I was listening to this podcast (https://youtu.be/bpW1c-yhs6Y?si=8OXP1zcMCjlPsisS) with Carey Nieuwhof and Jennie Allen, and I cannot get the idea of vulnerability and authenticity out of my mind. We can only bring people to Christ if we are willing to put our authentic selves out there. It started me thinking about who my authentic self is and who I am hiding from others. Turns out, I’m pretty good at masking how I’m feeling and putting on a brave face. It stands to reason that hiding my true self and refusing to be vulnerable could be a turn-off when working to get closer to a community that follows Christ.
Listening to this podcast was the last push I needed to share something I keep closely guarded in my heart. It has been on my mind for the past few weeks, so I decided to be vulnerable and not hide the parts of me that may not be my best qualities.
What’s it like for me to have a chronic and mostly undefined illness? My go-to answer in public, when asked how I’m feeling, is generally: “It could be so much worse,” or “Oh, I have good days and bad days,” or “I woke up today, and that is amazing.” These are all truthful statements, but they guard the deeper parts of my heart and soul.
So, I reflect on my day on this day. Today, I needed to drive 25 minutes to the car dealership for an oil change and then go 25 minutes home. I had this chore set in my mind. I made sure I set my alarm, I made sure I ate breakfast, and I ordered an iced green tea to pick up on my way. Except there was so much traffic on my way down the hill that it took over double the amount of time it should have, and when I arrived to pick up my tea, the drive-thru line was out of the parking lot. I decided to go in, where it turns out I had forgotten to complete my order ahead! And it was raining. I got my iced tea, and after all that, it did not have the right taste. Thankful, my exasperated mood changed as soon as I was no longer in traffic and accepted I would be late for my appointment (something I hate).
The dealership was easy, and I was on my way, but my eyes started burning and clouding at the edges – something that happens to me more frequently these days. I got home at 10 am, cleaned up, put on my comfies, and hit the couch. I did some computer work, made lunch, and tried to read, but I couldn’t decipher any of the words. I put down the book, and I tried to put a movie on, but the subtitles were again making that attempt impossible. I put on a comfort show and closed my eyes. I slept for nearly 2 hours, and when I woke up, I was not rested at all. My head and neck hurt, my body was sore and stiff in different places and numb in others, I was just feeling blah and so very tired—no fever, no other symptoms, just what I experience on a daily basis. I pushed myself, with some breaks, to make dinner for the family, and now I’m back on my couch with pillows supporting every side. I will try and read some more until it is time to climb into the adjustable bed and begin the challenge of sleeping through the night!
This is the reality of most of my days. Sometimes, it is a lot worse, and rarely it can be a less symptomatic day.
I feel anxious a lot of the time, even though I take medicine. I give myself pep talks and read and listen to what I can to make those feelings dissipate, and they usually do, but sometimes they don’t. Often, I turn to planning music or other things for religious services; it’s where I connect best with God.
I feel lonely even though my loving family and friends surround me; the walk of chronic illness is a lonely path because there isn’t really anything anyone can do for me, and I often have to cancel plans or not even join in plans. It used to be that I was no good after 5 pm, but lately, I feel lucky if I make it to noon before needing a break.
That’s the other feeling that surfaces so much: that I’m letting people down, especially my children and husband. I used to be compared to an energizer bunny. Even with everything we went through with my eldest’s health and developmental challenges, I was never down for long.
However, when I started having these debilitating headaches in 2021 and was diagnosed with MoyaMoya syndrome/disease and fought through brain surgery on both sides, my body and ability were no longer the same. My last surgery was in September 2022, and I’m just starting to feel the beginnings of acceptance that this is my new normal. This is who I authentically am, and while I refuse to complain about it incessantly, it goes into many of my decisions and who I am as a person, friend, mother, and believer. It was vital for me to do this self-reflection, and I know I’m only touching the surface of so many feelings. What about you? What authentic part of you are you keeping only to yourself, and is it preventing you from making deeper connections?
Amanda
Amanda you are an inspiration.