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Lymphangioleiomyomatosis

I AM OUT OF CONTROL

March 22, 2020 by Cindy DeBoer 11 Comments

When we lived in Morocco, every single day felt like a monumental challenge. It certainly wasn’t because of the people (they were incredibly kind, generous and welcoming). The challenge primarily came from being so out of place – so keenly aware we were foreigners and didn’t have much sense on how to navigate an alien nation. Simple things like retrieving cash from an ATM, adding minutes to our cell phones (no iphones there), getting groceries, visiting the orthodontist, buying underwear, paying bills, etc., etc. were all accomplished so differently from what we were used to they’d suck us dry of time, energy, and brain space. The language barrier also played a part (we often complained of headaches in the evening from speaking French all day long).

For example, we had to pay our utility bills in person in the nearby village. Payments had to be in cash, in an envelope, in the exact amount. If you forgot the envelope or needed even 10 dirhams back, they’d refuse the payment. If you couldn’t say your address clearly in either Arabic or French, they couldn’t process your payment. Some days the office was closed (for no apparent reason) so it was a crap shoot if you’d be able to make your payment or not. It was an enormous headache (quite different than having your bills electronically paid each month…)

Because life was so hard in Morocco, I was immediately stripped of cockiness and confidence. I quickly learned how incredibly incapable, insufficient, and dependent I was. I had NO CONTROL.

We had only been their a few weeks when I woke up one morning paralyzed by fear. I couldn’t imagine getting out of bed and facing the day – there was just so much unfamiliarity and overwhelming newness bombarding me each day, I was beyond exhausted and discouraged. I remember thinking, “I don’t even want to swing my legs over the side of this bed because when my feet hit the ground, there’s no turning back.” So I cried out to God and said, “I can’t do this without you, God. I can’t even let my feet hit the floor until I know you’ve got me completely covered. Help me, God. Help me.”

And every morning, for four years, before arising each morning, I said that little prayer. It’s the only way I dared to start the day. I could have never survived Morocco without that prayer.

Sadly, we had only been living back in Michigan for a few weeks when I realized I had ceased that morning practice. In America, it was just so easy to accomplish everything and I could do it all on my own. In America, I’m confident, self-sufficient, capable and energized. Simply getting money from the ATM is a no-brainer and I use NO brain space whatsoever. The same is true for the doctor’s office, grocery shopping, talking to the neighbors, and parent/teacher conferences. Life’s so simple, uncomplicated and easy back in America, it’s almost as if I don’t need a God anymore.

So it’s no wonder I stopped inviting God into my day before swinging my legs over the side of the bed.

Then came COVID-19.

I have a nasty debilitating, progressive and degenerative lung disease. I am in that “high-risk” group that those in the media treat as disposable by constantly reminding the public that the old and weak are going to make up the bulk of the dead, so the rest of the population need not worry so much.

But because of my lung disease, COVID-19 has given me a new wake-up call and once again reminded me how OUT OF CONTROL I really am. My life is not my own and I am at the mercy of a virus that not even the brightest minds in this entire world can explain or predict.

Every day I wonder if this is the day.

So I’ve returned to that morning practice that I should have never stopped. Before I even swing my legs over the side of the bed, I pray: “Okay, God, this day is yours. You alone know the pathway of an unseen virus. This is all in your hands and I MUST trust your sovereignty. Whether I live or die or am asked to simply sit here for another 12 weeks, give me peace. Whatever your will, Lord, I don’t want my feet to even hit the ground until I know you have me covered.”

And then I get out of bed. My feet hit the floor and I say, “Here we go, Cindy.” It’s weird, but I truly feel like no harm can befall me. Even if the COVID-19 finds me, I know that virus can never steal my joy. Am I afraid? You bet. But I KNOW that I am covered – and that covering makes all the difference.

Tell me, my friends, how are you covering yourselves in this unprecedented crisis? I’d love to hear all your innovative ways!

Filed Under: COVID-19, Joy in the Journey, Lymphangioleiomyomatosis, Morocco, Prayer Tagged With: COVID-19, LAM, MOROCCO, PRAYER

Derailed

March 5, 2020 by Cindy DeBoer 28 Comments

We became empty nesters last August. Because I feared boredom and purposelessness – as well as the fact my medications cost an astronomical amount and my employment offers better prescription coverage – I decided to go back to work full-time. Additionally, after shelving my career for 20 years to raise kids, I was excited to get back into nursing – especially psychiatric nursing.

At least that’s what I told people.  

Another truth is this: I had a big ‘ole chip on my shoulder. I was hell-bent on proving that I physically had what it takes to work a fulltime job like any other healthy 53 year old.

And I did it. I showed myself and the world I can work full-time. But I am definitely not healthy.

I also proved I was living in denial.

The truth is I have a lung-sucking disease and working full time has nearly been the death of me. I kept the job afloat, but nothing else. For seven months I’ve basically done two things: work and sleep. With zero energy left after a day of work, and every day home spent sleeping, I soon felt the sting of deteriorating relationships. I didn’t Skype my kids as much as I/they wanted to. I didn’t spend near enough time with my mom – our last living parent – and I missed her. I had no energy for lunch dates with friends or volunteering in our neighborhood.

Although my pulmonologist says exercise is essential for protecting the last bit of healthy lung tissue I have left, I’ve had no energy to do that either. On top of all THAT, I’m now probably damned to hell, too, because I only went to church ONCE that whole time of working so much.

And maybe, just maybe, the worst part was this:  I stopped writing.

SMELLY PEOPLE GOT ME BACK ON TRACK                                                      

I recently scooted in to my neighborhood Dollar Store that’s sandwiched between an Iraqi-owned liquor store and a Psychic Angel who takes walk-ins. I was running late (surprise!) and I sighed in frustration when I got to the counter and was fourth in line. (The Dollar Store is not typically known for it’s speedy checkout, if you didn’t know…) First in line was a toothless woman, smacking her gums, buying a full week’s worth of groceries. ARE YOU KIDDING ME??? The next lady sported a good five-day bed-head, wore pink footed pajamas underneath her coat and boots, and was purchasing four 2-liters of Mountain Dew. AT 9:30 IN THE MORNING??? The guy just ahead of me was lugging his oxygen tank, breathing like Darth Vader, and buying cough syrup, cough drops and fever medicine. LORD, PLEASE LET THIS NOT BE CORONA!!!

My three compatriots smelled like cigarettes, booze, bacon, and body odor.

I rolled my eyes and checked my watch. These neighbors of mine who shop at the Dollar Store to meet all their needs were making me (more) late. I was angry and somewhat disgusted with them. Then the old man ahead of me turned around, and with twinkling eyes and a smile said: “Good thing no one’s in a hurry.” His breath was so hideous I nearly fainted. But God used all those smells to reorient me.

A few years ago, when we moved to the city, I chose my new grocery store in an unorthodox manner. There are two lovely stores close to our home – always clean, well-stocked, nice checkout clerks. But just to the north, through the roughest part of our neighborhood, is one of Michigan’s oldest Meijer stores – but it doesn’t smell quite right. There have been murders in the parking lot. With my first visit, I immediately knew this would be my new “home” store.

Paul was inquisitive about this decision and I explained, “We came here for diversity. I don’t want to smell perfume and flowers when I go shopping, I want to smell humanity.”

Standing in line at the Dollar Store I was struck by how derailed I’ve been. THESE three in line ahead of me are my people! These are the people we moved here for! These are the smells I love because it represents REAL people with REAL needs and REAL hurts. I don’t want to live in a fake utopia. I want to live in the real world and be constantly reminded of the reality of suffering. That is why we moved to Grand Rapids – to DO LIFE with these neighbors.

More than anything, we moved to the city so we could encounter people not like us and spend time with them and learn from them. The LAST thing I wanted to be was too busy, too important, or too good to love them! The LAST thing Paul and I ever wanted to be were typical rat-race-suburbanites simply transplanted to the city and subsequently disgusted with the people around us!

I had been derailed! I forgot who I was!

REMEMBER WHO YOU ARE, AND WHOSE YOU ARE

Feeling fairly healthy these last seven years, I’d forgotten a bargain I’d made with God. When I was first diagnosed with LAM, I had told God I’d live my life solely investing in the lives of others if he’d just give me 10 more years to live. But as time progresses and it appears maybe I’ve drawn the long stick with this LAM disease and might even live considerably longer than 10 years, I forgot about living my life with total intentionality. Sure, I can make good money working, but there’s not a damn thing I want in this life that money can buy.

And then – dang – if God didn’t use ZEPHANIAH of all books to speak to me this week: “I will bring such distress on all people that they will grope about like those who are blind, because they have sinned against the Lord. Their blood will be poured out like dust and their entrails like dung. Neither their silver nor their gold will be able to save them on the day of the Lord’s wrath.”

I had made plenty of “silver and gold” during my derailment, but I’m terrified of the thought of my entrails spread out like dung because I had chosen money over matter.

THE BEAUTY OF DERAILMENT

However, the good news is this: derailment does not have to mean train wreck. It doesn’t mean all is lost. It doesn’t mean throw in the towel or burn it all down. The beauty of derailment is that, if we’re willing, it can be corrected.

God never moves, but sometimes we do. His train tracks are eternally secure, we just sometimes veer off them. But he is always patient with us and will wait as long as it takes for us to get back on track.

“Let us examine and probe our ways, and let us return to the Lord.” Lamentations 3:40

“And I am confident of this very thing, that he who begun a good work in you will be faithful to complete it until the day of Jesus Christ.” Phillipians 1:6

So I’m back to volunteering, spending time with friends and family, and taking long walks with Paul while we solve the world’s problems. And I’m back to writing again.

Here we go!

(p.s. If you want to stay informed of my book progress, please sign up with your e-mail address on my website so you can receive my newsletter updates and prayer requests)

Filed Under: City Life, Contentment, Lymphangioleiomyomatosis, Suffering, Terminal Illness

Fat Legs (The Ripple Effect)

October 24, 2019 by Cindy DeBoer 5 Comments

A sunny but cool 60 degree day finally arrived in Michigan and I couldn’t wait to slide into my favorite fall skinny jeans. After digging them out from under the shorts and tees, I slid both legs in and easily zipped them up. But they felt weird. The waist fit the same as I remembered from last year, but the legs… OH MY FREAKIN’ GOSH…. What’s up with the legs of these jeans? Did someone shrink the legs of these jeans over the summer? Who’s washing my jeans on the HOT/HOT cycle and drying them a thousand times in the HOT/HOT dryer? Wait, are these even my jeans???

Truth: the skinny legs on the skinny jeans were strangling my legs – and NOT because the jeans had changed. My legs were fatter.

WHO’S TO BLAME?

At first I was mad at God. He’s an easy target because you can’t see Him and see how sad you’re making him with your anger. I told God I’ve been praying about my weight and He doesn’t seem to hear me. I’m sick of you not listening to me God…

Then I got mad at Weight Watchers. Come on, you silly WW people! What good are you if you don’t help actual people lose actual weight??? But then I remembered I hadn’t been to a meeting all year. Apparently, just paying the monthly dues does nothing to get the weight off.

Also got angry at Planet Fitness (see above paragraph for same irrational logic).

But as soon as I descended the stairs, nearly popping open the side-seams of my now skinnier-than-ever skinny jeans, I realized an important concept:

OUR BAD CHOICES HAVE A RIPPLE (NO PUN INTENDED) EFFECT. THEY CANNOT BE CONTAINED TO ONE SMALL AREA OF OUR LIFE. THEY IMPACT THE ENTIRETY OF OUR BEING.

It would be nice if when I overeat, I only experience a little weight gain in say, my armpits, toes, or behind my ears where no one would notice. But in reality, weight gain affects our ENTIRE being. The effects are not only experienced externally, it also leaves a grievous impact on internal things like stress on major organs, hardened and narrowed blood vessels, as well as our ability to fight infection and regulate our hormones.

Similarly, whenever we make bad choices about how we think, live, or treat others, those choices are like cancer and they will affect the WHOLE of us. And the WHOLE of us will look and feel a little bit sicker.

AND FAT LEGS CAN LOOK LIKE A LOT OF THINGS:

When we get drunk and act gross or disgusting and then brush it off as “just having a little fun” – IT’S FAT LEGS, for sure!

We canNOT think our little “issue” with gossiping is harmless – IT’S FAT LEGS, PEOPLE!

If we tell little white lies to make ourselves look better – remember, IT’S ACTUALLY FAT LEGS!

We may be so caught up in a culture of materialism that we don’t even consider there is a relational price to pay for our choices. But what is it really? FAT LEGS!

We may believe no one is hurt by our pornography addiction. This one is FAT LEGS AND THIGHS!!!

It’s fun to go shopping for retail therapy and think it’s harmless. But is it? FAT LEGS!

Even if treating our spouses with disrespect is so habitual we contend it’s no big deal, remember… FAT LEGS!

It’s so prevalent in this society to spend hours on social media thinking it has no ramifications in our life. FAT LEGS, PEOPLE!!!

WE MUST OWN OUR ILLNESS

The hard truth is, all these things, and thousands of other bad choices we make daily, really do affect ALL of our being. We cannot contain our poor choices to only one aspect of our being and simultaneously applaud ourselves for being (mostly) healthy. It doesn’t work like that!

The ripple affect of sin in our lives – in any form, in any area – is an overall sick person.

Whenever we let bad choices, bad habits, bad thoughts creep into our everyday, the result will always be ALL AROUND less-healthy individuals. And it shouldn’t surprise us if someday we wake up with fat legs.

Filed Under: Lymphangioleiomyomatosis, Michigan, Uncategorized Tagged With: fat legs, skinny jeans

Don't Listen To Me – Go With Steve!

September 26, 2019 by Cindy DeBoer 5 Comments

Today, I planned to share how shitty I feel.

I planned to rant about my lung disease and how unfair it is that as a non-smoker I’m suffering from something totally similar to COPD.

I planned to curse a lot and tell you what it’s like to have a disease no one can outwardly see.

I planned to expose some vulnerability and tell you that all my days are not positive and sometimes I just want to cry and feel sorry for myself.

I planned to share what a “BAD LAM DAY” looks like (this is what my LAM sisters and I call them) – where simple things like taking a shower, walking through a parking lot, or taking a flight of stairs leaves me so exhausted I want to take a nap.

I planned to write a post that doesn’t end with smiley faces, exclamation points, and “Isn’t Jesus wonderful?” like I typically do.

I planned a bunch of things in my head for today’s post.

But then today unfolded…

I lead a group of 6th and 7th grade girls in a Discipleship Program at the Potters House School where I volunteer. Their Bible verse for today was this: “When Jesus spoke to the people he said, ‘I am the light of the world. Whoever follows me will never walk in darkness.’” John 8:12

I decided hearing the true life story of a blind man would fit with the verse perfectly, keep the girl‘s attention, and hopefully aid them in memorizing the verse.

So I asked Steve to come speak to our group.

About 30 years ago, as a married man with two children and one on the way, Steve began losing his eyesight from a devastating disease called: Retinitis Pigmentosa. He fought through diminishing eyesight for several years and managed to continue driving and keep his job. But, eventually, with three young children and the weight of providing for his family on his shoulders, he could no longer deny it – he was legally blind. Today, Steve can see absolutely nothing.

Steve shared how he initially bargained and became angry with God after his diagnosis. He shared how debilitating his anxiety became as he faced a future of KNOWN blindness. But the GLORY of his story comes as he realized he had only been looking at the negative side of being blind. Until one day when he imagined Jesus hanging on the cross (the most negative experience known to man: crucifixion) and he realized the cross makes a “PLUS” sign! The cross, by it’s very nature of construction, forms a POSITIVE symbol!!!

This realization turned Steve’s world around and he began writing all the things he was thankful for. He wrote POSITIVE statements about his situation, instead of negative. At one point he told our group, “In a way, I have found freedom in my blindness. You are all DEPENDENT on your eyesight. I am INDEPENDENT of that sense, so I am not bound by it. When I look at it that way, I experience a new kind of freedom.”

Steve may be the most POSITIVE and OPTIMISTIC person I know. And he’s totally blind.

First one, than two, than three tears were streaming down my face. Steve had touched me in the depths of my pain.

All I could see about LAM today was that it was disabling me, making me feel “less than” and “less able.” In a swift moment, Steve helped me to see that I’ve been made free from having to be as productive as most people. As healthy people so often DEPEND on their ability to accomplish much, I am INDEPENDENT of that pressure. My body tells me what I can and cannot do, and there’s not a darn thing that can be done to change it. So, in a sense, I am free from that pressure.

Oh friends! The JOY of the LORD is our STRENGTH! And He alone will give us the insight and power to take the hardest, most painful parts of our lives and turn them around into something that can be used for HIS GLORY!

God alone can show us the POSITIVE when all we can see is the NEGATIVE!

So everything I had planned for this blog was trashed.

Steve showed me a better blog.

Go with Steve!

Filed Under: Contentment, Joy in the Journey, Lymphangioleiomyomatosis, Suffering, Terminal Illness, Uncategorized Tagged With: blindness, LAM, Retinitis Pigmentosa

Six Critical Life Lessons Learned from a Hacker

May 9, 2019 by Cindy DeBoer 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
 

Filed Under: Glioblastoma, Joy in the Journey, Lymphangioleiomyomatosis, Suffering, Terminal Illness, Uncategorized Tagged With: CANCER, DYING, JESUS, JOY, LAM, Suffering, TERMINAL ILLNESS

On Dying Slowly

April 25, 2019 by Cindy DeBoer 12 Comments

One of the lowest, crappiest things well-intentioned people say to you when they find out you have a terminal illness is this: “Well, you know, we’re all dying really.”

Of course we are. Nobody believes these bodies will last forever. But sometimes it just stinks to be me because someone gave me a TIME LINE. I feel like I have an expiration date written on my forehead of which healthy people know nothing about. When we’re healthy (I still remember those days fondly) we don’t really think about dying. In fact, we live as if we’re immortal. While disease free, I’m not sure it’s even possible to wrap our minds around the fact that someday IT will happen to ME…

At least I didn’t. I was living like I’d live forever. Eating shit. Wasting time. Worrying about stupid stuff. Having petty fights. Chasing things. Praying only when life got hard.
These were all things I was going to work on, “Someday”.

“Someday” came crashing down hard on me when “Someone” gave me that lifetime-timeline with an “approximate” end-date. Of course, no one knows EXACTLY when that end-date will be. But, more than likely, my life will be truncated dramatically by this stupid disease.
 
HOWEVER….
 
(In any story worth telling, there should always be a big HOWEVER, right?)

HOWEVER…. With only a few years since my diagnosis and the subsequent slowing down of my life, I’ve learned about a million new things that I wouldn’t have known otherwise.
 

1) Dying slowly provides opportunities to do some life editing.

When people die suddenly (at least those who are past their prime) we humans like to console one another and say stupid stuff like: “Well, at least he didn’t have to suffer”, or “What a wonderful way to go –one moment on earth, the next moment with Jesus.”
I get why they say that stuff. Truth is, no one knows what to say to the dying or the grieving. We all just clamor for a few words and they always come out sounding stupid.

What I do know from my own experience is that when you find out your life may be cut short by an illness, but not immediately, you are left with a lot of time to think.
Some people, upon learning their days are numbered, might run out and get busy, busy, busy – doing all the things they’ve always wanted to do and seeing all the people they’ve ever known. Not me. I’ve SLOWED way down. I’m sleeping more (a holy activity, if you ask me), I’m praying more, watching nature more, sitting quietly on my porch and just thinking more, and doing LESS of the things that people generally ascribe importance to in their lives: work, entertainment, social engagements, etc.
Some days, every breath feels so incredibly holy that I just want to sit in silence and savor it. I want to thank God for every inhale and exhale and I don’t want to miss that opportunity by being busy. Dying has put God right in my face and being busy makes me feel like a shmuck because I can so easily ignore Him.

And so I think God gave me the opportunity to die slowly in order to ditch some baggage and edit my life down to a quieter, slower, better version of myself.
 

2) Dying slowly gave me new eyes to see things I’d previously overlook.

The tree outside my office window (the reclaimed crack-room) had small buds for leaves one day, and on the VERY NEXT DAY they grew an INCH! Yes, I measured!!! An INCH, my friends, in less than 24 hours!!! Do not tell me there is no God.
Squirrels can actually mate on the run. It’s true. I watch them do it on the regular from my little crack-room-office.

Whenever Yulisa is excited or has exciting news to share with me her right eyebrow pops up just a little higher than her left one. If her emotion is better described as happiness, then her eyebrows stay even.

There is a very disheveled man who meanders through the parking ramp of my downtown market every Tuesday and begs people for money. Only on Tuesdays. And he smells like homelessness and his shoes have holes in them. The first time I stopped, looked him in the eye, and told him I’d buy him some bread and apples, he looked directly back and me and said, “Thank-you. And Thank-you for noticing me.”
 

3) Dying slowly gives you time to say all the things you’ve meant to say, or should have said, or simply haven’t said well in the past, to all the people you love the most. 

I’ve got some work to do on this yet – but I’m glad I still have more time to do it. I’ve tried to reach out to all the people I knew I had hurt or at least fell short on my end of the relationship responsibilities and I’ve asked for forgiveness. I know there’s more out there, and I hope I can talk to them all eventually.

My sister Heidi had 13 months from diagnosis ‘til heaven – and she was very sick and battling fiercely the entire time. She was robbed of the chance to leave much of a written “love letter” for her family regarding their futures. I’m still mad at God for that. So I’m trying to write down all the things I’d most likely say to my kids when I’m in my 60’s, 70’s, 80’s – just in case I don’t see those decades. I also want to address my future sons-in-law and future grandchildren in case I never get to meet them.
 
 
I think if I spent a little more time on my porch quietly thinking I could expand this list to at least 25 things – because OF COURSE there are more than THREE things that dying slowly has taught me. But they say blogs should never be more than 1000 words…. Whoever “they” are must know that you, the reader, are losing interest right about now….

I’ll just say this: Dying sucks always. Dying immediately like my cousin Zac at 23 in a tragic car accident, or my friend’s father by heart attack, or the lady down the street who’s husband passed in his sleep leaving her with 10 kids – those situations suck WAY worse than mine. I have found some solace in dying slowly and I’m trying to make the most of it. 

Do not feel sorry for me. But instead, thank God for all the ways He uses evil in this world to draw others toward HIM!!! I am.
 
 
 
 
 
 
 
 
 

Filed Under: City Life, Glioblastoma, Homelessness, Joy in the Journey, Lymphangioleiomyomatosis, Prayer, Simplifying Life, Suffering, Uncategorized Tagged With: CONTENTMENT, DYING, HEAVEN, JOY, LAM

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