A Candid Discussion of My Faith, Health, and 2013

In the beginning I felt a deep anger towards God. How could he let this happen to me? Why hadn’t he intervened? My anger was a spray covering everyone whose lives seemed healthy and easy

Eventually that anger turned to fear. I wrestled intimately with questions I had worked out theologically. Had I lived a life worthy of sitting at the feet of Jesus? Was heaven real? Had my faith been misplaced? I remember cowering on the floorboard of my car in a random neighborhood, feeling so lost and small. If God had overlooked me, who then could see my suffering?

In late 2007, I came down with a sinus infection that never went away. I began to faint and see stars. My breathing was labored despite an active lifestyle. Getting out of bed was a chore. After more than 12 rounds of antibiotics and a half dozen referrals I had begun to despair I would never breathe normally again. I began to see increasingly more distinguished and expensive doctors. My pain grew unbearable and the little bag of tissues I constantly carried around with me became a monthly bill. Eventually, I was given a diagnosis - Churg Strauss Syndrome. It was serious.

I was sent to a local specialist who began me on a daily regimen of the beast, Prednisone, a bitter foe and dear friend. My medicine cabinet which previously consisted of Eucalyptus oil and bandaids was taken over by chemotherapy medicine and an army of drugs to help me manage the effects of the medicine regimen. I lost touch with my own body. Its cues were now too complex for me to treat at home. I couldn’t tell if a sore throat was a little tickle or the beginning stages of pneumonia.

My job became to rest. Turn over all of my responsibilities and focus on the difficult work of reaching remission. I had joked every day for years that I wished I could slow down and nap, but I always knew it wasn’t true. I thrived on usefulness. Running circles around others mentally and physically felt like a calling. I soared at it. I volunteered 40+ hours a week, mothered my children, worked both in and out of the home, and still found time for profitable hobbies. My self-worth had wrapped itself like a pernicious vine around the god of productivity.

God stripped it all away.  A small voice asked me if I was still valuable to Him if I could give nothing. Oh how I wept! I couldn’t accept it. What value could I have lying in bed alone? As I faded from the foreground at my church, the phone calls and concern quickly tapered off. I was deathly ill and completely alone. With nothing to give, I began attending a new local church and I worried that people would think I was a newcomer to the faith. I felt the need in casual conversation to give a resume of my good deeds and drop names so people would know I was important - that I wasn’t a leech draining the resources of the church.

I don’t remember when pride became such a dogged friend. I couldn’t shake it. As I worked less and my husband had to take time off work to care for me, the medical bills began to pile up. Our credit card became a way to survive another day. To my surprise and embarrassment my new church reached out to help alleviate some of our medical bills and stress. If they hadn’t surprised me I don’t think I could have accepted it. I wasn’t humble enough to receive benevolence. I had pulled myself up by my bootstraps since I was a 15-year-old runaway. I didn’t want anyone to have a hand in the success of my life. I couldn’t face the reality of now needing the fellowship of believers.

I could admit to needing grace to cover my sins, but not $200 to put food on the table.

I am now six years into a disease that kills half of it’s victims between 5-7 years. I am no closer to remission than when I first began.

I pass by you at the store and at church stumbling through my day with ringing ears, intense aching pressure behind my eyes, weakened limbs, and nerves that tingle and burn through my arms and legs. Most days my lungs squeeze like a python depleting it’s prey of life.

When people ask me how I am, I smile and find a way to spare them the horrid details of nights spent vomiting, hair that is brittle and falling out at the slightest touch, lying in a puddle of my own tears or bodily matter because the chemotherapy has so wrecked my body I can’t stand or take care of myself. I dress to cover rashes and sores, not to mention the weight of five straight years of steroid therapy. I carry tissues everywhere to mop up mucus and blood that erupt involuntarily from my lungs. There are days when the pain is so great I cannot bear even the sweet smiles and gentle whispers of my children.

Disease has created a deep dark hole that I must face completely alone. In this darkness I have found two things - myself and God. The fast pace and over connected tailspin of my life left little time for deep reflection and even less energy for listening to a God that I could not see or touch. But in the darkness and void, it was quiet and still. I could hear my own worry. I could sense my own exhaustion. I began to hear again another voice speaking to me. My busyness had drowned out the voice of my creator.

I was left with the choice to continue trying to cover up my innermost thoughts, to dress up and excuse my jealousy and fear. I could frantically paint a veneer of righteousness or unclothe my sins and stand before Him exposed. I obsessed over the question, why me? Tenderly, I would hear why not you? Would I stumble and faint from pain? Could He be good and let me suffer? Disease is a curse we have brought upon creation by the sin of mankind, nevertheless the daily agony feels very personal.

In this place, I finally shed the lie that my salvation or goodness had anything to do with my own vain efforts. God had freely given me grace when I was a 16-year-old homeless punk and still loved me as a broken body unable to give anything in return for his grace and love. My value comes from being created in His image and redeemed by His wild and freely-given grace.

Eventually, I turned my heart to living the life I’ve been given. I culled the ministries to which I give my time. First and foremost, I serve my husband. It involves a lot of listening, laughter, patience, and keeping our home in order. I dug deeper into my role as a mother and try to be a woman they will admire and an example they can follow. There can hardly be a better example of patience as I grit my teeth through a migraine and sing along with their nursery rhymes or walking them to the park short of breath and dreaming of my pillow. I divide the rest of my time between my closest friends, my church, and making pocket change when I can.

Mostly now, my work in internal:
I lay down my sins.
I pour out my fears.
I cough up my anguish.
I weep for lost strength.
I mourn my plans and my health.
I dream of heaven.

I see His kingdom in the bowl of hot soup delivered by a friend.
I sense His compassion in the knowing hug of the chronically ill.
I feel His tenderness as my child wipes hot tears from my eyes.
I know His faithfulness through my husband who walks beside me in suffering.
I am comforted by the sincere, nightly prayers of nieces and nephews.

God gave me this one word for 2013 - MOURN, and oh how I’ve wept! I've choked on my loss. I've grieved and wailed and screamed and torn my pillow open with the gnashing of my teeth.

Last December to this one were absolutely wretched. My body burned from chemotherapy. It swelled and ached from steroid therapy. I lost a job that I poured everything into. My spirit was crushed by people I counted as friends before their true character was revealed. I had to draw more boundaries. I had to give up more things and accept less invitations. I have had to learn to be content with less in most areas of my life. It has not been easy, but I am no longer angry. There were moments I begged for relief from my pain, longing for Jesus to take me home.

It may not be pretty, but I will declare what I know to be true -

He has not healed me, but he has not abandoned me.

My life is not perfect, but I am blessed.

His praise will continually be on my lips. I have a sweet peace. One day I will see Him with my own eyes. I will touch his scars. I will drag myself before him and kneel with this broken tired body, and He will make me whole.

I am looking forward to 2014. In Christ, there is more to live for than ever before. I love my friends and I hope that you will bear with me as I press on towards the goal God has called me heavenward in Christ Jesus.