While You Were Sleeping

~ Henry ~ 1 Comment
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Photography courtesy of the amazing Kimbry Studios.

Dear Mackenzie,

You’re sleeping right now; the sounds of the air purifier and your heated breathing machine filling the otherwise silent morning air. Nothing else seems to exist when you’re asleep. Nothing but quiet — a brief respite from the clang of reality. Like I’m a mile underwater, looking up without the mildest indication of the hurricane that boils on the ocean surface. Between the tanks and the tubes and the chargers and distilled water and O2 regulators and blood oximeters and pills and appointments and disappointments, it’s easy to forget the peace that silently flows beneath and above it all, sometimes cruelly out of reach. And for a time that won’t last long enough, here is peace: you, with your hand on my forearm, softly sleeping through the ticking of my keyboard.

Sleep on, my love; remembering the sleepless nights behind us and the ones we’ve yet to share, knowing you can reach out, at any point of any night, and find me there. I’ve already passed the crossroad in my life of weighing the two worlds before me; life with you and life without you. You’re my path, not so much by choice, but as a matter of survival. For the love you’ve built around me is a house only you can haunt.

Sleep on, my love; keeping at bay our unvoiced wish to banish these dark days, rather than welcome their refinement. For sadness, like rage or diffidence, is just another way to love each other, providing deeper shades to paint with.

Sleep on, my love; forgetting the fear, the injustice, the stains these moments are leaving. Because I can’t imagine a life that is walked with offense producing anything but. Because this thing in our life is an opportunity that too many have let rot. And we can’t do that, because someone else, maybe not too far off, will go through this too and will want to know the why’s and the how’s and the what now’s that we’re only starting to answer for ourselves. We should forget whatever we feel this world or its people may owe us, because resentment is a backyard bone best left buried, and a sense of what’s owed is perhaps merely runoff from a lack of giving.

Sleep on, my love, and don’t fear waking. There are more than just hurricanes on this side of it all. There are answers slowly forming, lives your story is touching, hope you’re helping grow in the world around you. There are trips to the beach to be had and half-read books to someday finish, recipes waiting to be perfected and lazy Wednesday afternoons longing to be spent wandering the endless aisles of Target. There are more good times ahead. There are more bad times too. But there’s an armor I see forming around you, a chainmail of all the hundreds of times your heart broke and forged back together, only to be found running toward the next fight. You’re the strength from which I draw, for relief and for courage (how dare I be so afraid, when you’re so strong?). And it all waits for you, as you warmly sleep; the wars and peacetime of our inevitable landscape. But for now…

…sleep on, my love.

I’ll keep watch.

I’ll keep time.

I’ll keep it all,

Until you wake.

Love, H

Bra-less and Unpaid

~ Mackenzie Madsen ~ 7 Comments
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My Work Photo (Before)

Friday was my last day of work. And I’m supposed to be happy about this…right? I mean, anyone that’s ever had a full-time job understands there are moments when you’d rather pull your eyelashes out one-by-one than go to work. Maybe your job is in the eyelash business and you’d rather not think about eyelashes all together. But that’s beside the point.  What I’m trying to say is…on my last day of work, I was sad.

Like, really sad.

Maybe if I were quitting to travel the world, that would be one thing. And I may or may not have already done that.  But, there’s something about quitting because you’re sick and it’s time to stay home and chill out because you have LUNG DISEASE! that makes it a real bummer.

But seriously, working had been so great for me through all of this. I loved my job. I loved my coworkers. I’d get up in the morning. Put pants on. Put lipstick on. And get my butt out the door. It was nice staying busy without having to think about lungs or needing new ones. Not to mention, Henry and I would carpool together to Salt Lake and that usually involved 45 minutes each way of Beyonce lip sync battles, NPR podcasts, and how-many-chicken-nuggets-can-you-fit-into-your-mouth-at-once competitions. You  know, “quality time” (we’re going on a diet).

Day one of kept-woman status, was spent with my sister on her birthday. One part, the funnest day ever, another part anxious ball of nerves.  I was in charge of keeping her surprise party a secret. A feat, that if you knew me, was a sheer miracle in and of itself. I used five tanks of oxygen that day…Five! (Picture scuba-diving on land).

Day two, I was a cleaning machine. Pick up clothes. nap. Laundry. nap. Fold clothes. Lay down. Put clothes away. sit. Organize book collection. sit.  Make bed. Lay in made bed. Not to mention I got winded doing the dumbest things.  I picked up a bundle of bobby pins off the floor, which were the last four to my 5,000 piece collection (where the others have gone, I’ll never know), and I had to compose myself for a few moments afterwards. All in a days work.

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(After)

I’m currently in the middle of day 3. I’m still in my jammies and bra-less, drinking orange cream soda. I think I spent a good 40 minutes sitting on the couch, staring out the window. I did manage to curl my hair. It’s 2 in the afternoon. I guess I’m still trying to get the hang of this.

I know what some of you are thinking…this all sounds like a dream.  And maybe it is. But I’ve learned from experience that time off is fun for about the first couple weeks; then the cabin fever sets in and the little voices start talking. So I just need to stay productive, or else I have too much time to, well, not be.  I’ve decided to make a list of all the things I plan on doing while at home. Just a few things to keep me motivated. P.S. They can’t involve a lot of breathing.

Here it goes:

  1. Crochet socks for my feet and hands…this house is freezing!
  2. Eat & Cook healthy (who am I kidding)/ semi-healthy foods
  3. Exercise: AKA Slow walks around the block (Note to Mackenzie: spending your morning watching Instagram yoga pose videos doesn’t count. How do they bend that way?!? HOW!?)
  4. Learn the romantic languages: Italian, French, Spanish, Pig Latin, Klingon
  5. Master different Pinterest hairstyles: The Double-Dutch Braided Bun and Braided Side Pony, The Half-Up faux hawk, the I’m-trying-but-I’m-not-trying sporty looks for girls who can’t even, and everything in the “40 Adorable Hippie Hairstyles to Make You Look Cool” and “Deeply sensuous hairstyles” tutorials.
  6. Improve piano skills and give Lang Lang a run for his Yuan.
  7. Color code Henry’s sock drawer and organize his chambray shirt collection
  8. Decode the Voynich Manuscript
  9. I’m gonna read so many books that, in a few weeks, John Travolta in Phenomenon, will have nothing on me. I’ll be growing bus-sized cucumbers, turning pig manuer into fuel and moving pencils with my mind!

Just you wait.  This period of my life will prove to be transformative. Where I once dreamed of taking time for myself, I now have that time in abundance. I get to go to work…on myself. Improve. Grow. Learn. And maybe finally finish the remaining seasons of Gilmore Girls. Cuz that’s important…right?

Hunting Grounds

~ Henry ~ 7 Comments
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Photo by Evelyn Eslava

Dear Mackenzie,

In the hour it took me to start writing this, six people have been added to the national waiting list for organ donation. And by the end of today, 22 people on that list will die, having waited too long for what would have been a second chance at a one-chance life. Those numbers, I suppose, aren’t as sobering when considering the lives taken daily by way of car accidents, strokes, heart attacks, or even depression-related deaths.

But there’s something about slowly being chased by death that gives it a certain tinge. Or, at most, I can only pretend to imagine. Like that dream when you’re running from something as fast as you can only to look down to see you’re stuck in the same spot, motionless. In a construed way, dealing secondhand with this hunt provides a sense of wonder and propulsion to life. How often do I consider the wider impact of my daily decisions? The jobs I have, the words I say, the things I buy, the promptings I ignore. And how often do I walk and talk my way through each day, unaware of my tangible connection to all those around me whom I scarcely acknowledge, if at all?

I bought a bottle of water and a pack of gum yesterday and when I lifted my head to take my change from the cashier, I saw your eyes in hers; the left one slightly smaller than the right.

Walking down the street, I overheard a series of laughs from a woman which echoed yours; light and free and above the noise.

And everywhere else I seem to go, I catch glimpses of your cadence or your phrases or long neck or seeping kindness in anyone, everyone I see.

Once braindead, a registered donor’s organs have about a four-hour window of usability. That means we’re most likely living near or among the person whose lungs will soon be yours. At the very least, he or she is most likely less than a three-hour drive away. He or she could be any one of those strangers I witness on a daily basis in whom bits of you sing; the cashier or the laughing lady.

He or she is most likely between the age of 20 and 50 years-old. He or she is most likely a husband and father or a wife and mother. He or she won’t see it coming. He or she will have made no preparations. He or she will most likely be sad to leave a life and loved ones behind. But he or she will hopefully come to know someday that somewhere, maybe a three-hour drive away, is a daughter, sister, niece, cousin and wife of her own who will carry on his or her breath with the added measure of life they’ve gifted her.

And maybe that teaches us another lesson that would probably otherwise pass us by; that we’re more one than we realize. In death is life and in life is death and on and on and on. And composed in every breath we breathe is everything and everyone who once was, now is, and will be. And by standing up and taking part in that eternal round, we etch parts of ourselves in the greater human story, parts of ourselves in the shading trees and woolen caps and crooked smiles of who knows how many. It assures parts of you will remain in the eternal parts of me.

Maybe, in that larger context, there are no seams between a life and another life, aside from the ones we create. Everyone’s in this breathless chase, altogether and all at once. We’re all beggars for one more day; loose in a jungle of vanity and sorrow and pleasure and culture and deadlines. We’re all one string of events and of happenchance and of grand design that leads to something I can’t yet comprehend; a place of no end because there is no beginning. And maybe that’s the point.

Whichever end of this journey we find ourselves, let us not forget the marrow from which we all stem. Let us not find ourselves on the other side of life-or-death whittling away the constant gift of our unnumbered tomorrows.  Let us, however, take your new breath and our new life and live the brash way we were intended, giving and doing and loving with dissipated fear and undetectable pride in an endless and seamless round, forgetting our place in the hunt, and drinking in, with furious abandon, the wild, wild air.

Love, H

Lung for a lung

~ Mackenzie Madsen ~ 7 Comments

IMG_3375You know you go to the hospital a lot when you have a favorite volunteer lounge pianist.  My favorite is the 110 year-old, white haired man who plays jazz without any sheet music to reference.  He can be found hunched over, eyes closed, tickling the ivories next to the Starbucks in the lobby of the hospital. I passed him walking to my appointment last Thursday and it was a gentle comfort to me in spite of the nerves I felt.

I always get a little nervous for these appointments.  Let’s face it, the whole week leading up to it, I’m usually anxiety-ridden. Not for any particular reason.  Mostly, because these appointments are another reminder that I actually have a life-threatening disease (a fact that, despite the breathlessness and oxygen tubes across my face, I often forget). The unknown is always a scary thing.  You’ve heard the phrase, the devil you know is better than the devil you don’t. Well…there’re a lot of little devils living in my lungs right now and we’ve become rather close.  First name basis.  I don’t have time to make any more devil friends. I’ve learned that sometimes the less I know, the better, or rather, the easier it is.

But, I didn’t sign up for this life knowing it would or should be easy. Sir Francis Bacon said, “Knowledge is power!” (and I better listen to anyone with the word “Bacon” in their name).  So for every appointment, I put my big girl panties on, ask the eagle to help my feet to fly (maybe I just watched Pocahontas), and I show up ready to face the facts.

My doctors determined that I have reached the point where various “band aid” treatments are not improving or maintaining my health and it’s time to meet with the lung transplant team.

Henry: “So…we’re at that point?”

Me:”I didn’t think it would be happening this soon.”

Doc: “We only have your past 6 months to go off of as far as timeline goes.  6 months ago you didn’t need oxygen.  Today you’re at 6+ liters.  We’ve tried everything we know and there hasn’t been any improvement. If this follows the same progression timeline as the past 6 months, then 6 months from now, things could be looking a lot worse.  It’s time we start having these conversations.”

I am not currently on a transplant list. Why, you ask? Well, because these sort of things are not taken lightly. What doctors typically try to do is keep you with your God-given lungs as long as possible, because while Pulmonary Hypertension is one thing, lung transplants are another “devil” all together.

Lung transplants are the less popular, ugly step-sister of say the heart or kidney transplant.  2 in 10 people die within the first year of transplantation and only 50% make it 5 years. There are a lot of reasons for this, but the main ones are rejection and infection. Our lungs are constantly in contact with the outside world, sampling the atmosphere with every breath we take.  The immune suppressant drugs required post-op to prevent your body from rejection, makes it really easy to get sick.  God-given lungs are normally our first line of defense and act as a barrier to such illnesses. With transplant lungs, a tiny cold to an otherwise healthy person can be fatal for a transplant recipient; especially when your lungs are a foreign object your body is trying to reject.

Yeah. So. Like. Yikes, right?  That all sounds really scary.  And yes, there’s plenty to be scared about.  But there’s also hope.  A new pair of lungs could mean a new life for me. And there are a select few, a small percentage, who live decades longer with their new lungs. I can hear Larry from Dumb and Dumber, “So, you’re tellin’ me there’s a chance?!” I could have children.  I could dream.  I could dance.  I could sing. I could be a wife, mother, and general life-liver. I would probably just go through a lot more bottles of hand sanitizer, and face masks, and vegetables.

When your only other option is to wait to die, it would seem the answer is clear. However, I know that making the decision to transplant is a life-altering decision. And it still wouldn’t guarantee a grey-haired, sit in your rocker, watch your grandchildren play, life. Crazy.  Even as I’m writing this, I’m thinking…”this is crazy.” And yes, I’m scared and my heart is heavy and I think about the person who doesn’t know that they are going to die so that I can survive, every day.  As my transplant doctor said this morning, “you are waiting for someone else’s tragedy so you can live.” I can’t even begin to describe how humbling that is.  It’s like a literal manifestation of Christ’s Atonement.  Without that gift, my life would eventually come to an end. And it would happen sooner rather than later.

I have an important decision ahead of me. What brings me comfort? Knowing God is in control. He is! There is absolutely nothing about this that puts me in the drivers seat. There’s is nothing I could have done to prevent this disease and there is nothing I can do to keep it from claiming me.  But if God feels I still have work to do, He will provide the gift of life for me and I will go on, to live another day, to fight another fight.  And that’s it.  All He asks is that I surrender to His will and have faith in His plan for me. Because it’s probably better than the plan I have for myself.  And maybe that 110 year-old jazz pianist is actually a guardian angel sent to make me smile and assure me, “The best is yet to come and babe, won’t it be fine?”

My Mother’s Keeper

~ Henry ~ 8 Comments

Mothers day One year old

Dear Mackenzie,

I recently read this story. It’s a sad one, about a young couple and their newborn son, born with brain cancer and given only a handful of months to live. The story starts with a scene told by the Mother. Sometime after he was born, her young son wasn’t able to hold down any fluids and became severely dehydrated. He was hospitalized for about the thousandth time, too crippled by pain to stop crying long enough to sleep, and too taxed to take on any added medicine. She rocked her son back and forth and rubbed his chest and added water droplets to his lips and bathed him in warm water but nothing seemed to soothe him. He simply cried. And when his voice was dry and hollow and barely audible over his wincing face, he cried some more. And when his tears ran dry and there was nothing left to spill, he cried some more. And his mother, alone with him in his hospital room, beyond the immediate help of a staff or family member, searched and grasped for any strand of remedy. But without any other thing to try, without any other person to call out to, without any other prayer to pray, the pleas of her helpless child washed over and through her. Unable and unaided, she dropped her head and wailed out what un-bellowed grief was left inside her and simply waited for the weight of it all to crush her.

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I’m not a parent and can’t yet understand such helpless, singlehanded anguish. But I think I may have witnessed some things close to it. There was that time I heard it in the voice of a young widow. I was at the funeral and was probably too young to know what it all meant, but that sound she made left scars on my memory. There was that time I saw it on the terror-slurred face of my post-stroke mother, unable to move or scream out from beneath her darkness. Reaching out to me, her son; helpless, hopeless, voiceless. And I saw it in your mother’s eyes the day she was told her oldest child, the daughter she’d fought so hard to keep alive as a premature baby, was about to begin the wildest, most frightening ride of her young life. And I saw it in her eyes when she came with us to your pulmonary function tests and could barely stand seeing you shudder with difficulty to get through each puff; seeing firsthand the cold grip this disease was tightening around you. And I’ve continued to see it in her eyes when, assault after assault, our hearts have been called on to endure more and more and then mercilessly more. As if the untold amount of stolen tomorrows weren’t enough.

It’s a look maybe only a mother’s eyes can produce; one that sees the universe in the face of her child and, in it, stores all the praise and hope of her own unfinished business, her own unmet triumphs. Perhaps it’s in our children and in our children’s children that we live forever, that we’re made perfect. But whatever the case, it’s terrible to encounter; that look.

Those are also the same eyes I glanced into on the day I proposed to you at the Metropolitan Museum of Art on that rainy New York Sunday. She and I had schemed the whole thing, weeks in advance, and when the day finally came I saw nothing but sheer acceptance and appreciation in her eyes. And that lifted a 2,000 pound load off my shoulders because your mom is the kind of woman every man wants approval from, especially the man wanting to marry one of her two amazing daughters.

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They’re the eyes that cried with us on countless nights as we used what little wisdom we had to piece together some sort of meaning when it came to love and fear and relationships.

They’re the eyes that were bloodshot and puffy after a sleepless night spent in a packed hotel room filled with my snoring that I really need to get checked out once and for all.

And they’re the eyes that saw the happiest day of my life; the day she gave up a daughter and the day I gained an entire family. When we all gathered in a single room and there was nothing but light and peace. And her eyes danced between you and me, and she saw us both as one; one of a kind and one of her own.

Hard as it is, I’m glad to have seen the spectrum of your life operate through your mother’s eyes.

Otherwise, it all wouldn’t mean as much to me without knowing how close you were to not surviving your birth. A young mother yearning to reach and hold and comfort her two and a half pound baby, yearning to then reach into her baby’s 28 year-old chest and coax away the monster shortening her breath.

I’m privileged to know the eyes that saw your feet plant their first steps, your lips shape their first words, your tongue taste its first snowflake.

Otherwise, It’d be hard to appreciate the magic through which you see the world; the problems that always have solutions, the villains who always deserve kindness, the fallen sparrow who will always have a song and a prayer, and the redeeming good that can always be done no matter how tired, how broke, or how much you may need the good deed yourself.

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It’s an honor to know the eyes that have seen you wade and struggle through bad denim outfits, self-centered boyfriends, unfortunate bouts of Bell’s palsy, mean high school girls and lost retainers.

Otherwise, it’d be hard to imagine what I would make of the woman who constantly forgives me, who constantly forces me to forgive myself, and who constantly pushes me to do the same for others, for everyone.

And it’s with gratitude that I am able to look into the eyes of the woman who gave you life and see the two pound baby who would then become the perpetually happy child who would then become the consciously kind young lady who would then become the dauntless woman who would come to pump new blood into my heart, spring new vision into my sight, and breathe new life into my lungs at the beginning of every day.

Otherwise, how else would I have found certain corners of myself? How would I have come to see the world in all its light or the people in all their goodness? How would I be able to continually collect the strength needed to lift my head, lift my spirit, and lift my voice to the heavens with thanks for the good and thanks for the bad and thanks for everything in between?

If ever I need to find the answers, your mother’s eyes are where I’ll find them. She keeps you in there. The years and years and sad times and Christmases and school plays and divorce and new homes and new lives and old friends and setbacks and fallbacks and Fall breaks and everything else I’ve missed but yearn to know. And at times, mostly recently, there’s a pain that pushes it all to the surface, leaving your mother fighting the tears back, lest bits of you come flowing out with them.

Let them flow, Jen. Let them flow out and into me. Trust a portion of them to my safeguarding. And shoulder to shoulder, we’ll keep her alive forever.

Love, H

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