Tomorrow I leave for Winston–Salem, NC for the final mid–semester intensive before I defend my dissertation in August, God willing and if the creek don’t rise. For the first time, we are gathering with other cohorts for a church conference co-sponsored by United Theological Seminary and Union Baptist Church, pastored by Bishop Dr. Sir Walter Mack, who is a longtime mentor at the seminary. In theory, I really want to go.
But there’s also reality. I’m on two new medications, something about which I wrote two days ago, which brings me up to a grand total of ten. Two meds have to be taken with food, one has to be taken an hour before food, seven have the side effect of dizziness, four can cause edema, five can cause drowsiness, and I’m a bit uncertain how these two new ones are going to interact with everything else as it has only been a few days since I started taking them.
I also have problems with large crowds, which sucks because I grew up following Bob Dylan. I’ve seen him live thirty-two times, and it isn’t more because I had to stop a decade ago. I have a pretty kick-ass live show list, but those days are gone. Add to my growing agoraphobia, severe tinnitus, hyperacusis, declining hearing, and tactile issues, events with lots of noise and people are an energy-draining nightmare for me, especially if Miriam is not with me to be an assuring and reassuring buffer.
I used to really like road trips by myself. I’m an introvert who likes complete control over the radio. Of course, we all have the same prep: do we bring food, or eat on the road? Since starting a keto diet, I am decidedly a “bring food” person. Today I finally have to face the wreck that is my car. I still have stuff in there from Julius Caesar, and by “stuff” I mean LaCroix cans and unwashed costume pieces. I am much less anxious driving in a clean car.
Since becoming sick, road trips are exhausting endeavors filled with contingency plans. What if I get too dizzy or fatigued and can’t make the drive in one day? I’ve already scouted hotels along the way and will get up early to make the opening worship. What if I have a bipolar episode, need help, but am unable to communicate? Miriam can track my phone and we’ll check in every hour until I get there. If I don’t respond within half an hour, she’ll know my location and can call for help.
I hope this week is a positive experience, but truth be told I am just hoping to get through it and back home safely. I don’t have children, So I don’t have to negotiate those challenges. I can only imagine the stress and exhaustion. I write as a chronically ill person finishing a doctorate. As a result of my own experiences, I think I am now more sensitive and aware of what I don’t know about others. Sometimes, showing up is the greatest thing a person can give. The energy I will expend just to show up dressed and with a smile on my face is enough to warrant another eight hours of sleep.
At this point, I don’t know what my level of participation and engagement will be; I hope high. Regardless, as I continue to discern God’s presence in life’s challenges, I am increasingly aware of how important it is to be kind to someone who is late, or who arrives a bit disheveled, or who may fall asleep during an event. Too often we assume laziness, poor organizational skills, or incompetence. We so often err on the side of cruelty.
My thyroid and medications are conspiring to tip me over 300 lbs. I’m constantly cold. I hear multiple high-pitched tones all the time, along with two other manifestations of tinnitus, from moment-to-moment I ward off panic attacks, I’m frightened to speak on the phone. I need a ridiculously powerful sleeping pill to sleep, yet I am deeply exhausted most of my waking hours. This is on good days. I push through all of this because life is beautiful. My being there is a sign that I care, that I’m engaged, just like everyone else.
I also call off. I lose focus. It can take me days to make a phone call because my anxiety is so high. I can be so exhausted it is perhaps unpleasant to speak with me because I look sick and/or disinterested. I forget things, misremember details, and can become confused and overwhelmed in certain situations. For all the positives you get with me, there is a growing list of negatives. I’m discovering that’s how it is with chronic illness, the greatest of which, for me, is Bee-Dee.
There are people who go through so much more than what I describe. So. Much. More. But that’s kind of the point. Our culture is cruel. We don’t have to be.