Sage's Shawl

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

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

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

It's called "Sage". 

Then I knew I had to have it. 

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

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

She didn't. 

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

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

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

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

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

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

Thirteen

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

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

My brother got married

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

My sister got engaged

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

I saw the Stanley Cup with my parents

I went back to Williamsburg and Duck 

I started writing and editing for Take Up & Read. 

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

I knit my first shawl. 

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

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

I would've missed my brother's wedding. 

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

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

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

I try not to think about that. 

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

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

And that about sums it up. 

Thirteen years of overcoming is pretty good. 

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

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

"Even crazy people like to be asked"

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

Yup. Not making that up.

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

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

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

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

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

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

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

Chronic illness, in general, has links to depression.

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

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

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

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

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

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

The Big Bad Wolf

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

You are not running the world.

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

But you have to be vulnerable and tell people that.

And that is hard.

I know it’s hard.

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

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

We need to bring this stuff out into the open.

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

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

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

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

So, here we are.

I’m writing about it.

And I hope that this helps someone, even marginally.

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

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

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

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

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

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

But it’s worth it.

Medicine Is Good

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

Medicine is good. 
Doctors are good. 

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

Guys. 

No. 

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

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

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

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

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

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

Guys, that's not true. 

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

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

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

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

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

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

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

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

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

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

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

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

Stop waiting around

Trivia night victors! 

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

Things That are Saving My Life

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.)