is a happy announcement of a religious nature as well as a request for prayers 🙂

I thought about labelling this as OT, or Off Topic, but since there is no separation of my life from my spiritual life – they are not two different things – that seemed inappropriate.

 

 

Last Saturday evening at the 5:30 Vespers service,  I had the blessed privilege of being received as an Oblate of St. Benedict Monastery!

(For those interested in knowing what that means, there are links to the monastery and to information about oblates to the right.)

Do I present myself now as some holy person?  Far from it (though we are all called to that.)  I am what we all are, another soul walking with God always near, stumbling often over my own shoelaces.   I am still wife, mother, grandmother, and all too often, pain-in-the-backside.

Part of the ceremony asked me to respond to the question of whether I promise to persevere in this path for the rest of my life.  My answer (the answer of my heart and of the formula of the ceremony)  “With the help of God’s grace, I will.”

I ask for your prayers for my perseverance.

You are all part of my daily prayers!

Peace.

On the Necessity of Being Still

I write this from bed where I am recovering from one of many fierce migraine attacks this month.  I mention that because, though I will no doubt edit this many times as usual, I am more likely to miss the obvious because both the attacks and the medicine to abort them make my cognitive challenges more difficult to overcome.  So, please forgive me if this is rougher than usual.

Yet, all that said, I feel compelled today to write about something I’ve been mulling over since my last post – another lesson reinforced through a visit to the pond.  Though the necessity of stillness, rest, quiet, peacefulness, is enforced through this illness – it is far more than what might seem at a glance (sometimes even to my glance!) a physical necessity and consequence.

 

 Be Still

Quiet electric cart for legs,

I am carried to a refuge.

Sun and breeze caress painful skin.

Difficult times without and within.

 

A bench awaits but the way is hard,

Though I know it’s always worth it.

Body in pain and spirit longing,

True rest comes inside belonging.

 

I sit and look, very small inside.

Silent plea to God, teach me.

Thoughts drift, words disappear.

Vision ranges from far to near.

 

Reflections on water first blind my eye.

A breeze disturbs and clears the way.

From cold dark depths a turtle rises to drift,

No thoughts to sort, no dilemmas to sift.

 

Vision focuses even nearer to hand,

I feel my face light with joy,

Red dragonflies I’d thought never came this year,

Sit here with me, how long were they here?

 

They sit in the sun on blades of long grass,

Wings held low to absorb and soak.

Then I look closer, through the weeds,

And there I see more of my Lord’s seeds.

 

Still as a statue, one of this year’s youngsters,

Beautiful, intricate, so easily missed!

A tiny frog sits between water and land,

Hidden and patient, a jewel here at hand.

 

In the midst of suffering, a lesson,

A grace, confirmation again,

In stillness and quiet are the finest of treasures,

Each shall have what is needed, in infinite measure.

 

“Be still and know that I am God.”

Psalm 46, verse 10 (verse 11 NAB)

 

Peace.

 

 

 

 

 

 

 

When Surrender Isn’t Giving Up

It’s been quite an August! One which feels like it surely has been at least 90 days, not a mere 16.

I’ve had a good deal of reason in these 16 days to think about choices.  Currently, I’m paying a big physical price for some of my choices and have been on an emotional rollercoaster about others.  No more.  A simple quote changed all that turmoil yesterday, just when I was a broken-down tearful mess.  But, I’ll get to that – you know I never make this easy on the reader by revealing all right away!

Now, onto just some of the choices:

Early in the month, a loved-one was disappointed when I couldn’t dog-sit.  It’s a very nice little dog, I like her very much, and until I became too ill to give a dog what it needs, I’ve always had a dog. I miss having a dog! But, there was that key phrase “I became too ill to give a dog what it needs.”  In addition, my husband needed to be out of town for two days – yet another August choice and challenge that I’ll explain next – which meant the care of the dog would fall completely to me during that time.

I’d asked that the loved-one bring the dog over ahead of time to see if it got along with our cat. When we brought our cat home from a shelter in 2008, we’d accepted the paperwork which said he needs to be the only pet.  That was actually a plus since I was having trouble accepting that I couldn’t have a dog anymore; this way, I’d be prohibited from ignoring my own truth.  (Yes, I am an undisciplined person who frequently requires reality checks.)

Well, to make a long story short(er), there was a very good reason for the shelter to write down that the cat needs to be the only pet.  I could hardly bear to see our normally fearless cat in such utter terror for even the duration of that visit, let alone subject him to it for a week.  My loved-one was very disappointed and had to scramble to find someone else to take the dog for the week that they’d be on vacation.

I wanted very badly to be normal – to do this thing I was asked for someone I love so much.  I take disappointing people I love very, very hard.  I think most of us with chronic illnesses find that to be one of the hardest things with which to cope.

Another:

My husband was heading out of town to a wedding I had to choose not to attend.  Our nephew, my godson, in fact, whom I dearly love, was having his celebration about four hours from here.  My husband and I both knew that going would be a really bad choice for me.  We knew, in fact, that there really wasn’t a choice.  I can’t think of anything that I can do for four hours straight – not even sleep soundly – and that was just the first leg of the trip.  If the celebration had been right next door, I don’t know how I’d have managed it (the noise, the socializing, the sitting-up), but four hours away?  From my point of view, that’s about par with it being on the moon.

My husband booked a room in the hotel where the reception was held, but for me, that still doesn’t help much.  I don’t know about others, but I’m lucky if I can get some sleep in my own bed, much less a strange one.  No matter how tired I am, I never seem to be able to sleep (barring general anesthetic!) anywhere but home.  Now, before anyone suggests getting a sleeping pill for the night, let me say that sleeping pills and myoclonus, sleeping pills and any part of this disease, do not mix for me – at all.  It’s a really, really bad idea in my case and doesn’t even produce sleep.

It’s hard for people to understand how just sitting in a car can become an exercise in enduring torture. It’s hard for me to understand.  The usual response is along the lines of “You can put the seat back. We’ll stop as often as you need. You can rest all night in the hotel before you have to go back…”  Sound familiar?  I can’t blame others for having a hard time understanding what I can’t understand myself.

There’s pain, oh boy is there pain! There’s also a concerted effort by my immune system to go insane creating swollen, painful lymph nodes, those awful sores and other goodies.  Did you know that when the immune system goes into overdrive it’s making fevers and chemicals that, though miraculously designed to target invaders, also make us feel really sick? And the neurological glitches – over the top!  When asked if I need a restroom stop, I don’t know the answer because the nerve signals get messed up; so, I deliberately avoid fluids, skip my kidney medication, and hope I’ve gambled right or we’d never get there.

Then, of course, there is the price to be paid afterward – a price my husband pays, too.  Each time I’ve pushed myself to endure when I know it’s the wrong choice for my body; the disease has taken a more damaging hold.  So, my husband and I knew there really wasn’t a choice, though I felt I’d still made a very painful one – to leave myself out, again.

Since that weekend, the choices just kept on coming.  One of the monks at the monastery with which I am affiliated passed from this life, and in my heart, those men are my brothers – I needed to go there for a little while.  The emotional price of not going would be higher than the physical price if I went. With my husband’s help I was there for an hour.

Again with my husband’s help, I chose, 48 hours later, to push myself to keep my commitment to two hours a month of volunteer art instruction at a local gallery.   I chose to push some more to visit a sick friend afterward.

I chose to push to try to help someone who is thinking of suicide.  I may never know if I made any difference but not trying was unthinkable to me.

Yesterday, I chose to do what I knew was right, listen to my husband’s advice and let him deliver a grandson’s birthday present without me.

Yesterday, I chose to push in an effort to help my brother who is mentally ill and who depends upon me – a very upsetting situation had arisen.

And then I began to fall apart.

 

I mopped at my tears and painfully, slowly made my way out to the mailbox and back.  I sat down at the dining room table with the mail and lost it…just lost it…

 

Too much upset, too little care for my health, too much skewed perspective… Wait – what?

Yes, though it took something that came in the mail to put it all together that way.  A little booklet I thought I’d seen before – but which, if I had, I’d never really seen before – with a quote front and center on the first page.

“Pray, Hope and Don’t Worry.” Padre Pio

 

I dried my tears (again) and read it twice.  I began to see clearly that I had, indeed, done all that I could do in each choice I’d made. I’d made no decisions without prayer, thought, and counsel. I’d achieved the best balance I was capable of between what others needed and what I needed.  I’d put resources into the hands of those who needed them and I’d put the situation with my brother into the hands of his expert team (for whom I thank God!)  What I hadn’t done was balance it with what I now see to be truth.

It is time to begin again to look after my peace, my health.  It is time to surrender.  Not to give up, but to accept that after I have done what is in my limited power to do, it is time to surrender the outcome. 

 

Peace is mine again.

 

May it also be yours.

 

 

For those who pray, please pray
for the eternal rest of Father Daniel Homan, OSB and the needs of the community
of St. Benedict Monastery.

International Consensus Criteria Published for Myalgic Encephalomyelitis

Published by The Journal of Internal Medicine and reported by Kim McCleary (click on any part of this sentence.)

Though it is not the norm for me to involve this blog with research items, sometimes it’s important to help get information to those who might not otherwise find it.

As for my personal situation – I meet all criteria for this definition of ME. Though I can’t say I’m fond of the acronym, perhaps it will be a step forward.

May we all thrive, whatever the label.

Peace.

The Raft

Sunlight lures
Swimmer can’t resist
Faithful air raft
Brought to assist

Water so cool
Dark and deep
Depths unexplored
Soul half asleep

Distance swimmer
Far in the past
Still that inside
But strength won’t last

Sky to depths
Tiny lives abound
Swimmer on raft
Kicks around

Cool water soothes
Memories form
Of freedom in water
Swimmer’s old norm

Hands still on raft
Does the swimmer dare
Try to feel again
The water like air

Memory beckons
In depths dark and cold
Swimmer yearns and aches
To be once again bold

Hands release
Swimmer set free
Intense desire
Becomes reality

New definition of distance
Staying close without fail
Raft offers safety
For strength far too frail

Swimmer remembers
Soul now awakens
Glories in freedom
In boldness taken

Trembling arms
Blissful smile
Swimmer grabs hold
Finds rest for awhile

Kicking slowly to shore
Swimmer and raft as one
Distance is different now
But the prize is won.

Peace.

Unspeakable Exhaustion

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.

 Peace.

Troubled Times and Green Herons

After a very difficult few days of identifying a new health issue:

A Grace of Herons
At long last intensity lessens,
drawn to still water and silent recollections,
a plastic kayak sets me adrift,
through tangled days and thoughts to sift.

Skittering clouds in sun filled sky,
dazzling reflections stun the eye.
Two herons startle and hurry to hide.
Thick brush holds secrets deep inside.

Embracing silence for safety and life,
their young grow strong away from strife.
One comes out to watch me there.
From opposite sides we watch, we stare.

Understanding forms and passes between,
those who see and the one unseen.
I’ll guard the peace and cause no fear,
I have been blessed to find them here.

New life on the pond hidden in brush,
My soul fills with peace deep and lush.
Silence reigns blending with me.
That which was bound now is free.

Peace.

Fireflies, Coyote Arias and Friendships Adrift

Here I go again, trying to give voice to the struggle for balance amidst feelings that do not flatter me and gifts that bring me some level of peace.

There is no aspect of life which this disease will not alter – none. So, get used to it, right?

I try. I really do. Sometimes though, it’s easier than others to accept what comes. Oh, never forget please, I have said many times and am deeply aware that there are worse things! Far harder situations than my own! I have enough experience of life to have seen people suffer the unimaginable and enough knowledge of life to know there are worse things even than those. So though I may sound self-pitying, and I admit I am guilty of that, I will say that I think that knowing that there are far worse things still doesn’t make this thing an easy thing.

Now, forward with what brought me here today. (Did you think I’d never get to it? Yes, sometimes I wonder about that myself!)

I’ve been struggling a lot again lately with feeling marooned. In my spirituality, I am increasingly aware that I am intended to live differently and that it is both grace and blessing. That doesn’t make it easy – this feeling of being left behind.

As I stand here at the edge of my world, on my shore, friendships drift into the distance. Caught by other currents, destined for other ways of life and sailing for distant lands I can barely remember exist; they embrace lives I cannot have and for which I often ache. Ever greater expanses separate us and though their signal flares can sometimes yet be seen, I cannot quell all pangs of sadness as I stand with my feet planted in the shifting sands of my shore.

I look over my shoulder at this place where I stand, there is great beauty here and much to be discovered, but it comes at a price and I get so weary of paying. Sometimes supply ships come to my shore, my happiness to be among them mixed with challenge to my peace. They bring things I need and also tales of larger life that can be hard to hear, fanning the ember of longing into dangerous flame. One ship’s crew, a frequent visitor in the past, asked me how I manage here and when I said “I pray and God helps me” they left with laughter. Oh well, they asked and what was I to do, lie? I did not preach, only answered a simple truth.

Some of the ships arrive less and less frequently, more fulfilled at busier ports of call. Some, I suspect, will not return, and though difficult to accept – it may be for the best. I can do nothing to change it anyway.

As the ships make for the horizon, the pain grows too great and so I turn inland, away from the shore, to my familiar camp. I build my fire and take my place seeking calm as day turns to night. As dusk deepens to darkness the leaves whisper, and this place that graces me in my solitude awakens. Frogs begin to call and make me smile, a prelude to the magic for which I hardly dared hope; fireflies begin to dance, sparkles high and low, increasing in number with every passing second and then, like the breathtaking pause of an orchestra before the sublime, a moment given to one who thought herself left out, a sound unlike any other – a song beyond a song – a chorus whose meaning I need not understand in order to be awed and swept up, first one voice, then before it reaches its last note, many others – soaring, sweeping, lifting higher and higher from many directions – an aria of coyotes reminding me that there are finer things than those for which I ached.

I am experienced; I know the ache will come again and the ships will continue to sail to ever more distant ports.  I also know that there are arias for those who stay and listen.

Peace.

I’ve Heard

In recent times, I’ve found myself reflecting on the gift of hearing.  I don’t take that gift lightly.  Having grown up with a father who was profoundly hard of hearing due to a genetic, inheritable disease, and seen his struggle when good jobs and simple conversation were denied him, I do not take lightly the gift of hearing.

When my own hearing changed many years ago, tinnitus, I went through a time of fear – had I inherited the thing that caused my father so much anguish?  So, no, I don’t take being able to hear for granted.

A few days ago, when I began to reflect upon all that I have heard and all that I have gained from the gift, the list of what I cherish having heard overwhelmed me, especially late one night as I listened to the frogs sing me to sleep.  The next day, though, was a challenge to that reflection; it seemed every neighbor had machinery to run and I felt driven nearly mad with the noise.  Hearing?  Hmmm, I remember my mother-in-law quietly switching her hearing aid off when she’d had enough…

…and then I began to think once again about balance, the things I’ve wanted to hear, the things I haven’t.  Though very much distilled for simplicity, I offer this reflection:

I’ve Heard

I’ve heard,
Hard words and great words,
Sweet songs and bitter cries,
First breaths and last sighs.

I’ve heard,
Whispered fear and shouted triumph,
Shaking storm and quiet breeze,
Lawn mowers and shuffling leaves.

I’ve heard,
Chain saws and bird songs,
Words of wisdom and ceaseless chatter,
Endless worries that do not matter.

I’ve heard,
Precious gift of calling owl,
Assurance of a loved one’s breath,
Strength of faith in life not death.

I’ve heard,
Buzzing jewel of hummingbird,
Rattling glinting dragonfly wings,
Wordless answers seeking brings.

I’ve heard.

Peace.

An Unexpected Chair

Every time I think I will never be moved to write again, something ends up presenting itself, forming slowly into thoughts that nag until I let them out.  This time, it was a chair.

Those who’ve spent precious time giving me the gift of reading what I write may remember that I’ve written often about the place I live.  Thanks to great blessings and the decades of dedicated hard work of my husband, we moved ten years ago to a semi-rural area where we live down a dirt road in what many in the US would think a modest home (though to me it is a palace!) on what I like to think of as a three acre park.  Trees and wildlife abound, filling me with awe, with peace, and with many chuckles.  I never imagined I would get to live in a place like this. 

Please, make no mistake, I do not mean to boast!  Nothing I have came by my own efforts and I am deeply aware of how fortunate I am!  I merely wish to set the scene.

 

Toward the back of this land is a very deep pond, roughly three-quarters of an acre in surface, at a guess.  It is fed by deep, cold, spring seep water, home to many creatures and watering hole to many more.  Whoever built this place over 40 years ago and caused the pond to be dug gave us the gift of using the dug earth to create a large hill on the farthest bank.  They planted many trees in addition to one that was truly ancient even then.  Since all this was done decades before we came here, the trees are very large and of many varieties, the hill well protected against erosion and wild enough to lure much wildlife both large and small.  I am so thankful for the choices made by the person who built this place!

 My husband, in his unending generosity toward me, has put a small park bench on each side of the pond, including the top of the hill, so that when I make my way out there I have somewhere to rest.  I make good use of those benches.

So, now the scene is set and perhaps the reader is kind enough to see that I only mean to share, not to boast.

 

The weather growing slowly but steadily more pleasant after the long winter, I could not resist a sunny day and decided to make my way out to the pond, hoping to have enough strength once out there to get up the hill to my favorite of all benches, say my prayers, and rest with Him awhile – enjoying the new spring palette of nature and the delight of being near His creatures. 

Taking up my cane, I began my walk.  Mmmm, the sun on my face, the feel of the air, the sounds!  Oh, I am so grateful to be able to hear!  I can see a fruit tree in blossom and am tempted to go closer but my destination beckons.  I pass my husband’s newest plantings (Did you know there are kiwi that grow in cold places?  I didn’t until he found them.) I make my way to the stand of tall pines that stand to one side of the pond; passing them I come close to one of the benches and see the unexpected –

A simple white plastic chair sits on our neighbors’ side of the property line facing the pond.

What’s the big deal about that, you ask?  The habit of this neighbor is to leave the rear part of their property fairly wild, preserving a small, treed wetlands in the process.  They very rarely venture out there except to cut the part of the grass they keep low.  (We deeply appreciate their care of the natural world in this way – many people around here eschew keeping everything manicured, preferring the surprises of nature and are able to do so because of the rural nature of the area.)  Now, these neighbors are also busy people, running a business, involved with the community, their youngest child is still at home, sometimes they entertain family on the weekends – all good and necessary pursuits but busy, always busy.

So, there sits that empty white plastic chair near the property line, facing the pond.  It makes me pause and smile.  Just when I think that this disease has made me useless, I am faced (not for the first time) with evidence that we are all valuable to others in ways we may never see – today I see it in an empty white plastic chair.

You see, someone dragged that chair over there – from a fair distance away, in fact.  Someone needed some time alone, sitting where they could watch the pond, resting.  Someone needed the same thing that brought me out of the house.  How does that prove my value?  Ahh, if my husband and I, as caretakers of this land, had not chosen to keep it a place of serenity – it would not have been a gift to the person who sat in that chair.  That decision which I thought only affected us, was valuable to someone else and, by leaving that chair there, they gave the gift back to me.

It doesn’t take a three acre park – that flower pot in a window, the exhausted smile, who knows who will see it just when they needed it most? 

There is potential for everything about us, no matter how small, to have value – just because we don’t see it doesn’t mean it isn’t there.

And in the act of leaving that chair where it was, not only did they give us the gift of knowing we’d given someone something they needed, they caused me to think about the One Who is always with me, even when I am unaware – just by an unexpected chair.

 

Peace.

Yucky Stuff We Don’t Talk About

Yes, that’s what I wrote – yucky stuff.  We, who have learned the hard way that chronic illness means chronically keeping the details to oneself, even from uninterested doctors, are very unlikely to talk about the yucky stuff. I can’t believe, though, that I am the only one with this socially unacceptable disease who has some of these socially unacceptable symptoms.

I’m sure we’ve all read that frequent sore throats are a common symptom, well, for me it goes a step further into *gasp* yucky stuff.  Am I alone?  I doubt it.

I write today in the throes of an immune system that is really, really ticked off.  I expected to get slammed after the day of my son’s heart surgery; I even made sure I cleared any obligations until mid-May.  So, I’m no newbie to this stuff – but that doesn’t mean I’m taking it well.  And, as I endure the fanny-kicking that I can’t be surprised about, I find myself realizing that I’ve never told anyone but my husband about a particular yucky thing.

Enough with the lead-in, you say?  Okay, okay, here goes (I’m reminding myself here that few know my identity so being branded won’t be a big deal.)

The yucky stuff I refer to today are the magical, disappearing, reappearing deep-inside-the-mouth sores that come when every lymph node in my body is swollen and exquisitely painful and I can barely tolerate the pressure of my glasses near my aching ears.  Every tooth in my head hurts, too.  Yesterday, it went from being only on the right side to being on both to being gone for a few hours, then back again. 

Today I thought it was under control but I dared to shower (sitting down of course), wash my hair, dress AND straighten up my basement studio a little, pushing with all my will to do those things (yeah, I know, I should be smarter than that but I get pig-headed.)  Now, the ever-moody immune system has revved up the lymph nodes on the left side so badly that I feel beaten, my ear aches something fierce, and the sores are back again-running down the left side of the back of my tongue. My teeth hurt – all of them.    

In case you’re wondering, I see the dentist regularly, just recently in fact, and there is nothing wrong with my teeth.  Long, ever-so-long, experience has taught me that if I stay flat in bed long enough, it will all vanish again – sometimes in only a couple of hours, sometimes overnight, only to return when I’ve dared to be uppity again.  Licorice tea helps me, too, but only combined with becoming the Petrified Bedbound Woman.

Ever feel like the mole in one of those Whack-a-Mole games?

I know, I know, it’s gross to talk about sores.  That’s one reason I haven’t talked about it.  My husband knows because I’ve had to tell him why I can’t offer him a kiss when it’s happening or why he shouldn’t sip from my cup – but with anyone else, I just quietly take care of it, making sure to keep everyone safe while sparing them the yucky knowledge and sparing me their reactions. No one around me has ever caught anything but still, I am careful.

 I don’t know whether to thank Epstein-Barr, my documented initial attacker, or some nebulous other, but I do know that 20+ years later any doctor at any time can find swollen lymph nodes on me, even when I think all is quiet, I still can’t tolerate wearing a belt because my spleen hurts, and I never had any of these problems before that fateful long ago November.

 So, though the worst damage of the initial onslaught of this disease has been to my neurological system, the ol’ immune system took a hit, too, and isn’t shy about reminding me that things can get pretty yucky.

I guess for me, for right now, that Benedictine balance for which I am striving consists of the acceptance of even more rest and inactivity in a life that allows only an hour or two of activity at the best of times.  Since I have homework from the monastery that is due by May 15, I’d better get to balancing 😉

Peace.

Off-topic but dear to my heart.

I’m writing today simply to give thanks to God and to all who’ve prayed for my son.

My son underwent heart surgery yesterday and though it was more complex than anticipated, it was successful!

There is a small chance of recurrence, but if that doesn’t happen within six months, he is cured.

Deo gratias!

Peace.

By Whose Scale?

Though I don’t get out much, since my last post I’ve had a number of occasions to ask myself the title question – by whose scale shall I weigh my value?  By whose measure shall I live?  I think it’s an issue that everyone deals with, and in living with invisible chronic illness I have found it to be something that crops up with sometimes distressing intensity.

Sometimes I feel as though I am coming apart in twenty different directions as I struggle with internal turmoil over the expectations of others, my intense desire for understanding, my own ideas of how I should be living, and how I know I live best with the very real demands of this disease.  Weighing obligations against consequences, trying to figure out what my obligations to others truly are, oh how stressful! 

Stressful – that word alone is a clue.  When I take time to be silent – to turn off the TV, the radio, the MP3, the world, rest when I need to, open myself to awareness of God, do what tasks I can that do not bring on the clamoring whirlwind – then I feel peace inside.  Maybe that’s all the answer I need – to be tuned into the feeling of being in peaceful balance.  If I am feeling stress, something is not in balance; the scale is skewed instead of floating evenly.

Do you ever compare yourself to others in terms of what they can do, are doing, and what you can’t? I have those times and they are anything but balanced and peaceful.  Sometimes they come just from watching TV or reading a newspaper or a book – real or fictional characters and lives lived with obvious contributions to the world really get to me.  Sometimes I have to limit my contact with those who are out in the world.  Sometimes my inner torture is much more personal, my children’s in-laws so involved with their lives while I exist in some nebulous otherness, the knowledge that my husband deserves far more of a partner than I am, the wish for friendships I’ve no strength to nurture or the big, involved, extended families of others.

Recently, Br. Jerome Leo (see link section for Holy Rule daily meditation) reflected upon a much-loved mentor who said to him that there will always be people who do more than we do and people who do less.  Such a simple statement – such a balanced outlook.  It’s a simple fact, some do more, some do less, let’s go forward, no need to agonize over a simple fact… Wouldn’t that be wonderful?  To arrive in that place where I might no longer hurl myself against what my heart knows is true and right – in this instance, that I must take care of myself as well as I would take care of others in the same position.

I love how St. Benedict wrote for the least of us, how he over and over refers to the weak as well as the strong and insists upon consideration and balance – and he does it with absolutely no judgement.  As though he is saying,  “Some need more, some need less, that’s just how it is in this life, go forward with that in mind just never give up trying to be the best person you can be – wherever you fall in that range.”

Needing more, needing less – no condemnation because that would be as silly as saying that blue is superior to green, apples to oranges – they are what they are and each has beauty and value.

So, am I at that place where I no longer anguish over balancing myself on the scales of others?  No, I can’t say that I’m there yet, but I have come to a place of increasing honesty about my health versus what is asked of me.  I am increasingly okay with saying “In my desire to avoid talking too much about the disease I have, I am sometimes guilty of  not explaining enough to help others understand.  I am not going to be able to _______ because I _______” (am too ill to plan that far ahead, won’t be able to handle being upright that long, am likely take so long to recover strength that I won’t be able to…  some general phrasings I use, also letting them know how much I wish it were otherwise!)

One difference between people who are chronically ill and people who are healthy is that when the healthy people extend themselves to do something, they don’t have to give up everything else in their lives in order to do it.  Unfortunately, many of us do and that can be a very poor balance with consequences beyond ourselves.

 My failure lies not in being ill, but in failing to have the courage to weigh my decisions on my own scale, help others understand with a simple but honest explanation, and then letting it go.

Peace.

Out of the Ashes on Ash Wednesday

The past couple of months have, for me, been particularly difficult in terms of morale. The health of one of my children is in grave jeopardy; this disease has been putting me in bed far more than letting me out of it;  my immune system is really mad at me; and the preventive medication for my migraines seems to be losing effect – allowing for only a few hours recovery before the next attack begins as was the case before I began using it.

I am very ill, very isolated, and very much aware that nobody can fix it.

None of those things has changed, yet, today I have a sense of renewal. Isn’t it odd – on a day called Ash Wednesday, I come out of the ashes.

In my faith, today is a day for fasting, for beginning a more intense time of penance and introspection than usual, and, most vitally, for listening more closely and responding more deeply to God’s invitation to come closer.

Most people I know regard Lent as a somber time, I always have. Many Christian churches avoid outward appearances of festivity in decoration and in music. Many Catholics will, today, be marked with ash on the forehead (made from burnt palm fronds blessed and given out last year on Palm Sunday.) Signs for fish-fry dinners appear as Christians of many denominations refrain from eating meat today and on Fridays until Easter. Days of fasting, eating only one modest meal (for those of age and in good health) are part of being Catholic during this season. “What are you giving up for Lent?” is a common question between friends and family – we do try to support each other and we are also inspired by each other in sharing our decisions.

Pretty somber stuff, eh?

And yet here I sit, in a bright pink blouse, because I am quietly happy about it all.

Goofy as it may sound to some, I have been mired in upset but find myself free today because what I go through is useful, whether I can see it or not. I feel free today and connected too, knowing that countless other Christians are joined with me in accepting the invitation to come closer.

Yep, I am definitely still physically miserable. Still have my share of stressful situations with which to deal. Still no fix for this disease. Still going to meet others who roll their eyes upon hearing my diagnosis. Still going to have another migraine. Still have to struggle for strength for the least of tasks. Still going to have times of terrible upset for what I want to do and can’t. Still going to be looking out the window while others live their lives.  Still going to dissolve in tears sometimes when I feel I am at the bottom of the well – again.

I suppose there will still be times, too,  when I long for useful work – though I know perfectly well that prayer is of the ultimate usefulness.

And it’s all still useful. Even when I can’t see it. Even when I’m dry as a bone in spirit and cry in frustration “I need You, I can’t do this without You!”  It’s still true.  All useful.

The weather is gray. I am not.

Peace.

God, make us more like Jesus.
Help us to bear difficulty, pain,
disappointment and sorrow
knowing that in your perfect working and design
you can use such bitter experiences
to shape our characters
and make us more like Christ.
We look with hope for that day
when we shall be wholly like Christ,
because we shall see him
as he is. Amen.

– St. Ignatius of Antioch

English version of Japanese news segment on ME/CFS

I was about to try to write an entry about my thoughts on not having to prove myself to anyone. At the same time, I was going to put the CBS footage shown on my previous post into a page which would keep it obvious and accessible.

In the process of double-checking my YouTube link, I came across this video. PLEASE, if you are newly diagnosed do NOT fear you’re going to end up like the woman featured here! I post it for the use of all of us in informing others of how seriously disabling this disease can be – not will be for everyone.

Those of us, myself included, with the form of the disease that grows progressively worse over time seem to be a minority. Remember that and do not lose hope!

I post this then, for your use when it’s necessary to help others understand that we who are diagnosed with this disease must take it seriously and are made terribly ill by it. Hopefully, a day will come when we need no longer dread having to name our diagnosis. Having lost a brother to AIDS, I know the derision of others could be far, far worse than even we experience. Still, it can be hard to bear, and I hope that posting this video helps.

I post it also for those who have gotten better, and who think that if the rest of us only tried ______ we would be well, too. Please, remember to be kind to those of us who would (and have) tried countless things to be well. For some of us, it simply hasn’t happened.

And, lastly but not without great respect, I post it for the woman portrayed, who is doing what comes her way to do – who has not given up.

Thanks – and –
Peace.

 

According to the YouTube site, this news segment aired on Feb. 10, 2011

CBS Evening News Coverage

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:***

http://www.youtube.com/watch?v=V1VJfjKHYco

The original CBS link is:

http://www.cbsnews.com/stories/2011/02/23/eveningnews/main20035610.shtml?tag=cbsnewsTwoColUpperPromoArea

CBS video only link:

http://www.cbsnews.com/video/watch/?id=7357544n&tag=related;photovideo

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!

Peace.

“How are you?” and Just Handling It

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?”

 

 Peace.