Yesterday marked one year since I hurt my other ankle—the simple sprain which became CRPS, which led to an unfinished school year, which prompted a career move for the sake of a shorter commute. (The list could be longer and reminds me of children’s books that repeat and build with each page…)
Bed-bound since last Friday with the flu and bronchitis, I’ve been jotting down thoughts on the last year in between coughing and naps. And, as I’ve thought through what this year has consisted of–more doctors than I’ve seen in my whole life, the slow progress of physical therapy, fashion accessories like ankle braces and TENS unit wires, the imperative knowledge of which socks burn and which ones don’t–what surfaces more quickly than all of that is what I’ve gained, what good it’s done me.
I’m reluctant to say here that CRPS has changed my life. That sounds uncomplicated, painless and shallow. The informality of a blog can make a topic like this seem like bathroom reading, when really, the extent of the change in me is something I still cannot fully describe or see the bottom of, but I want to try. Because, in the midst of trials that seem unending, the saving grace is in the gratitude.
As Scott and I reflected yesterday on that one year marker, we shook our heads astounded and agreed that we are happier today than we were before this. We are happier today than we were a month ago. We are happier today than we thought possible a month ago. This coming from a very sick woman who left her house twenty-eight days ago and doesn’t know when she’s going back; who’s been sleeping on floor mattresses and hacking up green stuff while toxic mold remediation is underway at her house. This coming from a woman who is writing this on her phone, who doesn’t know where her computer is or if it’s being handled carefully. But we’re happier, hand to God. I wouldn’t lie to you. And when I say happy, what I mean is content. What I mean is joy we never knew and an unshakable confidence that the possibility of good exists in the midst of and as a result of darkness.
On a ridiculously hot July day in 2013, Scott and I stood in a garden in front of our friends and family, and promised each other that we would care for the other in sickness and in health. When we repeated that vow and smiled at each other, I think we both had visions of being old and cute, maybe a little wrinkled when the vow might be tested. Maybe we’d be missing a few teeth, praying quietly while keeping vigil by a hospital bed, surrounded by great grand kids and flowers. Maybe there’d be some bout with something bad but beatable, but we’d have lived such happy and full lives that our love would be deep and sturdy.
What we didn’t have in mind, what we had no way of knowing, was that, a couple years in, I’d sustain a partial ligament tear to my left foot while stepping up on a bleacher trying to get that glute burn, an injury that would keep me in a boot named Norman for 49 days and cause me to quit my beloved job as a spin instructor.
These things happen, though. An inconvenience, a challenge, but no big.
We counted our lessons, of which there were many, from July to January and, when I graduated from physical therapy, we counted our blessings when it was over. We patted each other on the back and said, “Gee, that was hard. We’re tired. Glad that’s over.” And then we started making plans for how great life was going to be without that injury. We had big plans. Scott had a dissertation to finish and I was going to start painting again.
Less than three months later, when I’d finally started wearing real shoes to work instead of sneakers, I was back on crutches. And how could we have known then that the sprain would not heal? That my body would revolt? That CRPS would develop and then spread without any consideration for our noble plans or desire for normalcy?
Last May we left the neurologist stunned by the long name of a diagnosis we feared and a prescription for Lyrica, which I never took. We were quiet. The doctor had told me that I’d need to “develop a strong support system”, that this wouldn’t be easy, that it could spread and that I wouldn’t be cleared to return to work for a long time. I remember Scott pulling the car over, turning to me, and telling me not to be afraid. He told me we had this. And I believed him. In that moment, every other lesson we’d learned paled against what we were about to learn. Every other vow seemed minuscule. That day we started fighting together for information, fair care, and appropriate treatment options.
I will tell you that it has not been easy; that last summer I thought we would break under it all. That the same day we decided to fight this thing, I made the mistake of googling CRPS and our world was rocked harder. I’ll tell you that we ate a lot of Ben & Jerry’s and didn’t feel great about it, that well-meaning people don’t know how to help with someone who struggles with chronic pain, that caretaker burnout is real and that, for almost a year, we have not been equals. We had to learn to function as doctor and invalid and are only now unlearning those patterns that were essential to our survival. I couldn’t walk, couldn’t work and it hurt to bathe. Scott has sat with me through painful tests and talk of MS, chest x-rays and white blood cell counts. I reached 100, then stopped counting the burning nodules that have grown rapidly in my legs and have spread to my arms and torso.
It has not been easy.
My husband jokes that marriage makes you a better person in all the ways you never wanted to be a better person. Sickness in marriage changes everything even more quickly, blowing up every notion of romance and replacing it with necessity and survival.
Our once full social lives have been non-existent since December when the pain increased and spread, and left us empty and discouraged. In the last year we’ve gotten on each others’ nerves and cried to our parents and closest friends about fairness and fear. We’ve cursed and cried, slammed doors and seen God’s kindness in good doctors and good pain days. We’ve watched the other fight hard to hold onto faith and develop an Internal Endurance in the process. We’ve learned the value of creating a safe space to say this isn’t working and what the hell and when is God going to show up. We’ve challenged each other to pursue the joy of our salvation and not the false hope of self-sufficiency–for two independent people with big life plans, this is murder. We’ve lost control but discovered freedom in the lack of it. And we believe more than ever in the calling on each others’ lives, on the bigger purpose God has for us than to simply have a nice life and be comfortable. We’ve loosened our grip on our plans for a family and told God to do what He wants, when He wants, instead.
I can tell you that we are better teammates with bigger vision and clearer perspective. The disagreements we used to have over bedroom furniture and basketball games seem like the grievances of ghosts. We are not them any longer.
Before this started, my concepts of hope, contentment and security were limited to what I’d known. They were small, airbrushed ideas of what life would be like, images perfectly centered, squared, and tinted–his and her coffee cups, fresh flowers, held hands and home cooked meals–the surface proof of a tangible connection; the tangible proof of a surface connection. But a year after losing another ankle, developing a pain syndrome so confusing, so challenging, breaking a tooth, hiring two lawyers, leaving a house, counting lumps, tracking pain, quitting a job, I know better what it means to hope, how it tastes, what contentment feels like when you put it on each day without thinking. Getting to the point where there is no battle to be content, you just are it. But here’s the thing about hope, security, and contentment. When they’re in place, they aren’t phased by bad news (like toxic mold in your house) or great news (like job possibilities). They become buffers for waves to drum against. They absorb the blows and push back, keeping us safe from so much rocking, keeping us still in all the swaying.