Cindy DeBoer

CANCER

Leaky Breasts and Other Hot Messes

by 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

Six Critical Life Lessons Learned from a Hacker

by 5 Comments

I was furiously typing away – hoping to complete another chapter of my book in the two hours I’d managed to wrangle free. Suddenly, a warning popped up on my screen, “CAUTION! You have a virus attacking your computer! Stop immediately and call Apple: 555-5555” (the title of this blog should let you know why I’m not sharing the actual number…)

I’ve heard of these scams. I wasn’t born yesterday or over fifty years ago (okay – a tiny white lie with that one…). But I did know enough to be skeptical. I tried to exit out of the pop-up. No luck – it wouldn’t close. I tried to close all my windows and the Apple wheel of death appeared refusing to budge. So I decided to just shut my computer down (my go-to solution for techy issues). But the computer had totally froze and when I hit the off key it started screaming at me – an unearthly, loud and high-pitched alarm. I frantically tried to stop it by pushing every key on the keypad. Nothing. Totally frozen keyboard and a shrieking computer that hurt my ears.

It felt like satan himself was communicating to me from my computer. (Hmmm…. Now there’s a thought!)

I asked my daughter to quickly access her own device and ask Google if this was a legitimate warning and if I should call the “Rescue” number flashing across my screen. Google isn’t so smart after all: the first thing to appear in her search was an affirmative – Yes, indeed, sometimes Apple will alert you to viruses that are attacking in real time.
So I hurriedly called the number and talked to Rashid. (I know, I know. I know what you’re thinking… the fact that Rashid could barely speak English should have, possibly, been my first clue….) But at first, Rashid was super sweet and helpful. He calmly walked me through the steps necessary to stop the screaming alarm. Then he explained a few more steps that would allow him to interface with my computer, which, he said, was necessary to diagnose the problem. I watched, helplessly, as he navigated the cursor on my screen and moved quickly in and out of windows and in and out of my settings. Then he confirmed my computer had, indeed, been attacked by a wicked virus. The very worst, he said. He pulled up graphs on my screen depicting the damage and just how much of my data had been infiltrated. He said to remove all the infectious material would take about 24 hours and all I had to do was pay $79 and he would fix the whole darn thing.

What a doll, that Rachid.

I may look old and stupid, but I tell you what, once in a while, when the thing is wretchedly stinky, I’m able to smell a rat.

I hung up on Rachid as fast as you can say “India” and slammed my computer shut. I set it in the corner like a bad child and didn’t open it again for 24 hours. The truly honest and genius boy-child at my local computer store fixed everything the next morning in mere minutes. He felt pity for such an old, helpless lady like me to be taken so badly by a hacker that he didn’t even charge me for his services.

Once I calmed down from the debacle, I realized I was actually thankful for everything I learned from Rachid:

1.  We are not in control of squat. As I watched Rachid guiding my cursor all over the screen and clicking away to “convince” me of my desperate need of his services, I felt incredibly helpless. I didn’t know if I should trust him or not – all I knew is this: “I have no control anymore.” It reminded me of how often that is true in life. We want to believe we can control things – but when our child rebels and runs away from home, or our best friend betrays our trust, or we lose our job, or we get the “cancer” call, or we lay our parents down for their eternal rest, or we find out we have a stupid lung disease that’s robbing us of steady breathing and a long life – well, all those moments serve to remind us that we don’t control SQUAT. We are wasting our time and energy trying to control that which we were never meant to have reign over.

2.  Satan is real. A while ago a well-meaning friend told me I look for satan under every bush. She was suggesting that perhaps I give the enemy of our souls more credence than I should. I don’t know, maybe I do. Sometimes I think I just watched too many horror movies in junior high…

But what I know for sure is this: That old Liar roams to and fro looking for ways to steal our joy and wreck our faith in Christ – but the sooner we recognize his schemes the sooner we can put a stop to it! Don’t be afraid to ascribe evil to he who authors it!

3.  We never make good decisions when in the midst of a crisis. When we find ourselves in a crisis, we need to, if possible, BACK AWAY! Give the thing time to simmer down. We need to give ourselves some space to slow our breathing, gain composure, pray, and THEN process the crisis thoughtfully. Only then can we gingerly step forward into finding a solution.

4.  Real, authentic, caring help truly does exist in this world. Go seek it.

5.  Never think too highly of yourself. I was devastated thinking that while Rachid had access to my computer for those 24 hours he was probably reading and stealing all of my information on my computer. My wise, gentle hubby had to (carefully) remind me that I’m not THAT special. We don’t work for the government, we’re not made of millions, and we’re not famous – so what could a hacker really “steal” from my computer that would matter? A blog on how we renovated a crack house??? The little circular I wrote on how to deal with menopause??? The poem I wrote for my dying dad??? Did I really think some hacker from India would steal my Christian memoir book and somehow get publishers to do what I have been unable to do and publish my book under his pseudonym??? Rachid becomes Rachelle and suddenly he is the next Anne Lamott???

 I had to admit, Paul had a point…

6.  If you have nothing to hide, it doesn’t matter who looks at your stuff. Without a single incriminating photo, without essays bashing high-profile people, without massive wealth, and without anything to share except the gospel of Jesus Christ, I should have had NO FEAR of someone stealing my content. In fact, I should have HOPED they would!

My prayer for us today is to not fear the hacker – or anything or anyone set on destroying us. May we be a people unafraid or unashamed of someone looking at our computer content or our browsing history. May we recognize those who are bent on causing pain, hurt and chaos in our lives and STEP AWAY from them whenever possible. And may we not think so much of ourselves or our work that our computer carries more importance than it should.

And may we never forget that when a TRUE crisis arises (and they will, brothers and sisters, they ALWAYS do….) help is only a shout away:
“Hear my cry, O God, listen to my prayer; from the end of the earth I call to you when my heart is faint. Lead me to the rock that is higher than I, for you have been my refuge, a strong tower against the enemy.” Psalm 61:1-8
 

Is it possible that snow in April, stupid lung diseases, and other atrocities could be good for us?

by 5 Comments

We lived in the most glorious, sunny, mountainous and palm-treed locations both times that we lived abroad. Aix-en-Provence, France and Casablanca, Morocco are two dreamy places to have once been called “home”.

While living abroad, we met people from all over the states, as well as from around the world. Then we all moved on and returned to our “homeland” which means we now have friends scattered around the globe.

Visiting some of our friends in Southern California for the first time changed everything for me and my “Best Places In the World to Live” list. To be honest, my first thought when I encountered the beauty of southern California was not that I wished to live there, but one of feeling sorry for my Californian friends.

Let me explain:
To me, the south of France and Morocco were these magical, breathtakingly beautiful holy sites where God revealed Himself to me. I cried the first time I saw the French Alps, the Mediterranean Sea, the palm-tree lined streets of Casablanca, and the Sahara Desert (to be fair, I do cry a lot…) Every time I encountered new beauty my Michigan-eyes had never known, I was left speechless, breathless, and entered a holy state of worship for a God who could (and would) create such beauty. My Michigan-eyes had beheld a LOT of glorious things in our mitten state, but just nothing like mountains, ocean, desert, palm trees, oh – and that elusive SUNSHINE!!! (Today, on April 11, it snowed in Grand Rapids, Michigan. Need I say more???)

So when on my inaugural trip to California I discovered identical beauty – mountains, ocean, desert, palm trees, sunshine (which can all be seen AT THE SAME TIME, for heavens sake!) – I realized that there was NO WAY my Californian friends could have felt the same depth, love, and appreciation that I did while we all lived in France and Morocco. There is no way that they woke up every day and said, “Lord have mercy! Another sunny day!” (as I did). There is no way they took endless pictures of palm trees (as I did). There is no way they walked the beaches every day and said, “God in heaven, help me to carry this moment with me forever – even into the polar vortex that is bound to hit in the middle of my future Michigan winters” (as I did).

I was CAPTIVATED by the weather and the landscape of those two countries – but only because I come from a backdrop of cold, snowy, and relatively flat Michigan. My California friends who also lived in France and Morocco with us must have greeted each new day with “Just another day in paradise.”

And that difference in our two experiences is such a CRUCIAL thing for us to remember when life gets hard, ugly, disappointing or blizzard-y.

A light shines brighter against a backdrop of darkness.
Comfort is only as comfortable to the degree of discomfort it relieves.
Joy is only as joyful as the sorrow from which it rescues.
Pain relief is only helpful to the degree of suffering it relieves.
God is only as good as to the depth of which we recognize our sin and need of a Savior.

**********

When we meet people who (seem) to come from a very “charmed” life – who basically seem to escape all suffering in this life (they are smart, rich, thin, never struggled with teenage acne, their kids all make good choices, no cancer, disease, or disorders, no bad hair days, and their dog never poops on the living room rug… Kind of like the sun is always shining in their lives. You know the type…) well, it is tempting for us to wish we were them. It seems like THAT would be the life we all want and should strive (pray) for.

But I wonder…. I wonder if we’d be missing out on some very important things God wants to show us if our lives were void of the pain, the messy, the heartache (the snow?) I wonder if there are actually parts of GOD we would not know if we never knew pain, suffering, hurt and loss.

Why are we given so many different names for God if we’d never need them? If we all pursued and achieved the “charmed” life without any pain and suffering, certainly there are attributes of God we would never know.
 
How can we know God as our DELIVERER if we’re never in a horrible place from which we need delivering?
How can we know God as our COMFORTER if we’ve never been uncomfortable?
How can we know God as our HEALER and GREAT PHYSICIAN if we’ve never known illness or disease or suffered emotional/spiritual brokenness?
How can we know God as our PROVIDER if we’ve never ached for provision?
How can we know our God, the PRINCE OF PEACE if we’ve spent our whole lives avoiding conflict, running from adversity, never challenged?
How can we know our God, the SANCTUARY, if we’ve never been in a place of needing protection?
How can we know God as a REFUGE FROM THE STORM if our lives are always “sunny”?
How can we know God as the BREATH OF LIFE if we never recognize our desperate need for Him in ALL things?
How can we know God as our SHEPHERD if we never see ourselves as lowly sheep?
 
I’m not in any way suggesting we shouldn’t live in California! Nor am I saying God gives suffering – I believe HE IS PERFECT and would never author pain, loss, and suffering. But I do believe, with all my heart, that through the suffering we discover a God we hadn’t previously known – and we come to experience Him and love Him more fully, deeper and truer.

And, after all, isn’t that what He wants most from us???

A Lament for Heidi

by 91 Comments

IMG_4338After a long 24 hour bedside vigil, I was finally able to come home, change my clothes and shower. But it’s not over. I’ll go back to her bedside shortly, and breathe in her precious smell until she smells like heaven.

I know how this goes. My youngest sister will be the fourth beloved, precious family member we will lose in just over a year.

Oh, Lord, I just don’t understand. What is going on here???

Last year, on Christmas morning no less, we first learned Heidi had a brain tumor. Later that same week we were informed it was glioblastoma – the fastest growing, most deadly and ruthless form of brain cancer with an average prognosis of 12 – 14 months Screaming into Nothingness (when God disappears). Here we are, in month 13 and she is days (maybe hours?) away from dying. Heidi is anything but average, but in death, her numbers will align fairly well with the statistics.

She will leave behind a husband, Chad, who has been her best friend since forever. They were married 23 years. Chad and Heidi have two children – Ashley, 17, a high school senior, and Nate, 14, an eighth grader. Don’t tell me they’ll be okay. They won’t – at least not yet. Their momma is about to die.

Oh, Lord, I just don’t understand.

It’s NOT okay to lose your momma when you’re a teenager. I have analyzed this situation from every angle and I can find nothing that makes sense or eases the pain. And I think I could punch someone in the face right now who tries to tell any of us how God works all things together for the good.

There is no way this can be good. No way.

Unless, perhaps…. Unless I don’t understand what “good” really is….

As a family we have all wrestled with mortality and God and His plan throughout Heidi’s illness. But one night, while in a long nighttime wrestling match with God, I suddenly wondered if His idea of good is simply not the same as ours. Maybe He doesn’t have a Webster’s. Maybe when He Google’s “good”, He doesn’t read of the things we typically think of (health, wealth, prosperity, fitting into your size 6 jeans, sipping wine along the Cour Mirabeau in Aix-en-Provence, France…)

If God is good, and I have NO DOUBT He is, then His definition of good CANNOT be the same as ours.

Because, Oh, Lord, I just don’t understand you otherwise.

It’s interesting, but in my experience, the things that we typically think of as “good” and as our “blessings” are often the things that create a separation between God and us. They are things that, often unintentionally and often subversively, lead us to believe we don’t need a God. Things like enough money (or too much), enough food (or too much), enough vacation (or too much), enough or too much of everything, as well as the absence of disease and absence of trials.

Conversely, it is the sufferings of this life that bring us to our knees and to the place where we find our desperate need of a Savior.  And I believe that more than anything God longs to draw us closer to Him. He wants nothing more for all to come to know him and accept the saving knowledge of Jesus Christ as Savior.

So what if maybe, just MAYBE…., in God’s dictionary, “health” is not the absence of disease, but, instead, one who knows he/she is nothing apart from Christ, and that we live and breathe and have our being in Him alone.  Since God IS good, and longs to give us good things, MAYBE, “health” has nothing to do with our physical bodies.

Maybe, in God’s dictionary, “wealthy” does not refer to one who has a hefty savings and retirement account, drives a fancy car, and owns all manner of material possessions. Maybe being wealthy actually means to understand that friends, family and a purpose in life are some of the richest gifts offered to us. Maybe we’re rich when we realize how little we actually need “things” and start living more simply – when we have more time for people instead of accumulating and maintaining our “things”.

Maybe wealth is the opposite of what we always thought.

Maybe, in God’s dictionary, a “blessing” isn’t a concept we can actually get our heads around. Maybe, saying we’re “blessed” when referring to health, wealth, jobs, children and good fortune causes great pain to those struggling with cancer, infertility, unemployment, a prodigal son/daughter, rape, poverty, oppression, rejection, loneliness, etc. because it implies God has withheld His blessings from those people.

ESPECIALLY – oh especially – when we Christians suggest it is the LACK of faith that produces suffering in this life are we guilty of serious theological malpractice!

Are suffering people NOT blessed???  Are we able to escape all trouble and heartache if our faith is simply strong enough??? When people suffer from the evils in this world is it a reflection of their lack of faith???

Hell no.

It just can’t be. Or God is not good. God must have a different definition of “blessed” then we do.

Otherwise, God, I just don’t understand.

So, I decided to start reading God’s dictionary. I cannot make sense of Heidi’s passing any other way. I need a God who IS GOOD. One whom I can trust even when I’m angry at Him. One who IS PRESENT everywhere. One who doesn’t pick and choose favorites and grant the rich, the beautiful, and those born into first-world countries more “blessings” than the rest.

This is what I found in God’s dictionary:
“Blessed are the poor in spirit – for theirs is the kingdom of heaven.
Blessed are those who mourn – for they shall be comforted.
Blessed are the meek – for they shall inherit the earth.
Blessed are those who hunger and thirst for righteousness – for they shall be filled.
Blessed are the merciful – for they shall be shown mercy.
Blessed are the pure in heart – for they shall see God.
Blessed are the peacemakers – for they shall be called children of God.
Blessed are those who are persecuted because of righteousness – for theirs is the kingdom of heaven.” Matthew 5: 3 – 10

So as I resume this bedside vigil there are TWO things I can know for sure: Chad and family will be comforted. And Heidi, well, she shall soon see God, for she is truly pure in heart.

This precious family does not have the “blessings” that most people think of – they are in the valley of the shadow of death and this is an impossibly sad and difficult place. But, I’ve just GOT to believe that according to God’s dictionary, they are blessed indeed.

Otherwise, Lord, I just don’t understand. You just don’t make any sense to me.

And then the Lord said to me:
“Trust in the Lord with all your heart, and lean not on your own understanding.” Proverbs 3:5

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

by 8 Comments

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!”

*********

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.

images

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… 

********

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.

A Thank-you to Cancer and Other Ugly Nasty Diseases

by 2 Comments

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