Terminal Illness

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

November 22, 2023 by Cindy DeBoer 10 Comments

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.

Leaky Breasts and Other Hot Messes

April 13, 2023 by Cindy DeBoer 2 Comments

Recently, while at work at the psychiatric hospital, I caught a glimpse of myself in a patient’s bathroom mirror and noticed a large wet spot on my t-shirt just below my left breast. It was an odd location for a spill, but I chalked it up to my clumsiness and threw on a hoodie to conceal the spot. But minutes later, I felt wetness on my right side, too. I snuck away into the bathroom and peered under my sweatshirt. Sure enough, just like a breast-feeding mama who forget to put her nursing pads in place, I had two huge wet spots under both my breasts.

My heart picked up pace and I felt flushed. Something was wrong. Very wrong. Not only can I not even REMEMBER those breast-feeding days, my chemo-riddled body is decidedly void of hormones that might stimulate lactation.

Now, a psych hospital is a dizzying busy place that offers no time to “deal” with such a situation. I pressed on in my work and did my best to feign a “caring nurse.” Honestly, I didn’t care about anybody anymore – I just wanted to know why the heck my boobs were leaking! My t-shirt grew more and more soggy as my shift wore on. I secretly took my pulse, temperature, and blood pressure. All normal. I tried to convince myself I was fine. But as soon as I could steal a minute away, I Googled, “Why are my post-menopausal breasts leaking?” My heart sank as I discovered there’s no reason EVER that old ladies’ boobs should leak. Except cancer.

I don’t know how I made it through those 8 hours at work. I was certain I had cancer and I was certain this was the beginning of my end.

Once home, I shared me news with Paul and told him it had to be cancer. We shared a few somber moments of quiet fear. This wasn’t the first time I’d been certain of pending doom, but this time really did feel ominous.

This is my shirt when I got home from work.

I purposely procrastinated on calling my doctor the next morning. I wanted one last day of living without confirmation of cancer. Grief hung around my neck like a chain of bricks. I cancelled lunch with a friend. I lied to my daughter and said I didn’t have time to talk. I googled some more things which nudged me further off the cliff of despair. By nightfall, full-on hysteria had set in. All I could think of was all the things I’d miss by dying so young: my daughters getting married, meeting our future grandchildren, publishing my book, and family vacations and holidays. And – worst of all – I didn’t want to die before my sweet mother. She’s already lost one daughter way too soon, I didn’t want her to suffer like that again.

Totally exhausted from whipping through ALL five stages of grief – denial, anger, bargaining, depression, acceptance – in less than 24 hours, I decided to decompress with a hot shower. While there, I looked down at my tired breasts and thought, “Man, they sure don’t look sick. It’s so weird that these two things that have served me so well, are going to be the death of me.”

And that’s when I received my shower epiphany. I suddenly wondered if these worn-out breasts weren’t to blame after all. As quickly as I could towel-dry, I ran downstairs to our laundry area and picked up the bra I had worn to work the night before. I grabbed a scissors and without any reserve of destroying a perfectly good $50 bra, I cut into that sucker and the “gentle padding” that lined the cups. My heart sank when the padding was only that: a “barely there” bit of thin foam. However, something prompted me to go full-on surgeon and rip into the center of the foam. Lo and behold – there, at the center of the padding was a little thin plastic case of nothing. It held NOTHING, because the SOMETHING it once held had already leaked out all over me and my t-shirt at work!

That stupid old bra of mine had probably been worn and washed so many times that the little silicone “enhancer” pads had basically cracked – bathing me in silicone juice.

Who thought this was a good idea to hide silicone pouches inside a piece of foam? Definitely a bra made by a dude.

So, it doesn’t look like I’ll be dying today, anyway.

Now, there’s two ways to process this leaky breast ordeal – either I’m an idiot OR… I’m just suffering from some form of PTSD like the rest of the world and will hastily jump to “the sky is falling” when there’s the slightest inkling something is off. I prefer to believe the latter.

It’s true though, isn’t it? Aren’t we all on edge? In no way am I suggesting this is akin to military-service PTSD. Not even close to the same thing. But it is feels to me that we, all humanity, is experiencing many of the symptoms that categorize PTSD. No one is sleeping anymore. When in public, our hearts stop at every loud “pop” or “bang” thinking we’ve just been shot because, well, there’s a good chance we have been. When people cough or sneeze into our personal space we wonder if we’ve caught the next deadly strain of COVID. We turn on the evening news with fear and trepidation wondering what terrible thing a leader has said or done, or what natural disaster has laid claim to unsuspecting regular people, or what new inciting incident will now add to our growing racial divide? It’s like we’re all expecting Freddy Kreuger to walk in on us at any given moment. Every day there is something, isn’t there? Something that adds to our unrest and builds our stress-level.

So how do we live peaceably in this world full of turmoil and conflict?

Oh friends, I’m not even talking to any of you anymore. I’m full-on talking to myself now.

I’ve got to take my own medicine. As a psychiatric nurse, I often give my patients advice on how to “wind down” when they are all “wound up.” My best tips include things like deep breathing exercises, reading scripture, go for a walk, talk to a trusted friend or family member, connect with nature, do something kind for someone else.

But my number one piece of advice to my troubled patients in these troubled times and which I’m currently desperate to receive is this:

GIVE YOURSELF GRACE.

It’s okay if we’re not okay. For now, it’s okay to acknowledge we are struggling.

It’s okay if tasks take a little longer than we’d like them to.

It’s okay if we’re forgetting things more often than we used to.

It’s normal if we’re not sleeping as well as before.

It’s okay if we’re not “sprinting” out of the fog, but instead feel more as if we’re crawling.

It’s okay if we feel our faith has been rattled. That’s standard fare for PTSD.

It’s perfectly fine, healthy, and good to be seeing a therapist and we need to put an end to any stigma associated with mental self-care here and now.

COMFORT FROM SCRIPTURE

“Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.” Philippians 4: 6-7

Amidst such a tumultuous time in history, it’s not going to make sense when we find that peace, friends. It WILL surpass our own understanding as well as that of others. But, it’s that EXACT radical and unexplainable peace that is ours for the taking.

I’m thinking I need this verse tattooed on my forearm or something. I certainly forgot all about it when my bra burst.

We’ve been through a lot, friends. Life has just been A LOT. And there really isn’t any sign on the horizon that things are going to get better this side of heaven. Our only hope going forward is to trust the promises of HE, THE ONLY ONE WHO CAN BE FULLY TRUSTED.

A FINAL GIFT TO YOU

If I can leave you with just one positive thing today, let it be this: Put this song on your favorite listening app and play it over and over and over until it gets stuck in your head like Baby Shark or It’s a Small World:

Andrew Peterson’s: Be Kind To Yourself.

And if you’re looking for a new tattoo, this part of the song, where Jesus is speaking, would make a good one:

You can’t expect to be perfect
It’s a fight you’ve gotta forfeit
You belong to me whatever you do
So lay down your weapon, darling
Take a deep breath
And believe that I love you

Same Kind of Wounds as Me

April 7, 2022 by Cindy DeBoer 20 Comments

I noticed her and those tell-tale marks on her face from far across the room. At the first break of our writer’s conference, I ran over to her, breathless with anticipation.

“Hey, I don’t mean to be weird or anything, but I notice that you have nasal cannula indentations on your cheeks, and I know that means you wear oxygen at night. I usually have those marks on my cheeks, too, but I didn’t have a portable tank to take with me, so I’m sleeping without it here at the conference.”

She didn’t even hesitate. She reached out and lovingly – knowingly – hugged me. We had an instant bond. We chatted non-stop for 20 minutes. We both have debilitating lung diseases for which there is no cure. We were both feeling a bit discouraged at this conference because it was set in the mountains at a high elevation and the campus was very hilly – two things that make people with sucky lungs cringe.

It has been a hard two years for both of us. We were both told by our physicians that COVID would not be kind to us, and we needed to avoid it if at all possible. We both felt isolated, lonely, bored, and angry after two years of this COVID nightmare. We shared sadness about strained relationships. We admitted feeling unloved, devalued, and discarded when people we loved diminished the devastation of COVID and refused to take precautions on our behalf.

The tears flowed uncontrollably and I think I made a blubbering scene for onlookers.

As two people with lung diseases amidst the worst pandemic in the modern world, we both also suffered from PTSD and I know, for me, I desperately NEEDED her. But here’s the thing: I didn’t know how much I needed her. I had open, oozing, un-attended wounds and didn’t realize it until she walked in the room. Seeing her just made me acknowledge I am hurt. I am suffering and I need someone who gets me.

I didn’t know how deep my wounds were until we started talking and shared all kinds of bottled-up emotions.

Later that day, I mused how my view on those nasal cannula indentations had changed. I’m no longer embarrassed by them. I’m glad I have them so that others who are oxygen-dependent can recognize me as someone who shares their wounds. I also mused that it would be kind of nice if people wore baseball caps emblazoned with a logo of the wounds they carry to help us all identify one another. I’d like the people with the following wounds to wear identifying ball caps so I could find them more easily:

Not loved all that well by my daddy.
Spent our kids’ college funds and our retirement funds on living overseas because we refused to raise support just to live like Jesus, for Jesus’ sake.
Gains weight even if I swallow my own spit.

It is through the sharing of our pain and truly being known and understood in that pain, that we can begin to find healing.

And what about you, my friends? What wounds are you carrying that no one can see? Who is it that you need to meet just to feel that you are not so alone in your woundedness? Therefore, what kind of logos would you want to see on someone’s ball cap that would make you want to run to them, hug them, and say, “YES! Me, too! Me, too!”

Ball caps that said:

Abused as a child. No one knows.
My spouse is cheating on me.
I drink my troubles away. Every day.
We want a child, but can’t get pregnant.
My business partner takes advantage of my hard work ethic.
I don’t think I love my husband anymore.
I don’t have any friends.
I’m six months pregnant and just found out our baby has Down’s Syndrome.
I secretly dream about running away from it all.
I’m depressed and have fleeting thoughts of suicide.
I have a prodigal child.
Had an abortion in high school that no one knows about.
I have cancer and I don’t feel like fighting it anymore.

Finding someone with the same kind of wounds is good, life-giving, and necessary. It’s also biblical:

“Bear one another’s burdens, and thereby fulfill the law of Christ.” Galations 6:2

“A new commandment I give to you, that you love one another: just as I have loved you, you also are to love one another.” John 13:34

“Be completely humble and gentle; be patient, bearing with one another in love. ³Make every effort to keep the unity of the Spirit through the bond of peace.” Ephesians 4: 2,3

“Do not withhold good from those to whom it is due, when it is in your power to act.” Proverbs 3:27

So here’s the deal, fellow sufferers – unless we get real with one another and share our woundedness, NO ONE WILL EVER KNOW and the healing that is available to us, through Christ and his people, won’t be known in its fullest form.

Unless we have nasal cannula marks on our faces or choose to wear a baseball cap with a bold logo, NO ONE KNOWS OUR WOUNDS.

So, may you, by the grace of God, find the strength to share your wounds with a few trusted souls. May you find that the sharing of your wounds exposes those hurts and pains to the light where the light can chase away the darkness. May you find some inner peace as you let out that which has always been bottled in. May you know that the God of all creation created other individuals WITH YOUR SAME WOUNDS to be there for you when you are feeling alone – you need only to reach out to them.

Don’t be ashamed of your nasal cannula indentations. They may be the very thing somebody needs to see today to bring about their healing.

Ode To A Lumpy Body

February 18, 2022 by Cindy DeBoer 16 Comments


Hairy legs and sun-burnt nose
When at the beach, anything goes.
Unbrushed teeth and happy-hour drinks
This much I know: my breath stinks.
Fish for dinner plus a fruity potion
Diet be damned, I'm at the ocean.
Sand in my bed, and in my salt-fried hair,
Sir, what is the time? Wait. Why do I care??
It's here that I feel no virus, pain, or LAM -
Must be the thick presence, of the great I AM.

Just a couple of days ago I slipped into my new bikini and Brenda and I headed out for a walk along the Gulf of Mexico in Puerto Vallarta. We felt so important – staying at a swanky resort where budding American accountants and their wives went to feel more successful than they actually were.

We turned the heads of both the locals and tourists. We heard the comments – the catcalls – and laughed at the power of the female anatomy. Perhaps we did stick out – both young, fresh blondes in our little bikinis. And Brenda is tall – really tall – and her long, lean legs stop somewhere around her neck. I’m not tall, nor would anyone ever describe me as “lean,” but I don’t think people gouge their eyes out when they see me either. Some of our admirers even followed us into the bars at night and tried to dance with us. Our husbands just laughed – knowing they alone held our hearts.

Then a few days passed.

Today I slipped on my Grandma-style black bathing skirt and floppy top – a two-piece ensemble designed to masquerade the wrinkles, bumps and lumps of old ladies. When I finally put down my reading glasses and book on racial reconciliation and headed out for my daily beach walk, I had an indescribable sense of peace. There was no need to “suck it in,” apply lip gloss, or make sure my skin was shiny with tanning oil because nothing I do at this point improves the situation anyway. I don’t turn heads anymore and I’m not mad about it. It’s so much easier and freer these days. But as I watch all the bikini-girls walk on by, I think to myself, “Oh I remember those days. That was just a couple of days ago for me.”

And in between those couple of days this body did a couple of things. It grew five babies in its womb. Three of them made it out alive, two went directly to heaven and we never even knew their gender.

And both the joy and the sadness of each of those babies resulted in wrinkles and a little less “perk” to this body.

This body wiped about a million butts. Between my own babys’ butts, butts at the nursing home, and butts at the hospital, a million could be a bit of an exaggeration, but it’s a ridiculously high number.

And all those many, many nights of getting up with babies coupled with the graveyard shifts at the hospital working in the ICU and caring for precious souls whose actual LIFE hung in the balance just piled on the wrinkles, the eye-bags and overall “sagging.” Some days it was as if I could physically FEEL my body sagging as I drove home from the hospital, bearing the burdens of deep sadness experienced in the ICU.

This body packed up four children and an entire household 11 times. Four of those times were to and from far away countries. This body has slept in tents, in negative five-star hotels, under the stars and on the floor of the Sahara Desert.

And all those achy muscles and bones from asking this body to go above and beyond its normal strain left this body a little more worn and limping. More bumps, more bruises, more sagging.

This body has cried alongside Syrian refugees and widowed Guatemalan women. It’s heard the stories of Jews living in a kibbutz and Moroccans living in shantytowns. It’s befriended the homeless and the helpless, those that have much and those that will never have any. It’s worked tirelessly to bring peace and comfort to the psychologically challenged. And currently, it grieves for Afghanistan and her people, those picking up pieces of their lives after a natural disaster, those affected and infected by COVID, and those who have misplaced their peace because of internet lies. But this body has never given up hope that the shalom of Christ is possible here on earth.

With each new discovery of the world’s many crises, its needs and its sorrows, this body sagged a little further. It sagged even as it considered all the possible ways to help make a difference. Believing change can happen and working hard to BE that change, no doubt, is exhausting.

This body has held the hands of many people as they took their final breaths – patients, close friends, and dear, precious family members. This body – specifically the heart and soul – has suffered more grief and loss than I thought a body could bear.

And I’m quite certain the most wrinkles, the most wear and tear on both the inside and the outside of this body have come from the sorrow. Sorrow, I believe, ages us the most.

Then a new shock sliced me open. This body somehow developed all kinds of holes in its lungs and now this body doesn’t breathe very well anymore. This body sometimes tells me it’s wearing out (like on the hot, humid, Michigan summer days, or when faced with more than 20 stairs) and it doesn’t feel like putting up a fight anymore.

And with each labored breath, I feel the work of this entire body doing its thing. Pumping its limited supply of oxygen where it’s needed the most. The work, the strain, the fatigue = more wrinkles, more sagging, more bumps and lumps as I sometimes eat my way out of the despair.

This body has served me well and I sure hope it doesn’t sound like I’m complaining. None of these bodies we inhabit were made to last forever and perhaps my temple expiration date is just a little sooner than others. This body has also lasted much longer than forecasted and the reality of that miracle is not lost on me.

Today, THIS body has earned its wrinkles, its sags and lumps and bumps and proudly walks the beach in the Grandma bathing suit because – OH WOW! – I’m alive!!! I would never want to go back to the woman who wore the bikini. My life is testimony to the beauty of the hard work done by my body.

Let’s celebrate these masterfully made bodies, friends. These are miraculous gifts that – in spite of things like cancer and cerebral palsy and limb difference and high cholesterol – house our heart and soul and allow us to breathe and love and care and serve. We may not have been given the body we wanted, or the body that’s as healthy as we’d like; but if we’re alive, then at least we HAVE a body and whatever it looks like, it’s a freakin’ miracle!

Let’s give God glory for these glorious bodies today, shall we???

Invisibly Dying – A Lament For Those With Chronic Illness

January 15, 2022 by Cindy DeBoer 27 Comments

Our ancient windows are no match for this stiff north wind.

Our curtains tremble – just like me.

Neighbors on both sides are sleeping. I know this for sure.

These urban homes practically touch – holding hands across shared driveways - making daily routines no secret.

But the rest of our quirky neighborhood will keep me company until about 3:30 a.m.

At which time even the college students sleep.

Not me.

Sleep is totally foreign to me – like Tajikistan or Uttar Pradesh – places I can’t even imagine.

Once again, I can’t breathe.

Is it the meds? Side effects? A lack of oxygen? Anxiety? COVID?

Tajikistan feels nearer to me than sleep.

A serendipitous encounter at the grocery store

And an old friend says I look great – but I know she’s shocked by the bags under my eyes.

So am I. They’re alarmingly large.

Go ahead and stare at my grey eye-barnacles – perhaps I even want you to. Because I’m not okay and sometimes I wish it were more visible.

I’ve given in to the fact I can’t keep up with the others.

Of course, I still WANT to run, and sing, and dance, and visit all the countries.

I WANT to clean my own house and cook my own damn meals.

I WANT to go back to work so we have more money to give away.

I WANT to go on every walk my dog thinks is necessary.

Those of us invisibly dying wonder how to tell you.

We worry if we tell you how we’re really feeling you’ll judge us for being complain-y.

We worry if we don’t tell you how we’re really feeling you’ll assume we’re fine.

We worry you won’t believe us because our hair isn’t falling out.

We worry you’ll tell us what miracle treatment your neighbor’s cousin’s daughter sought for her own bizarre disease that is nothing like ours.

We worry you’ll weary of our weariness.

So those of us invisibly dying pretend we’re fine.

It just works better that way.

There’s a good chance my body isn’t dying as fast as my mind.

My body is made of tempered glass – thick and durable, but still, it’s glass and it has plenty of cracks.

My mind is also glass, but the thinnest, most delicate, tenuous kind that cracks with even a nasty look. It shatters easily and often.

I tell myself to be strong.

I pray.

I ask God to make me strong.

I ask God to stop the insanity going on in my head.

I don’t know if he’s not listening or if this is just the best he can do, but I still feel insane.

I worry that my faith is wavering.

I worry what Jesus thinks about wavering faith.

I worry this is depression.

I worry if I tell someone that, someone else will throw another medication at me, and dear God, for all that is sacred and good, please no more medication. PLEASE!

I worry that I’m not making the most of my limited days – HGTV, Longmire and Ted Lasso stealing days from Bible Studies, serving the poor, volunteering at school, and other wholesome things.

I worry that even if the pandemic doesn’t kill me, it’ll still have zapped all my emotional, spiritual, and intellectual energy anyway and I’ll be useless for whatever years I have left.

If you’re invisibly dying, people just really want you to act normal.

Because if something’s invisible, we can choose if we want to believe it or not.

Like faith.

Like time.

Like Venmo.

Like COVID.

Like Jesus.

I’m pretty sure I would not prefer to be visibly dying.

To those who are, my heart bleeds for you.

I don’t know which is worse - the flippant sympathy of others who can obviously see you’re dying or being treated normally when you’re not normal.

But my lungs have holes in them and today I hear an audible wheeze that doesn’t even make sense to the doctors. And now I’m worried that this is the sound of oxygen leaking out when it should be going to my brain because nobody with a well-oxygenated brain would write such a sad diatribe. I regret it even as I write it.

But I do sometimes act like a person with not enough oxygen to the brain.

I yell too easily.

And hurt people.

And forget things.

Like appointments -

And promises.

And ideas.

And that which I want to forget, I can’t.

I can’t forget the reoccurring dream where I'm not wearing a  shirt or bra in public and even though I plead with everyone in sight, no one has anything I can cover up with. 
The relevance of that dream to this post is not lost on me.

I don’t care anyway. I’m invisibly dying.

I want to be the strong Christian who writes lovely things about faith and courage and strength and the way God always swoops in and saves the day.

I want to be the one people remember as always positive and encouraging.

And now I worry that I’ve just blown that.

Invisible is the worst thing to be.

I’d never choose it as my super power.

I’d choose flying for sure – so I could fly off to every country in the world and meet ALL the people from all the continents and learn all their languages, eat all their foods, study all their cultural practices and religions.

How can I show you, oh loves, that I’m still me?

How can you know that as I invisibly slip from this failing shell, I still want to laugh?

How do I tell you I ache, without you feeling sorry for me?

How do I let you into my darkness without darkening your world?

How do I let your light in without letting my darkness seep out?

Will we ever get this right?

Will I exhaust all my relationships with my exhaustion?

Will I run out of energy to find peace and wholeness before my days run out?

Will there be an actual heaven waiting for me that will make sense of all of this?

Will I be visible in heaven?

The more I come to terms with dying invisibly

The more I’m sure I see my invisible God.

What I used to only see dimly – as if looking through a thick glass*

Is now starting to take shape – the slightest imagery of something I've always known but just couldn't see - now new and afresh. Real.

And I don’t hate it.

Maybe today I seem visibly shaken.

Tomorrow, most likely, I’ll seem to have it all together again.

And that’s just how it goes when you’re invisibly dying.

*1 Corinthians 13:12

Thanksgiving Eve Sucks

November 25, 2021 by Cindy DeBoer 33 Comments

Sometimes holidays conjure up more pain and despair than joy and celebration. That’s true for me, anyway, on the day before Thanksgiving. It was 2013 and with the table set, the turkey stuffed, and pies complete, my husband and I spent the day before Thanksgiving driving to Ann Arbor to meet with a pulmonology specialist. She confirmed what we had already feared: I have Lymphangioleiomyomatosis (LAM) – a very rare, progressive, degenerative, and debilitating lung disease.

I despise the day before Thanksgiving.

And, in true fashion, this year hasn’t let me down. Although our refrigerator is packed with a 16 lb. turkey, every vegetable known to man, multiple pies, and drinks of every color, I cancelled the festivities for tomorrow because I (of all people who should know better) have had a significant exposure to COVID. While for the last two years I’ve done everything in my power to stay COVID free (which my doctor warned me would “not go well” for me), that little corona boogie man found me anyway.

I want to moan, whine, and throw apples at squirrels. I’d like to take about 10 Melatonin, crawl in bed and wake up on New Year’s Day. I feel like eating all the pies and using the gravy as a chaser. I don’t feel like being thankful for anything or anyone. And I sit here quarantined for 10 days just wondering if every little sniffle is the onset of the illness that will take me out, the very LAST last thing I feel like doing is creating a “Thankful” list.

Which is exactly why I must.

Before Ann Voskamp bestowed on us the beautiful posture of thanksgiving, our very own Jesus Christ had made it quite clear this wasn’t to be an optional thing (Psalm 100: 4,5; Ephesians 5: 18-20; Colossians 2: 6,7; I Thessalonians 5: 16-18 – just to name a few). To be honest, I don’t always like to do all the things Jesus told us to do and sometimes I get grumpy about it. But in this moment, in this debacle, in this wretched season of COVID, I don’t know what else to do or where else I’d go. I will choose thankfulness simply because He told us to be thankful not FOR all things, but IN all things. I will be thankful because he is God and I am not.

I am thankful that:

I’m still alive. Cliché, I know. But when I was diagnosed 8 years ago today, all the literature said that women with LAM would live, on average, 10 years. Since that time, a chemo-like medication has been approved to treat LAM and while it’s not a cure, it does slow down the progression. Additionally, most recent research reveals that while some women do succumb to LAM after just a few years, others can live as many as 20 to 25 years with the disease. Still, every year, on this day, I am reminded that I am one of the fortunate ones. I am still alive.

Mom jeans came back in style this year. I mean, seriously, who wouldn’t prefer “A” over “B”???

My grocery store is diverse. There’s a new grocery store in our neighborhood that has found the magical blend where all people from both ends of the socioeconomic spectrum feel “at home” and catered to. I often shop alongside destitute and homeless people because the store offers the cheapest bread, eggs, and staples anywhere around. The atmosphere is welcoming and quaint, not stuffy like high-end grocery stores can be. Plus, it is within walking distance from most of the poorest sections in town. But at the SAME TIME, whenever I’m there, I will also see high-ranking business folks who work just up the street. These people, who likely have 7-figure incomes, come to this store for the local flare and pricier items: the fresh homemade Italian bread, the sushi prepared on site, the signature blend coffees, and the huge selection of organic produce. I truly believe all of us feel known and accepted there. For the first time in my life, I love to get groceries. It’s a grocery-store miracle.

I live in a neighborhood where I encounter the homeless every day. That may seem like a weird thing to be thankful for – because DANG how I wish homelessness wasn’t even a thing! But Jesus did say: “The poor you will always have with you.” (Matthew 26:11), and while I’d like to argue that point with him (“But WHY, Jesus??? Why can’t we fix poverty and eliminate homelessness and hunger??? Wouldn’t that be better???), what I have come to believe is that the poor are maybe in our lives because WE need THEM. I think maybe the plan behind the homeless in our face every day is so that the comfortable ones (me) get uncomfortable. And if that IS God’s plan, I think it is a good one.

I don’t own a gun. Several weeks back, on an extremely hot and muggy evening, I left our upstairs bedroom to go sleep on the couch on the main floor. The air-conditioning just doesn’t reach the second floor in our century old home, and no one wants to see a cranky menopausal woman after a long, sweaty night without sleep. Instead, I fell fast asleep on the couch. Somewhere around 3:00 in the morning, I awoke to the sound of someone fidgeting with our door locks. We don’t live in the best neighborhood. I’d been warned that nighttime burglars in our neighborhood often look for purses set out on kitchen tables that they can just grab and go. In a milli-second I glanced at our dining table and saw my purse sitting out in the open. The burglar would have to walk right past me to get it. In the second milli-second I scanned my reach for something to use as a weapon. My choices were a book, a remote control, and an empty Diet Coke. This was not looking good. With my third milli-second I said a prayer: “Lord, see you soon!” because I was certain I was going to die. The door burst open, my heart stopped beating even before I saw the burglar. A short black shadow entered the room and I steeled myself for the bullet. The person was so short, in fact, I thought, “My God! Is this a child about to murder me?” – but my eyes wouldn’t focus in the dark. In a very NEXT milli-second I remembered my youngest daughter was short. Very short. She had moved out several months prior, but still had a key. She had fumbled at the door because it was so dark out and she was hysterical. About a half hour earlier she had learned that a dear friend of hers had been killed in a tragic car accident only an hour after he had left her apartment. She was one of the last people to see him alive. She fell apart with the news and needed support, so she drove directly to her mom. If I had had a gun, I totally would have taken it with me to sleep on the couch – that’s logical in our neighborhood. If I had had a gun, I have no doubt in my mind I would have killed my daughter.

We’ve had sunny days in November!!!

Some friends don’t give up on the chronically ill. I’ve not been a good friend to my friends, I know that full well. I don’t have the energy to go out for coffee/lunch like I once did, or hang out at the beach together, and I’m certainly not baking anyone cinnamon rolls anymore. I sometimes even look at my phone, consider a text or call, but don’t – because the phone looks like it weighs about 300 pounds. Somehow, some way, a few of my friends have stuck with me in all of this. I’ve heard it said that those who suffer from chronic illness are the loneliest people anywhere. I believe it. But God has given me the gift of a few good friends and they have made all the difference.

God made Olipop. If you’ve never heard of this heavenly healthy beverage, let it suffice to say that the Diet Coke in my fridge is afraid. Very afraid.

Some people never give up on a neighborhood. Our lovely, fragile, diverse, and economically challenged neighborhood is breaking, bursting and, as always, crying out for help. Paul and I were utterly blown away when we moved to the city by the amount of people relentlessly doing the hard, thankless, and tiring work of community care through neighborhood ministries. These brave and devoted few are bringing the shalom of Jesus to a worn-out world and we are so privileged to journey with them.

I’ve been given a baby to love. I’m so thankful that a neighborhood couple who needed a little help with childcare thought of me. It’s no secret that COVID has forced me to quit my job as an RN, has kept Paul and I from many of the things we enjoy, and has even wreaked havoc on my mental stability. I didn’t even realize how much a baby brings HOPE and JOY and LIFE into a bleak existence, but it’s true: a baby changes everything! (Even my shitty attitude)

Please, share with me some of the things you’re most thankful for this year. I’d love to hear them and God gets the glory!!!