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.