Sheep are known to follow their leader – the CLEAR leader. Even blindly, without any understanding of where they are being led and why, sheep will follow their leader. Likewise, the most important goal in my life is to follow my leader, Jesus, wherever and into whatever He leads me. I want to have as much faith as my sheep-friends, so that I will follow Jesus blindly, even when I don’t understand where He is leading me.
Sheep have such incredibly strong peripheral vision, they can actually see behind themselves without turning their heads. If I am living my life as fully engaged as possible, I need to be able to learn from all that is behind me. I don’t want to live in the past, which would only weigh me down, but I just need to be able to seethe past to know how to navigate the future and prevent recurring mistakes. The ability to see behind ourselves – for both me and my sheep friends – could actually spare us all kinds of pain.
Sheep become stressed when isolated. When I first got my diagnosis, I began wallowing in self-pity and since I knew not a single soul with the same disease, I could not commiserate my misery with anyone. The more I isolated, the more stress and anxiety I experienced. Apparently, sheep have learned that which I still struggle with – we were not meant to do this life alone. We need community. We were created for community. Community is good. And once I reached out to family and friends – my people/my flock – I felt the stress just wash away.
Domestic sheep have a life expectancy of 10 – 12 years, but some live as long as 20. When I first got my LAM diagnosis, I raced to the internet and Googled it. Of course I did – it’s always our first move in the 21st century. I was devastated to discover that most literature cited LAM as having a 10 year prognosis. As I’ve investigated further, many people are currently suggesting the internet data is outdated, and that with earlier detection and possible lung transplant, LAM patients are now very capable of living 20 years or more – just like my sheep buddies. I don’t know how long I’ve already suffered from LAM, it could be I’ve had it for many years already. But because I’m definitely a domestic sheep and not a wild one, I am praying and choosing to believe I could live for at least 20 more years.
Sheep have been used, both in ancient times and in modern religious rituals, as sacrificial animals. Is there any possible way that God Almighty allowed me to get this disease in order to call attention to it, raise awareness, potentially leading someone to find a cure, so that ultimately other young women might live? Or bigger yet, is there any possible way that God Almighty allowed me to get this disease, asking me to glorify Him even in the midst of suffering, so that others might be drawn to HIM? Oh my, even the thought of that takes my breath away.
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.