Catching Curveballs: How to Live to An Abnormal Life

When life throws you curveballs--how to live and abnormal life @emily_m_deardo

“Normal is just a setting on the dryer.”

We’ve all heard that one, right? While it may be catchy, and even comforting, it’s not really helpful when your life goes from normal to really abnormal, especially if it happens without warning. A phone call, a doctor’s appointment–these things take only seconds to rearrange our lives.

Over the past few months, I’ve seen a lot of dear people’s lives go off kilter in the medical sense of “off kilter”. So I thought I’d share some of my thoughts on living a life of abnormality.

 

life throwing you curveballs? Here's how to deal with it @emily_m_deardo

“Normal? What does anyone in this family know about normal?”

1. You have to embrace the abnormality as the new normal. This is the most important and perhaps the hardest thing. No, most people’s lives do not involve random Sunday morning runs to the ER, or IV malfunctions at two a.m. But guess what. Yours does (or whatever your circumstances dictate).The sooner this becomes “no big deal” to you and your family, the better. This is especially important if you have kids. The kids will react much better if you are calm and treat what is happening like it’s the most normal thing in the world. Now, sometimes, this isn’t possible. But regular hospitalizations, tests, ER visits, and the like are much less scary if they feel routine.

 

2.Remain calm (at least in front of medical personnel) when you hear that your plans are about to radically change. (That doesn’t mean you can’t get upset about it. I’ve had my share of crying jags in empty exam rooms about hospitalizations I didn’t want.) However, if you’re going to get upset, do it fast, ugly-cry, and then move on.

Think about what you need to do immediately. What do you or your child need right now–medications? A favorite toy? Does your cell phone need charged? Are there people that you have to meet with later today, and now that’s going to be impossible? Write a list, call people–whatever you particularly need to do right away, do it.

(I tend to think the following: I need my CI battery and charger. I need my glasses, contact case, and solution. My meds are mostly in the hospital formulary, but some of them aren’t, so I need the bag of meds brought in so I can give the nurses what I need to take and they can put it in my med drawer. I will need the charger for my phone and iPad, which is plugged into my computer, and I’ll need the wall charger, which is in the other bag. Etc.)

When I first heard about transplant being an option for me, I had to admit, I was FREAKED. I had no idea this was actually something that I had to think about now. Thinking about the immediate things I needed to do with this information was much less scary than letting my imagination run wild.

 

3. Be upfront with important people in your life. When I worked, I told my bosses, this is my medical situation. There are times when I may be out of the office for long stretches. I cannot control when this happens. I will update you with information when I have it. This means that there have been calls from ERs to my bosses. If you’re a parent who has a child who’s sick, and you will be missing a lot of work, I suggest you talk to your bosses and get really familiar with your leave options.

 

4. Talk to Patient Accounts at the hospital. Really talk to them. They are your friends! Use the resources that are available to you. If there’s a social worker handy, it can’t hurt to talk to said person and see what’s there for you and your family to use.

 

5. For parents: treat your children as normally as possible. I really, really, REALLY cannot stress this enough. Do not give them the mindset that because they have health problems, they are “super special” and don’t have to do homework or are entitled to things that other kids don’t get. They may need accommodation. That’s one thing. And they may get more toys, etc. because of their hospitalizations. OK. But telling them they don’t need to do homework or whatever because they’re “in the hospital” or “sick” or whatever is not helpful and not good for their development.

I always had to do homework. When an IV bled out at 2 am the night before my Algebra II final, I didn’t get to skip the final. I took it later that same day. If I’d have been admitted to the hospital, I’d have taken the final when I could, or we would’ve made arrangements. I never got out of schoolwork.

 

5. Be prepared, but don’t be Eeyore: Obviously, expecting that things can happen, and being prepared for them, is a mental help. But don’t be overly freaking out. Don’t think that everything is catastrophe, or feel like you cannot plan anything because who knows what is going to happen. There will be seasons of life where things need to be readjusted–holiday plans, vacations, etc. But there are also times when everything’s fine.  You have to ride it like you’re surfing. Do not let worries control your life, especially if you’re the parent. Your kids can sense this. Really. And it just makes them tense up and freak out because the parents are worrying about me so there must be something to worry about. For example: I knew that CF was fatal when I read about it in our World Book encyclopedia (ah, the 90s!). But my parents weren’t going around wailing and gnashing their teeth about my demise, so I figured, hey, I’ll think about this when I’m 30 or so.

If you’re a parent, try to do your freaking out when the kids aren’t around/awake. See point above. This doesn’t really go away because your kids get older. It’s hard to control yourself and console someone else.

 

6. As far as sharing on social media: let’s just say I was really glad I didn’t have Facebook in the years leading up to my transplant. There was no place–and there still is no place–for my parents to share photos of me in hospital rooms, in recovery, etc., because they do not have Facebook, or blogs.  If your child is old enough, talk to the child about sharing this private information on social media platforms. Some kids don’t care. Some kids, like me, care greatly. I did give dad permission to update my friends with regular emails when I had my transplant, but I would not have wanted him to attach any photos.

There are few things you can control, as a patient. You may not want these moments splashed all over Facebook or twitter. But talk to your family/your child about these things. Get everyone on the same page.

 

7. Do not worry about the things that MAY or MIGHT happen in five, ten, fifteen years. This is a waste of brain space and a huge source of stress. Think about what is currently happening. Focus on the immediate moment. What needs to get better? What are people trying to find out?

 

8. This probably should have been first, but: pray. Really. Get in touch with your pastor/priest/rabbi/whatever. I found it immensely comforting to talk to certain hospital chaplains that I really liked (Fr. Mark! More on him later!). God is in control, guys. He really, really is. Remind yourself of that frequently. Know that I still have to remind myself of this often. 🙂 I don’t think it ever stops, really, the need for Him to take care of all this. But if you don’t pray—start. It helps.

 

What do you do when life goes off the rails? How do you adjust? Do these suggestions help? Let me know in the comments.

 

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CF on TV: Bates Motel

Emma Decody (Olivia Cooke), Bates Motel

Emma Decody (Olivia Cooke), Bates Motel

Horror movies aren’t really my thing. I also have a deadly fear of stabbings. So that would seem to make me not the prime audience for the TV series Bates Motel, which, as the name suggests, is the prequel, of sorts, to the film Pyscho.

But then I read that there would be a character with CF, and that clinched it, because I’ve never seen a main character with CF on TV. Ever! So now I had to watch, mostly to see how the writers would portray a character who sounded an awful lot like me.

Emma Decody is a British transplant who lives in White Pine Bay with her taxidermist father. (Her mother ran off a few years ago) When the show starts, both Emma and Norman are juniors in high school and are in the same English class. Emma is smitten pretty quickly with Norman, who treats her a lot like the sister he never had, and it isn’t until the current season that they get together romantically, although Emma’s been hankering for it for a long time.

Emma, like Norman, is pretty much a loner, although she seems to get along OK with everyone at school. No one teases her or openly shuns her due to her illness or the oxygen tank she carts around. It’s established in the beginning that Emma’s disease is pretty progressed, and that she’s on the list for a transplant. That being said, Emma tries to live as normally as possible, which means going to school, helping her dad around the house, and even taking a job at the motel. She’s pretty insistent about doing things that people her age do, even when it’s a big strain on her (like jumping off a cliff into a pool of water in season two, like Norman and his friends were doing, or hiking up mountains with Norman).

Emma is, to my mind, portrayed well, sympathetically, and accurately. Olivia Cooke does a fabulous job bringing her to life. Her desire to be normal and to have a normal life are apparent, but occasionally her illness will flair up and interfere, like in a recent episode where she asked Caleb, Norman’s half-brother, to give her chest PT on the floor of the Bates house bathroom to help loosen the thick secretions that are what slowly destroy the lungs of CF people.

The thing I like best about this is that Emma is portrayed as a normal teenager. She has hopes and dreams and fears just like everyone else, and I especially like that both Bates brothers treat her as a friend and an equal, not as something strange or inordinately fragile. When they try to be too careful with her, she normally smacks them back to reality.

I’ve never seen Emma eat on TV, so they haven’t had to work enzymes into the show, or insulin. 🙂 But what I’ve seen is accurate and humanizing. The show gets good ratings, so I’m glad that more people can become aware of CF and what it does to people, and also that we’re “just like you!” (insert fakey smile here) Emma’s blog on the A&E website also links to organ donation, which is also a total plus.

Grace will lead me Home

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There’s been a lot of talk lately about Brittany, the girl in Oregon who is 29 and has decided to end her life in a few weeks, because she has cancer.

I was going to write about this. But then Ann Voskamp put this on her blog, and…all I can say is yes.

Yes, five thousand times yes.

Suffering is pain. Suffering is darkness and doubt and horrible things, and there are times when in that suffering and pain we want to end it all, to end in on our terms.

I know. I’ve been there. I’ve almost said no so many times. So many times I wanted to close my hands, like Ann says in her book, and say no, God! No God, I will not take this from your hand! 

No, no, no. I will not.

But the thing is…..that’s where the pain all comes from. From saying no.

What kicked Lucifer out of heaven?

Saying, no, God. No, God, I will not do this. I will not serve. 

And finally….

Thousands of years later….the world was healed and saved with yes.

Yes, God. Yes, I will do your will. 

“For I have come down from heaven, not to do My own will, but the will of Him who sent Me.”

–John 6: 38

I have laid in the bed, in the dark nights, with tubes in my body and pain in my mind and thought I can’t.

I have fought against that will. I have wanted to stop.

But then I realized that God is in all those details. He knows when I sit and when I stand, and He has marked out my day aright.

There is a plan…it’s just not one I know, all the way to the end. But to end the story before it’s really over? To deny myself, and others, any of the precious days that God gives?

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I can’t.

We have to–all of us have to–trust in the plan. Open our hands and say “yes” to whatever is placed in it.

God is always good. Always. No matter what is happening.

In the suffering is the good, the glory…its beauty.

And I say that as someone who knows it, and who has wanted to run away from it and deny it and has wished for something that would be easier.

But that’s not His plan for me. His plan is for me, right here, and right now, with this body.

When He calls me, I’ll go. But until then….He’s the author of my story.

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What defines you?

This is something that’s always bothered me and recently I’ve felt the need to articulate it.

Maybe it’s simply become more prevalent in the internet blogging age, but I see a LOT of people who blog where they totally define themselves by something that’s wrong with them. Some of these parents completely define (this is mostly parents, I’ve seen) their children by these facts.

This bothers me. If my parents had done this, I would’ve been so perturbed. No one’s parents are perfect, but I’ve had something wrong with me since I was a bit over a year old. Before being diagnosed with CF at 11, I had seizures. But I took swimming lessons, dance lessons. My parents took us to Disney World. We went to theme parks. After my CF diagnosis, I wasn’t given any “special” quarter. My parents didn’t deny me things like class trips to Disney, or anything like that. I wanted to be seen as normal, as much as possible. They treated me, as much as possible, like my other two “Normal” siblings.

So when I see parents who are so worried about their children that they won’t take them to theme parks, or to REGULAR parks (and CF kids do NOT have compromised immune systems, guys); who title their blogs with things like “CF (kid’s name)” or “CF Warrior So and So”, I feel bad for these kids. Because how are they supposed to see themselves as more than a disease if their parents very publicly do these things?

Personally, I only told people I had CF when they needed to know. My teachers only knew if I was on IVs, and then I needed extra time to get to class, because my school had 2000 plus kids and 4 minutes to get to class. Jostling in the hallways, not good. A really heavy backpack with a PICC line, not good. So I had extra time to get books and get to my next class.

I made up all my work. Always. Once I missed an Algebra II exam because my PICC line decided to start bleeding out in the middle of the night. (Yeah, that was fun.) After getting it fixed after an hour or so on the phone, I went back to bed, my mom called the school, I took the exam that afternoon. (believe me, I need all my mental powers for algebra…)

I see parents who treat their kids like they are precious pieces of porcelain that are going to shatter at the lightest touch. They have made their kids entire existence about a disease.

I do not, ever, want to be defined by the fact that I have a sucky genetic code. If I had to define myself as anything, it would be: Catholic. American. Italian/German/Scots-Irish. Writer. Sister. Daughter. Friend. Actress. Those sorts of things. Not “Oh, a kid with a bad genetic code.”

It makes me sad because I see these parents and I think, do you know what you’re doing to your kid? I feel like you’re stunting them. There’s a line between “My kid can do anything!” and “my kid can do nothing.” It’s called reality. I will never climb Everest, OK? I’m cool with that. I will never have kids. I’m also cool with that. (And that took a long time to get cool with, people. ) I may get married. I may not.

My life is not defined by things I can’t control. To me that’s like defining yourself by skin or eye color, or height. It’s not who you are . It’s something that is part of the puzzle, sure. But it’s not what I am.

I believe, of course, in awareness. Now I talk about organ donation a TON because I want to get more donors. I’m open about it in a way I wasn’t with my CF. Maybe it’s because it’s so easy to effect change. Be an organ donor. Save lives. Boom. Also, people don’t know a lot about genetic diseases. They can be afraid it’s ‘contagious’. So awareness is important, there, too, but it’s also harder.

I’ve had people reject me because of this stuff. I’ve had guys break up with me over it. And you know? That’s just part of it. But it’s not, and never will be, how I define myself. And it makes me sad when parents do that to their kids, because they are laying a mental groundwork that can be hard to overcome later.

I don’t want pity, and I don’t want special treatment. I’m not made of glass. Accommodation when needed, yes. I have a lot more doctor appointments than most people. I have my transplant team, my ENT, a cardiologist, a dentist, an eye doctor, an OB/GYN, a PCP (that I never see but that’s another story), a dermatologist, an audiologist. The list is long. Yes, I can get sick easier than most people, hence my “get a flu shot” campaign. But don’t treat me like I’m less because of these things. I am what I am, and this has made me what I am. But it’s not how I choose to define myself, or talk about myself.

I use this blog, sort of, as a platform for awareness and education of CF and lung transplant. Transplant, especially lungs, is a bit of a Brave New World of medicine. By talking about it, I’m hoping people will learn about it. But I don’t want to be the transplant kid, or a walking medical guinea pig, although I am those things. 🙂 I want to be something better.

I don’t know if this really makes sense. But this is something that’s been on my mind for awhile. Don’t define people by what they might “have” or “what’s wrong” with them.

For example: My CCD class has one kid who is blind. But you know, I don’t even think about that anymore. Yes, if people bring in something he can touch to cement a lesson, we let him touch it. But he’s so whip smart and adorable and just endearing that he’s just him. He’s not “the blind kid”.

Seven Quick Takes Friday Vol. 24

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I.

OK, so first up: please pray for Thomas Peters, AKA The American papist. He was in a swimming accident and has a broken neck; a Halo is being placed as we speak. They don’t think surgery will be necessary and that the spinal swelling will reduce on its own. Please pray.

II.

Also this article stunned and saddens me: 16 out of 17 babies found to have CF in utero are aborted. This is, of course, the result of several things, fear and ignorance being the top two. As a society, we fear suffering. We see it as an evil we can “avoid.” It’s not possible. So we kill people to avoid it. What? What sort of twisted logic is this?

It is an indescribable feeling, realizing that some people think you would be better off dead, than alive. Truly, indescribable.

I did meet someone like this, once. A girl I knew in high school. She was making the argument that we’d be better off not being born, and I said, “Well, then I guess you’re wishing I wasn’t here right now, because…” and then I filled her in. Complete silence. It takes a lot of gall to tell someone to their face that they shouldn’t be alive.

III.

Wow, those were cheery first two quick takes, huh? 🙂 Sorry! Here’s some poetry.

IV.
The NHL 2013-2014 schedule is out. My Penguins and Jackets play each other back to back here at Nationwide Arena Nov. 1-2. Those will be great days, indeed! I’m excited to have the Jackets in the Eastern Conference.

V.

Tonight I’m heading to Hocking Hills (so you’ll be reading this, as I’m going down there) for a weekend with my friends. This should involve s’mores, hiking, board games, and kids (two of the couples have kids now) and cooking. All things I greatly enjoy. Oh, and knitting! Hopefully I will complete one knitting project this weekend!

VI.

This week’s really good read: Veronica Roth’s Divergent. It’s being made into a movie with Kate Winslet and Shailene Woodley (The Descendants), so I thought I’d pick it up. Dystopian lit, yes, but good distopian lit! Do read it. It’s the first book of a trilogy, the last book of which comes out later this year (I think).

VII.

Speaking of movies and books: There is a new Percy Jackson movie coming out! Sea of Monsters, with new casting and new everything so that Percy is actually sort of the right age! Score! I’m excited for this one.

Mission

When I went to Nashville for retreat a week and change ago, I went because I wanted to get my purpose, my mission, my goal inline. As a lifelong Catholic, I’d thought my mission would be one of two things: marriage, or consecrated life ( as in; get thee to a nunnery), but I thought I’d get married and have kids and that was where my life would go.
I was wrong.
Almost got married. No consecrated life. I am a lay Dominican, but as I said d to Sr. John Thomas, to echo a mermaid, “I want more.” I didn’t feel like I was being stretched or challenged or filling what I was supposed to be doing.
Reding sore blog posts today on Patheos made me realize my mission: to tell stories, in particularly, mine.
For awhile I’ve wanted to write a memoir. I’ve got a 75% finished book proposal, ad some drft pages. But now I feel that it has to be one, written and sent out into the world.
I don’t think I’m a hero or a saint, though I’ve been called both. ( each time I want to go, really, people? Are unsure youre talking to the right person?) People somehow equate survival with heroics…I don’t know about that.

But I do know that more and more people like me aren’t being born. People with genetic diseases try to prevent their children from having the same disease, which makes me go, “why?” Don’t give me, oh, I don’t want her to suffer like I did.

I’ve always sort of thought suffering is a choice–pain isn’t. Things hurt. Suffering, as in, your mental state, is a choice. It’s a verb–it’s an action word. It’s not something that can be avoided. Everyone suffers differently. So if my kid didn’t have CF, they’d have something else. It could be less. It could be more. Are you saying that you wish your parents had aborted you? Or decided “not to implant” your particular embryo? I certainly hope not.

Benedict XVI once said, “Each of us is willed, each of us is loved, each of us is necessary.”  We are all necessary.

Why can I do this? Because a lot of other CF folks don’t–they get their transplant, and they die. Or they don’t get their transplant, and they die. Or they’re OK with their lives, and they don’t really think about the greater world and how it perceives us (and by “us”, I mean all those who aren’t quite genetically or physically or whatever-ly normal. [As Br. H would say: “Normal? What does anyone in this family know about normal? The only normal one here is Jack-Jack, and he’s not even toilet-trained!”])

I have to write my story. I have loved all of it. In less than a month, I’ll be 31–something I hadn’t imagined as a kid. It seemed so old. My life isn’t perfect, and I’m not a saint, or a hero. I have not gotten everything I’ve wanted in life, like all of us. (Name me one person whose life is completely fulfilled.) I’m a person who has tried her best to have “life, and have it more abundantly.” The fact that so many people see my birth as a mistake or a choice to be avoided, as something terribly wrong, is what I have to correct.

God made me this way. He wanted me this way. And in the book, and in this blog, I want to tell you why this life is just so darn worth living. Why you shouldn’t be afraid if your kid has a disease or a defect or a whatever. Yes, life can be hard. Pain happens to everyone. But that isn’t a reason to not live life.

I look normal. I don’t have an oxygen tank, I don’t have scars in visible places, unless you count the right arm burn/skin graft. I work and I pay rent and I grocery shop and I do all those other things people do. Maybe if people can see that–they’ll think again. Or they’ll at least know that it is possibleA lot of the stories out there have been told by parents. I think we need to hear from us.

So now, I have to finish that draft. I have to write it, finish the book proposal, get some kind soul to read both and comment (or at least the book proposal) and then send it off.

Seven Quick Takes Friday Vol. 9

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I.

We’re going to start with this week’s reading, because there’s been a lot: I started The Enchanted April and Middlemarch (I’ve been trying to read Middlemarch since College. We’re going to do it now, dang it.) Finished An Everlasting Meal (SUPERB, anyone who likes food or cooking or both needs to read it) and Loverly, about the creation of My Fair Lady. I found Loverly a bit more academic than I was hoping, but oh well. On the to-read pile: Walking on Water, by Madeleine L’Engle, and Anthony Trollope’s Can You Forgive Her? Yes, I’m into big 19th century novels at the moment.

II.

I finally got around to watching Le Nozze di Figaro. What a fun opera. I’m not normally much of a Mozart fan, but I do love his operas, and he created Cherubino, and who doesn’t love that? (Especially if you’re a mezzo, then you need Cherubino in your wheelhouse). His famous aria Voi Che Sapete is in every mezzo’s aria book. And, come on, it’s just fun.

III.

I wrote this about Jane Austen earlier this week (just posted today). I’m tired of the whole “let’s bash Jane because people like her” school of thought. We do not need to do this, folks!

IV.

A brief rant about doctors–this came up in a facebook group I’m a part of. Just because you are an adult doesn’t mean you can be treated at an adult hospital.

OK, I realize that sounds weird. But I’ve had docs–particularly ER docs–“lecture” me when they realize I’m 30 and still at a kids’ hospital. “You really should go to adult ERs,” they tell me.

Well, um, no. First off, adult docs do not know how to handle me. Most of them still think CF is a kids’ disease. I am also a transplant patient, and very, very, VERY few hospitals know how to deal with that. Combine those two with my massively complex medical history and my port (which, again, very few ERs have nurses that can access one), adult ERs do not like me. Adult hospitals do not like me. I go to Children’s because almost all the nurses and doctors know me (I’m not kidding, here); my transplant docs are one extension away, and my entire medical history is accessible with a tap on the computer at NCH. They have all my meds, all my history, all my procedures, right there. It saves time, it saves headaches, it makes everyone happy. Except for a harpy of a doctor like this one, who presumes to tell me how should handle my medical care. Really, I want to give these docs a stern, stern tongue lashing. Stern, I say. Adult hospitals will usually not have my drug formularies on hand, should I need to be admitted; they won’t have people who can access the port on hand; and generally, they’ll be dumb. Oh, and guess what? They’ll probably send me to NCH Anyway. 

So, no thanks, doctor, but I will come here. You can shove it. The Only time I would go to an adult hospital would be for heart stuff. And even then….the adult hospital I’d go to is scary because it’s where they take the state prisoners, so it’s not a real fun place to be.

So to my doctor readers: Read this and take it to heart, please? I’m not just at a kids’ ER or hospital for the NickJr.

V.

So the tax refund came. Oh joy! This means replacing certain things in the house that have gone to H-e-double hockey sticks, like my blu-ray player, which was definitely done, and getting some new pots for the kitchen. I’ve had my pots for many years now, and some of them are giving up the ghost. So I’m going pan shopping which I actually enjoy. 🙂 And a real teapot! If I can find a real teapot (not the type you boil water in, the type you seep the tea in for serving), I will be a happy woman.

VI.

I’m going to Holy Hour/Rosary/lecture at my church tonight, with the talk by some Dominicans of Mary, Mother of the Eucharist. Should be a great treat! I haven’t been to a holy hour in what seems like eons, but it’s probably just been a few months.

VII.

Posting this after the Holy Hour–Quote of the evening, from my friend Mary: “You really didn’t need the microphone.” (Five of us ladies were asked to lead different decades of the rosary. There was a Bible verse, a meditation, and then some questions before hte decade proper began. And yeah, Emily never needs a microphone. Why even give me one? 🙂 )