I woke up the other morning. I woke up, which was pretty amazing because I felt pretty awful.
Once I finally dragged myself out of bed, just long enough to grab a bite to eat, my alpha stim machine, and an audiobook, I slid right back between the covers.
I listened to Sherlock Holmes. I listened to CS Lewis’s The Problem of Pain, hoping to understand more about my problem of pain. I didn’t. Pain is universal, which I already knew. Honestly, the intellectual understanding of suffering does next to nothing to change how my pain receptors, nerves, and body functions. I still felt terrible.
I could feel the depression creeping into my thoughts, as my husband left with his brother to enjoy a day that I had planned for all of us. It’s not his fault. It’s not my fault. I’m not angry anymore. I’m sad. I am so very sad.
At my age, I should have boundless energy. I should be able to live life on my own terms. In fact, I used to stay up all night, get up early, and generally enjoy life. Now I dread going to bed because I hate the time between laying down and falling asleep. I hate waking up because I know that I will hurt. No matter what, I can’t get comfortable.
I can’t make plans in advance anymore. We had purchased tickets to a local minor league baseball game for that day, but I inadvertently bought the tickets for the wrong time–not that I felt like going anyway. My husband and his brother ended up going to a local amusement park without me.
I purchased tickets to see my favorite band several months ago, but when the concert came, I wasn’t able to go. That was the 4th time this year that I missed a concert that I purchased advanced tickets for–and everyone knows that I don’t like to miss a good concert. There are retreats that I want to attend, but with the deadlines looming, I have no idea on August 1 how I’ll fell at the end of October.
Life doesn’t feel quite right anymore. Life hurts. I’ve tried adjusting to the new normal, but it sucks. The new normal is full of pain, anticipated pain, and sometimes new pains that can’t be explained, yet.
Now I sit here, typing, because writing is my only form of therapy that works, emotionally at least. I don’t know if I’ll ever hit publish on this, but if I do, it’s because I want other people to know that they’re not alone. I have no answers. None. The only thing that I’ve figured out is that if I don’t take care of myself it only gets worse. I haven’t figured out how to make anything better–just not to aggravate anything.
I want to pick up my coffee and drink it, but the tremor in my hand, which is making typing painfully slow–yet easier than handwriting–is preventing me. There is nothing more frustrating than not controlling your own body. Millions of people live with movement disorders. My heart hurts when I think about all of the people who can’t pick up their own version of the coffee cup because their brains are telling their bodies to move without their consent.
I don’t know what to do anymore. Life doesn’t bear even the slightest resemblance to anything that I imagined for myself. Yet, there are the unexpected joys that I wouldn’t have, if I wasn’t sick. I wouldn’t be looking at the two sweetest dogs in the world right now. I wouldn’t value my family the way that I do. Also, I may never have met Brian. I feel like a drain on him, but he still smiles at me. He loves me. I don’t know why.
Again, I know that life is not living up to expectations is a part of the human experience, not just for those who are sick. I have perfectly healthy friends who are in unhappy marriages, jobs they hate, or haven’t met the right person yet. They all went to college with ideas of weddings after graduation, white picket fences, and dream jobs. Disappointment, like pain, is universal. I know I have written about hope. Hope that God is making all things new. He makes the broken things beautiful (cue Gungor), but being content with timing is so hard