Posted in Benedictine, The Days of My CFS Life | Tagged Benedictine, CFIDS, CFS, chronic fatigue syndrome, chronic illness, chronic illness survival skills, disability, Epstein Barr, hidden life, ME/CFS, migraine, myoclonus, oblate of St. Benedict, peace | 2 Comments »
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
Posted in Rule of St. Benedict, The Days of My CFS Life | Tagged CFIDS, CFS, chronic fatigue syndrome, chronic illness, Epstein Barr, ME, ME/CFS, migraine, myalgic encephalomyelitis, myoclonus, oblate of St. Benedict, peace | 14 Comments »
I suspect that I am not the only one with health issues who struggles with handling practical things. In this case, I refer to so-called routine dental visits. I say “so-called” because they are anything but routine for me. In fact, the only part I can take for granted (allocate to “routine”) is that I am afterward going to be pounded in every way by this disease.
Make an appointment six months ahead of time? I can’t predict six minutes in advance let alone six months!
About a year ago, feeling bad about taking advantage of the good nature of the entire staff of my dental office by being forced to repeatedly change appointments (sorry, but no way can I go if the myoclonus is breaking through and going with a migraine is beyond masochistic) I presented the problem to my dentist and the hygenists. I know – why didn’t I think of that sooner?
They weren’t at all upset at the way I was doing things, but when I said it didn’t seem fair to anyone they offered a solution we all felt better about. I don’t make a routine appointment. They offered to put me on a “call if there is a cancellation and see if she wants it” list. So, beginning the month I am due in, if there is a cancellation for an afternoon slot they call and ask if I can make it that day. If I am in good enough shape, I go. If not, I pass and they call someone else. It’s as close to spontaneity as can be managed for me, and doesn’t waste their time if I’m not well enough to go that day.
It’s a simple idea that I don’t remember sharing here. I hope it’s helpful.
Posted in Explanations to Others, oblate of St. Benedict, Survival Skills, The Days of My CFS Life | Tagged CFIDS, CFS, chronic fatigue syndrome, chronic illness, chronic illness survival skills, Epstein Barr, explaining to others, ME/CFS, migraine, myalgic encephalomyelitis, myoclonus | 6 Comments »
It was marvelous!
It is winter here, more often gray than not. Sometimes everything has seemed gray, neither this color nor that. Just – gray. I have been very ill, sliding steadily downward for some months culminating finally in leaving my bed for only very short periods. In times like those, I am easily haunted by “what if” whispers. I pray for the graces God knows I need, I distract myself with books, puzzles and TV if the migraine monster isn’t visiting. Since he’s been visiting far more often than not (and bringing his other ME/CFS buddies with him), well, “gray” is the nicest description I can manage.
But today – ahh today! Marvelous!
Today in this winter place, gray did not dominate. The sun shone in a brilliantly blue sky and lured me as memories surfaced of how I’ve coped in the past. Whispers, promises…”Come and see, you know I show you treasures, come and see…”
Yes, I know, I sound loony but I’ve always been a bit of an oddball – not such a bad trait, I’ve come to think.
Unable to resist the lure and remembering that forcing myself outside for even a few minutes has been one of my survival tools during the long decades of this disease, I decided to go out. Wanting all the good things that sunlight can bring, I left off sunscreen and sunglasses – another of my survival tools to let my skin contribute to the making of vitamin D and my eyes be the conduits of chemical balancing. It doesn’t take long, only a few minutes.
I bundled up and leaning on my cane told my husband with a smile “If I don’t come back, check behind the hill.” I knew that a walk down the road was not within my reach, but with the benches set around the yard, I should be able to make the circuit. And out the door I went.
WOW it is COLD out here! But oh, the sun is shining, I hear birds!
I began to walk toward the hill, intending to go around the back of it and taking my usual route. I stopped. “I always go this way, counterclockwise” I thought and abruptly changed my direction to the opposite.
I walk to the property line and pause, lifting my face to the sun. Looking down again, I see the section of split rail fence my husband put here years ago and realize there is lichen growing on it. Here is life on dead wood. Whole colonies are thriving; the wood long dead yet here is new life. I find myself smiling and whispering, “New life on dead wood” thinking I’d found today’s treasure. As the pitchmen say, though, “But wait! There’s more!”
I came to the side of the pond, smiling at the churned up tracks of all the animals that come to drink here, smiling too at the sight of a junco sneaking a sip under the brush at the base. I think how nice it is for the animals that a recent thaw caused the ice to recede a few inches and give them open water at the edges. It is too cold to sit and watch as I would normally do, so I move on.
As I reach the side of the hill, I find my gaze drawn upward and though I know I can’t follow that path today, I am still happy in the cold breeze and the brilliant sun. How could I have forgotten how much this effort always lifts my spirit?
I stop in my tracks.
Did I just see what I think I did?
Ohh! There it is again! What a jewel in the sun and right in front of me! As brilliant as the bluest sky is the male Eastern Bluebird not twelve feet away. He dips to the ground then up to a branch, glowing in the winter sun. Another! I know they are shy so I don’t move. After a moment of watching, they seem to decide I am not a threat and resume their typical dip-and-up feeding pattern. I watch until the cold bites so hard I must move, but grinning now so widely I chuckle inside to think how I must look.
Suddenly I realize I am surrounded out there behind the hill by woodpeckers, juncos, chickadees, and too many more to name. Such life! Such abundance! My God does this! I am transported with a joy I have not felt in a long time. “Thank you – thank you!” I whisper both inside myself and out.
I make my way back toward the house, excited by the thought of telling my husband what I’ve seen. The neighbor’s dog catches sight of me and begins to bark. I know him to be a big baby who probably doesn’t recognize the figure in the bulky winter coat as someone he knows. So I call to him in silly talk and begin to walk toward that side of the property. I have the neighbor’s permission to visit the dog anytime I like and I decide that maybe I can manage it.
Just then my neighbor comes outside to see why the dog is barking, seeing each other we call out and meet by the dog for a visit. Silly, giant dog, delighted that I’ll toss his slimy Frisbee for him, makes us both laugh; so tough – such an act. More delight for me.
Suddenly my strength leaves me and I must head inside quickly – but I am still smiling. How could I have forgotten how much these little things help? The migraine monster is coming back as I type this but even he can’t touch my joy today.
Life growing on dead wood,
Bluebirds upstaging the sky,
Silly dogs, friendly neighbors,
My God does marvelous things!
Posted in Survival Skills, The Days of My CFS Life, Uncategorized | Tagged Benedictine, CFIDS, CFS, chronic fatigue syndrome, chronic illness, chronic illness survival skills, Epstein Barr, hidden life, ME/CFS, migraine, myalgic encephalomyelitis, myoclonus, oblate of St. Benedict, peace | 10 Comments »
We too are those disciples in the boat sent by Jesus to the other side of the sea. In the words of the early Church writer, Origen, "Faith is learned by risk." During the fourth watch of our nights, how will we manage the winds and waves of our lives? Will we hold true to our faith, to our monastic vocation?
Posted in Benedictine, Survival Skills, The Days of My CFS Life | Tagged CFIDS, CFS, chronic fatigue syndrome, chronic illness, Epstein Barr, hidden life, ME/CFS, migraine, myalgic encephalomyelitis, myoclonus, oblate of St. Benedict, peace, Rule of St. Benedict | Leave a Comment »
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.
Posted in Benedictine, Explanations to Others, The Days of My CFS Life | Tagged Benedictine, CFIDS, CFS, chronic fatigue syndrome, chronic illness, Epstein Barr, hidden life, humility, ME, ME/CFS, migraine, myalgic encephalomyelitis, myoclonus, oblate of St. Benedict, Rule of St. Benedict | 12 Comments »
Cold depths remain
Boulder tip revealed
It was always
World drawn back
Claw and muscle
Radiance or cloud
rock is comfort
Posted in Benedictine, oblate of St. Benedict, Rule of St. Benedict, The Days of My CFS Life | Tagged Benedictine, CFIDS, CFS, chronic fatigue syndrome, Epstein Barr, hidden life, ME/CFS, migraine, myoclonus, oblate of St. Benedict, peace, Rule of St. Benedict, silence | 4 Comments »