Emily M. DeArdo

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essays

The Work of Acceptance

books, essays, healthEmily DeArdoComment
Andrew Wyeth, "Christina's World" 

Andrew Wyeth, "Christina's World" 

A lot of people equate "acceptance" with "giving up." 

This is not true. 

I'm in a book club that's reading A Piece of the World and one of the discussion threads that keeps popping up is that the main character, Christina (who was a actual living, breathing person) is too "accepting" of her disability. She doesn't fight back, she doesn't try, she just gives up. 

Now, the book is about Andrew Wyeth's famous painting, Christina's World, and the woman behind it, Christina Olson, who is our narrator. We aren't sure what sort of illness she had, but it was a degenerative one that eventually took away the use of her legs and other parts of her body. 

In the novel, Christina is first fitted with braces to "fix" her legs. The braces are incredibly painful, causing her to bleed and bruise, and they don't help. She stops wearing them. Her parents want her to try a treatment at a hospital, but when she and her father get to the hospital, she refuses to enter. Later in her life, she tries one last time, but is told to "rest". 

But Christina doesn't pity herself; she goes on with life as usual. She doesn't want treatment because she doesn't think they'll work, and she doesn't see her body as something that is  wrong--she's just the way she is. 

Some people in the group, though, are so irritated that she doesn't try. But what is gained from constantly trying to change things, in pursuing futile treatments that may not help? Christina has decided that she doesn't want to keep trying things that are painful and unhelpful. That's her choice, and that's her call. But it doesn't mean she's just flopping over on a couch and saying, "I give up! I shall Lay Here On My Bed For the Rest of My Days!"  

All of us eventually die. All of us will, eventually, have our bodies betray us. Christina's mother says in the book that Christina is just the way God made her. And that's the way I feel, too, about my body. This is just how I am. Christina accepts it, and goes on with her life.  

Now, does that mean I don't try to fix things? Well, no. I wear glasses and got braces and I do love useful medical treatment that keeps me alive. :) But there are also things that I know I won't do, treatments I won't try, and bridges I won't cross, in the name of keeping me alive or "fixing" things.

Some Deaf people will not have cochlear implants. It's actually a big topic in the Deaf Community (or it was--not sure about now?). Do we try to "fix" a disability (being unable to hear), or do we see it as a disability at all? We know how I came down on that side of the question, but again, I wasn't born Deaf. And a CI is a bit different that a situation that really can't be fixed or cured or changed.

Have I given up? No! But I have accepted my body the way it is. I have accepted its limitations and I'm not willing to do things that may or may not "fix" me. 

This isn't giving up--it's just acceptance. And that takes work. It's hard to try to be even-keeled about things like maybe never having my own children. It's taken years of work. But without acceptance, I'd be constantly chasing some ideal of physical perfection that just isn't possible. I'd be wasting money and time. There are other things I'd rather do, honestly, than sit in another doctor's office. 

As Christina's body declined even further, she still tried her best to do her everyday things. To some, her world was very small, because she never lived anywhere but her small town in Maine, and even then, nowhere by her family's farmhouse. She lived with her family all her life. But by saying that her life was less than, or sad, or that she gave up--that denies her any agency in her life. It denies her hard work of acceptance and living her life on her terms. 

Does her life make other people uncomfortable? Well, probably. She didn't use a wheelchair so she dragged herself around, propelling herself by using her arms. This was probably quite...well, odd, for a lot of people. But too bad for them.

I remember when I needed insulin right after transplant, and a friend of mine said "ew!" when I injected myself at the dinner table, in my own house. "You don't have to look," I shot back.  Normally, if I went out to dinner and I was with people, I'd go into the bathroom and inject myself. But in my own house? Nope. Not happening. 

People used to complain about my CF treatments. "When are you going to be done with that?" Like the nebulizer was some sort of icky contraption, or a poisonous animal. "When I'm done."  I had a roommate once who didn't want my machines in the bedroom we shared; she wanted me to put them in the living room of our townhouse. I didn't want to be doing my treatments in front of total strangers, or getting lots of nosy questions about what these machines were and why I needed them. I wasn't some sort of sideshow exhibit. 

I don't need to make my life easier for other people. I need to make my life work for me. And so did Christina. 

 

 

 

 

"It's little, and broken, but still good"

essaysEmily DeArdoComment

(If you're reading this in an email, you might have to click over to see the video clip) 

"It's little, and broken, but still good." 

This is true of so many things. 

We want life to be perfect, don't we? But let's not throw the baby out with the bathwater. 

A life that is still little and broken is still good

Because no one isn't broken. 

Jane Eyre once described herself as poor and little. But Jesus also said that that's precisely who he came for--the poor and the little and the broken. 

So don't disdain that. Don't feel like your life isn't worth it because it's not perfect.

It's still good. 

 

The lie of fine

essaysEmily DeArdo1 Comment

"I'm fine."

"It's fine."

"That's fine."

It's all fine. Isn't it? 

I remember when I was on TV in that splash of incredible good luck, and I remember what someone tweeted: That I was ridiculously happy. The implication being, who is that happy? The follow-up: Surely, she's not really that happy

And no, I'm not. All those people who saw twenty some minutes of my life have missed the lie of "fine." 

How many times do I say I'm fine when really, I'm just a mess? 

I've been a mess this week. And it's only Tuesday.

The physical mess always starts first. Something is almost always breaking in me, and I don't share that, because really, who wants to hear that every day? Who wants to hear about my lack of energy, my long sleep that rivals Aurora's, the way I wake up every morning and look at the clock and wonder how in the world I slept so long. The day's to-do list running away from me before I've even properly opened my eyes, the groan of wasted time. The should haves start. 

How taking the ornaments off the tree and putting them away makes my heart pound faster than it should. Putting away laundry? Seems like running a sprint. 

How I can't shake this feeling that something is wrong, deep in the marrow of me, but there's nothing that's really jumping out and saying "pay attention to me!"

When friends ask how I am, I say "fine." Because who really wants to hear that I'm not? And they have their own burdens--children, houses, finances, pregnancies, unexpected things that burden the back in a way it wasn't burdened, five minutes ago, before the letter was opened or the email addressed. 

"I'm fine."

The uninvited guest, that voice that says "You are broken. You are unlovable. You are worthless." It always rears its head at times like these, and I know it's not true--I know that Christ loves me, that God is always good and I am always loved, that the value of a person isn't in personal perfection, but in the sheer existence of said person. That God made us at all. It doesn't matter how broken I am. Not to God. Not to the people who love me.

But the voice echoes, that voice that started back in the Garden, the voice of, "Who could love such a burden? Who would want such a burden?" Who wants the late-night phone calls with ER rushes and the medical bills that never end and an email that says hearing comes at a cost of $10,000? Who wants to be that constant burden to someone else? No one, right. Because we just want to be "fine." 

The yoke is easy and the burden light. Really? Is it? 

He says it is. And I know that I can trust Him, if I can trust anyone in this world, it's Him. But that Trust, that joy, it's so hard wrung. Why is it so much easier to believe the lie, than the truth? Why is hard to believe that we're loved---that I am loved--but so easy to believe the thoughts that I'm worthless, broken, not worthy. 

Why is it so hard to believe that Christ, that one who doesn't lie to us, and never will--the one who suffered so much to prove His love for us, the one that gives me everything I need--really loves me? Us? 

The battle for joy, for assurance, for love--it hides behind "I'm fine." Or behind those tweets or Facebook messages that people leave that are calling out for attention and affirmation. 

Ann Voskamp, in her latest bible study, says that we all just want to be loved. That's what everything comes down to. She also says that love is being inconvenienced. 

How do you feel loved when the Enemy says that all you are is one big inconvenience? 

Why is truth so much harder to believe than a lie--especially when we know it's a lie? 

I don't know. 

For all the ridiculously happy moments, there are an equal amount of moments in the dark where the only prayers are the ones from the Psalms that cry of desolation. The words from the Cross. The "Lord, Lord...."....wordless prayers. Help me see that I am not worthless. Help me. Bring me up from this pit. You've got to carry this, Lord, because I can't. I just don't know what to do with this. 

The desire is there to not burden other people with all of us. All the human messiness, all the problems, all the emotions. But God made us for community. He didn't make us to hide behind the "fine." 

It's not always fine. But in a sense, it is, because God's got this. God is always good and I am always loved. No matter what the Enemy whispers in the dark places at night, in the moments when sleep is elusive and the heart pounds fast and worst case scenarios play out against the shadowed walls. 

We don't have to hide behind fine. It's not always happy. It's not always joy. Sometimes it's the hard, the twisted battles, the darkness. It's the feeling of total emptiness. 

But letting people in--that can break the darkness. It can bring the light. That doesn't happen when "fine" is all that happens. 

It's not always fine. It's not always happy. 

But there is always something good under all of that dark. There is something good that will emerge. The cross brought the resurrection. 

We are meant to shoulder one another's burdens. We are meant to be community. 

And sometimes, that means letting others bring the light, and opening the darkness to them. Inviting them in to see the true, and the messy--but maybe, also, the beautiful. The beauty in the mess and darkness and shadows. 

 

 

 

 

 

Welcome, 2017

Daybook, essaysEmily DeArdo1 Comment

(And psst, it's still Christmas! Really! )

I've always liked this graphic from Ann Voskamp, and it especially works this year, because my word for 2017 is Courage. (actually, it's two words: Be Courageous.)

You might be wondering why I chose that word. Well, because sometimes I'm a 'fraidy cat. I don't audition for a show because I think I won't be cast. I don't take that trip because I'm afraid to travel alone. I delay in sending a book proposal because I'm afraid it will be rejected. 

And of course, all those things are true, if I don't go for it. But in being afraid that I won't be accepted, I don't try at all. And that's not a good thing. 

This year, I want to be embrace courage and the Nike motto: Just Do It. Just be brave. Don't give into fear. 

If an agent doesn't like my proposal, that's not the end of the world. There are tons of agents out there. 

This leads into words I've used in the past, especially TRUST. I'm still working on this Trust thing. It's hard. But trusting helps me to be brave, because it's like working with a net under me. I know that someone is going to catch me when I step out in faith. 

I hope 2017 is a year of Bravery. 

For God did not give us a spirit of timidity but a spirit of power and love and self-control.

-- 2 Timothy 1:7

The Lord is my light and my salvation--whom shall I fear? The Lord is the stronghold of my life--of whom shall I be afraid?

--Psalm 27:1

 

(Did you make new year's resolutions or set 2017 goals? I did, and my list is here.)

 

2017 Goal Setting

writing, essays, goal setting, Tidying Up, knitting, health, current projectsEmily DeArdo1 Comment

The last week of the year usually brings a few things for me--time with family, lots of books, and goal setting for the new year!

Ever since I discovered Lara Casey's powersheets, I've adored goal setting--and I've actually been getting things done. Her shop is called "Cultivate what matters", and that's what the powersheets do. Without them, there's no way I'd have finished my manuscript, written book proposals, sent queries, or upgraded my website/social media presence. That's probably the biggest thing the powersheets have done for me, but I've made progress in other ways, too. 

(And, no, I don't get paid to say this--I just love powersheets!)

I got my 2017 set in November and spent a few days doing the prep work. This is one of the best parts of power sheets. It's where you really get down to the reasons why you want to do things--why do you want to save money, or take that trip, or get that thing? What's your real motivation? Are you afraid to do big things? What's defeated you in the past from reaching your goals? (Lara's current blog series dives into this stuff, too!) 

So after doing the prep work and figuring out my "big" goals for the year, I then break those goals down into monthly, weekly, and daily goals for each month. The idea is that everything you do here is intentionally helping you meet a goal that will help you do what matters in your life. 

With all that said, here are my goals for 2017: 

1. To deepen my prayer life through more regular attendance at daily Mass and more times of daily prayer/devotions. If I don't have a deep, solid relationship with God, nothing else matters. 

2. Pay off the rest of my debts and grow my savings account. One of the things I really like about post-transplant life is my ability to travel, and I want to do more of that--and traveling takes money! So by cutting back on buying things I don't need (I'm doing the contentment challenge in January to help with this), I'll be able to pay off debts and have money for fun things like traveling! Again, there has been progress in this area, but I need to be more consistent. 

3. Be physically, mentally, and emotionally healthy by instituting regular workouts, weekly meal planning, and keeping up with my journal (I've been letting my journal slide of late. I don't want to do that!). I have grown in this area this year, but it's erratic growth. I need to make it a much more permanent part of life.  

4. Get the book published, offer a ebook for sale, grow the blog, and write what matters. I want to write things that matter to the people who read them--things that help you, inspire you, make you laugh, whatever. I don't want to write click bait. I want to write things that improve the lives of my readers. (So tell me what you want to read, OK?) 

5. Fuel my creativity by continuing to learn Italian, working on new art and knitting projects, and, of course, reading. I love learning new things! 

6. Simplify my space: Less stuff, more beauty, more organization, and increased hospitality. I made big progress on this this year as well--cleaning out my closet, taking many books to the secondhand shop (along with CDs and DVDs). So I'm proud of the progress I've made here. But there's more to do!

So those are my six big goals for the year. Each month, these get broken into monthly, weekly, and daily things I need to tend (in powersheets parlance). Daily things are things I want to make a habit--like exercise, checking my checkbook against the online transactions, reading the Bible for 10 minutes every day, practicing Italian. Stuff like that. 

Weekly things are things that get done every week: Daily Mass at least once, making a meal plan, doing a basic clean of the house, putting a certain amount of cash into my emergency stash here at home. 

Monthly tending are bigger things that I can do throughout the month. Some examples from my January tending list are editing my Nano 2016 novel, going to confession, completing a 30 day exercise plan.  

Some things are broken into monthly and weekly categories. The contentment challenge is broken into three months, with a weekly topic in a corresponding book. So there's a monthly "task", but also something to read each week. So the weekly devotion is written in my weekly tending list, so I don't forget to do that. 

I also write the daily tasks into my planner. That also helps keep me on track, because if my powersheets aren't easily available (though I always keep them on my counter, so I can find them quickly!), I can see at a glance what I'm doing that day. It's also great for things like the weekly cleaning--I can dust on Monday, vacuum Tuesday, etc. 

I find this is a better system than making resolutions. Resolutions are OK, but they usually don't have a plan or a why attached to them. "Lose 20 pounds" is a nice resolution--but how to do it? By going through the powersheets, I have an idea of how to do the things I want to do, how to achieve my goals, and how to be accountable to myself. I only have so much time here and I want to use it to the best of my ability!

Do you have goals for 2017? What are they? 

 

 

 

 

 

 

 

 

Three Things I Learned on Retreat

Catholicism, essaysEmily DeArdoComment

This past weekend, I went on a silent retreat offered by the Catholic Laywomen's Retreat League in my diocese. So, after a day or two to let my thoughts coalesce, I bring you the fruits of my contemplation!

Three things I learned on Retreat: 

Go Deep Into the Word

I'm afraid that regular Bible reading has never been on my list of things I do. I do lots of other spiritual reading. And of course, as I say the Office every day, I'm reading/praying scripture, particularly the psalms. But a regular habit of Bible reading has always eluded me. In retreat, I pondered this. I read so much otherwise, why in the world wasn't I reading the Bible regularly?

I think part of it was I allowed myself to say, "Oh, I'm not good at lectio." And I'm not, really. But at the same time, do I have to do lectio? No. I can just read the Bible and ponder what I've read without making a whole big production out of it. 

So I am going to get Deep into the Word. The retreat began on the feast of St. Jerome, who gave us the Latin Vulgate, and who famously said "Ignorance of Scripture is ignorance of Christ." No more ignorance. I'm daily diving into the Word and seeing what fruit it reaps. 

My patron saint, St. Thérèse, had this to say about the Gospels: 

But above all, it's the Gospels that occupy my mind when I'm at prayer; my poor soul has so many needs and yet this is the only thing needful. I'm always finding fresh lights there, hidden and enthralling meanings. 

 

Daily Mass Must Be a Priority

I "try" to make it to Daily Mass--not every day, but at least once a week. I put "try" in quotation marks because I don't really try. I don't put it in my schedule at the beginning of the week. That changes. Now when I do my weekly schedule, I'm going to ensure that once a week, Mass is written in.

Mass is the "source and summit of Christian life"  . If I believe that, I need to be getting myself to Mass ore than just on Sunday. 

Seek to be Eucharistic souls! Hunger and thirst to eat this living miracle; nourish yourselves with it! ... Let your Mass be the center of your day. Everything must flow for you from your daily Mass, and everything must culminate in it. Your day, because you have willed it, must be a thanksgiving for the Mass you attended that day and a preparation for the Mass you will attend the next day...Do everything possible to facilitate daily Communion. ...

You will not live this life of holiness, confidence, abandonment, and peace which I have preached to you so far, except in the measure to which you drink at the fountain of living water, the fountain which flows unto eternal life, the fountain of the altar.

--Fr. Jean C. J. D'Elbée, I Believe In Love: A personal retreat based on the teaching of St. Thérèse of Lisieux

 

Confidence, Abandonment, Trust

These three things are all interconnected. And it's sort of hard to explain. But I'm gonna try!

St. Thérèse knew that Jesus calls us just as we are. If you remember Bridget Jones' Diary, think of the scene when Mark Darcy tells Bridget, "No, I like you very much. Just as you are." Same principle at work here. Jesus knows that we are small and frail humans. But if we count on Him to help us, to make up for what we do badly, then we are well on our way to confident trust. "I can do all things in Him who strengthens me," as St. Paul says. (Phil. 4:13) We have to be confident and trust that Jesus will help us. "Never be discouraged by your faults," Fr. D'Elbée writes. As long as we are trying, advancing, then we're growing in holiness. It's when we think we're done, or we back slide, that there's a problem. 

We have to abandon ourselves to Christ. "We open our arms to him," Fr. D'Elbée continues, "yet we close the doors of our intelligence, of our will, of our heart, but not living in this abandonment. We bid Him come, but we do not permit Him to enter...'What shall I do? How shall I do it?' listen to Him saying to you, 'Let me do it.'" 

This doesn't mean that I don't plan, that I don't try my best! "Yes, do everything as if it all depended on you, and leave the result to the Divine Master, on whom everything really depends." (I Believe in Love 91) 

Mother Angelica talked a lot about the present moment, and that's involved here, too. What is happening to us in each moment is God's will for us. 

So in reading these chapters and bringing them to prayer, I realized that event hough I'm working on these things, I need to work on abandonment and real love--loving Jesus every moment, in every action, knowing that Jesus sees my heart and knows me better than I'll ever know myself. 

In Romeo and Juliet, the apothecary that sells Romeo the forbidden poison does so because he's under financial strain. "My poverty, but not my will, consents," he tells Romeo. "I pay thy poverty, and not thy will," is Romeo's reply as he receives the deadly draught. It's the same way here. Our nature might rebel against something. We might have thoughts or feelings that come and that we don't like. But if we don't will them, if we work against them, then we're making progress. 

It is confidence and nothing but confidence which will lead us to love.

--St. Thérèse 

You Get What You Get

health, essays, familyEmily DeArdo2 Comments

or: why I wouldn't do genetic testing on my future spouse

"You get what you get and you don't get upset." I remember hearing that as a kid, and it's a pretty good philosophy when it comes to babies. It annoys me when people say that all they want is a "healthy" baby. So, if the baby is unhealthy, they don't want it anymore? Huh? 

Genetics are a tricky thing. For example, take a look at my family. If genetic worked the way it was supposed to, my siblings and I would be dark haired, dark eyed, and sort of olive complected. This is because we have a father who is 100% Italian. 

Instead: 

Two blondes, one redhead. Two blue-eyed girls, one hazel-eyed boy. 

Yeah. 

Genetics don't always work the way the Punnet Squares say, y'all. 

In a very large family, there was no history of CF. No history of babies or kids dying early from unexplained causes. Nothing that would lead to any sort of hint that I would have CF. And in the 80s, you didn't really do prenatal testing, especially in 1981, when my mom was pregnant with me. 

But now, there are more and more people with CF saying, get your spouse tested. In fact, do IVF, so that you can only "choose" embryos that don't have CF. Because, you know, why have a kid with CF? 

Um.....because that's what you get? 

Put in anything genetic. Put in Osteogenesis Imperfecta. Put in hemophilia. Whatever. Take your pick. But just because your genetic tests show that you're not a carrier for one thing, doesn't mean your kid won't have something else. 

Why do we want to eliminate people because they're not perfect? Why are we so afraid of having children that might not be perfect? 

I don't understand it. 

We have no idea if my siblings are carriers for CF. They would have to marry another carrier to have any risk of having a kid with CF (real quick lesson: two CF carriers have a kid--the kid has a 25% chance of having CF, 50% chance of being a carrier, and 25% chance of having nothing to do with CF, genetically, at all.). I don't know if my siblings want to know. But I would hope that they wouldn't be worried about this. 

Take what you get. Take any kids you may be blessed with as the gifts from God they are. Take them as they come. And be happy that you have that child. God works in mysterious ways. Maybe your imperfect child is supposed to make you holier. Maybe he's supposed to teach you something. Or maybe God just knows that you're the right parent for this kid, even if you're afraid to be. 

Be not afraid. Take what you get. And give thanks. 

 

 

Why "powering through" illness is a bad idea

health, transplant, essaysEmily DeArdo1 Comment
Not a good idea when you're sick 

Not a good idea when you're sick 

Hillary Clinton is in the news, not because of her presidential campaign, but because she has pneumonia. Apparently, she's been sick for awhile, but the official diagnosis came from her doctors/her campaign yesterday. 

There was a lot of talk on Twitter (and I presume elsewhere on social media) about how women just "power through" illness. "We do lots of things when we're sick!" women were saying. "We're awesome like that!" 

Well, actually, no, ladies. It's not awesome. Trust me. 

I did a fair amount of "powering through" for the first 23 years of my life. And no, I wasn't running for president. I was trying to be as "normal" as possible. That meant school, extracurriculars, summer jobs. I went to school when I had a noncontagious form of TB and was falling asleep in my first period class because I was so tired. I had a summer job the summer after I almost died and spent two weeks in the ICU. I was so desperate to sing in my college choir's big Christmas Festival that I went from the hospital, to class, and then back to the hospital because I finally realized that, yes, I was way too sick to be in class, much less perform in a three-hour concert. 

There were times my college boyfriends had to almost hold me down to keep me from going to sorority meetings, or Student Government events. 

Some of this pigheaded Irish determination was a good thing. It kept me involved, it kept me active, and I had a great time in college. But some of it was really bad. I didn't know when to stop. I worked up until the weekend before my transplant. Seriously. I had to drag myself out of bed every single day, but I was there at my office. The only time I wasn't was when I was in the hospital. I might have come in a little later in the morning, but I was there

After my transplant, this all changed. Partially because I was much more susceptible to illness, including getting illnesses from other people. I had to learn to say No to going to things when sick people were there. I told my friends that if someone was at a party and that person was sick, I wasn't going to go. 

I had to make sure I got enough sleep. This is huge for me. I realized that I needed 8-9 hours of sleep every night. I definitely had not been getting that. And when I was sick, I needed to be sick--and not "power through." Because powering through only made it worse

I had pneumonia this past winter. I was in the hospital for almost a week, and it took me more than a month to recover when I was back home. Pneumonia kills millions of people a year. It's a nasty, nasty bug. And yes, I'm more susceptible to it, and always have been. But people over 65 are in the high-risk group, too--and Hillary Clinton is 68.  

Pneumonia isn't something that you can "power through." There is "walking" pneumonia--a milder case of it. But it's something that requires rest, and lots of it. You feel like you've been run over by a truck. It's Not Fun at all. And if you don't rest appropriately, then guess what? It lasts longer

Ladies, we have to stop "powering through." The world isn't going to end if we're sick. (OK, this might be different if you're the President. Or, even, Secretary of State.) But that's two people in the world. Listen to your body, and give it what it needs! Let yourself heal! Don't put yourself--and others--at risk for being sick. Do the counter-cultural thing, and take care of yourself. 

It's not easy. I know that. I spent 23 years resisting this entire idea. "I can rest when I'm dead!" 

Well, if you don't take care of yourself, you're going to be doing that sooner rather than later. 

 

 

For Sage

essaysEmily DeArdo1 Comment

I lost a friend yesterday. 

Sage was waiting for a double lung transplant. Like me, she had CF, and like me, she was 34. She had a wonderful husband and three hilarious dogs. We talked almost every day, about Outlander and Pocket Jamie and Mascara brands and even eyelash curlers, and what I should wear on a first date. (And then, helping when the date didn't call back.....) 

She was such a funny person, sometimes sarcastically so, and we had the same sense of humor. She was the only person who really understood CF life, so we could bitch to each other about Stupid Doctor Things. (And stupid other things.....) She loved the color purple. She worked for the U.S. Senate and so we could talk about Crazy Things Constituents Did. She adored scary movies, which terrify me, but she loved them. She would watch them with her nephew. She was a huge Bachelor/ Bachelorette fan. She had fantastically curly hair that she dyed auburn; her niece Lizzie had the same corkscrew curls. I was jealous of her hair.

She would've liked this--purple confetti. 

She would've liked this--purple confetti. 

(And GOSH I hate using the past tense.)  

She lived in Oklahoma and Wisconsin, so we'd never met in person. A mutual friend introduced us over the interwebs, so this is one case where a Facebook friendship became as real as any of my "IRL" ones. 

She was admitted to the hospital last week; her last text message to me told me she was doing a direct admit from the ER. I sent her texts and messages variously; I knew she was in the ICU so I knew she probably wasn't reading her messages, but I hoped Jerry (her husband) would tell her.  I didn't want to bombard her phone with notification noises, but I felt like I needed to let her know I was thinking about her. 

Yesterday I felt this keen desire to send her a message: like, do it NOW, Emily. So I did. I told her that I was thinking about her and I missed her and I loved her. It was a little sappy for me. But you know. I thought she'd know what I meant. 

And then, a few hours later, she died. 

Right before she died, I bought a new eyelash curler. We had talked about this a few weeks ago--which ones were the best. She was a Girly Girl and I knew she'd have opinions. So I bought the one she suggested, and it was purple, to boot. I thought, Sage would love that I just bought this. I wanted to send her a picture of it. 

I wish we would've gotten to meet in person. I wish I'd have met her husband and her Awesome Dogs George, Piper, and Sadie. I wish we could've played Monopoly together. 

Guys, CF sucks. It really does. And so does people dying while they wait for organs. She was such a light. And now she's gone. 

Rest in peace, dear heart. I'll see you when I get there. 

"Grief is the price we pay for love." --Queen Elizabeth II

(A note about this video: Sage and I were connected through music. She was a friend of Emily, who was the twin of one of my best friends, Amilia. Amilia and I were in All-State choir our senior year of high school, and this was one of the pieces on our program. It was written in honor of a young lady who died too soon. So not only is it appropriate for Sage, but it's appropriate because music is how I met Amilia and Emily, and thus, Sage.

It is also one of the most beautiful and most moving pieces of music ever written.) 

 

 

Summer Scribbles: Journal keeping

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Today's SITS girls prompt: 

Do you keep a journal? 

I sure do. 

I have since I was 12 years old, actually, and my Aunt Patty sent me a Hallmark diary for my birthday. It's one of those that had the little combination lock that after about 20 uses just popped open without the combination, so it wasn't the world's best security measure, but my siblings knew better than to try to sneak my journal (although I didn't really try to hide it. It was always on my nightstand.) 

Since then, I've always kept one. Sometimes I write with more fervor than others, but I've always had one with me, and I save them all. In my house there are two big bins full of my journals. My currrent one is a red Moleskine I got at the Strand in NYC a few years ago. I generally buy journals when I'm on vacation and then they get used a few years later; when I was in California I bought a Bouchon Moleskine notebook. I've also got a notebook my parents brought me back from Disney World when they went back in 2011. People also gift me journals at an alarming rate, but I don't mind this. 

My blog isn't my journal, and my journal isn't my blog. This is something I think people can easily get confused, especially younger bloggers. What I write on this blog is obviously public. What I write in my journal is intensely private. Sometimes I'll use what I've written in my journals as a springboard for public writing, but this space is not where I pour out my soul. That's what a journal is for.  

Blog is different from journal, journal is different from blog. Important distinction, at least in my world. As much as I love my readers, there are some things that I'm just not going to share with the interwebs. 

 

Summer Scribbles: Let's Communicate

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Continuing with the SITS Girls' prompts, this week's is: 

Do you communicate differently online than in person? 

Short answer: Nope. 

Long answer: Still nope, but with qualifiers. 

I try to write the way I talk. I want my pieces to have a sort of conversational air about them, like I was talking to you, instead of you reading words I've written. Some of my friends have told me that I've accomplished that, so that makes me happy, because it's one of my main goals. I don't think you need a stilted writing style to get a point across. I want to sound approachable and like myself. 

Now, when I'm communicating on things like Facebook, or comments sections of articles, I try to be a bit more circumspect, realizing that things like sarcasm don't exactly transfer. So I try to be nicer, in a way, than I am in person. Not that I'm mean! But writing WHATTTTT?!?!? on a Facebook page doesn't really convey the same thing that it would in my voice, with facial expressions, etc. So I can't do that all the time. I try to keep it cleaner for the sarcasm-impaired. 

But my hope is always that when you read my pieces, it's like we're having a conversation, and that my authentic voice comes through. 

 

 

Summer Scribbles: Seeking Motivation

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I am a hard person to motivate. 

Well, wait. Let me rephrase that. 

I'm a hard person to motivate--sometimes. 

I'm not a hard person to motivate when it comes to doing things for other people. If the essay needed written for school, it got written. If I have to be at the doctor's office, I'm going to get up early and be there on time. If I have to go to a class, I'll be there. I'm good at being held accountable in exterior ways. If someone is depending on me, or needs me to be somewhere, I'll be there, and I'll do it. 

I am very bad at self-motivation. 

If you've read Better than Before, by Gretchen Rubin (and if you haven't, get on it), then you realize that I'm an Obliger. 

Rubin writes about how there are four tendencies--everyone is one of them. You're either an upholder, a rebel, a questioner, or an obliger. To determine what you are, you can take this quiz. But it basically boils down to how you respond to interior and exterior expectations. 

An Obliger, which I am, "Meets outer expectations but struggles to meet expectations they impose on themselves." 

So, it's hard for me to do things without accountability. Exercising and diet is a huge area where this is true. If I had someone to go to the gym with, or to go to class with me, or even someone I lived with to cook with and for, that would be a huge help when it comes to meeting the nutrition and exercise goals I've set--because I'd be responsible to someone else. 

One of the ways I work around this is by using my Powersheets--I have my tending list for the month, which has all my goals broken into monthly, weekly, and daily sections. I schedule my Barre 3 classes ahead of time, so they're in my calendar, and if I don't go, then I lose money. I have "meal planning" as one of my weekly goals. And yes, as sad as it may seem, I do get a thrill when I can check off the boxes indicating I've done these things. 

But it's much, much easier for me to get off track with what I know I should do if I don't have an external motivator or someone/something to keep me accountable for what I do. Or don't do, as the case may be. 

I also have an avoidance policy on things I'm not good at, like math. I probably, intellectually, could've done fine in Math. But I hated it, because I wasn't automatically good at it, and a lot of it just didn't make sense to me.  I'm that way with exercise--fi I don't get it pretty quickly, then I tend to give up and feel like a failure. I'm trying to get through that with my barre classes, and I have found that, as you would expect, the more I do it, the better I get at it. I'm just not a person that likes doing things that I don't have a natural affinity for, which probably makes me like most of humanity. 

I have some friends that I talk about nutrition and exercise with, and they do a good job keeping me motivated to keep trying. So they're my external accountability, for the moment. 

But I'm still looking for that fail-proof motivational tool. I'm guessing, sadly, it doesn't exist. 

What sort of temperament do you have? 

How do you motivate yourself to do things that you know you should do, but you don't necessarily want to do? 

 

 

Summer Scribbles No. 7: What is Courage?

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The SITS girls question of the week: 

How do I define courage? 

I actually think about this a lot. Does that make me weird? 

A lot of people tell me that I'm brave, and I don't think I am. 

To me, courage and bravery involve risking something when you don't, necessarily, have to. Firefights and policemen are inherently brave, as are soldiers. They are putting their lives on the line every day to protect and defend people, and they don't have to. (Well, OK, at least in the U.S., soldier wise.) 

People who save people from drowning, or rescue kids from burning buildings, or the people who ran into the buildings on 9/11--those people are brave. 

I don't consider myself brave. The things I do are the things I think anyone would do in my situation. The choices I've made, I've made to save my life. Choosing transplant wasn't brave. Without it, I'd be dead. Full stop. 

I know that not everyone with CF makes the choices that I've made. And I know that part of me decides to fight even when it might be easier not to. And I guess that's brave. 

Is it courageous to do those things that keep you alive, even when you don't want to do them? Were all those years of PT and nebulizers and giving myself IV treatments in the bathrooms at work brave or courageous? 

I don't know. To me, it was just life. The other option was death. And that's not an option I choose. 

I'm not afraid of death, by the by. I never have been. Maybe it's because I know that something better is awaiting me. (Or at least, Purgatory.) I trust that God's got this. He's going to take care of me. And I'm not really even afraid of dying--because I've done that process. I've gotten, really, as close as you can, I think, and done it twice. And both times,  I've been back. 

But does all this make me courageous? I don't know. I don't think so. Because to me, none of it was conscious choice

This, on the other hand. This works well for me: 

I have never, ever wanted to be defined as the girl with CF. Or the girl who had that transplant thing. I don't so much mind the latter, which pops up a lot. But I am so grateful to my parents for letting me have a normal life. Some CF parents don't send their kids to regular school because they're worried about all the germs floating around. Guys--we have an immune system. CFers can have totally normal lives. I don't want to live in a bubble. I don't want to have a live that's so protected from everything, tainted by fear of what might happen. My identity is as a daughter of God, and not as some weird genetic thing. 

Am I brave? I don't know. To me, all of this just is. And it always will be. 

 

Summer Scribbles No. 6: Tools of the Craft

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Today's SITS girls prompt: 

What's your favorite writing tool? 

Well, it depends. 

I do love my MacBook Pro. I mean, for blogging and writing, it makes life so much easier. That being said, I love paper and pen for keeping details of my writing projects straight. I have a blog calendar in my bullet journal that I refer to, and I find that really helpful. Not only does it save me from "hmm, what to write about today", but it's easy to make notes of things I want to write about on certain days (saints' days, anniversaries, holidays, etc.). It also keeps me from writing about the same thing all the time.  I figure you guys want some variety in your reading, right? 

I'm a big pen and paper nut. I love using pretty pens and I am very picky about my notebooks, especially for my journals. I generally use Moleskines for those. They're durable and pretty, and even better if they're a special kind I can get when I travel (like the one I have now, from the Strand in NYC.) 

My fountain pens are all Lamys, but I also love Le Pens and Sharpies and...well, OK, I just love pens. Pens rule!

You can see this journal is pretty well loved. :) 

What about you? Do you have a favorite pen/paper/notebook/planner? 

 

Amazing Grace

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Amazing grace.

That's really all that can be said about eleven extra years on the planet. 

That's more than 4,000 extra days. 

That's sort of staggering, if you think about it. 4,000 days. 

Extravagant grace. 

Extravagant gift

Some people, post-transplant, talk about bucket lists. About climbing Machu Picchu or going around the world and seeing the great sights. And I've done some traveling, post-transplant. I've done some things that I never thought I'd do, and met people I never thought I'd meet. 

But the most delightful things are the small things. 

Getting to see my godson graduate from high school. 

Holding a four year old on my lap during a fireworks display. 

Sharing root beer floats with friends. 

Deeply diving into God's life in me, deepening His life within me and my relationship with Him. 

Feeling the ocean waves wash over my bare feet. 

Of course, all of this is only possible because Suzanne was an organ donor. When she died 11 years ago, her family decided to honor her wishes and donate her organs. And since she died due to a brain aneurysm, her organs were in great shape. She saved a lot of lives that day, including mine. 

If you're not an organ donor, please be one. 
If you are, tell your family that you are one. 

Some people, when faced with health issues or other problems, wonder "why God has done this to them." And I've never thought that way. I'm not a saint. But I've never wondered why all of this happened to me. 

God gives everyone their cross--and it's a cross that fits them. This is the one that fits me.  My salvation only comes this way. And if I can drag a few more people to heaven with me, then that suits me just fine. :) 

I'm writing this in a coffee shop on a sunny summer day. It's a totally ordinary day in July. But it's a day that I never would've had, without Suzanne's generosity, and without the incredible skill and dedication of a whole team of medical people. 

Eleven years later, their skill, and their work, still live on.

I am so thankful for them. I'm thankful for Suzanne, of course, and her family. And even on the bad days, I am so thankful for every moment of ordinary joy. 

Amazing grace. 

Summer Scribbles No. 5: I'd Like Your Vote

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Or, actually, I wouldn't. 

Today's Summer Scribbles answers this question: 

Have you ever wanted to run for political office? 

To be brief: No. HELL no. 

I hated selling candy for my school fundraiser. I loathed running for student government in college (really, I did). I have done a lot of campaign work in my time, and I don't mind campaigning for other people, but I hate marketing myself. It's one of the reasons I hate asking people to subscribe to the blog-but hey, I'll ask you now!

Please subscribe, if you don't already! There's a big pink box in the corner! 

And that is all the campaigning Emily will do today. :) 

Campaigning is definitely an art. You have to really love it, because it's continuous. As soon as an election ends, you start gearing up for the next one. There is constant fund-raising, and the elected official has to keep name recognition up to make the next election cycle a little easier. You need a lot of people to run a good campaign, and you need a fair amount of money. Signs, flyers, banners, t-shirts, etc. are not cheap, and neither is throwing the fundraisers. It's definitely a spend money to make money (or get elected) proposition. 

I've worked on two presidential campaigns, a gubernatorial campaign, and a bunch of smaller campaigns. And it can be fun. It can also be really not fun, when you're standing in a wet, muddy baseball field in a downpour sans umbrella because the Secret Service does not allow umbrellas at said event. 

So, while I will campaign for others, I will never, ever run for political office. EVER. 

That's a promise I'll keep! 

Summer Scribbles No. 4: The Summer After High School

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Using the SITS girls monthly prompt list

The summer after high school was a pretty nondescript one for me. I did some baby-sitting, I read Harry Potter and anxiously awaited the release of the fourth book. I spent a lot of time with my high school friends, swimming in their pools. There were a lot of sleepovers. 

(Side note: weren't sleepovers the best? I mean, really? I miss those. Although, sleepover pro tip: When your friend's parents are at a wedding out of state, leaving you and said friend alone in the house, with only the scaredy-cat dog, it might not be a good idea to watch Silence of the Lambs at 2 A.M. Just, you know, maybe not the best idea.)

Most of my friends were going to college sort of locally, meaning in the state of Ohio. A few were going out of state. This was before the advent of Facebook, so we knew it was going to be harder to keep in touch, but fortunately this newfangled thing called email had opened up wide possibilities. And AOL instant messenger! That was going to be super useful during our college years. 

There was some packing for college. And yeah, I started early. Like, August. Even though I was only going about fifteen minutes away. I had one summer orientation session, when I had to set my fall schedule, and then orientation orientation began August 25th. Of course it rained that day. It rained every single move in day of my college career. Again, glad we didn't have a lot of stuff to move. I was just really glad that my dorm had air conditioning, and that you couldn't smoke on our floor. Yes, you could smoke in the other dorms at this time. But you couldn't have lit candles. Crazy much? That got changed at the end of my freshman year. 

I was excited to go to college. I mean, I had liked high school, but I thought I would really like college, and I was right. I did really, really enjoy college. OK, the almost dying wasn't a fun thing, but that wasn't college's fault (and that's another story), but most of it was a great time.

It did feel odd, though, to not have work to do during the summer. The summer before my senior year, I'd had the Summer Reading List for AP English. I remember spending long hours at the neighborhood pool with my super cheap copy of Jane Eyre. But there was no summer reading--at least not yet--for incoming college freshman at my school. That changed a few years later, when every incoming student had to read an assigned book, with classes and events during the academic year surrounding said book. 

So it was just me, my friends, swimming pools, and sleepovers. It wasn't a bad way to spend a summer.  

 

 

The Fight for Joy

essays, health, transplantEmily DeArdo4 Comments

The tagline of this site is "Celebrating Ordinary Joy." And that's what I try to do on a daily basis--to remember that this life is so incredible, such a miracle, that everything is Joy. The brown bananas in the freezer awaiting their transformation into muffins; the roses and sunflowers in a vase on the counter; even the trash bags that need taken out. Everything is a gift. 

But that doesn't mean it's easy. I never wanted a Pollyanna tag line, where we play the glad game, and blithely ignore realities. Sometimes, reality is hard. 

Last week, I felt as low as I've ever been. I tried all my normal things--journaling, napping, bubble baths, talking to friends, a holy hour, a weekday Mass. When I go to Mass, no matter how crappy I might feel, usually the consecration floods me with peace. Not on Friday. On Friday I was totally just at Mass. I didn't feel a thing. It was like robot-me. 

I talked to my therapist (Most people, post-transplant, see a therapist. It's par for the course.) I basically didn't talk--I sort of fell apart. I was a mess. I wasn't sleeping, I wasn't eating right, I was forgetting conversations I'd had two days ago--and I don't do that--and I had no idea why. 

Joy was really far away. Incredibly far away. I thought about the tagline and I laughed. Joy? Really? JOY right now? 

No Joy. 

On Saturday, I was very gentle with myself. I read a book suggested by Elizabeth--The Awakening of Miss Prim--and I re-read the Restore workshop pieces. I went to Mass. I made dinner. I slept when I could. 

Today, I had a doctor's appointment. It was my normal clinic visit, but I was anxious because I didn't know what was going on with me. I wanted to find out. So I spilled out all my symptoms in a flood of words. 

The doctor and the nurse listened, and we figured out what it is. It's nothing major--it's just my body adapting to different drugs, and readjusting hormone levels and all those delightful things that happen when you're taking very powerful medicine. 

So my body has to readjust--and this will happen both physically and mentally. As it readjusts, things will go back to baseline. But until then, it's measures to fix the symptoms--sleeping when I can, getting good food and exercise, having the A/C set just about arctic. :) 

I'm so happy that I'm not crazy. 

But during those foggish days, days when joy seemed so far....it was hard to remember to look for the ordinary joy. 

But it's there. It's always there, even when I couldn't see it, or couldn't feel it. 

When it's elusive, hang on. Keep looking. Find that one thing. It's there. And that one thing can be a crack of light that you need to keep looking, keep seeing....what keeps faith. 

 

 

 

Summer Scribbles No. 3: A Taste of Summer

food, essaysEmily DeArdoComment

Like most good things, this recipe was created sort of by accident.

My friends and I spent a weekend in Hocking Hills in July, in a lovely cabin that had a full kitchen, so we decided to do most of the cooking. We have a lot of culinary-minded friends, so I was planning on making a few things: my Irish soda bread (made ahead and brought down for breakfast), and a Caesar salad. I also decided to do balsamic strawberries as an ice cream topping or fun dessert, because I love balsamic strawberries and more people need to like them too.

I had asked a friend of mine to bring eggs for the Caesar salad, since I was going down right from work and didn’t want the eggs to be destroyed in my car. Sadly, friend forgot the eggs, but that led to this creation, so I guess that’s OK.

Anyway, this salad was quickly imagined, and everyone liked it–the guys even fought over the leftover strawberries. I have made it for another meal with friends and they liked it so much that one of them asked for the recipe so she could make it for her friends.

So here it is. 

Summer Strawberry Salad

This serves about six people, give or take.

2 heads romaine lettuce

2 pints strawberries

1-2 tbsp. brown sugar (light or dark. Or Splenda!  really like splenda brown sugar because it doesn’t get hard and gross in the bag)

2 tbsp. balsamic vinegar

EVOO

3 lemons

First, make the strawberry topping, because this need to sit for at least 20-30 minutes (If you can get an hour of sit time, that’s optimal)

Lop off the top of the berries and cut in half. Place in a bowl. Add the sugar and balsamic vinegar and stir to combine. Let sit.

When you’ve got about five minutes to dinner (or you’re ready to eat), start the salad.

Starting at the frilly top end of the lettuce head, cut the lettuce into 1-2 inch pieces. Discard the stem end. Then cut down the middle of the lettuce, which will cut each piece in half, leaving you with smaller and easier pieces to eat. Continue with the second head and place the lettuce in a serving bowl.

In another small bowl, add 1/2 c. of EVOO, depending on how much dressing you like. Add the juice of two lemons, then whisk together. Remember, there’s balsamic going in here, too! Taste, and add more lemon juice if necessary. 

When ready to serve, add strawberries to salad. Add dressing. Toss. Eat a piece of lettuce to check seasoning. You may need some kosher salt or pepper added for seasoning. Totally up to you.

 

Summer Scribbles No.2: Sink or Swim

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Continuing on with Summer Scribbles (using prompts from The SITS girls), here is this week's prompt: 

When did you learn to swim? 

Um, well. This is sort of a funny story. 

I cannot "officially" swim. By that, I don't mean that I can't swim, because I can. I just mean that, in official parlance....I flunked swimming lessons. 

Yes. I'm a swimming lessons drop out. So is my brother, by the way. 

Back in the day, when I was probably five or six, my mom enrolled me in swimming lessons, like almost every other parent around here. I wasn't afraid of the water, and I would get in just fine. I'd kick and splash and all that. No problem.

So how'd I fail? 

I couldn't float. 

Really. I guess I just wouldn't trust that the water would keep me up. So I refused to do it. 

Thus, I was unable to move up to the next level of swimming lessons. 

I sort of taught myself backstroke while watching the Barcelona olympics, and noting what the commenters said about technique. I cannot butterfly or breast stroke, and I really can't do freestyle, either. I do my own sort of freestyle. But I can handle my own in a pool. I love the ocean, and baths are one of my favorite things in life. Water and I are friends. 

However, I used to get really nervous watching kids in water. Part of it was my lack of strong swimming skills, but also, when you have crappy lungs, the idea of not breathing is not one you voluntarily accept. So the idea of going out and chasing down a kid while I could barely breathe while swimming didn't seem good. 

But, since I have 22 cousins (not counting my siblings), and the vast majority of them are younger than me, and my aunts in Pittsburgh have pools (two did, now it's just one)--I got to watch a lot of kids in the pool. It always baffled me. I have many cousins who are excellent swimmers. There are a whole bunch who were on their high school swim teams, for pete's sake. Are you sure you want to trust me with your offspring, oh aunts of mine?! (They did. No idea why.) 

It's not such a big deal now, because almost all the kids are grown, or old enough that they can handle themselves in the water. 

I'm probably not the person you want in charge if you're sending your tiny tots to the water park. Or the ocean. Unless your kid really doesn't want to swim. Or go out beyond the breakers. 

But I can float now.

How did you learn to swim? Were you ever afraid of the water?