Don’t Listen To Me – Go With Steve!

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 girls 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!

Six Critical Life Lessons Learned from a Hacker

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

 

On Dying Slowly

IMG_4907.jpgOne 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.

 

 

 

 

 

 

 

 

 

The Worst Houseguest Ever (and how to get rid of her)

We’ve had the worst houseguest all winter. In fact, I’ve never despised anyone more. It’s bad enough she showed up unannounced – but now she hangs out in the WORST possible places, and REFUSES to leave! I’ve been downright rude to her and I’m always telling everyone how much I hate her, even when she can hear me. She doesn’t care. She won’t leave and her annoying presence aggravates me more and more every day. So I started serving her all the nastiest foods: kale, green smoothies, turmeric tea, brussel sprouts. In fact, all the sprouts. She, however, laughed in my face and propped her feet up on my coffee table as if to say, “I ain’t goin’ anywhere, girlfriend. Get used to it.”

I told her in no uncertain terms that I will never get used to it! I refuse to give in to her obstinate and demoralizing ways. She will never get the best of me and I’ll kill her if I have to – but she is NOT stayin’!

So in yet another attempt to get her to leave, I signed up for a membership at Planet Fitness. This will surely piss her off, I thought. She lugged along with me to my workouts and again, very condescendingly laughed at me when I was sweating after just 15 minutes and struggling to get through a full workout.

This is the MOST unwelcome guest I’ve ever entertained. And I never even meant to host her – she just kind of appeared. Slowly… I noticed her more and more and more. She just latched on – attached to me like a barnacle, a leech, a life-sucking demon.

So now, in an effort to destroy the guest I never wanted, I go to Planet Fitness as much as possible. But the problem is, I hate Planet Fitness, too. It’s so depressing because I feel like everyone’s grandmother. It doesn’t help that I live in a college town and all the perky little college girls wear painted on leggings over their perfect tight butts and strut around with all their trendy tattoos and bras for shirts. And even though this college is my alma mater, I think they now disregard literacy as a criteria for admission. Although I am clearly perched DIRECTLY beneath the words “Judgment Free Zone” – I can still feel their glaring weasel-y eyes on me as they think “I’m never gonna let myself go like that mom. When I’m old, like her, I’ll still wear these tight-ass leggings and turn heads at the gym.”

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College girls at my Planet Fitness look like this. Seriously??? No wonder I feel like poking my eyeballs out whenever I leave.

My mom says paranoia runs in our family – but I think she just tells me that to get in my head and watch me self-destruct so she can tell the rest of the family and all her condominium friends what a nut-job I am when they admit me to the psychiatric hospital where I work…

And on this one particular day, with my stupid guest latched heavily to me, my soul was especially downcast. I was feeling so burdened with my health issues, a body that felt like it was failing me, and just overall feeling “less than”. What I really wanted to do was stay in bed til Memorial Day, but somehow I’d found a modicum of strength to drag my sorry ass to Planet Fitness.

I found my favorite treadmill right underneath the sign “Judgment Free Zone” just in case any college Barbie dolls forgot the rules. I walked/ran for as long as my compromised lungs would let me.

I wanted to cry. My lungs said, “Stop! We’re hurting!” My unwanted guest said, “I told you I’d never leave! You are stuck with me forever strapped to you!” My feet said, “Will you ever break down and buy some orthopedic tennis shoes???” My head said, “Face it, Cindy, you are old, fat, and irrelevant.”

My heart said, “I’m broken. Let’s get out of here.”

So I bolted for the door.

And then….

HOLY OF HOLIES….

A beautiful college-aged brunette who was working the Planet Fitness desk – her Chemistry book open on her lap – looked up at me, smiled, and said, “I like your hair.”

I looked over my shoulder convinced she must be addressing someone else. There was no one else there.

I pointed to myself as if to say, “Who me??? This old lady here with enough extra weight I’ve even personified it as an unwanted guest??? This embarrassment to the Planet Fitness establishment who couldn’t even exercise a full hour? You mean me???”

She said, “Yeah. It’s cool. I like the color and the cut.”

Flabbergasted. I’m pretty sure I forgot to say, “Thank-you.” or even a meager, “And I like your tight leggings”.

As soon as I was in my car I sheepishly checked my hair, “You know, your hair really ain’t too bad. It’s not grey yet. And with just a little highlighting help in the winter, the color’s not disgusting. Maybe you’re not a total loser…”

And I literally felt my head lift a little. I felt the unwanted guest shrivel up a bit as I decided to face her head on, admit she was all my fault, and commit to eliminating her entirely. I felt the sun peak through the clouds. I felt like God himself was saying to me, “I love you. I don’t care about a few extra pounds. I don’t care about what others say or think about you. You are special to me and I’m especially fond of you.”

And that, my friends, is the power of ONE COMPLIMENT. My whole view of the world shifted in that moment with one simple remark. And I stepped out of Planet Fitness that day having learned some priceless things:

  • We absolutely CAN change the world one smile, one kind word at a time.
  • WE get to choose the narrative of our lives. There’s much we can’t edit (disease, death, loss, trauma, broken relationships, etc.) but we CAN choose the direction of the story based on our response to those things.
  • Don’t underestimate the power of our words – both for the good and the bad. Use them wisely!
  • Listen to God. His words are always best.
  • Go to the gym. It doesn’t totally suck.
  • Don’t eat the tootsie rolls on the way out of Planet Fitness! Can you say, “Saboteur”???

Go get ‘em friends! Show those unwanted guests the door! Anything in your life that you didn’t want and didn’t ask to take up residence – maybe it’s jealousy or anger or fear or drinking or extra weight or working too much – whatever it is, tell it to take a hike and  get back the life you know is yours!

(And if you’ve ever worked at Planet Fitness and you tell me that employees are instructed to compliment patrons who look like they’re on the verge of tears, I DO NOT WANT TO HEAR IT AND I WILL UNFRIEND YOU FASTER THAN YOU CAN SAY “LEGGINGS”!)

 

 

 

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

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.