Mito, Music, Me, and Thee

Don insisted on joining me for coffee this morning, even though I wasn't awake enough for words. I'd stayed up late surfing the web and sorting through weird thoughts. So he munched a bagel while caffeine brought me to life.

Background worship music muffled his chewing which gave me time to sort through what had me bound. Once dressed with brushed teeth, I finally figured it out, voiced it to him, and began the day in earnest.

After a few lessons, some writing, and a trip to Sam's Wholesale Club, I'm nestled on our screened in porch, listening as nature serenades the setting sun. I could almost just close my eyes, stop typing, and melt into the sounds of spring. But if I don't post something in four hours, I'll have only blogged once this month and I can't let that happen.

Besides, we saw God's Not Dead Friday night. And while I highly recommend the movie, as we drove home, I battled that dreaded feeling that I'm behind, unable, messing up my own dreams, etc.. Viewing others creativity reminded me of how lacking my own is.

No matter how well I rationalize my life, I cycle through that pit every now and then and fight for perspective.

Who cares that I've seen a knee doc, the podiatrist who did my ankle surgeries, and another orthopedic specialist all in the same month only to learn that my right hip joint is loose. Who cares that perimenopausal issues have drained low energy reserves and left me napping more than usual. Who cares that I'm teaching more than I have in months and feel drained after hours with students.

When I look at it in black and white, I understand why writing and creating often take a back seat to surviving.

But I also realized there's a lingering fear of failure. Boxes of my CD's fill a corner of our basement and while we've sold quite a few, the thought of writing a book or finishing my musical and having more creative output sit around makes it easy to click on NCIS and Castle reruns instead of crafting my own words.

But I can't cave to fear. I can't let unknown results stop forward momentum. And that's what I figured out this morning. So I'll finish that musical and go from there. Just like I'll keep taking one step at a time, with my knee brace on to stabilize my hip, not knowing which one may push the limit. Safe on my porch where the birds sing and the breezes blow, I'll write till there's nothing more to say.

And that will take a while.

I spent a few days revamping my website this month. It now combines information on mitochondrial disease, links to my music, and stories never published. So I'll close with the link:

Living Here and Now with Adult-Onset Mitochondrial Disease

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Rare Disease Day

Cavalier King Charles Spaniel Dog Mug 

Lily dog (my mom's King Charles Cavalier) stirred, stretched, and gently laid her neck across my face, almost smothering me this morning. I wiggled till my nose found fresh air and then enjoyed her soft, gentle, "Good morning, I'm awake" routine. When Don noticed my eyes had flickered he added, "Do you want me to push your coffee button?"

With that I decided to wake.

When Lily's tummy had been sufficiently rubbed, I rolled over and checked my phone: the time, email, headlines... Facebook. And there in a recent post I saw this question:  "How behind do you all get with housework? I feel like I'm failing at life...."

The author's words voiced my tired thoughts. I don't write enough. Read enough. Clean enough. Cook enough. Show up enough. Study the Bible enough. Pray enough.

Instead, I go to doctor's offices, take naps, swallow pills, and measure each step to ensure I don't take too many.

In some ways I've learned to be content with my life. But deep, deep down, I constantly fight the feeling that I'm always behind. Always slower. Always handicapped.

And I am.

Because, like the woman who shared her frustration this morning, I live with a rare disease.

While I recognize my limitations aren't nearly as severe as others, since yesterday was world wide Rare Disease Day, I'll highlight the universal struggles many in this community face:

1)  Our slower speed leaves us susceptible to feelings of failure. We can't keep up with the Jones'. Not even close. But since we look relatively normal, folks have a hard time accepting our life in the slow lane.

2) Doctor's rarely understand our issues which leaves us balancing the need to educate without overstepping. I had three doctor appointments this week. Not one knew about my disease. The first even stated, "You must not REALLY have mitochondrial disease because you'd be dead by now if you did." I explained that there are different grades to mito, similar to cancer. If you're diagnosed as an infant, yes, your life expectancy is short. Having been diagnosed as an adult, however, means my life will most likely just be SLOW (and full of doctor appointments) but not necessarily shortened in length.

3) With the high cost of supplemental medicines and prescription drugs, finances are always strained; isolation a constant battle; and simple tasks often a monumental undertaking.

The one thing I've learned to value over time, however, is the fact that slowness allows for concentrated focus on the divine. But it's a constant battle to breakthrough the heavy clouds and celebrate blue skies.

Still, no matter what I feel inside or see overhead, the son shines bright, day and night.

And in honor of Rare Disease Day, if you know someone who fits the bill, buy them a cup of coffee, or a movie pass, or an inspirational card. Remind them, through your act of love, that they're not alone.

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