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Posts Tagged ‘ME’

Being where I am.

 
Four simple words, yet I am coming to understand they are vital and far more complex than I can yet fully grasp.

 
Being where I am.

 
Being attentive to this moment, fully.   Not dividing my attention when someone is speaking to me. Instead, listening in the deepest sense; reigning in wandering thoughts, irritations. Stopping what I am doing to focus. God created that person – more than enough reason to stop, to respect, to remember.

 
Being where I am.

 
Looking out my window from my bed what earthly thing should I yearn for? I am warm, I am safe, and other lives are other lives, not mine. This moment is given to me; it can be mindless or mindful. It can be drifting in much-needed rest and gratitude that I can have it. It can be an offering. It can be a simple enjoyment of a puzzle, a book, a view. Those are offerings, too, if I am mindful – if I am truly where I am.

 
The indescribable totality of this disease is often harder than I think I can stand and I can only pray “Either cure me or help me cope!” And then I do cope, but not by my own strength.

 
Being where I am.

 

A key to contentment, to acceptance, to
Peace.

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The things that trigger the need to write always surprise me.  This time it was a simple question asked by my friend and oblate mentor that set me to pondering for days.  “How are you doing?”  I know, I’ve written before about answering the “How are you?” question but this was different for me; I’m hoping that by writing today I’ll figure out why and maybe even be able to answer it.

First, a little background.  Since I am mostly homebound, I thought at first that it might be impossible for me to be accepted as a Benedictine Oblate candidate.  But God does indeed use all things and inspired the Oblate Director of the monastery with which I am now affiliated to offer me the opportunity to study at home.  Part of his decision included asking a particular oblate of the monastery to act as my mentor. Their actions speak strong lessons regarding what it means to invite Christ more deeply into one’s life via the Rule of St. Benedict.  She and I have met only twice in person but, I am honored and happy to say, have become friends as well as fellow travelers on the Benedictine path.

So, why did the caring inquiry of a friend who even remarked that she didn’t want to intrude into my privacy (something she did not in any way do!) render me mute for so long?

“How are you doing?”  “Better than most and not as good as some” would be the glib answer – yet it’s also true.  Barring the desires of some in power to dismantle my husband’s pension plan, our lifestyle is fairly secure which is something most of the world would give much to be able to say.  As hard as this disease is, there are far harder, so I am once again fortunate.  We have so far been able to afford our medicines; again, almost embarrassingly fortunate.  Our family is safe and all one has to do is look at a headline to know how blessed we are in that!  The wealth I enjoy in these things and others is indescribable, yet I felt completely unable to answer that question.

“How are you doing?”  Well, a medicine I had hope for doesn’t seem to agree with me, adding another to a long list, so I’m still struggling with acceptance.

“How are you doing?”  I’m feeling a bit lost, very sick, and trying to cover it up so others won’t leave me out of things more than I already am, so I am still struggling with acceptance.

“How are you doing?”  It hurts terribly when  others know more about my children and grandchildren than I do because of the isolation this disease imposes, so I am still struggling with acceptance.

“How are you doing?”  I feel overwhelmed by the least things that others do with such astonishing ease, so I am still struggling with acceptance.

“How are you doing?”  I get scared about the future even as I profess my trust in God, so I am still struggling with acceptance.

“How are you doing?”  I feel I’m handling it one moment and crash the next into a bewildered mess of sickness and pain, so I am still struggling  with acceptance.

“How are you doing?”  I sometimes want to scream when someone tells me about ordinary things they do and which I know I will never do, so I am still struggling with acceptance.

“How are you doing?”  I fight an unbecoming resentment when there are breakthroughs for other diseases and none for this one, so I am still struggling with acceptance.

“How are you doing?”  I am both irritated with myself  and deeply ashamed for the whole list above and for all the things I haven’t listed, knowing how absolutely blessed I am in all that truly matters, so I am still struggling with – myself.

Well, it seems there we have it , the voice unmuted, the answer I needed for myself.   “How are you doing?”  I’m struggling with acceptance.  I’m struggling.  But in those words “I’m struggling” there is life, isn’t there?   I’m a very poor example of a Benedictine of any stripe, but I’m struggling.  Time to email my friend.  

 

Peace.

 

 

 

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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.

 

Peace.

 

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Although I seldom use this blog to post resources, there being sites that do that so much more thoroughly than I could, I thought I should offer these especially as the format is video and some of us have difficulty with too much text on a screen.

I’m adding them to the permanent links on the right of this page.  If anyone finds that links I’ve put in this blog cease to work or are somehow inappropriate, please leave me a message so I can review the link in question. 

I know that there is a great deal of controversy, upset, even fury in the patient (what a word!) community about this or that doctor, this or that organization but this blog will not be used to further that; I merely offer a resource.  I, too, have experienced the fear, the frustration, the upset, the longing for treatment that would give me a normal life.  I have experienced humiliation at the hands of those sworn to be compassionate healers.  I, too, detest the name which trivializes that with which I must live.  I get it.  I just won’t argue about it.

For the newly diagnosed who may be reading this, please know that odds are with you – you are very likely to improve as time goes forward!   Never let me, anyone else, or any resource overcome hope!  Life can be very, very sweet even when it takes a sharp turn into uncharted territory.

I am not affiliated with any group regarding this disease, nor do I offer advice about what will or won’t work for you.   I wish I had the answers.   My personal approach is to stay informed but keep my focus on pursuing my life as it is now.  These links are offered in that spirit.

Here are the new links:

http://www.youtube.com/user/SolveCFS

http://www.youtube.com/watch?v=Riybtt6SChU&list=FLzrFQHNiCc_6AMpw_GpWZOA&index=5&feature=plpp_video

Peace.

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Lately I’ve been getting slammed more than usual by this disease.  I’m fairly sure there’s no pain in my eyelashes 😉 but the level of pain, exhaustion, immune system uproar, migraine attacks and other neurological nasties have left me breathless – oh, wait, that’s the asthma kicking in.

 

I’d say I don’t mean to complain, but I suppose that’s not entirely true, I’m SICK of this!

 

Whew, that felt good and yes, I see the pun 🙂

 

I’ve smiled my way through several important events that brought me great joy even as I knew I was getting much worse.  Balance, it always comes back to that.  Now it is time to begin to tip the scale back to where I do best – living each moment in quiet spontaneity.   Healthy or not, it only makes sense; we are not promised a next moment and, while reflection on the past can be fruitful, moments in the past are gone – we have only this moment.

 

Okay, I’ll admit, that even at the least demanding of times, it’s not completely possible to be without thought of the next moment, the chore that can’t wait any longer, the appointment that must be made and kept, the commitment to my spirituality that strengthens me in every way, but the more I can build that quiet spontaneity into my life, the better I do.  Yes, it takes a conscious effort to choose – to build – that peaceful place, to recognize an opportunity; even the busiest lives have them.

 

Yesterday was one of those precious spontaneous days. 

 

My husband asked me what I was going to do with my day.  I smiled and recited one of our family jokes, “I don’t make plans that far in advance.”  I asked him what he was going to do and he said he might cut the grass.  Now, the last time he cut the grass I’d compromised but this time I knew I desperately needed the quiet and that lawnmower makes me feel driven as I try to escape the noise and the allergens.  We have a small parcel of land here, so cutting the grass takes several hours on a riding mower.

 

So, I did the unthinkable; I asked for what I desperately needed.

 

Luckily, my always-has-to-be-busy husband is also very good to me so he agreed to find something else to do and joked about someone calling the Grass Police.  (We live in a semi-rural area, I’m not sure anyone would do anything about it if we let the whole place go wild.)  So I looked forward to my quiet and a day with absolutely no obligation other than the times of prayer in which I find peace and solace. (See the Divine Office link to the right of this page if curious.)

 

After a morning spent “going slow” as I think of it, I was finally dressed and ready to spend some time on the screened-in porch.  I set my favorite pillow on the lounge chair and stretched out; I read for a time, I listened to the birds and thought about what I’d read.   Just being able to do that – retain what I’d read long enough to think about it – was huge!

 

When 3pm came, I went upstairs to pray Midafternoon Prayer as is my custom, and came back to the lounge chair.  Then the weeds began to call.

 

They did.  Honest!

 

Several years ago, my husband built a two-tiered flowerbed just outside the screened porch.  Don’t ever let anyone tell you that you can contain the growth of mint if you plant it inside a pot in your garden!  I think I’ll be pulling it out for the rest of my life and much as I like mint, well, email me if you ever need some 😉 

 

So, the mint and friends were calling and I, in that moment, felt I could clear a little section.  With my cane for balance and my trusty trowel, out I went.  After a couple of minutes, the lessons began to form.

 

I set my sights on clearing every weed from the midst of an Autumn Joy sedum that has gotten quite full and lovely.  Just that spot, I thought, let me get that one spot completely cleared.  I began with a few inches leading up to the sedum when the first lesson came.

 

My husband and I had done this already earlier this spring.

 

What we had not done was put something in the place of the weeds.  Pull something unwanted out, the careful gardener puts in something that is wanted – lest the weeds grow back.  Clear a space within myself, something better needs to take its place lest I end up back where I began or worse, grow an even bigger crop of weeds.

 

I moved forward, still determined to perfect that one little area.   I began to work on my lovely plant, carefully separating the sedum stalks to follow the weed to the roots when the second lesson came.

 

No matter how carefully I pull out the roots, I can never get every last little strand; the weed will grow back eventually without vigilance.  What progress I make must be carefully watched and nurtured.

 

I moved to the other side of the plant, having cleared the front and looked back.  Wait just a minute!  I just cleared that!  I’d swear there wasn’t a single weed left in the front half when I moved to the back!  But there they were, waving merrily in the wind, weeds I hadn’t seen though I’d thought I looked so carefully.  I’d felt pretty proud of myself for my thoroughness and yet I completely overlooked these taunting flags!  Therein lay the third lesson of the weeds. 

 

The weeds in me require my vigilance, my effort, my patience, and my perseverance but I will never clear my garden of weeds.  There is only one Gardener who is able to see and completely root out each weed and it isn’t me! 

 

Peace.

 

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A great saint said God could be found amidst the pots and pans.  I thought I understood what she meant until I realized I am the pot.

 

The dinner fails.

The pot sits too long alone.

Unscrubbed, scorched,

Ruined.

 

Hands take it up,

Fill it with warming water,

Soothing soap,

Set it aside to soak.

 

Time passes.

 

The pot poured out,

Residue drains,

Hands begin to scrub,

Harsh steel wool.

 

Time passes.

 

Water rinses,

Harsh splinters slide away.

Spots fewer but

Stubborn, stuck.

 

Time passes.

 

Hands determined,

Pot can be cleansed,

Useful again,

No matter what.

 

Time passes.

 

Soothing soak,

Bliss of being still,

Soap and water working,

Pot unaware.

 

Time passes.

 

Taken up again,

New water, same soap,

Same hands.

Steel wool only on spots.

 

Time passes.

 

Pot has shiny places now.

Rinse and rinse again.

Spots grow smaller,

These most stubborn.

 

Time passes.

 

Hands keep working,

Scrub, rinse, soak.

Pot will be useable,

Scrubber knows.

 

Time passes.

 

Steel wool put aside,

Shine never marred.

Some spots remain,

Accepted for now.

 

Time is future.

 

Rinsed, dried, back with others.

Dinners will be new,

Pot used again,

Hands ready to cleanse.

 

 

“Let us fall into the hands of the Lord

and not into the hands of men,

For equal to his majesty

is the mercy that he shows.”

Sirach 2:18 NAB

Peace.

 

 

 

 

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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.

 

 

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