Showing posts with label cystic fibrosis. Show all posts
Showing posts with label cystic fibrosis. Show all posts

Sunday, August 20, 2017

on turning twenty-nine for the first, and only, time


Today was my twenty-ninth birthday—for real. We celebrated well at my parents' house, with gorditas, five-layer Chinese bakery rainbow cake, and an impressive Mormon minibar (aka build-your-own Italian sodas). 

My dad teared up talking about how 28.5 years ago, when I was in the process of being diagnosed with cystic fibrosis, they found an outdated book in the library that said I wouldn't live past nine. Later, when the doctor gave them an official prognosis, it wasn't much better—nineteen. 

It's amazing to be a full decade past that, on the cusp of thirty. 

I found myself thinking tonight about my dear friend Kristi, whom I still miss daily, who died unexpectedly nearly a year and a half ago. She was a few years older than I am—already on the other side of thirty—but she, like so many of my friends, will not live to have another birthday.

Our culture has been subsumed by the cult of agelessness; adult birthdays are less joyful celebration and more occasions of dread, and millions of women walk around coyly saying they're turning "twenty nine—again." Every time I hear something like this I find myself wanting to grab the speaker by the shoulders and shake them. Don't you know how lucky you are? Don't you know never to take a single birthday for granted?

So here I am: heading into my thirtieth year of life, determined to live in gratitude, without taking these years for granted. I cannot wait to close out my twenties, to head into a new decade, to swim forward toward numbers I never thought I'd reach. 

And ten or twenty years from now, if I should be so lucky to still breathe, when my silver hairs have taken over, when you ask me how old I am, I will not be answering 'twenty-nine.'

Thursday, March 23, 2017

this is what it feels like


This post has been bubbling around in my consciousness for months now. More than once, I've thought about writing it and then stopped myself. No, I've thought. I don't want to make people feel bad. I don't want to burn bridges. I don't want to deal with responses telling me that the way I'm feeling isn't valid. I don't have the oomph to listen to people tell me I'm wrong. I just don't have the energy.

But you know what? It's been months, and the grease-fire that is the healthcare debate in our country is just getting worse and worse. Today, the most hardline conservative members of the House of Representatives convinced the White House to strip even more protections out of an already-terrible healthcare reform bill, and they're after even more—including the piece of the law that bans insurance companies from charging more to people with chronic or genetic illnesses. Like, you know, me. And I am left with this burning desire to share these feelings, to speak plain words, to do whatever I can to give people a peek into what it feels like to be a chronically ill, disabled adult with close to half a million dollars a year in medical bills right now. And I'm posting it on my public-facing blog, because this is real. It is important. And I am done being silent about it.

I will not speak eloquently. My words will not be beautiful. They will probably be angry, and they will definitely be stark. And maybe they will make you mad. If that's the case, I'm sorry—except not that sorry, because maybe that anger will also give you understanding, offer a glimpse into the anger and fear and hurt and grief that I've been feeling these last months. Because there has been so much of all of that. So much that some days I feel like I can't function. So much that some days I sit on the couch trying to disengage from news headlines while I hide furtive tears from my daughter. So much that when I gather my nice words to post educational items about healthcare on Facebook, it feels like a Herculean effort, because all I want to do is cry and scream and rage against the world.

Because this is what it feels like, being me:

On November 8th, 2016, you start crying as election results come in and you do not stop for days. You cry in your sleep, which you didn't know was possible. You cry and you cry and you cry and you think, how could people that I know and love care for me so little as to vote in a man who has made it his life work to undo the laws that are the only reason I have healthcare right now?

In the months that follow, you have lots of days where you don't even want to go out in public, don't want to go to church, don't want to run into anybody you know, because if they ask you how you're doing you know that they don't want to hear that you're having an existential crisis over how calmly everybody is debating what your life is or isn't worth.

You have always loved your country. Independence Day is your favorite holiday. But lately, you find yourself hating living here with a passion, fantasizing about moving abroad—and not even because of the superior healthcare, but because you aren't sure you can take another day of living in a country in which people spend their days saying things like Why should I have to pay for somebody who's sick? and you know, even if they don't, that the subtext of that is Why should I care if sick people die?

You get angry sometimes, when friends gush about your adorable child. You want to take them by the shoulders and shake them and shout DON'T YOU UNDERSTAND? DON'T YOU UNDERSTAND THAT THIS CHILD, THIS BEAUTIFUL GIRL WHO DANCES IN SUNLIGHT, IS EXACTLY WHAT'S AT STAKE? Don't you understand that I am fighting so that she can grow up with a mother, fighting so that I can live long enough to hold her own babies someday, as slim as that possibility might be?

You have had setbacks in your access to insurance in the past, but never before have you genuinely thought, I could truly die because of this. But now that thought is in the back of your mind always, always, without ceasing. You tell your husband to freeze your retirement for awhile, not to buy a new car, not to do anything with your first payment from your debut novel. You spend your time thinking of contingency plan after contingency plan. You pray all day some days. And other days, you don't pray at all, because you know that sometimes God allows people to suffer and you can't even bear to think that maybe he could allow your sweet daughter to suffer without a mother.

You cry typing these words. You cry and cry and cry.

Rich men with nothing at stake debate your fate in Congress. Patronizing friends and family assure you that "it will all work out," that "they have a plan to take care of everyone," that "it won't be as bad as you think," that "you have to be positive." And you want to yell, I have ALWAYS been positive. I am an optimist. But these months have buried my optimism so deep I don't even know where it's hiding.

People complain that their healthcare is expensive, and you think: Yeah. Healthcare IS expensive. Because for you, it has never not been expensive; there has almost never been a time at which you weren't paying at least 10% of your income in medical expenses.

People say I can't afford to use the health insurance I pay for, and you think: Good for you. It's lucky that you have that choice. Because no matter how high your deductible has been in the past, you have always had to meet it, because it was between expense and death. Because, in the end, you'd rather be broke than dead.

And through it all—through all the conversations and the headlines and the long, long nights of fear, you are never allowed to forget just how little your country values bodies like yours, just how little most people genuinely care. Sure, they might care about you, objectively, because you're related or because you write funny Facebook posts or because you have interesting conversations. But as a whole, your fellow Americans care only for bodies that are whole and strong and healthy. People talk about "making wise choices" and "saving for healthcare when you need it" and "taking care of your health so you don't need interventions" and you want to rage, scream, throw things, shout about how sometimes you're not lucky enough to be born with genes that work, and sometimes you cost half a million dollars a year in medical care for conditions that are interwoven with your DNA.

You think about all the tiny aggressions you've dealt with in your life—the people who snapped at you for using a disabled placard, or the professors who tried to flunk you because you missed all those classes due to repeated hospitalizations, or all the many, many people who simply haven't understood the reality of your limited, liminal life. And you think about how you always assumed that these were the outliers, the fringe wackos who lacked compassion, the few and far between.

And about how you were clearly wrong. Because now, those who lack compassion are not at the fringe. They are everywhere. They are controlling your government. They are making passionless decisions about whether a body like yours has any value at all.

And you are not sure you have ever felt so alone.

.   .   .   .   .

(Note: I'm disabling comments on this post, and while I don't have the ability to do that when sharing on Facebook, I will summarily delete any comments that tell me that I'm overreacting, that I'm wrong, or anything at all about the ACA legislation. Because this is the very deepest, rawest part of me, laid bare, and I am heartily done debating whether or not a life like mine has value. Period.)

Friday, October 14, 2016

Interview: Shari Green, Author of ROOT BEER CANDY AND OTHER MIRACLES

Today I have the incredible privilege of sharing a chat with Shari Green, author of the debut middle grade novel-in-verse ROOT BEER CANDY AND OTHER MIRACLES. Thanks to an Amazon goof, I had the chance to read this a little bit early, and it was so good. Definitely one of my favorite reads of 2016! The verse is light and lovely, the setting is perfect, and the plot deals with major issues in a sensitive, gentle, and ultimately hopeful way. If you're a fan of Sharon Creech, you should definitely give ROOT BEER CANDY a try!

Here's Shari's summary of the book:

It will come to pass
that a stranger from the sea
will change
everything.

The locals in Felicity Bay shake their heads at the ice cream man’s prophecy. “Crazy old Jasper,” they say. But Bailey isn’t so sure. She’s found something special down at the beach: a driftwood mermaid, a gift washed up from a storm. Could she be the stranger from the sea who has come to change everything? Bailey hopes so. Because this summer, she could sure use a miracle.

Where did you get the inspiration for ROOT BEER CANDY AND OTHER MIRACLES?

I’d been thinking a lot about the extraordinary in the ordinary—Frederick Buechner said “all moments are key moments, and life itself is grace”, and that quote had been tumbling around in my thoughts. Meanwhile, I knew I wanted to write a “beachy book” someday—something in which I could really indulge my love of the sea. And then a driftwood mermaid showed up in my imagination, and the pieces started coming together.

I'm a big fan of verse novels in general, and especially for a middle grade audience—somehow they seem to work so well with the struggles of that age group. What made you decide to write ROOT BEER CANDY in verse? Is this your first verse novel?
Yes, it’s my first verse novel…but it didn’t start out in verse. At first, I struggled to find Bailey’s voice—after a few false starts I finally tried it in verse, and there was Bailey! As I wrote, I realized other reasons to keep going in verse: I felt complete freedom to use imagery to weave the setting throughout the story, and the format allowed me to use white space to give readers room to ponder ambiguities and unanswered (unanswerable?) questions. Above all, verse just felt right for me and for Bailey’s story.

One of the things that really drew me to ROOT BEER CANDY was the inclusion of a side character who has cystic fibrosis, like I do. CF isn't something that comes up a lot in fiction; what made you want to write a character with CF?
I’m not really sure why Daniel appeared in my imagination the way he did. I haven’t met many people with CF. And yet, there was Daniel with his chest physio and his eleven-year-old version of a seize the day attitude, and I loved him. It meant I had a lot of research to do, though! I knew I wanted him to have an important role in the story, because, like all kids, children with chronic illness need to see themselves in books. They need characters they can connect with, that maybe help them feel not so alone in what they’re dealing with. I hoped Daniel might be that character for a child somewhere, someday.

I also appreciated how authentically and sensitively you handled the issue of Daniel's life expectancy as a result of his CF, something that is definitely the elephant in the room for most of us. I love that it's not a focus of the story, and that Daniel is allowed to be a regular kid, but that it's clear that it's something Daniel thinks about. What made you want to include this, specifically, in Daniel's storyline?
I think one thing I love about a lot of children’s literature is that it doesn’t shy away from the tough stuff. So often kids are impacted by the hard truths of life, but adults whisper, censor, try to ignore those realities. This comes from a good heart, I think—from wanting to protect kids. But kids are smart and so very observant. They’re aware of the tough stuff, and they’re developing compassion for others and coping skills for themselves as they deal with it. Including the bit about Daniel’s life expectancy was a way of validating his experience, a way of saying your reality matters, your worries matter, the tough stuff you think about matters.

In your dayjob you work as a nurse (right?)—do you feel like that background helped you in writing authentically about CF and childhood illness?
Yes, I’m an LPN. My background probably helped somewhat by allowing me to be comfortable tackling the subject of chronic illness (and maybe especially the life-and-death aspect). However, most of my experience as a nurse has been on the surgical ward—not at all the place for childhood illness! Ultimately, I had to rely on research.

Since the beach is my #1 happy place (mine is the Outer Banks!), I love the setting for ROOT BEER CANDY. I know that you live near the coast and visit often. Is Felicity Bay based on a real beach town you love, or is it straight from your imagination?
Felicity Bay is completely fictional, but the island—Arbutus Island—was inspired by a real place: Gabriola Island, which is between Vancouver Island and the mainland of British Columbia. I spent childhood summer holidays there, and have wonderful memories and a serious case of nostalgia.

I love the thoughtful but not heavy-handed exploration of religion and faith in ROOT BEER CANDY; I think you hit a perfect note and have a story that really will appeal to children of all (or no) faith traditions. What made you decide to include faith as such an integral part of the storyline?
I wanted to include faith partly because it felt like the most honest way for me to tell this particular story, and partly because it isn’t often addressed in books. Kids think about this stuff, just as adults do, so let’s talk about it! To get more personal for a moment, I’ll add that including a spiritual element was also very true to who I am—and maybe who we all are. Don’t we all hope for miracles sometimes? Don’t we long for things that help us keep hoping, keep believing that we’ll be okay, that life will turn out all right? For me, ROOT BEER CANDY AND OTHER MIRACLES felt like the right place to explore these ideas.

Thank you so much for hosting me on your blog, Cindy. And thanks for the great questions! Wishing you and your readers an abundance of everyday miracles…

Check out ROOT BEER CANDY AND OTHER MIRACLES on Amazon here

Saturday, September 24, 2016

I love sharing your friendship. I don't want to share your germs.

How I dress for church in the fall/winter
months to try to stay cold-free

For many years, I've shared a post about the importance of staying home when you're sick as soon as the first autumn colds start to circulate. As a cystic fibrosis patient, my immune system is compromised, and I have a tendency to pick up any viruses within a hundred-mile radius—at least, that's what it often feels like! Not only am I more likely to get colds and other illnesses in the first place, but those illnesses are nearly always much, much worse for me than for a regular person. What may be a case of the sniffles for you typically turns into a lung infection for me, nearly always requiring antibiotics and frequently requiring a hospitalization or course of home IV antibiotic therapy.

And don't even get me started on more serious viruses, like influenza, which can be a literal death sentence for CF patients. In 2007, while I was engaged, I caught the flu; I was almost immediately hospitalized, and ended up going into the hospital something like 7 times over the next 18 months. It took me at least that long, if not longer, to feel like I was back on my feet health-wise.

Every winter, I personally know far too many peop

le with CF who die—and quite often, the infection that leads to their decline is caused by a cold, influenza, or other virus. And death is only the most dramatic result. Every winter, I also see far too many friends spending months in the hospital, enduring cycle after cycle of body-destroying extra-strength antibiotics, and, like me, finding themselves unable to engage with life at all because their strength is so totally zapped by dealing with persistent infections.

CF patients aren't the only population at risk, either. Cancer patients, transplant recipients, and medically fragile children and adults all can have life-threatening reactions to a virus that, for you, manifests as an annoying case of sniffles.

Every year when I blog about this, I get push back in two primary ways: from people with kids who are sick all the time, and from people who don't have the option of taking sick leave from work. I get that, I really do. I've been that parent before - there have been times where Kate was sick over and over for months in a row. And I understand, also, that there are lots of jobs where a worker is penalized or let go for missing work, regardless of the excuse.

In light of those issues, here are some things that you can do to mitigate the effect of your illnesses.


1. If you can stay home, do so. Postpone the shopping trip. Get takeout instead of eating at a restaurant. Stay home from church—truly. Church is one of the big danger zones for me, because people have a tendency to come regardless of how they feel. Really truly, you can nearly always find someone to fill in if you have something to do, and those of us with compromised immune systems will thank you. If you really cannot get out of a responsibility and must go sick, see #2 and #3.

2. Be honest. If you're going to a gathering where you know that someone with a compromised immune system (or a baby) will be, let them know how you're feeling. Describe your symptoms and let them tell you what they feel comfortable with. Work out a plan you both feel okay with.

3. Wear a cheap mask. You can get inexpensive disposable surgical masks at any drug store. Did you know that wearing a standard paper mask won't actually protect the wearer from viruses? That's why I don't wear one when I'm out during cold and flu season (I actually just purchased a pricey fitted mask in the hopes that it can help me stay safe this winter, but that's not an option everyone has). However, what those paper masks do very well is protecting the people around you from your germs while you're wearing it. If you have to go out while you're still symptomatic, consider wearing one. Also, use hand sanitizer, wash hands frequently, try not to sit close to anyone else, and make sure to cover a cough.

4. Learn to tell the difference between allergies and a cold. If you or your kid has a stuffy or runny nose that isn't going away after several weeks but has never been accompanied by a fever, body aches, or a cough, it's probably allergies... But if that runny nose just started, give it at least a few days before deciding it isn't a cold. Contrary to popular wisdom, a clear runny nose is no safer than a green one, and it actually usually comes at the point when a cold is most contagious (ie the beginning).

Remember how Smoky the Bear said "only you can prevent forest fires"? The same might be said in this case: only you have the power to help make public spaces a safe place for those of us with compromised immune systems to be!