Quiet Roots, Hidden Life

Quiet roots, hidden life

 Peace.

The Colors of Adapting

Once again time and circumstance have slowly come together and insisted on words.  I know, I’ve surely spoken and written enough words for several lifetimes already, but here I go again.

 

It seems to me that all living things adapt constantly or don’t survive.  Living things must adapt to weather, to availability of food, to good things, to bad things, to innumerable things.

 

We who are chronically ill are certainly not unusual in that respect.  What may be unusual about us is that we agonize, beat ourselves up, and often tend to believe that we are somehow guilty, have some sort of character flaw, or have given up if we adapt to the changes our health brings before us.

 

Okay, I’ll stop using the royal “we” and refer to myself – it’s me, I admit it – I’m guilty of all of the above and then some; every single day.  But, after 21+ years of this disease, I’ve been confronted in a new way with a basic truth.

 

How well, and in what ways, I adapt affects me, people close to me and even total strangers.

 

Now, as I said, I’ve been living with this thing for 21+ years.  I’ve certainly adapted in many ways.  Some are obvious; at the best of times I use a shower stool, a cane, and if I need to go to a big place, a wheelchair.  None of those adaptations were easy when I first made them.  None of them are easy today – especially that wheelchair.

 

I’ve adapted in ways that are not obvious, too.  Not all of them are good.

 

Because I’ve had great difficulty standing unsupported for more than a very short time since the onset of this disease, I learned of necessity to adapt – hence the shower stool, cane and wheelchair.  Sometimes I still went out to small places on my own, our little library or drug store, but when confronted with a line (queue), I became, then and now, quickly desperate to sit and have left the merchandise behind rather than sit on the floor drawing attention or risk meeting the tiles in an even more attention-getting way.  Leaning hard on my cane, angled so I could rest back against it, was helpful only some of the time and never without a dramatic reduction in stamina.  I gave myself credit for strength of will, though, oh boy – am I tough! And wasn’t that the most important thing – toughing it out?  Applause, please, for the superwoman among us!

 

In the false pride of my so-called toughness, in the self-flagellation that did not come from truth, balance or any good thing, I did everyone a disservice, even strangers.  I know this because of what happened when I began to see what I must do.

 

About a month ago, I was forced to face facts.  I can’t do it.  I can’t go even to a small place and not have a place to sit down.  It’s not a case of wanting to sit – it’s need, and need it right now! I can no longer get away with leaning over a shopping cart, with self-talk to hold on for just another minute.   I can walk – some of the time – what I can’t do is predict or plan. My ability to stand can change in the blink of an eye.  Yet I want and need to walk when I can and I want freedom to do what I can on my own.  I am, after all, tough!  I am tough enough to accept reality…tough enough to adapt.

 

And so I obtained what will help me when the cane is not enough, the wheelchair is too much and what has, in turn, further opened my eyes, thanks to a stranger’s reaction.

 

More important than the “what” is the opening of my eyes.  A stranger saw me using what I am calling The Gizmo.  She gently asked if I get tired.  I got nervous that she was going to ask more but when I said yes, she began to tell me how much she wishes her friend would use one, how much easier life would be for her friend and for all those who take care of her.  She wasn’t asking in order to pry, she needed to talk about her friend – and I needed to hear!

 

Looking at The Gizmo rather longingly, she went on to say that her friend simply refuses to use “one of those.”  Anyone watching this woman would have been able to see how she ached for her friend – for the loss of freedom her friend is enduring and for those who take on the extra duties she cannot perform because “she won’t use one of those.”  Perhaps she’ll talk to her friend about it again, having heard me say that it has already brought back freedom I thought was gone forever.  Perhaps my public use of it has helped someone other than myself and my husband.  What a great gift to me, that thought!

 

We affect others, all of us, whether we are aware of it or not – whether it is seeing or simply allowing ourselves to be seen – adapting, living, continuing.  We aren’t just adapting for ourselves!

 

When I acquired The Gizmo, I was unhappy at its original name, bright color, and the prominent sticker that could not be removed and proclaimed me “invalid.”  I am neither invalid nor in-valid.  I renamed it and covered that sticker with some that reflect things I enjoy.  When I took the deep breath of courage and used it the world did not stop, staring and pointing, and I was able to enjoy a small outing as I have not done in many years.

 

And on top of it all, thanks to the blessing of a stranger’s wisdom, I have seen another way to be useful.

 

And so I present to you The Gizmo, personal helper, instrument of learning, and one of the colors of adapting.

Gaining freedom - gaining wisdom

 

Peace.

 

 

Happy New Year!

May your new year and all your days be blessed!

Peace.

Doubting Usefulness?

Recently, I read something which moved me so deeply that I contacted the author and asked permission to post it here.  Receiving a resounding “Yes!… for His glory!” I post the following – may it inspire all who struggle.

Peace.

 

From her book, Wow God by Sister Francis Clare, S.S.N.D. :

 

I will open for you every door I want

and close those I do not want . . .

 

When you are beset by doubts, know that

I am still here. These plans are My plans,

not yours. You’ve asked to be used by

Me and I’ve told you that I will use you.

The plan is Mine to work out. I’ve not

given the plan to you.

 

I’m only asking you to be My tool. The

hammer does not know what the

carpenter is doing. It only follows the

hand of the carpenter. I will pick you up

and I will lay you down. When I need

you I will use you. I know what I am

doing. I know what I am building. All I

ask is that you be on hand when I need

you.

 

Because I have called you a hammer, do

not think that I despise you. A carpenter

loves his tools and the more he loves

them, the better he handles them and the

better work they will do for him.

 

I have many tools. They are arrayed

before Me and I pick the one I need. Be

content to lie still if I do not need you,

for I know where you are and I will pick

you up when I need you.

 

 

Cats, Chickens, Fish and Being Who I Am

I’ve had snippets of this post brewing in the back of my mind since last fall.  Did I ever admit to procrastination?

It wasn’t until today, after having taken part of the banister off the wall yesterday in an attempt to control a fall during a period of blacking out (POTS – a kind of orthostatic intolerance, and a partial branch bundle block along with other non-life-threatening electrical glitches) that I saw how to better (I hope) write on this topic.

I again caution:  If you are newly diagnosed or if you do not have symptoms mentioned here, please do not assume you’re going to end up like me!  There is every reason for anyone reading this to hope for improvement!

Now, preface over (I can just hear the sighs of relief), onto the topic.

My husband and I often share grins over the behavior of our cat; especially when he’s acting the mighty lion over something silly.  Sometimes, though, it’s not so silly.  He’s an indoor cat but has access to our back porch where, three times now, he has managed to kill a vole seeking shelter when the weather turns to winter.  He’s thrown himself at screens wanting to get at birds.  My husband and I turn to each other, seeing our fuzzy companion as the skilled predator he was designed to be, and say “We can’t blame him for being what he is.”

Living in this semi-rural area, we are able to keep chickens.  They provide us with fresh eggs, much amusement and will eat out of our hands.  They are also capable of killing a newcomer to their roost.  “We can’t blame them for being what they are.”

(The fish mentioned in the title aren’t forgotten, they’re just waiting their turn.)

So, how does this extend to me? I cannot blame myself for being human. I cannot blame myself for being ill.  In those respects, I cannot blame myself for being what I am.  I can, however, think hard and make efforts to do better; yesterday and the days which preceded it have proved to me that I have much work to do in meeting that responsibility.  It took a literal falling down on the job to make me see that I’d been figuratively falling down on the job for several weeks – just when I’d thought I was worthy of superhero status.

We’ve had a home repair job going on here for several weeks.  It became one of those odysseys that begin with one minor repair revealing a bigger problem revealing a larger one yet.  That little ten minute repair revealed a need to dismantle and rebuild our bathroom.   Remembering our youthful days of working side by side taking on any job that needed doing, knowing how well we work together and how expensive it would be to hire someone, my husband and I agreed that we could do the work ourselves.

Wait, don’t laugh quite yet, here’s the biggest “DUH!” moment of all - I shopped for materials with him while sitting in my wheelchair!  “Yes, Dear, I will help all I can” said the woman who couldn’t even stand up and walk through the store.  Reality check on aisle 9, please!

I know, I know, 21 years with this disease…one would think I’d have more sense!  It’s a good thing I never said I was perfect.  Well, I never said it out loud, anyway.

By my actions over the last two weeks, I was saying it, though.  Though my husband actually did need my help sometimes, I began to feel as though nothing could be done without me in the middle of it.  Somehow, with me there, the result would be better.  Since I couldn’t stand, I worked on the floor, since I couldn’t stay on my knees, I sat, when I couldn’t sit, I lay on my side to set tiles or mush in grout (“mush” being a technical grouting term.)  When an intricate piece of tile setting was called for, I completed it even though dizzy and nauseated. I resolved that I was done for good with what I could do on the project.  I knew I was so deeply down the well that I’d be lucky to see daylight again.

The next day, yesterday, I deliberately put on a nightgown after showering to add insurance that I’d do what I knew I must – rest and stay out of things.  I announced my intent.  I had my husband’s understanding.   But there was just one more thing that only I could make better – yep, you read it right, complete arrogance there and could not leave well-enough alone; a lesson I should have learned decades ago since I’ve wrestled with it all my life.  So, I decided I could do just that one thing and began to work on it, nightgown and all.  Then it happened, “I’m going out” I remember saying and stumbling with jigsaw vision out of the bathroom to the hall (another poor choice, the top of the stairs are right there.)  Having dealt with this kind of thing many times alone, I knew I had to control the fall and as my legs went, I grabbed the banister and managed to end up safely on the hall floor.

The details of the project are endless; in fact, as I type this my husband is painting over the patchwork we had to do and preparing to reinstall towel bars.  The difference today is I am resting and reflecting on being what I am; a woman in her 50’s who has been seriously ill for 21 years and a monastic soul who has a long way to go.  A woman who remembers what it was like to be physically strong, but who has lived long enough to know there are far more important things than the physical.  A woman who has been especially foolish lately and made herself so sick she can’t make any choices at all except to share her foolishness in the hope of helping others be wiser than she.

Oh, and that one little thing that only I could do?  I messed it up and my husband had even more work today to correct what I’d done in arrogant stubbornness.

Wait, I forgot the fish you say?  Well, perhaps you didn’t say but I have a little more typing in me before I go.   In the place where I spend most of my time, I have the blessing of an aquarium where five beautiful fantail goldfish reside.  I can see them now, contained in an unchanging place, sometimes coming together to touch, sometimes swimming or drifting alone.  Food appears and they seem joyful.  Food eaten, peacefulness returns.  They never seek to be somewhere or something they cannot be.  There is no discontent, no unrest.  In that quiet blue place there is only –

Peace.

They’re Out There…

…the doctors who care, I mean.

My last post was done the day before I was to meet, for the first time, with a neurologist my primary care doctor recommended.  I met with her yesterday.   Up until the night before the appointment I’d have told anyone who asked that I felt surprisingly peaceful about the whole thing, even though I’d actively avoided further contact with a neurologist for about 7 or 8 years.  My primary care doctor was comfortable continuing the treatments for my neuro symptoms but every now and then would mention that he knew of a neurologist with whom he was sure I’d feel comfortable.

There came a time when I had to accept that my stubbornness was born of fear – which was born of the experiences of the past – and that continuing to let the fear make the decisions was both foolish and even made me guilty of prejudice, painting all neurologists with one brush.

I need to have a neurologist on my medical team and I needed to adjust my thinking – if the doc I saw turned out to be someone with whom I could not work, I have the power to find another doc.  It’s that simple.   If  the doc behaved as though my overall diagnosis is a religion – something to be believed in or not – then allowing that person to crush my world and stop me from seeking out the care I need would be foolish.  I could move on.  So, all this in mind, and having looked up the recommended neuro on the net and seeing good patient reviews, I felt hopeful and peaceful about my decision to go.

Until the night before when I began to get nervous about what might happen.  I imagined the visit being as it was in the past with the best of the neuros I’d seen who, even though he helped me with migraine and myoclonus, had an attitude of making fun of me so apparent that it shocked even my usually unruffleable husband.  The neuro scoffed even as we watched him make notes of abnormalities for his medical student to take down.  I stayed under that neuro’s care for some years as I did need what help he offered but I dreaded each contact.  To say more would be even less Benedictine than I’m already guilty of so I’ll let that story end here – I say that much only to contrast what a few years can change.

It’s the morning of the appointment with the “new” neurologist.  I’d planned carefully, washing my hair the day before so as not to use precious strength – we faced an hour’s drive to get there (to me, that’s like a trip to the moon.)  I couldn’t eat, I had to take two doses of Immodium to leave the house (get the idea that I was nervous?) and off we went with me clinging to positive thoughts and prayers with all my might.  In my purse was my little calendar of migraine attacks and the printout of the article in the Journal of Internal Medicine (link at right.)

My final prayer just before I was called in was the same one I prayed before I entered the courtroom for my Social Security hearing all those years ago, “It’s all in your hands, whatever you will” and with that, I let it go and in I went with my husband.

What a change from my last experience!  A young, vibrant doctor in ordinary clothes who never once made me feel I had to prove anything I said!  She asked questions, she listened to the answers without once making me feel rushed or cornered, even apologized for not making eye contact while she entered data into the computer, did a few of the usual neuro tests, and expressed views that meshed perfectly with my own attitudes!  I still can’t get over the difference!  See all those exclamation points?

At the end of this very productive visit, I asked her if she’d be willing to let me leave a copy of an article and began to get it from my purse.  Before I’d even gotten it out she said “Yes, please do, I’m always happy to read what a patient brings in.”  When I handed it to her she saw immediately that it was from the Journal of Internal Medicine and recent and she really perked up saying “Oh, this is from Internal Med; my husband is an internist and will be interested too, I haven’t caught up on my October journals yet.”

I think she’s actually going to read it and pass it on.

After I go back next week to have an EEG (they have the ability to do it right there and she’ll read it before I leave!) just to update since it’s been so long, I’ll see her every six months unless something changes.  She invited me to feel free to call in if I’m having a bad time of it, even if it’s that I need a steroid injection to break a migraine that lasts more than a day (I’ve toughed those out for a week at a time sometimes.)

I’ve got a neurologist on my team I feel good about – perhaps the passage of time and the efforts of advocacy really have brought some doctors to a higher state of acceptance about the reality of this disease.  Wow.

Deo gratias!

Peace.

 

 

 

 

 

Link to Journal of Internal Medicine Full Article

As I prepare to meet with a new (to me) neurologist tomorrow, I have found and am printing a copy of the full Journal of Internal Medicine article titled “Myalgic encephalomyelitis: International Consensus Criteria” and am listing the link below.

This is not an outline or summary, but rather the full article which appeared in the Journal.  I hope others will find it helpful.

As long as the link remains active, I will keep it listed to the side of this blog, too.  Please do let me know if you click on it and it doesn’t take you to the article.

http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/pdf

Oh, and wish me luck – or better yet offer a prayer – that things go well tomorrow.

Peace.

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.