Krisi’s Little Friend

"When it comes to death, don't let me linger."

My little friend. I don’t know if that is a cliche when it comes to illness, but it’s what pops into my head every time I think about this new diagnosis. The truth is, there was never a time in my life that I didn’t have it - it’s always been a part of me - I just didn’t know it. I could have pursued knowing, but I just wasn’t ready. But now I know, variant c.2864A>G, also known as POLG, also known as mitochondrial myopathy. A disease I am very familiar with, it has been a part of our family story since I was small. Even though my dad had progressive symptoms that ate away at his muscles over time, I did not let myself consider that my issues were the same, at least not out loud, at least not often. I’ve always been weaker than most, always used my eyebrows to lift my eyelids, and more recently, believed my tired eyes were due to a bad glasses prescription.

But here I am now, and I cannot pretend anymore or ignore the reality that has always been true. I have the disease that slowly killed my dad. I am not invincible or immune. I am special in a way — I have won the rare genetic lotto. It was a 50/50 chance I’d get it, and the coin landed up.

What happens next? There is a lot of grief if I’m honest. I don’t like weakness, I don’t like pity, and I hate slowing down. My mind is always running faster than my feet, I’ve got plans and ambitions. I know how I want to live and how I want to retire. But the facts are, some things in life we don’t get to choose. Some things in life we don’t get to get out of, there are facts that cannot be cured or changed. So what do I do about it?

I always have a solution, its partially why I am good at my job. There is hardly a blocked road for me, I can find a way and I can do it myself. Or I thought I could.

A few weeks ago Eric and I were driving to the Pacific Northwest, one of our many long road trips, and a tiny pebble bounced up and dinged against the windshield. It left a crescent shaped crack in the glass. A local repairman said he could seal it with a blowtorch. Five days later the crack was two feet long.

Sometimes your shield cracks. Sometime you get a chip and a blowtorch won’t fix it. I am used to doing things at 2X speed. I like being busy and exploring my city and the world around me. But now I have to learn how to slow down, I have to be okay with sitting on the sidelines sometimes.

I have this deep fear of any activity being the last time I ever get to do that random thing. Like I remember my last cartwheel, it was July 4th weekend in 2016 and I pulled my hamstring. I don’t like thinking the thought “this could be the last time…” so I try to do everything I can, and feel like I can do anything I want. Climb Mount Whitney, maybe I never would, but don’t tell me I can’t. Become a chef in Antarctica? See ya ext Tuesday.

My dad’s world got smaller and smaller, one activity at a time. I am terrified of all the possibility I will miss out on, of all the exciting bites around the world I will never get to taste. I have an insatiable desire to move, and now I have to learn to sit still — just a little.

Life is far from over, but it will be different. There will always be a last time I go downhill skiing, or a last time I try to make stuffed squid. Maybe a few less backpacking trips, slower travel, quieter weekends.

The world is rich in the quiet spaces. I don’t need to be afraid of the stillness.

This will just be a little friend that lives with me for as long as I should live.