sickness

Expectations vs reality.

Nearly two months ago, I slipped on my glitter heels and swiped my badge for the last time. I was a big girl with a big girl job.

Choosing to resign with little savings and no further plan is not exactly trendy. I wouldn't encourage most to try it out.

Treatment has been monotonous and mainly uneventful. Some lovingly ask if I feel better yet. I don't. Activities the average young adult can tackle in a day are physically taxing for me. Monday, I caught up with a friend. Tuesday, I ran errands for an event. Wednesday, I made a meal. Normal life stuff.

After something as simple as showering, I feel like the big bad wolf in "The Three Little Pigs." My lungs huff and they puff. Tweezing my eyebrows is a task large enough to set my heart racing. I am exhausted by 11 am, when all I've done is gotten ready for the day. 

You might be able to relate.

But maybe you have all the energy I wish I had, and I have all the time you wish you had. Even then, we are probably quite similar.

We don't always get what we think we need. In one way or another, we look in the wrong places for security or regained hope. We are humans, and that's what we are prone to do.

I've got a knack for unrealistic expectations.

Monday, Tuesday, and Wednesday were my stark reminders this week. I know when I've pushed myself, because the pain is always worse the next morning.

I thought a diagnosis and a treatment plan would bring the answer and stability I wanted, but I was wrong. If I am not constantly looking to Jesus, I will always be disappointed.

I am learning healing on earth has not been promised to me by a certain date. It is not something that has a due date, like a library book or a baby.

God does not owe me anything. He has given me everything I need.

Some days, that is very challenging to reconcile with. Other days, I am so full of peace, knowing He is more than enough for me.

God is not a fulfillment service, shipping out our orders and delivering them on our time. We may not understand His ways, but we can stand under His truth. Day after day, He will meet us in our weaknesses—whatever our portion may be.

So, this is where I'm at.

It's not what I thought, but it has been the best for my growth. I am thankful.

On 2015 : Scattered Piles

At the end of each year, I like to choose a phrase to summarize the previous 52 weeks well. I couldn't think of one this year.

2015 has not been sorted through and folded like fresh laundry. You will not find it stacked one atop the other or put away in its appropriate drawers. In fact, much of 2015 is still strewn across its metaphorical floor - in scattered piles. Some parts clean, some parts messy. 

Today is January 1, 2016, and my day looks like it did last year (yesterday). I slept in late, curled up with a book, and spent most of my time in bed.

I love how the dawning of one day can bring so many people together in reflection and celebration. I love that this day is today.

But for me, the effects of 2015 still run deep.

I haven't finished up a journal and lined it on my shelf. I haven't thought of all I want to do or accomplish, and I still haven't found words to describe what the year I just walked out of was like.

Writing helps me process, so here's my best attempt.

- - - - -

the red leather couch.

While living in Kona, I spent a lot of time on the red leather couch in my apartment.

Naps, meetings, game nights, prayer times, and Netflix all happened around it. When I sat there the fourth Sunday of March, ranting to my dear friend and roommate, I didn't really expect anything out of the ordinary.

I shared with her about the Lyme Disease forums I found that afternoon. She patiently listened, as she is so good at doing. I went on, telling her about how unintelligent I had been feeling lately due to these cognitive symptoms, and how glad I was to now have something to justify my feelings of stupidity with.

My friend, in all of her love and wisdom, did not let me go on.

In no more than thirteen words, she called me up out of myself and into truth. She firmly believed it was time for me to stop caring what people thought.

Until then, I lived dictated by (what I assumed were) the opinions of others. I was mostly wrong in my assumptions, but I feared it nonetheless.

I believed I had to show people I was some inspiring missionary who braved sickness and ministered effortlessly through her pains. I felt that people had to know all the details upfront, before they had a moment to judge me. 

April's words changed my life that night. I don't know if she knows that, but they did.

If there is something I have been learning since then, it's that I don't have to prove myself to anyone. At the end of the day, what God says and thinks about me is what matters most.

over curry & ice cream.

"I wanted to see the hands of God, but I saw His face and everything was changed." Our new Nepali brother and sister gathered around our lopsided table in Kathmandu, encouraging three of us missionaries.

We came to Nepal to help provide relief after the recent earthquakes, but were each struggling with ministry. The seven weeks there looked nothing like I thought. I mean, nothing.

The bowl of rice made its way around once more. They continued to share about the importance of walking in faithfulness to God.

Ministry is not about impressive stories or a pressure for testimonies. It's not about "success." It's about seeking God, and Him alone. We do not love and serve Him only to gain something in return, to email a catchy newsletter back home, or to be seen as more righteous in the eyes of men.

I almost forgot that.

Then God graciously brought this couple into my life.

They are desperate for God's presence. They long to obey Him, no matter the cost. After lunch, they asked to pray and seek Him together. We cried out to our Father, as new friends who became family over coconut curry and little scoops of ice cream. 

Ministry will sometimes take an unexpected turn. You may be told you are no longer needed. Or, you may be told there's so much more you must do.

These two helped me remember it is God we are to follow—not a manmade dream or expectation. 

resignation letter, part II.

As written in my last post, after tiresome transitions and demanding decisions, I stayed in Florida. I was rehired to work in finance for an amazing company, and finally put away some money for my savings. Financial security and benefits sounded real nice.

But I resigned for the second time just as I passed my first 90 days. As I typed together that letter, it all felt like a joke.

The week of my last day, I flew up north to begin receiving treatment. My new doctor told me he expects me to get well—words I have never heard during an appointment before. 

I don't even like using the word sickness anymore. I don't like denying it, but I don't like paying it much attention either. Yet it's there. It's there, marked up on the six medical forms I had to fill out. It's there, even when I "don't look sick," and it's affecting my life.

I made the decision to quit my job, use my savings for treatment, and take time to recover.

I have no idea what this will look like or how long it will take.

I have been launched straight into a word that aggravates my people-pleasing, perfectionist, performer penchant: rest.

There is no specific revelation I have arrived at here.

I have not mastered the art of handing burdens over to God, or not worrying about anything. There is still so much I do not pray about, or do not give thanks for. He is still weeding out the selfishness in me, the fear of being honest, the deceiving suspicion He might change His mind about me.

- - - - -

2015 holds piles here and there of stories, lessons, and memories. Many of them.

It was the year a lot was taken away. I still grieve the losses at times. I can't help but think, the removal of something gives way for something else.

My hope and prayer for this year is not for more achievements or doings. Those may happen. But I don't want to hold to the comforts of relationships, ministry, financial security, or anything else. 

I want my life to be so open to God.

I look forward to seeing how He meets people like you and me in the midst of our chaos. God, who brings order to the scattered piles. God, our peace in the storm. God, to whom deserves all the glory. He is always kind.
 

"So we do not lose heart. Though our outer self is wasting away, our inner self his being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal." - 2 Corinthians 4:16-18

Invisible in illness?

If you have depression, mental illness, infertility, lupus, lyme disease, fibromyalgia, chronic fatigue, arthritis, or any other invisible illness I did not listI am so very sorry. I know what it is like to carry around a weight that most people cannot see. That feeling of being constantly misunderstood, isolated, or angered? I get it. I have been there. And in many weeks like the last, I am still there. But I am fighting for perspective.

It's been about 180 weeks since my health began to decline, and I still don't know what actually is amiss. Chronic, undiagnosed, invisible. I am finding it is not as uncommon as I thought. (well over 100 million in America alone have an invisible illness.) 

Doctors have reviewed my negative test results and leaned forward in their chairs to tell me, "Ma'am, there is nothing we can do for you." Some have alluded to me making up the symptoms because they believed I craved the attention. One doctor told me he would "pound anti-depressants" on me during my next visit to help me cope with the frustration of not finding an answer.

The pattern has remained the same. They see nothing, so they give up. In my case, the illness and its diagnosis are both hidden.

It makes me feel crazy.

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I live with an unwanted illness.

But I also live wanting a pinpointed diagnosis so I could move forward with a treatment plan. So I could feel validated. Oh, to have an answer! A result of some kind!

I've often imagined the relief that would wash over me as I finally learn what the heck has been going on. To me, an answer would somehow prove this is all real. It would legitimatize the symptoms and my constant justifying could then cease. At least that's what I imagine.

This illness crept into my life summer of 2011 and has since bulldozed through my once-neatly-packaged views on God, relationships, purpose, and even myself.

It might be invisible in nature, but its effects have greatly impacted me as well as those close to me. My selfish and prideful ways have never been more highlighted than in these 180 weeks or so. I never knew self-pity could taste so gross or that I could be this headstrong in my distorted game of negativity. For something so invisible, such deep issues have surfaced.

Perhaps it sounds nonsensical, but somewhere along the way, I placed myself under the label of "sick girl."  In my naiveté, I allowed the lies to grow and confirm the preposterous belief that invisible illness meant invisible girl.

I thought I was doing myself and others a favor by isolating my emotions, thoughts, and even physical presence. Then came Christmas break in Virginia two months ago. I visited my best friends whom I had not seen in about a year and a half. During this trip, my cognitive symptoms experienced a flare up, which means conversation, comprehension, and retaining information expended the little mental energy I did have. In addition was the usual fatigue and chronic body pain which made me feel like I had piggybacked an elephant all night long.

I was only beginning to pull out of a long, emotional funk. Just the thought of inviting them into this mess freaked me out. I sat in the passenger seat as my best friend drove us from lunch when a certain thought riveted me. Maybe I should tell her. Maybe I should tell her what it's really like for me to be sick. I beat myself up for a good while, clenched my hands, and finally mustered up the courage to share. I had predetermined that even best friends wouldn't really care to know. If they did, wouldn't they have said something first? It turns out, she did care and has cared. She just needed to be guided into how I felt so she could try her best to understand.

As people, isn't that what we desire? To be recognized and embraced even in our mess? Whether it's illness, a job loss, an addiction, death, heartbreak, or whatever elsedon't we just long to be assured that we have not been forgotten? That what we experience matters? 

Although my best friends haven't experienced this themselves, they've been through plenty of painful situations which stole their joy, masked their identity, created feelings of shame and isolation, and kept them from speaking up.

We have suffered through our silences.

What I was told that afternoon meant volumes to me. She completely validated my illnessI was not crazy after all. Following that, my friend sweetly said, "Erika, I don't love you because of how eloquent or fun or intelligent you are. I love your heart and who you have been all of these years. It doesn't change." 

I don't want people to only know me from a distance. I want them to come close. I crave for them to. It has been a painful process to see the lies regarding my worth uprooted and to plant seeds of truth instead.

Like I mentioned earlier, just this week I felt misunderstood, isolated, and even angered. When I find myself feeling that way, it's usually because I haven't opened myself up to the truth or to the vast graces of God and the way He moves through His people. 

Yes, my sinful ways have never been so highlighted as they are now. But neither has the grace of God. The way He extends His love towards me is something I feel I do not deserve. His grace, His gift. The way He tells me I am enough leaves me in awe. He notices my every need and cherishes me more than even the best of friends could. I've never seen this part of His heart more visibly than now. He is whispering,

your illness may be invisible, but you are seen.

And maybe you need to hear that, too.

Through your angry days, your hard days, your painful days. Through the blood tests, treatments, medical bills, lost relationships and many "but you don't look sick" comments.

Through all of this, you are seen. You have not been forgotten. Your every need is fully known by God, who so desires to empower you with His strength. 

May you be open and allow His whispers of truth to fall afresh over your heart. And most of all, may He, the God who created you and your beautiful body, restore you wholly and completely.

His affection in affliction.

Sometimes I write to make more sense of my life. It's how I process.

Other times I write because someone else needs to hear it—even if I'm unsure where it will go or what I will say. Kind of like right now.

I know I've been given a voice to communicate truth and must stop shying away for fear of being misunderstood. As I write, I like to pray God would take these simple words and breathe His life over them in a way that is uplifting, because I can't write through any season without Him. It just wouldn't be worth it.

. . .

It's not right for me to expect you to understand what I will share. That's just not how it works. But I do want to honestly explain where I've been in my pain and limited perspective so I may then speak of God's perfect and personal hope.

There are afflictions of different kinds in life. Mine has been physical distress—sickness, in other words.

Every morning, before I hop off my bunk bed, I face the reality of my weakness. Regardless of the sleep I get the night before, I rarely wake refreshed. Since spring, I think I've slept through the night once.

Chronic fatigue is a tricky little guy.

After using what little energy I have to get the day going, I take a quick assessment of my inflammation, fatigue, and joint pain levels. On the worst days, it feels like I'm piggybacking a baby elephant. (I've never actually done that before... but I imagine it would be similar.)

As I apply makeup, I fight against insecurities that appear, hoping people don't notice my face worn with exhaustion.

When I arrive on campus, I get slightly anxious because I know many will ask in passing, "How are you? How do you feel today?"

How does one with chronic sickness honestly answer without being such a Negative Nancy? Did they care to actually know? Unless I'm piggybacking an elephant, I ignore my health altogether and give a cheap answer.  

But if my recent, uncut thoughts were held to a microphone, my response would be:

"Well, I slept for ten hours last night but I'm crazy tired! My body hurts everywhere—and I don't know why. Especially my hands. I tried taking notes and typing earlier, but my fingers are so swollen from arthritis I had to stop. I'm freaking out inside, hoping you don't ask me what I did yesterday. I probably won't be able to remember because of my poor memory. And as much as I love talking to you, conversations drain me. I'm trying not to slur my speech or show how disappointed I am. I know I could have it worse. I know God is good. But today? I feel like crap."

This is the negative, prideful perspective from which I've been living out of until mid-August. This was my reality. The painful truth.

Then, I was shaken up, and there was no stopping me. 2+ years worth of disappointment, embarrassment, questioning, and fear poured out of me in the form of weeping before the Lord.

To this day, the dried mascara stains on Psalm 73:26 serve as proof of what happened that August afternoon. I told Him I couldn't do this anymore. I couldn't hoard all of these wrong feelings, shutting myself off to the door of hope.

If I was going to be weak forever, I had to believe the Lord would be my strength forever. He promised He would. 

When the answers to our prayers are delayed, and our circumstances reach emergency proportions, God uses the crisis to break us open, to empty us of everything that is not of Him, and to soften the soil of our hearts with tears.
- Bob Sorge

Following that time of weeping and surrender, one might imagine my health got better. It didn't. I had more days of feeling off, my physical pain was heightened, and it actually got worse. There was this tension I was living in.

I recognized my reality, but I knew Heaven's perspective carried something I could not see and I wanted to set my heart on that instead.

After a particularly difficult week where I never left the house, my dear friend encouraged me to read one of her favourite books, The Fire of Delayed Answers.

It is through Bob Sorge's personal lessons from pain I am now gaining a perspective on affliction I have never had before. Instead of complaining this all away, my eyes are being opened to the mercy of God to me. Although my prayers for healing or immediate relief aren't being answered, I am being given great grace to persevere. 

I know I am just at the beginning.

I have more valleys to grow in and out of, more mountaintops to traverse. But there is nothing quite like the moment hope expands in your heart as you lean on your Father, refusing to give up in your suffering. (Romans 5:1-5)

I have found His deep affection for me in this affliction, and there is no turning back.

Blessings in sickness.

hand.jpg

Since Friday afternoon, I have been thinking a great deal about living with health challenges. 

I had just returned from an appointment with a new endocrinologist and had a nicely bruised left antecubital space to prove it. (I learned that word seventeen seconds ago when Googling "opposite side of elbow.")

This visit was vastly different than most. It was the first in a long, long time where I felt the doctor was not only willing to work with me, but desired to. As she listened to me recount my symptoms in the most drawn out fashion, I saw tenderness in her eyes.

Unlike the doctors who told me last fall there was nothing they could do for me, she carried herself in a way that proved her desire to help.

"This is my problem to fix," she whispered gently. 

Immediately after her exit, I sat in the waiting chair with little happy tears dotting my cheeks. In my struggle for good health, there are two things I have consistently appreciated: someone who listens and someone who seeks to understand.

She had done both. Suddenly, I did not feel so alone in this. 

On the drive home, I thought about people who endure sicknesses of all kinds.

I thought about the selfish and devious twists self pity adds to life. I thought about how I no longer want to be a part of it regardless of my physical state. I thought about a lot of things, much of which is irrelevant to what I am trying to say.

That same day, the day of many thoughts and moments of rejoicing, I purchased an eBook, "Believing is Seeing," written by Laura Lawson Visconti. I think, perhaps, she is the reason I write this post tonight.

Laura is a remarkable creative (artist, writer, speaker) who is losing her eyesight due to a rare degenerative condition of the eye.

As I read through the fifty-five pages in one sitting, all that once seemed so mysterious actually made some sense. Although our journeys differ in magnitude, she spoke a language I could relate to. Again, I did not feel so alone.

She writes:  

Here is the difficult truth I have come to believe with every ounce of my being: He is not concerned with my comfort as much as He is concerned with my heart. This took a very long time to understand, but now that I get it, I can laugh at the negative implications this disease has on my life and instead be grateful for the blessings it has fostered, for the voice I am blessed to have.

"Grateful for the blessings it has fostered." 
The blessings. Because in all things and in all seasons, there are blessings. 

SOME BLESSINGS:

  • Being able to take life much more slowly, enjoying the drawn out moments.
  • Returning home for 1+ year with my family and growing together.
  • Challenging myself in creative pursuits thanks to beautiful, online friendships.
  • Waking up every morning knowing that God's strength will sustain me.
  • Beginning to identify with those who are broken, sick, and pained.
  • Questioning and seeking – because it has only brought me closer to Truth.
  • Learning to cook food that is healthy and nurturing.

These "blessings" used to have negative connotations to them. (i.e. returning home was once so bittersweet because I believed it meant I was too weak to be involved on the mission field). But slowly, my perspective is transforming.    

I see pieces from Laura's life now  and can't help but be encouraged at the way she continues to live with grace, humility, and freedom.

This struggle with sickness is not to withhold me from living fully. No, it is the stepping stone to bring me into the fullness.

Through it, I am becoming more aware of my constant need for my Savior. It's okay to be a little bit weak and a little bit broken.

In fact, I think it's the best place to start.