For the first time in a long time, I feel ashamed, small, and meek because of my God. That is as far opposite as a Christian is supposed to feel, much less admit and testify to. We’re only supposed to highlight the good and trust in the best, when really we feel completely abandoned and embarrassed that our God wasn’t as powerful as we thought. I know it sounds awful. Try having it in your heart and come from your head. I am the worst disciple on the planet. Try hearing it over and over when you really just wanted to believe you did have faith in the one true God. Everything comes into question.
I recently jumped out of a plane. I seriously got my mind around the concept of skydiving. My anxious, control-freak self was able to get my brain beyond the roadblock of fear some might face when jumping out of a plane at 18,000 feet. I am an “extreme athlete” now. Sort of a big deal. Ha. It’s a peculiar thing, this skydiving. My biggest take-away, beyond the physical nature of falling through sky, was how powerful my mind can be. If I can do this one thing, I can do lots of other things. Right? In reality, though, this is it! There are not lots of other things I am going to do or will get to do, no matter how well trained my brain is.
Behind the scenes of my husband’s fortieth and launching myself from the clouds, I had some blood work done for a pretty rare, seemingly unlikely disease. I had tested positive for it once before, and it was the last real feasible suggestion we had at why I was struggling so much with my legs and pain right now. We definitely noticed a decline in my walking starting in October 2018. It was originally treated as sciatica without relief. 10 months into it, I am pulling my cane out on long walking trips, and learning which drugs help the most when the spasms and stiffness kick in like mad. I am getting better at dealing with it, but it still sucks and is progressing to include both legs and bigger spasms.
Long story short, this last test was negative. I knew it was a double-edged sword, this last lab… if it was positive, it would offer the chance at a new hope, even though it would come with a crappy diagnosis. Of course I don’t want the disease, I just wanted a chance at feeling better. The first appointment at my new neurologist, last August or so, she told me I had a “mild” case of MS. She told me this spring that my leg and walking problems aren’t presenting the way they should for MS. I just can’t see myself going back to her begging her to see someone who is more than just “mildly” ill with dramatic leg pain she doesn’t get. Why does that have to be a battle?
I didn’t medicate with any of my pregnancies. They wanted to send me home when I came in with my first because I wasn’t scrunching my forehead enough during contractions; I wasn’t expressing enough pain to indicate labor. They found out, real quick, when we came back that I wasn’t messing around.
I wish it was easy to tell the doctors you don’t feel good and actually get help. There was one moment I had, in the long history of trying to figure out what is wrong with me – remember, I was told I was crazy on my 23rd Birthday by Idaho’s self-proclaimed “lead MS doctor” (insert vomit face here), and I wasn’t diagnosed with MS until I was 34. I was helped at the Mayo Clinic in Scottsdale, Arizona. That is not the point. The point is, there was this one resident, a young gal, and she was doing her exam of me and we talked about where I was mentally.
At that time a pastor in our town had been diagnosed with a throat cancer of some type. He had two possible outcomes: he would go to heaven or he would live. I told this doctor that he had better options than I did. She said, “Are you saying it would be better for you to die?” I answered, “It would be better for me to die, than to continue suffering the way I have had to.” She took me real serious. She went out of her way to get a spinal tap done and that test was the one test that was positive enough that I would get help.
“Help” was hopeful in the beginning. There were options. But, now without as many of those options, and the steady pain in my body, the help available to me is no longer enough. The hope fades fast.
The realization that God doesn’t have a plan for me to prosper or to be healthy are hard. The realization that God is okay with the pain I’ve had and the pain that will come is hard. He is all powerful and could stop it, but found someone like me, who deserves it… and that just makes lots of tears.
Today, all I have to offer God is a pretty broken heart. I am the worst possible poster child for a “be all you can be” Christian message of any sort. Today all I have are a lot of tears as I look forward to the future. There is a very small way for me to keep my shop, but I am not going to be able to keep up physically doing the work I enjoy. It is humbling to know that this is the plan God has for me. It feels incredibly difficult to get my brain around all the painful days left in my life without even the hem of his garment to dry my eyes.