I don’t quite know what to do with myself at the moment. For the past month or so, I feel like I have been running non-stop. I’ve alternated things that bring me laughter and joy with not-so-fun doctor’s appointments, scans, tests, and results. I’ve been working extra hours at my day job and spending my spare moments helping with the Grey Havens summer camp plans and other volunteer business, in addition to trying very hard to exercise even more than I already did.
I’ve been running fast. And now it feels like I can stop for a while, but I don’t know what to do. My next check-up is in a couple weeks, and then a kidney specialist visit in a month, and I have to schedule another scan…but I can’t do that right now, and even when I do it will have to be for a couple more weeks out. I am waiting. I know that I have polycystic kidney disease, and thankfully so far nothing else, unless that next scan proves otherwise…but I still don’t yet know what this all means for my future. Right now, I am taking my medication, exercising, and waiting to see what comes of it…
Today, my family is pre-occupied, and my love is at home getting ready for his work week, and I am physically alone. It’s quiet outside, almost too quiet, but I wish it were quieter in my mind. I woke up early today and held my love close as my mind kept racing and racing. I’ve already exercised, twice, today. I’ve cleaned, I am cooking, but I can’t help feeling like I am supposed to do something else. I’ve been running so hard that I’ve forgotten how to just be still— and that it is perfectly okay to just be, by myself.
I know I’ve been reserving my moments of pleasure and relaxation to spend them with my love, but that doesn’t mean I can’t relax and do nothing for an afternoon by myself, right? I’m so very hard on myself. I need to just let myself be, and be alone, and rest. I don’t want to be afraid anymore. I’ve been so afraid for weeks that I don’t know how not to be afraid anymore. I am thankful that I have people in my life who help me to pull me out of this and lead me to think positively.
However, now that I am alone… I’ve tried to read; I am reading five different books. I’ve tried to watch tv; I’m watching about five different shows. I can’t slow down long enough to get absorbed into one of either of them. I want to so badly. Sometimes, it feels almost like the first year of grief all over again.
And yet, sometimes I can experience the most ecstatic joy– and a love that makes me wonder how it’s even possible to be filled with this much of it, a light so bright. I’m so glad I have that, but of course that comes with the fear of losing it. But I must push that aside (perfect love casts out fear) and enjoy the now. Yoga has helped me to think of the now; if only it were as easy to take that focus and serenity off the mat… I do love catching this echo of the Divine in the now, in human love, in natural beauty, in knowing my own body.
I know this post is all over the place. I am even typing it as I cook dinner– I can’t even commit to doing one thing at a time. But hopefully the days will get better and not worse; hopefully, I can learn to create a new normal, just as I have after losing my mom, and then my dad. This chronic disease does not have to define me. Let me go, ‘cuz you are just a shade of what I am, not what I’ll be. I want to hold on to the hope I tried to grasp in my last post. I want to do great things with the time that is given to me, but I also want to just be still– to enjoy the resting, to be okay being by myself, to reconnect with God, and to breathe, to listen and connect to the rhythm of the universe.
I am still thankful. I am thankful for the amazing friends and family in my life, for a decent job working with compassionate people, for a volunteer position that changes young lives, for doggy cuddles, for love, for today. I will try to be thankful for the quiet, for these words, for the darkness too. Let there be light.