Friends. How are you doing? Let’s talk… Since I wrote my last post on discouragement, it seems I have let loose a little jackass in my brain who is running around, wreaking havoc on all hopes and aspirations. He’s finding every neural passageway identified with things like “hope”, “purpose”, “desire”, and spray painting penises all over them. I’m sorry if things have gotten a tad crass, but I swear sometimes, even when I write and have ample time to edit. It’s just me. I hope you’ll understand and can still find the Jesus in me. I did even try to look up a synonym for jackass, but dolt and nincompoop just don’t have the same ring.
Anyway, if you’re still with me, there is something I am learning. When you get vocal about the good stuff, the bad stuff gets tah-icked! It then finds a way to throw itself all over yourself and things get, well, bad. I’m also learning that I’m going to keep taking it. You need to hear what I needed to hear two years ago, so even though I strongly believe there are forces trying to keep me from speaking life into you and your disease or your situation, I am going to publicly tell them they need to go whitewash the graffiti, because I spent over a year in pain with a constant need to pee…a couple days of discouragement is not going to keep me from sharing what God wants me to share. So yeah, as all the pentecostals with their hands raised to the sky like to say, “get behind me Satan”. I’ve got work to do.
Something burns in my belly when I hear of others going through a diagnosis, when I know their doctor will offer no encouragement and send them on their merry way. Or when I read about a chronic disease instagramer who killed herself because no-one could help her out of the pain. Something roars when I consider those of you who think you are alone in your frustration, your fear, and your anguish. You aren’t alone. Here’s what I need you to do though, and do it with me, because I need to get out of this current funk, which somehow has nothing to do with chronic disease, and everything to do with feeling discouraged in every other way, but the undercurrents are the same, and we need to do this together. We need to speak a word of life over our circumstance. For you it may be your pain or your cancer or your disease, your divorce, your disappointment or your bank account, but for me it is the doubts I hold over my dreams and aspirations. We may not feel, in this heart sinking moment, like saying something hopeful, but if we don’t hope, what then? We must believe we were called to more than disease. What will we do with our lives? Will we wallow in the muck forever? If you have been recently diagnosed, you need to wallow for a bit, but even amongst the filth, you need to speak these words with me, despite the terrible taste in your mouth: “I keep going”.
You may be lucky and have a doctor who cares enough to give you some hope, but chances are, you won’t. She or he will hand you a brochure on your disease, chock full of obnoxious cartoons spelling out your doom, and wish you the best of luck with your 35 new medications. I have been so blessed to find a doctor who spends time with me to determine what my body needs to function better, but I didn’t have him when I received my diagnosis. I am just going to be honest that a good proportion of the medical community needs some lessons on bedside manner. So you’re not going to find hope from your doctor, at least unless you are one of the very few. Some of them simply don’t understand the psychological, emotional, and spiritual toll getting a brand new disease can take.
Getting a diagnosis displaced me. I didn’t feel adequate anymore. Chronic disease, or I suppose disease in general, does a splendid job of stealing away your identity. They talk about it in research. I wrote about it in my manuscript. It’s just I don’t much feel like referencing anyone right now, so I’m just going to tell you what it did to me, which is very much what research says it does to most of us.
Disease comes in and it tells us we aren’t us. We can’t eat the things that we eat. We can’t wear the things that we wear. We can’t do the things that we do. Everything changes in a minute. We change in a minute. We didn’t ask for it, and there we are, a stranger looking in on a pathetic, failing body.
It took a year for me to relearn who I was. It wasn’t a complicated puzzle, however. I’m not Interstitial Cystitis. I’m not a disease. I’m not pain. I’m mom, wife, daughter, sister, aunt, writer, teacher, psychologist, dreamer, creator. You’re not your disease, your situation, or the name the jerk who cut you off in traffic called you. Try to connect with that person underneath as you go on this journey. Maybe you’ll heal tomorrow, next year, or never, but I promise you that learning you are you beyond your disease is imperative to keeping from turning into a blobby invertebrate on the floor. Get out a piece of paper and a pen and write yourself down. Are you kind? Write it down. Do you like to shop? Write it down. Do you pick your nose in public? Yeah, maybe skip that one. We’re also going to talk about what to do about the parts that don’t jive with your new uninvited disease, but first, just get in touch with the big ‘ole you and stew in that for a while.
I promise I won’t stop fighting if you promise too. Let’s lock that little jackass up in the part of our brain that we stored those algebraic formulas we will never remember. We can’t give up, friends. Our lives hold more purpose than the pain wants us to know. So write yourself down and repeat after me, “I keep going”.
Thanks for sharing your beautiful writings and perspectives on chronic illness. It’s refreshing to read your views to say the least. I feel beyond privileged to be able to peek into your brain. Your writing has inspired and held me in a trying time recently. I’m immensely grateful to have found you. 💟
Marcie! Thank-you!! I love comments like this and I love that you are a part of this community. The whole reason I write is for this very reason – so so happy you have found something inspiring and helped you!
Thanks for being here!
Callie