Velveteen

Sculpture at the Dallas Arboretum

 

...nursery magic is very strange and wonderful, and only those playthings that are old and wise and experienced like the Skin Horse understand all about it.

"What is REAL?" asked the Rabbit one day, when they were lying side by side near the nursery fender, before Nana came to tidy the room. "Does it mean having things that buzz inside you and a stick-out handle?"

"Real isn't how you are made," said the Skin Horse. "It's a thing that happens to you. When a child loves you for a long, long time, not just to play with, but REALLY loves you, then you become Real."

"Does it hurt?" asked the Rabbit.

"Sometimes," said the Skin Horse, for he was always truthful. "When you are Real you don't mind being hurt."

"Does it happen all at once, like being wound up," he asked, "or bit by bit?"

"It doesn't happen all at once," said the Skin Horse. "You become. It takes a long time. That's why it doesn't often happen to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby. But these things don't matter at all, because once you are Real you can't be ugly, except to people who don't understand."

"I suppose you are Real?" said the Rabbit. And then he wished he had not said it, for he thought the Skin Horse might be sensitive.

But the Skin Horse only smiled. "The Boy's Uncle made me Real," he said. "That was a great many years ago; but once you are Real you can't become unreal again. It lasts for always."

~Margery Williams, The Velveteen Rabbit

 

from The Velveteen Rabbit

My earliest bookish memories are curled up at my mother’s side (or in her lap) on the scratchy harvest gold sleeper sofa in our den. That couch became the ship that carried us on adventure after adventure together.

 

We bade good night to the moon and the big green room, good night to the mouse and the little red house. Good night, bowl of mush; good night, old woman. (She whispered, “Hush.”)

 

We sailed in and out of weeks to the land where the wild things are. We roared our terrible roars and gnashed our terrible teeth. After the wild rumpus, we retuned to find our dinner still hot.

 

We made way for ducklings through downtown Boston. We folded ourselves into an envelope and traveled by post to visit Flat Stanley’s family. We bemoaned Peter Rabbit’s lost brass buttons and Geraldine Belinda’s lost everything. (Her purse had a hole.) We laughed at Eeyore’s gloom and Tigger’s bounce, and when we had a rumbly in our tumbly we stopped for snacks.

 

Together, in the safety of her arms, we climbed the Alps with Heidi, found our golden ticket with Charlie, rode in Caractacus Potts’s flying car, grew up with Laurie and the March girls. We kissed frogs into princes and sleeping beauties awake.

 

We learned from the Skin Horse about becoming Real, and how it could take a long time, and how it doesn’t happen to people who “have to be carefully kept.”

 

And always, she thought I could, she thought I could, she thought I could, she thought I could.

 

Once I could read to myself, my sisters took the best spots on the sofa. Then read-alouds stopped.

 

In my fifth-grade year, Mom began a new adventure. Somehow or other, she began attending Bible Study Fellowship. In the car or while we worked in the kitchen, she would share with me all she was learning. Then she began bringing study pages home for me to do. It wasn’t exactly a read-aloud. More like a read-along.

 

She began to change and brought a different sort of book home from The Mustard Seed, a Christian bookstore within walking distance of our house. Eventually, the Lord brought me also to Himself and began to transform me. Soon I was reading along with her, or just behind her, books like Mere Christianity, Hind’s Feet on High Places, My Utmost for His Highest, and the classics of Elisabeth Elliot.

 

By the time I reached high school, I had followed my parents’ lead into teaching Sunday school, and Mom had become my companion at concerts, Bible conferences, and retreats. We had the privilege of listening to Elisabeth Elliot and Jill Briscoe speak in person numerous times. She took my sisters and me to see Michael W. Smith and Steven Curtis Chapman in concert, even when it meant staying up way too late on a school night.

 

For the last decade, Wednesday has been our special Bible study day, the grown-up successor to read-alouds. Initially, we went together to the women’s study at our church. When that became too taxing for her 5 or 6 years ago, we moved our study time to her home, with me planning and leading. The last 2 years, even that has been too taxing, so I started a “Mom time” playlist on YouTube. We usually watch videos from The Elisabeth Elliot Foundation or Joni & Friends. She dearly loves watching the Getty Family Hymn Sings recorded during the first year of the pandemic.

 

Now I am the one reading to her from the Bible or from a devotional book. Soon we may return to the children’s classics, the one childhood place that seems larger when I revisit as an adult.

 

This weekend is her birthday. She is not only my mom; she is my best and oldest girlfriend. It is a bittersweet celebration this year. The Skin Horse warned us, but we didn’t really understand how much becoming Real would hurt us, in body and in soul. The very good news is that “once you are real you can’t become unreal again. It lasts for always.”

 

We are both one day closer to Real than yesterday. One day closer to seeing Jesus face to face. I grieve my mom with every newly forgotten memory, every realization that we will never do that again or never go there. But today I still have her. We will sit on her loveseat. We will give and receive hugs. The birthday song will be sung. Tears will likely fall.

 

They will be tears of hope though. Real is coming, and it’s a Realer Real than even the Skin Horse could have guessed. She knows Jesus and I know Jesus. Even as we ache now, we cry our tears knowing that every loss and separation are only temporary, because we have forever together with Him to look forward to. Forever with Him—together. And with Mom in Him and me in Him even now, we can never truly be too far apart, even when “most of [our] hair has been loved off, and [our] eyes drop out and [we] get loose in the joints and very shabby.”

 

Happy birthday, Mom. Thank you for all the books, all the cuddles, all the adventures. Most of all, thank you for always thinking I can and for pointing me to the Real. I love you.

 

Love,

Your Sonshine 

(With grateful apologies to Margery Williams, Margaret Wise Brown, Robert McCloskey, Johanna Spyri, Ian Fleming, Louisa May Alcott, A. A. Milne, Roald Dahl, Jeff Brown, the Brothers Grimm, Hans Christian Andersen, Beatrix Potter, Maurice Sendak, and Marguerite Henry. Thank you for all the adventures.) 

Twelve Years of "crumbs"

 August 7, 2022 marks a dozen years since my first blog post. Thank you for sharing some of your precious time and attention with me here. Your companionship along the journey has brought beauty and joy to my life. 

A Mississippi Kite calling from atop our neighbor's Italian cypress

The Thai rheumatologist looked at my husband. “Culture shock,” he said. “There’s nothing wrong with her but culture shock. Just push her through the first year or two and she’ll be fine.” At my husband’s side, I was too stunned for words. Could that really explain all the strange things happening in my body? Was it all in my head? 

 

Three years prior to that conversation, I met my Amore at a missions prayer meeting at our Bible church. We discovered we were both students at Dallas Theological Seminary preparing for missions. At school we became friends, then more than friends, bound by love of the Lord, good books, worship music, and teaching the Bible cross-culturally. When he proposed to me, we knew he was heading to the mission field soon, possibly within 6 months; we decided to marry before that so we could learn the culture and language together. Everything about our courtship, engagement, and newlywed life served that goal. We purged our belongings and only registered for the bare essentials needed to function in our apartment until we moved to Southeast Asia. In reality, our preparations took a year and a half, during which we traveled frequently, building our support teams, training church leaders at home and abroad, and visiting family we would not see for several years. We also spent dozens, maybe hundreds, of hours at coffee shops, mentoring younger friends, writing for our ministry newsletter The Rose Garden Gazette, planning Bible studies, or relaxing together. We took in as much beautiful green space and live music as we could, stockpiling memories for life on the other side of the world. 

 

One unexpected challenge was obtaining health insurance with international coverage. During our engagement I had lost 25 pounds (10 more than my doctor preferred); a prior endometriosis diagnosis had required one surgery but was well-controlled; and my blood pressure was chronically low. My diet was as healthy as we could afford, though, and I ran or walked several miles six days a week. That preexisting chronic illness brought refusals from company after company until the very last option. They accepted us, and we accelerated our preparations for our move to Bangkok for the first four or five years of the rest of our lives overseas. Meanwhile, my fingers had started turning blue when I was cold. I knew that was called Raynaud’s phenomenon, but nothing else seemed wrong, so we plowed on towards our calling and dream. 

 

In 2001, we moved to downtown Bangkok. We learned public transportation and navigated unfamiliar streets and menus. We enrolled in language school and joined a church. Culture shock brought many tears, quests for familiar foods and quiet garden spaces, long sessions alone with God and my books, and computer-gaming sessions for my husband. That was normal. What was not normal was that my fingers continued to turn blue; my hands often hurt; I ran a low fever for hours daily; my pulse raced; I couldn’t climb the stairs to the Sky Train without help. Then the vertigo began. Without warning, the room would suddenly spin like a top set in motion. That was the first symptom that really scared me. 

 

We found an internist who spoke fluent English. She drew vials and vials of blood and determined liver and inflammation markers were very elevated. Combined with my symptoms, “It might be lupus,” she said. “You need to see a rheumatologist.” The rheumatologist ran more tests and diagnosed culture shock, without explaining the persistently abnormal tests. Not satisfied, we kept returning for more tests, asking physicians stateside what to request. Hundreds of people around the world, from our church secretary to a visiting Anglican bishop, were praying for my healing. To all appearances, things were getting worse, not better. 

 

“Fibromyalgia,” the rheumatologist said with a wave of his hand. “Nothing you can do.” Research showed us the definitive symptom was specific tender points throughout the body. Which I didn’t have. We consulted a neurologist. He ruled out brain-based causes of the vertigo and echoed the first doctor, “All your symptoms look like lupus. Your labs don’t fit the textbook profile, but if it quacks like a duck….” By that time we had already reached the same conclusion and were taking steps toward returning to the United States. If it were lupus, it would be lifelong, and we would need our community for the journey. Also, Bangkok was replete with the environmental lupus triggers. 

 

My husband faced the choice of sacrificial faithfulness to our marriage covenant, to love and serve me like Jesus, or his vocational dream from long before we met. In perhaps the noblest decision of his life, he chose me. He laid down his felt calling to keep his marriage vows. 

 

That kind neurologist provided basic care until we moved back to Texas. At our first specialist appointment after returning, the day before my birthday, the new rheumatologist told me I did indeed have systemic lupus erythematosis (SLE). We began treatment with several prescription medicines, and my physical health slowly stabilized. 

 

Emotionally, however, we were broken, ashamed, and disoriented. We were the regional team leaders for our mission organization, with several other aspiring missionaries preparing to join us overseas. Our hard choice affected their futures too. The missions program we worked for had no employment opportunities for my husband in the home office, but God provided through a previous employer who created a technology position especially for him. We were grateful for that gift and also struggling to get our feet under us after this huge plot twist. We faced overwhelming grief, but family and the quiet worship of our new church home helped us through. 

 

One characteristic of autoimmune diseases, unhappily, is the flare and remission cycle. After approximately 7 years of medication-induced remission, a surgery destabilized my lupus. Out of the blue, intense chest pain leveled me. Any pressure on my sternum at all was agonizing. Breathing hurt unless I lay down on my side. For many sofa-bound months, fatigue was so debilitating that I texted my mom before and after I showered so someone would know if I passed out washing my hair. During that laid-flat season, this blog began.

 

By the time my rheumatologist found a medication that helped the chest pain, other joints chimed in, one after another, like petulant children demanding attention. At our wits’ end, we sought a second opinion, and “undifferentiated inflammatory arthritis” was added to my chronic illness portfolio. The new doctor felt that joint pain had become too prominent a symptom to be attributable to lupus alone. A few more specific arthritis labels have been considered since, but that big umbrella diagnosis is enough to access care. 

 

Chronic illness has taken so much from me: health, hobbies, exercise, friendships, a church community, family time, special occasions, independence. My invisible illness has often left me feeling invisible. Most painful of all was the loss of my husband’s and my shared vocation, the only thing we wanted to do, the thing we believed God called us to do. 

 

But that’s not the whole story. Chronic illness has also given much. Rather, through chronic illness the Lord has given much. 

Through chronic illness, God is teaching me courage by leading me straight into my biggest fears and showing me I can survive them because the Lord is with me.

Through chronic illness, God is teaching me perseverance by placing me in a difficult situation where all the emergency exits are locked. In accepting this and looking for good even here, I am learning to find peace and trust God’s goodness.

Through chronic illness, God is teaching me gratitude by putting entitlement to death. No one appreciates simple pleasures like the person who endures extended periods when they are out of reach.

Through chronic illness, God is teaching me the humility of saying on a daily basis, “I can’t do this. Will you help me?” In a do-more, climb-higher, run-faster world, arthritis and lupus slow me down and force me to discern what is really mine from the Lord to do.

Through chronic illness, God has tenderized my heart toward the pain of others. It is easier to weep with those who weep and rejoice with those who rejoice, and broken hearts seem to find safe harbor with me. My shattering has made room for the shattered stories of others, and there are so very many shattered souls who need shelter.

Finally, through chronic illness, God has given me new friends and purpose through the blog my husband helped me start at one of my lowest points. Chronic illness took me from one mission field and opened a new one. 

 

If you, dear reader, are facing a new medical diagnosis or waiting anxiously for one, grieve your losses when they come. They matter. Grief honors that. Chronic illnesses take much from us, but they give unexpected gifts to us too. May you face your plot twist with eyes wide open to both and courage to face them. Life will never be the same, but it can be good and beautiful again, through the providential care of God. His grace really is sufficient. May you know His power in your weakness today and always. 

 

Courage, dear hearts.