Posts Tagged ‘anguish’

You might think that as I approach yet another anniversary with this disease and that since I’m no spring chicken either (I’d have to make the Guinness Book of Records to still call myself “middle-aged” though I’m sticking with the label anyway) I’d be smarter.

Yes, you might think that – but you’d be wrong.

I’ve written here and spoken many times to others about making the tough choices to live well with chronic illness. Hang on a sec, what’s that in the mirror? Whew, I thought my forehead had “doofus” written on it! I’m pretty sure that I deserve the label even if it’s not showing up in the mirror at the moment.

It took until very early this morning to make me see more clearly that I cannot live well with this disease, be true to my beliefs and still drive myself crazy when what I usually view as a choice or decision comes into play. Okay, I know, I’m rambling again – here we go…

The day before yesterday was pretty rough in terms of strength. I had none. So yesterday when I woke feeling even worse, I wasn’t too surprised to end up in the stinky embrace of the Migraine Monster. September was a relatively easy month in terms of migraines so I tried hard to just go with it and not think too much about the loss of what little up-time I get in a day.

I do have at least some appreciation for how fortunate I am even in the midst of the monster attacks.  I count my many blessings backwards and forwards and they are breathtaking in their expanse.  You might think that would make me humble and again – you’d be wrong.

In the grip of the stinky Migraine Monster’s embrace, I realized that it was Tuesday and that meant I’d probably have to miss the Scripture study group at church that I’ve been going to.  It meets once a week in the evening for two months at a time and then is off for two months.  Take note, please, of that word in italics “probably.”

At the best of times the physical toll of going to that group is almost more than I can bear.  Yet there I was, wondering just where to place the drop cloth to catch the mess when my head would finally explode through my eyeball (gross, eh?) and I’m thinking I would PROBABLY  have to miss it?  Granted, I have the blessing of triptans to abort the attacks but they work only about 50% of the time if I am very careful.  Going out to a meeting that involves sitting  upright in a sadistically designed metal folding chair for an hour and a half is not being very careful – not ever  – let alone on a migraine day!   I know that.  I knew that.  Yet I still felt I had to make a choice.  Until the very moment it would have been time to leave I still thought “maybe I should go – it’s not that bad right now.”

Credit my husband with common sense, not me.  I don’t want to think about how many times I asked his opinion before I let him go without me.

Credit God and knowing I’d just posted here that I wanted to be accountable for better integrating my spiritual life with this disease for doing what I could do; praying Evening Prayer (aka Vespers) instead.

And then the kidney stones began to move.

Yep, this disease will truly mess with every single system.  Neurological, endocrine, immune and whatever else I can’t think of at the moment.  Lately, it’s been messing with them all at one time but those stones really topped it off.

I was going to go that meeting despite a migraine attack.  Unbeknownst to me, the chills I’d developed in the later hours were the foreshadowing of kidney stones, but no matter what the cause, I was going to go to that meeting because I had a choice!  I had to make a decision!

At 3:00am as the kidney stones became only occasional zings, I finally understood the only decision I really have in life with this disease and I committed to it long ago.  I understood it thanks to the wisdom of a priest who recently submitted to being pummeled by my Niagara Falls of words and anguish about “am I trying hard enough.”   I heard him at the time but it took new life in the wee hours after a really hard day.

“Love your neighbor as you love yourself.”

It’s a balance – again with the balance!

I don’t actually have choices and decisions in these matters beyond that.   All these years I’ve sought  permission to see to what I need. Yet all that time I not only had permission, I was actually commanded to love myself, too.  I would not do to a neighbor what I do to myself.  Where is the balance in that?

There was no decision to be made yesterday, no choice.   Only that sweet voice of invitation saying I am loved and telling me to extend that love to everyone else;  including myself.  I have been making it all so complicated and so muddled.

It is all so simple.





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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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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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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.


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