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 point
to 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.
