My relationship with my oldest has always been rocky. My personality and hers clash, and days go by when the strongest emotion I have toward her is frustration or anger. We don’t just butt heads, we lock horns and get stuck that way, pulling and pushing at each other, swaying back and forth, trying to win some meaningless point. At other times, my penchant for absorbing and internalizing others’ emotions combines with her intense emotional reactions to produce a downward spiral where I automatically try to shut her down to protect myself, and her reactions escalate as she feels more and more unheard.And if I die, will that be what she remembers? She won’t know how much I love her, the good and the joy I see in her, if I don’t tell her. If I keep it inside, and instead carp on her messy room or the nth time I’ve asked her to do something and she loudly resists.
The fear of death, for me, has always been the fear of leaving things undone—of things unwritten, of things unsaid, of potential wasted.
Peter wrote to Christians suffering intense persecution in Rome. And within these two letters, I found a perspective on suffering that I had not really thought about before, that I suspect today’s comfortable Protestant churches don’t emphasize much: that suffering is part of life, and that it brings us into closer fellowship with Christ.
“12 Dear friends, do not be surprised at the fiery ordeal that has come on you to test you, as though something strange were happening to you. 13 But rejoice inasmuch as you participate in the sufferings of Christ, so that you may be overjoyed when his glory is revealed.”
Peter (and, in other books of the Bible, Paul, too) talks about suffering as a privilege, even advising his readers to take joy in it. And Peter managed to make this comfortable 21st century girl long for the closeness with Jesus that he said came with suffering. What did those first-century Christians know and understand, that I do not?Around the same time, I started reading Crazy Love by Francis Chan. I felt called to go deeper with Christ, to stop piddling around and making excuses, out of fear and mistrust. To trust God more, and worry less.
I wasn’t sure where this was going to lead me. I did volunteer to teach an ESL class at our church—it fell suspiciously just within the 3 hours that my younger daughter was in preschool, and I thought, well, it was one small step toward sharing the gifts God has given me.
It worked. It didn’t restore full normalcy, but it reduced symptoms to the point that I felt no need to try the sample drugs the doctor gave me.Around the time of the colonoscopy but before I started the autoimmune diet, my neck and hands reddened and started itching. I wondered if I was reacting to some substance connected with the colonoscopy, the anesthesia or prep meds. I waited for several weeks, hoping the autoimmune diet and/or time would heal it. Even as my digestive issues improved, the rash only got worse.
My primary care doctor said I had eczema and gave me a prescription for a steroid cream. I faithfully used the steroid cream, but it didn’t do much good. My hands, particularly, got worse and worse. New patches started. I made an appointment with a dermatologist.On December 26, the family went on an outing, and I went to the dermatologist. I expected a diagnosis of psoriasis or some more severe form of eczema, maybe some stronger cream or insight into what could be causing what seemed like a prolonged allergic reaction. What I got was a physician’s assistant saying “Hmm. That’s interesting,” and then calling in the doctor. In less than 5 minutes, the fast-talking dermatologist ordered two skin biopsies and a blood panel, and kept saying a very long word that started with “derm”.
“Does autoimmune disease run in your family? Are you having any muscle weakness, trouble going from sitting to standing? Any trouble swallowing? When did this rash start?” And then just before he blew out of the room like a small tornado, he paused. “Can I take a picture of your hands with my cell phone?”
I looked up the two diseases the dermatologist had mentioned. Lupus I had heard of. Dermatomyositis I had not. From the attitude of the doctor, I gathered that he was pretty sure that dermatomyositis was the diagnosis. I started researching.
And that’s when the fear returned. This disease, unlike any of the medical conditions I’ve been diagnosed with over the years, is life-threatening. It is also an autoimmune disorder, cause unknown, cure nonexistent. The treatment is basically the same for all autoimmune diseases: suppressing the immune system in an attempt to stop the body from attacking itself. As a bonus, dermatomyositis is rare. About 50,000 people in the U.S. have the disease. In this “flavor” of autoimmune, the body attacks its own muscles and skin, causing a distinctive rash as well as possibly severe muscle weakness throughout the body. It can also attack the lungs, causing irreversible damage.In the two weeks between that first visit to the dermatologist and my return visit to get the test results, the slight stiffness and pain in my hands—which I had previously attributed to my occasional bouts with carpal-tunnel or repetitive stress symptoms—became much worse. The muscles in my arms and legs felt sore, like I had just completed a hard workout. I fumbled with my younger daughter’s car-seat straps, needing two hands to press the release button, and sometimes multiple tries, where before I had needed only one hand. I started doing more things with my left hand, as my right hand was weaker and more painful. It was like I developed arthritis in my hands overnight.
I kept feeling like I was about to catch a cold—a tightness in my chest, the urge to cough. A sense of utter fatigue, coming unexpectedly like a wave.
But it was the fear, the sense of urgency, the sadness that came with thinking my life had just shortened, that caused the most pain. I half-joked to my husband that I was having an existential crisis. That hokey evangelistic question that starts out, “If you died today…” became real to me in a way I’ve never experienced.
No, what scares me is what I have left undone. Have I told my husband, my kids, “I love you” enough? Have I acted like our kids are God’s gift to us, or have I too often treated them as nuisances, in the way of my running mental to-do list? How many times have I sighed when my 4-yr-old said “Mama, can you play with me”? How many times have I lost my temper, and do they outweigh the times I have remained calm? How often have I snapped at my husband because something went wrong in my day? If I died today, how would my children remember me?Because here’s what happened when mortality hit me in the face, in the schedule-free time between Christmas and New Year’s: my long-held dreams/intentions of writing a novel or restarting my freelance editing business got a few scant thoughts, and my focus sharpened to the people in my life. My kids most of all, since the worst part of being afraid for your life is imagining your children growing up without a mother.
And I realized with a shock that—even if I still have 40 or 50 more years to live—it’s time to stop fooling around. It’s time to take risks, to stop caring what others think of me, to stop trying to please my demanding inner critic, to start caring more and more deeply about what God wants for me. To actually do something with the gifts God has given me. To open myself to the Spirit, to really, truly trust God with my life, with my family’s lives. To push aside the fears of not being enough, not doing enough, and break through to just being who God created me to be, to do the work that God created me to do.To be authentic, with my family and with my writing. Because those are the two things I know for sure that God placed me here to do. It’s easy for me to get caught up in that running to-do list—running the kids from place to place, planning meals, cooking, doing laundry, etc. But if I snap my way through a busy day, yelling at the kids and ignoring my husband, the lovely dinner I prepare will be nothing more than ashes in our mouths. If I write to impress some nameless reader, or temper my words to avoid showing my real flaws and screw-ups, or to avoid offending someone with my faith or my opinions, then I am not serving God with my words—only myself and my own ego.
In early January, I sat in the dermatologist’s office, asking questions about my test results and watching the physician’s assistant’s face. She looked like a deer caught in the headlights. I had tested positive for four antibodies. She kept repeating that I was “complicated” and gave me a referral to a rheumatologist. I was in and out of that office in under 15 minutes. When I looked up my positive results that night, I discovered why she looked so uncomfortable—each positive antibody was indicative of a different autoimmune disease. And they were all scary.
The first Bible study after the Christmas break, the reading included with devotions was a section of Psalm 119. The leader gave us a short time to practice some lectio divina, a prayerful reading of Scripture. And this doesn’t happen all that much to me, but that morning, I was stopped in my tracks.“73 Your hands made me and formed me;
give me understanding to learn your commands.
74 May those who fear you rejoice when they see me,
for I have put my hope in your word.
75 I know, Lord, that your laws are righteous,
and that in faithfulness you have afflicted me.”
The psalm continued on the little handout that I was reading, but I did not. It was like a wall slammed down in front of me, stopping me from going further. In faithfulness you have afflicted me. I don’t know what the psalmist was afflicted with. There was no indication or further explanation in the text (or at least, not in that section. Psalm 119 is the longest psalm—it goes on for pages and pages). And I can’t explain what happened any better than this: in that moment, it felt like God was communicating with me. Telling me that He was faithful, that whatever happened, He would remain faithful. That there is a purpose.It all sounds very woo-woo, even to myself. Which is why, if I tried to talk to you about it, I would stutter and stumble and blush. But the fact remains that I read this, I felt this. The presence of God was vibrating around me, just for a moment, and it felt like a window opened and light shone in on my fear and dread. And I’m writing it here to document for my children, and for any others who care to know, that God is faithful, and that I choose to trust my instincts that He gave me that verse. So I grabbed onto that phrase, and I’ve been holding on tight.
Since then, I’ve seen a rheumatologist, had many more tests, and found that my current state of health is apparently better than the rheumatologist had expected. Despite some inconclusive test results, she continues to go with the first diagnosis, dermatomyositis, saying I have “classic” symptoms. Truthfully, it doesn’t matter as far as treatment is concerned. All autoimmune diseases have the same treatment—a small collection of drugs that suppress the immune system.
I’m also exploring possible other triggers—as someone with celiac disease, I tend to wonder if other food sensitivities/allergies have come into play. After much deliberating, I’m holding off starting treatment until I can get some allergy testing. I have my first prescriptions in hand, which I’ll start the day after I see the allergist in early March. In the meantime, my rashes have abated somewhat, thanks to the very strong steroid cream prescribed by the dermatologist’s PA.
I don’t know what will happen. If I think too hard about it, the fear sweeps over me again, and that feeling of having a lead weight in my stomach. And then I have to stop, and deliberately turn my mind to other things, and remind myself that I’ve surrendered this situation to God. I must choose, over and over, to trust.
I chose the name of my blog “Here I Stand” after the words Martin Luther supposedly spoke when ordered to recant his efforts to reform the Catholic Church. At the time, the name referred to my new life in Germany—not too far from where Luther lived and worked and ran for his life. Here I was, in a new place, where I had to learn to live and thrive.
Here I stand, wondering how much suffering is ahead of me. Here I stand, taking one more step toward trusting God and his faithfulness. Here I stand, turning over this diagnosis, my fear and uncertainty, to God—again and again, for I can’t yet prevent myself from snatching it back and brooding over it. Here I stand, hoping He can still make something beautiful out of all this, out of me. Here I stand—not walking or running or jumping. Some days standing is all you can do. Here I stand—I can do no other.