Month: April 2016

The Friends You Keep

~ Henry ~ 2 Comments

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Dear Mackenzie,

Before you, my group of friends mainly consisted of inappropriate bus drivers and single-mother cafeteria ladies who find communicative men in this day-and-age fabulously refreshing. Oh, and my mom. (Don’t laugh, you’re the one who married me). But when I met you and slowly began to melt my life into yours, I discovered some pretty amazing people; people who call you on your birthday (who remember your birthday), who come to support you and your family at performances, who give hand-written notes for no real reason, who hook you up with cool perks, and who run to your aide without ever being asked. All in all, your people are pretty dope. As are mine. And the best part about it? Your friends and my friends are now our friends.

That was part of the lure and magic I first saw in you; the immediate and lasting affect you have on everyone you meet. Your goodness is made evident every day in the classmates, co-workers, church friends, former roommates, and perfect strangers who seek you out to both comfort and be comforted. You’re an emotional Mother Teresa to an entire world of people, able and willing to get in the pits with your friends and, without judgement or objective, lift them up with your example and infectious optimism. Don’t believe me? Refer to the list below. They can all vouch for your bomb-tastic-ness. Oh and don’t forget, we have that thing with Alyssa and Gideon on Thursday.

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Your mom, sister and I were nearly hospitalized after this blessed event.

Married Friends

Yeah, so I start here because these were the friends we used to resent until we became them. Mostly because we HATED driving to our respective apartments at the end of the night, whereas our married friends would just fall asleep wherever they were and wouldn’t get honor-coded when they woke up without pants. For some reason, those were the biggest advantages of married life to me: no end-of-night commute and no pants.

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I’ve met Megan (behind me) twice. Both times she was pregnant. Both times with different babies. Rock on.

Friends With Kids

Yes, I think your son’s tiger-print onesie is adorable. No, I will not check his diaper to confirm whether or not his poop consistency is “iffy”. Not judging here, the closest I’ve come to parenting was that one time I helped a kid who fell into a puddle and then immediately told me to keep my “soft, Turkish hands” to myself. Whoever his parent are, they’re obviously winning people – people we would be friends with.

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Nomad on the left, Crossfit beast on the right

Nomad Friends

Kristen: Hey, what’re you up to?

Me: I’m lost in Ikea and there are no windows. You?

Kristen: I’m at a cafe in Morocco and have a few minutes before my camel gets here.

Me: Swedish meatball, say what?

(actual conversation)

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Don’t let her fool you, Rachel is LOADED.

Rich Friends

Rich Friend: Hey, we’re all going to Aspen this weekend. Come!

Me: I don’t have any skis.

Rich Friend: Uh, buy some!

Me: Dude, I steal toilet paper from the testing center.

(actual conversation)

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So much righteousness.

That Friend Who Won’t See Rated R Movies

“There is a moral difference between Braveheart and The Wolf of Wall Street.” This is the kind of conversation I’ll have for two hours with “that friend” before eventually giving up and watching Fern Gully 3. And yes, I know how you feel about rated R movies, but I distinctly remember you watching The Pianist and loving it! Spirit of the law, Kenz. Spirit of the law.

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Mara (next to Jesus in a boat) is having a mild stroke.

That Friend You Call to Go See Rated R Movies

This friend understands the spirit of the law.

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No one hikes on their day off for fun. Except the Sherman’s.

Overly Athletic Friends

Fun and exercise are two different things.

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Meanwhile, I’m somewhere buying a bed skirt.

Granola friends

My idea of camping is staying at a hotel that’s a little too close to the airport. Did the cultural generation before me build homes and plow fields with children on their backs? Sure did. Do I want to? Sure don’t! But, I will say, that you have a full gaggle of earthy friends that could be dropped in the middle of the African plains and somehow build a shopping mall. And I respect that. Even more impressive, you have a friend who survived three days of my colorful whining on that trip to Havasupai. Shout out to Willie.

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I resent not being in this picture.

Blue Moon Friends

This is the friend we see every other six months, but when we do meet up we get kicked out of a Chick-fil-a for laughing too hard. And after four hours of eating and crying and laughing and stories told and retold, we’re filled…hopefully enough to last another long absence.

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Who’s that chick in the middle?

The “Why Are We Friends?” Friends

There are those friends we’ve had for 10 years but don’t really know what keeps you as friends besides a shared, distinct moment. Like that cafeteria water fight you both started in junior high.You both have different taste in music and movies, you don’t like each other’s “other friends”, and you both have completely different takes on Trump. But that friend was there when I went through that frosted tips phase in 8th grade, when my parents were going through that thing that almost broke them up, when I was lost in college, when I was lost in my first real job, when I was lost in my first serious relationship. Sometimes it’s simply the shared time that keeps us as friends. And throughout that time, they become capsules of the many “you’s” you were before you became “you”. That’s a good enough reason.

The Ride or Die Friends

Life seems to happen in waves. Sometimes they’re soft waves, lapping against your feet at sunset. Other times, they’re cataclysmic waves, uprooting trees and homes and lives. I’ve found that there is a priceless collection of people who are first to the scene of wreckage; despite the second wave sure to come that may take them too, despite the personal price of their rescue, and despite the waves in their own lives. These are the friends who come through, because it’s a short life; full of responsibility and surprises and too little time and too many unknowns. And they know that. And they ride the waves with you. And life is good.

Love, H

To My Wife’s Organ Donor

~ Henry ~ 5 Comments

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Dear Friend,

The call could come at any time. During dinner, while the clothes are drying, at a Walmart checkout line, 45 minutes into a movie, in the middle of rush hour traffic or in the middle of the night; restlessly sleeping as we’ve now become accustomed. There’s no telling where or how we’ll be, which is an impossible state to find comfort in. But then again, this isn’t a game of comfort or convenience or calculations. I’m sure the events will come as much of a surprise to you and your world as it will to us and ours. For all we know, you’ll also be sitting at the dinner table for Sunday leftovers or folding three loads of laundry or picking up your kids from school or coming home from spring break spent at your in-law’s cabin in Tahoe. The call could come at any time and under any circumstance, bringing us together in a clash of events that will forever hence be our eternal kinship. You’re going to give my wife your lungs and a second life. And all we’ll know of you is that you didn’t see death coming.

I guess I should start by telling you a little bit about Mackenzie. She is the eldest of two gentle brothers and one amazing sister who all love her like the mother she sometimes is to them. She loves the Fall more than most things and is sensitive to foul language. Babies and puppies make her cry, fart jokes make her laugh, and just about any song on the radio will make her sing. Her diet mainly consists of cold cereal and things you put syrup on, but she can bake almost anything from scratch and have it come out perfect. She isn’t perfect herself, mind you, but she’d be the first one to tell you that. She’d also be the first one to laugh at your failed attempt at a joke. She’s kind that way. She’d be the first one to hold your hand and cry with you, the first one to stand up for you to a bully and the first one to look on the bright side of an otherwise dark day. She’s the first to forgive me, the first to forget my failings, and is always the first responder to my many rescues. And she’s the last woman I ever plan to love.

After about a year of progressive breathing problems, Mackenzie was diagnosed with a terminal lung disease (a rare form of pulmonary hypertension) in August of last year. She was 28. We were married only a few weeks, still wearing the tans from our honeymoon. What followed was a whirlwind of appointments, tests, insurance claims, insurance nightmares, unopened medical bills, prayers, pleadings, fights, compromises and tears, lots of tears. And now, barring other “what if’s” still in the works, we’re anticipating this last portion of our pre-transplant journey in our near future; the point where our stories meet.

Yes, some distance in the possibly close future, our worlds will both shake; yours with tragedy, ours with joy. Somewhere you sit, unaware that, while your breaths go uncounted, hers do – waiting for your relief. Somewhere you sit, hopefully among your loved ones, sharing the relative ease that comes with disease-free living. Somewhere you sit, going through your inbox, unaware of this letter being written to you that I so much want you to read but never will. Because by the time we know your name, know your story and meet your family, it’ll be long passed the possibility of meeting you. But rest in peace and rest assured. Your untimely ending is to be our beginning of a wild future.

In the first days following your donation, my wife will be able to take in her first unassisted, deep breath –  something she hasn’t done for a long time now. She’ll be able to sit up, walk, and dress without being tethered to oxygen. I’ll be able to kiss her lips without feeling tubes on her face. And I imagine she’ll feel whole again, human again.

In the year following, we’ll be able to settle into a life of somewhat normalcy. Maybe we’ll both decide to go to grad school or buy a home or finally take that cliché backpacking trip through Europe. Also in that year following, we anticipate opening the possibility of becoming parents. Exactly what that discussion will be like and what options it will afford us, I don’t know. But it’s an eventuality I’ll fight long and hard for, knowing how deserving Mackenzie is of being a mother, how instinctual her devotion is. And knowing how fiercely single-minded she will be in her love for our children.

In the five or ten or twenty years following, there will be mortgages and dance recitals, root canals and senior proms, flooded basements and maybe even marriage counseling, which I’ll be resistant to at first but later thankful for (because it’ll most likely be my fault anyway). There will be skinned knees, watercolor paintings on refrigerator doors, Christmas Eve traditions, children going off to studies abroad and an altogether full life of intense beauty and complication that will awe us and simultaneously tempt us away from the things that matter most.

And in the thirty  or more years following, when I’ve finally come to terms with my gray hair and love handles, I’ll take Mackenzie’s hand in mine for perhaps the millionth time and, in the silence between us, I’ll hear her breaths pumping through your lungs. And that’s where you’ll always remain, a part of her and a part of us and a part of our children and our families and friends beyond that. Because you will have given my wife what they or I could never give her. I would give her my hands, for she would perform better work with them than I, touch and comfort more lives. I would give her my heart to keep her precious blood flowing in and out of her able limbs, for she would do better with it than I, go farther and serve more. I would give her my own lungs to prolong the sweet words she shares; words without envy, without guile, without pretense or self-purpose. For as hard as I try to speak of things higher and beyond myself, she would form better words with my air than I. Nevertheless, only you, somewhere living and working and breathing, can fulfill what love alone cannot.

And yet, even after all that; after the years and careers and grandchildren and on and on, we too will expire from this world, hopefully leaving behind a legacy as reaching as yours. And when all else is gone, the root of your gift will still ring. Because the things that outlive our bodies are our choices, our love, kindness, charity, and the memories left to our loved ones who will live on and on in our absence. Whoever you are and whatever you’ve been through, we don’t hope for your death any more than I’m sure you don’t hope for hers. But death isn’t the point, is it?

Even if death takes Mackenzie too soon, as it will have already taken you and eventually me, there’s that bit that remains, that ensures all is well. That portion where love and kindness and charity springs, which makes laughter sweet to hear and life too insatiable to merely spectate. That space that will still exist, even after death has made its wash of us; after time and experience has scraped hollow the rest and planted itself triumphant. There will still be that glint of light to carry on the spirit of life brought from death. The leaves that turn from green to gold and gold to brown and, in time, fall to feed the earth; another season and another bloom promised. And on and on and on.

Love, Henry

So, lung transplants ain’t cheap. Click above to send Mackenzie some love, if you’d like.

B Positive

~ Mackenzie Madsen ~ 9 Comments
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Mary Poppins: perfectly imperfect in every way.

Warning: I’m going to be honest with you (and this is for all the future readers of this blog who just found out they have lung disease and basically want to punch a hole in the wall)…

Some days just suck.

There are discouragements. There are set backs. And there is a constant struggle between the life you have and the life you thought you should have.

It’s been a rainy, gloomy week and, for some reason, I’m in a mood…so I apologize for catching anyone off guard here. I can hear my husband saying, “Maybe you shouldn’t be writing right now.” Writing when you’re ‘in a mood’ is like grocery shopping when your hungry. Not a good idea.  But you know what, this is real life. My grandpa used to say, “Do the best you can, that’s bad enough.” Oh Albert, what a way with words.

If there’s one thing I’ve had to come to terms with having this disease, it’s that, control is an illusion.  For someone like me who is a little/big bit of a control freak when it comes to life in general, this is a really REALLY hard concept. We all have expectations that we put on ourselves or that we allow others to place on us and sometimes, we fall short. Or rather, life falls short.

You have a rare lung disease. You will not be able to have children. The medications aren’t helping. The numbers aren’t very good. Lung transplants are merely a trade of diseases. The recovery is unique and unknown. You should probably relocate. Move to the most expensive city in the country. Maybe you should look at this center or that center. You have a rare blood type (b+). You need to get going on this. Hurry up and wait!

Hearing this stuff gets old and sometimes all I want is a vacation from my body.

Truth is:

Some days you’re going to be sad.

Some days you’re going to cry.

Some days you’re going to be angry and you might even take it out on your family, your cute husband or your cat.

No amount of chocolate soothes.

No amount of sunny days distract.

No amount of hot baths, warm fuzzy socks or Netflix Documentaries make it go away

Brene Brown, researcher and vulnerability expert said it best:

“From the time I was a young child through my late thirties, I believed that growing up was about finding certainty and solving the mysteries of life. It seemed to me that the end game was answers and control – especially control over important outcomes and what people think. The formula was pretty clear: Vulnerability is weakness, self worth is based on what you achieve, and accomplishments and acquisitions bring joy and meaning.

“What’s spectacular about my life today, at forty-seven, is finally realizing that the prime of our lives is not about answers – it starts when we finally allow ourselves to soften into the mysteries and live in the questions. For me, the softening came after a long, painful midlife unraveling; fueled by the exhaustion that comes from too much pretending, pleasing, and perfecting.”

In life, you’re going to read a lot of numbers that scare you. People are going to tell you no. You’re heart is going to hurt. You’re going think to yourself, “How am I going to survive this?” Am I going to be ok? What if this and what if that? Why me? There are going to be a hundred reasons why you think you should give up.

And the answer I keep being directed to is…Faith. Faith isn’t having all the answers. It’s believing. It’s hoping. It’s writing your own story. It’s getting out of bed…most days. It’s falling and then picking yourself up again. It’s praying even when you don’t feel like it. It’s learning to forgive yourself and start again. It’s filled with blood, sweat, tears, and fight. It’s surrendering to your unique journey. It’s messy and it’s beautiful and it’s yours for the taking.

And it’s ok. It’s ok not to be ok.

Soften into the mysteries. Live in the questions.

 

No one likes asking for money…so, can I have some money? (if you want)

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A Tale of Two Cities

~ Henry ~ 4 Comments

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Dear Mackenzie,

Well, it only took 12 hours, 3 movies, half an audiobook, two greasy bags of Jack in the Box and a partridge in a pear tree to get us from across the desert to the city by the bay. And barring an unfortunate incident in a Reno men’s room, we made it in one sane piece.

Due to bizarre recent events, San Fran has come a-callin’ as a potential home for us and your future lungs. Yes, fate has been having a blast with us! And now we’re faced with two centers to decide between for your lung transplant. BUT, we don’t have to decide anything this second (although, it’s getting to be about that time now). And as long as we’re in town checking out UCSF’s bomb-tastic program, we might as well squeeze in some time for food and laughs. There’s always time for food and laughs.

Here’s a little pic tour of our events, so far (since I’m never NOT taking pictures, it’s the Asian tourist in me):

“They can take our land (or lungs), but they’ll never take our FREEDOM (or blush)!!!”

If I’ve learned anything after five years, it’s that your version of 15 mins is code for 60 and that 30 mins means “I’ll be done when I’m done, so go turn on my curling iron and eat some Cheetos until then!”

Breakfast of champs

 

No, you’re not taller than me. It’s the angles…

This is us in front of the sweet digs Kevin landed. Is there an artisan kitchen? Yes. Ample closet space? Also yes. Is there a window looking directly onto whoever’s sitting on the toilet? You betcha.

You’re pretty.

I may have started to tear up when I stepped off the elevator and saw the AMAZING view of the city.

Not sure who homeboy on the left is…

Carter wins the award for “successfully guarding all of our purses, including mine.” Such valor.

Don’t adjust your screen. That is the actual size of my head.

Had a lot of time to kill (when we  weren’t eating out of Panda Express containers like a bunch of zombie raccoons), so we took more selfies than is socially acceptable.

Turn your head…and cough.

This is us watching an informational video on the process of lung transplantation. And yes, Meryl Streep was fantastic in it!

The real-life Meredith Grey

I’m starting the Kerry Kumar fan club, transplant coordinator extraordinaire. Just don’t ask her for good places to eat.

My Carter’s cooler than your Carter

Jen: Where do you wanna go, Carter?

Carter: the art museum

Everyone: …

Carter: What?

So, we went to the art museum because we’re those kind of people. And because Carter has the best ideas. And because they had an Oscar de la Renta exhibit. And because I’m proud to know who that is.

The Fault in Our Stars 2: Wheels of Wrath

I forget what we look like in pictures together… Turns out, it looks a bit like I’m a WWE wrestler choking you from behind.

She named him Winslow

A silence fell over the table when these bad boys came. Let’s just say, I heard heavenly harps playing as I ripped into those crabs legs. Did I later find butter behind my ears? I don’t wanna talk about it.

And now here we are…

There’ll be more rounds of testing, more awesome doctors to meet and so many more things to be eaten and later regretted. But until then, life’s a dance!

 

So does a whole world, with all its greatnesses and littlenesses, lie in a twinkling star. And as mere human knowledge can split a ray of light and analyse the manner of its composition, so, sublimer intelligences may read in the feeble shining of this earth of ours, every thought and act, every vice and virtue, of every responsible creature on it.

Charles Dickens, A Tale of Two Cities

Love, H

Perks of Pestilence

~ Mackenzie Madsen ~ 8 Comments

IMG_3430You’ve heard it said that good can come from bad. No, this is not a post on cargo pants, North Korea, or my first kiss.  I’m talking about Lung Disease and all it’s serious perks: The advantages of the disadvantaged. But don’t get too excited. There aren’t a lot. But hey…they’re worth mentioning! And I welcome any judgment on the following:

The Handicapped Parking Pass

There’s a reason this is listed first. You all know the feeling: you’re driving around a packed parking lot, you’re already running late, your children are crying in the backseat and you see that coveted spot just steps from the door. BUT ALAS! it’s a handicapped spot. GOSH! You think, if only I had lung disease. Well, guess who gets to park in your celestial spot…ME! Poor fools.

Electronic Wheelchairs in grocery stores

I remember grocery shopping with my grandma and she’d always get to use those gorgeous electronic carts.  After we’d finished shopping and had dropped off all the groceries at the car, she’d let me “drive” it back to the storefront (she knew me too well). I never dreamed that I would finally get to be the one in the drivers seat. The envy of all the shoppers in all the world! Sure, they move at a glaciers pace, but rest assured, it beats walking. (As a side note, I’ve discovered the best carts are located at the Harmons in Draper, UT or the Costco in Lehi, UT.  Both stores have quality speedsters with nice giddy-up and a fantastic turning radius.)

People/slaves make stair trips for me

Here’s the thing, I hated going up flights of stairs even when I could breathe. I mean, Rocky’s ultimate fitness test was running up those steps to the Philadelphia Museum of Art. Rocky, the greatest fictional fighter of all time, could kill you with one punch, but had to work up to those 72 stone steps. I always played that “Gonna Fly Now” theme song in my head every time I went up a flight of stairs, hoping that my everyman/underdog-rising-to-the-challenge  feeling would overwhelm me to greatness. It never did. Now I finally have an excuse to avoid stairs like the plague. I’m not sad about it. But Henry’s butt is starting to look really firm from all those trips I make him do. See? Even YOU can benefit from me having lung disease.

I get bathed, like I’m sure Cleopatra did or Oprah does

Am I right when I say that all a girl wants is to feel like a kid again? And in my case, like a little baby just in from playing with her friends. In short, my husband bathes me.  We’re talkin’ lathering up my head with shampoo, rinsin’ me out with a cup of water, and wrapping me up in a towel as he helps me step over the ledge of the tub. I’m serious when I say that this practice may have to continue post lung transplant. I have’t approached Henry about this, but I think he secretly enjoys it as much as I do. Want to spice up your love life? I’m telling you…this’ll do it. Just not in the way you think 😉

Cookies. Lots and lots of cookies. 

Guys, I’m Gluten intolerant. Yes. This has proven more difficult for me than lung disease (like, actual tears have been shed over this). So difficult, that I manage to “cheat” and eat Gluten every day. I know! I need to stop! There’s literally no difference in my eating habits from before I was diagnosed to now, except for feeling a lot more guilty about eating  that gluten-injected sin. But there are just the the kindest people at church and friends that I seriously believe work for Santa that bring cookies and brownies and bars and goodies and yummies and home baked, ooey-gooey blessed little morsels. WHAT AM I SUPPOSED TO DO?! I know…give them to my family. Another example of others benefiting from this “trial”.

People smile at me more

I’ve been asked the question, “Do people treat you differently now that you have lung disease?” The answer is this: People smile at me more. A lot more. They’re generally kinder, open more doors for me, and even say “thank you” and “sorry” more! Never in my life have I had so many strangers come up to me, put an arm around me and tell me they’re praying for me. For reals. This happens all the time. Waiters, cashiers, homeless men outside the Fresh Market…you name it. I’m always surprised at how candid and sincere they are. I thought there was this unspoken rule about asking strangers about their ailments. But you know what? I love it. They look me in the eye and say, “God bless you,” and I know they mean it.

I was eating lunch alone in a Thai restaurant one day and as I was leaving, trailing my oxygen tank behind me, a pleasantly old and round construction-worker-grandpa-man just looked up at me over his Pad Nam Prik Pow and smiled the BIGGEST smile. It was the sort of smile a father gives his daughter learning to ride a bike for the first time without training wheels. I swear there was a tear in his eye! It caught me off guard. Everyone should get smiled at like that every day. If everyone were treated like they were having a rough day, I venture to say that this world would be a much better place.

Kids stare at me…and they are NOT shy about it

There’s something we can all learn from the innocence of a child.  Staring at strange people is not one of them. But I have to say, it cracks me up whenever a little tyke decides that those plastic tubes coming out of my nose are not supposed to be there, and by golly, they’re gonna figure out what the heck is going on! Sometimes, they’ll just straight up ask, with one eyebrow raised,”Hey, what’re you wearing?” “Why you got tubes on your face?” “What’s wrong with you?.” I’m always happy to explain. The honesty is a breath of fresh air. And that’s exactly what I need these days.

I get out of things I don’t want to do

You need a babysitter for your 3 kids under the age of 4? You need one more member for your Spartan race team? You need a witness at your dog’s christening? Oh sorry, I can’t…I have lung disease.

I get to end every epic story about my life with…”and then I got PVOD”

Nuff said

I’m learning about God and His love

Joking aside, this disease has proven to be the best thing that has ever happened to me. In the midst of all my struggle, one of the greatest lessons I have learned is that there is struggle all around us.  I see it in every face I see. No one is immune. We all have our challenges. But there is a sweet sort of poetic beauty about it, almost sacred in nature.

A couple months ago, I went to the gym for the first time in a loooong time. I was feeling a little frustrated about my limitations, but feeling good about my effort none the less. A woman who noticed my oxygen tank (not your typical gym accessory) came up to me and politely asked what I had. When I told her about my disease, she informed me that she had been battling breast cancer ( I later learned that she was diagnosed when she was pregnant with her 5th child). I was shocked! She was young and pretty…and couldn’t possibly have been dealt that card. We talked for a minute and snapped a quick pic and went our separate ways.  She wrote about our meeting, “Sickies unite! She’s fighting lung disease and gettin’ it done! I know it may sound weird but I love meeting other ‘sick’ people. They strengthen me and make me happy to be in a community of people trying to live a better life.”

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Me & Stephanie Partridge

THESE are the kind of people I get to meet. These are the kind of people that surround you and me. But most importantly, these are the kind of people we are. You are. I am. It’s like we are all diamonds in a dark room.  Our trials shine a spotlight on us and give us an opportunity to really sparkle. We are stronger than we think we are. We are fighters. We are believers. Ever faithful. We have hope. We have courage. We have God. And with God, “…all things are possible” – Matthew 19:26.