the end.

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I just wanted to wrap up this blog and report that I am nearly completely free from the saga of the last two years. Illness has taken me down many different roads- mentally, emotionally, physically, and spiritually- and has been the biggest challenge in my life so far. It has made me who I am today.

During the time that I was very sick, I felt- most of the time- that things were never going to be okay again. I am generally a really positive person, but I actually began to believe I was cursed. Doomed. But finally, after 18 months, things DID change.

That’s the main thing I want you to know, if you are reading this from the depths of your own struggle with illness (physical or mental). Things can get better. I want to leave this blog up and running as a testament to the struggle of the last 2 years and, equally importantly, as a testament to HOPE (which is not a feeling or a decision but is the very real, undeniable fact that change is ALWAYS possible).

My world is becoming full now, after a long stagnant, frustrating, and lonely time period. Life is opening up again! Amazing.

So for the record, I was diagnosed with: Chronic Active Epstein-Barr Virus, M.E./Chronic Fatigue Syndrome, & a rare auto-immune disorder in my B-cells. And, after two years (including being homebound, on bed rest, living dependently and independently), I am basically FULLY RECOVERED.

If you are dealing with a chronic illness and feeling hopeless, please contact me. I care a lot about what you are going through.

Comment with any questions or send me an e-mail.

G-r-a-t-e-f-u-l-l-y His ❤ ❤ ❤

positively positive direction

ImageFor the first time in eighteen months, I think I am going to be okay. I am making real progress towards regaining energy, decreasing pain, and feeling generally more myself.  Yay!  Praise God!

I want to provide an outline of the things that I think are helping. If you are someone who is in the midst of a longterm illness and you’re interested in sharing stories, please please please send me an e-mail. I would be so happy to share details with you, and I have some specific suggestions if you are initiating any of these changes.  Seriously, e-mail me!  You aren’t completely alone.

The things I have been doing differently for three months:

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  • Nutrition: I eat a high-calorie diet of plant-based, nutrient-dense foods, mostly vegan and gluten-free. Lots of raw vegetables. Mega nutrition, every day.  Thanks, Mom!
  • Mental Health: I am getting psychological help to cope with all of this.  I am working with a psychologist on cognitive restructuring, hoping to break the cycle of pain, fatigue, and depression. I also began taking an anti-depressant, which seems to keep me trying. I didn’t realize I had become depressed, but I am learning that this is a common response to a life-altering injury or illness.
  • Gradual Endurance: After the initial phase of bed rest, I began adding short periods where I was  upright and walking around, beginning with five minutes a day and adding minutes daily. After a few weeks of this, I started using a recumbent exercise bike in my home. I began by biking just three minutes a day and increased by a minute daily.  I have been biking thirty-minutes a day for four weeks now!

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  • Physical Therapy: I began strength building exercises at home, using the leverage of my body and a rubber exercise band. I am cautiously targeting the muscles around the areas of pain (mostly neck, head, and shoulders), which felt pretty counterintuitive at first, but has really helped over time.
  • The key to physical activity has been to increase slowly and find what works (for me, it was the recumbent bike, but for others, it may be something like pool-walking).  Also, it has helped to expect that there will be some pain and fatigue along the way, but remember that these sensations are not necessarily signs of further harm. This mentality is still a struggle sometimes, but seeing my overall progress has made a big difference. It also helped me to make a plan and commit to it, so that the days when I feel really bad don’t flatten me into inactivity. And, likewise, on the good days I don’t get over-excited, push too hard, and shock my system.  Gentle, gentle, gentle.

Perhaps working all of these angles simultaneously created the catalyst for change.  When I was able to see my wellness on a multifaceted spectrum, instead of in the dichotomy of “sick” and “healthy” I saw ways to engage the parts I can control (which I guess is the basis for holistic treatment).  That being said, I believe that TIME has been the biggest factor. I have tried most of these concepts in the past with negative results. So the virus had its own timetable, despite every attempt we made to change it. It’s just as the NIH neurologist told me, “Patients with long-term illnesses are moving targets.” In other words, what didn’t work in the past might work now. Change is always happening, sometimes only beneath the surface.

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Today, I am continuing on the plan to gradually add activity to my days. I am now able to feel pretty okay for the entire day.  I can practice gentle yoga at home and go for long walks with my dog, which are two things I have longed for since last July.  I wouldn’t have been able to make these changes without the help of my parents.  My mom has been living with me and taking amazing care of me in so many ways for the last two months.  Independent living will be something I ease into before too long.  Right now, I am trying to focus on one day at a time. When I get anxious about whether or not my progress will continue or how fully I will recover, I breathe deeply and say a prayer of gratitude. I am trying to sit with the uncertainty that underlies everything- reminding myself that health is never a guarantee for anybody- and then just return to the present moment.

I am hopeful that, in time, I can build a life and identity that is not centered on illness. As lost as I feel, I trust that good things will flow from God and that I will slowly find the light again. It’s astonishing that this illness- which felt stuck for eighteen long months- is seriously changing. It gives me great hope for other sorts of transformations, even and especially the ones we “know” are impossible. I still have a long way to go, but I am thrilled to be where I am.  In the months to come, I intend to trust the process, celebrate progress, put aside fears…  & just go with it.

I’d be honored to hear from you:  graceliggett@gmail.com

like a bird on a wire

energy-healing-spiritual-downloads-wallpapersMy trip to the NIH was anti-climactic.  For all of the genuine attention I received from their doctors, I didn’t leave with the kind of answers I had hoped for.  The virologists place my sustained, low-load virus in a category of mystery.  As in, there is “something off” with my immune system, but there aren’t any safe treatments that will reverse this condition.  The doctors I saw will continue to collect data from cases similar to mine and also monitor me, so it is possible that they may come up with a trial treatment in the future.  My prognosis is uncertain; it’s possible I could get progressively worse, stay the same, or get better in time.  Hoping for Option #3.

What now?  The NIH neurologist who met with me had one profound suggestion.  She has seen patients who, debilitated by a major virus, need years to recover.  We talked extensively about the nature of my symptoms and subsequent lifestyle, so she had an accurate picture of the level at which I am able to function.  She suggested that I try a program of bed rest followed by a period of integrating carefully-calculated minutes of being upright and in motion, over a period of months.  This basic concept is known as “Graded Exercise Therapy” and can be part of an effective treatment plan for ME/CFS and for POTS.

So, that’s the program I hope to begin shortly, with the help of my family.  It’s a bit scary because I have worked hard to be able to do some basic things routinely, and now I am taking many steps backwards and going to decondition myself by being completely sedentary.  Also, isolation is wretched.  But there is sound evidence for this type of therapy, and I don’t know what else to do.  I am praying for and working for a better attitude, because I have been failing in that department lately.  The last month or so I have been resigned, ungrateful, and emotionally tapped out.  But, unexpectedly, in the last day or so I am seeing little cracks of light.  Maybe a few months from now I will miraculously emerge, little by little, like a moth gradually breaking through the walls of its cocoon.

P.S. Soon I’ll be taking a break from the Internet in order to spend a couple of weeks in complete rest.  Bye, world.  Cheers to fresh possibilities.

beneath an orange sky

Rustic barn surrounded by a field of Cow ParsnipI am off to the NIH tomorrow!  A group of doctors studying virology, chronic-active EBV, and the genetic defects associated with prolonged infections, have accepted my case.  My dad will take me to my appointment on Monday at their facility outside of DC.  This could be the first time in nearly eighteen months of illness when I won’t be told we have not seen this before.  It’s a tremendous opportunity.  Truthfully, I’m feeling surprisingly numb to the whole situation.  Maybe I am avoiding the anxiety of imagining an actual cure.  Maybe I am protecting myself from the depression that might follow if this is another dead-end.  Still, I have moments where I am exploding with hopefulness!  I am anything but cool.

On Thursday I turned twenty-seven.  My birthday was an ordinary day.  I felt pretty ill so I just took it easy and tried (with reasonable success) to keep away from that irksome self-reflection and life-progress type of thinking.  I moved a chair under the window where I used to keep it, so that I can kick back to some music and watch the clouds and trees.  I went for a short walk and accidentally stopped to rest on a fire-ant mound, which was a new experience.  The ants swarmed my sneakers and socks.  Before I realized what was happening and managed to strip down to bare feet, the little monsters got in about fifteen bites, which remain surprisingly swollen and itchy.  Mega mutant fire ants.  My lovely Grandma Anne sent me a crystal angel ornament, which I hung in the window so that it catches the morning light and casts rainbows across the walls.  Heard on the radio that Nelson Mandela died.  My dad took me to an early dinner at a restaurant down the street.  We sat outside (yes, it is still summer here) where we could watch the commotion of downtown.  The park across the street from the restaurant is decorated for the holidays, with colorful lights dripping from the wide canopies of oaks and banyans.  Towering palm trees line the sidewalk, and strings of white lights wrap their trunks like barbershop poles.  

Maybe the end of all of this is just around the corner, right?  Remember: anything is possible!   I should probably just pray for grace and a sense of humor along the way.  Eeeeeeeeeep!  Emily Dickinson writes, Hope is the thing with feathers- that perches in the soul- and sings the tune without the words- and never stop- at all.

one tiny bursting moment

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(giving thanks)

For the delicate dance of black-eyed susans in the morning sun.  For the kids running from the waves, shrieking in  delight.  For the spotless blue sky stretched wide and untouchable.  For the slender sea oats bowing slightly.  For the patches of clover that cool bare feet.  For the physical ability to clip my toenails.  For the knowing of the luxury of clipping my toenails.  For the flat sea and her quietly lapping waves.  For the lovers wading out far from the beach, wrapping their arms and legs together like tangled seaweed, bobbing face-to-face.  For the words spoken secretly between them.  For crushed ice on hot days.  For nights cool enough to keep all of the windows open.  For the way pain leads to reckoning.  For the fishermen standing in waist-deep water since dawn’s first light.  For the writers and poets and painters and preachers who make this magnificent and terrifying world into tinier, bite-sized pieces.  For the shape of seagulls hovering in flight.  For fish spit from the sea and writhing on the shore, flickering silver in their final moments.  For the odd shapes of egrets and herons.  For the end of chasing: excitement, attention, sexiness, and change.  For the elderly couple slowly meandering down the shoreline.  For my broad and unfeminine feet.  For my family’s relentless reassurance.  For neatly packed leftovers placed in the fridge.  For sorrow.  For the dream-world.  For the knowing of how little I know.  For the endless places I will never go, things I will never see.  For the enormity of God, whose glory is only meagerly hinted at by the beauty of these creations.  For the sound of footsteps behind me.  For the man in headphones who drags a metal wand, grumbling and searching for buried treasure.

only small things

top baby pine

I don’t have much to offer today beyond an update on my medical saga.  I have now been sick for 1 year, 3 months, and 3 weeks.  It’s funny how time operates- the more time I spend in illness the less terrified I am of more time passing this way.  I used to think I can’t imagine another week like this, but now a week is a blink and a month is a snap and a year is… well, actually, a year is still a bit daunting.  It has occurred to my family and to me that my condition may be worsening in the last months, instead of staying stable.  I know it in the intricacies of my body, but the changes may be caused by an accumulation of time spent in pain and inactivity rather than an acceleration of the virus.  It feels like a slow breakdown is happening, regardless.  I think of little flurries of snow piling high along a wooden fence.  A white shelf.  It’s November and my mind is in the Midwest, I guess.

My case has been sent to a doctor at the National Institute of Health in Bethesda, Maryland, and we are waiting to hear back from him about when and if he can accept me as his patient.  This doctor specializes in chronic Epstein-Barr Virus and has a lab that is doing research in this field (one of the only places where this is happening).  I really hope that I will get to see him.  Also, a specialist in immunology has been running blood tests on my immune system, in hopes of articulating its dysfunction.  Perhaps the combination of this information with the knowledge of the doctor at the NIH will lead to a treatment plan.  I am very hopeful that this will happen, but I know that mystery abounds in the medical world, and there are plenty of lives permanently ransacked by physical illness.  I am just grateful that I have access to medical care and a supportive family.  I try to remember that I am coming at all of this struggle from a place of privilege.

In the meantime, my days have been passing in basic peacefulness.  Cooler air has arrived and it billows through the apartment at all hours, encouraging the feeling of change, like we must be on the brink of something big.  There’s no race for the finish, though, just a hopeful stillness.  Tomorrow I will try a different approach to pain management, using a fentanyl patch.  I am apprehensive but willing to see what it’s like.  With severe chronic pain it often seems like a choice between insane discomfort and doped-up dysfunction.  I guess the idea is finding the balance and accepting that feeling systematically healthy is off the table at this time.  I can’t imagine being well again, but I know that I felt fully well for twenty-five and a half blessed years.  So bizarre.

I decided doing graduate work online was unrealistic, so I let that idea go.  I want to pursue this opportunity but I am too sick.  This illness is physical and also psychological.  I have said from the onset that it feels remarkably neurological; there are days when my brain is so foggy and twisted that I can barely stumble through the normal daily activities without harm.  Have you ever had the kind of over-the-top-hangover that just can’t be shaken?  The kind you have to call off work for and still feel wrecked from by nightfall?  This mental confusion is sort of like that.  Also, on many days, any time looking at a computer screen instigates severe headaches that can go on for hours.  So adding twenty-five hours a week of brainwork would be absurd and probably disastrous.

I used to think about how western cultures dismiss the connection between body and mind, and how the two are so intimately related that they may as well be inseparable.  I practiced yoga, jogged, and reaped a lot of pleasure from my body back then.  These days, I am glad that my body and mind do not behave as one.  I am grateful for my mind’s departures.  For the luxury of imagination.  For the transcendence offered by other people and by all of our various forms of expression, including written words, music, and visual art.  I asked my parents a few weeks ago what I was like as a baby.  They both told me I had these gigantic, gaping eyes, that responded to the world more actively than most infants.  I feel this way, truly, like I am super-stimulated just by looking at things, even the same things over and over.  Like baring witness to the world is enough, like being wide-eyed and still is built into my personality.

I’d like to find avenues to be something positive to someone else.  It’s complicated by my physical limitations, but I know there are ways.  If there is something I can do for you, whether you are in my physical world or not, please ask.   You can send me an e-mail or a message through this blog.

starfish

there are two things living here
first, there is the physical pain-
this wolf who wears man-clothes
he’s all matted hair and stench.

this wolf comes to my door
and lets himself in
sometimes with dawn’s first light-
greedy and insistent.

pain locks dull teeth into my neck
and if he’s feeling frisky
digs his chipped claws in my eyes
so that everywhere I go
he is all I can see.

sometimes, pain is not so bad
and I carry him through supermarkets
like no big deal.

There are starfish that replicate
when an arm, which was severed,
grows longer, larger
becoming its own starfish.

the second thing living here
is my jumble of thoughts, the:
this-won’t-end and
how-did-this-happen and
when-will-it-stop and
what-did-i-do and
will-it-get-worse-and

like the broken starfish

soon there are two wholes-
the wolf has a comrade,
perhaps meaner than its maker.

the second thing grows stronger and
I, like a doting mother
can’t seem to stop feeding it-
my anxious thoughts popping like boiling water.

the second thing roams the halls of my home,
pulling pictures from the wall, smashing things
while the wolf sits cozy by the fire,
his feet up on an ottoman.

I fear we will grow old together.

tonight, we’re the sea and the salty breeze

IMG_5475Where I live is a place as mysterious as the path that brought me to it.  I never wanted to live in Florida.  Before I moved to St Petersburg nine months ago, I imagined Florida a hellish pink and teal abyss, as flat and uninspiring as the postcards depicting it.  A place to visit and promptly return home from.  I was certain that my heart spoke only in the language of rolling hills, yellow maples, and gurgling creeks running down mountainsides.  I thought that beaches were for the birds and palm trees were artificial.  I picked St Petersburg because it is close to where my dad lives, and I am too sick to live independently.  St Petersburg is a mid-sized city on a peninsula off of the larger Floridian peninsula, so it is surrounded by water on three sides, and you must drive across a seven-mile bridge to come here.  To the east is the bay and to the west is the Gulf of Mexico.  I live in an apartment six cobblestoned-blocks from the shoreline of the bay, in a neighborhood of old bungalows and small apartment buildings.  Lately, I’ve been paging through my journal, trying to unravel the last year.

This,  written my first week in St Petersburg:  Night enters quietly as Jez and I walk through our new neighborhood.  The houses here are all different and each is nestled in a haphazard symphony of drooping, wide-leaved banana plants, thin, spine-like palms, and ancient, gnarled oaks.  The eldest trees have thick branches, which arch and stretch across the road and are draped in sage-green moss that hangs soft and heavy as if just laid to rest by a giant in the sky.  Every home has infinite precious details.  Walking through this world is like reading a hundred little poems- haikus being written in this moment and also stretching back into the histories of each ragged heart.  It feels as if people here are living their lives well.  I am really overwhelmed by the energy here of kindness, authenticity, and peace.  Weaving down the dark sidewalks on our way home, I pass the kind of homes I imagine creating someday.  How bizarre to see my vague, emotional musings suddenly articulated, real and plentiful.  We pause in front of one particular bungalow, glowing amber through the jungle-like overgrowth.  The front door is propped open into a screened in porch.  From the sidewalk, I smell the complex warmth of sautéed garlic, opening and mingling with curries and sweet onion.  Inside the home the walls are deep red and there are plants and framed photographs of children, artwork and books about.  I breathe in love and reassurance and the slow, comfortable passing of time, which can only be eased to this pace by the communion of two compatible beating hearts.  Is there a road from Here to There?  I am so broken and so very alone, but it occurs to me how quickly this could change.   They say it only takes one person to make you feel like you belong in the world.  I linger…. Crickets, cats, a table set for two with a tiny bouquet, and on the corner, a rope swing that says “Just go with it.”

What a surprise, this instantaneous and deep recognition in an unfamiliar place.  I remain enthralled with my neighborhood and the people here and enjoy being surrounded by happy homes- these visions of someday- even if it feels remote and improbable that I will ever fall in love again.  “Someday Maybe” rings like church bells, far away and constant.

The land here wears a different sort of beauty than what I had known.  The beauty here is sticky, ripe, and unruly.  There are no mountains to get lost in, no trails that lead skyward.  The horizon is bare and shapeless.  But wait.  Walk outside and there are lizards as tiny as your pinky-nail and trees with blossoms bigger than your face and flocks of bright green parrots that fly wild through the neighborhood, squawking madly mid-air.  Yes, there is heart-stopping beauty here.

I don’t know if I will ever see mountains again or feel the endorphin-rush of burning thighs working up steep switchbacks.  But do I care?  The older I get, the less interested I am in the sensation of a single moment, and the more interested I am in the accumulation of moments, the slow steady trod of a life in some direction.  Maybe inward.  I am drawn to the things between things.  The line forming between my brows.  The thumbprint of the moon in the late afternoon sky.  The snails that cling to the dumpster.

In my journal, on my fifth day here:  Another morning in this new place.  I open the windows and a bright cool wind carries in birdsongs and the swish of street traffic.  Saturday morning is bursting wide open and I am so happy to be here.  I don’t know why- in spite of everything I am dealing with, physically- I have the strangest, most overwhelming feeling that I am exactly where I am supposed to be in the world.  Like I have stumbled into a familiar place, as bizarre as this city is.  Is this luck, finally turning?  I am so blessed.  Yesterday- weary from nothing and aching all over- I lay down on the sand by the bay and watched the seagulls and giant herons and felt the breeze and sunlight kissing up and down my body and thought that even if I’m ill forever, this is enough.  Maybe these moments are enough.  Emptied, filled, and re-filled. 

Pretty quickly, I found out that Florida is not what I thought it was.  St. Petersburg is a place that is stunning in facets all its own, and the beauty here continues to unfold.  It’s dizzying, really.  But this is not what I am trying to understand.  The thing is, most of my time is spent in my apartment.  These white walls could exist in any city, cradled by any terrain.    I could be in Kansas.

It is something non-physical that makes a place stir you inside; it doesn’t make a difference if you backpack through Thailand or if you live your whole life in the town you were born in.  There is no hierarchy amongst landscapes; there are no secluded, sacred grounds.  God is as much in the back alleys and hospital wards as God is in the blue blanket of the Himalayas.  I guess I have to discover this day by day.  While my illness keeps me confined in many physical ways, my life is not empty because it is small.  There is so much here.  So much.  And the blessings bloom forth and open up, perhaps even more so because I have had to be still and do very little for a long time now.  I want you to take comfort in this.  The rooms of our lives- no matter how desperate, alone, and painful- can never be empty.

Give thanks.  I will never exhaust the supply of blessings, never finish naming all of the beauty here, never look around and find myself truly bored or deserted or tipping my glass for the last drop of spiritual milk and coming up dry.  Yes, I have bad moments, bad hours, bad days.  But I believe God’s love is infinite and everywhere and when I can remember this, joy abounds and it runs circles around pain, illness, and fear, making them small and mute.  When I can remember this.  When I can remember this.

One thing about palm trees is there are a million and a half different types.  Yes, arecaceae is a massive botanical family, in which the tropical-clones I had pictured are only a sliver of what is.  Some palms are short and stocky with braided trunks.  Others are spindly, five-stories high, and arch gracefully at the top, leaning towards the earth.  During storms, these palms thrash so wildly that the wind can rip apart the tops and throws their heavy, tattered leaves into the street.   And when I lay beneath the weathered palms by the bay, they are like angels hovering over me.  Their wiry trunks wind towards the sky and explode at the top, where branches dance like tinsel in the sunlight.  Plenty.

we have what we seek – it is there all the time

DSCN3507On Wednesday, I saw a new doctor- another specialist in infectious disease.  Around his office, there were three iron sculptures of humpback whales.  The whales were surging upwards, breaking the line between sea and sky, frozen in their spiral dance together.  Lifting.  This doctor wore a tie printed with Van Gogh’s The Starry Night and he tipped back in his chair, propping his feet up on the desk.  He looked me in the eyes and said, “You have my deepest sympathies.”

We walk through the last fourteen and a half months together.  He reads through my files- blood labs, scans, emergency room visits, biopsies- and listens as I half-heartedly explain the intricacies of this illness.  I tell him the big problems- that I barely have the energy to move through the minimum functions of life (bathing, eating, chores)- and about the pain, which flares and shrinks but never leaves.  I also tell him the little embarrassing details, like how I sometimes accidentally start peeing in the middle of any random activity and my internal muscles are too weak to stop the stream of urine down my leg.  Glamorous, huh?  And I tell him the way my neck hurts when I wake up at night sometimes so I have to take a warm bath before I can go back to sleep but afterwards am too weak to get out of the bath so I lay in the empty tub for a while, while my dog stares at me from the corner of the bathroom.  How to paint the picture of my world for this man?  He examines me in the usual way, shining a bright light across my pupils and pressing his palms across my belly to search for my spleen.

He says we need to find an accurate description of this disease, that CFS/ME is a disorder that may cover my symptoms, but the presence of Epstein-Barr Virus in my DNA for over fourteen months is the primary concern.   He hypothesizes that this virus is still active because I have a rare genetic defect in my B-cells, which are a piece of the immune system.  I don’t know what this means, really.  He says he will sleuth out a specialist in immunology who will be able to do the right sort of delicate blood analysis to see what exactly is wrong with my B-cells, and then brainstorm a way to fix them.  One idea is using a chemotherapy drug called Rituxan, which my grandma received during her treatment for lymphoma; I remember it because it is bright red and looked like Kool-Aid dripping through her IV.  Rituxan kills off B-cells, so it might help, but only if afterwards my B-cells grow back.  This doctor says Rituxan is not a benign treatment and I ask him what the stakes are and he says it could be lethal.  He says that, if he were in my shoes, he would be so unable to live in the condition that I am in that he would probably take the risk.  But before we can consider this, I must see the immunologist.  That way, if something goes wrong, he “will feel bad, but not feel guilty.”

This doctor is compassionate, patient, and seems determined to help.  I am grateful to have him on my team.  And he confirmed my growing suspicion, despite my hopefulness, that this illness will not correct itself spontaneously or get better gradually.  No amount of rest, nutrition, or time, is likely to reverse things.  How bout a miracle?  The overwhelming feeling I am having is that my life is going to continue to be quite difficult for a long time.  We are uncomfortable with mysterious, prolonged suffering, because most things in life have an explanation, a remedy, a forecast, or at least a process by which to improve.  My illness has none of these.

Sometimes, I can see that suffering and prosperity weigh about the same.  It’s just a preference that we have (especially in this culture), towards enjoyment, choices, ambition and self-creation.  Yes, I prefer to feel well and to be autonomous, but at the end of the day (or the years) suffering is just one part of the messy tapestry of life, and what matters most is that I am choosing to participate.  Enter, freedom.  Enter, peace from God, by which I can welcome this long era of difficulty with a spirit of exploration and without resentment.

This illness is proving to be my ultimate wilderness.   It is a foreign land, with valleys and streams, dark canyons, and warm fields of wheat.  There are glaciers on fire and wildflowers hanging from the clouds, cool mossy enclaves and moonless nights, hollow tree-trunks in which to hide and herds of lavender-colored fawn.  Rapid rivers open into placid seas.  Humpback whales leap out of the water and float into the starry sky.

with your whole heart

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… the impulse to keep to yourself what you have learned is not only shameful, it is destructive. Anything you do not give freely and abundantly becomes lost to you. You open your safe and find ashes. -Annie Dillard

I’ve added some new sections up top, including an info page and a description of:  how CFS/ME entered my life, manifests itself daily, and forecasts the future.  Over the last week, I have had the humbling privilege of hearing from a few of my lovely readers.  I am reminded of the gift that we can all give one another, simply by sharing and listening with an open heart.  Even (and most importantly) in our heaviest and darkest days.