Emily M. DeArdo

writer

CF

Doing The Best You Can With What You Have

CF, health, transplantEmily DeArdo1 Comment
Under the Wave off Kanagawa (Kanagawa oki nami ura), also known as the Great Wave, from the series “Thirty-six Views of Mount Fuji (Fugaku sanjurokkei)”

Under the Wave off Kanagawa (Kanagawa oki nami ura), also known as the Great Wave, from the series “Thirty-six Views of Mount Fuji (Fugaku sanjurokkei)”

I was talking to a friend of mine the other day, who, like me, has had some health problems. And we were talking about how the things you do to save your life can later come back and have unplanned consequences.

“I’m dealing with that right now,” I said. We talked a bit more about how frustrating this is—but then we asked, Would we have changed anything?

And the answer is, probably not.

So I thought I’d write about this.

*

After my clinic visits, we always have to wait for blood test results. One of them that we’ve been watching lately is called the A1c, which I talked about in the last post. Basically, it’s a batting average for your blood sugar. And ever since I entered menopause it’s been going up….and up….and up.

This is not good. The more sugar is in your blood, the more that can lead to lots of problems. Problems that I don’t want.

This isn’t CF related diabetes, because my pancreas still works. (I don’t take enzymes to digest my food, so that’s how we know….) But at the same time, my body is clearly becoming insulin resistant.

I’ve been on steroids for 14 years. So the thought is that steroids + menopause=unhappy A1c.

Now, I can’t go off steroids. I’m on a low dose—5 mg a day. There is a 2.5 mg dose. And I might try that. But the problem is, my body has adjusted to them, and my joints, especially like prednisone. A lot. I had CF related arthritis before my transplant and that is helped a lot by the prednisone. I notice when I miss a dose. So when I tried to go off prednisone a few years ago, my body said, “nope.”

Why am I on prednisone? Because I had a transplant.

Which saved my life.

But we know that prednisone has a lot of side effects.

*

Another area where side effects come to play? Cancers. We’ve talked about that a lot here.

And, not pred related, but med related—my hearing loss.

So, these are all things that have happened as a result of staying alive.

But—what were my choices?

Well, to take the meds, or die. Really. It was that stark, in a lot of cases.

So I decided to take the meds. And live with the side effects.

And that can be sort of sucky, to be honest. Because you do things to save your life, but then…there are consequences, and you have to be ready to deal with those. It’s a long-term gamble.

But, and I said this to my friend, we do the best we can with the information we have. We can’t think about 5, 10, 15 years down the road when we’re looking down the barrel of the gun right now.

If you’re in that situation, I know how you feel. I know it’s hard not to google and think about the future. But really, in my opinion, the best thing to do is to talk to your doctors, see what the options are, and then go with what is best—for you, for the situation, for what needs to happen to achieve a good outcome.

Does that mean you’ll be thrilled with what you have to do? Well, no. I’m not thrilled that I’m injecting myself with five units of insulin every night. But it could be worse.

This is what I have to do to stay alive—to see year 15, year 16, year 17….post-transplant.

Now, are there things I won’t do? Yeah. I’ve always said I wouldn’t go for a third transplant. That, to me, is a bridge too far.

But right now, I take the insulin, I adjust my diet, and I do the best I can with what I have.

Day In the Life: Yearly Transplant Testing

CF, health, transplantEmily DeArdo1 Comment
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I thought that I’d give you a little glimpse into a day at clinic, but in order to get the most bang for your reading buck, I chose do chronicle a day where I do yearly testing—as in, clinic, blood draws, X-rays, CT scan, and a DEXA (bone density) screening. So come along with me on Monday’s trip….

6:30 am: Alarm goes off.

7:20 am: Out the door, to the hospital!

It’s not raining! Yay!

It’s not raining! Yay!


The hospital is only 12 miles away form my place, so that makes it easy to get there, but morning rush hour can be a beast. Fortunately, it’s not bad, and I get to the parking garage at 7:45, after being asked for the nth time if I’m a visitor. No, I am a patient. Deep sigh.

Excellent parking!

Excellent parking!

The hospital has a nature theme, so there are lots of animals and other nature-ish things around. In case you can’t tell, those big green things are acorns.

7:50: Heading to Crossroads Registration

dooooown the long hallways.

dooooown the long hallways.

I passed this bunny on the way in:

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Registration is in the middle of the hospital complex and sometimes it can be a pain. But there was a nice lady behind the desk, the kiosks worked, I had my wrist band, and was on my way to infusion for my first appointment….




Up we go!

Up we go!

The tower building used to be the main hospital—I’ve spent a lot of time here. :) The fourth floor (4AE) where infusion is is where the adult CF floor used to be. It’s where I almost died and it’s where I waited the night my transplant came.

The 4th floor is also home—or was—to the PICU. So yeah, the fourth floor has lots of great memories. (Seriously, some are good. Most are….not.)

It does, however, have a good vending machine.

Anyway!

8:00 Infusion

In the waiting room—Muppet Babies on TV.

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Great view, huh?

Great view, huh?

Since I was early, I got taken back early—yay!—into one of the rooms. Like I said, these used to be patient rooms. Now they’re smaller. Most of infusion is separated by walls and curtained off areas, but since I’m a transplant patient I go into an actual room.

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Sometimes infusions last for hours. Really, the reason I go to infusion isn’t to get meds, it’s to get my port accessed for blood draws. So the room has a bed, and the other areas have recliners, if you’re staying. I’m not. This is an in and out thing.

My great nurse comes in and sets things up….


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Fortunately no vitamin levels today, so only three tubes. We could not get that out of my veins. So—port!

The blurry part is the strips that have my ID number on them and get attached to various things when the blood goes to the lab.

And yes, everyone must wear PPE—personal protective equipment—when they access the port. Gowns, gloves, masks, and hair nets. It’s like we’re doing surgery here.

So, we’re running ahead of the game, but then my port decides to be dumb, so we have to wrestle with it for ten minutes, but finally it cooperates and we get the blood. Then we flush the line with saline and heparin, and de-access me. Yay!

I am free to go back down to the main floor!

Hallway out to the waiting room.

Hallway out to the waiting room.


Doooown we go.

Doooown we go.

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This used to be part of the old ER—the parking lot to the right is where we dropped me off the night of my transplant.

(Bunnies ahead!)

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This used to be “main” radiology, and the little hallway you see above used to run between radiology and the ER. This also used to be the main hospital through way—if you went to the end of this hallway you’d reach the main lobby. But I digress!

I’ve been coming to this part of the hospital for twenty-six years. It’s very familiar.

As is this hallway, but now they’re changing it! I don’t know what to do ! :-p




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8:40 AM: Chest X-ray

So I have my probably five millionth chest x-ray (that’s a conservative estimate), before which I ran into my post-transplant buddy Amber, who is also going to clinic. It’s always fun to see friends!

So, out of radiology, heading toward clinic, and passing the fish tank and the satellite gift shop.

(Yes. There are two gift shops)

Sharkbait!

Sharkbait!

Past the coffee bar….


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To the elevators, and up to good old fifth floor CF clinic! :) Also been coming through this door for 35 years. :)

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9:00 AM: Clinic

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This is where I spent the bulk of my time. On a “yearly” clinic day, everyone comes in: the doctors, the dietician, the social workers—and things get a little more in-depth. (Not so much on the doctor end, since I see him every three months.)

*The dietician asks me to talk about what I normally eat: meals and snacks. She’ll then give suggestions. Right now, we’re dealing with weight loss and the silly A1c levels (more on that in a bit), so we want to make sure I’m eating the right combination of things. She made some suggestions, I asked some questions, and it took about a half hour, probably. I really like the dietician so that helps. :)

*My Doctor. I see one of the two docs on the team every three months. This time, he was happy with how I was doing, and we talked about the A1c thing.

Basically, the A1c is a test that looks at how your blood processes sugar all the time—it’s like a batting average. It’s how much sugar “sticks” to your red blood cells. For normal people, you want it to be under 6% For post transplant people, you want it to be in the low 6%, because the prednisone we’re one messes with how our bodies process sugar. So we aren’t aiming for normal people normal, but abnormal normal. :)

I had been testing my blood glucose levels (BGLs) for a few months, and my doctor didn’t think my numbers were really all that bad. (Again, we’re looking at abnormal normal here. Not normal people. ) He did say that if my A1c was up, then we’d probably have to start me on a low-dose, long-acting form of insulin. It wasn’t really because I hadn’t done what they asked—I lost weight, I’m being more active, and I’m checking my BGLs—but because I’ve been on prednisone for 14 years, and I’m in menopause, which, as we know, messes with hormones like nuts.

But my Chest X-ray looked good, and my PFTs were up a point, so lung wise, things are great. Sinus wise, things are great. I’m seeing all my specialists like I’m supposed to and I keep clinic informed of things there.

My doctor wanted me to do some other PFTs so I had to go back to the lab, but we’ll get there in a second. :)

*Social Work: Normally, they just come in and ask how I’m doing and give me a parking token. Since I’m working with some insurance insanity right now, we had more to talk about and they are going to look into some things for me which is massively helpful. So I was happy!

Finally, Pulmonary Function Tests, aka, PFTs.

Normally, when I say I’m doing PFTs, what I mean is I’m doing spirometry. Aka, the thing where you sit down, put clamps on your nose, and breathe in through a tube connected to a computer. You breathe easily for a few breaths (for me it’s two) and then on the third you take in a huge breath, like you’re about to go underwater, then blow it out fast and hard.

You then get results that look like this:

swirly bit is blocked out personal info. :)

swirly bit is blocked out personal info. :)

Now, this is in liters, and I generally look at percentages. As of yesterday I had about 54% lung function, which is good for me, and that’s the “moderate restrictive defect” part. It’s not anything to worry about, it just says that at the bottom.

I also did two other kinds of tests which check how gases are diffused in my blood and other breathing related things. Those were also fine. So yay there.

11:00 Finished clinic, back to radiology!

I finished in clinic, said goodbye, and my nurse said she’d email me with follow-up things. I then headed back down the elevators,

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past the fish….



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And back to radiology.

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This was a bone density scan that did scans of everything—we did hip focus and lumbar focus, and then the whole body. This is important because prednisone (don’t we love it?!) also causes issues with bone density and causes osteoporosis. Fortunately my bones are AWESOME. I hope they continue to be awesome—I haven’t gotten these results back yet.

FINALLY, the LAST TEST!

11:45 am: Chest CT

so heading back through the center of the hospital, to the Magic Forest!

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And into the CT room:


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This is just a regular old CT scan of my lungs to make sure we’re not missing any small things that might be happening that regular X-rays don’t pick up. Easy peasy.


So I was free, and said goodbye to the bunny, at around 12:15!

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I was really hungry at this point, because I’d only had a little breakfast—you’re not supposed to eat a lot before clinic visits in case something scary shows up in testing and you have to have a bronchoscopy that day. (Yes, that has happened to me before.)

So I was hungry and had walked about a mile and a half, not kidding, in the halls of the hospital. I hit my move goal for the day at 3 PM, so I knew that I’d get a decent workout on this day, lol.

This used to be a longer day—there used to be more tests. So I’m fortunate that this was a pretty quick day and everything went well, except for the silly port being stupid! :)

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

CF, essays, transplantEmily DeArdo2 Comments
My siblings and I on my brother’s wedding day.

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.

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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.)








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

Med-sanity II

health, CFEmily DeArdoComment
My coffee machine died yesterday. It was speedily replaced, so let’s think about the wonders of coffee and lovely rainbow colored tea tins from David’s! :)

My coffee machine died yesterday. It was speedily replaced, so let’s think about the wonders of coffee and lovely rainbow colored tea tins from David’s! :)

I was supposed to have a procedure done on a skin cancer on my ear today, but that’s not happening. Because….sigh.

A little background. While CF is becoming less of a “childhood” disease and more of an “adult” diseases, adult hospitals have not caught up. I’ve been in several, and what I’ve noticed at 98% of them is that the doctors and staff cannot look at someone “young-ish” and see chronic disease. They think that anyone under 50 must have been perfectly healthy her entire life and thus, can just do whatever they want.

WRONG.

A few examples:

  • You can’t do an MRI on me. Magnet in my head.

  • You can try to put in a PICC line, but it won’t work. My veins are all scarred over from the years of previous PICC lines.

  • You can’t use adult sized needles on me; my veins can’t take them. You need baby sized needles, small child sized needles. I have small child sized veins. And you also have to be good—you can’t just look in the crook of my arm or my hand like you could with a regular adult. I’ve had IVs in my shoulder. I’ve had them in my thumb.

And, what’s pertinent to today’s discussion: I am on many* meds for a variety of conditions. You can’t just prescribe a drug for me without looking at side effects and being aware that they might happen.

This is relevant because, as I wrote in the previous post, when you already have mental health issues, you tend to not like drugs that can make those worse.

So, when I (my mom) called the doctor about the side effects I was having—supreme irritability, mood swings, etc.—the nurse said, well, stop the med and I’ll talk to the doctor.

OK. Done.

We (mom and I) get a call a few hours later when we’re at dinner. The nurse says that 1) the doctor doesn’t think the med is causing the issues, but stop anyway 2) they cancelled my appointment for today and 3) they want me to go to my “PCP” (primary care physician) to have my “mental stability” assessed.

That last point is sort of an insult, frankly.

I’ve been seeing a psychologist since I was 16. I’ve been on a medication for anxiety for that long. My doctors KNOWS this. It’s in my freaking chart, that I take this med. I am not unstable, but yeah, the med you put me on? Made me a littleeeeeee irritable and sort of unhinged. Yeah. But that doesn’t mean I’m going to flip over procedure trays and get into WWE fights in the waiting room. Stop the med and I’ll be fine.

It’s like when I do a steroid bolus. It makes me SUPREMELY cranky and irritable. But I know it’s the meds and the courses are usually short. In this case, the med isn’t even necessary, there are other ways to treat this guy. I’ve had lots and lots and lots of terrible medications in my life that have given awful side effects, but they’re necessary so I suck it up and deal with it. This isn’t necessary.

Second, I don’t have a GP/PCP. I TERRIFY GPs, because I’m complicated. The ones I’ve met are usually afraid to do anything to me because they don’t want to mess things up. So my “GP” is my transplant pulmonology team.

Third, read my freaking chart. Really. It comes back to this all the time with adult hospitals and physicians. “Do you have lung issues?” Seriously, I was asked that question. (Not by this doctor. Another wonderful adventure years ago.)

So a procedure today had to be rescheduled for next month, and I have no idea what we’re doing with the cancerous spot on my arm, except I’m not taking the med anymore to treat it.

Which brings us to the big lesson, here:

I have lived in my body for 36 years. I have a very, very well-tuned—exquisitely well-tuned, I’d say—sense of status within it. I know when “something is not right”, to quote Miss Clavel. And I don’t think I’m exaggerating when I say that that instinct, and my parents’ equally honed instinct, has saved my life on a few ocassions.

Doctors and medical people need to listen to me. I’m not always right. But when I say something is the med, it’s the med. When I say X is happening, and it’s because of Y, it probably is.

It’s basic science. When you do an experiment, and you add a variable, an things go haywire—it’s not because of everything that came before. It’s the variable you just added. That thing has pushed the balance over the edge. Remove that thing—balance restored.

*I am on vastly fewer meds now than before transplant. That being said, I’m still on what the average person would consider “a lot” of meds.


Sage's Shawl

CF, essays, yarn along, knitting, journalEmily DeArdo1 Comment
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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. 

Stop waiting around

CF, essays, transplantEmily DeArdoComment
Trivia night victors! 

Trivia night victors! 

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

Invisible Disabilities and the Workforce

CF, health, hearing loss, politics, essaysEmily DeArdoComment
Fun medical equipment from the 1980s....

Fun medical equipment from the 1980s....

Take a look at the picture of me on the sidebar. (If you're reading this in email, click through.) 

What do you see?

I'm not asking for an assessment of my physical attractiveness, or lack thereof. But if you just looked at that picture,  you would think, yes. She looks like a pretty typical 30ish woman.

This is what you'd be missing: 

*You can't see my cochlear implant, tucked behind my left ear. I don't wear any hearing devices in my right ear, and there's only about 20% natural hearing left there. 

*The scar on my forehead? You can see that, but you probably don't know it's from a skin cancer removal. You also can't see the bald patch on the back of my head, from another one. Skin cancer is 10x more common in post-transplant people, because of our immunosuppression. It's not because I'm fair. (And I'm religious about sun protection, anyway). 

*You can't see that I've got about 52% lung function--which for me is good. That's great! But for normal people, if it's lower than 70%, there's probably an issue. For me, 70% is a dream I will never see again, after hitting it in 1997. So imagine working without one lung. That's me all the time--and that's GREAT. I LOVE IT! 

*You can't see the burn on my right arm, which is left over from transplant surgery. Third degree burn. Skin graft. It's rendered my right arm usable--thank God I still have it!--but it doesn't have complete function like it used to. (Knitting probably helps, though, in making it stronger.) The skin is very, very delicate. It tears easily. So I can't do a lot of manual labor with this arm--and this is my dominant arm. If you were looking at me, you'd notice, but you wouldn't have all that information. 

*Oh, and I'm anemic. I always have been. Part of the paleness. :) But that affects my stamina, too. I'm used to it, now, but there are times when I need red meat and sleep--Moreso than the average bear.

 

I'm telling you all this because invisible disabilities have been in the news lately, as a part of the new Medicaid standards the administration is considering. I look pretty "able bodied", but I'm not--as any physical exam would show. I can't use a telephone--I use FaceTime, but not a real phone. If you call me, I can't understand you. You will sound like Charlie Brown's teacher. Being immunocompromised means if I get sick, there could be a hospital stay in my future. You get the flu, you stay home. I get the flu, I can end up in the hospital. I need to be more circumspect about where I go, especially during flu season. And honestly, I need to take care of my body. That means giving it enough sleep, among other things.  

So, looking at me, you can't see these issues. But they're there. And when you compare me to an average 35 year old woman, it becomes apparent. Invisible disabilities are real. Ask anyone who has arthritis, for example. Or diabetes. Or epilepsy (which I had as a kid). They're not to be taken lightly. Just because someone looks able-bodied, doesn't mean she is able-bodied. 

As a society, we need to be cognizant of that. I'm not making policy suggestions, here, but we need to be aware that there are serious disabilities that people cannot see, and that can impact ability to work. For example, I look fine. But you don't want me to be your receptionist, or ask me to carry heavy things or fix machinery on a regular (or even semi-regular) basis. And of course, I see many more doctors than average people. I see my transplant doctor every four months--I see my ENT every four months. I see my dermatologist very frequently, and I have days where I'm out having Mohs surgery, or having things removed--that takes time. I can have surgeries scheduled at the drop of a hat. Any employers who hires me needs to be aware of those things, and needs to be flexible about them. If they're not, then I'm in trouble. And my employer won't be happy, no matter how great my work is, or how intelligent I am. Without that understanding and flexibility, a job will be hard for both of us. 

I want to provide this as food for thought, when you read about invisible disabilities, or work requirements. It's not wanting to work--it's things that make working difficult, for both employer and employee. 

*

Having said that, though, I don't think a person with a disability or a chronic illness should automatically go the SSDI/Medicaid route. Here's why. 

I think that being "normal", as much as you can, is good for self-image, self-esteem, and general mental health. I know that one of my biggest drivers growing up was that I was not going to be babied. I was going to be normal. That meant, doing my homework. Going to school. Taking exams. Etc. If I needed accommodation, I asked for it, but it was low-key. I finished high school. I went to college. And after college, I got a job. 

I knew that I would need a job with good insurance. So yes, if you have medical issues, that means you have to consider jobs with good benefits. It doesn't mean you can go off and join a non-profit that doesn't provide good medical coverage, OK? You have to be reasonable and logical. I wrote more about this here

I do not think it is a good idea for people with CF to sit around at home and bewail their state. First off, that would have driven me insane. Really. When I had to be home for four months post-transplant, after about month three, I was going stir-crazy. I have to have things to do. 

But--there comes a time, when yes, you can't work anymore. This happened with my friend Sage. When she was listed for transplant, she had to leave her job and apply for SSDI. That does happen. It's part of life. But I don't think--and we talked about this often, so I know we agreed here--that she wouldn't wanted to sit at home, either. 

Maybe you do. OK. But my feeling is, if you can contribute, contribute. BUT that requires having an employer that is flexible and that is willing to work with you. And I had that--until I didn't. Once that goes away, then life can get very difficult, and then it might be time for SSDI/Medicaid/whatever. If that time comes, then go for it. That's when people on the government side need to realize that we might look pretty able-bodied. But we're not. 

And also, when it comes to the Medicaid/SSDI system, a lot of the time, they're not talking disability like I have a disability. They're talking about worker's comp sort of stuff. Like, back problems. Problems with limbs, or standing for eight hours, and movement. The system isn't really designed for people who have chronic issues that aren't movement/skeletally based.  That is frustrating, because what I have is what I have. I'm never going to get my hearing back. My lung function may go a little higher, but this is pretty much as good as it gets. I'm never going to get better skin on my skin graft. So the government side of this needs to realize that some disabilities don't get better. They might stay stable--or they might radically get worse--but "better" is not going to happen.  

I know that before I had to deal with all this, I had no idea that any of this was true. So I think it's worth it to share these thoughts with people, so you can realize that when government talks about "disability", there are levels, and there are degrees. 

 

The Fiction of a Painless Life

CFEmily DeArdo7 Comments
Me with my best friend, Anne (on the right), after our First Communion Mass in April 1990. I had just turned eight years old. I wouldn't be diagnosed with CF until three years later. 

Me with my best friend, Anne (on the right), after our First Communion Mass in April 1990. I had just turned eight years old. I wouldn't be diagnosed with CF until three years later. 

I have almost died five times. 

This is what it feels like. 

It is very easy, for starters. All you'd have to do is...nothing. Just sleep more, let the energy and life flow away. It's silent, it's simple. It really is like falling asleep. It's so easy.

It's much harder to be alive, because in life, you have to fight for it. 

I have almost died five times. 

I almost lost my right arm. 

I've lost most of my hearing. 

I have almost no vein access, anywhere but via the port-a-cath that's surgically implanted in my chest. 

I've learned to give myself insulin injections. 

My parents and siblings know how to re-constitute IV meds. 

I've had an IV line bleed out the night before my Algebra II final. 

I've had skin cancer, epilepsy, cystic fibrosis, thalessimia minor, and a double lung transplant. I've had tuberculosis and an infection that only one other person in the world had had. 

I've been to the ER so many times that it's like Cheers

I've had pancreatitis eight times. If you haven't had it, be glad you haven't had it. 

I've had four chest tubes. 

I've taken pills every day of my life since I was two years old. 

I could probably give myself chest X-rays by now. 

I'm surprised I don't glow in the dark, due to all the radiation exposure I've had. 

I've been twenty years old and planned my own funeral. 

I've spent most holidays in the hospital except Christmas and my birthday. 

I use the word "contraindicated" like most people use the word "like". 

Every month, my mom pokes me with a needle and I don't hit her for it. :) 

I have coughed up blood. 

I have had 17% lung function. 

I have been in a medically-induced coma for two weeks. 

I've had people tell me that my CF treatments, which kept me alive, annoyed them. I've had people say injecting insulin is gross--to my face. I've had people ask rude questions, time and time again. I had a classmate tell me that there wasn't any point in me studying, because I was going to die. 

But you know what? 

I am still alive. 

And I love my life, even with all its imperfection, even when it would've been easier to just let go and sail off into the West like Frodo. 

But this life is exquisite, no matter what. 

This world isn't my home. I know that. But it's so beautiful. 

Because you know what's beautiful? 

That I'm freaking typing this. 

That I am breathing

That I'm going to see my brother get married. That I've seen my godson grow up--because there was a time when I thought I wouldn't. 

Standing in the Pacific Ocean. 

Learning to knit. 

Watching little kids smear Oreo crumbs on their faces. 

Editing. 

Writing. 

Snuggling in bed. 

Reading books. 

Tickling babies. 

Reading Robin Hood to enraptured small children and doing all the voices. 

Christmas shopping. 

Watching hockey games, and yelling at my team when they suck. 

Learning to draw. 

Eating a Duck Donut. 

Eating anything, at all. 

The couch I'm sitting on. 

Godless on Netflix.

The Outlander series. 

The Wizard of Oz.

Elizabeth Bennet. 

Pretty dresses. 

My sister's cat. 

My siblings.

Fish and chips. 

 

All of those things--all of those beautiful things--do not exist without the list of ugly things. 

There is no life without suffering. There is no life without pain. 

And yet, people try to limit it by killing people like me. By eliminating people with CF, or Down Syndrome, or by saying that assisted suicide, euthanasia, and abortion is the compassionate choice. That it's better to be dead than alive with a hard life. That it's better to not exist than to exist with pain. 

I will never believe that. And I will never stop fighting for my right to exist, for my right to be here and to live the life that God has given me to live. And I will fight for all the other people like me, who are told that we shouldn't be here, that our lives are worthless because they are painful, because they make other people's lives hard, because we suffer

Suffering has made me better. It has made me stronger. Without it, I would've been a pale imitation of myself. 

My parents didn't kill me, obviously. My parents never went to court and said that my birth was "wrongful". They never made me feel like I was a drain on them, even though at times I've felt that way. They've always told me that I am worth it. 

We are all worth it. 

If you think that living with pain means life isn't worth living, then what are you doing here? 

"Life is pain, princess," said Dread Pirate Roberts. He was right. 

But there is also so much beauty in it. 

The very chance to exist--to be brought into existence--the chance to have this life? This is everything. 

And if you don't understand that, I pity you. 

 

I am not brave

essays, health, transplant, CFEmily DeArdo2 Comments
IMG_5854.JPG

Let's just get this out of the way. 

I am not brave. 

I am not courageous. 

I am definitely not a saint. 

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

This makes me really uncomfortable. 

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

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

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

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

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

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

IMG_5847.JPG

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

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

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

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

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

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

 

Thoughts on Health Care/ACA/Etc Part One: Some background

healthEmily DeArdo1 Comment

I realize that's not the sexiest title, but I thought that it might be worth sharing some of my thoughts on health care, as someone who both uses the health care system extensively, and someone who worked in government. And since, if I tried to make this one post, the post would be approximately the length of Moby-Dick (and about as fun to read), it's going to be several posts. 

Today: My background in health care and using the American Health Care System 

Tomorrow: Working in Government and Seeing How Things Work (ie, nothing is free!) 

Day Three: Suggestions

I wasn't diagnosed with CF at birth. I was diagnosed when I was 11. However, I had epilepsy before that, and my first hospital admit was at the age of 9 months, so I've been using the health care system intimately for a long time. I always had insurance under my dad's work plan. Sometimes the plan would change and we'd have to deal with companies that weren't quite as good as others (Cigna, I'm looking at you), but I always had insurance. And it was insurance that worked, meaning it paid for the big things, like a two-week ICU stint my sophomore year of college, and lots of not-so-big things, like IV antibiotics at home. 

 I always knew that I had to have a job that would provide good health insurance. Salary wasn't as much of a priority as that was. Working for the government was ideal, because, while the pay was less, the benefits were good. I had three choices of health insurance plans. I chose the most expensive because I knew that my doctors at Children's liked them (meaning, they didn't have to argue with them too much), and they were what I'd had with my parents, so we were familiar with their coverage and co-pays and all that jazz. We knew how they worked. Like I said, this was the most expensive plan and took the most out of my paycheck, but that was secondary to having insurance that was good and would cover things, like the transplant I knew I was going to have soon.  

At that point--2004--I knew I had to have a job, because I couldn't stay on my parents' plan. Back then, you could only stay on your parents' plan through college. The details are sort of fuzzy now, but I think there was a way I could've stayed on their plan, or something, because of all my issues. 

The other option for health care coverage, if I didn't get a job or didn't want to get a job, was Social Security Disability Insurance (SSDI), but I never even considered that, because 1) I wanted to work, 2) I didn't consider myself disabled. Yeah, OK, so my lungs were crap and I spent a lot of time in hospitals. But I could work. I had a brain that worked, I was intelligent, and I was going to use my fancy degree, dang it! I never considered not working, or not going to college.  

So, I had a job, I had health insurance. My  plan paid for my transplant--the surgery, the hospitalization after, the rehab, the drugs. It was good. It did what it was supposed to do, in short. I went back to work and continued to have health coverage. And I still, today, have health coverage (although not as good). 

Obviously, I am a person who requires lots of health care stuff. I require multiple medications to survive (although not as many as I did pre-transplant. Yay!). I wear contacts. I have a cochlear implant. I see a pulmonologist, a cardiologist, an ENT, a dermatologist (because my skin cancer risk is about 10X as high as the general population), a dentist, and an optometrist. In other times during my life, I've seen a rheumatologist, a neurologist, a plastic surgeon, doctors who treat burns, a dental surgeon, orthopedists (two broken bones), and a general surgeon (for when my port was implanted). It's easier to list the departments I haven't been seen in at Children's than the ones I've seen.  I am expensive to keep alive. 

And even with insurance, my family and I have to pay for things. A cochlear implant upgrade? $10,000. Visits to the infusion lab at Children's for blood draws? A few hundred. Pulmonary Function Tests, chest X-rays, CT scans, and EKGs? Yet more money. 

Now, that's the insurance side of it. How about the waiting side of it? Do I ever have to wait for care?

No. 

That's the quick answer. The longer answer is, sort of. My ENT, for example, works at various hospitals. When I need sinus surgery, we do it at Children's because they are so familiar with me, and that's where my lung transplant team is. So if I need surgery, I might have to "wait" if he doesn't have an immediate open slot on a Children's Surgery Day.  Even then, though, it's maybe a month or two month wait, and that's because my sinus surgeries are generally not urgent deals. They need done , but it's not like I'll die if they're not done quickly. 

I have never had to wait for any sort of testing or treatment. That's excellent. And it's almost always been like that, with any insurance I've had throughout my life. 

I obviously have a stake in how health care is "done" in this country. However, that doesn't mean that I fell to my knees in gratitude when the ACA was passed. But that's for tomorrow, when we talk about what I learned when it comes to government and health care. 

 

 

 

You Get What You Get

health, essays, familyEmily DeArdo2 Comments

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

health, transplant, essaysEmily DeArdo1 Comment
Not a good idea when you're sick 

Not a good idea when you're sick 

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

For Sage

essaysEmily DeArdo1 Comment

I lost a friend yesterday. 

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

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

She would've liked this--purple confetti. 

She would've liked this--purple confetti. 

(And GOSH I hate using the past tense.)  

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

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

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

And then, a few hours later, she died. 

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

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

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

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

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

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

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

 

 

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.