Cindy DeBoer

Terminal Illness

Sometimes I wish all my hair would fall out… Discovering the redemptive work of suffering

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My husband recently shared some sad news with me – a 65 yr. old friend of ours has been diagnosed with lung cancer. It was evident my husband was upset by this news, and he started saying something philosophical about the uncertainty of life and the certainty of death…. Blah, blah, blah….

I’m ashamed of this, but I stopped listening to him because I was jealous.
I was jealous of my husband’s reaction, and jealous that this man is 65 (I can only hope and pray that I will live to see my 65th birthday) and yet, because he has cancer, he will derive more attention and sympathy than all the women combined who lost their lives this past year to LAM yet were only in their 30’s and 40’s. I was jealous of the reality that when people hear the word “cancer” they immediately get all melancholy and philosophical because they pretty much know what the future looks like for the sufferer: chemo, radiation, hollowed eyes, emaciation, fatigue, hair-loss, and potentially, life-loss. It’s certifiable bad news – and I don’t wish to have cancer – heck no. And I certainly don’t mean to minimize its devastation. I’m just being honest with my struggles. I struggle with the fact that because of its prevalence, cancer is known and understood and therefore its sufferers are readily acknowledged, offered compassion, extended empathy and sympathy, and given permission to grieve.

I think this is true for most people suffering from a rare disease: we long to be understood, too.

I’m grieving, too. And it sucks.

The last six months have been miserable for me. But misery is relative and I personally know of many others who have it worse so I refuse to complain and I refuse to share with most people just what’s happening. More than the fear of dying is the fear people will remember me as a whiner. Oh God, no! It’s just that for these last several months it totally sucked to have this LAM-thing going on – physically and emotionally. But because all the things happening to me happened on the insides, no one had to know about it unless I told them.

So like every good Christian feeling compelled to infuse hope to all mankind even while feeling hopeless themselves, I persistently lied and told everyone who asked, “I feel fine.”

So, in the midst of my worst suffering (so far), what I heard most often was this: “Well, you sure look great! You sure don’t look sick!”

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One day, in the midst of a childish rant, I told my husband I wished all my hair would fall out. I told him I couldn’t find a way to explain what was happening to me in one short minute and that is about all the time most people will give you. They ask you how you’re doing – but they really don’t want to hear the long truth. I said if my hair all fell out, then they’d “get it” and they’d get all melancholy and philosophical for me, too.

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The shocked/hurt look on my husband’s face told me I’d gone too far. We both know many people who have lost their lives to cancer or are currently battling it – my comments were pure disrespect. He said “Sounds like you’re just looking for sympathy.”

I said, “Maybe. Or maybe I just want to be understood.” Since my diagnosis, I had repeatedly told him that the primary emotion I experienced was loneliness. Because LAM is so rare, because to understand the disease I’ve had to spend countless hours in research, because my husband and children and family and friends can’t possibly “get it”, because I have, to date, personally met only one other woman with the disease, and because everyone’s disease progression is so unique, I feel very much alone. 

He thought long and hard, then said, “You know, everybody is dealing with something – and most of those things we cannot see. I think most people feel alone in their suffering. Maybe we all just need to treat EVERYONE with more sympathy and understanding.”

My husband is wicked smart.

Maybe you are dealing with fibromyalgia. Maybe it is COPD. Or Lupus. Maybe it is a son/daughter who won’t speak to you anymore. Maybe you don’t know how you’re going to pay next month’s bills. Maybe your husband doesn’t love you anymore.

Maybe your child has leukemia. Maybe your mother has Alzheimers. Maybe you’ve been diagnosed with a mental illness. Maybe you just lost your job. Maybe you’re not sure you can keep going anymore.

All these things – and many, many more – are things unable to be seen on the outside.

And as you walk around your neighborhood, or go to the mall, the grocery store, the dentist, the Little League game – wherever – no one knows of your suffering.

Maybe you, too, wish your hair would just fall out so people would be able to see that you’re suffering. Maybe you are feeling desperate to be known in the deepest, truest sense and to be profoundly understood. And perhaps, that is simply our depraved human condition – a whole-hearted, visceral longing to be intimately known and understood… 

Perhaps that is by design, so we fall desperate at the feet of Jesus… 

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What I am SLOWLY learning in this arduous process of grief and acceptance toward my illness is that I am most definitely NOT alone. First of all, I am not alone because of the truth we are all dealing with something. No one is immune from the pain of this world. At one of my lowest points, I stumbled upon this video called, “It Ain’t Over” by Ed Dobson, a well-known Grand Rapids pastor battling ALS. Although our stories are very different, I immediately felt I had a friend in Ed, because he gets suffering. I instantly felt less lonely.

But even better than finding fellow pilgrims on similar journeys, I am not alone because I have a Savior, who by very definition of that title has come to RESCUE us! He who suffered greater than anyone ever has or ever will – He alone understands me and my suffering perfectly. I do not need a bald head to be understood.

We are not alone, my friends. And never will be.

And so I decided that the point of this suffering must NOT be for me to extract sympathy from others – it was never about me anyway. I decided the point of suffering must be to show the world that even IN our suffering we will glorify the ONE who suffered more than any other, who gave HIS life SO THAT we might have eternal hope and eternal life; and then, we must point others toward HIM.

That, I believe, is the redemptive work of suffering.

10 Simple Steps to Freedom from Spring Cleaning. Finally.

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SAMSUNG CAMERA PICTURESWhen I found out I had a disease that would likely reduce my years on this planet significantly, I wasted no time and jumped into conservation mode by eliminating things from my life that are not important, not necessary, or just no fun. I’m trying to focus my time and energy on things that really matter.

So, with the words of our bronchitis-encumbered friend, I’ve kicked spring-cleaning to the curb, because “Ain’t nobody got time for that!”

I have never understood why spring-cleaning is a thing anyway. What kind of fun-Nazi came up with this concept? Just when the temperature and the birds and little kids are all beckoning us out doors, we are guilted into cleaning our homes from top to bottom like some freakin’ locked-up Cinderella.

Not this Cinderella. No more.

So if you want to put an end to the guilt-trip called “Spring-Cleaning” – you can use my secret non-cleaning methods, which will certainly NOT earn you a headlining piece in Better Homes and Gardens, but WILL most definitely help you reclaim one of life’s most precious commodities: time.

The key to freedom from Spring-Cleaning is prioritization and simply determining how often certain chores are TRULY necessary. Here is my list of spring cleaning chores and the frequency I give them:

  1. Dust baseboards: Never. Why bother with this total time-sucker? Who cares about dust ALL THE WAY down there by your already stinky and dusty FEET????
  1. Washing windows: Every other year. Maybe. However, if the Sparty’s are doing well in March Madness AND your daughter plays spring soccer AND you’re planning a spring missions trip to Guatemala, you can stretch this out to three. Maybe four.
  1. Wash sheets: Whenever you darn well feel like it, and never a day sooner. Who are these people that wash their sheets weekly? These people who make us feel less than just because we’d rather have a root canal than wash bed sheets? Who are these masochistic individuals who are willing to endure the stubbed toes, the broken fingernails, the SWEAT that breaks out when replacing the previously ill-fitted and now significantly shrunken fitted sheet??? They are not my friends, I’ll tell you that much.
  1. Wipe down interior of cupboards and clean food and crumbs out of silverware drawer: Whenever the dishes and silverware coming OUT of the cupboards are as sticky as those going IN to the dishwasher.
  1. Clean out the refrigerator: When something spills and makes a sticky mess. (I was just a young bride when I noticed on my mother-in-law’s calendar the little word “refrigerator” inked in the last Wednesday of every month. I asked her what that meant and she said, “That’s refrigerator cleaning day. I take everything out and clean the inside thoroughly, and then pull it out from the wall and clean behind it, too.” I choked. She had been thinking so highly of me up until this point. I could sense her disappointment. We had been married at least TWO years by that time, and I had never once had a “refrigerator day.” Could this be a thing? Cleaning behind your refrigerator??? Why has nobody shared this information with me before? In a rare, raw act of defiance, I decided then and there that on this one issue I would seriously disappoint my sweet mother-in-law and choose “NO!” I will NOT have a monthly “refrigerator day!”)

So, just to be clear, when I say “clean out the refrigerator”, I’m simply referring to dumping moldy-oldies and just scanning the interior to make sure no living creature will crawl out at you when you reach inside. I am NOT talking about cleaning under or behind the beast. For me, that is done approximately: NEVER. So far, 29 years of being an independent refrigerator owner and NOT ONCE have I cleaned behind one!

  1. Organize closets: When you can’t shut them.
  1. Wash walls: Do you eat off your walls? Do you lick your walls? Do you prepare your meals on your walls? Do you unthaw your frozen meat on your walls? Do you fold your clean laundry on your walls? Do you change your baby’s diaper on the wall? I rest my case. There is absolutely no reason whatsoever to wash walls. Every 10 – 15 years you will repaint them anyway. Good enough.
  1. Vacuum under the bed: Unless you have a dog who sometimes eats food she shouldn’t which makes her a little psychotic to the point of thinking that the under-bed space is actually a doggy doo-doo zone and leaves you a mess that ferments for several days before you discover it, there really is no reason to vacuum under the beds. I claim “outta sight, outta mind” for this one.
  1. Professionally clean carpets: Do NOT waste your time OR your money on this scam! (I’m pretty sure the government owns both the carpet cleaning industry and the dry cleaning industry. They are both fake covers to extract more money from the unsuspecting American public by pretending to do something that is purely bogus! Surely by now, in our advanced human evolution, we ALL realize that dry cleaners simply step out back, shake out the garments, and then throw them in a funky-smelling plastic bag proclaiming, “Voila! Clean!” Likewise, I guarantee you that one hot minute after the carpet cleaner’s truck pulls out of your driveway, the Kirby vacuum cleaner saleswoman could bust into your house and suck up mounds and mounds of disgusting dirt, lint, and dog hair from your “clean” carpets and furniture making you feel that somehow you don’t love your family well for being so dirty and that what you really want to do is spend ten times too much on a vacuum cleaner. Let me save you the HEADACHE: do NOT bother with EITHER ploy to get you to pay for something unnecessary! I promise you, that little Eureka Wind-Tunnel that your grandma bought you for $59 at Walgreens and proudly gifted to you at your bridal shower a mere 28 years ago… she still works juuuuuuuust fine! Fine, I’m sure of it! Have faith!)

Carpet cleanliness in America is so overrated. Go ride your bike with your kid in this glorious spring weather – something terribly underrated.

  1. And last but not least: Dog Care. I just read an article on spring-cleaning for your pets – a serious exposition on why my dog Buddy needs extra special attention at this time of year, too. Well, let me save you those wasted hours as well, my friends. My special secret that only takes a few seconds and keeps Buddy smelling April-fresh year-round: spray her frequently with spring-scented Febreeze! While the manufacturer and PETA probably do not endorse this practice, it could very well be the best spring-cleaning tip I can give you!

(I initially learned of the spring-cleaning concept from the Dutch Master herself, my Grandma Visser, who single-handedly raised the bar on the phrase “Dutch clean.” I’m noticing a bit of a cold sweat here as I contemplate posting this possibly too-honest list…. She was also a very large, very candid woman who made me cry on more than one occasion simply by speaking her mind. I believe I’m hearing her voice posthumously in my head right now – “Girl! Have you no shame???” Well, probably not, Grandma. Probably not.)

If I Had Only Nine More Years Left to Live

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UnknownIt has been a year since I was diagnosed with Lymphangioleiomyomatosis (LAM) a helluva stupid lung disease that is slowly consuming my lung tissue and sucking the life from me. There is no cure. It has been a hard year – and my disease has progressed even though I specifically, repeatedly, desperately asked God to not let that happen – and I feel constantly compelled to reexamine my life and it’s meaning. Last year, on Christmas Eve, I wrote a blog entitled “If I Only had 10 More Years to Live” – and how having a potentially terminal illness changed my life’s goals almost immediately. Living with this diagnosis for a year and letting that reality sink in has taught me even more – and I felt compelled to update that “bucket list”.
It’s like my own constitutional amendments…

1)  Contrary to what I wrote a year ago, I will NOT be keeping Snickers in my car 100% of the time to have on hand for panhandlers.
I piloted this program for several months and after single-handedly eating SIX bags of snack-size Snickers, gaining FOUR pounds, and only passing out ONE candy bar – I’ve decided I MUST come up with another plan or I won’t die of LAM, but Snickers toxicity! Because poverty and homelessness literally keep me awake at night, I’ve got to DO something. Ignoring the issue is not an option for me. I’ve decided I’m going to have Degage vouchers with me at all times to give out to panhandlers. They are coupons from our local inner-city mission that can be redeemed for a meal, bus fare, haircut, or hats and gloves. Even BETTER than a Snickers. Check out your own city mission and see what they offer – because every city has some (that is, homeless people AND helpful solutions).

2)  I will watch less volleyball.
I adore my daughter and want to fully support every endeavor that is important to her (and all five of my kids). However, the amount of time that sports are sucking from the life of our generation is sickening and I don’t want to be a part of that madness anymore.

Our culture has dictated societal “norms” for sports involvement that simply require more from our family that we’re willing to give. There is a great quote by Krishnamurti that made me realize I was succumbing to a dangerous trend: “It is no measure of health to be well-adjusted in a profoundly sick society.”

This lifestyle of dinner-in-the-car, homework-on-the-sidelines, texting-conversations, weekends-at-the-tournament, no-time-for-church, and washing-the-uniform-at-midnight, CANNOT be the best distribution of time that God had in mind when He planned for Christians to be His hands and feet! When we attend every stinkin’ thing our children participate in – in this world that has run amok with children’s athletics and child-focused activities – we are actually giving our children TOO much attention and thus making them our false god. Our children need our love and support, not our worship. Maybe if we took our children off the throne, we’d have more time for all the things Jesus told us to be about: the poor, the oppressed, the hungry, the hurting, the marginalized, each other.

If I really do only have 9 years left to live, I want to have time for friends with cancer, widowed neighbors, young moms with screaming toddlers, teens from the inner-city, the stranger in the backed-up check-out line who looks like he’s ready to cry, AND my kids! I love my kids profoundly – and by saying I want to give them a little less side-line attention does not mean I love them any less. I just want to try to make the remaining distribution of my limited time a reflection of a heart that breaks for the things that breaks God’s heart. My WHOLE world is not my children.

3)  Maybe if I watch less volleyball, I’ll have more time for the things that I didn’t get around to (but really MEANT to!) from last year’s bucket list: ICE CREAM dinners at the trailer park and time with nursing home residents who don’t get any visitors. Or maybe I’ll combine the two and load up my car with kids from the trailer park and together bring 20 gallons of ice cream to the nursing home! To me, that sounds like a taste of heaven.

4)  And this whole Ferguson mess taught me something: I need to make some black friends.
One of the richest experiences of our lives has been living in Morocco and making true, deep, lasting friendships with Muslims. When Islam has a name, a face, an address, a friendship, it changes your perspective on all things “Islamic”. I love these people in Morocco. And they love me. And so I’m extremely cautious before deriving any kind of conclusion about what is really happening is the Muslim world.
During the Ferguson debacle, I realized I don’t understand racism in America hardly at all. While in America, I have largely lived in an all-white, middle-class, Christian bubble. I didn’t mean to do that – it just kind of happened. I certainly don’t know enough black people deeply enough to say I can understand their life or our differences. That fact made me so sad. I tried to keep my mouth shut through all of the debates going on over that mess in Ferguson. Maybe I’ll weigh in when I have a bunch of black friends and feel I understand their hearts better. I’m not talking about exploiting some fake friendships. I really do want some black friends – and I just want to acknowledge that right now I’m ignorant. And ignorant people should keep quiet.

5)  This past year has taught me I need to spend LESS time with my mother-in-law…
This is one of the hardest for me because I was wrongly believing that I was the only one who could help her and meet her needs. But what I’ve been failing to do was accept dementia. Dark. Unfair. Cruel. Relentless. And I can’t fix it or make it go away and going to visit her every day was only leaving both of us exhausted. I have to let it go and accept that we are losing her slowly to this ugly disease. I can give her only what I can give her – no more, but never any less either. This has helped me in other areas of my life, too. I’ve learned I’m a fixer and I hate it when I can’t solve problems or make them go away. But accepting that OUR SAVIOR came, specifically, to carry all our burdens, means that all we have to do is show up. We don’t have to fix them or carry them or worry about them, we just need to be fully present in the midst of them. He really DID come to set us FREE!

6)  A year later, and I’m STILL not gonna watch any Reality TV (Sorry all you DWTS fans – but I just don’t get it) Apparently, however, we as a family are going to occasionally curl up in blankets and absorb five seasons of Parenthood and try to solve issues like autism, teen sex, affairs and cancer with the family Braverman.

7)  And on the no dusting and vacuuming vow I made last year… WELLLLLLLL, the truth is really two-fold. One, I’ve learned that a house full of dust and pollen and dog hair is REALLY bad for my failing lungs and I really do want to make those two suckers last as long as possible. And two, when I can write words in the dust on my coffee table, it distracts me so much I can’t even think. So, truth be known, I’ve started dusting again. But not washing windows. And don’t even ASK me what my closets and drawers and laundry room look like. Housework? Paring it down to the necessities – and it feels so right.

In fact, THAT’S IT! – That’s what you do when you feel you’ve been given your expiration date…. You pare it all down to the necessities – discovering what it is that you truly need and what truly makes you feel most alive!!! Thank-you, Jesus, for coming to earth a baby, living to know all pain and suffering, dying to conquer death, and being ALL that I would truly ever need.

“For lo, I bring you good news of great joy that shall be for all people. For unto you is born this day, in the city of David, a Savior, who is Christ the Lord.” Luke 2: 10, 11

On Mice and Ice

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This week, two dastardly events descended on our family.  First, our daughter spotted a MOUSE in my CAR – and it seems to have taken refuge under the passenger seat and we can’t get it out.  Now, every time I drive somewhere I’m terrified that vermin will jump out at me.  Secondly, a BLIZZARD hit Michigan… in NOVEMBER!  We’re supposed to be hosing off the patio furniture, cleaning out the gutters and planting mums in the landscaping in November – not having snow days, clearing off icicles and endlessly shoveling the driveway!
Our daughter Grace turned 16 this year and has now been driving for five months.  This snow-fall will be her first exposure to driving in the snow and ice – and she’s a little freaked by that.  So on the first evening of serious snow accumulation, while I was driving her to volleyball, she asked me a great series of questions on how to navigate icy, snowy roads.
It wasn’t until I got about half-way through the questioning that I realized what a precious, precious gift we have – those of us living in this frozen tundra – because much of what we need to know about navigating life we can learn from navigating ice!
Winter driving is simply a “test-run” to teach us how to get through the tough stuff in life! 
So I wrote a little summary on driving tips for my sweet daughter Grace to help her stay safe on nasty Michigan winter roads – and included the life applications to help her avoid “crashes” in life as well:

o   Go slow. Always drive SLOWER than what you think you need to.
Life is speeding by – that is true.  But if you insist on speeding with it, you will miss the VERY things that make life holy and precious – the essence of what it means to be alive.  Take it slow.  Breathe in the crispness of this winter air, hear the crunch of the snow beneath your boots, catch snowflakes in your mouth, bury your friends in snow drifts in our yard, savor the beauty of a world blanketed in white.  THIS is our Father’s world – and we get the gift of enjoying it.
o   When you feel you’re losing control on the ice and you start to slide (and you WILL slide someday, baby)- don’t slam on the brakes!  Just tap them lightly, slow down, and hold steady.
Likewise, if you find yourself going off course in life, don’t come to a halt!   Forward motion is necessary to take you OUT of the problem. You will make mistakes.  You will, at times, lose your way – but keep going forward and hold steady to that which you know is true.  Don’t ever find yourself on the side-lines just watching life go by, Grace.  Get in the game and keep moving…
o   Always have your cell phone with you.  If you do get into trouble, all you have to do is call for help.
Oh, Grace, when it comes to life, this is such a hard one for me!  Just remember, we were NOT meant to do this life alone!  Reach out to others when you get into trouble – and together, you can make it.
o   Keep your eyes on your mirrors and know what others’ are doing all around you.  If they are starting to slip and slide, get out of their way – don’t get caught in their wreckage!  But if you see someone go in the ditch, by all means, stop and offer help!  
Likewise in life, Grace, there will be those who are crashing and burning all around you – all the time.  Learn from them.  Help them.  But keep your distance from those who try to bring you into their wreckage.  Instead, love them unconditionally and offer help whenever you can.  Always, always, always, help those in need.
o   You see that well-worn track in the road?  Well, don’t take it.  It’s deceptive – because it’s actually very icy there.  Keep your wheels just off center of that track because you’ll get better traction where there’s a little snow and not just ice.  
And likewise in life, do NOT take the trail most traveled!  It, too, is slick and deceptive – alluring, but totally dangerous.  It’s that whole “wide gate”, “narrow gate” thing…  the path that “everybody else” is taking is the going to be the one that leads to destruction.  Take the road less traveled, Grace, and it will make all the difference.
o   Keep both hands on the wheel at all times.  Because when that damn mouse appears, and oh, you better believe that he’ll appear – you gotta be ready!  You DO NOT want to lose control when the mouse appears! 
None of us, not one, are exempt from troubles in this life.  They will come – for sure, they will come.  So having both hands on the wheel – which represents HE who directs our paths – will keep you ready for when those “mice” jump into your life so that you don’t lose control and crash.  When life gets hard – like when you have to change schools, or your friends hurt you, or you don’t get to play the sport you love, or your mom gets a terminal illness – you MUST have both hands on the wheel, Grace.  Hang on to Jesus with all that you have.
You can do this, Grace!  Remember – there will ALWAYS be ice and mice – but YOU have what it takes to drive right through the storms:  a Perfect Co-Pilot.

A Thank-you to Cancer and Other Ugly Nasty Diseases

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My dad was 71 when he was diagnosed with advanced-stage colon cancer.  Because he can be a rather grumpy old man who’s anger and temper are legendary in these parts (he was once evicted from his own high-school basketball game after getting so upset about a referee call that he slammed the ball into the floor with such force it bounced up and hit the ceiling)  my three sister’s and I were all a bit wary about how this journey would play out.  We knew he’d be a miserable patient.  We decided to take turns bringing him in for chemo and radiation in an attempt to spread out his hostilities.

This was my first real “go around” with someone battling cancer.  Sure, I had come alongside several others with cancer and helped with meals, rides, visits, etc.  But that’s different.  That’s just peaking in on their lives when it’s convenient for me and feigning understanding.  Because, truthfully, I didn’t have a clue what they were going through.  With dad, things got real.  It was a real, shared walk through the valley of the shadow of cancer. 
 Chemo and radiation appointments involve lots of waiting – so we spent countless hours in the terrarium-like café that anchors the cancer center in Grand Rapids.  Over orange-cranberry muffins and dark-black-coffee-no-sugar, Dad and I would talk about growing-up memories, golf-cart repair issues, sports, and all the “bull-shit lawmakers who have their heads up their asses.”
One day, in that lovely cafe with the smell of cancer thick in the air, I saw something new – a fresh perspective.  I saw a well-dressed business man in a tailored black suit – with expertly coiffed hair and his briefcase tucked upright by his feet – sitting opposite his bald mother, hand-in-hand.  She was attached to her chemo pump and she seemed to be soaking in every word of her attentive son.  I saw a young mom, with her three little children dodging in and out of her legs and the legs of the table, sharing hysterical laughter with her dying sister – a woman of 42 who was losing her battle to breast cancer.   I saw two middle aged women – one the sick and suffering and the other the best friend – leaning in as they talked, holding hands, sharing lives and sharing tears.
I was witnessing the holy gift of presence.
Wherever you are (at least in America) and whomever you meet, if you ask them, “How are you?” almost invariably the first word out of their mouths will be “busy.”  Or they may respond with busy’s sister, “tired.”  It’s pandemic – those are our culture’s predominant adjectives.  As I looked around at the many people in the café that day, I thought: These people are busy, too.  I’m sure they are just as busy as everyone else “out there”.  But then I realized, it is because of this thing called CANCER that they have all chosen to get off the crazy-cycle of life and spend today – this day – in the terrarium café of the cancer center, and be fully present for the person in their life who is battling this wicked disease.
They get it, I thought.  They get it that nothing else matters as much as the people in our lives.
For whatever else these busy people had going on in their lives – on THIS day they decided that people matter most.  Relationships matter most.  And they chose to say ‘’TODAY, I will honor my loved one with the gift of PRESENCE.”
When someone gives you something that you really needed, that you crave and long for, and fills a gaping hole in your life, I would say that is a gift.  Even if you didn’t know you needed it – it is still a gift.  Might cancer be a gift?  Is that what God was thinking???  Please understand –  I DO NOT think cancer is beautiful.  I think it is ugly and is a result of the Fall and I think God weeps when someone gets cancer.  But I do know this – what I saw in that café every time we went in for a chemo or radiation treatment was a beautiful side of humanity that we rarely get a glimpse of anymore:  people slowing their lives down enough to really REACH INTO the lives of another and bring hope, comfort, presence and peace.  It’s like they bring some heaven to earth. 
Cancer gives us the gift of presence.
Until my dad got cancer, I really didn’t want to hang around him much.  He can sometimes be down-right mean – and he yells at me when I’m driving.  He sometimes makes me feel six-years-old and I’ve just spilled the red Kool-aid on the shag carpet.  And he thinks anyone who isn’t a conservative Republican in the Reformed Church of America is an idiot (which causes trouble for me…).  But cancer changed all of that – I suddenly didn’t care about his mean tendencies, yelling in the car, and political views.  I just wanted to spend time with my dad because I realized our days on this planet are numbered and I wasn’t going to have him around forever.  This life is not our own, and we can no more control the beginning and the ending of it than we can control the rising and setting of the sun.  I started missing dad even before he was gone – and suddenly, more than anything, I wanted to spend long hours over orange-cranberry muffins in the cancer center’s café listening to his rants about Obama and his asshole neighbors at the trailer park.
I have learned over the years that my dad really does love me, but has a hard time expressing it.  I love my dad, too.  And I haven’t told him that enough.  Cancer gave me a chance to do it.
Sometimes it takes something as ugly as cancer to bring that out in people.
And now I am beginning the journey of my own walk through the valley of the shadow.  It may be years before I feel any of the effects of Lymphangeioleiomyomatosis (LAM), but I’ve seen the CT scan of my lungs and it is scary.  I’ve lost countless nights of sleep tossing and turning as I picture those cysts on my lungs hijacking the space meant for air exchange.  And because there is nothing that I, nor the medical professionals, can
do at this point to treat my LAM,  I decided the one thing I could do was jump up and down and scream to the world that LAM exists and that it’s evil and ugly and should be eradicated!  I joined forces with my sisters and a few friends and organized a local 5K Walk/Run to raise LAM awareness and hopefully raise some money to help find a cure.  We decided to set rational expectations, and prayed for maybe 40 or 50 participants and set our financial goal at $2,000.
In mid-August, as the Lord blessed us with the best West-Michigan weather ever, around 275 people participated in our “little” 5K and we raised over $13,000 to help fund the search for a cure!  It was nothing short of miraculous and it took my breath away (no pun intended).  I looked around at that sea of people that glorious Saturday morning and realized, again, I was witnessing a beautiful side of humanity.  The side where all these incredibly busy people slowed their lives down enough – their one wild and precious life – to take part in an event that extended to me and every other woman with LAM  the gift of hope, comfort, presence and peace.  It was such an amazing celebration of life.  Even though LAM is ugly, the celebration that day was beautiful.  Truly beautiful.
I hate it that my lungs are slowly giving out on me – but I am beyond grateful and remain totally in awe that I got that little glimpse of heaven come to earth that day through the outpouring of love from all those people running a 5K.  Maybe failing lungs is just one of the many tools God uses to get humanity to counter the overbearing “stay-busy-and-tired” message of our culture and instead to slow down and give the gift of presence!
I’m telling you what, even when things seem bad – even ugly-disease bad – God is still good.
 

[Read more…] about A Thank-you to Cancer and Other Ugly Nasty Diseases

A Roaring LAM(b)

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Last year, on the day before Thanksgiving, I found out I have a terrible, rare, progressive and often fatal lung disease.  Nobody – not one of the experts, not one of the scientists, not one of the doctors – can tell me how many years I may have left to live.  But I get that – who but God really knows anyway?  However, the one thing they ALL seem to agree on:  I have a lot fewer years left than I did just two days before Thanksgiving – when I didn’t know I had Lymphangeileomyomatosis. 
It’s called LAM for short, because, let’s be real – no one is going to remember Lymphangeileomyomatosis.  LAM.  Seriously, God?  That’s my new moniker?  A LAM(b)?  Of all the animals on the planet that might be fun to be named after – I get to be called a lam(b)?  A lamb is a pokey, wobbly, helpless baby sheep.  As if being called a BABY of any animal isn’t enough, I get to be a baby animal from the sheep family – who are most widely known for their dim wit!  Ask anyone what they think of sheep and they’ll reply “stupid”.   Because of their confused and moronic tendencies, sheep have even been known to follow each other right off the edge of a cliff. 
At the most frail and freakish time of my life, I get to be a lam(b).  Not even a full-grown sheep who has learned a bit about sheepdom, but a shallow, immature, dependent little baby sheep.  How poetic.   And then the real irony is this:  I actually feellike a little baby sheep, too.  I feel dim-witted, confused, sheared, exposed – and most of the time I want to run – to flee, sometimes right off the edge of a cliff.
But then I read up a bit on sheep and sheep-things – and I found all kinds of reasons that make me proud to be one of them.  Here they are:
  1.  Sheep are known to follow their leader – the CLEAR leader.  Even blindly, without any understanding of where they are being led and why, sheep will follow their leader.  Likewise, the most important goal in my life is to follow my leader, Jesus, wherever and into whatever He leads me.  I want to have as much faith as my sheep-friends, so that I will follow Jesus blindly, even when I don’t understand where He is leading me.
  2. Sheep have such incredibly strong peripheral vision, they can actually see behind themselves without turning their heads.  If I am living my life as fully engaged as possible, I need to be able to learn from all that is behind me.  I don’t want to live in the past, which would only weigh me down, but I just need to be able to seethe past to know how to navigate the future and prevent recurring mistakes.  The ability to see behind ourselves – for both me and my sheep friends – could actually spare us all kinds of pain.
  3.  Sheep become stressed when isolated.  When I first got my diagnosis, I began wallowing in self-pity and since I knew not a single soul with the same disease, I could not commiserate my misery with anyone.  The more I isolated, the more stress and anxiety I experienced.  Apparently, sheep have learned that which I still struggle with – we were not meant to do this life alone.  We need community.  We were created for community.  Community is good.  And once I reached out to family and friends – my people/my flock – I felt the stress just wash away.
  4. Domestic sheep have a life expectancy of 10 – 12 years, but some live as long as 20.  When I first got my LAM diagnosis, I raced to the internet and Googled it.  Of course I did – it’s always our first move in the 21st century.  I was devastated to discover that most literature cited LAM as having a 10 year prognosis.  As I’ve investigated further, many people are currently suggesting the internet data is outdated, and that with earlier detection and possible lung transplant, LAM patients are now very capable of living 20 years or more – just like my sheep buddies. I don’t know how long I’ve already suffered from LAM, it could be I’ve had it for many years already.  But because I’m definitely a domestic sheep and not a wild one, I am praying and choosing to believe I could live for at least 20 more years.
  5. Sheep have been used, both in ancient times and in modern religious rituals, as sacrificial animals.  Is there any possible way that God Almighty allowed me to get this disease in order to call attention to it, raise awareness, potentially leading someone to find a cure, so that ultimately other young women might live?  Or bigger yet, is there any possible way that God Almighty allowed me to get this disease, asking me to glorify Him even in the midst of suffering, so that others might be drawn to HIM?  Oh my, even the thought of that takes my breath away.
So today, today I am embracing my inner sheep.  I am a LAM(b) who is choosing to accept that I am quite dim, that I definitely NEED my leader and I definitely NEED my community, and that I have been called into this suffering and that’s not a terrible place to be.  Because of those choices, I refuse to be a quiet little LAM(b).  I refuse to surrender to hopelessness and despair.  I refuse to accept “no cure”.  I am choosing to stand up and shout.  I choose to be a ROARING LAM(b)!!!
As you get older you care less and less what other people think about you – so you say whatever you want.  When you’re dying it gets even worse. My kids are constantly cringing around me because they never know what I’m going to blurt out next.  So here I go:  I am unashamedly going to shout from the rooftops that LAM is snatching young women’s lives and it DOES NOT have to be this way!   LAM is under-researched, under-funded and under-known.  I believe there is a cure and we only need to find it!  And so this roaring lam(b) – with a ton of help from my flock – is doing one BIG thing this summer to create awareness:
The 1stAnnual LAM Awareness 5k
Walk/Run in Hudsonville
August 9that the Hudsonville Baldwin Street Middle School Baseball/Softball complex
7:30 a.m. Registration begins
9:15 a.m. Walk/Run begins
$32.50 registration fee (Because the average age of onset of LAM in women is 32.5 years old); 5K t-shirt, snacks, prizes, and FUN included.
Won’t you please come join me, my family, friends, and community, and help to create awareness for a little-known, but devastating disease?  All proceeds will go to the LAM Foundation – http://www.thelamfoundation.org/– a 501c3 and the sole organization working to raise funds to further awareness and find a cure for LAM.
For questions, please call Kris Zylstra at: 616-648-6323 or e-mail at:  zbowfamily@yahoo.com