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.