Narcolepsy is a burden just like my old maiden name was for so long. I have been married for almost two and a half years, and I just changed my last name from Burden (my maiden name) to Anderson (my married name).
I majorly procrastinated on the arduous task of changing my name. I am usually not a procrastinator, though. There are times, yes, that I have definitely procrastinated. But all in all, I usually lean to wanting to get things done as soon as possible. Procrastinating actually usually stresses me out more than getting things done right away. I generally don’t like unfinished tasks staying unfinished.
I’m good with the quick and easy tasks. The tasks that are familiar, straightforward, and that don’t involve much risk. I am on top of cleaning the bathroom, emptying the dishwasher, taking out recycling/trash, and noticing when the backyard looks a mess. Basically, all the routine tasks.
Changing my name was not one of those tasks. It was actually my worst nightmare, mostly because of narcolepsy.
I rely on a strong medication named Xyrem to be able to sleep every night. It is a controlled substance that is only available through one certified pharmacy and the XYREM REMS program. I have to call the pharmacy every month to schedule a shipment for my medicine to be delivered in time. I have to confirm my identity every time I schedule a shipment and every time I pick up the delivered medicine.
I can no longer sleep during the night without the medicine. Because I have been taking the medication every night for nine years, my body has adjusted to being dependent on the medicine to be able to sleep through the night. I can now only sleep for about an hour or two at a time during the night without my medicine.
Even just one night without it majorly throws me off because of how disturbed and broken my sleep is at night. The next day automatically becomes a house-bound recovery day. I don’t trust myself to drive because my narcolepsy symptoms are worse than usual.
And because of all of these complications that come with living with narcolepsy, I got scared of changing my name. I worried about the timing of all the necessary updates with social security, MVA, insurance, and my certified pharmacy. I worried that I would screw it up somehow and not get my medication because things weren’t updated properly in time for my next shipment.
The fear, the complications, and my own limitations from narcolepsy can make simple things turn into burdens. I finally changed my name, and it wasn’t easy. I actually recently had to go three nights without medication because I was changing my insurance provider and last name during the same time.
Those three nights and days were hard. I didn’t want to disturb my husband’s sleep, so we slept apart. I wasn’t sure what to do by myself during the sleepless hours of the night. God felt like my only companion during those hours, though, so I sought him, and he met me. He met me through podcasts, scripture, prayer, journaling, and sitting in silence. He met me in the quiet of the night as I sat in my green chair with the lights turned on at one or two or three in the morning.
God is kind and tenderhearted. He is near the brokenhearted, the sick, the lame. He is near me, and he is near you. It doesn’t always feel that way, and it can be hard to believe at times. But I want to hold onto those moments in the dark when God meets me because they remind me that God is my rest when I have no rest. They help me to see beyond my burdens and disappointments. Those moments are sacred, special, broken, and messy. They help me lean on Christ and discover him as the one who lifts my burdens.
I don’t know what your burdens are or what comes to your mind as you read this post, but I know you have burdens. We all do, regardless of their nature. And that’s okay because our burdens are not ours alone to carry. We are not responsible to get it all right or to manage our burdens independently. We have a loving and caring God that carries our burdens and is the lifter of our heads. I know it doesn’t seem that way all the time. I know it can be hard to believe.
The amazing and beautiful thing is the joy in experiencing Christ as the lifter of my head and the one who carries my burdens. By the end of my three nights without medication, I was encouraged by the unique and intimate ways that Christ pursued me throughout those sleepless nights. He was near.
He always is.