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Posts Tagged ‘disability’

Do you think you don’t matter because you can’t do “big” things anymore? Click here to read a short entry on the blog of a Benedictine monk..

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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.

 

 

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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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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.

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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.

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.

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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.

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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.

 Peace.

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