Emily M. DeArdo

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essays

Joy In the Morning (OR: How I get up every day and do life)

CF, essays, transplantEmily DeArdo2 Comments
My siblings and I on my brother’s wedding day.

My siblings and I on my brother’s wedding day.

Warning: This might be a sort of rambly post. Settle in.

I was visiting my therapist last week. Yes, I see a therapist. I have since I was 17. A lot of people with CF do (not all, but a lot). I have no shame in telling you that.

So anyway, I was at an appointment with my therapist, and we were talking about how I was a bit maxed out on doctor visits. I mean, in almost thirty-seven years of life, I think my quota’s been hit, right?

And that doesn’t even count the other “stuff” we do—Mom accessing my port every month, the meds I take (which are vastly less than pre-transplant, btw), the blood glucose tests I’m doing twice a day now, etc. It’s a lot. It’s less than pre-transplant in some ways, and more in others. I have a colonoscopy every five years, which means one next year. I have a mammogram in April, because my mom had breast cancer and so my sister and I have to start our mammograms at age 37 (ten years before Mom was diagnosed). And then there’s dentists and eye doctors and the things normal people do.

So, yeah, it’s a lot.

This led to talking about compliance, which means, doing what the doctors tell you to do. And I told a story that I thought was illustrative.

When I was about seventeen, I was having a regular clinic visit, an I saw a sign on the wall of the exam room, saying that if you were 95% compliant with taking pulmozyme (one of the CF meds), you’d get a prize at your next clinic visit, see your nurse for a chart to win! Stuff like that.

Now, I never did these, because, generally, I was too old. This stuff was generally for the smaller kids, to get them in the habit. But what I thought was interesting was that the center wasn’t pushing perfect compliance.

Because that doesn’t exist.

Now, look, I’m not saying I was a slacker. Because I wasn’t. My mom, for one, wouldn’t let me be, even if I was disposed that way. I take my meds. I did my treatments. But yes, sometimes there were times where I put in a few minutes of precious sleep over a “perfect” Vest treatment, when I was in college. Sometimes I just went to bed. Not often, but sometimes. I wasn’t “perfect”, and I’m not perfect now. To be “perfect” now, I’d be a MESS. I’d be taking meds all day long, worrying about timings and if this was going to interact with that and how does this work and oh my gosh my brain is going to explode!

I take all my meds, and I take them twice a day. Is that perfect? Well, no. It’s not optimal. If can affect absorptions. *

But here’s the thing—I want a life. I don’t want to live in a glass bubble.

I went to school. I did activities. I rode bikes with my friends and went to the pool in the summer with them and then we went to the coffee shop and played board games. I had sleep overs, where I didn’t bring my equipment! I went on choir tour! (And yes, I brought the mini nebulizer!) I went to college.

Honestly, if my parents had tried to wrap me up in the bubble, I would’ve had a fit. I always wanted to be like everyone else, as much as possible. As Erin once said in a Home Town episode, I’m like a wild pony, and I need freedom!

(Not too much freedom. But enough freedom.)

So anyway, talking about all the things I had to do every day, my therapist then said, well, how do you do it? I mean, what gets you up in the morning?

And then I said, “well, that’s sort of what my book is about.” (Because it sort of is. Sort of. The book is sort of about a lot of things! )

But here’s what it comes down to:

Yes, there are a lot of things I have to do in my life. More than the average bear, that’s for sure, so when people say “well, you just have to suck it up and do X,” I want to roll my eyes, because that’s a big chunk of my day. (I’d wager it’s a large part of everyone’s day. As my grandfather used to say, “that’s why they call it work!”) But yeah, for me, and for other people like me, we have a lot of stuff on a daily basis that isn’t fun but must be done, and you just do it and don’t whine about it.

But what gets me up in the morning? Well, a lot of things. I’m very in touch with my inner child and I get excited about really little things. When I was working in the Senate, a lunch date with my Dad was enough to make me excited for the day. Today, it’s stuff like, a package is coming in the mail! It’s a hockey night in Pittsburgh! I get to write today! Oh, this book comes out! My book is in at the library! Chuy’s with Mary!

I’m very easily amused. And that helps me, I think, because it overrides a lot of other things that are not so fun. (Like making myself go to the gym. And poking my fingers. And doing doctor paperwork.)

But a big part of this, and this is what I’d say to anyone facing a chronic illness, is this:

Go live your life!

You really, really, really cannot hole up in your house and be all sheltered. You can’t. GO LIVE YOUR LIFE. Go outside! Do things! Be free! Have fun! Go to the park! Go swimming! Pet a dog! Whatever!

Yes, treatments are vital. YES, compliance is important—if I hadn’t been a compliant patient I NEVER would’ve been listed for transplant! But if you’re caught up in PERFECT, then…..you’re going to miss things and your life will be so small.

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Seriously. Do what the sign says.

Live your life. Take your brain with you.

*: As far as absorptions: the only meds I take that NEED to be taken around the same time every day are my immunosuppressants (the prograf). That’s important. However, I am also far enough out that if I’m off by a few hours in a dose, the world will not end. When I traveled to LA, my nurses told me to just take the meds on LA time and not worry about being exact. I used to take my meds exactly at 8 AM and 8 PM (even rushing to the lobby of the Ohio Theater to take meds before a symphony concert started). Now, it’s generally around those times. I’m not quite as OCD.

The meds I’m talking about here are things like my nexium and magnesium supplements. You’re not, really, supposed to take them together. But if I didn’t, then I’d be carrying around meds all day and thinking about when to take them, as opposed to thinking about things more worthy of my brain space! It’s not a huge deal to take them together. But yes, some meds do have to be taken at certain times, and when I do those (like home IVs) then, yes, it’s on the dot as much as possible. You usually have about an hour leeway on either side of the dose time (for example, if the dose is due at 6 PM, you can do it at 5 or 7, but not 4 or 8.)








Orchard House

essays, Orchard HouseEmily DeArdo1 Comment
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I’ve decided to call the new place Orchard House, for a few reasons.

One, Little Women was the first “adult” book I read, back in third grade, and it’s always resonated with me, in various stages. As a kid, I liked Amy, because she looked like me (the blonde). Of course I evolved into Jo, the writer; Beth, the one who stayed behind, was also relevant for a lot of my life, although I’ve never been that sweet, and she played piano, which I do (sort of—I’m self-taught). Meg, the oldest, has also had resonance over the years.

Also, Orchard House was a cozy place of creation—the girls were always making something—but it was a home. Sort of idealized, yes, but a comfortably, cozy, safe place. Who doesn’t like that idea?

And of course, there will be lots of writing happening here. So I’ll be channeling Jo in her attic room. Although my room isn’t an attic and it’s a bit nicer.

I  love  my desk!

I love my desk!


So, a snapshot of the new place, and it’s name. More decorating photos to come, but I wanted to introduce you!

The Week of Everything

essaysEmily DeArdoComment
A gorgeous rose from the bouquet my brother and sister in law sent me, celebrating the book!

A gorgeous rose from the bouquet my brother and sister in law sent me, celebrating the book!

This is the week of everything.

I’ve started writing the book.

I will sign the contract this week.

I’m moving.

Yup, it’s a lot.

But in the midst of all this good stress (and it is good stress), I’m really thankful for my body.

And that’s weird for me to say, because normally, my body and I are at odds. It’s not perfect, by any standard. And it never will be. It’s always going to be ‘Healthy for me’, which is not healthy for anyone else, generally.

But right now, it’s able to take out big bags of trash, and go under beds and cabinets, and pack boxes, and clean toilets. It’s slow going, because my knee never really recovered from the meds last fall, which messed it up, and I still only have 54% lung function (which is so much better than 19%, don’t get me wrong!), so I don’t work as quickly as someone else might.

But my body can do these things. And I’m really grateful for that. It can do these physical tasks, and I can type these words.

So even though it’s the week of Everything, and I’m running around like a crazy person, I’m glad I can run around like a crazy person.

No yarn along this week, and no quick takes, because it’s The Week of Everything!

But next week, maybe a tour of the new place?

Listen Up! (For World Hearing Day)

essays, health, hearing lossEmily DeArdoComment
(c) Wikipedia

(c) Wikipedia

World Hearing Day was yesterday, and so I thought I’d put up links to the post I wrote last year, about my CI and how it works and ways people can make hearing better for everyone!

So if you missed them the first time:

Part I: How I lost my hearing

Part II: How the Cochlear Implant Works

Part III: Living with a CI

Part IV: Accommodations, i.e., the post that you should read even if you don’t read any of the others!


I am (hopefully!) getting my CI upgraded in the next few months. The current processor I have has been “obsoleted”, meaning that if it breaks, Cochlear (the company who makes my processor) won’t fix it, they won’t sell any more replacement parts for it, etc. Now, they do this, in part, so that insurance companies will pay for new processors, because if it can’t be fixed anymore, then, yeah. Probably need an upgrade. This one should be better and allow me to hear more, but I have no idea until I get it. :) I do know that it will have bluetooth capability so it can stream my iPhone sound directly into my processor, and this might be a big thing. We’ll see what happens and I’ll let you know!

And thinking about my CI is timely because of a conversation I had in a lung transplant group on facebook. We were talking about the toxicity of a certain class of meds, and that they are crazy hard on the body. Some people were adamant that they would never take a drug in that class.

But here’s the thing—all meds are toxic at some point. They just are. Tylenol is! I knew that the ototoxic drugs were destroying my hearing. But I decided I’d rather be alive, than dead with great hearing. It’s about choices. And sometimes, yes, you just have to cut out a class of drugs. The meds I took over the fall for a sinus infection have pretty much messed up my right knee permanently. I’m not really happy about that. But you know, I like being alive, I like that we managed to stop the infection without it 1) getting into my lungs and 2) requiring the big guns of IV meds and /or hospitalization.

It’s a trade off.



Got $20? You can feed a child for an entire YEAR!

Catholicism, essays, LentEmily DeArdoComment

I am a BIG fan of Mary’s Meals, and you should be, too! Let me tell you why.

(Also, SUPER cute video at the bottom!)

One of the Mary’s Meals t-shirts I picked up at the Columbus Catholic Women’s Conference last weekend.

One of the Mary’s Meals t-shirts I picked up at the Columbus Catholic Women’s Conference last weekend.

As we approach Lent, people start to think about Lenten penances, and the pillars of Lent: Almsgiving, Fasting, and Prayer. We should think about these things all year, of course, but especially during Lent, when we prepare for Christ’s Death and we imitate His 40 days in the desert.

It’s sobering to think about people who do not have enough to eat, who are truly starving. Not just “food insecure”, but really, truly, starving. People who will not eat on a daily basis. According to World Vision, one in eight people in the developing world do not have enough to eat.

Mary’s Meals has a simple idea: One nutritious meal every day for a child in a place of education.

Children who are hungry can’t learn. That seems obvious, right? You can’t think if you’re starving.

64 MILLION children around the world who are hungry can’t attend school—they have to beg for their food instead.

Mary’s Meals wants to stop that—they want to help children LEARN and be fed.

So, in 18 country around the world, they set up food serving stations at schools, run by local volunteers, who feed the children a nutritious meal every school day. In some places, it’s an actual school. In others, like in India, it’s “non-formal education centers”, like railway platforms, where kids learn and eat. In Madagascar, they actually feed children in prison, because in the prisons, the food service isn’t consistent. The kids learn and get fed.

Feeding one child for an entire school year costs $19.50.

That’s it! $20 feeds a child who otherwise wouldn’t eat. And when they eat, they are better equipped to learn, and as they learn, they can get out of poverty, get a job, and help themselves and their families break the cycle of crushing poverty.

Currently, Mary’s Meals is feeding more than one million children around the world! Which is amazing, but there is still more work to be done.

Magnus McFarlane-Barrow, the founder and CEO of Mary’s Meals, spoke at the conference last weekend, and he is passionate about feeing these children, about making a difference, and it’s so simple to do. This isn’t a hard thing. They will do anything to get these kids food; in Haiti, they deliver food to the foot of a mountain and carry the food up to the school settlement! Even though Mary’s Meals is dedicated to Mary, the Mother of God, and Magnus is Catholic, the schools serves everyone, not just religious schools.

This Lent, I think it’s a great idea to support Mary’s Meals however you can. Maybe you eat a simple meal and save the money you would’ve spent on going out—do that once a week, and at the end, give the money to Mary’s Meals. Maybe you can hold a bake sale or a fundraiser at your school. There are lots of ways to help!

Donate right here. Think about it. $20—a movie ticket and a soda, or an entree at a nice restaurant—that can feed a kid for an entire year. That makes a huge difference in a child’s life.

To find out more, watch Child 31, the documentary about Mary’s Meals:

And the follow-up, Generation Hope:




And if you like the actor Gerard Butler, like I do (he was in The Phantom of the Opera!), then you’ll love this video of him directing kids in Haiti at a Mary’s Meals school!












Be Like Briony! (Or: Disability and Reality TV)

essaysEmily DeArdoComment

So, I love the Great British Bake Off. Do you? :)

(For those of you who have no idea what it is: 12 bakers in Britain bake three challenges every week—two they can practice, one they can’t—they don’t even know what it is. The bakes cover pies (their pies, not American pies), cookies (biscuits in England), bread, patisserie, all sorts of things. At the end of each week, one person is “Star Baker” and one person is sent home.)


Anyway, I was watching the 2018 Bake Off on Netflix over the weekend, and I was super happy to see Briony, one of the contestants, on the show. Why? Well, first, she’s just great, but second, because she has a disability and she didn’t make hay about it!

She has what she calls a “little hand”—it’s a birth defect where she only has six fingers:

Explaining why she and Channel 4 chose not to mention what she has dubbed her “little hand”, the 33-year-old said: "I specified early on that I didn’t want them to make a big deal out of it because I just wanted to see how people would view it".

Williams went on to say that her disability is “a part of me, not all of me” before adding: “It’s not that I’m embarrassed about it or ashamed of it in any way. I want to be there on my own merit and I don’t want people to think that I’m getting special treatment.

Think about this. BAKING! With six fingers!

But what I love is that it’s never mentioned on the show. Never. She just bakes. She doesn’t use special equipment, there aren’t any “special moments” where she has a tender music fueled close-up where she talks about “overcoming”. She just does her stuff! And it’s great stuff!

When I was on Jeopardy! I didn’t really want to talk about my transplant. But….I did. Because that was the most “interesting” thing about me, apparently (eye roll). And they did make accommodation for me—but I didn’t ask for it—they did it in the interest of fairness, because they wanted to be scrupulously fair. So there weren’t any video categories for my game, or any music clues (even thought I might have done OK with that!).

The reason I like this so much is because I HATE a lot of reality TV—especially the talent/singing shows, where the singer comes up and does her bit and then spiels all about her issues.

Look. THIS DRIVES ME NUTS. I have always wanted to be judged solely on my abilities. I would never enter a contest and then pay the pity card. EVER. I didn’t do it for Jeopardy!, I don’t do it when I audition for shows, I don’t do it, period. Because I don’t want to get pity. I want to get respect for what I can do. So when I see people talking about how “Oh, this person with X was crowned Homecoming Queen!” or “this person with Y is on X Factor!” I want to scream. Because it makes it sound like that person only did these things because of pity. Not because of their excellence, their human qualities, their goodness, etc., but they become like side shows. “Oh, look, this person can be like anyone else!” these shows croon. Whereas Briony (and I hope, me) just go out and do it. We don’t have to draw attention to it. It just is. Not everything has to be a Special Inspirational Story of the Day!

Briony is my sort of person. She has an issue, yeah. But I mean, it’s not her whole identity. I’ll tell you I’m hearing impaired. Blog readers know it. But if you met me in actual life, you might not know. The people on Jeopardy! didn’t know until I told them. That’s how I like it. If I need accommodation, I’ll tell you. But I want to be judged on my merits, not on the pity you feel for me. I do not want pity votes.

Briony got on the show because she’s a kick butt baker. And that’s what matters!

Vulnerability and Community

essaysEmily DeArdoComment
Jules Adolphe Breton,  The Song of the Lark

Jules Adolphe Breton, The Song of the Lark

I am really, really bad at being vulnerable.

Meaning: I don’t like to ask people for help. I’m terrible at it, really.

I have the sneaking suspicion that a lot of women are the same way.

But lately I’ve been thinking about this: we need each other. We need community. As so many things do it reminds me of In This House of Brede, where Lady Abbess tells Philippa, “You need the community,” when Philippa is trying to pray for something on her own.

We need community.

So why don’t we ask for it?

Are we embarrassed? Our house is a mess. I don’t want anyone to think that I can’t do it myself. Etc.
Are we afraid that people won’t help us?
Are we afraid that people will judge us? Oh, I was at so and so’s house yesterday and OH MY GOSH…..

I don’t know about you, but I’m honored to help people. I like helping people.

I don’t care what your house looks like. I’m coming to see you, not photograph your house for Architectural Digest.

What do you need? Do you need someone to grocery shop for you because the kids are sick and you can’t get out? Do you need someone to watch the baby while you shower? Are you just overwhelmed and you need someone to vacuum while you start the dishwasher so you can feel like you’re making some progress in your life? Do you need someone to listen, and pray for you?

Community should do all those things.

In 2001, I was in the ICU for two weeks, and in the hospital for a little over a month, total. I came home in time for Thanksgiving. My brother was with the band, performing in the Macy’s parade—a bigger event than usual that year, since it was right after 9/11, and each band member marched in honor of someone who died that day. Since Bryan was gone, and Thanksgiving was never a big deal in my family, we were just going to watch the band and have something heated up from the freezer.

But while the parade was on, a woman came to the door from our church. She brought us a Thanksgiving dinner. She knew that, since I’d just been released from the hospital a few days ago, Mom probably hadn’t bought the ingredients, we probably weren’t planning on cooking. So our church friends gathered around and brought us the meal.

That’s community.

It doesn’t matter if someone is having their first, fifth, ninth, fourteenth baby. We should bring them meals. We should rejoice in this new life.

We should want to cultivate relationships that allow for vulnerability, for people to feel safe asking for help.

Do you feel safe, asking your friends to help you? I hope so.

I wasn’t planning on writing this, but it seems important to me, now more than ever, maybe, to want to encourage this. Step in, step up, and be community for each other. Help each other out, whether it’s just listening over a pizza or a cup of coffee, or sending a card, or helping someone with their dishes and vacuuming when they’ve had a rough week, or holding the baby so mom can get clean for the first time in a week.

As Christians, we’re supposed to love one another. Part of love is service. Let’s not be afraid to be vulnerable, and to be community for each other.

Burdens

essays, family, life issuesEmily DeArdo1 Comment

Kelly at This Ain’t The Lyceum wrote a great piece about how everyone is a burden to someone at some point in her life. It’s not just people who are disabled, or poor, or old, or whatever. ALL of us were, or will be, a “burden” to someone.

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One of the things you hear when people talk about assisted suicide is that they don’t “want to be a burden” to their loved ones. But think about it. Babies are inherently a burden to their parents. They can’t do anything for themselves. We all started there, and we’ll probably all go back there as we get older.

This touched me specially because I had a call with a “disability caseworker” last week, and I’m working through the SSDI application process. This entire process is dehumanizing and humiliating. It boils down to what you can do, and strips away anything else. So at the end of this call, which involved both my parents, I burst into tears.


“Why are you crying?!” My parents asked.

“Because these things are so humiliating. I feel like such a burden to everyone, I can’t do anything, you guys are just stuck with me forever! No one wants me!”

“We want you,” my parents said.

And then they reminded me that they really did want me. This wasn’t just parents saying what they’re supposed to say (like when you ask your boyfriend if a dress makes you look fat. There’s a right answer to that question.).

My parents really wanted me. They prayed hard for me. They got married in 1979 and I didn’t appear until 1982. My mom always wanted to be a mother. They prayed hard for me, and, in an example of God taking people seriously, Mom had said in her prayers that she would take a baby who needed extra care, because she knew she could love and take care of that baby.

And believe me, she has. The things my parents have done for me would take a really long time to explain, but here’s just a bit of it:

  • Many, many, MANY ER runs (One during the Super Bowl, when the Steelers were playing. My parents are huge Steeler fans.)

  • Monthly blood draws when I was a toddler.

  • Driving to Cleveland in a snowstorm for an appointment.

  • Many many many overnight hospital stays

  • Learning how to reconstitute medicines and give them via an IV, even 8 or twelve hours—yeah, that means middle of the night stuff. WHEEEE!

  • Beating on my chest twice a day, every day, as part of daily CF therapy (now that’s not really needed, there are inventions that take care of it, but back then, not so much).

  • Many insurance phone calls

  • Learning how to dress a third degree burn, and then doing the dressing at the kitchen table, which was just par for the course at our house.


It’s a lot. And I’d be lying if I said I never felt like a burden to them, because I do. Our society makes it clear of what it thinks about “people like me”. I’ve had people tell me, to my face, that I shouldn’t exist. That’s sort of hard to deal with. And as I get older, I get increasingly sadder about this fact that I’m not married, so my parents have to handle everything for me, because I don’t have a husband to help out. (Not that every husband would help out….)

But really, Kelly’s right—we’re all burdens. We just are, it’s part of being human. We depend on each other. Think about it. Even a “normal” kid needs mom and dad’s helps. Even “normal” adults need help every once in awhile. We can’t do everything ourselves, it’s just not possible.

But we see this as being wrong, and as something that needs eliminated. Sure, we all want to be independent. I am very glad, for example, that I can use the bathroom by myself, because having gone through periods of my life where I’ve had to wait for a bedpan or three nurses to help me, I do not take that ability for granted. But you know, there are times when I haven’t been able to do that, when mom has had to wash my hair, or Dad has had to call AAA because I can’t call them.

It can be a lot. It can be humiliating, and it can be depressing. As a society, we need to really focus on the person, because we are all God’s chosen people, in that, God willed us into existence. This is my existence.

I’m glad that I am independent, in some ways. I’m glad that I don’t need to rely on my parents for everything. But at the same time, I know that even when I have needed that, they’ve answered. And I know some parents don’t—I don’t know them personally, but I’ve seen them, I’ve heard the horror stories. I’m lucky.

People are people to be loved, not to be called burdens or dismissed because of it. Really, we could all be burdens to God. Think about how slow we are. I mean, doesn’t he ever sit up there and just facepalm? Seriously, humanity?! WE COVERED THIS!!!!!

But God made us anyway. People love us anyway. Our worth isn’t about what we can do or what job we have or anything external. Worth is internal.




Re-set for Advent

Catholicism, essays, journalEmily DeArdoComment

Does this week seem weird to anyone else? Like, there’s all this extra time? I’m so used to going right from Thanksgiving into December that this week has been throwing me off. Don’t get me wrong, I like the extra time, but it means that everything is being done early chez moi. For example, I usually send out my Christmas cards after Thanksgiving—I actually mail them on Thanksgiving, usually—so having them arrive at places before December 1 hits is just weird this year.

Decorations at my  parents’ house—this is the front hall.

Decorations at my parents’ house—this is the front hall.

My shopping is done. I’m mailing out the gifts that need mailed and the things that need wrapped need wrapped. I’m not a great wrapper so I tend to delay it for as long as possible. :)

Thanksgiving was quiet, which was nice, because Christmas is nuts in my family. We have our big family reunion two days after Christmas, and then I’ve got friends coming home for the holidays so I want to spend time with them, and it’s just a big joyful crazy time, which I love.

With the “extra'“ time this week, I’ve been doing a bit of a reset. I read about reset days here (yes, it’s a guys’ website, but it’s good info!), and on Monday, I decided to do this. Being knocked out for two weeks because of Crazy Med made me lose a lot of time in November and I’m still not completely caught up on things like housekeeping and my NaNo novel but it’s all good.

So I used the “reset” day to reset before Advent (I like how that rhymes, too). Cleaning the house is part of it, but also getting ready for Advent—decorating the house, putting out the wreath, things like that. Making a big to-do list was really helpful.

An ornament I made in 8th grade art class.

An ornament I made in 8th grade art class.

I love Advent. I love the sense of preparation, and December is really the only time of the year that I like snow. Every other time it’s sort of meh. (That’s putting it mildly)

But I like the New Year aspect of Advent, too, because it is the new year for us, and I like the freshness, the starting over, the hope that comes in Advent.

So if you need a reset day too, you’re not alone. Let’s get ready for a new year, a fresh start, and the coming of the Baby Jesus!





On My Soapbox: When people say they want "healthy" kids

Catholicism, CF, essays, health, life issues, transplantEmily DeArdo3 Comments

and some theology

I know that when most people say they want a “healthy baby”, they’re not being rude or mean. They’re probably trying to be nice.

But guys, I wasn’t a “healthy baby.” I looked healthy, initially, but I wasn’t. I had seizures. I had (and still have) thalessemia minor (I think it’s called type b now? Not sure). I got the CF diagnosis when I was 11.

So, should my parents have just pitched me back? “Nah, sorry, we wanted a non-defective model.”

And I know that people do that now. People kill their babies in the name of the kids “avoid suffering” in their lives. Bull crap. “Yes, let’s kill you, so you never get to have a life.”

That ties into part two: saying “God is Good” only when things go the way you want them to go.

Guys. God is good all the time. He is Good. It is in His very nature to be good. But that doesn’t mean that God’s Goodness=what you want.

Because it doesn’t work that way.

God created me with my “defective” genetic code and my blue eyes and my blonde hair and my fair skin and my wonky teeth and an ankle that cracks oddly. I have a really good memory and I love children and I do a pretty good Sebastian the Crab imitation. I have The Phantom of the Opera libretto memorized. (And Les Miz. And Miss Saigon. And Ragtime. And Parade…)

And yeah, I also have CF. I had a transplant. I’ve got scars. And I do talk about it, because it has become clear to me that it has to be talked about, because people see illness as scary and something to be avoided and pain as awful, to the point that Canada is allowing pediatric euthenasia.

God is always good. And God made me the way I am for a purpose. Is it always fun? No. It is not. There are times when I’ve been really peeved about it, to put it mildly.

But at the same time, it has made me who I am, and in general, I like who I am. I wouldn’t want to change that for the world.

God is not being “mean” to me. He created me the way he wants me to be.

And health doesn’t always stay health. Health is a transient thing, guys. Everyone will get sick. Everyone will die. It seems that in our society now we are idolizing life and health to the point that it is fully unhealthy. We’ve forgotten that we will die, that life is fleeting, that our home isn’t here.

Children are a gift from God, no matter how they come.

And God is always good. And He always loves me.

He always loves you, too. No matter what.

As [Jesus] passed by, he saw a man blind from birth. His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” Jesus answered, “Neither he nor his parents sinned; it is so that the works of God might be made visible through him.”

John 9: 1-3, NABRE

What people say

journal, transplant, essaysEmily DeArdo1 Comment
Roses outside the parish priory

Roses outside the parish priory

I was reading one of Nie Nie's recent posts, and it got me thinking. 

Like her, meeting new people can make me nervous. There's a lot to explain. If I go out to eat with a good friend, they know my "I don't understand please translate" look I give when the waitress is talking. New people don't.  My friends know that if I miss something or mishear it, that I didn't mean to do it, and they'll correct me and we'll move on. New people don't know these things. 

New people also don't know why my arm is scarred up. Like Nie, I was burned--not nearly as badly, thank God. But, people ask about it. It's not "normal."

Some people think that "nice people" don't ask rude questions. They do. 

I was asked to show someone my transplant scars in the middle of an office. They're underneath my breasts. Not happening. 

I've been asked what happened to my arm when I'm buying moisturizer and toilet paper at Walgreen's. Recently, a checkout clerk asked me what happened to it as I was digging out my wallet. 

"I was burned during surgery." That's all I wanted to say. People are not owed my whole story just because they're curious. 

But this woman wouldn't stop. "What hospital was that at?"

I didn't answer. I slipped my card into the reader. Fortunately, by this point, there was a woman behind me. The employee continued chattering at me as I finished my transaction. 

Why do people do this? Because they're curious? They probably don't mean to be rude, but they certainly didn't think before the words left their mouths. 

I don't mind little kids asking me, because they really don't know better. Adults do. 

You're not entitled to know everyone's story. My life and its intimacies aren't your personal fodder. It's like touching a pregnant woman's stomach. That's just wrong, man. It's not yours to touch. 

I write here. I talk about my life. I want to do that. But that doesn't mean that when I'm buying toilet paper I want to go into the details of transplant and skin grafts with you. And honestly, people aren't owed that information. 

People can be crazy rude. And it hammers home the point that, yes, my arm looks weird. But if you want to talk to someone you don't know, compliment them? Say they have great eyeliner or their shoes are a fun color or something. Don't say, hey, why is your arm funny? Why are you in the wheelchair? Why don't you have any hair? 

I don't mind talking about it, but I don't like it being pointed out like it's some sort of freakish wonder. There's a difference. 

 

 

Sage's Shawl

CF, essays, yarn along, knitting, journalEmily DeArdo1 Comment
IMG_7571.JPG
IMG_7575.JPG

Yes, it's Wednesday. It's a yarn along post. But....not really. 

When I finished my first Drachenfels shawl, I knew I wanted to knit it again. My head was full of color combinations and possibilities. In May, I ordered a special edition yarn from Quince and Co (carnation--the pink above) and knew I wanted to use it in this shawl. The question was--what to pair with it? 

When I went to Sewickley Yarns in July, I brought the ball of carnation yarn with me so I could color match. Immediately, I latched on to the green color you see above. And then I checked the tag. 

It's called "Sage". 

Then I knew I had to have it. 

Some of you may remember my friend Sage, who died two years ago Friday, waiting for a double lung transplant. Like me, she had CF. And we had so much in common besides that. She was a true kindred spirit. We spoke (well, texted) almost every day. She was funny, supportive, deeply faithful, and just....well, a perfect friend. 

We never got to meet, but we had made plans for it...in that nebulous future moment of "post transplant", the transplant I was just so sure she'd get. 

She didn't. 

I think about her almost every day. I think of things I want to tell her and then I realize I can't. 

So when I saw the "Sage" yarn, I had to get it. And then I had to get the purple (Frank's Plum), because purple was her favorite color. It's also the color for CF awareness. 

I wish I could give her this shawl. I think she'd like it. I know she'd love the purple. I dunno how she felt about pink. But since I can't give it to her, I make it for me--and when I wear it, I can remember her encouragement, her sense of humor, her strength (really, she was so much stronger than I am. Anyone who gets a chest tube put in WITHOUT ANESTHESIA is MUCH stronger than I am.). 

Some people, post-transplant, talk about living for their donor. I never felt that way. My donor was a lot older than I was, for starters, so it wasn't like she was a compatriot in age. But after Sage died, I do get the feeling that I'm living for her. That I do some things because she can't. It's hard to explain. 

I'm at the halfway point of the shawl. For the rest of it I'll be working with the pink and the purple intertwined together. I should finish it within the next few weeks, which means I can wear it this autumn. 

So, if Sage was alive, I'd give this to her. But since she's not here, I'll wear it for her. 

Thirteen

CF, family, essays, organ donation, transplantEmily DeArdoComment

The annual transplant anniversary post tends to change, in form and shape, every year. This year, a lot has happened: 

Catholic 101 was published in November (buy it here--on sale until Friday!) 

My brother got married

(c) Erica Kay Photography , http://ericakayphotography.com/home

(c) Erica Kay Photography , http://ericakayphotography.com/home

 

My sister got engaged

Melanie and Jason (her fiance) leaving Bryan and Sarah's wedding (c) Erica Kay Photography, http://ericakayphotography.com/home

Melanie and Jason (her fiance) leaving Bryan and Sarah's wedding (c) Erica Kay Photography, http://ericakayphotography.com/home

I saw the Stanley Cup with my parents

I went back to Williamsburg and Duck 

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I started writing and editing for Take Up & Read. 

I celebrated my grandma's 88th birthday with my family

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I knit my first shawl. 

 

None of these things would've happened without my donor. 

It can be tempting to look at life in terms of productivity, what we do,  and I'm not trying to list my productivity. Look at what I've done! Rather, it's more like, these are things I never would've done, enjoyed, even conceived of, thirteen years ago. These are things that never would've happened. 

I would've missed my brother's wedding. 

I never would've met my new future brother-in-law and sister-in-law. 

13 birthdays, Christmases, holidays....all those things would've passed without me. 

In general, women post-transplant don't do as well as men. There isn't a lot of data, period, on women who have survived a transplant longer than 10 years. I'm in new territory here. 

I try not to think about that. 

Instead, these things I get to do are gifts, even when life is sort of sucky, because life is never totally perfect. I mean, things are overcome, yes--but just because something is overcome doesn't mean that everything is suddenly perfect. It doesn't work that way. 

Someone said, life is full of suffering, but it is also full of the overcoming of it. 

And that about sums it up. 

Thirteen years of overcoming is pretty good. 

With the cousins on my mom's side at my brother's wedding. This is not all of them, btw! 

With the cousins on my mom's side at my brother's wedding. This is not all of them, btw! 

To be an organ donor, go to donatelife.net/register

"Even crazy people like to be asked"

essays, health, hearing lossEmily DeArdo1 Comment

Another thing that’s connected to depression is hearing loss.

Yup. Not making that up.

A study by the National Institute on Deafness and Other Communication Disorders (NIDCD) shows that more than 11 percent of those with hearing loss also had depression, as opposed to only 5 percent in the general population. Depression was most prevalent in those between the ages of 18 and 69.

“We found a significant association between hearing impairment and moderate to severe depression," said Dr. Chuan-Ming Li, a researcher at NIDCD and the author of the study. The study does not confirm the nature of the cause-and-effect of the connection.

 And this is very true. If people don’t include you in conversation, if they ignore your needs, then that is very frustrating and adds to depression, because you feel worthless and ignored. It doesn’t matter if people are really ignoring you or not--it’s the perception that’s important here. Depression isn’t logical.

 So if you have friends and family members who are hard or hearing or Deaf, please include them. Please ensure that they get what they need and help them with conversations. We’re not being difficult, really. We just want to know what’s going on! It’s exceedingly frustrating.

Imagine that you’re sitting at a table full of people--friends, family--and everyone is talking and happy around you. Now, imagine that, instead of hearing what they’re saying, you hear Charlie Brown’s teacher’s voice. Or screeching cats. That’s what it’s like. It’s noise.

Now imagine if you ask people what’s being discussed and people ignore your request for information. How would you feel?

You would feel very frustrated and very small. At least that’s how I feel.

Chronic illness, in general, has links to depression.

“Current research suggests that he relationship between depression and other medical illness is bidirectional. Depression increases a person’s risk for developing of number of medical illnesses and also worsens the prognosis of those medical illnesses; medical illnesses put a patient at higher risk of developing depression.” (The Catholic Guide to Depression, page 29)

So, if you have a friend or family member with chronic illnesses and depression, it is really helpful to include them--to be inclusive--but it’s a fine line when it comes to helping.

The person has to be open to wanting help, yours or someone else’s. Check ins, for me, are appreciated--ensuring that I’m taking care of myself as well as I can (getting enough food and sleep), reminding me to clear the decks if at all possible. Listening can be very useful. There really isn’t much that can be said in regards to things family and friends can do, which is frustrating, I know. Essentially, being there, checking in, and ensuring inclusion are always helpful. (For me. That doesn't mean that I won't get irritated--like, what, do they think I'm five and I can't handle things myself? But I know your intentions are good!) There are things people can do--bringing food, or helping with chores. I'm single, which means that it's easy for me to get alone time, but it also means that I am responsible for everything in my house. I don't have a spouse who can help me take care of the day to day things that still happen when you're sick or otherwise out of commission. 

There’s a scene in the movie The Hours which sums up the concept of asking beautifully. Virginia Woolf, having been sent to “the country” for her health (Virginia struggled with many mental illnesses), is sitting with her sister, Vanessa, in the garden of Asham House, Virginia’s home. Vanessa is talking about a party she had, to which Virginia had not been invited, and Virginia has asked why she wasn't invited. 

“Are you not forbidden to come? Do the doctors not forbid it?” Vanessa asks.

Virginia looks at her sister for a moment. “Even crazy people like to be asked.”

virginia and vanessa.jpg

 


 

The Big Bad Wolf

CF, essays, health, transplantEmily DeArdo2 Comments

I’ve had depression and anxiety issues since I was 15 years old.

Maybe I was born with them and just never really had an episode until I was 15, and I had a TB diagnosis that came really late and almost killed me. “This is just what CF is,” said a doctor in my CF clinic. But when I started coughing up blood, my regular doctor decided to look a little deeper, and she found I had non-infectious TB, something that only 4% of the CF population ever gets.

So it was a brush with death that hit a little close to home. TB is called “consumption” for a reason. It consumes you. The meds made my stomach hurt so much that eating made me cry. I cried thinking about eating ice cream. Who cries about eating ice cream?

The TB seemed to awaken this depression and anxiety in me. I became afraid of the dark. I had no energy, no interest in anything. It was the only marking period in my high school career where I didn’t make the honor roll (and you needed a 3.0 to make the “basic” honor roll). I stopped voice lessons.

I don’t know if many of my friends noticed, but it took awhile to get over the feeling of intense worry and doom (and that’s not too strong a word) that hung over me. As spring and summer came, I slowly got better, both physically and mentally.

Of course as my body recovered, that helped my mental health recover too. The two are linked. But what also helped was my fabulous doctor discerning that I probably needed some additional help, in the form of both a psychologist and medication.

She approached it very gently and made it clear that it wasn’t a mandate, it wasn’t that something was “wrong” with me or that I was “crazy.” She thought that it would be the best way to keep me healthy going forward, and she was right.

I’ve seen my therapist regularly ever since--that’s more than twenty years now, with the same woman. She’s not allowed to retire, ever, basically.

But I’ve also taken medication. It’s changed, over the years, because of drug interactions. But I need it--I can’t go off it, or I get a little unhinged.

I should probably describe what “unhinged” means for me. It means that I start worrying about everything. I feel like I’m a burden to everyone, that nothing is going to go right, that my body is my enemy. I have trouble breathing and have a lot of chest pain. Now, as I say that, I can differentiate between the Big Bad Wolf of anxiety/depression as opposed to the chest pain and troubling breathing of a pneumonia or lung infection. They are different, and I can tell said difference. Some of that is just being older and learning how my body reacts, and what else is going on.

If it’s emotional, then I’ll be very withdrawn. I won’t want to go out. Everything will be much harder than it should be. I will be cranky and cry at the drop of a hat.  I won’t want to leave my house, get dressed, or do anything other than sit on the couch. I won’t even want to read.

It’s not good for me to be in my head that much.

And the other thing I’ve noticed is that most people get seasonal depression in November/December. For me, it’s right now--it’s June/July. This time of year is not a good time of year for me. Maybe because I’ve had a lot of home IV bouts, hospital stays, and work stress in early summer. Last summer I noticed this for the first time….I really don’t like June and the beginning of July. But after the beginning of July, around my transplant anniversary, things start to lift.

I don’t know if it’s PTSD or what. I hate to think it is PTSD because I honestly don’t think of my life as traumatic. But whatever it is...I know it now.

So I’ve talked to my doctors and we’re upping my medication dose for a little while, until I get over this patch. It’s helping already--so that was fast.

I don’t react well to lots of stress, either--so when you combine stressful events PLUS this time of year, it’s really not great.

And part of it is I need to be less nice. I need to stop worrying about making everyone else happy and worry about making myself happy, or, at the very least, healthy. That’s gotten me into trouble before, the idea that I have to do everything even when my body says no. I have to stop letting other people’s expectations dictate what I do--and that’s a lot easier said than done.

I hate to let people down. But at the same time, if I was honest with people, then I bet they wouldn’t want me to run myself into the ground and into the black hole for them, because there’s nothing I do that’s really that important. Let’s be honest. I’m not running the world here.

That’s one thing I want to say to people who struggle like I do: life is not an emergency. (Thanks, Ann Voskamp.)

You are not running the world.

If you have to take a day off, you can do it.

But you have to be vulnerable and tell people that.

And that is hard.

I know it’s hard.

I’ve wanted to write this for awhile, but I’ve been afraid of what people would think or say or how they’d view me.

But you know, we need to be honest, guys.

We need to bring this stuff out into the open.

There are not enough people talking about depression and anxiety and how we just deal with it every day.

We talk about cancer and everything else, and I talk about my transplant.

But sometimes we need to talk about this stuff as well.

Because it happens to everyone--those with faith, and those without. Single and married. Poor and rich. Every color, every race, male and female.

So, here we are.

I’m writing about it.

And I hope that this helps someone, even marginally.

I look really happy most of the time. But that doesn’t mean I am happy.

Sometimes it’s all too much and I need a break, but there’s a difference between a break that I call for rationally, and a break that is imposed because my mind is going five million miles an hour and I just need to clear the decks.

In fact, that’s a good description of what my medication does. It helps me clear the decks and be rational and logical and awesome.

I think I’m going to write a few posts about this. This one is a good starter, a good ice-breaker.

The take away is this: Get help. Ask for help. Be honest and vulnerable, and you’ll be surprised at how people will support you. (If they won’t support you, then you don’t need them in your life. Full stop.)

For me, this was the hardest part. Being vulnerable is NOT something at which I am good.

But it’s worth it.

Medicine Is Good

essays, healthEmily DeArdoComment

It seems baffling that I have to write this, but here we go.... :) 

Medicine is good. 
Doctors are good. 

There are too many people out there who are willing to lure people into the trap of "medicine is a scam, you don't need medicine, you need holistic, natural, chemical and toxin free things and then you will be SO HEALTHY! We can eliminate disease! We can get rid of drugs! Yayyy!" 

Guys. 

No. 

OK, first off--everything is a chemical. Water is made of chemicals. Chemicals are not bad. You are made up of chemicals! 

Are some doctors way too quick on the trigger to prescribe meds that people may or may not need, for conditions that may or may not need treated? Sure. We see this all the time with high cholesterol meds. Our bodies need cholesterol. Cholesterol drugs can cause a lot of harm to the body, especially to women, who were not studied when these drugs were tested.

For example, I have high triglycerides. I always have. My grandmother has them. My mom has them. We do not have any heart disease, or history of it, amongst the women in our family. When I was prescribed Lipitor after my transplant, I took it--and then my body rebelled. I had incredible joint and muscle pain. There were days I could barely move. All I wanted to do was sleep. Turns out, statins can cause lots of damage to joints and muscles. So I told my doctors, we can either have me take a drug that's not doing anything, or you can have me moving and productive. You cannot have both. 

You have to know yourself, and your history, and the risks of medication. What is high blood pressure--I mean, numerically, what is it? It's changed lately. Why? What's the rationale for that? Does it really need to be treated with a pill? Maybe, maybe not. It depends. 

But let's stop saying that we can rid the world of disease "if only" people would eliminate toxins, stress, chemicals, etc., etc., etc. That's not plausible. There are certainly ways to reduce stress and toxins. But eliminate them? I don't think so. 

I remember Mike Huckabee saying that if people just ate right and exercise, we could get rid of disease. 

Guys, that's not true. 

Drug companies make drugs that save lives. Doctors are awesome. Without drug companies, I'm dead, and so are a lot of other people. (And yes, they also make drugs that make life more pleasant, in general. Not everything a drug company produces is life-saving. I know that. :) But the popular drugs are what fund the R&D for the not so popular ones, like the immunosuppressants I take, or CF meds, etc.) 

There is no way I could cure my CF by living "holistically." It's not possible. Sometimes, you need meds, and you need things taken out of your body. Sometimes, we need modern medicine, which, on the whole, is a great thing

Sure, you can try taken gluten out of your diet, or yoga. I love my yoga. I do eat less gluten than I used to. But there are some things that require medication, and that's not a bad thing. Drugs are not bad. They shouldn't be vilified. They are a tool to be used when they need to be used. (This is especially true in the case of anxiety and depression. Guys. If you are anxious or depressed, and you're doing other things already, then adding a drug to the mix might be very, very helpful. Do not feel ashamed! Seriously. Do not.) 

So let's use meds, when we need to. Let's stop saying that, "oh, my cancer went away and I didn't do chemo. So, you know. " There's an implication in these statements that medicine is somehow the weaker option, the easier option, the lemming option. 

Look, if you have cancer and it "went away" with diet and exercise, OK, great for you. Fine. But that's not something most people should do, OK? Most people need chemo or radiation or surgery, or all three. They just do. That's the first-line treatment for a reason

If you want to watch and wait on treatment, again, as long as you're doing it prudently, great. ** But I roll my eyes whenever I see people say that some magical thing is going to save the the world and cure everything. It's a modern version of selling snake oil.

If you have serious medical issues, then you need medical care. You can certainly use complementary therapies. They are useful and, often, helpful! Medical massage is a wonderful thing. Mindfulness practices, body scans, TENS units, even hypnotism--other therapies are great (Music therapy, art therapy, etc., etc.). I will diffuse lavender oil if I'm really stressed out, and I drink valerian tea every night before bed. Ginger tea is great for nausea, and peppermint tea can help with headaches. There are things that are good about the natural world and we need to use those too. When I was really nauseated post-transplant, the pharmacist suggested gingersnaps, instead of anti-emetics (although we did use those, too.), because ginger helps settle the stomach (as does garlic, coincidentally).  It's good to know and use these things.

Combine approaches. Neither side is totally good or totally bad. There are bad parts of the medical establishment. I've met them. I know they exist. And I try to help you avoid them at all costs! :)  But I roll my eyes and get angry when I see people refusing to use the gift of modern medicine, of antibiotics, of vaccines, of treatments, because they think it's impure or dangerous or not needed or whatever. 

Do what you can to reduce stress and get good sleep. Eat well. We should all eat less sugar. Move a little. You know--the basics. But then, if you're doing these things, and you still have problems or symptoms--go forth and get help. It's OK! Run it by your doctor. 

As William F. Buckley said, "Be open-minded, but not so open-minded that your brain falls out." 

 

**Just to be totally honest: I'm going to my dermatologist today. She was worried about a large freckle on my right hand at my last visit and biopsied it. It came back as non-cancerous but as weird. Now, under normal circumstances, I'd probably be OK with what she wants to do, which is Mohs surgery to remove the weird cells. But my right hand is my burned hand. I do not want to mess with this hand unless I absolutely must. First off, it's my dominant hand. I don't want to risk damaging it or even losing it. Second--and again, being honest--when you mess with burned or grafted skin, it hurts. A lot. Just banging it on something hurts. I have a high pain threshold, but i don't think I can hold my hand still while it's cut in to multiple times on very sensitive skin. 

So, I'm going to say that I don't want to do anything right now. I just want to watch the spot, and if I see any changes, I will report them immediately. I have talked about this with my parents (My Medical Council), and my transplant nurses. They are all OK with this approach. So it is prudent, for me. So, I am taking my own advice here. :) 

 

Stop waiting around

CF, essays, transplantEmily DeArdoComment
Trivia night victors! 

Trivia night victors! 

Guys. Stop waiting to do things. 
I see this a lot with transplant people--or people with CF--but also with people who are just nice, normal people. 
"Oh, I'll wait until later to do that."
"Oh, someday...."
"Oh, it's just not right right now."
Guys. 
If you want to go to school, go. 
If you want to learn something, learn it.
If you want to bake cookies all day, do it at least once.
If you want to learn Spanish, sign up for Duolingo. 
STOP WAITING.
Stop saying, Oh, when this happens. 
Nuh uh. 
DO IT NOW.
Yeah, sometimes it's not plausible. I get that. Sometimes you have to save money. I get that too. 
But then DO IT. Save the money. Make it happen. Dedicate yourself to it. 
Don't wait. 
Don't use your body as an excuse not to do things. "Oh, I have crappy lung function, I can't go to school, I can't work, I can't do anything by lie here and watch Netflix."
I've been there. Before my transplant, I slept for 13 hours a day. Seriously. If not more. When I was "awake", I was sort of zombie-fied. And that's what happens when you're close to death. 
But EVEN THEN--I went to work. I went out. I saw my family and friends.
Yes, when life changes, more opportunities can open up. 
But you will lose your life waiting around for things to happen. 
So STOP IT. 
Learn the things. Do the things. LIVE YOUR LIFE. Even if you're almost dead, you can STILL LIVE YOUR LIFE while you have it.

Things That are Saving My Life

essaysEmily DeArdo1 Comment

Anne over at Modern Mrs. Darcy frequently posts about things that are "saving [her] life right now." They're not often big things, like medicine, but things that make life easier and more enjoyable. So I'm following her lead and joining her link up. 

1) Good shampoo and conditioner

I've never been a "hair girl". I'm a makeup girl, not a hair girl. I can't even curl my own hair--I'm that hair impaired. But recently, I've been having to up my hair product game substantially. 

After I had my skin cancers removed from my scalp last year, my hair and scalp needed a lot of love. So first I was using Living Proof products. And they were great, for awhile, but expensive, although they did keep my hair cleaner. A few months ago, I switched back to regular drugstore products. 

"Big mistake. Huge!" As they say in Pretty Woman

My hair is pretty fine to begin with, but when you're missing hair (as in, the hair is slowly growing back from here it was removed), you need to pamper what's still there. My hair was a MESS. Flat and gross and fly away. So I realized I'd have to go back to good products. 

So this is what I'm using: Living Proof Timeless Pre-Shampoo treatment  (to keep what I do have strong), Bumble and Bumble Thickening Shampoo and Conditioner, and their thickening spray (which I've always used). Are these pricey? Yes. Are they more than I'd like to spend on hair care? Yes. But I hate the way my hair looks and feels when I use cheaper products. BUT--they do tend to last a long time. You don't need to use much. I can get almost two years out of a bottle of the spray, for example. 

And so, right now, good hair products are making me much happier about the state of my scalp (and it's making my hair happier, too).  

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2. Knitting

I love knitting. This project I'm working on, above, is a shawl for me, and it's all in garter stitch, which is supremely relaxing. I am changing colors, so that can be fiddly, but overall, this and Party of Five on Netflix are perfect for relaxing in the evening. 

3. Netflix

See Party of Five, above. And movies! 

4. Sleep

After some weird sleep patterns at the beginning of January, I've finally gotten into a good rhythm. I am in bed--not asleep, but in bed--at ten, and then I'm usually done reading by 11. So I'm getting good sleep which just makes me so much happier, right? 

5. Diet Coke

It is. It just so is. I love water, and I love tea, but Diet Coke is fueling a lot of my writing/productivity right now!

Speaking of productivity....

6. Pomodoros

THESE are huge. I love them. I read about them in this Ann Voskamp post, and I've applied them to my life since the beginning of this year. It's fabulous!  Basically, it works like this:  25 minutes of focused work--five minute break. Repeat this pattern four times, then take a long break of 25-30 minutes--then back to pomodoros. I can get writing, knitting, cleaning, and reading time in, without feeling like I'm slacking off somewhere or forgetting something. Truly awesome. 

 

 

Lectio di-wha?

essays, Lent, prayer, Take Up and ReadEmily DeArdoComment
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It's no secret that I love to read. I've loved it ever since my mom first read to me as a toddler; I was the kid who snuck books under her desk in school, and read while I should've been getting ready for Mass, or when I should've been sleeping. Books are life. 

So you'd think that the practice of lectio divina, "holy reading", would be the easiest type of prayer for me to practice. 

You'd be so, so wrong. 

I am terrible at lectio. 

Before I tell you why I'm terrible at it, I should probably explain what it is. As I noted, it means "holy reading." It's a way of praying using the Scriptures. Essentially, you read (lectio); you meditate on what you read (meditatio); you pray about what you read (oratio), and then you figure out how to put all that into action (actio). It doesn't sound hard, right? 

Except for me it is. 

First, there's the reading. What the heck am I supposed to read? The Mass readings? Go through the Bible chronologically, only to falter when I get to Leviticus and Numbers and lists of names and other rosters? Start with Matthew and work through the New Testament and then maybe try the old? 

And what if I read and nothing comes to me? I read, and read, and read....nope, God, sorry, nothing's hitting me. That's actually my biggest problem with lectio. I read. And I read. And nothing hits me. There's no inspiration. How am I supposed to pray with that? 

In Advent, I had a pretty big breakthrough. The Advent journal, Rooted in Hope, was a real, hard core introduction to lectio, and it helped me immensely.  

First--because there are readings given. There was a featured verse, and a few others. I didn't have to worry about what to read. 

Second--the steps were all broken down, and easy for me to see, to ponder, to do

At first, I had to re-read the passages a few times. I picked a word, an idea, that spoke to me. But some days it was harder than others. That's OK. I just kept doing it. 

Lectio also requires a bit of background--and this is hard, too. In the first step, you're supposed to do some analysis: what is actually happening in the passage? Is Jesus talking to somebody? Who is Paul writing to, and why? Who is speaking in this excerpt from 1 Kings? That's where a good Bible dictionary, or study bible, is so important (resources at the end of this post). Because this is a big key--knowing what's happening in what you're reading. 

Here's an example: The familiar reading from weddings, 1 Corinthians 13. Love is patient. Love is kind. Yada yada. We've all heard that a million times. But if you know that Paul wrote that to the Corinthians because they were fighting among each other, because there was disunity, and arguing, and strife, and confusion--doesn't it take on a whole different tone? I know it did to me. All of a sudden, Paul's letter is real. It speaks to me in the twenty-first century. Aren't we all in strife, all the time? Aren't we fighting amongst each other? Paul wasn't just writing some nice platitudes. He was giving solid advice to people in the midst of bickering and in-fighting. 

So, keeping with this example: You would read 1 Corinthians 13. You'd do the lectio on it--you'd say, oh, OK, Paul is writing to these people, who are fighting amongst themselves. Then, the meditation. How does this apply to me? Who am I fighting with? Can I apply these concepts there? Who needs more love from me? Where am I not being loving? 

Then, oratio, prayer. Talk to God about what you're thinking. Ask Him to help you apply this to your daily life (actio, the application, the action). "God, I know I need to be more patient with XYZ. It's hard for me. But I know that's what you want. I know that living that way will be a true expression of the Christian life I'm trying to lead. So when I want to swear or yell at this person, help me to be kind. Help me to be patient. I won't be perfect--but with Your help, I will try. I will make progress." 

The actio is in the prayer, right there. You are going to be nicer to XYZ--you won't snap at her, you'll keep your patience, whatever. 

You see how that works? To me, the key is the lectio. It's knowing what the text is really saying, what its implications are. 

As you know, I'm a part of the Take Up and Read team, and we've published our Lent study/devotional, Above All. (In the photo at the top) Every day, you'll get lectio passages--and notes. I did the notes, and it wasn't just to help readers, it helped me! I learned so much as I researched these books of the Bible! It's a beautiful companion for your Lent, and I'm so proud of it. It starts on Ash Wednesday (February 14!) and goes all the way to Easter. There are pages for journaling, an examination of conscience, essays, and more. And the profits will go Adore Ministries in Houston to support ongoing hurricane relief efforts! 

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If you haven't gotten your copy yet, you can get it here. If you have any questions about it, or about lectio in general, let me know! I'm not an expert, but we can figure it out together. 

Lectio resources: 

Catholic Bible Dictionary

Ignatius Study Bible (NT)

Didache Bible

 

Catholics do read the Bible! And this is how we do it--with lectio. 

 

Invisible Disabilities and the Workforce

CF, health, hearing loss, politics, essaysEmily DeArdoComment
Fun medical equipment from the 1980s....

Fun medical equipment from the 1980s....

Take a look at the picture of me on the sidebar. (If you're reading this in email, click through.) 

What do you see?

I'm not asking for an assessment of my physical attractiveness, or lack thereof. But if you just looked at that picture,  you would think, yes. She looks like a pretty typical 30ish woman.

This is what you'd be missing: 

*You can't see my cochlear implant, tucked behind my left ear. I don't wear any hearing devices in my right ear, and there's only about 20% natural hearing left there. 

*The scar on my forehead? You can see that, but you probably don't know it's from a skin cancer removal. You also can't see the bald patch on the back of my head, from another one. Skin cancer is 10x more common in post-transplant people, because of our immunosuppression. It's not because I'm fair. (And I'm religious about sun protection, anyway). 

*You can't see that I've got about 52% lung function--which for me is good. That's great! But for normal people, if it's lower than 70%, there's probably an issue. For me, 70% is a dream I will never see again, after hitting it in 1997. So imagine working without one lung. That's me all the time--and that's GREAT. I LOVE IT! 

*You can't see the burn on my right arm, which is left over from transplant surgery. Third degree burn. Skin graft. It's rendered my right arm usable--thank God I still have it!--but it doesn't have complete function like it used to. (Knitting probably helps, though, in making it stronger.) The skin is very, very delicate. It tears easily. So I can't do a lot of manual labor with this arm--and this is my dominant arm. If you were looking at me, you'd notice, but you wouldn't have all that information. 

*Oh, and I'm anemic. I always have been. Part of the paleness. :) But that affects my stamina, too. I'm used to it, now, but there are times when I need red meat and sleep--Moreso than the average bear.

 

I'm telling you all this because invisible disabilities have been in the news lately, as a part of the new Medicaid standards the administration is considering. I look pretty "able bodied", but I'm not--as any physical exam would show. I can't use a telephone--I use FaceTime, but not a real phone. If you call me, I can't understand you. You will sound like Charlie Brown's teacher. Being immunocompromised means if I get sick, there could be a hospital stay in my future. You get the flu, you stay home. I get the flu, I can end up in the hospital. I need to be more circumspect about where I go, especially during flu season. And honestly, I need to take care of my body. That means giving it enough sleep, among other things.  

So, looking at me, you can't see these issues. But they're there. And when you compare me to an average 35 year old woman, it becomes apparent. Invisible disabilities are real. Ask anyone who has arthritis, for example. Or diabetes. Or epilepsy (which I had as a kid). They're not to be taken lightly. Just because someone looks able-bodied, doesn't mean she is able-bodied. 

As a society, we need to be cognizant of that. I'm not making policy suggestions, here, but we need to be aware that there are serious disabilities that people cannot see, and that can impact ability to work. For example, I look fine. But you don't want me to be your receptionist, or ask me to carry heavy things or fix machinery on a regular (or even semi-regular) basis. And of course, I see many more doctors than average people. I see my transplant doctor every four months--I see my ENT every four months. I see my dermatologist very frequently, and I have days where I'm out having Mohs surgery, or having things removed--that takes time. I can have surgeries scheduled at the drop of a hat. Any employers who hires me needs to be aware of those things, and needs to be flexible about them. If they're not, then I'm in trouble. And my employer won't be happy, no matter how great my work is, or how intelligent I am. Without that understanding and flexibility, a job will be hard for both of us. 

I want to provide this as food for thought, when you read about invisible disabilities, or work requirements. It's not wanting to work--it's things that make working difficult, for both employer and employee. 

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Having said that, though, I don't think a person with a disability or a chronic illness should automatically go the SSDI/Medicaid route. Here's why. 

I think that being "normal", as much as you can, is good for self-image, self-esteem, and general mental health. I know that one of my biggest drivers growing up was that I was not going to be babied. I was going to be normal. That meant, doing my homework. Going to school. Taking exams. Etc. If I needed accommodation, I asked for it, but it was low-key. I finished high school. I went to college. And after college, I got a job. 

I knew that I would need a job with good insurance. So yes, if you have medical issues, that means you have to consider jobs with good benefits. It doesn't mean you can go off and join a non-profit that doesn't provide good medical coverage, OK? You have to be reasonable and logical. I wrote more about this here

I do not think it is a good idea for people with CF to sit around at home and bewail their state. First off, that would have driven me insane. Really. When I had to be home for four months post-transplant, after about month three, I was going stir-crazy. I have to have things to do. 

But--there comes a time, when yes, you can't work anymore. This happened with my friend Sage. When she was listed for transplant, she had to leave her job and apply for SSDI. That does happen. It's part of life. But I don't think--and we talked about this often, so I know we agreed here--that she wouldn't wanted to sit at home, either. 

Maybe you do. OK. But my feeling is, if you can contribute, contribute. BUT that requires having an employer that is flexible and that is willing to work with you. And I had that--until I didn't. Once that goes away, then life can get very difficult, and then it might be time for SSDI/Medicaid/whatever. If that time comes, then go for it. That's when people on the government side need to realize that we might look pretty able-bodied. But we're not. 

And also, when it comes to the Medicaid/SSDI system, a lot of the time, they're not talking disability like I have a disability. They're talking about worker's comp sort of stuff. Like, back problems. Problems with limbs, or standing for eight hours, and movement. The system isn't really designed for people who have chronic issues that aren't movement/skeletally based.  That is frustrating, because what I have is what I have. I'm never going to get my hearing back. My lung function may go a little higher, but this is pretty much as good as it gets. I'm never going to get better skin on my skin graft. So the government side of this needs to realize that some disabilities don't get better. They might stay stable--or they might radically get worse--but "better" is not going to happen.  

I know that before I had to deal with all this, I had no idea that any of this was true. So I think it's worth it to share these thoughts with people, so you can realize that when government talks about "disability", there are levels, and there are degrees.