For you formed my inward parts; you knit me together in my mother’s womb. I praise you, for I am fearfully and wonderfully made. Wonderful are you works; my soul knows it very well. My frame was not hidden from you, when I was being made in secret, intricately woven in the depths of the earth. Your eyes saw my unformed substance; in your book were written every one of them, the days that were formed for me, when as yet there was none of them. Psalm 139:13-16
So I have muscular dystrophy in addition to the spinal syrinx. I realize I just sort of rolled that out there without much detail last blog post but I had so much to process myself. Muscular dystrophy is a genetically inherited progressive neuromuscular disease and adult-onset muscular dystrophy does, in fact, run in my family but I didn’t actually learn that, in detail, until just very recently. There is no cure for MD, but I will be receiving different therapies as well as needing lifestyle and nutrition changes. Concerning the syrinx, they are running a test to diagnose that the cerebrospinal fluid is flowing normally. It has been determined that the syrinx has been causing pain, but MD has been the main reason for muscle weakness, particularly in my legs.
MD is a disease, but it’s progressive, and it does lead to disability. Our society has certainly progressed on its view concerning people with disabilities. In the Cleveland airport, I picked up the book Unbroken to read on the plane. I had heard from several people that it was a good read and I needed something to kill time in case the plane got stuck on the runway for hours, getting sprayed with de-icer. I had a little experience with this on the way out to Cleveland so this time I was ready! A section of the book really jumped out at me, in light of my own diagnosis, only two days old.
In the 1930’s, America was infatuated with the pseudoscience of eugenics and its promise of strengthening the human race by culling the “unfit” from the genetic pool. Along with the “feeble-minded,” insane, and criminal…orphans, the disabled, the poor, the homeless, epileptics…the blind and the deaf, alcoholics… Some eugenicists advocated euthanasia, and in mental hospitals, this was quietly carried out on scores of people through “lethal neglect” or outright murder. Unbroken, Laura Hillenbrand
We have come a LONG way since then. We now live in a society that rallies around people with disabilities. Encouraged by my Cleveland neurologist, I’ve already gone on the MD association website. There is seriously a walk for muscular dystrophy every other week in areas all over the country.
That’s awesome, but let’s get back to the Bible. The Psalmist says I am “fearfully and wonderfully made.” Now I realize David was talking about himself and he clearly didn’t have any disabilities, that little giant slayer! Or did he? Yes, of course, he was human. Maybe he didn’t need assistance with the physical until he was old, perhaps, but I think he made it pretty clear in the Psalms that there were times he suffered rather debilitating emotions.
Yes, I am coming to a point. My doctor says I have a disease which will become a disability. i remember my grandmother, in the nursing home, being lifted from a seated position by a mechanical lift, and taken to the bathroom. Sometimes I need assistance walking. My doctor diagnosed that I cannot walk more than 20 feet without assistance. I had to use wheelchair service at the airport when I flew home from Cleveland. Society looked at me and said, “That poor, young girl has a disability.” (Okay I’ll be 37 shortly, so I’m still pretty young!)
But God says, “Child of mine, I made you exactly the way I wanted to make you. You are wonderfully made. The world may see a disability, a flaw, an imperfection. But I see something I can turn into good for my glory. I knew this was coming and it has already been accommodated for perfectly. So you just rest your little heart and body in knowing that everything is going according to plan for my glory.”
I’m not a weirdo, well maybe I am a little bit, but I don’t hear voices or anything. God didn’t actually say that to me. I just imagine Him saying something like that to me based on what I know from His promises in the Bible and from my personal relationship with Jesus. By the Grace of God, I know my King!
If you know anyone that would benefit from this blog, anyone who is also wonderfully made, please pass it on. Not because my writing is setting the world on fire (please!), but because I want to share the love and glory of the One who is able to do more than we can ask, hope or imagine.
Thanks for Reading. Journey with me.