I know that my recent post on Freshly Pressed (which, by the way, was downright awesome and I thank WordPress!) has drawn a lot of new readers who may not know my story. Lesson one in Lydia writing is that everything has a back story.
The background is that I’ve been in a nursing home for fifteen months. I have complex medical issues due to what we can best guess is mitochondrial disease. Essentially, my mitochondria (which turn food to energy) suck at their job, so my body suffers from extreme lack of energy. Some of the results of that are a clear connection, such as the fact that I can sleep for 15 hours and still be exhausted. Others may take a moment of thinking… like, for example, my organ systems suffer the same lack of energy, so those that use the most (GI, endocrine, eyes, autonomic nervous system) don’t work very well. I have a feeding tube, an ileostomy (like a colostomy except I don’t have a colon so it’s my ileum, or small intestine, connected to my abdominal wall), an insulin pump due to almost life-long type I diabetes, and an IV port. My kitchen has almost no food, but every cabinet and drawer plus eight more drawers standing in the corner contain medical supplies. Autism + having to manage THAT? That’s why I was in a facility–I wasn’t able to do it. We’re confident that I can at this point, so, I moved into my own studio on Monday…
Now, I spent the last year or so writing a (non-autism-related) book about my testimony and my journey, and while I won’t go into detail here (yes, even I know, sometimes, when to skip certain details for the sake of brevity!), I will say that one of my big struggles as I concluded that book was unifying my story. In my mind, I had an autism story, and I had a medical story, and I had a recovery-from-mental-illness story, and I had a faith story… but, I didn’t know how to unify those. Who am I–Lydia–not from an angle, but straight on, as a single story? As a Christian, my belief and my answer to that question is that the way Christ sees me… that is the one, true version of myself… that is THE story. Autism and writing and recovery… those are all things that God either created me to be or allowed in my life and used them for good… but they cannot be THE story. So, you come for an autism blog… but autism is not the end-all of who I am, and my life has plots in which autism does not play a part, so sometimes, you will get tastes of other things. I come here, at times, to process, and sometimes, the processing involves other aspects of life, because I cannot just leave them out.
The last fifteen months have taught me lessons I never expected but yet desperately needed to learn. One of the most life-changing things I know, and when I say know, I mean that I know it in the sense that I’ve lived it and not that I believe it’s true… I know (that I know that I KNOW!) that things like joy, and hope, and peace, and purpose, and freedom are not circumstantial. At least, they cannot be if we want them to be abiding. In order to bring those things wherever you go, into the valleys of life, they have to come from inside of you and not outside circumstance. If you depend on external situations to be your joy, or your hope or your freedom, then you will lose them over and over again. But if they, if He, is in you, then you will carry the one and only Source wherever you go.
When I’m on one of life’s mountaintops as I am right now, it’s easy to feel like I’ve reached a pinnacle. In some senses, some parts of my journey, have reached a beautiful closing. I mean, I cannot contain the sheer joy at being in my own space into little black words on a white background. Music is the best way to capture my emotion, and I play it constantly and sing and worship with every new song that pops on (which I couldn’t do in the facility much of the time because of my elderly roommate). But, even from this miraculous view from the mountain, in which I look around at where I’ve been and feel the exhilaration of the closing of those chapters and the possibility at what lies ahead, assured that God has control over every new thing… I have to remember that becoming like Christ is a lifelong process, and that, if I let Him, God can take me ever deeper in knowing Him. It’s a scary thing to pray to go deeper when you’re up so high, because going deeper involves things like discomfort and struggle. Still, So, even from the mountaintop, my prayer comes from one of my favorite worship songs…
Spirit lead me where my trust is without borders
Let me walk upon the waters
Wherever You would call me
Take me deeper than my feet could ever wander
And my faith will be made stronger
In the presence of my Savior
(Hillsong United, “Oceans”)