Reserving and Expanding

It’s a season of reserving: my energy, my resources, my health.  My own body thinks it feels counter-intuitive to rest more in the summer.  People are swimming, going to sporting events and concerts. The sun is out and typically people feel more free.

Again, I’m learning to sink my patterns to my own body, rather than mainstream culture.  And I’m wondering about new ways that I might be able to be more active in the winter, when others decide to stay inside.

One of the early lessons to learn in chronic illness is to reserve your energy, to use it on the things or people most important to you before you run out of energy for the day.  It’s a hard reality to keep coming back to-especially in my 20’s.

But after years of learning to reserve my energy-it’s all bottled up.  And yes, I have given to others in these past several years, and yet there’s more.  There’s more I want to say, do, experience.  I feel that my youth does not match the severity of my illness.

And that lends itself to these awkward growing pains.   The tension of letting myself dream and asking myself questions like, “What do you want?” and also being willing to let go. And let go again. And let go again. And still having the courage to wake up in the morning wanting to have fun, not just manage an illness.

Yet, it’s also a season of expanding. Of a new job. Soon to be a new home. Of investing time in new friendships. Learning more about mold toxicity and what I need to be aware of. Letting others help me.  Empowering others so that they can begin to understand what I’m going through.

What I continue to be amazed about, even in these days of fatigue and nausea from detox reactions is that my body tells me all I need to know.  Of course I need help from doctors and friends-but my body tells me all I need to know.

The key is to listen–and have the courage to listen to those quiet whispers day after day after day. Your body tells you that you’re reaching your limit or that it’s time to take a risk.  It tells you if you need to reserve or expand.

The truth is: My body doesn’t lie. And on the hard days of chronic illness it would feel better to be ignorant of this fact.  But the more I learn to lean into the tension, I more I learn to appreciate all my body has to say.

Those years of severe inflammation was the communication of an autoimmune disorder.  My body was trying to alert me to the fact that my body was beginning to attack itself. My brain fog alerts me of chemicals and mold. My fatigue was a result of severely depleted thyroid and adrenal glands.  All this was hard information to swallow-yet my body doesn’t lie.

Yet, so much gratitude exists in a clear mind, a strong body, sleeping eight hours per night and waking up rested.  My body is communicating, “You are on your way toward health. Be thankful for each moment. Pay attention. Beautiful things are happening right now.”

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In order to listen we must be still.  In order to be still, we must accept ourselves.  As we accept ourselves, we have the capacity to build this self-awareness.  And out of this self-awareness and love comes compassion.

Be compassionate towards your body-in all it’s resilience and limitation. As we accept all that our body has to say, we will be able to listen to others.  We will be able to accept them as they are- in all their resilience and limitation.

We will learn to reserve and expand together, honoring each others needs and celebrating the milestones.  This kind of relating is hard work and yet I think it’s possible.

But first we must be still.  We cannot relate authentically if we do not first do the hard work of listening to and accepting ourselves. I’m learning to do this better and better every day.  Some days get pretty ugly, yet the outcome is worth it.

Health Update-Summer 2017

I just saw the doctor last week for my 6 month check-up and here are the take-aways for those of you who are following my story:

  • I have been exposed to toxic mold and water damaged buildings and this mold toxicity is derailing my healing right now. Because of this, my body is having a difficult time detoxifying.
  • Indiana’s humid summers are pretty difficult for me.  There also are a lot of older, damp buildings that I’m just having to leave.  In order for me to heal, the first step is limiting my exposure to buildings with mold or poor indoor air quality.  This is the reason for me leaving my job at Fortune Academy and for another move coming up this fall.
  • The yeast overgrowth I still am dealing with is connected with my mold toxicity.  I’m being put on another anti-fungal to try and get rid of my candida a little faster.
  • A lot of my healing right now is focused on environmental factors such as indoor air quality and allowing my body to detoxify by being in safer environments.  For the next several months, I’m going to be experimenting with air filters and infrared saunas.

Thanks to many of you who know how hard I must fight for my health, who know that this journey is anything but linear!

What can become overwhelming on certain days is all the change that must happen for my health.  This too poses great opportunities, and yet the number of job changes and moves has been tiring.  I will be starting my own tutoring business and moving this fall in order to give myself access to better environments, all for the sake of my health.

As I am learning and internalize that I’m living with both a chronic illness and environmental illness-it takes a great deal of money to start making these lifestyle changes.  So I also may be looking into replacing furniture, my mattress and comforter, sheets, blankets, and pillows.  As I get closer to moving, I may be asking for help in replacing some of these items.

Again, I’m very thankful to those of you who are tracking my story with me, who desire my well-being and flourishing.

Cancelled Plans

I have cancelled many plans the last six weeks or so.  Late spring is a temperamental season for my body.  Some days I have energy, other days I don’t.  Some days the pollen and mold counts are high, and I’m doing everything I can to make it through the work day, just to rest enough to hopefully still keep my commitment to yoga.  Some days my students are more trying, zapping my energy faster.  Some days I react to a damp building, and some days I’m going into a situation where I know I will have some sort of reaction.

 

And I go back to the word that’s so hard to say sometimes: No.

No, a word that swims against the cultural norm.

No, a word that a 27 year old shouldn’t have to say so much.

No, a word I often say with tears in my eyes.

 

No, a word I am learning to befriend.

No, a word that helps me pay attention to myself day after day.

No, a word that isn’t a threat, but an opportunity to shed some of my “shoulds.”

No, a word that my friends know how to accept well.

 

Recently, I received the gift of acceptance from a friend.  She is getting married next month and I had to cancel attending her bridal shower because I just needed to rest that day.  On top of that, she stopped over on her lunch break for a quick cup of tea and to open her gifts.  Before she left she made sure to say, “You know, if you can’t attend my wedding because you’re not feeling well, it’s okay.  I know you care about me.”

My friend knows me well enough that she realizes that attending her wedding could be difficult for me.  But my saying no at times doesn’t threaten her.  She accepts it in stride and she knows that many times I say No, I really want to say Yes.

Friendship actually is about presence and absence.  About get-togethers and cancelled plans.  About silence and conversation.  As I’ve adjusted to a lifestyle that’s sustainable for a life with chronic illness, I’m still enough to grasp the nuances of relationships and the commitment of friends.  I know that my silence and the times I have to say no, actually do add something to a friendship. The times where I’m confined to my bed, unable to be with people, has allowed me to re-imagine how I can communicate my care and concern without actually being present much of the time.

The kindness and acceptance of others helps me in turn to be kind to myself.  I’m hoping over time to see cancelled plans as an opportunity to sink even deeper into stillness, to honor myself by resting, and by doing these things, bringing more peace to myself and my relationships.

Below is a picture of a walk I took with Cash last weekend, when I basically cleared my schedule for the weekend in order to read, rest and walk.  He was one happy camper!

 

Birthday Blessing

My birthday (January 3rd) has always been caught between the just-after-Christmas and New Year’s resolutions craze.  Many years, people go back to work or school on my birthday.  People are still sluggish, yet being pushed back into routine.  Talk of dieting and actually working out repeat year after year.  I try to make room, for yet another celebration, after all the celebrations seem to be over.

I read this blessing in John O’Donohue’s To Bless the Space Between Us: A Book of Blessings last year.  It’s simple and beautiful.  It’s a reminder to me that the greatest gifts are to be found on the journey-the good with the bad.  They are all invitations: to savor, to grieve, to delight, to play, to be silent.  Many many people have made my journey beautiful.  This year I’m especially grateful for those old and new friendships who have journeyed the past 3 years with me, the hardest years so far.

I’ve experienced living in a culture that does not have a category for chronic illness.  A culture that does not have rituals for grieving, like they do for celebration.  A culture in which friendships are more disposable than treasured. A culture in which I am seen more as broken, than having inherent gifts, even when I couldn’t be productive.

Even living in this reality, I have found many safe spaces and safe people.  I am thankful for the cultivation of friendship, for letting go of a 40 hour work week, for finding contemplative spirituality in a round about way, for giving myself permission to be quiet, not loud. For allowing myself to heal and take my time.

And to all those people who have witnessed and are witnessing my recovery, thanks for choosing to see and thanks for believing in me. May you be blessed.

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For Your Birthday 

by John O’Donohue

Blessed be the mind that dreamed the day

The blueprint of your life

Would begin to glow on earth,

Illuminating all the faces and voices

That would arrive to invite

Your soul to growth.

Praised be your father and mother,

Who loved you before you were,

And trusted to call you here

With no idea who you would be.

Blessed be those who have loved you

Into becoming who you were meant to be,

Blessed be those who have crossed your life

With dark gifts of hurt and loss

That have helped to school your mind

In the art of disappointment.

When desolation surrounded you,

Blessed be those who looked for you

And found you, their kind hands

Urgent to open a blue window

In the gray wall formed around you.

Blessed be the gifts you never notice,

Your health, eyes to behold the world,

Thoughts to countenance the unknown,

Memory to harvest vanished days,

Your heart to feel the world’s waves,

Your breath to breathe the nourishment

Of distance made intimate by earth.

On the echoing-day of your birth,

May you open the gift of solitude

In order to receive your soul;

Enter the generosity of silence

To hear your hidden heart;

Know the serenity of stillness

To be enfolded anew

By the miracle of your being.

 

Christmas Snapshots

This Christmas has been very restful and I’m very glad.  For the last several years I felt like I could not fully “enter” into Christmas because I was so exhausted.  I could physically show up, but that was about it.

This year, I got to attend Handel’s Messiah with several people from the Dwelling Place.

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My roommate Chelsea, was the master chef behind these meals:

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We decorated our apartment simply.

 

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I spent time with my sister, with my parents, with other friends from church.  I gave gifts and I received gifts.

 

And Cash the dog actually posed for a picture underneath his stocking!

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Advent and Reflection

On Friday, I went to Sustainable Faith Indy (SFI) for a 4 hour silent Advent retreat.

SFI holds snapshots of my healing process.  The first time I took a silent retreat was two years ago during Advent.  I had just quit my job at the Oaks Academy, and I wasn’t yet diagnosed with Hashimoto’s.  I had no job, was moving out of my apartment the next month, and I had no idea what to do to help myself.  I was desperate, anxious, and yet too exhausted to feel those emotions that strongly. Numb was a better description.

On these retreats, Advent guides are prepared for each participant.  As I looked through my guide from two years ago, I found in its pages a poem that reveals the depth of my sadness, of my desire for healing:

When Sickness Prevails

Fatigue helps me to befriend stillness

even when I scream into its void.

Silence reveals who I really am:

my fears, doubts, joys, and thoughts

and in that rest I know I am sick.

 

When sickness prevails, rest doesn’t satisfy.

Emotions run rampant, loneliness sucks me dry.

Fear overtakes my mind. I feel stuck.

Stuck in this moment, in this depressing hour

Never to get out.

 

When sickness prevails, friends are few.

I ask for what I need, but I am shut-in,

unable to do much activity outside my apartment

and then largely forgotten.

Forgotten because busyness reigns and words are cheap.

 

When sickness prevails and I am alone,

I try to distract myself and not feel.

Eventually I am still enough to cry

and those tears are held by those

acquainted with grief,

when sickness prevails.

 

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As I read this poem now, I am sad as I think back to that time, and yet simply grateful that two years later reflects a much different story.  As I sat down at the lunch table at SFI before my afternoon retreat started, I thought,

“I am among friends.”

Two years ago, I also wrote down a few longings I had, that are now a part of my every day life.

  • I wanted adult friendships, not mentors.  I wanted people who could handle walking with me in my story, yet saw me as valuable, and were willing to learn from me as well.
  • I wanted to feel like I could be included in the life of the church, not just as someone to help, but one with a vibrant story to share, even if I broached uncomfortable territory.
  • I wanted to journey with a few friends dealing or had dealt with sickness.  I wanted to feel like I wasn’t alone.

And this Christmas, all of these longings have been given to me.  I have several adult friendships, who walk with me in my story, and seek my healing right alongside me.  I have been lovingly included at Dwelling Place, and I have several friends with sickness, who help keep me grounded when I’m becoming fearful again or coming unglued, or want to give up.

In the midst of profound struggle, I have been given many gifts.

What are you reflecting on this Christmas?  What gifts have you been given? 

 

 

The Longing of Advent

When we commit to resting during Advent, some of our longings arise.  When we move more slowly and are more observant, we may also come into contact with the longings of others.

Post-election, and into Advent I have been reading African-American poetry.  These poems are beautiful and gritty and they demand an emotional response.  Below are two in particular that have grabbed my attention:

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Frederick Douglass

Written by Robert Hayden

When it is finally ours; this freedom, this liberty, this beautiful

and terrible thing, needful to man as air,

usable as earth; when it belongs at last to all,

when it is truly instinct, brain matter, diastole, systole,

reflex action: when it is finally won; when it is more

than the gaudy mumbo jumbo of politicians:

this man, this Douglass, this former slave, this Negro

beaten to his knees, exiled, visioning a world

where none is lonely, none hunted, alien,

this man, superb in love and logic, this man

shall be remembered. Oh, not with statues’ rhetoric,

not with legends and poems and wreaths of bronze alone,

but with the lives grown out of his life, the lives

fleshing his dream of the beautiful, needful thing.

Tomorrow

Written by E. Ethelbert Miller

tomorrow

i will take the

journey back

sail

the

middle passage

it

would be better

to be packed

like spoons again

than to continue to

live among

knives and forks

In these days, there is still so much hate, and that hate starts with me.  It starts with my ignorance, my fear of another,  my unwillingness to grow and change, my fear of vulnerability.  In this very hate, Christ was born.  People weren’t paying attention.  Divisions existed.

To some, Christ is born so commonly, without recognition.  And in his birth, he asks us to give up power and to embrace a life of listening and quiet, so we might start to hear the voices we have been ignoring.

To others, Christ is the balm of relief, a man of sorrows, acquainted with grief.  He is brother and friend.  He is the one who has been oppressed, who has been misunderstood, ignored, hated, shunned and abused.  He has come to bring solidarity and comfort.  To those weeping, He says, “I’m sorry and I’m here.”

As many of us are still grieving post-election, and trying to hope for better tomorrows, you are in good company.  Yet, as Robert Hayden says, politics are the not the true means of achieving freedom.  Freedom must truly start with my own heart, with making eye contact with a stranger, with desiring a diversity of friendships.

Advent’s message of freedom comes in the form of a baby, a vulnerable baby in need of protection, comfort and love.  Freedom sounds like vulnerability:

  • “I don’t know what your suffering is like, but I want to listen and hear your story.”
  • “Could you help me see my own blind spots, where hatred and prejudice linger?”
  • “I’ve never told anyone this before, but could you listen to some hard parts of my life?”
  • “Help me! I don’t know how to help myself.”

As we rest, slow down, and linger, may we realize both how much we are loved, and how much division there exists in this world.  We all on some level desire freedom, and in diverse relationships may we discover that we all need and are needed.  Advent in so many ways, actually teaches us that we think too much of our own importance, and we really just need help.

Thankful

This following post, I read at The Dwelling Place, as I reflected about this year and the small moments that have cultivated gratefulness in me.

 

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One of those notes from a difficult student that you hold onto! 

 

This time last year, I had just quit another job and I was starting another one. I was tired and fearful and yet trying to believe that there was a job out there that I didn’t have to quit after three months. I was new to Dwelling Place, just starting my job at the Dyslexia Institute, and just getting new treatments from a new doctor. There was a lot of new to juggle, and I was exhausted of new and transition.

 

Yet this year has been about small glimpses of beauty, hope and goodness. In the midst of continuing to learn what a healthy lifestyle means for me with a chronic illness, I’ve journeyed through a year of spiritual direction training, a course to grow my skills in teaching dyslexia. I’ve gone from working four hours per week to 35 hours. I’ve recently just accepted a literacy coach position at ACE Prep, a new charter school in South Broad Ripple.

 

I have a doctor who believes me and works hard to help me be as whole as possible. I’m apart of the most supportive communities I’ve ever been a part of in my life. I meet with a spiritual director who continually reminds me that God is much more kind and gentle than I ever thought. I’ve made really good food, and I’ve had awesome help moving, not once but twice.

 

Many of you have listened to my story and have responded graciously. I have wonderful friends who are walking this journey with me.

 

I’ve had moments of my journey where I couldn’t imagine a future of health. I didn’t even know what getting better would feel like. And yet, I’m living this journey where getting better is slowly becoming a reality.   There are still really bad days, flare ups and days when I want to quit. Yet I’m thankful that I now can be thankful for smaller and smaller moments. Small moments of healing have made this year a good one, even amidst the struggle.

When a Flare Comes and Goes

A few weeks ago, I was experiencing an autoimmune flare.  Physically, I couldn’t see where the energy from the day was coming from.  I powered through the day exhausted, but was not sleeping well.  Emotionally, I was either on edge or panicking.  It took longer to do simple tasks, and I started worrying about the future because I never felt rested.

It truly is difficult to find the root cause when dozens of symptoms are swirling around in your brain.

So I went back to the basics.  Breathe. Gentle yoga. Short walks.  No sugar.  No caffeine. Lots of meat, veggies, avocados and sun-butter.  Resting and saying no to lots of commitments. Simple visits with friends.

Quickly, my circadian rhythm returned and I was sleeping 8-9 hours a night without waking up. I knew that it was a good sign when I started falling asleep at 8:30pm on the couch (even though I missed the Cubs’ win!).

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One of the most difficult things about a flare, is that you are still expected to live in the “land of the well.”  I have a job to do, errands to run, food to make, and commitments to attend to.  But once a flare hits, you feel this immediate desire to return to the “land of the sick.”

Why?

Because that world matches how you feel.

Because your health has been bad enough that you know what a flare could turn into.

Because people who are sick can empathize to a greater degree.

Because you don’t want to feel like you have to defend your actions.

Because you want people to know that your job performance may not look like it’s suffering, but you are saving every ounce of energy, just to get out of bed and go to work.

Because you wished you looked sick, because then people might understand a little better.

 

And yet, I’m also learning that the initial desire to “hide” from the healthy world may be essential for the short term, depending on how intense the flare up.  However, it’s also detrimental in the long run.

Though they may be few, there are  healthy people, who truly do want to understand what it’s like to live with a chronic illness.  So, I’m learning to be honest, with the small, mundane details of being sick, because ultimately this is more healing for me than hiding.  More than anything, I need to know that people still care.  I need to feel believed that my intuition is correct about how my body is reacting, even if I look healthy from the outside.

What flares teach me more than anything, is that healing is still happening.  The steps are small, but they are not insignificant.  I’m still learning to trust other people, even as I trust what my body is telling me.  As I continue to trust other people with my story, I’m choosing to lean into my messy past, and face into when doctors and friends didn’t believe me.

Flares remind me that I’m limited, and that my health is a gift.  My own decisions affect my health, and I don’t just want my health to be limited to the food I eat.  It includes the people on the journey with me.

Those brave people who are willing to say, “I’m walking this journey with you.”

In the Checkout Line

People waiting in line with shopping baskets at grocery store

My greatest learning of the week came simply; they usually do.

I went to Aldi simply to buy kale and tomato sauce and get back home quickly, so I could make meat sauce before going to work.

And in front of me in the checkout line was a man with down syndrome.

He smiled and waved.  He asked me my name and he introduced himself.  He asked if I wanted a hug or a fist-bump.

The simplicity of this encounter has lingered with me all week.  It was sweet, and it marked me.

This man exposed my desire for efficiency, so that I ignore the stranger around me.

He exposed my guarded-ness of the stranger, and my desire just to keep to myself.

A simple smile helped to break down my walls.

And this came from someone who came to Aldi with a care-giver.  He doesn’t have credentials or titles that the world considers fulfilling.

But he lives his life with the simple belief that a once-stranger can quickly become a friend.

As I was leaving, he giggled and said, “I made a new friend.”

I don’t think that it’s ironic that children and a man with disabilities has made me ponder how I think about friendship this week. They naturally cross barriers they don’t even know are there.  They do not worry about their reputation being tarnished.

And they’ve reminded me, that neither should I.