It’s Been Ten Years… So Why Am I (still) Alive?

On the day before Thanksgiving, 2013, in a closet-sized, moldy-smelling exam room, a University of Michigan pulmonologist confirmed my fear: the shortness of breath I’d been experiencing was due to a rare, progressive, degenerative, and often terminal lung disease, Lymphangioleiomyomatosis (LAM). Paul and I sobbed the entire drive home from Ann Arbor.

Not surprisingly, a rare disease doesn’t draw the research dollars compared to something like, say, cancer. I get it. Why put out a toaster fire when a whole city is burning down the street? Lack of research funds translates to a lack of up-to-date information as well as a cure. So even though sources were minimal, I scrambled to learn everything I could about this unwanted guest residing in my lungs. Most everything I read at that time suggested women with LAM (it’s a sexist disease – only women get it) had, on average, 10 years to live from the time of diagnosis.

Attempting to make sense of my imploded world after learning my years on this planet would be reduced, I wrote a blog about it and it kind of went viral. You can find that original blog here. And now, as someone shocked to still be alive, I feel compelled to revisit that original blog. Although it reads like a re-imagined list of life priorities, in actuality, it was a simple attempt to find the meaning of life. I had to. I’d been handed an “expiration date,” and I would never again have the luxury of NOT thinking about how I’d spend my precious days.

A humbling and unexpected experience these past 10 years has been watching from the sidelines as many, many other women with LAM have passed away. Especially during COVID. What a gut-wrenching time as numerous LAM-sisters lost their lives (don’t even get me started on how I believe society failed us, the vulnerable…) And for mysterious reasons most likely tied to hormones, LAM tends to spread more quickly and be more severe for women under the age of 40. This means that often, the deceased are younger than me. These precious ones are taken to heaven during child-bearing years – often leaving young children behind.

So what the heck am I still doing here?

Why them and not me?

New Thoughts for a New Decade

It seems to me God chose the wrong “mama” to take home. Why wouldn’t he take the one who has lived more than half a century and watched all her children enter adulthood than the one in her 30s with small children at home? Did God goof?

This line of thinking has kept me up at night and given me many a migraine these past 10 years.

NOT the reasons I’m still alive:

I always believed our single most important purpose here on earth was to bring God glory. I think, like the good Calvinists we were, we learned about “saved by faith alone” at a very, very young age so that we didn’t freak out about trying to please God and think our salvation depended on it. But simply glorifying God can NOT be why God keeps me (and you) here on planet earth. Because, if he truly just desires our praise and glory, he’d receive it even MORE PERFECTLY and MORE ABUNDANTLY from us in heaven. Here on earth, we fall short and screw it all up much of the time. God would have us all at his feet in heaven if glorifying Him is all we were created for.

Other Christians tell me that we’re supposed to just be grateful and bask in God’s beauty and goodness. They say that by doing this, we please God and that THAT is the meaning of our existence. Be HAPPY, Be THANKFUL, and WATCH more sunsets, they say.

I find that sorrowfully lame as well. For one, I’m not so sure how I feel about the “goodness of God” anymore anyway. I think, as is clear in the Beatitudes, that HIS definition of “good” is not the same as OURS. For another reason, I feel like we wealthy, privileged, and first-world Christians love to use thankfulness as our panacea. We dodge the responsibility of leveraging all our “#blessings” to help “the least of these” by incessantly repeating how darn thankful we are.

What would SHE say is the reason I’m still alive?

I can’t stop thinking about what one of my younger deceased LAM-sisters (that’s what we call each other) would say to me. How would she, as one who passed away in her 30’s and left behind several young children, feel about me and my choices, as one whom God spared and has made it to 57 years old?

If it were possible that this LAM-sister could watch me from heaven, would she be pleased that I spend all kinds of hours feeling sorry for myself? Would she say I’m living my best life as I watch more HGTV or reruns of Friends? Would she want me to obsess more about shopping – buying new cars, better clothes, and bigger homes with my bonus years that she was robbed of? Would she think the hours I spend taking care of all my “stuff” and buying more “stuff” is honorable? Would she be supportive of God’s decision to take her home early yet spare me as I hold grudges, argue with my husband, gossip with friends, or spend hours trying to change someone’s political bend?

Just the thought of all the ways I cheapen this existence – this ONE PRECIOUS LIFE, while she, my LAM-sister doesn’t even GET an existence, sickens me.

When I wallow in self-pity and pilfer away my days in meaningless activities, it feels to me, that in some way, I’m dishonoring the legacy of my LAM sisters – or of anyone who has gone before me who really should still be here on earth. I feel that if I’m not living my best life, I’m basically saying to those deceased: I don’t like the gift of life I’ve been granted. I’d rather be you.

The Good Life

It’s such an existential question: what are we here for? As I write this blog, I’m finding it much easier to identify all the things I am NOT placed on earth for. But when I parse out those things, I’m left with a conclusion that makes me tremble. I’m left with the conclusion that there IS STILL SOMETHING LEFT FOR ME TO DO. Not to just simply be, but to BE fully alive and DO something. Which begs the question: How do I know if I’m fully alive?

I don’t know.

I often think I’m really living and living abundantly. But then I see other people (Christians) who are doing it so differently from me and are as equally convinced that they are the ones actually really living.

But what I do know – and you know this, too – is that there are these holy-moment times when we feel very much alive and we don’t want them to end and it’s almost as if we can feel God smiling down on us. For me, those moments are when I:

• Sit with a patient at my psychiatric hospital who may be battling things like suicidal ideation, anxiety, depression, anger, fear, hopelessness, or helplessness, or any number of mental struggles, and just listen to them. Not necessarily speak – but just sit with them in the moment.
• Sit oceanside and get all caught up in the mystery and massiveness of a God who holds the oceans in his hands and cry my eyes out for at least an hour.
• Scoot my 2-year-old granddaughter down the sidewalk in her Little Tykes cozy coupe and pretend we are going to Costa Rica to sell strawberries, but then abruptly stop because she sees a yellow wildflower and yellow is her mama’s “favowite.”
• Watch a sunset over a small inland lake in the middle of Michigan with my high-school sweetheart whom I’ve now been married to for 37 years.
• Give with extravagant generosity – more than the world would say is prudent.
• Soak in the chatter when all four kids, their partners, and grandbaby have gathered in our home and I hear them cover things like Israel/Gaza, refugees, which breed is better: weaner dogs or Bernadoodles?, who’s the best SNL character ever, a new book release by Jedidiah Jenkins, best practices in sourcing quality coffee, the takeaway from the morning’s sermon, and does anyone want to go to the border and learn about the crisis firsthand from a non-bias, NGO?
• Walk. Whether in the flower greenhouses in the spring, Meijer Gardens in the summer, the woods in the fall, or our neighborhood in the winter after a fresh fallen snow. I FEEL God when I walk.
• Spend time with the six junior high girls in my small group at the Potters House School
• Tell Alexa to play a random favorite worship song and instruct her to “turn it up” so loud that the walls of this old former crack house just shake in worship along with me.

So while I may have failed at planting more trees and visiting our local nursing home regularly (goals from my blog 10 years ago), I’m learning there are definitely some actions that bring light and life (either to me or to the life of others) and, in return, make the world a better place to be.

I want to be all about ACTIONS that bring LIGHT and LIFE. I want to do more than just “be” and kill time until Jesus calls me home. I want to DO some things.

WAIT A MINUTE! Can Saved-By-Faith Christians actually SAY THAT???

There was a time when Paul and I sold just about everything we owned, packed up the four kids, and moved abroad to just live for Jesus in a place where not many others do. Somewhere during that time, someone told us we were “works righteous.” In other words, they suggested our actions indicated we were trying to EARN God’s gift of salvation. That accusation stung hard and burned deep. And I still reflect on it. Why does it still hurt? Because for the life of me, I can’t NOT DO things. It’s what gets me out of bed every day. It’s what I feel deep down in my bones – that whenever and wherever it is possible, we have been called to DO something that matters.

In general, I find it is the Christians who would rather not DO anything difficult or unsavory, who like to call “foul” on their fellow believers in action.

It seems to all come down to this: Love God, Love others. The Bible seems very clear to me on HOW we are to love others – to care for the poor, the widow, the orphan, and the alien in our midst. To love our neighbor as ourselves. THIS, to me, is the life well lived. Not necessarily the easy, comfortable, feel-good life – but a life that matters.

Don’t get me wrong. I do not think God demands us to live a life void of pleasurable things that simply exist to make us happy (think sports, entertainment, food, etc.). I think he maybe even takes pleasure in watching us be pleased. BUT… WHAT IF… WHAT IF we were most pleased by our actions of loving others??? Then, our “pleasurable experiences” would be the ACTUAL things he has CALLED us to do in this life!

Maybe we need to recalibrate what brings us pleasure and joy.

Maybe THAT is the intersection of our great joy and God’s great joy.

 God-Breathers

Our pastor once taught us about YHVH – the Jewish name for God. It was a name so sacred, that Jews couldn’t even say it out loud, they only breathed the word. And, ironically, YHVH is the actual translated word for BREATH. So, the name of GOD, which they dared not say, but only breathed, is the word BREATHE!

So, if I’m still alive and every single breath I take is actually me breathing in and out the very name of GOD, I can also conclude that as a God-breather, I am to blow my breath towards all those who do NOT know God and do not know from where their breath comes.

Now THAT is a reason to still be alive!!!

God-breathers, WE are God’s plan for this earth, we have a purpose, and we’ve been called – oh, so clearly – to bravely breathe the message of God to others. ALL the others. And love them. Love them with a costly, extravagant love for as long as we have breath.

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