Posts Tagged ‘pain’

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.







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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)










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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.


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.

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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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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.


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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.


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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 😉


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