Seven Quick Takes No. 128

I. 

ICYMI: I wrote other things than the 30 Days series this week! Here's a post on the Four Last Things--in time for Halloween. (Or it was when I posted it!) And part II of my Houston Postcards.

II.

I had clinic on Monday. The X-ray is good, the PFTs are in their normal range, so that's all happy. The biggest happy, though? I got to go off prednisone! Yayyyy!

Prednisone is a steroid that does some nasty things to your body. It keeps inflammation down, and it's widely used in the transplant world. In other types of transplant, people can go off this drug after a few years. In lung transplant, that's much less common. So I knew that there was a good chance my doctors wouldn't let me go off it. But I'm 11 years out, I'm stable....I might as well ask!

"These lungs are basically yours," my doctor told me, so he didn't see a problem with me trying it. I have to go back for lung function tests (PFTs) in December, to make sure that nothing evil is happening in my lungs. But right now, I am off prednisone. 

III. 

I'm not going to lie: the first few days of this have been rough. After only seven days, your body adapts to prednisone and makes changes in a lot of ways. I've been on it for eleven years. Tuesday, Wednesday, and yesterday were a bit tough as my body adjusted to being off it, especially in the muscle/joint department. They liked steroids. I'm hoping that now that I have good lungs that are not full of Evil Bacteria, my joints will be happy without the prednisone. (CF people often have a sort of quasi-arthritis--it's not "real" arthritis, but joint pain, stiffness, etc. happens.) I really didn't miss all that insanity, so I'm hoping that they're going to be happy without the pred. 

IV. 

On Wednesday I got to see one of my favorite singers, Canadian artist Loreena McKennit. If you're not familiar with her music, here's a few tastes: 

She's hard to categorize; sometimes she's labeled "Celtic", sometimes "new age", and sometimes "world", but I just say she's great. She rarely tours, and very rarely tours in the U.S., so when tickets went on sale for her one concert in town, my friend Suellen and I jumped on them.

Our AP English teacher, Mrs. Low, had introduced us to Loreena's Music, with "Lady of Shalott" and "The Highwayman"--so we've been fans for a long time now. (Yikes, 17 years!) Hearing her sing "The Lady of Shalott" in person has vastly added to my lifetime happiness. 

V. 

I'm also doing NaNoWriMo! This is my fifth year. I'm writing a story about a girl who enters a monastery. I've been wanting to write a novel about nuns for awhile, but having seen a lot of recently released novels that paint nuns in a less than flattering light made me move this story forward over other NaNo ideas. It also has a strong ballet component, so I'm writing about two pretty rarefied worlds in one novel. (And no, it's not like the ballet in Trouble With Angels. Ha!) I'm going to hit the 10K mark today. 

(If you're not familiar with NaNo: The objective is to write a 50,000 words novel from start to finish during the month of November.) 

VI. 

As soon as I hit 10K today, I'm watching The Crown on Netflix. Seriously. I love Claire Foy, I love the Royals, I love Netflix....it all works together for pure binge watching enjoyment! (And there's going to be a second season! WOOOOO!) The goal is to have 60 episodes over 6 seasons. So Claire Foy is playing Queen Elizabeth II in the early part of her reign. I'm so excited. Seriously. Royal geek, right here. 

(And Stephen Daldry is directing episodes! He directed one of my favorite movies, The Hours.) 

VII. 

OK, wow, that's enough fan-girling for one post. Sorry guys. :) Have a great weekend! 

Next week--my October reading wrap post. It's long! It's fun! 

You Get What You Get

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

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

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

Instead: 

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

Yeah. 

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

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

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

Um.....because that's what you get? 

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

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

I don't understand it. 

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

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

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

Why "powering through" illness is a bad idea

Not a good idea when you're sick 

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

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

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

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

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

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

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

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

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

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

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

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

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

Hospital Hair Salons, Part II: Troubleshooting Superbugs!

You may recall last week's post about Hospital Hair Salons. I got a lot of positive feedback on Facebook and in the comments here about this, so I think it's safe to say that this is an idea whose time has come!

That being said, it's also an idea that requires a wee bit of troubleshooting. Even if it's a great idea (which we all think it is!), there are things that need to be worked out in order for it to be really feasible in a hospital setting.

One of the things we need to consider is the ever present threat of germs. If you're in the hospital, you're....sick. So we have to make sure that people who are sick don't get other people sick, and that people with similar illnesses are separated from each other, if needed (i.e., CF patients. We're not allowed to be within six feet of each other. I'm not kidding. I'm not sure how this works in homes where there is more than one person with CF, but....) 

So, inspired by Piper, I began to dig around on the Internet and found....

portable shampoo bowls!!

Is this not awesome? Adjustable height, so everyone can use it! You have to supply your own water source, but just about every hospital room has a sink, so there you go. Fill up a bucket for the water, drains into the sink. Bazinga! The bowl is tilt-able, so you can use just about any chair with it. Grab one from the nurse's station, or even the ones that are in the room, and there you go (My hospital has chairs that recline in the rooms. I realize this might not be the case in every hospital.). 

This model is $300, but on Amazon, it's $74. That's right. SEVENTY FOUR DOLLARS. 

Add a spray so you can wet and rinse the hair--$5 more. 

Another option: This guy, which is for people in wheelchairs or with limited mobility. I'm not sure if this would be my first choice, but hey, this would work for those in wheelchairs and it's better than nothing. 

To protect the patient and keep water from getting on those areas that can't get wet, add a salon cape: $9.18

So, for the bowl, the sprayer, the cape--$88.18. That's for one "set". Two of them? Less than $180. 

With the portable set up, you eliminate worries about infection spreading among patient populations. Someone can go into the patient's room and wash the hair--or even a parent or friend can do it, if one's available. I wouldn't want my brother to wash my hair NOW, but with a setup like this? I could totally teach him how to wash girl hair. :) Patient privacy is preserved, and everything you need is right there, able to be brought into the room and easily connected. (I'm hoping it's easy. If it's not, then we'd need another system. But it looks pretty simple.)

A patient could request this the same way she requests the Nintendo cart (yes, my hospital used to have a Nintendo cart), or a massage therapist, or the child life people, or whatever. You just ask the nurse to call for it, and someone brings it up.  Easy peasy. 

The hospital doesn't have to build a room or install any equipment, like with the previous idea. This is totally portable, easy to take apart and sterilize, when necessary, and can go anywhere. 

What do you guys think? 

Hospital hair salons: An idea to support mental and physical health

I know that, when someone says, "You know what hospitals need?" your first answer probably isn't "a hair salon!" 

And, OK, it's probably not the most pressing need in hospitals. I know that. I'm very fortunate to live where I live and have access to world-class hospitals that are fully stocked with vital equipment, supplies, drugs, and staff. I don't have to worry that the hospitals don't have an X-ray machine, or lack sterile needles. 

But more and more, hospitals are focusing on providing not just the basics of health care, but providing a more holistic approach to care. The hospital I'm at most frequently has a massage therapy department, child life specialists, play groups for all ages, teachers who tutor students, and evening entertainment is often scheduled. Even in adult hospitals, there's a focus on providing creature comforts, like lots of TV channels, increasing the quality of the food served to patients, and improving rooms so that patients have more privacy and comfort. 

I think having a hair salon-like area would fit right into this scheme at many hospitals. 

Think about a regular week for you. How often do you shower/wash your hair? And if you're like me, you don't just take baths for utilitarian reasons. You take them to relax, unwind, or just enjoy the hot water and bubbles. 

When you're in the hospital for a long time (as in, more than three days), basic things become a lot of work. Things like being clean, that people in the real world take for granted. Seriously, when was the last time you got in the shower or the bath and thought about how you would be able to wash yourself if you had medical equipment and IVs attached to you? How could you wash your hair if you couldn't get one of your arms wet (Or either of them)? Or what if you couldn't get into a tub or shower at all, because you have chest tubes coming out of you, or you were getting constant IV infusions? (We won't even talk about things like shaving your legs. That's just well-nigh impossible.) 

I have, in the course of 34 years, been subjected to every kind of hospital hair washing arrangement that can exist. Let me count the ways:

1)  The communal bathroom: where the floor has one bathtub, which you have to watch like a hawk to get. Then you lock yourself in--with a parent, or someone to help you, because you can't wash your hair yourself. Mom would wrap Saran wrap around the parts that couldn't get wet, try to tape it up with medical tape (I say "try" because the tape wasn't really designed to be sticky in the humid conditions of a bathroom), and then wash my hair while I tried to keep the improvised "dressing" from getting wet. The benefit to this was that at least I could wash my body.

2) The "bed basin" method: you stay in bed, and a small, inflatable basin (it basically looks like a kiddy pool for Barbie dolls) is put under your head. Then you can get your hair washed, you don't have to move, and everything stays dry. The problem is, you didn't wash anything but your hair, and if your hair is long, combing it out after this method is a disaster. It's also hard to get all the shampoo out, because you're working with a small pool of water. So you don't get really clean hair. Meaning, you have to do it again, soon. Boo hiss. 

3) The lean over the sink method, forward: terrible. Same issues as above, water gets everywhere, it's a general mess, and if you have anything on your chest (like, say, my port), you are frantically trying to keep it dry. Not good. 

4) The shampoo "cap": It works in a pinch. But generally your hair looks and feels awful after this has been used. It looks like a shower cap with shampoo "built in". You add water and there you go. Not good. The much better option is dry shampoo (which is a godsend, let me tell you.). 

5) The lean over the sink method, backwards: At least you don't have water in your face with this method, or running all down your front. However, it's rather painful if you have anything attached to you--and the sinks aren't usually at a good level. I remember being put on a tall chair from the nurse's station (on wheels!), then titled back. Water, water everywhere. 

6) The "Shower seat" method: This involves taping yourself down, again, so that what's supposed to stay dry, stays dry, and you basically make a mess of the bathroom. You sit on the shower seat, while you use a hand held shower head to wash your hair. It's not the best method. (Mostly because you have ZERO privacy. At all.) 

You can see, all these methods are sort of terrible. They are difficult, they are messy, they take a lot of time, and they are not mentally or physically beneficial. I loathe washing my hair when I'm in the hospital. It takes--not kidding--about an hour, to gather all the materials, to tape myself up, and then try to do it with minimal issues for the staff, because they have enough to do without making sure I have enough towels. And we won't even talk about the hair dryers that you're given. (My hospital doesn't like you to bring in your own hair dryer. Strange, but true.)  

Some fantastic nurses try to work a hair washing into the day, coming in when they have down time. And I appreciate this. But, again, there's usually not a lot of privacy. I know, I know--nurses have seen everything. But I'd like some mystery left in our relationships, here! 

I want you to image with me for a second. Imagine you are sick. You feel like crap. It takes a huge amount of effort to do anything, including go to the bathroom. You know you should take a shower, but it takes a ton of effort. You know your hair looks awful, but you can't wash it on your own. So on top of feeling like crap, you also look like crap, and this makes you feel worse. 

What we need are hospital hair salons.

They do not have to be fancy. They could be one or two salon-style sinks and chairs, where patients could lean back--and not worry about hurting themselves or the equipment--and have their hair washed well, with clean water, in a sink that is appropriately deep. So the shampoo isn't getting the hair dirty again, and you're not using dirty water, and everything that needs to stay dry is staying dry! The body isn't in a weird position--it's supported by the chair. A towel cushions the sink neck rest, just like at a salon, so water is absorbed and not running down the back of the chair or the patient.  

You need to have someone who can wash the hair, comb it, dry it--with a good hair dryer, not one from 1970. That's it. No styling involved (unless, you know, someone really wants an updo for that meeting with the surgeon in the morning). Just clean, combed, and dried hair that will last longer and look better than anything heretofore seen. For the rest of the body, the patient can get into a tub and get clean, without worrying about hair or getting things wet. (In my hospital, each room now has a rather shallow tub. It's not meant for bubble baths, but you can get in and out very easily, and you can keep things that are on your chest or arms dry. It's revolutionary, I tell you.) 

You wouldn't need professional hair stylists, just anyone who knows how to give a good shampoo and can work a hair dryer. Instead of it taking an hour, it could take 15 minutes. Nurses wouldn't have to wash patients' hair anymore (with the exception of very sick patients who couldn't be moved). Parents wouldn't have to do it. I always feel so much better after a bath, and having clean hair is a great thing. I hate the feeling of dirty hair. (And really, how hygienic can that be?)  

A very quick internet search reveals that a shampoo chair costs range widely, but you can get one for under $200.  A porcelain shampoo bowl costs around $300 (plastic knocks the price down about $100.) Hair products (shampoo and conditioner) wouldn't have to be expensive--you could even use the hospital stuff, or whatever the patient brings with them (yes, I bring my own shampoo to the hospital.) A decent blow dryer? $50 or so.  So let's say $600 per setup, to give us a cushion. $1200 for two. (Materials that can be sterilized/wiped down between patients, to keep things appropriately clean, are tantamount, so that might force a certain material over another.) Obviously you'd have to have plumbing arranged appropriately, and a space that's dedicated to this. But when you think about how hospitals have showers in the ICU for parents/family members to use, it's not too crazy. 

$600 is not chump change. But the benefits to patients, families, and staff would be incredible. I've been in the hospital for a month at a time.  There are people who spend months in the hospital. How would you feel if you weren't really able to wash your hair--or have someone else do it properly--for months? You'd feel pretty gross after awhile. I guarantee you. Dry shampoo only does so much. Sink baths are cute for babies, but not for anyone else. 

When I floated this on Facebook, I got a huge responses from women who have been in the hospital and understood this. But it wasn't just patients--it was parents, too, who have boys and girls who spend lots of time in the hospital, and thought this would be a good idea. I was actually surprised by the amount of people who liked this idea.

So the question then is--how would we actually get these in a hospital? What are the logistical issues that would keep a hospital from having a set-up like this? 

This isn't just for kids. It's for anyone who's in the hospital for a long time. You want to feel human, even when you're sick. A hospital hair salon (or blowout bar, I guess this is) would do a lot to increase patient well-being, both mentally and physically. 

Can we make this happen? 

The Fight for Joy

The tagline of this site is "Celebrating Ordinary Joy." And that's what I try to do on a daily basis--to remember that this life is so incredible, such a miracle, that everything is Joy. The brown bananas in the freezer awaiting their transformation into muffins; the roses and sunflowers in a vase on the counter; even the trash bags that need taken out. Everything is a gift. 

But that doesn't mean it's easy. I never wanted a Pollyanna tag line, where we play the glad game, and blithely ignore realities. Sometimes, reality is hard. 

Last week, I felt as low as I've ever been. I tried all my normal things--journaling, napping, bubble baths, talking to friends, a holy hour, a weekday Mass. When I go to Mass, no matter how crappy I might feel, usually the consecration floods me with peace. Not on Friday. On Friday I was totally just at Mass. I didn't feel a thing. It was like robot-me. 

I talked to my therapist (Most people, post-transplant, see a therapist. It's par for the course.) I basically didn't talk--I sort of fell apart. I was a mess. I wasn't sleeping, I wasn't eating right, I was forgetting conversations I'd had two days ago--and I don't do that--and I had no idea why. 

Joy was really far away. Incredibly far away. I thought about the tagline and I laughed. Joy? Really? JOY right now? 

No Joy. 

On Saturday, I was very gentle with myself. I read a book suggested by Elizabeth--The Awakening of Miss Prim--and I re-read the Restore workshop pieces. I went to Mass. I made dinner. I slept when I could. 

Today, I had a doctor's appointment. It was my normal clinic visit, but I was anxious because I didn't know what was going on with me. I wanted to find out. So I spilled out all my symptoms in a flood of words. 

The doctor and the nurse listened, and we figured out what it is. It's nothing major--it's just my body adapting to different drugs, and readjusting hormone levels and all those delightful things that happen when you're taking very powerful medicine. 

So my body has to readjust--and this will happen both physically and mentally. As it readjusts, things will go back to baseline. But until then, it's measures to fix the symptoms--sleeping when I can, getting good food and exercise, having the A/C set just about arctic. :) 

I'm so happy that I'm not crazy. 

But during those foggish days, days when joy seemed so far....it was hard to remember to look for the ordinary joy. 

But it's there. It's always there, even when I couldn't see it, or couldn't feel it. 

When it's elusive, hang on. Keep looking. Find that one thing. It's there. And that one thing can be a crack of light that you need to keep looking, keep seeing....what keeps faith. 

Seven Quick Takes No. 115--Not to go all Boromir on you....

linking up with Kelly and the gang. 

I. 
There is logic in that title. Really. :) 

So last week I was watching Army Wives on Netflix (Yes, sometimes I watch soap-ish TV. DO NOT JUDGE.) There was a kid with CF who was brought into the ER with a collapsed lung.

Now, to treat a collapsed lung, an interventional radiologist (so no, not just anyone) has to insert a chest tube, in order to reinflate the lung. It requires cutting. It requires stitches. It requires boxes. It basically sucks. It's my second-least favorite thing to have done, medically. 

(What's first? A pH probe. Seriously. Don't ask. 

Oh, you asked?  OK. 

A pH probe involves sticking a tube up your nose, down your throat, and into your stomach. And the tube sticks to your face and dangles outside of your body because it's attached to a stupid meter. It sucks. A lot. And it hurts. A lot. Basically, it's a tool left over from the Inquisition.)

So anyway, while watching the show--the kid had no tube left in. It was basically, we stick in a tube! The lung reinflates! Let's go home tomorrow! 

Um, no. 

Hence, the below photo, which I created to express my displeasure. 

One does not simply not keep a chest tube in. Sorry. And to remove it also requires an interventional radiologist. Yeah. Stitches, remember.

II.

So, please make the above meme a thing. I think it's awesome and the Internet needs it! 

III.

I have a clinic appointment on Monday, so I'll report back with the results when I get them. Oh what joy, oh what rapture. :) The nice thing about clinic visits in the summer is that the rush hour traffic is significantly better. 

IV.

The recap from this week, in case you missed it: 

Summer scribbles: A taste of summer (My strawberry salad recipe) 

Postcard: Chicago

Catholic 101: Apostolic Succession

V.

Also, I got a picture with this guy:

You know, some random Canadian. ;-) 

The dress is from Shabby Apple. It looks a bit better on TV. I think. Since the photos are taken during one of the commercial breaks, you don't really have time to primp. 

VI. 

The show airs on July 18th! 

I will also be on Jen Fulwiler's Radio Show that day, to tease the episode. :) If you have Sirius, be sure to tune in! I'll have more info as we get closer.

VII. 

Another thing about that photo? The microphone pack is attached to my bra strap. Really. They have a guy who attaches all the microphones. He asks before he attaches it. And he's very professional about it. But that's where the microphone pack is. They remove it before they shoot the "let's all talk at the end of the show" thing, so you won't see it. :) 

Seven Quick Takes No. 113

I. 

First up--this week's post roundup: 

SITS girls Summer Scribbles No. 1

Catholic 101: Those "Screwball Apostles"

II. 

I'm going to Pittsburgh this weekend for my godson/cousin's high school graduation. He actually graduated last week, but the party is this weekend. I can't believe he's that old, first off. I was fifteen when he was born! He'll be going to Pitt to study computer science. He's a good kid, and I'm so lucky to be his godmother.  

III. 

Just a reminder: my Jeopardy! appearance is July 18th!!!

IV. 

(Yes, that merited the cool font. You know it did.)

I'm actually sort of nervous about people watching it. I can see the whole slew of tweets and Facebook postings of "YOU IDIOT! How did you not know THAT?" And honestly, there's at least one question I'm still beating myself up about. :-P 

I did manage to impress Alex T., though. I did. But that is a story for the day the show airs. :) 

V. 

I did manage to whip the sketchbook out this week, not once, but TWICE! Oh yeah! 

Lunchtime sketching--lamp and a wonky pitcher. :-P (I was trying to do single line contour on that guy, so....)

Plant at Dawes Arboretum. 

VI. 

California legalized assisted suicide this week. Why that's a bad idea. 

VII. 

And my hockey team is continuing to hate me--game 6 in San Jose.....

Seven Quick Takes No. 112

I. 
Previously on the blog, here (in case you missed any of it!): 

Sugarcoating Suicide: Me Before You
Ordinary Joy
Summer Reading

That first one has become particularly relevant since I found out that the state of California will legalize assisted suicide next week. 

II. 

In My Summer Reading post, I talked about Eligible. Well, I finished it yesterday, and it was terrible. Terrible isn't really a strong enough word for how bad it was, acutally. If you are at all tempted to read it, please, for the Love of All That is Holy, go pick up the real Pride and Prejudice, or watch the Only Version That Exists In My World. 

III. 

Also in the world of Jane, I'm re-reading Persuasion. If you haven't read that one, go for it, please. It gets overlooked sometimes!

IV. 

If you're a Facebook friend of mine, you're probably wondering why, around 8:00 every other night, my feed becomes incomprehensible with sports jargon. It's because the Penguins are in the Stanley Cup Finals, and I adore hockey.  

My first NHL game was against the Hartford Whalers (Wow, I just dated myself) at the old Igloo--the Civic Arena-- in Pittsburgh. I think this was in 1990. But anyway, I have been a lifelong fan since then. Poor Mary, when we were in LA, had to put up with my attention totally deviating from her if hockey came on the TV when we were eating. I'm like a dog going "SQUIRREL!" 

So, until the series is over (and hopefully the Pens will sweep and it'll be over next week, and we'll have our Fourth Stanley Cup victory), there might be some weird Facebook posting. :) 

V. 

If you're wondering why I root for Pittsburgh teams when I live in Columbus--it's because my parents are both from Pittsburgh. In fact, they were born three days apart (although in different hospitals), and Dad is a Pitt and Carnegie Mellon graduate. Mom used to work at Pittsburgh Children's before she married my dad. So all of us kids were brought us as Steelers, Pirates, and Penguins fans, and it stuck. Even though my brother went to OSU, we're not very strong OSU fans. 

And I hate calling it The Ohio State University. Some of my friends do it just to spite me. :-P

VI. 

It go so hot, so fast here. It's like we didn't really have spring at all. It was cold, and then "boiling lava hot" (as Jim Gaffigan says in his Hot Pockets sketch). Oh well. At least the pool's open and my A/C works!!!! 

VII. 

Finally--do any of you use fountain pens? I just started and I have to say, I love them. I feel very writerly and Jane-ish (although I know Jane didn't use them). Ink spots on my fingers? Fun! 

Sugarcoating Suicide: Me Before You (Or: Why you should not read this book or see this movie)

I get really, really tired of defending my existence.

If it isn't people telling me that my transplant was immoral, it's people who think that assisted suicide for disabled people is a good idea, and a sign of love. 

Yes. Because, you know, nothing says I love you like KILLING YOU. 

Let's look at the cognitive dissonance, here: When someone--say, Robin Williams--commits suicide, social media is flooded with messages like, "suicide isn't the answer", "please get help-- don't be afraid of getting it", "I wish people knew that they could talk to me if they're ever feeling like this." Etcetera. You all know how this goes. People are sad, as they should be. People continually say that suicide is NOT a good option. And it's not. 

But: when it's a disabled person who kills himself, oh, well, that's love. 

And that's exactly what happens in the new movie Me Before You, based on the novel of the same name by JoJo Moyes. In it, a woman falls in love with a quadriplegic man she's taking care of--but, oh, he wants to kill himself. Because, you know, life in a wheelchair isn't worth living. And if she REALLY loved him, she'd go with him to Switzerland and be there when he kills himself. Because that's love: supporting you in all your bad choices! 

No. You know what love is? Love is what Mary Lenaburg and her family did for her daughter, Courtney. Love is what Kelly Mantoan and countless other parents do every day for their kids who need their help. Love is my mom washing my hair when I'm nineteen years old and her back hurts, or my dad staying up during countless ER runs with me, or my siblings learning how to reconstitute and push IV drugs. THAT is love. 

My life isn't perfect. Show me someone who says his life is perfect, and I'll say that this person is a liar. Did it suck, being twenty-three years old and not being able to brush my teeth without sitting down after? Does it suck now, when I have to ask people to repeat things because I don't always understand them, or when my CI malfunctions? Yeah. But I would never, ever say that that was worth being dead. Obviously, I like my life just fine, since I've been to the edge of death and come back from it five times. I must think that something is worth living for. 

When we start sugarcoating assisted suicide--like in The Sea Inside, Million Dollar Baby, and The English Patient--we are trying to make it morally acceptable. We're trying to tell people that suffering is bad and we should avoid it at all costs, even by killing people who are suffering. Guys. That's not love. That's not living boldly, as the movie's tagline execrably proclaims. 

Living boldly is living the way my friend Sage does, while she waits for a lung transplant.  It's what Andi's kids do every day, whether they're running crazily at a T-ball game or singing in show choir. Living boldly is embracing life in all its highs and lows and living anyway.  

I've had people tell me that they would've aborted me, if they'd been my mom. 

To my face, people. 

* * * 

In The Giver, a dystopian novel by Lois Lowry, Jonah, the main character, discovers that what everyone calls "release" is actually euthanasia. In his community, old people are killed, people who break the rules three times are killed, even one of a set of twins is killed. Babies that don't sleep through the night when they're a year old are killed. Why? Because they are inconvenient. Because they make life difficult for the community. Jonah can't live in a system like that, and runs away with Gabriel, a baby that is slated for "release." He risks his own life to save the baby's--because if you try to escape from the community and are caught, you are "released." 

The community's highest value is ease of life. No one experiences pain. No one, actually, experiences any emotions. People take a pill every day so that they don't have emotions. Parents don't have children--they are "given" children, who are born via artificial insemination. When Jonas asks his parents if they love him, they laugh at him and say it's a meaningless word. And thus, the community medicates away their humanity--and kills what is inconvenient. 

Yeah, it's a book--but are we that far off from that? Where do we stop? 

The abortion rate for Down Syndrome kids in the U.S. is 67% In Europe, it's 92%. We are killing babies because they are imperfect. Because they are inconvenient.  This Atlantic headline pretty much says it all--why on EARTH would you keep an imperfect baby? 

People sue for "wrongful birth"--saying that they wish their babies had never been born. Not all cases of CF are detectable in utero, because there are thousands of possible mutations. So if a kid with CF is born, and his parents don't like it, they sue. They can pretty it up all they want and say they need the money for the kid's care--but it's not about money. It's about having a kid who isn't perfect, and someone needs to pay for that. Someone made "a mistake."

Jesus had something to say about this: 

You know who made the "mistake", here? It was God. And no, it's not a mistake. God did all this for a purpose, and for a reason. My crazy genetic code exists to bring Glory to God. That's why I'm here.  

Suicide is not an answer for anyone, at any time. It's not romantic and it's not brave. In the case of assisted suicide, it's reprehensible. 

Life has value beyond its utility. We are not cogs in a machine. We are human beings created in the image and likeness of God. And to purposefully commit suicide is not brave. It's cowardly. It flies in the face of bravery. 

I'm not a hero. I'm not a saint. I screw up. But the answer to challenges isn't to give up. The answer is to live the best you can, in the circumstances you are in. Love is helping people find a way to live--not by helping them die. 

Definitions

A week or so ago, I read a piece on the site The Mighty, which is where people talk about life with chronic illness-or their lives with a family member who has it. I can't find the link for this particular story, but it was written by a mother who talked about how her daughter's illness did define her--and she was sort of glad it did. 

I gotta say, I don't agree. 

I'm a lot of things. 

I'm Catholic. I'm a girl. I'm an American. I'm a dramatic contralto. I'm mathematically impaired. I'm near-sighted. 

These are all things I would list before I say "I'm a girl with a lung transplant." "I'm a girl with CF." "I'm a girl who can't hear."

Why in the world would you want to describe yourself by what you are not, or by what is wrong with you? Why define yourself in a negative way?

There was a student at my college who had a chronic illness. But unlike me, this person definite him/her self (yeah, I'm being really vague, here) by the illness. It was the first thing his professors knew about him. It was the thing she led with. 

This repelled me. My professors didn't know anything about my health until I was in the ICU for two weeks and I was missing class. Then I  (well, my parents) told them. 

Sure, there are things that I can't do. But why would you define yourself that way? "I can't do differential equations." "I can't spell." "I can't swim." Why in the world is any of that important? 

I'm not tossing out the old rag "everyone can do whatever they want!" "You can be anything you want to be!" Because that's crap. It's not true. I can't play in the WNBA. I can't be a swimmer like Michael Phelps. I can't be a prima ballerina. 

Everyone has limitations. It's part of life. None of us are perfect. But why you would lead with that, or make that the focal point of your life, is beyond me. I don't get it.

Is this part of me? Well, yeah. It's a part of me like my hair color or my eye color or my height. But I don't let those things tell me who I am, and that's not what I lead with at a party. 

Pre-transplant, I never really talked about my CF in public at all. Now, I do it because I want to spread awareness of organ donation. But I also think that's there's a fine line between talking about it/raising awareness, and over-talking it to death, and making it the KEY POINT IN EVERYTHING. 

If I could tell parents of kids with chronic illness one thing, it would be to let your kids live their lives as normally as possible. Don't coddle them. Don't make them afraid of life. Don't baby them. And also--tell them that they are more than the strange outcome of their genetics or malfunctioning cells. Yes, they might need some accommodation. Yes, they might not be able to do everything everyone else in their class can do. But that doesn't make them less. Don't define yourself by your limitations. 

Yarn Along No. 45

So, here we are, back to the Wednesday Yarn Along!

I'm on the second book of the Mitford series, and I'm really liking them. They remind me of Alexander McCall Smith's books--everyday happenings, people living lives in their small towns, but you can't stop reading about them and immersing yourself in their world. Mitford is the American version of the Gabarone or Edinburgh of McCall Smith's stories. 

 (And yes....using up that washcloth yarn!) 

Seven Quick Takes No. 105

I. 

The snow is melting! The snow is melting!

Really, I don't mind snow--around Christmas. I do mind it when it's crazy cold and I have to scrape off my car whenever I want to go somewhere, and deal with the ice around my car. But it's going to be 50 today, and almost 60 tomorrow! Yay!

II. 

I'm glad about that 60 in particular because tomorrow is the Columbus Catholic Women's Conference, and last year a huge snowstorm kept me from getting there. It starts at 8, but you have to get there early to get a decent seat--and registration opens at 7. So that means you get up early. And getting up early plus dealing with snow? Just, no. But this year, no snow! No ice! Yay!

I'm especially excited because Jen Fulwiler is one of the speakers.

At Edel with Hallie Lord (L) and Jen Fulwiler (center)

III. 

This week I went to my audiologist and got my cochlear implant (CI) tuned up. That's not the technical term, by the way. I hadn't been to see her in awhile, so I went it and we "reprogrammed" my processor. 

The big difference between a CI and a hearing aid is that a hearing aid just makes sound louder, while I CI helps you understand what the sound is. And if you're like me, and your hearing is basically shot, you need the CI, and not a hearing aid, becaus making sound louder won't help you. The cells in the cochlea have been destroyed, and thus the sound isn't getting processed correctly by my brain. Thus--the CI. An "array" was threaded into my cochlea during surgery, and that relays the sound I get directly to my brain, bypassing the broken bits. 

So anyway, with the programs, I can have various settings depending on what I need at the time. I generally use one that allows me to get a wide array of sounds, but there are ones for when I want to focus on quieter sounds, or when I want to focus the microphone to just the person or people directly in front of me (meaning, where my head is pointed is where I'm going to pick up sound.) 

After we fine-tuned the programs (they're called MAPS, if we're being technical, but I forget what that stands for), my audiologist took me to the booth where they run hearing tests. If you are hearing-impaired, these booths are generally awful because you feel like an idiot. But with the new program, I was able to hear a really wide range of sound at various levels (meaning I detected the sound--I could hear it at all) of pitch and volume. So yay! 

IV. 

The other thing about CIs? They're covered by insurance. Hearing aids aren't. 

V. 

I've been doing a TON of drawing this week. Bust out the paints and pencils! 

This is my Atlantic Puffin. I didn't get quite the result I wanted on the black parts, but I did it on watercolor paper, which has that grain. So, whatever. But how cool is this animal? Orange eyes!

I'm also working on sketching and painting teacups. I need to take some pictures of those, though, to show you. 

VI. 

Reading: Not a whole lot, sadly, other than my Lent books. But when one gives up book buying for Lent...also, the library hasn't had any interesting books on the ebooks roster lately. I love that you can borrow ebooks. No worries about returning things on time!

VII. 

This week in CCD we're doing Sacraments--we've broken them up into parts. The book does a chapter on the Eucharist when we talk about Holy Thursday, so that's coming up. This week we're covering Baptism, Confirmation, and Holy Orders. Next week: Marriage, Confession, and Anointing of the Sick.  

Hitting Rewind

So, 2016 started out with me being sick, but I could still make progress on my goals. 

Then we got a week in to 2016, and that all went out the window. 

I'd forgotten how much pneumonia takes out of you--the whole if I try to get dressed/put on make up/make a meal, I spend the next day wiped out and paying for it. I am feeling better, in that there's much less pain, I can breathe regularly, my heart rate is better, and I can take deep breaths! I'm sure my PFTs will be better on Monday. But as far as "normal activities", not a lot is happening yet, beyond the basic basics. 

That's OK--it just makes my goal tending Powersheets page look a little forlorn, these days. :) 

I go back to clinic on Monday for a follow-up, and assuming we don't see anything terrible, I will slowly start increasing things. But that, I don't just mean activity, I mean daily things, like writing/editing/reading--things that don't sound terribly strenuous, but can be when you're dealing with a limited supply of energy. 

One thing that has progressed, so far, is my art--I'm really glad to have decent brushes now, and to be playing with color and form. I will finish my Sketchbook Skool class by the end of the month, and that was one of my goals for this month, along with editing Tempest (and I did that, too--at least a first pass edit.) So this month wasn't a complete waste, goal-wise. 

And this might sound odd, but--the nurses I had in the hospital were pretty great. I don't mind spending time with good nurses. :) 

So I'm going to ease back into goals next week, and start February with renewed vigor--and hopefully a rescheduled California trip! 

Deciding who lives and who dies

First, we have some OP Power, from Fr. Thomas Petri, who is the Academic Dean of the Dominican House of Studies in D.C. 

A sampling: 

Do we lose something, as a people, when it not only becomes legal but also expected that those with terminal illness should “choose” to die? If the European experience tells us anything, it is that those expectations willinevitably come. As clinicians morally coerce patients to end their lives (or impose that choice themselves) they will say that such is the caring thing to do, to free the friends and family who would otherwise be bound by responsibility. Yet no one is an island. It’s okay to be dependent. And though it’s difficult, we each know we owe constancy to those who need us the most.

This is one of my hot topics, obviously. In some countries, I'd have been aborted, using today's technology. I am genetically imperfect in a variety of ways. I have CF. I have thalessimia minor--and in Cyprus, babies with thalessimia are aborted, to the extent that there aren't new babies born with it. * 

I've been dependent on other people for most of my life, and I will continue to be so. I can't use a phone, so my parents have to make any necessary phone calls for me. My parents pay for my medications that keep me alive, because my salary is so low that there's no way I could pay for all my health care and live independently. My mom accesses my port every month. My life is totally dependent on the drugs I take. Without them, I'm not here. Heck, I'm only alive because someone decided to donate her organs. Like Blanche Dubois, I exist on the "kindness of strangers." 

Is it great, all the time? Well, no. I'd really like to be able to use a phone, but I like being alive more, so I don't begrudge--too often--the drugs that made it necessary for me to have the bionic ear. 

By my count, I've been close to death about five times. I've had some pretty unpleasant hospital experiences. (pH probe, chest tubes--I'm looking at you!). But never have I wished, in those moments, that I wasn't alive for them. 

"Princess, life has it all over death!", The Engineer tells Kim in Miss Saigon. And that's true. Life is the greatest gift we have. It's not perfect. No one's life is perfect. There will be pain. There will be suffering. It's guaranteed. We cannot prevent it. We cannot remove it. 

A fulfilling life isn't about what you can do. Life is precious because of what it is. We are created in the image and likeness of God. The angels envy us. No matter what we can or cannot do, physically or mentally, the most vulnerable among us need protected. Not snuffed out. 

______________________________

* for the Cyrus stat, from Wikipedia: A screening policy exists in Cyprus to reduce the incidence of thalassemia, which, since the program's implementation in the 1970s (which also includes prenatal screening and abortion), has reduced the number of children born with the hereditary blood disease from one of every 158 births to almost zero.[