Quiet roots, hidden life

 Peace.

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.

Peace.

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.

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.

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.

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.

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.

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

Peace.

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.