If I Had Only Nine More Years Left to Live

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

It’s like my own constitutional amendments…
1)  Contrary to what I wrote a year ago, I will NOT be keeping Snickers in my car 100% of the time to have on hand for panhandlers.

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

2)  I will watch less volleyball.

I adore my daughter and want to fully support every endeavor that is important to her (and all five of my kids). However, the amount of time that sports are sucking from the life of our generation is sickening and I don’t want to be a part of that madness anymore.
Our culture has dictated societal “norms” for sports involvement that simply require more from our family that we’re willing to give. There is a great quote by Krishnamurti that made me realize I was succumbing to a dangerous trend: “It is no measure of health to be well-adjusted in a profoundly sick society.”

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

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

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

4)  And this whole Ferguson mess taught me something: I need to make some black friends.

One of the richest experiences of our lives has been living in Morocco and making true, deep, lasting friendships with Muslims. When Islam has a name, a face, an address, a friendship, it changes your perspective on all things “Islamic”. I love these people in Morocco. And they love me. And so I’m extremely cautious before deriving any kind of conclusion about what is really happening is the Muslim world.

During the Ferguson debacle, I realized I don’t understand racism in America hardly at all. While in America, I have largely lived in an all-white, middle-class, Christian bubble. I didn’t mean to do that – it just kind of happened. I certainly don’t know enough black people deeply enough to say I can understand their life or our differences. That fact made me so sad. I tried to keep my mouth shut through all of the debates going on over that mess in Ferguson. Maybe I’ll weigh in when I have a bunch of black friends and feel I understand their hearts better. I’m not talking about exploiting some fake friendships. I really do want some black friends – and I just want to acknowledge that right now I’m ignorant. And ignorant people should keep quiet

5)  This past year has taught me I need to spend LESS time with my mother-in-law…

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

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

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

In fact, THAT’S IT! – That’s what you do when you feel you’ve been given your expiration date…. You pare it all down to the necessities – discovering what it is that you truly need and what truly makes you feel most alive!!! Thank-you, Jesus, for coming to earth a baby, living to know all pain and suffering, dying to conquer death, and being ALL that I would truly ever need.
“For lo, I bring you good news of great joy that shall be for all people. For unto you is born this day, in the city of David, a Savior, who is Christ the Lord.” Luke 2: 10, 11

Ignorance is bliss, but knowing is better.

 

Traveling home from Africa this time was the most hellish trip ever.  It wasn’t for the fact there was a crying baby on every single flight.  It wasn’t for the fact my daughter accidentally packed her shampoo in her carry-on creating a long delay for us during security checks.  It also wasn’t for the fact that her “slip up” must have, apparently, created terrorist suspicion of me, so the Frenchy she-man, who knew we were dangerously close to missing our flight, proceeded to slowly comb through my carry-on with microscopic detail – making me open up all our Moroccan gifts of nuts and dates then sniffing and fingering them, then sifting through each tile of our Bananagrams and Pairs of Pears games, followed by unwrapping our bubble-wrapped Moroccan pottery, and even frisking all my dirty underwear (seriously?) – causing us to sprint to our gate to catch our connection to London.  It wasn’t for the fact that the video system was broke on our long flight so we couldn’t watch any movies, or that the 8 hour flight was extended to 9 from poor weather, or that even my African-mutt street dog would have pulled up her nose at the in-flight food.  And it wasn’t even made hellish because we landed in Chicago in the middle of a “Polar Vortex”, where much of the city was paralyzed from arctic temperatures hovering at -25F keeping us stranded in Chicago for a night.
No, it was none of those reasons that made this the worst trip ever.  It was because we were suffering from a bad case of “knowing”.  Knowing means you can’t, or at least shouldn’t, ignore the problems anymore.  We have always told our kids, “With knowledge comes responsibility.” This plane ride was painful simply because we had been reminded once again of our responsibilities to those that are struggling in the world and we were forced to confront the truth that we had grown dispassionate.
Spending this past week in Morocco was like peeking our heads out from under the covers of our warm, comfortable bed.  We smelled, tasted, felt and experienced life outside of our peaceful, safe, suburban-middle-class, American slumber.  When you peek your head outside the covers the immediate frigid cold blast that slaps your face is the realization that much of the world is suffering.  It suffers from the relentless grip of poverty, it suffers under the tyrannical rule of dictators, it suffers as children are forced into slavery and to be soldiers in a war they don’t want or understand, it suffers as girls (even as young as 6 yrs.) are chained to beds naked and forced to have sex as often as 20 times a day, it suffers as families who fear genocide must flee from the only home they’ve known and move to another country to live in a tent and squalor for decades, and it suffers when all these things and so many, many more are taking place this very moment and we refuse to do our part.  If I am honest, I must admit that our 2 ½ years back in the states has slowly induced a state of drowsiness, where we were sheltered from the world’s problems and were focusing more on ourselves and our stupid little first-world problems.  It happened insidiously, but we had begun caring too much about things like finding all the right Christmas presents, our kids’ getting enough playing time in their sports activities, our favorite collegiate teams winning in sports, having the right outfit to wear to parties, redecorating our house, or planning our next vacation.  Do not misunderstand me here:  none of those things are necessarily bad in and of themselves.  But if we allow these things to define our existence, then we may need to stick our heads out from under the covers.  The world is huge, the needs of this world are catastrophic, and I believe we are NOT supposed to live in a myopic, self-serving slumber, but that we have been called by the Creator of this Universe to engage somehow, some way, to bring the kingdom of heaven to earth.  To do that, we must be informed of the great needs of our day, whether in some far-off land, our own city, or our own backyard.  And then, with palms open heavenward, dare to ask of God, “What about me, Lord?  How do you want to use me?”
I have often wondered if the reason our Lord has tarried so long in returning is because He was waiting for the information age.  He knew that there would come a day whereby the click of a button would give us access to information regarding the human condition everywhere else in the world.  Before the internet, I’m not sure we would have been held accountable for understanding and responding to the suffering in the world.  Now, we have no excuse.  We all know.  Or do we?  We also can choose to not click that button and not look at what is happening outside the warmth and comfort of our plush, 400-count, down-filled duvet covers.  We can keep our heads buried if we want to.  We can choose ignorance – and maybe that feels good for a time because we don’t have to own the pain of the world’s suffering.  I will agree – it is painful to stick your face out of the covers and experience that cold blast wake-up call.  But as we flew home on that treacherous, hellish flight, and as I wrestled with the pain of “re-awakening” to the suffering in Morocco, I decided ignorance might be bliss, but knowing is better.  I refuse to live my life choosing to ignore that which I believe God has called us to engage.
When I didn’t know I had this incurable lung disease, I was blissfully ignorant.  Those cysts have been on my lungs for many months, probably even years, I just didn’t know it and I lived my life as if they were NOT there.  I was aimlessly meandering through life almost as if I were immortal – believing there would always be time later to get my life in order and do the really important stuff.  When I first received my diagnosis I was devastated – furious with God to the point of giving Him the silent treatment (27 years of marriage and resorting to the silent treatment in our big fights and I still haven’t learned that it is childish and entirely useless…).  Yet, I now see that God was lovingly allowing me to come to terms with my mortality.  And it is because of that diagnosis that I re-evaluated everything and am choosing a more pointed, focused and engaged life.  It was nice when I didn’t know about the disease because I could ignorantly live my life under the warm and comfortable covers and believe everything to be just fine.  Yet, my lungs were being invaded by disease!  Everything was not fine at all!  Even though I’m now aware this disease may take my life, and it was pure pain getting that news, I still believe knowing is better.
One day, after I had received my diagnosis, I was sitting in our comfy chair facing out to our wooded backyard.  I sat in silence with God and felt a chill down my spine as I took in the view.  Everything appeared incredibly spectacular:   the sun seemed brighter than ever before, the snow seemed whiter, a cardinal perched on a low-hanging tree branch seemed redder, and the sky seemed bluer.  I soaked it all in and found myself acutely aware of every single gifted breath I was taking.  I knew I’d been given new eyes – and I saw that all things had become more remarkable and noteworthy and magical – and I don’t think I would have taken back my old eyes even if God had offered.
Ignorance is bliss, but knowing is better.

If I only had 10 more years to live:

The phone finally rang – two days, three hours and fifty-seven minutes later than it should have.  I was a shredded pile of emotions from the waiting.  She took an infinitely long breath, cleared her throat, and dealt the blow:  It is as we feared – lymphangioleiomyomatosis.  I know what you’re thinking:  that’s not a word, it sounds like a kindergartener made it up.  It’s most definitely a word and it’s definitely no joke.  While initially I was relieved that it wasn’t the “C” word – the one disease we’ve all learned to respect – now I’ve come to wish it were.  I remember learning in nursing school that cancer should really be viewed as a curable disease.  Many times people with cancer receive successful treatment and are cured and we need to stop thinking of that diagnosis as the kiss of death.

 

Not so with lymphangioleiomyomatosis (or LAM, its kinder acronym).   It is not curable.  In fact, “they” – those great minds of the medical elite – make no concessions about that.  “They” don’t even know how you get it or how to treat it.  Paul and I have been to multiple physicians and even drove across the state to the University of Michigan and talked to the most special specialist who specializes in LAM.  I have also now read from nearly hundreds of websites – six weeks since I first heard there was an evil in the world called LAM.  Six weeks since “they” first suspected I have it. 

I am 47 years old.  I basically feel healthy and strong, but for years I have wondered if I was more short of breath than I should have been.  Although I can walk for miles, I couldn’t really carry on a conversation while walking, and try as I might, I was simply unable to run for lack of air.  I blamed it on being 20 lbs overweight and vowed that someday, when I finally got in shape, I’d run a marathon.  I was also more tired than I wanted to be – but I blamed that on four kids, multiple moves overseas, middle age, and an affliction that makes me unable to say “no”.  And, apparently, I cough.  It doesn’t bother me any, but I’m finding out my loved ones have noticed it (a lot) and find it rather annoying.  But I would have sworn to you I’m not sick – just, well, a little bit not quite right.  But now “they” have assured me those are all symptoms of a disease which initially lets you appear healthier than you are.  I guess LAM has started to take over my lungs and moved toward my kidneys.  And slowly, I will find it harder and harder to breathe until I simply cannot.  “They” say this takes, on average, ten years.

Where does one even begin to process that?  Before we even started telling family and friends – or our own kids for that matter – I was thrust, unwillingly but entirely necessarily, into a mind-numbing exercise of trying to make sense of all that is life, and all that is death, and how to fully live in every gifted breath.  I hope, and believe, that as my plus or minus ten years progress, I will discover more about the meaning of life and that I can exit this reality with more peace than I have today.  Because today I’m still a bit of a mess.

 

One day, or maybe it was night (they’re all a blur lately), while being swallowed both in self-pity and a sea of snotty Kleenex, I decided someone with a terminal illness should probably make a bucket list.  Ten years is not near enough time to do all the things you thought you had 40 years in which to do them.  My list included many things one would expect to see on a typical bucket list:  see “Wicked” on Broadway, visit Machu Pichu, walk the great Wall of China, run a marathon, see Coldplay in concert, hike the Himalaya’s, learn to speak Spanish, sky dive, etc.   

 

But before I even got to #9, I had a revelation.  I realized that if I really only had 10 years left, I better first figure out the pointto this life and then waste no time trying to get there.  I don’t really have time for pointless activities – unless of course they were done with people I loved – but then, that would be the point.  The more I thought that through, the more I was convinced I couldn’t (wouldn’t) make a bucket list full of typical things one does before one dies.  Because, I reasoned, those typical entries were all deposits made into “ME”.    Places I wanted to go, wonders I wanted to see, things I wanted to do – all of which, are all for ME.  With only 10 years left, why would I only make deposits into ME?  When I die, those deposits all die with me.  The only legacy one can possibly leave behind that makes any sense at all is a deposit into OTHERS.   What I really must do for the last 10 years is pour whatever energy I have left in me into other people. In my less selfish moments, when I’m not grieving over the fact that I will be robbed of maybe 20 or 30 years on this planet, I have concluded I must spend my years sharing the love that I believe can only be found in Christ Jesus my Savior.  I want to live like Him – just extravagantly loving others and pouring myself out for them. 

 

So,  this is my better bucket list: 

 

  • I want to spend as much time with my four children as they’ll allow.  I’m aiming for a melange of Carol Brady, Claire Huxtable, Maria von Trap, Mother Mary, and Olivia Pope – praying that even a sliver of good in me can be majorly multiplied in them growing them into good, kind, compassionate, hard-working, self-less givers who are musical, wickedly smart, and forceful world changers. 

 

  • I want to be spending unhurried time over long lunches with friends who feel like they’re being trampled from the hurried masses, beaten down by the world’s injustices, or crushed by the pressures of a culture run amok  – and simply listen.  We’ve all got crap we’re dealing with – but we don’t often find good listeners with whom we can safely spew our crap.  Dear Lord, make me a big crap loader. 

 

  • I want to walk Buddy, my Holy Spirit she-dog, through the trailer park and let all the children (some who, I fear, are bearing physical and emotional wounds from their tired, over-worked, and underpaid daddies) pet her and play with her and forget their troubles for just a few moments.  

 

  • I want to spend unsolicited coffee-time with my sweet and self-less mother-in-law who is slipping away slowly and barely remembers my name these days. 

 

  • I’m going to be all about letting my 12 year-old daughter climb up on my lap even though she is entirely too old to be doing that sort of thing, but entirely able because she is from Guatemala – a country where they just make smaller people. 

 

  • I want to drink wine with our friends until we’re giddy and foolish and we let some buried things bubble-forth and then we laugh and cry together as we realize this was the very therapy we needed. 

 

  • I want to take longer showers (My husband must be thinking:  is that possible?) – but like most people,  that’s where I get my best revelations.  Often, I feel God reveals to me random people from my past which feels like a prompting to reconnect:  Kathy Henderson from nursing school, Diane Marker from Davenport,  Stephanie Saumon from Aix-en-Provence, Julie Jones and  Stacey Johnson  from Casablanca and countless others – where are you now,  my sweet friends?  And do you randomly think of me as often as I randomly think of you? 

 

  • I want to keep visiting our poorest of poor friends in Morocco and just sit with them, accepting their extravagant generosity, while we wrestle with the pain of how much we have and how much they have not.  And loving them deeply, without necessarily fixing their problems. 

 

  • I’m going to keep a large bag of Snickers in my car at all times so I always have something to give a pan-handler.  Since I am running out of time, it doesn’t look as if I’ll be able to solve the problem of poverty and homelessness in America – or for the rest of the world for that matter.  And that beats the hell out of me because I so wish I could.  But possibly, for this moment, on this day, for this one person, I can at least hope to spread a flicker of sunshine.  Besides, who doesn’t love Snickers? 

 

  • I’m going to work hard at forgiving those who wounded me unintentionally.  Harder yet – forgiving those who hurt me intentionally.  And why stop there?  I want to bless them, too. 

 

  • I’d like numerous fireside chats with our neighbors making time for sharing stories.  But also watering their flowers, feeding their dogs, eating their cherry tomatoes, giving their kids popsicles – so they are much more than “the people with the white car”, but they are fellow sojourners whom we actually share life with on our little cul-de-sac in Hudsonville. 

 

  • I think I’ll watch more comedians.  Brian Regan, Jim Gaffigan, Stephen Colbert (don’t judge) and Tim Hawkins – these will be some of my new friends.  I just want to laugh, in a room full of people I love, because I think laughter is music to God’s ears.  And bonus, I’ve heard a good hard belly-laugh can burn upwards of 100 calories. 

 

  • I’d like to keep working at my job at a psychiatric hospital – because I believe I have been called to serve the marginalized in society.   I feel so honored and privileged to care for these misunderstood people – I’d even be willing to work there for free.  And I now see how the soul begins to die when we stop serving others – which is a much worse death than the physical one. 

 

  • Because of that last one, I think I’ll return to the homeless shelter where I interned last year and start volunteering.  I’ve never felt more alive than when I walked through those doors and breathed in deep the aroma of desperate need colliding with God’s love in action. 

 

  • I want to spend countless afternoons watching the sparkles accumulate on the lake as the sun descends in the sky, and then, because we’re too ensconced to get up and cook a proper meal, we’ll just throw all the food from both of our refrigerators onto the picnic table and feed all the kids left-over chicken wings, string cheese, a head of lettuce and a can of baked beans.  I want to laugh and eat s’mores and drink wine around the campfire until our sides hurt too much from laughing and the mosquitos chase us away. 

 

  • I want to have ice cream for dinner – repeatedly throughout my remaining summers – buying about 20 gallons too many so that we can take all the extra gallons to the trailer-park to spread smiles. 

 

  • I want to spend time at my local nursing home and find out which residents never get any visitors.  And I want to sit with those lovelies and let them talk endlessly about their childhoods, their children and grandchildren, their careers, their legacies – until they run out of stories or break into song with “How Great Thou Art”.  I used to work there – I know how it goes. 

 

  • I want to pull out my memorabilia from high school and college and spend a whole day, or perhaps a whole week-end, with my high-school sweetheart, who both miraculously and graciously married me, and together read through all of our old hand-written love-letters to each other.  And I want to revel in the beauty of 27 shared years.  Twenty-seven.  That’s a pretty big number when you’re talking years. 

 

  • I want to read a ridiculous amount of books.  I know that seems contrary to what I said earlier about investing in others and not myself – but I also believe this truth:  When we live out the life that God destined us to live and we become who He created us to be, He is glorified.  He made me a reader and a writer.  And when I read, I feel His pleasure. 

 

  • I want to plant trees.  Is it just me or have others noticed that the trees are dying?  When we returned from living in Morocco, I was hyper-aware of dead trees everywhere – way more than when we had left 4 years prior.  I think it’s continuing to get worse.  I think I’ll plant at least one tree for every year God gifts me here.  At first, I felt like this one wasn’t an investment into people, but now I think it is.

 

  • I want to hand-write cards expressing: “Thank-you”, “Way-to-go!”, “Congratulations!”, “Thinking of you”, “Praying for you”, “Sorry for your loss”, “Wish you were here”, ‘til my carpal-tunnel screams “No more!” 

 

  • If my lungs will allow, I want to take several trips to Guatemala or Honduras – two countries that are home to many people we know and love.  And on these trips I want to take bunches of people who have never left the USA before, and introduce them to the “real world” and hope and pray that they get it, absorb it, and live differently because of it.  That’s what changed us, anyway, and I’d love to keep paying that forward.  Even though it wrecks you for good. 

 

  • I hope I’ll never watch another reality TV show – perhaps any TV show for that matter.  I don’t find the point in it at all.  Unless, of course, it is “24” with my husband and our two sons and we’re all death-gripping each other’s hands on the couch, or “Downton Abbey” with my two daughters curled up under the same blanket with me. 

 

  • I don’t know, but I think with only 10 years left, I’m going to give up dusting and vacuuming.  Those two things seem equally pointless and just time-suckers – time better spent with people.  I need to be about making a point.  I bet they don’t dust and vacuum in the Congo.  I’m contemplating throwing out cleaning toilets as well – but more undecided on that one.  I still have nightmares about the toilets at Paul’s college residence after just ONE year with no cleaning… I swear I got bit in the butt once by some kind of toilet vermin. 

 

  • And I’m going to write that stinkin’ book.  It doesn’t matter if it is ever published or even gets read for that matter, it just matters that our story gets told.  We all have a story and they are all too good to not be told.  The five reasons this bucket list entry is for others and not for me are named:  Paul, Andy, Josiah, Grace and Yulisa. 

 

  • In fact, I’m going to write everything down on this journey.  And I’m going to share it openly not caring what some negative people may say anymore.  I’m done with letting words hurt me, and I just don’t have time for that anymore.  The only way I can be hurt now is if someone would steal the set of lungs that I might need for a transplant. 

 

  • And then, hopefully, if I still have energy left after all that, I want to devote serious time, money, and creativity in bringing awareness to LAM.  Because it’s so rare, it doesn’t receive the research monies a terminal illness deserves.  It still has no cure, and it is silently killing many women in the prime of their lives with average age of diagnosis around 35.  I cannot possibly understand the mercies of our God – but mercifully, He has allowed me to live this long, well into my 40’s; and hopefully, He grants me another 10 years.  But many other women with LAM do not live long enough to even see their first grey hair or their children graduate from high school.   I want to tell everyone I know about LAM, and trust that somehow, somewhere, someone out there exists who will discover the cure.