It always comes knocking when it is the most inconvenient.
That particular day, it showed up while I was driving, on the way over to a friend’s house. I was ready for a full fun active day of pie eating, aimless adventuring, and of course photo-ing. Or at least, I thought I was before it arrived. There were no warnings at all. It was just like… BAM. Hello, I’m here, and I’m not sure how long I want to stay around this time so I’ll just play it by ear until I decide it’s time to peace out. And by “it” I really am talking about the random fever, the super numb feeling attacking my limbs like when you have poor blood circulation, and skin so insanely sensitive to touch, almost like having a million small needles being inserted into my body at one time.
Why? Because, autoimmune things. Because, Lupus.
Some mornings, I open my eyes and realize it’s hard to inhale all the way deeply without pain in the parts under my ribcage before having to slowly exhale the half breathed breath. This is not a metaphor or symbol for anything. I’m basically saying that I wake up some mornings with actual physical pain in my body. Today is one of those days.
I swear God has a way of humoring me because just last night, I was having a conversation with someone about how I’ve been more aware of how much time I spend in areas of my life, and who I choose to spend it on. I told him that I’m learning to have better boundaries with my time. That, my time is valuable and sometimes it is limited so it is pretty essential for me to be a good steward of the time I am given. Several years ago, I’d be caught dead saying something like that because it really does sound like a selfish dick thing to say. But present day Juliann really doesn’t feel so bad for expressing that because between music things and photo sessions and traveling and with the grind of life in general, ain’t nobody got time for petty drama about this girl or that guy or silly cat fights or doing things in life that result in nothing but drainage.
Let me explain it a little bit further; this thing about drainage and wasted energy and how sometimes, I only have so much of it and need to choose wisely with where I place my time and what I use it on. Better yet, I’ll let Christine Miserandino explain it. We call it the “Spoonie Theory.” Anyone with autoimmune/chronic illness friends and family, or more specifically, friends and family who have to deal with Lupus on the daily, this is a good read if you want to find out and understand more about the mental process. It’s a real thing.
It’s always a good time to reflect. This time in the year marks the anniversary of the health journey I’ve been on, the one that started seven years ago forcing me to take medical leave from school and had put me on bed rest for quite some time. Physical sickness does a lot to you not only on the physical level, but the mental, emotional, and spiritual areas as well. In the midst of feeling weak, it also strangely makes you strong. Wait, I take that back because it’s God who uses it to make you stronger. And, it’s God himself who is your strength. I have stories and lessons to share for days that maybe I’ll save for another blog post. But in a nutshell, chronic illness teaches you unbelievable amounts about yourself: It teaches you how to have more faith and shows you the things you truly need (or don’t need to hold onto). It forces you to have to learn to deal with uncertainty each passing day. It tells you, you have no control over anything and that you must be okay with that. And, it teaches you how to be brave and courageous in your illness and the circumstances life has placed you in.
The one thing I’ve learned, and continue to learn throughout the process: RESILIENCE.
And what resilience says is: Let the world turn without you.
I’d be lying if I said it wasn’t hard—to make good choices, letting go of things and people who are toxic to your well-being. It’s hard because internally, all you want to do is keep going at a hectic pace with refusal to slow down. You actively want to take care of and be present for everyone and every event on your social calendar. Honestly, it is hard to say “I need to take a chill pill” and keep yourself from wanting to do it all because the recovering classic over achiever in me just wants to be in all the places and do all the damn things.
Sometimes, you have to step back and have people do it on their own.
It doesn’t make you fickle or flaky. It doesn’t make you apathetic or come off like you don’t care. Stepping back just means that you don’t have to be responsible for keeping the world turning because the reality of it is that the world can and WILL turn without you.
It’s funny because I used to find shame and be pretty embarrassed about being sick, even with it being something completely out of my control. Because I believed the crazy lies about how having to deal with health things made me less capable and less of a human being. I would think things like:
If people found out, they’d run, and they’d run as far as they could.
Or, I’m never going to find someone willing to walk alongside me on this health journey because it takes more maturity and a willingness to be molded and never ending amounts of pouring grace to be with someone going through something like that.
Or, people say they vow to love you in sickness and in health, but what if it’s a lifetime of sickness? Then what? They’ll probably just flee as soon as they find out all the details.
But going through all this has helped me progress so much quicker in a lot of ways than not going through hell at all. I wouldn’t choose it upon myself or anyone else for that matter if I could, but I also wouldn’t change the situation on most days.
So yeah, normal people get colds, I get flare ups. And sure, some days are more dramatic than others and I have had to be creative in weird ways with how I manage my life. And although not every day is proven to be the easiest, I am thankful—thankful beyond measure for the ability to be alive and to have opportunities and grow in ways I never would have began to imagine. God really has a way of looking out even when you don’t think He is. Life is dull, that’s for sure because it never turns out the way you curate it to be. I sure as heck didn’t wake up one morning and pray for these kinds of circumstances to creep into my life. But they are here and they are very present, so that’s that.
Resilience constantly reminds me of this: Take it all in, my darling. Take it, and run with it, and paint breathtakingly beautiful murals on walls wherever you go. Meet the world on your own terms. Let God orchestrate, but remember it is you not your circumstances who makes the marks—IT IS YOU WHO HAS THE ABILITY TO CREATE.
