WNIJ Perspective: It’s Time for More Research on This Rare Disease
When Amy Anderson stumbled, she heard a loud pop. Her ankle had completely folded over. She’d torn her peroneal tendon in her foot. The intense pain was immediate. She went nine months of misdiagnoses before she was finally diagnosed with CRPS, complex regional pain syndrome. Then she needed six months of desensitization therapy before they could repair the tendon.
She says, “It’s all pain sensations at once, so it’s pin/needles, stabbing, crushing, constant aching. It feels like a red-hot poker is always in my foot. So imagine if you put your foot in ice water for a minute, pull it out and pour gas on it, light it on fire, then shoot a million tiny arrows into your foot.“ It is at the top of the McGill Pain scale and has been nicknamed the suicide disease.
The Cleveland Clinic says CRPS affects about 200,000 people every year in the U.S. Most of the cases are caused by nerve trauma or by injuring the affected limb. The thinnest nerve fibers that let us feel pain, itchiness, and temperature are damaged. These nerve fibers also control the small blood vessels and affect the health of cells.
When Amy was taken by ambulance to a local ER with a flare, the doctor had no idea what she was suffering from. She says, “This disease has so little awareness med schools aren’t even teaching doctors about it. Since it’s so rare there’s little call for researching cures.“
It’s time for that to change.
I’m Katie Andraski, with my neighbor Amy Anderson and that’s our perspective
If you want to listen to this on WNIJ click here.
When Amy shared her story, all I could think of were the three Hebrew men who were thrown into the fiery furnace. They refused to bow to Nebuchadnezzar’s image when the music played. The king asked, “Who is the god who will deliver you out of my hands?“
The three Hebrew men replied, “We don’t need to answer you. If our God is able to deliver us from the fire, then he will. But if he doesn’t, we will not serve your gods.“
The king ordered the furnace to burn even hotter, so hot that the men throwing them in burned up. But the men didn’t even smell like smoke, when they came out. There was a fourth person walking with them in the flames, that the king said looked like a god. (Daniel 3: 8 ““ 30).
What does this have to do with Amy’s stepping through pain worse than hot coals, day and night? Because the Lord is walking with her in that furnace. She has found purpose in alerting people about this rare syndrome. She has sought help from assorted medical people and therapists to help her heal the effects of abuse and trauma in her life. She is writing poetry to push back against the pain and starting a Substack called Walking on Fire 79 CRPS Warrior. The first poem she has published is called Five Years of Fire: A CRPS and Allodynia Tale. This month she was featured in this month’s CRPS Warrior Foundation Newsletter where they say “her story is one of rising above. She created a Reddit community CRPSwarriors UNITE to give warriors and caregivers a safe space to connect, share and support one another.“
Amy says, “Once I started connecting with a couple other warriors and hearing their stories, it gave me a new outlook, a positive one, a yearning to help other CRPS warriors. It gave me hope back knowing I wasn’t dealing with it alone anymore. I now have wonderful people I can talk with who actually relate to what I’m going through.“
Amy has been thrown in a furnace, and it seems to me she has found “one like a god“ Jesus himself, walking there with her. I have also seen Him walking with the woman I talk to at a local restaurant whose father has dementia and the woman I spoke to the other day at another local restaurant whose family has debilitating illnesses and suffers from a repaired fracture in her ankle that is swelling and painful. Both of these women are serving the public with kindness and aren’t afraid to hug a stranger who might be out of sorts. Another friend suffers from terrible autoimmune diseases and tends to her disabled husband. She has written a play and is writing a novel. A lawyer friend who could be retired suffers from vicarious PTSD because his job is to help the local child service agency protect children and help families.
Each one of these people are facing their suffering with grace and joy. They are pushing back against the pain by making art or making space for people. They keep walking and turning to the Lord, even in the midst of intense pain“”emotional and physical. God is with them in the fire. I see His presence in their lives and in mine.
Jesus has walked with me when emotional and physical furnaces have been stoked. I have felt the truth what the Psalmist says, “He heals the broken hearted and binds up their wounds. He determines the number of stars; he gives all of them names“ (Ps 147: 3 ““ 4). On my nighttime walks with Omalola I sometimes see the Milky Way, smeared against velvet dark. And that’s not even all of the stars. I can’t hardly imagine that the one who counts out the stars and names each one, like Adam named the animals, heals the broken hearted and binds up wounds. It’s hard to imagine that our broken hearts and bodies are that important to the Creator. But my tears have been dried. I have been comforted.
St. Peter writes, “Beloved do not be surprised at the fiery trial when it comes upon you to test you, as though something strange were happening to you. But rejoice insofar as you share Christ’s suffering, but you may also rejoice and be glad when his glory is revealed“ (I Pet 4:12, ESV). I used to think sharing in Christ’s suffering just meant persecution. But I think that sharing in his suffering is broader than that, since we are his body here on earth. Since Jesus experienced everything we experience“”sliding out of a woman, needing diapers changed, utterly dependent on his parents, the joy of elders learning from him, getting out of bed the day after his father died, having his feet massaged by a woman, eating a good meal with friends, begging to avoid a gruesome death, he is able to draw near to us in our suffering and in our joy.
C.S. Lewis in The Problem of Pain says, “The Christian doctrine of suffering explains, I believe a very curious fact about the world we live in. The settled happiness and security which we all desire, God withholds from us by the very nature of the world: But joy, pleasure, and merriment, He has scattered broadcast. We are never safe, but we have plenty of fun and some ecstasy. It not hard to see why. The security we crave would teach us to rest our hearts in this world and oppose an obstacle to our return to God: a few moments of happy love, a landscape, a symphony, a merry meeting with our friends, a bath or a football match, have no such tendency. Our Father refreshes us on the journey with some pleasant inns but will not encourage us to mistake them for home“ (103).
Though I’m not sure but that the world isn’t home, that one day the earth will be made new. The earth, this world. I’m not sure but that we can walk in paradise, right here, right now. Despite the fellowship of suffering, which also welcomes the power of the resurrection.
One morning this week, I woke to our bedroom covered in mustard light, eerie, like a dangerous storm building or the end of the world or poison air. People report a greenish, bilious light before tornadoes strike. Bruce was not in bed. I threw back covers, bleary eyed. I don’t wake easily in the morning. I looked out the window to see him walking out our driveway.
“I saw a double rainbow. I snapped a picture,“ he said.
I can’t say that I blame him for not waking me up because he did come get me to show me the Great Horned Owl perched on the tippy top of our dead pine. They are so secretive, so mysterious, this one felt like an omen, a portent of change, of wisdom, of mystery. Years ago I dipped into a popular book about aliens, Communion, that noted owls can be those spindly big-eyed creatures, faeries? but our eyes can’t see them for what they are. I do believe there are many things we aren’t able to see with modern eyes.
I asked my storyteller friend, Martin Shaw, what they mean. He simply said he likes all sorts of owls and his mother is owly. So maybe a Big Horned Owl is just an owl watching for dinner, dinner that I hope doesn’t turn into one of our barn cats.
Sleep hasn’t been easy this week. I was awake most of the night of the tsunami warning. I guess shockwaves traveled across the world, sweeping through Illinois after the 8.8 earthquake. I asked God to calm the wave, to stop the destruction on the coasts. And got up and puked my guts out.
After talking with Bruce, Omalola and I walked down the road. The sun pulled above the horizon. The rain simply dripped.
Note: I imagined being the wife of one of the Hebrews thrown into the furnace in “I Couldn’t Keep my Eyes off the Idol“ if you want to see what I did with it.
Lewis, C.S. The Problem of Pain. Fontana, 1959
