Things That are Saving My Life

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).  

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?

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! 

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

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. 

*

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. 

Sharing Contemplation No. 1

One of the mottos of the Dominican order is, "to contemplate, and to share the fruits of contemplation." It's one of the ways we evangelize. So every so often, I'll be sharing the fruit of my contemplation with you. 

On my phone case is a Bible verse. I know, that's kind of weird, right? And it's not even a popular Bible verse. In fact, it's one whose meaning changes a little bit based on the translation. But this verse has played a big role in my life. 

May the God of Hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit. 

Romans 15:13 (NIV)

In the Revised Standard Catholic version, "trust" is changed to "believe." And to me, that doesn't pack the same punch. I've always believed in God. I haven't always really trusted in God. 

There's a difference there. 

Believing in God means I know that He exists. My faith is built on that. But trusting in Him means that I believe He's going to take care of me, to do what's best for me, all the time. That He won't let me fall. And that's harder to me than just believing in Him.

Right after I left my job a few years ago, I went on a silent retreat. It was the end of Lent, and it had been a hard Lent. I knew, intellectually, that leaving my job was the right decision. I felt that God had led me to make that decision. But I wasn't at peace with it. I didn't really trust Him not to let me fall. 

At every meal, Scripture passages, written on small cards, were at each plate. I always sit at the same spot when I go on retreat. (I'm like Sheldon that way.) On Saturday at lunch, the card at my plate had this verse from Romans. And it stopped me in my tracks. Relief washed over me. 

Emily, I'm going to take care of this. Trust me to take care of it. 

It's hard. I still have to remind myself that God's got this, over and over again. Like Ann Voskamp says in One Thousand Gifts, "trust the bridge builder." If I trust my earthly father, shouldn't I also trust my heavenly Father, if not more than I trust my earthly father? (And I trust my parents an awful lot.) 

Today, while doing my Advent study, this verse was one of the ones suggested 'For Further Reading.' And once again, I was hit with God's reminder to trust in Him. To Rest in Him and acknowledge that He provides--often better than I ever could've thought He would. 

This video popped into my mailbox today, too. Coincidence? I think not. 

Is God invited you to trust, too? Step into that trust. Know that He can always always always be counted on. 

Simplifying the Holidays: The Gift of Presence

We're heading into the Holiday Season: Thanksgiving, Hannukah, Christmas, etc. All the joy. All the wonder. 

ALL THE STUFF TO DO!

Right? I currently have a very long list of things to do, and some of them need done this week, because my Thanksgiving is shaping up to be busier than my Christmas will be, in terms of guests in town and people I want to see. 

So, while I am doing some things to prepare (making people's favorite chocolate gingerbread, deep cleaning the kitchen floor, and writing out Christmas cards), I want to remember that the most important thing is to FOCUS. 

I want to give people my presence this holiday. 

That means, putting the phone away (Other than to take photos!). It means engaging in conversation, listening, having fun with people that I love. It means sharing stories and watching Christmas movies together, or playing Euchre, or getting hot chocolate at Barnes and Noble on Black Friday.

Gifts are great, but let's try to really focus on the people around us this holiday. Why are we working ourselves like crazy to get ready, if it's not so we can make magic for people in our lives? 

Let's focus less on magic, and more on memories that don't require a perfect living room, a perfect tree, or the perfect cards. 

Put your phones away. Talk to each other. Engage. Make memories. 

How you spend your time is how you spend your life. Spend it wisely. 

*****************

Today is the feast day of Bl. Lucy of Narni. Yes, that Lucy, and that Narni-a. So avoid Turkish Delight, tea with fauns, and any white witches. But you can have tea with the beavers! Read about the real Lucy of Narni here. 

If you would like a great Advent devotional, may I suggest this one? (I'm editing the Lenten one!) 

And finally, Catholic 101 can be purchased here! 

I am not brave

Let's just get this out of the way. 

I am not brave. 

I am not courageous. 

I am definitely not a saint. 

Yet, people call me, and people like me, these things. 

This makes me really uncomfortable. 

Having CF, and having a transplant, do not make me brave. 

Are you brave when you get up, get dressed, have your breakfast, and go to work? When you do the dishes and get the mail and pay the bills? No. You're living your life and being responsible. 

When I did my treatments, took my enzymes, went to clinic, did IV meds...that was my life. When I take my meds in the morning, when I go to clinic now, that's my life. That's completely normal to me. It's not brave. It's not courageous. 

Deciding to have a transplant? It was just deciding to live my life, to do what I needed to do to extend it. I wasn't afraid of dying on the table, because I knew without the surgery, I'd die anyway. So, choosing transplant wasn't brave. It was pragmatic. 

Going to college? Getting my degree? Working? Again, no brave. Not courageous. Living my life. That's all.

When I see stories about how "Brave" people like me are, because we live with illness, I want to scream. It's not brave. It's just doing what you have to do with the hand you're dealt. What would you do? Curl up in a ball and refuse to leave your room? Refuse to do treatments? I guess. I knew CF people who did. 

Bravery and courage are not what I have. I hated selling Girl Scout cookies. I'm not brave. I won't sky dive or even do a high-ropes course. I'm NOT A SAINT. I just am. I live my life the way all the rest of you do. This morning, I took my pills with my coffee. I've been taking pills with my breakfast since I was about two years old. It's not out of the ordinary. It's not brave. I'm not brave when I "let" people stick me multiple times to get an IV in. That's not bravery. That's what I have to do. What's my other option? 

My parents are brave. They hold it together when everything is threatening to fly apart. I am not brave. I'm just doggedly stubborn. 

Brave people are the people who rushed into the World Trade Centers on 9/11 to save the people inside, knowing they would probably die.  Navy SEALs are brave people. Soldiers, firemen, nurses, first responders--they're brave. I don't put my life on the line. I don't do anything to save other people. 

So please don't call me brave. I'm not. 

********************************************

(Catholic 101 is now available! Pick up your copy here: https://gum.co/RMkqu) 

Making Life Accessible for All

 (I've written about the Americans with Disabilities Act here and here. ) 

I'm a big fan of the Americans with Disabilities Act. But I also don't think it goes far enough. And when people say, oh, we don't need it, it's unnecessary government intervention, I want to use this post as an example of how it doesn't go nearly far enough. 

I've never used a wheelchair on a daily basis. I've spent time in them in hospitals, but I've never had to move one myself. * My disabilities are invisible, for the most part. But I've become sensitive to how the ADA's application meets only the letter of the law, and not the spirit, and it was never more pronounced to me than this weekend, while I was out enjoying a day with my friends. 

Most people think that people in wheelchairs get pushed around by someone else. That's not entirely true. With car adaptations, different types of wheelchairs, and other innovations, people who rely on a wheelchair for mobility can get around by themselves--if the world decides to help them out. 

This weekend, I went to several places: a Mexican restaurant, a grocery store, a bookstore, and a movie theater. Only one of these places would've allowed someone who was in a wheelchair, or used a walker or crutches, easy access to the building. 

The Mexican restaurant had no handicapped button for the entrance, and there are two doors. The first one opens to a vestibule that has stools in it, and usually people waiting, and it's sort of narrow. You then have to open another set of doors to get into the restaurant, proper. And then you can get a seat, because they have wheelchair accessible tables. But if you're a person trying to get around without help, you're sort of stuck. 

The grocery store had sliding doors. Win. 

The bookstore is a local Barnes and Noble, and this is where I really noticed the problem. Barnes and Nobles have two sets of doors, in all their buildings, so they can sell discount books in the entryway. But the doors aren't power doors. So the person would have to pull open the door with one hand, somehow keep it propped open enough to wheel through, then open the second door, wheel through, all without, you know, hitting themselves, and assuming this can even be done. I'm guessing it can be, but it's probably difficult. 

The trip to the bookstore actually illustrated the problem I"m writing about here. There was a woman pushing another woman in a wheelchair. The woman pushing would've had to step in front of the chair, open the door, prop it open while someone else pushed the woman and her chair through, then prop open the next door and do the same thing. Instead, I held open the first door, and someone else held open the second. 

But think about this. This is madness. Why have a curb cut in the sidewalk leading up to the store, why have handicapped parking spaces, if there's no easy way for a handicapped person to enter without help? 

And then I decided to start taking photos. 

The next stop was the movie theater. This is where it got ridiculous. 

This is the handicapped entrance, tucked off to the side. So at least there is one. 

But then this is the way into the theater from that entrance: 

Do you see a problem here? 

When I started to think about it, it just got insane. We have curb cuts, but we don't have doors that allow easy access for wheelchair/walker/crutches users. What madness is this?! 

We need to start expanding the idea of disability. People who are disabled are also independent--or would like to be. But on my Saturday wanderings, my day would've been a lot harder if I'd been mobility-impaired. Now, I guess, if I was in a wheelchair, I'd be used to it, but that doesn't mean I'd like it. 

And of course there's all the other things. Stores having counters that are level so someone in a wheelchair can see over. Having accessible tables at restaurants (although I've seen this on the rise). The list goes on. 

The next time you're out, look around. How easy would life be if suddenly you couldn't walk? If you broke your leg or something? I'm betting your life would get a lot harder. And it doesn't have to be that way. 

We don't need these double entry doors. Put power doors on your entrances, if you're going to do that. Make it easy to find handicapped accessible entrances, and then don't block them! 

There is so much more work that needs to be done to give access to all people. So, yes, we need the ADA. We need it to be stronger, if anything--not done away with. 

*I have moved the chair, briefly, in hospitals. But not for long--they usually don't let you do that. 

Welcome, October

 A month ago I was in Duck, NC, sitting in Duck's Cottage, writing in my journal and thinking about what the month would hold. And now it's October, one of my favorite months of the year. It finally feels like fall here in Ohio, so all the windows are gloriously open, the nights actually feel chilly, and it's definitely candle-lighting season at my house. 

September was a month of great progress, both inner and outer, and I'll be writing about that over the next few days. My October Power Sheet tending list is huge. A lot of it is small things, but there's a lot I want to accomplish this month! One of the big things is finally finishing my ebook and getting it ready to sell! Yay! It's so close, guys, and I'm so excited to present it. 

Do you set monthly goals? What do you want to accomplish in October? 

And happy Feast Day, St. Therese!  Little bloggy throwback there. 

Have a great Sunday, everyone! 

Kneeling, Standing, Sitting....

I'm going to hide under the covers until the NFL controversies are all over....

While I'm on a controversial topic jaunt, I might as well address the NFL thing.

Here are my questions: 

What are the players who are kneeling trying to accomplish?

and

Is this the best way to accomplish it?

My answers are, I'm not sure anymore, and two, no. 

I think all this started with Colin Kaepernick wanted to protest police brutality against unarmed black men, and support the Black Lives Matter movement. OK. He has a right, as an American citizen, to do that. I'm not generally a fan of "awareness" campaigns; for example, I think we're all aware of autism, breast cancer, HIV/AIDS, etc. by now. The general public does not need to be made aware that these things exist. But let's leave that for a second. 

Some people have the idea that free speech= "consequence free", "say what I want any time I want to say it" speech. Much the same way that your right to extend your arm ends where my nose begins, protesting something on company time, and/or while representing a team/country/group, can get you into trouble. 

NFL players are citizens, and they have the same rights as all citizens do. But when they wear the uniform, when they go out to play, they are representing their team. And most teams, and most leagues, and most businesses,  have rules about appropriate behavior when you are on "company time". 

Which leads me to point two: this is not a good way to bring attention to the matter. First off, most people watching don't care what the players' political causes are. Let's just be honest. When people go to a game or a concert or any entertainment event, they usually don't want to hear the political stylings of the actors/athletes/entertainers involved. A famous example is the Dixie Chicks, circa 2005. Most people just want to be entertained. If people wanted politics on Sunday afternoon, they'd be watching CNN or MSNBC or FoxNews, not The NFL on CBS. 

So, any attention brought to these causes, during these protests or whatever, is negative attention, especially when it is done in a way that is sort of classless. One can discuss a cause that is close to one's heart during a concert or something. I've attended concerts where the artist has spoken about her love of the environment and protecting it, or the artist's particular charity. That's one thing. To do it in a way that is not quite so full of comity is a bit...gauche. And also, it's not productive. It completely turns off people from what you're saying to how you're saying it. 

 When you are an athlete who decides to take a knee during the national anthem, which holds a fairly sacrosanct place in American public life, you are most likely going to get backlash. If you're going to protest during a game, could you choose any worse time to do it? I think not, just from a PR standpoint, or even a common sense standpoint. 

If racial injustice/ police brutality is something these players wish to draw attention to, that's great. Do it on your own time, guys. It's not like any of you lack for a bully pulpit, should you choose to take it. If you genuinely care about a cause, then start a foundation. Give press conferences. Make speeches. Visit the mayor, the governor, Congress. Do it in myriad other ways than refusing to stand and salute the flag of the country that, with all its issues, is also allowing you to make millions of dollars a year playing a game.  The fact that you can do that, that you are doing that in America is sort of amazing in and of itself. And, oh, those millions of dollars? Are sort of dependent on not irritating the people who come to watch you.  Ask the Dixie Chicks how well politicking from the stage helps you to sell records. 

There are many ways to make a positive contribution to our political life, and there are many ways to protest. This is not a productive one. No one wants to see the host of Face the Nation  on The NFL Today. No one tunes in to the pre-game show to hear what Bill or Terry or Boomer or Shannon have to say about politics. They want to hear them talk about defensive schemes and coaching changes. If you want political commentary, you're watching a news channel, not sports. 

The argument can be made that people should be disturbed, they should be shaken up, by these things going on. OK, again, fine. That's a legitimate point. But there is a time and there is a place and there are much better tactics that will serve to make your point, other than refusing to stand for the national anthem. Think about other, more constructive options. Because what's happening is, attention isn't brought to the cause. Attention is brought to you, making it look self-serving and egotistical. 

Because right now, we're not talking about any Big Issues. We're talking about which team had the most players kneel during the opening of a football game, played in the Wealthiest Country in the World, by guys who are getting paid millions to catch, or stop people from catching, a ball. 

(And if you want to make your point, please don't wear socks that have pigs dressed as cops, because that's just horrible bad taste, and keeps you from making your point and helping your cause. )

**Just a side note: I don't mind that the players get paid a lot of money. It's a basic principle of economics. They do something a lot of people can't do, and a lot of people will pay a lot of money to watch them do it. I'm just using it to illustrate the point that they have a lot of resources at their disposal that could be used to further any cause they care to champion in a more positive way. 

What We Think It Means

Most of us are probably familiar with the line from The Princess Bride : "You keep using that word. I do not think it means what you think it means." 

There's a lot of that going on in our country today. 

Let's take a really common word: Sinner. What does this word mean? 

If you google the definition, this is what you get: 

a person who transgresses against divine law by committing an immoral act or acts.

If you're Christian, we could take this to mean--breaking the 10 commandments, for a start. But you can break that down into lots of other things. 

But the whole point of Christianity is that Jesus Christ, the second person of the Trinity, came to Earth and died to save sinners, which is everyone. No one is perfect. Every single person is a sinner. 

So when I see signs that say "sinners welcome" on church billboards, I wonder, where are the churches where sinners aren't welcome? Because that's the whole reason the churches exist. 

Now: that being said. There is a difference between a repentant sinner and a sinner who persists in sinning. When you go to confession, one of the key things in order to receive absolution is that you must be sorry for your sins, but you also must say that you're going to try to avoid it in the near future. So, if you go into the confessional, and you say you gossip, and you're really going to try to stop, but you don't mean it--you have no intention of stopping, you just want the "rubber stamp", so to speak, of forgiveness--then it's not true contrition. You have to have the contrition. 

But if you go in and say you're going to stop gossiping, and then you go out to dinner the next day with your friends and you gossip, and then your next thought is Oh dang it! , then you're trying to stop. You're not perfect. You haven't conquered that sin yet. But you are attempting to quit. That makes a difference. It's like a person who's trying to lose weight. Sometimes you gain some back, but the key is--are you still trying? If you are, then you're on the way toward success. If you're not, then....

Now, this is all wholly different than saying "we welcome sinners, and you can just keep right on sinning and that's just fine with us." NO. Nuh-uh. 

Every person, in every pew across the world, every weekend, is a sinner. But there's a difference between a church who says, "we love you, but this thing you're doing? It's not good. It's sinful. It needs to stop," and a church who says, "oh, we love you and your sin. You don't need to change. That's OK. Because it's not really sin anyway. It's just you!" 

What did Jesus say to the adulteress? Go and sin no more. Not, oh, it's OK lady, keep doing what you're doing. 

Sin is terrible. It had terrible consequences. We all sin. But that doesn't mean that we should keep doing it because it's our default, so to speak. We have to work against it, and try to become the people God created us to be. Everyone has a particular fault--or several--that they struggle with. I sure do. I'm sure you do. Everyone does. 

God applauds effort. The church applauds effort. Effort actually counts! But saying that a person's decisions are not sinful, that we just love them as they are--that's a lie. That's what GW used to call the soft bigotry of low expectations. 

Christians are required to love everyone. What's that line from The Incredibles? "The law requires that I answer no!" But as a wise Dominican once told me, "people don't have to like you. They have to love you." 

Love is hard  and love is tough. A parent that doesn't discipline his kids ends up with spoiled brats. A church that doesn't try to guide her people toward salvation, our highest possible God, and eternal life and happiness with God, isn't doing its job. The Church isn't loving you if it's not telling you the truth in charity. It's doing you an eternal disservice. 

The Work of Acceptance

Andrew Wyeth, "Christina's World" 

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

This is not true. 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

This is true of so many things. 

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

A life that is still little and broken is still good. 

Because no one isn't broken. 

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

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

It's still good. 

The lie of fine

"I'm fine."

"It's fine."

"That's fine."

It's all fine. Isn't it? 

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

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

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

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

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

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

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

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

"I'm fine."

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

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

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

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

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

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

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

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

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

I don't know. 

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

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

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

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

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

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

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

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

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

Welcome, 2017

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

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

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

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

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

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

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

I hope 2017 is a year of Bravery. 

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

-- 2 Timothy 1:7

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

--Psalm 27:1

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

2017 Goal Setting

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Do you have goals for 2017? What are they? 

Three Things I Learned on Retreat

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

Three things I learned on Retreat: 

Go Deep Into the Word

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

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

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

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

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

Daily Mass Must Be a Priority

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

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

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

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

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

Confidence, Abandonment, Trust

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

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

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

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

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

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

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

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

--St. Thérèse 

You Get What You Get

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

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

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

Instead: 

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

Yeah. 

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

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

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

Um.....because that's what you get? 

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

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

I don't understand it. 

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

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

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

Why "powering through" illness is a bad idea

Not a good idea when you're sick 

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

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

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

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

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

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

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

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

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

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

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

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

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

For Sage

I lost a friend yesterday. 

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

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

She would've liked this--purple confetti. 

(And GOSH I hate using the past tense.)  

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

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

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

And then, a few hours later, she died. 

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

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

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

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

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

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

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

Disclaimer: I don't own this!

Summer Scribbles: Journal keeping

Today's SITS girls prompt: 

Do you keep a journal? 

I sure do. 

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

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

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

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