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)

You’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.”

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.

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.

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?

You 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?”

I don’t remember meeting Henry for the first time.  It’s true.  And I feel really bad about it. Shame on me for not having a first memory! Because he really really deserves a great first memory. Time didn’t stop. Birds didn’t sing. Wind didn’t blow in his hair like a fan on a Telenovela series.  And no…I don’t recall fainting, forgetting my name or suggesting we play Yahtzee (another story altogether).

I always thought when I met the man that I would eventually marry, that I would feel something different. What do I mean by different? I don’t really know..something having to do with talking woodland creatures, wind, and heavenly hosts. I later learned that whatever I thought I knew about love and fairy tales was a bunch of crap.  It really was.  Buckets of it. Fact of the matter is, I knew nothing about love, twue wuuuuv. I knew nothing until I met Henry. And he taught me, not just the perfect way to apply hot sauce to tacos, but how to love.  And not just how to love him, but how to love myself.

I didn’t know this at the time we first met, but Henry would change me.  I know what you’re thinking, and no, you don’t need to start calling me Chaz or Elphaba.  What I’m trying to say is, I now shave my legs more often.  And I see the world through the eyes of his love (thank you Melissa Manchester). Henry is my split-soul, my twin flame, my spirit animal, my space monkey (I think that’s maybe something else). We were MFEO (hopefully my Sleepless in Seattle reference isn’t lost on anyone). And our love actually started small.

He would start by making me laugh. a lot.  We would say the EXACT SAME THINGS at the EXACT SAME TIME. (Like today, when we said “Dairy Queen” in unison out of the blue).  I would fall in love with his brown skin and freckles and the fact that he could talk about his favorite Bachelorette villain one second and the use of Iambic pentameter in Shakespearean sonnets the next.  He would fascinate me (that lip curl…).

And soon he would play French music all the while Julia Child-ing beef bourguignon (I love how he whips a towel over his shoulder when he cooks). He would bring me flowers wrapped in paper.  We would sing in the car (He does Renee Flemming better than Renee Flemming). He would put his hand on the small of my back when we’d walk into a crowded room.  He would laugh at my jokes.  He would love my family as his own. He would hold my cold hand in his warm one and pull the joined set over his chest as if making an oath, an oath that no matter how tough things got, he would stay.

And later he would marry me.  He would help me wash my hair when I got too out of breath to do so on my own. He would help me get out of bed when I didn’t have the strength or will. He would carry my oxygen tank for me so I wouldn’t be uncomfortable.  He would celebrate with me the tiny victories, and cry with me at our tiny losses. He would rub sore muscles and repeat to me what I so often forget to do these days, “breathe…in and out…slow and steady. Everything’s going to be ok.”

I didn’t know all this then.  But since I’m imparting life lessons that I’ve learned with the perspective that I didn’t ask for, here’s this: 1. Love conquers all. 2. Pizza and hot dogs in one night is a mistake. 3. There are no mistakes in life.  4. You can never have too many ketchup cups. And 5. if laughter truly is the best medicine, then I know for a fact that Henry can heal me.

Anne of Green Gables said it best, “I don’t want sunbursts or marble halls, I just want you.” While I may never replace his love for Michelle Kwan or Rafa Nadal, I know this for sure: I don’t exist apart from us, for he is the greatest part of me. And I don’t need to live happily ever after, just as long as I get to live with him.

Happy Birthday Henry, my reason for living.