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.