Emily M. DeArdo

writer

life issues

Burdens

essays, family, life issuesEmily DeArdo1 Comment

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.

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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.




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

Catholicism, CF, essays, health, life issues, transplantEmily DeArdo3 Comments

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

Doctors, Death, and Alfie

life issuesEmily DeArdoComment
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Unless you're brand new, you guys know how i feel about end of life issues. 

But I see that lately, there's some confusion about ethics when it comes to these issues. So, I thought I'd work them out here, from a Catholic perspective, and also from the perspective of someone who has lived with death, intimately, many times. 

The first thing we need to understand: hospice care/ palliative care is not the same as assisted suicide.

Hospice/palliative care is used when a definitive diagnosis of death has come down--usually, it's going to happen soon (the "six months to live" thing), but it doesn't have to be. Hospice is a legitimate choice. Here, the patient has decided that the only thing she wants is comfort care--she doesn't want heroic measures take to preserve her life (meaning, ventilation, ICUs, etc.) The patient wants to die, peacefully, at home or in a hospice care center, with family around. 

I could have chosen hospice care instead of going for a transplant, and it would've been a legitimate choice, because there were no other medical options left. This is what Barbara Bush did at the end--she decided, I don't want all this. I just want to die peacefully, with my family around me. This is totally legitimate. Now, this might involve IV fluids, for comfort, or medication, for comfort. But the person has come to grips with death, and has decided she doesn't want any more medical treatment. Again--this is legitimate. 

When hospice is taken, it means that the patient knows there isn't going to be a cure. Curative treatment has generally stopped. 

But hospice is truly death with dignity. 

Assisted suicide is not. Assisted suicide is when someone gets a medical diagnosis and decides that, instead of dealing with this by the hospice route, it would be better to die now. I have little sympathy for this view. You can read about my feelings here.  

Assisted suicide means what it says--the person wants death, and wants it immediately. This is legal in some states in America. That makes me very sad. 

And this brings me to Alfie. 

I love doctors. Doctors have saved my life. But doctors have also almost killed me. 

Doctors are not infallible. Doctors can be wrong. 

Now, this is where a fine line exists--there are times when families want doctors to be wrong, desperately. They want to believe their loved one is still alive. However

If a person is dead--there are tests that prove this. For brain death, there is criteria. 

If a person is dying, then we generally know this. But this is where it gets tricky. A doctor can say a patient is past the point of no return. Doctors told my parents that, when I was 18 and in the ICU. The doctor, clearly, was wrong. Sometimes doctors don't do the digging. They don't commit to the patient. They just write a patient off. And that leads to, well, she's going to die anyway. 

(We're all going to die anyway....)

But--just because a person is suffering or very ill--that does not mean we move in to kill them

Denying air, hydration, food, to a person in a coma, a persistent vegetative state, or what have you--that is unconscionable. That is not the same thing as hospice. That is killing someone. It's no different that putting a pillow over someone's face.

In case you're new to the Alfie case, quick summary--the boy has a neurological disorder that the doctors haven't figured out. It's destroying his brain. The doctors have decided that nothing more can be done, and so they took him off his ventilator. Alfie is breathing with only the assistance of oxygen cannulas now (no mechanical ventilation). He is continuing to breathe. The hospital has now given him oxygen and hydration, I think.

The parents wanted to take Alfie to another hospital for treatment. The courts in the UK have denied the parents this, because in the UK, the parents aren't the final arbiter of the child's best interest--the doctors are.  

Guys, this is terrifying. I love doctors. But doctors can be wrong. Three doctors, at least, were wrong with me--and almost killed me, three times. 

Doctors have also saved my life--three times--because they didn't listen to the first doctors!

The doctors decided that Alfie will never get better. That he is suffering. So it's better to end his suffering....by killing him. Because they don't think he can get better. So...it's better than he's dead. 

That's the same thinking that undergirds wrongful birth suits. And we know how I feel about that.  That a life with suffering is not worth living

I wish I didn't have to write about this stuff. But I do. And it makes me sad that I do. 

Guys, please, don't think that these things are all the same. They're not. End of life issues are complicated, but please educate yourselves.

 

 

Circle of Life

life issuesEmily DeArdoComment
We are not some casual and meaningless product of evolution. Each of us is the result of a thought of God. Each of us is willed, each of us is loved, each of us is necessary.
— Benedict XVI

Friday the annual March for Life was held in Washington, D.C. 

It was also Holocaust Remembrance Day. 

And the day that President Trump signed an executive order lowering the number of refugees that can enter the United States, as well as denying entry to certain refugees for 90 days, and a host of other things pertaining to refugees around the world. 

What do these things have in common? 

They're all about life issues. 

We in the pro-life movement are often accused of only caring about people "before they're born", and that if we really cared about people, we'd make contraception more widely available, so we wouldn't "need" abortions. We'd also support social programs that help people instead of cutting them. 

There's a lot to untangle there. And I wasn't even going to write about this, because people know how I feel (I don't really sugarcoat it). But I feel like there needs to be some sort of response to all this, even if it's my inadequate one. So here we go. 

First, there is no barrier to getting birth control. I really don't know why people think this. Condoms are available at any corner drug store or grocery. There was a basket of them in the entryway of my campus health center in college, free for the taking. Birth control pills can be prescribed by any OB-GYN in the nation. Yes, you have to pay for them. Shock. I'm of the opinion that things like birth control and Viagra should not be free, especially when people have to pay thousands of dollars for drugs that keep them alive. If you want to have sex, and you don't want to get pregnant, take the proper precautions. Be responsible. If you do get pregnant, abortion is not "health care." It is not birth control. It is killing a human being. Full stop. So, in order to avoid pregnancy, either don't have sex, or be responsible. And don't tell me that you can't afford a condom. And if the guy won't wear it, then, as a self-respecting woman, you need to dump him fast, because he is not a responsible dude who cares about you and the potential consequences of actions. Don't be dumb, ladies. Please. *

We care about unborn children because they need someone to care about them. They have no voice. They can't make cool YouTube videos or get covered by CNN as they hold a rally. They only have us. And if the most fundamental right--the right to exist--is denied, then how can we say we're for peace anywhere else? Is the logical failure apparent yet? It should be. We have to start at the bottom, at the bedrock. All life is worthy of being protected. 

Supporting social programs does not mean that you support government programs. Most of the pro-life people I know (If not all of them) also support pro-life charities that help pregnant women. They're just not government-run programs. They're private charities/organizations. Some examples are: 

Sisters of Life

Mary's Shelter VA

Pregnancy Decisions Health Centers

These are just a very, very few places. But there are so many more, that exist all over the country, and are spreading. Don't say that the pro-life movement doesn't care about these children and these women. Because we do. Small government conservatives generally don't want government doing a bunch of things. We want communities to do them--and they are. 

Now, does that mean that there shouldn't be a basic floor that people don't fall beneath? Sure. But that's sort of outside the scope of this discussion, and good-hearted and good-intentioned people can disagree on how best that should occur. 

Now, if we are to be pro-life in the best sense that does mean respecting all life--realizing that all life has value. That does mean that the death penalty has extremely limited applications (as the Catechism of the Catholic Church says, here). That means we don't kill people who are old, or terminally ill. It does mean that we should help refugees. The vetting process is intense.  Now, does that mean that nations should let in whoever wants to come to their country? Well, probably not. States are sovereign and they are allowed to make decisions that they feel are necessary to protect their people (and immigration laws exist for a reason. But we're talking about refugees, here, not "regular" immigration.) But the Church says in the catechism that: 

2237 Political authorities are obliged to respect the fundamental rights of the human person. They will dispense justice humanely by respecting the rights of everyone, especially of families and the disadvantaged.
The political rights attached to citizenship can and should be granted according to the requirements of the common good. They cannot be suspended by public authorities without legitimate and proportionate reasons. Political rights are meant to be exercised for the common good of the nation and the human community.

Refugees are certainly among the disadvantaged. We shouldn't act out of fear, but out of logic, out of consideration for all sides. And this extends to administrations on both the left and the right. 

And Holocaust Remembrance Day? 

Jews tried to flee Europe in order to escape Hitler and the rise of Nazism. And the U.S. did not respond well. The book Alex's Wake tells the story of Jewish refugees who were coming to Havana, but were denied entry there and in the United States and Canada, and forced back to Europe and the Holocaust. 

Anne Frank's father tried to arrange immigration to the U.S., but was denied. And we know how that story ended.

We look back on these stories and ask, how could the government have made those decisions? Probably because of fear. How could the U.S. government incarcerate thousands of Japanese-Americans

I think we have to learn from history. And we have to support life. I can't imagine being one of the people in the airport, thinking they're going to be a place of safety, and being told that they can't leave--that they're doomed to stay in a war zone. Think about that for a second. 

We have to protect life in all its stages. We cannot allow people to become "other" because we are all children of God. No one is other

We cannot look away. We can't turn aside. 

We might disagree on policy decisions--how best to educate children, how best to provide health care to people, what the tax rate should be. But we cannot disagree on the fact that all of us are human beings, and all of us are God's. We are responsible for each other at a basic level. 

Babies. Jews. Refugees. 

People

 

 

 

 

 

 

________

* That being said, I'm Catholic, and I don't believe sex outside of marriage is moral, nor is the use of artificial birth control inside of marriage. I know not everyone feels that way. :) I'm talking from a policy perspective here, not a religious one. 

 

 

Seven Quick Takes No. 113

7 Quick Takes, Jeopardy, life issuesEmily DeArdo2 Comments

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....)

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

 Plant at Dawes Arboretum. 

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

7 Quick Takes, life issues, Jane AustenEmily DeArdo2 Comments

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)

life issues, transplantEmily DeArdo27 Comments

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. 

 

Deciding who lives and who dies

Catholicism, life issuesEmily DeArdoComment

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. 

 

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* 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.[