Amber

“The Song of the Lark”

Amber has joined my buddy Sage.

It’s sort of funny. It used to be that CF kids knew each other more than I did—we’d have wards and camps and so people had lots of CF friends. I never did, because that was all on the way out when I was diagnosed. I knew one kid from my first admission—Elvis (yes, that’s his name)—but I never saw him again after those two weeks of my first admit. (Although, in a strange twist of fate, one of my best college friends was from his hometown, and his mom was his teacher.)

There was Jenny, my freshman year of college—we were on the same dorm floor. I don’t know what happened to her.

But post transplant, I met more people with CF. Sage. Piper. People on Facebook. Kathleen. And Amber.

Unlike Sage, I had met Amber several times. She was the second transplant at our center (I was first, a fact that was a bee in her bonnet for awhile. Cracked me up.). She was younger than me, around my brother’s age (she was born in 1986). She’d been diagnosed with CF the normal way—as a little kid—but she lived nearer the Toledo center so that’s where she got her CF treatment.

We were both writers—she wrote a book called Breathtaking about her experience—and we both went to small Ohio colleges. (She had started at Cedarville University, but couldn’t finish because she got too sick, and eventually graduated from Moody Bible College.) She had a husband and they had adopted a little boy named Noah. He started preschool this month.

Amber had been in rejection for about two years, but she was a force. I mean, I’d never met anyone who was so unapologetic about herself, her life, her goals. She just told you whatever she thought, right out. “You can’t say that to people!” I”d tell her.

“Why not?”

Eventually, some of this rubbed off on me in dealing with our doctors. Ha.

She was just so unapologetically her. Honest, open, passionate, feisty. You always knew what she thought. But she wasn’t mean. She was just open in a way that a lot of people aren’t.

For two years she’d been driving from her home in northwest Ohio to get treatments at The Resort, to try to keep herself alive. There was talk of listing her for a second transplant.

I last saw her in July, at clinic. Clinic days are Mondays and so generally you tend to see other pre and post transplant patients at the same time in the halls and labs and in outpatient radiology. We got to catch up a bit, which was nice, because we hadn’t in awhile. She was carrying around a portable oxygen tank (when I say portable, it really was—it could be slung over your shoulder like a purse), but she was still fiery. Still giving me crap for wearing a skirt to the doctor’s. :-p “Comfort!” She said. And she was right, but I told her I preferred to use my feminine wiles to make the doctors do what I want. I was kidding, and she knew it, and we laughed about it.

I had seen on Instagram that she had missed an outing with her son to the zoo on Labor Day. But I thought she was okay. I have a news feed filter on my facebook app—basically, i don’t see scrolling updates anymore—so I had completely missed that she had been admitted with pneumonia and they had bronched her and she was in the ICU while they figured out a long-term plan.

I messaged her on Wednesday, to ask her a question about treatment. It was my brother’s birthday.

I got from his birthday dinner that night to find a message from her husband—Amber had died on Monday morning.

*

I don’t know why I’m alive, still, and Sage and Amber aren’t. Part of it is the idea that their journey, what God wanted them to do with their lives, was “complete”, I guess. And I’m not done. Which, I mean, is fine, I like being alive. But why me? Why not them too? Why are their husbands widowers, why is Noah without a mom, why did George the dog never see Sage come home? Why? Why do my siblings get to have me, and their siblings don’t?

I don’t know. I know God knows, I know He has his reasons, but I don’t know how much that really helps right now.

In Amber’s case, she had almost fourteen extra years. Her transplant anniversary was September 25. In those fourteen years, she wrote her book, she traveled to speak, she got married, she adopted Noah. She had extra time that she never would’ve had other wise.

But she was still only 33. Sage got an extra year of life, she had a wonderful husband and family and the sweet pups and even sweeter nieces and nephews.

I’m older than both of them.

A lot of people, post transplant, experience the feeling that they need to live for their donor. That they’re sort of entrusted with continuing the donor’s life as well as their own.

I never really felt that—probably because my donor was older, so it wasn’t like another 23 year old had died. (I’m not denigrating my donor’s gift, obviously! OBVIOUSLY. Just trying to explain how I feel.)

But I do feel, now, like I’m living for them. Sometimes I know Sage wants me to do something, to be brave and to ride it out.

And now I’ll feel Amber yelling at me to be honest and tell them how I really feel and figure stuff out, dang it. To just do x.

Both Amber and Sage had strong faith. I know that they’re happy. (I mean, one has to be happy when beholding the beatific vision, right?)

But gosh, I miss them both.

Miracles (and suffering)

(This might not make a lot of sense, but it’s something I’ve been thinking about this week, so I thought I’d share with you.)

How do you define a miracle?

Normally we use it in the sense of something extraordinary, out of the ordinary, that can’t be explained. Generally it’s a life-saving thing—a miraculous healing, a miraculous escape, a miraculous rescue.

And the other thing we tend to associate with miracles is perfection. The person is perfectly healed. The person is perfectly restored to life and health and family.

But is that true?

Jesus did a lot of miracles in the Bible. He still does them today. I know I’ve been the recipient of several.

But you know, Lazarus still had to die. So did the little girl.

I will die, eventually. So will you. So will your family.

(#LivingMementoMori, y’all! :) )

Sunset—no filter required—outside Orchard House.

Miracles are great. Believe me, I believe in them, as the song says. I believe in them strongly. I pray for them.

But I’ve never had a miracle that fits the definitions above—the “perfect” part. I’ve received miracles, but there are other aspects of them too.

I’ve lost hearing. I almost lost my arm. And those things, in the grand scheme of things, are small, because I’m alive. But when I was sick, I didn’t ask God for perfection. I asked Him for life. I asked for the chance to keep on living.

(In order to get my CF diagnosis, we had to switch pediatricians, which happened because my old pediatrician died. The connection of all of us in the grand story is impossible to unravel. )

Some people don’t get that miracle. Why did I get it, and Sage didn’t? Why are some people healed, and not others?

But there are other kinds of miracles—miracles of grace. The miracle of acceptance, of fortitude, of grace and cheerfulness and continued life even in the face of darkness and doubt and despair.

A miracle doesn’t necessarily mean perfection. It doesn’t mean that we get exactly what we want when we want it, because God knows so much better than we do, which is crazy to think about. What good was achieved by Sage’s death? What good is achieved by so many of the losses, of the pain, of the darkness? What good is achieved when babies die and people commit suicide and people starve?

I don’t know. And neither do you.

God does, though.

God sent His own son to die for us. Every single one of us will face death, and we will face pain and loss of those we love and things we can’t live without.

We beg for miracles. That’s true. That’s right. God wants us to ask for them.

But…..sometimes the miracle isn’t the physical miracle.

You know, Mother Angelica once said she could go to heaven with a broken body, but she couldn’t get there with a broken soul. That’s true.

Pray for the miracles. Pray for God’s intervention. Ask, seek, knock, beg.

But remember that if God doesn’t give you what you want, it doesn’t mean that He didn’t hear you. It doesn’t mean that He’s smiting you. It doesn’t mean that you didn’t have enough faith. (That one gets me, big time. Mary’s baby boy died—and no one had more faith than she did!)

Be thankful for imperfect healing. Be thankful for imperfect life. Be thankful for acceptance.

And the thanks might come on the far side of a lot of yelling at God, or screaming, or almost despair. God I do not understand.

You’re not alone in that. The apostles didn’t understand either. We can’t understand.

What we need to cling to, though, is that in every situation, in all circumstances, God is with us.

This isn’t airy fairy talk. This is talk I know. I know even in the darkest moments, in that valley of death—the real one, actual, true death—God is there, even if I don’t feel Him, and there are times when I haven’t. It’s not like I’m always walking around in a cloud of Blessed Assurance, y’all.

Miracles are gifts to us. But we aren’t owed them. I didn’t do anything to “deserve” getting a second chance at life.

The psalmist says that God’s ways are mysterious. There’s no better place to see that than at the precipice between life and death.

The miracle you might need the most might not be the one you’re asking for.

St. Dominic, the Innkeeper, and Twenty-First Century Preaching

El Greco, St. Dominic in Prayer

There’s a story about St. Dominic that’s familiar to every Dominican, and I think it has important implications for us today.

Here’s how the Nashville Dominicans tell the story on their website:

Two years later a diplomatic trip brought Dominic into the Albi region of Southern France. A strong zeal for the salvation of souls was enkindled when the young canon encountered an innkeeper who was steeped in the errors of the Catharists, a heresy which threatened the region. Although other religious had been commissioned to preach in the region, little progress had been made. After a long night of intense discussion, the light of truth prevailed and the innkeeper returned to the practice of the faith.

So let’s break this down. Think of a hotel. Imagine you’re in the lobby, getting something to drink before you go to bed, and you start making small talk with the desk clerk. You discover that he’s an agnostic.

You have a few options:

Don’t say anything. Just smile and say good night, but mentally pray for him.

Share that you’re Catholic. Don’t go any father.

Tell him that he’s going to Hell.

Say that you’re Catholic and spend the rest of the night trying to browbeat him into submission!

What did St. Dominic do? He talked to the innkeeper. All night. You can imagine that it wasn’t full of highly charged statements (like, hey, you’re going to Hell! Good night!) or polemics. It was probably logical—because we Dominicans love study—and it was probably methodical. And it was also probably gentle. I doubt the innkeeper would’ve stayed up all night if St. Dominic was banging him over the head with proofs!

There’s nothing wrong with a good discussion, including one that gets a little exciting.

My siblings and I are all half-Italian. When we have discussions, we get loud. We get boisterous. We use our hands! For people new to way we converse, you can think we’re arguing. (Growing up, our mother, who is not Italian, often told us to stop arguing. “We’re not arguing! We’re talking!”) St. Dominic was Spanish, so I wonder if he used his hands, too. Maybe!

But there’s a distinction between passionate arguing and getting personal. And on St. Dominic’s Feast Day, that’s what I want to talk about.

St. Dominic (detail) from “Christ Mocked with the Virgin and St. Dominic,” Fra Angelico

One of the mottos of the Dominican order is “Veritas”—truth. We love truth. We live to spread the truth of the Gospel all over the world! And that’s part of the reason we study, so that we can know what the truth is. Truth isn’t about what you think is true, or a “personal truth". (for example, children believe that Santa Claus, the Tooth Fairy, and the Easter Bunny exist. We could call that their “personal truths.” )

Truth is verifiable. Truth can be known. Sometimes, yes, there is mystery! We will never understand everything—and we’re not meant to. Some things are just beyond our reach on this earth. But we know the truth of faith because it’s able to be studied. It’s able to be seen. We believe in the truth of Jesus Christ. At Mass every week, we say the “credo”—”I believe”. This isn’t what just I believe, or what you believe, or what the pope beliefs, or what Fr. Patrick up on the altar believes. It’s what we have always believed, as a people, a family of faith.

If you are Catholic, you have to know what you believe, and why you believe it—and you have to assent to it. You can’t just say, well, that’s fine for you, but I don’t believe in Transubstantiation. (You would be….wrong!) I don’t believe in the Church’s definition of marriage. I don’t believe in Hell. Etc.

Truth is truth whether you believe in it or not. People believed the earth was flat—but it wasn’t. People believed that slaves weren’t people—but they were. People believe that unborn babies aren’t people—but they are. See how this goes?

It goes without saying that the truth needs to be spread far and wide. That’s part of what Dominicans do.

But, the question is “how to do it.” As the Wicked Witch of the West said, “These things must be handled delicately.” We can’t be too nice that we deny people the truth—because the truth sets them free, and truth is the best thing you can give someone! But we also can’t be so awful and hard-core that we turn people away from hearing the truth and listening to it.

Let’s take a story from the Bible. It’s one that’s familiar to everyone—the story of the woman caught in adultery. I’m going to quote it here, so we can all have it freshly before us:

John 8:3-11

The scribes and the Pharisees brought a woman who had been caught in adultery, and placing her in their midst they said to him, “Teacher, this woman has been caught in the act of adultery. Now in the law Moses commanded us to stone such. What do you say?” This they said to test him, that they might have some charge to bring against him. Jesus bent down and wrote with his finger on the ground. And as they continued to ask him, he stood up and said to them, “Let him who is without sin among you be the first to cast a stone at her.” And once more he bent down and wrote with his finger on the ground. But when they heard it, they went away, one by one, beginning with the eldest, and Jesus was left alone with the woman standing before him. Jesus looked up and said to her, “Woman, where are they? Has no one condemned you?” She said, “No one, Lord.” And Jesus said, “Neither do I condemn you; go, and do not sin again.”

Do not sin again. That’s the crux, really. We are all sinners. Every single one of us. I am, you are, everyone. None of us is without sin. But Jesus doesn’t say to the woman, “Oh, what you did is fine. Go ahead, go home, it’s all good.” He said, I don’t condemn you. But don’t sin again. That’s what happens when we go to confession—we have to promise to try not to sin again. We can’t just think, oh, I can do what I want, because confession!

Jesus loves us more than we can possibly imagine. And because he does, he doesn’t want us to keep messing up. It makes him sad! Do parents like it when their kids make bad choices? No! But are they angry? Maybe. Are they disappointed and sad? I think this is probably more likely. (I mean, they might be angry at first. But I think then it becomes more sad/disappointed.)

When we discuss heated issues in the twenty-first century, we are not good about being gentle about it, like Jesus is here. Now, yes, Jesus also turned over tables in the temple. Sometimes we can be righteously angry. I get righteously angry whenever I talk about disabilities or abortion. That’s my thing. But if I slip and start calling people names, or want to incite violence against them, I am sinning.

We can be preachers of the word. We have to be, both preachers of the word and doers of it. We have to live the life of Christ. Sometimes that means standing up for people. Sometimes that means living a quiet life of witness. Sometimes it means both!

If you want to make your point, if you want to convert people, you aren’t going to do it, usually, by violence or hatred or name calling. We need to stop doing that. We need to do it like St. Dominic did it—gently, with facts, with truth, and then….step back. See how it goes. Conversions aren’t instantaneously. St. Dominic famously cried, “Oh Lord, what will become of sinners?” He cared about them. He didn’t just want to score a point like in a college debate match. He didn’t want to just win. He wanted the other person to see the truth because it would save them.

Politics in America has always been nasty (see the Election of 1800!). But we must stop seeing each other as enemies across a divide. We have to state our position, but also realize that we can be friends with people who don’t vote the way we do. In fact, we are required to love them.

I know things get heated in the public realm. I worked in politics for 10 years. I saw it, up close and personal. We cannot want to kill our opponents, guys. We can’t approve the shooting of congressmen and women because the victim disagreed with us! What kind of people will we be then?

A story was told to me by the first legislative aide I worked with, who had been in the senate a long time. She said that senators used to argue like crazy on the floor, and then go out to dinner together. They were friends with each other. That was becoming rarer and rarer

Christianity isn’t a religion for wimps. Jesus doesn’t ask us to be a doormat. He asks us—and St. Dominic shows us how—to preach the truth, to live the truth with our lives, to pray for our enemies. We can have discussions—even loud Italian ones! We can be passionate! I’ve always been passionate when talking about the Church.

But there’s a fine line between being passionate, and being so whipped up into a frenzy that you can’t see the human being on the other side.

St. Dominic saw the humanity in the people he met. That’s what drove him to preach—his concern for them and his love for Christ.

Does the same thing compel us?

Trust, Courage, Faith, and Transplants

I had a holy hour last week before Mass, and as I was paging through my Magnificat, I noticed a few things.

Do you see them, too?

Matthew 9:1-8

The Healing of a Paralytic. He entered a boat, made the crossing, and came into his own town. And there people brought to him a paralytic lying on a stretcher. When Jesus saw their faith, he said to the paralytic, “Courage, child, your sins are forgiven.” At that, some of the scribes said to themselves, “This man is blaspheming.” Jesus knew what they were thinking, and said, “Why do you harbor evil thoughts? Which is easier, to say, ‘Your sins are forgiven,’ or to say, ‘Rise and walk’? But that you may know that the Son of Man has authority on earth to forgive sins”—he then said to the paralytic, “Rise, pick up your stretcher, and go home.” He rose and went home. When the crowds saw this they were struck with awe and glorified God who had given such authority to human beings.

And here….

Matthew 9:18-26

The Official’s Daughter and the Woman with a Hemorrhage. While he was saying these things to them, an official came forward, knelt down before him, and said, “My daughter has just died. But come, lay your hand on her, and she will live.” Jesus rose and followed him, and so did his disciples.  A woman suffering hemorrhages for twelve years came up behind him and touched the tassel on his cloak.  She said to herself, “If only I can touch his cloak, I shall be cured.”  Jesus turned around and saw her, and said, “Courage, daughter! Your faith has saved you.” And from that hour the woman was cured.

 When Jesus arrived at the official’s house and saw the flute players and the crowd who were making a commotion,  he said, “Go away! The girl is not dead but sleeping.” And they ridiculed him. When the crowd was put out, he came and took her by the hand, and the little girl arose.  And news of this spread throughout all that land.

Do you see it?

Before Jesus heals these people, he tells them to have courage.

A lot of people tell me I am brave.

I am not brave.

Doing what you have to do to keep on breathing is not brave. It’s necessary. Now, granted, I had to make the choice to go for transplant. If I hadn’t done that, then I wouldn’t be sitting here, writing this, precisely fourteen years later. In fact, as I write this (at 10:47 a.m.), fourteen years ago, I was in the OR. My surgery began around 6:45 in the morning (at least that’s when the epidural started, I think). So, yes, I made the decision to go for transplant. Was that brave? I don’t know. I don’t personally think so.

Really, though, a lot of the time, I did not feel brave. I did not have the courage Jesus is telling these people to have.

But as I looked at these verses, I thought, this is right. They need courage for what’s about to happen. Because it’s scary, to be suddenly plunged into a world you didn’t think was possible, something you had hoped for, but didn’t think would actually happen. It’s sort of terrifying.

These people had faith that Jesus could cure them. And I had faith, too. I’ve always had it. I’ve never doubted my faith. But did I have courage? Did I trust Jesus?

Ah. That’s the slow growing bloom of faith. Faith is the seed. But courage and trust? That’s later. That’s a result. It’s the result of a lot of dark nights and lots of tears and feelings of this is never going to happen.

And I can say that even if I hadn’t been transplanted. Remember, God is always good. I would’ve been cured, either in heaven, or here on earth. And I was lucky that I got my miracle here. Some people aren’t as lucky as I was. That’s the sobering fact.

Throughout, though, Jesus tells us to have courage, because something is happening. And it might be something great. But in the moment, there is fear. There is death, as we see with the little girl. But then…

life.

Even if it’s life on the other side of death. We know how this story ends. We know that death is not the winner.

Trust in Jesus sounds great, and it is great, but until you’ve really had to surrender your will, to say I have no control over this—that’s when you need the courage. It takes courage to trust in God.

Jesus knew that. And I think that’s why he tells these people to have it, to grasp it, to be strong in the moment. Because in the moment when the miracle happens, you might feel like you’re going to drown—save me, Lord, I’m perishing!

If I look brave, it’s really because Jesus gives me the courage to take the steps forward. It’s not my courage at all. It’s his.

My Dominican saint is Bl. Lucy of Narni—and yes, she’s the one C.S. Lewis used as inspiration for both the name “Narnia” and Lucy Pevensie. I’ve always loved Lucy. But remember, Aslan tells Lucy, “Courage, dear heart.”

We need to be reminded to have courage, to keep trusting.

A Wedding In the Mountains: Melanie and Jason

(Photos by Mel’s photographer, not me! :) )

My sister got married last week, and I have a new brother!

via GIPHY

We’re excited about this. :)

The wedding was on June 13 at Our Lady of the Mountains Catholic Church.

This is a beautiful church! Pope St. John Paul II visited it during World Youth Day in Denver in 1993.

The church was stunning……so here are pictures (especially for family members who couldn’t come, but really, for everyone, because we all need beauty!)

St. Francis with Brother Elk. I saw quite a few people coming to pray here while we were there. It seems like a really popular devotional spot in Estes Park!

Isn’t she gorgeous?!

The stained glass windows around the nave showcased the sacraments. Thought this one was especially appropriate!

The altar and tabernacle—the tabernacle has the five loaves and two fishes on it.

View from the doors

It’s a really gorgeous church, with a statue of the Sacred Heart, a St. Michael window in the choir loft, and last but not least, a really amazing priest! He gave a beautiful homily on how marriage is about joy and sorrow, how marriage really begins the time you have your first fight (basically) or have a bad/sad moment, and how marriage is about being selfless, instead of selfish, because you’re one now. You’re not two. It was appropriate he spoke about joy, because that’s my sister’s middle name! I wish I had a copy of the homily, it was so inspiring.

The reception was intimate, held at a local steakhouse. But there was still cake (well, cupcake) smashing….

And a first dance….

I was a bridesmaid, so I was busy throughout the day and didn’t have time to take a ton of pictures, but that’s what I have. :)

We stayed at The Stanley Hotel (AKA, where Stephen King got the inspiration for The Shining) and my room had a great view:

So, that’s all I have right now, in terms of photos, but it was a lovely, intimate wedding in a gorgeous place, and I’m so happy for my sister and my new brother in law! :)

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

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

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

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

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

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

So, yeah, it’s a lot.

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

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

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

Because that doesn’t exist.

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

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

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

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

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

(Not too much freedom. But enough freedom.)

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

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

But here’s what it comes down to:

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

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

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

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

Go live your life!

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

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

Seriously. Do what the sign says.

Live your life. Take your brain with you.

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

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

Orchard House

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

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

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

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

I love my desk!

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

The Week of Everything

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

This is the week of everything.

I’ve started writing the book.

I will sign the contract this week.

I’m moving.

Yup, it’s a lot.

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

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

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

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

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

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

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

Listen Up! (For World Hearing Day)

(c) Wikipedia

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

So if you missed them the first time:

Part I: How I lost my hearing

Part II: How the Cochlear Implant Works

Part III: Living with a CI

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

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

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

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

It’s a trade off.

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

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

(Also, SUPER cute video at the bottom!)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

And the follow-up, Generation Hope:



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

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

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

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

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

(c) Channel 4 (UK)

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

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

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

Think about this. BAKING! With six fingers!

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

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

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

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

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

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

Vulnerability and Community

Jules Adolphe Breton, The Song of the Lark

I am really, really bad at being vulnerable.

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

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

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

We need community.

So why don’t we ask for it?

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

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

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

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

Community should do all those things.

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

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

That’s community.

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

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

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

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

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

Burdens

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

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

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

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

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

“We want you,” my parents said.

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

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

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

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

• Monthly blood draws when I was a toddler.

• Driving to Cleveland in a snowstorm for an appointment.

• Many many many overnight hospital stays

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

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

• Many insurance phone calls

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

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

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

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

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

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

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

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

Re-set for Advent

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

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

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

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

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

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

An ornament I made in 8th grade art class.

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

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

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

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

(c) Erica Kay Photography

and some theology

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

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

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

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

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

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

Because it doesn’t work that way.

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

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

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

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

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

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

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

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

He always loves you, too. No matter what.

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

—John 9: 1-3, NABRE

What people say

Roses outside the parish priory

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Sage's Shawl

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.