The CF community has been hit hard the past couple of months. Many have lost the fight, while others are spending the holiday fighting as hard as they can. No matter how close we are, or how well we know each other, the loss of one of our own never gets easier.
This morning I learned that a man I had only started to get to know passed away. He was an incredible force in the community and had dedicated his life to advocating for this devastating disease.
The news popped up on my Facebook feed in the middle of a meeting, tears immediately springing to my eyes. I silently slipped out, took a few minutes, got a hug from a coworker, and went back in. But this sadness has stuck with me. Sadness for him. For his family. For his community that ran wide and large.
And sadness for those of us with CF. It’s impossible to explain what it’s like to watch your friends die. To know that it’s only going to keep happening. That the older we get, the more friends we’ll lose.
To watch people die from the very disease you have is its own kind of torture.
Sometimes it’s enough to make me want to shut it all out. To turn away and not face what’s happening. But these are the people who understand me the most. Who know my fears and frustrations and anger. We NEED each other–we provide a support that no one else can.
Which is why we have to keep fighting. Even when it feels like an uphill climb we can’t win. ESPECIALLY when it feels like we can’t win.
My CF BFF and I made a pact: that we’ll be here, supporting each other, until we’re 80. And I’m going to do my damnedest to make that happen–for every. single. one of us. And I can’t wait for the day we can celebrate our win, together.
The Lively Show. My podcast obsession is real – I currently subscribe to TWENTY-FIVE. (Please tell me somewhere out there listens to more than that… anyone?) The past few weeks I’ve been consumed Jess Lively’s podcast, listening in the car, at work, while cooking dinner, on walks, etc. No matter the episode, Jess + her interesting guests always leave me feeling motivated + with a renewed life perspective.
Lipstick. I. love. lipstick. And while I’ve been all about bold lips in the past, I’m feeling particularly partial to nudes at the moment, the ones that look like your lips but better, ya know? The newest additions to my ever-growing collection are: Nars Audacious in Anita, Bite Beauty Amuse Bouche in Fig (might be my new fave), and Velvet Teddy + Peach Blossom by MAC.
Clothing. I’ve been paring down my closet the last few weeks in the hopes of figuring out my true style + making it easier to get dressed in the morning. This has also meant adding some pieces with one rule: I must love them. And the LOFT Linen Cotton Sweater (in white) is so good I bought a second… in the same color.
Vivianna Does Makeup. I have a confession: I love YouTube beauty gurus. And my most recent discovery, thanks to The Lively Show, is Anna. Her style – from makeup, to hair, to clothing – is everything I aspire to be. Anna, can we be friends?
TV. I had fallen a little out of love with “Nashville,” but after catching up on the last few episodes I’m hooked again. Connie Britton is everything. Mike and I have been trying to finish “House of Cards” and we’re getting close! Claire + Frank’s relationship is fascinating. And spotting Baltimore locales is my favorite part. I have a love/hate relationship with “Girls” because it always makes me incredibly uncomfortable but I also can’t stop watching. Somehow the characters seem a little more tolerable this season – maybe I’m just finally getting used to them?
Books. I finally finished Boy Snow Bird by Helen Oyeyemi. And I really liked it. As soon as I turned the last page I started reading all the reviews I could get my hands on. Partly because I couldn’t figure out why I liked it so much, and also because there was so much to think about. I found this particularly helpful in articulating what I liked about book. Anyone else read it yet? I also read B.J. Novak’s One More Thing: Stories and Other Stories. It was a quick + funny read that I really enjoyed. (This was April’s pick for The Bookly Club and our reviews up now – check them out!)
This. All of it. I want to read this every morning before I get out of bed.
Letting Patients Tell Their Stories. “Doctors are trained first to diagnose, treat and fix – and second, to comfort, palliate and soothe. The result is a slow loss of vision, an inability to see who and what people are outside the patient we see in the hospital.”
This post originally appeared on the Cystic Fibrosis Foundation’s blog. While this was written a while ago, much of it still applies – and gives a peek into life with CF.
The other night I got in bed around 11 p.m. to read until I fell asleep, which I hoped would be soon as I was anticipating a 6 a.m. wake-up call for my first round of treatments before work. Just as I lay my head down after closing my book, a cough bubbled up in my throat, as if my lungs knew I was attempting sleep. I spent the next two hours sitting up in bed coughing up mucus, getting more and more anxious as each minute passed and my hours of much-needed rest dwindled.
Somewhere around 2 a.m. I finally drifted off, with only four hours between me and the start of the day, knowing that this would follow: I’ll wake up, drag myself downstairs, spend about two hours doing my treatments, and then get ready for the day. I’ll arrive at my office at 9 a.m., coffee in hand, makeup on, and no one will know what my night actually looked like.
It is in these moments – when cystic fibrosis tries to get the best of me – that I feel most alone.
For most of my 30 years, my life has been on the same path as my peers’. I graduated from high school, and then went away to college where I did college things like go to parties and join a sorority. After college I got a job, moved into my own apartment, and started my adult life. I got married and bought a house. All the things my friends were doing, too.
But suddenly things feel different. Friends are advancing in their careers, starting families, and planning their futures. And I’m not sure I’ll be able to do any of those things.
Instead, I worry about why my cough has increased, what my next sputum culture will show, and how I’ll be able to make it through the day on four hours of sleep.
I spend my days doing treatments, going to work, doing more treatments, getting some (restless) sleep, only to wake up and do it all over again. I’m often tired, and constantly coughing or congested.
And that’s just the physical stuff.
Emotionally, I struggle not to feel like I’m suffocating from the unending sadness that comes with having a life-shortening illness. I struggle to feel joy for my friends and their milestones. I struggle to relate to almost anyone. And that is so very lonely.
Isolation, according to the all-knowing Merriam-Webster, is “the state of being in a place or situation that is separate from others.”
And that’s a pretty good definition of how I have felt as I’ve entered my 30s. To live a life, day in and day out, that few people understand is hard – especially when us CFers look mostly healthy on the outside but often feel a lot worse on the inside.
Creating a community online has been an immense help in fighting this loneliness. It will never be a substitute for a real hug or a coffee date, but it helps make us all feel a little less alone, a little less misunderstood and a little less like we’re in this by ourselves.
Hello? Anyone still there? I don’t want to dwell on the fact that it’s been months (MONTHS!) since I last used this space, because it is what it is. And this place doesn’t need to become something I feel guilty about, but, that being said, I do miss it.
I figured I’d ease back into this here blog by sharing some things I’ve been loving, reading, eating, etc. this past month (to be a total cliche, HOW is it April already?!), as well as (what I hope will be) a monthly playlist. Let’s get to it!
@iamhertribe. This Instagram account has quickly become a favorite. Their daily, life-affirming quotes inject some (often-needed) clarity into my day.
Snapchat. I’m late to this party, but I’ve been loving it. Less pressure than Instagram (although Insta will always be my fave) and just lots of fun. You can find me at katharinescriv. Come say hi!
Life Lately Podcast. Clara + Brooke are two friends who live long distance and realized the conversations they had with each other might be of interest to others – and they were right! I’ve really enjoyed all the topics they’ve covered, from holistic wellness to sex + relationships, and look forward to new episodes every week. This week’s is on loneliness, something we all experience at some point in our lives – check it out!
Beauty products. Confession: I have a problem. I CANNOT get enough of hair products, face primers, masks of all kinds, etc. etc. etc. In the interest of trying to save a little bit of money, I’ve started exploring drugstore brands to see if I can find more affordable products to mix in with my higher-end stuff. My most recent finds are:
Covergirl Lash Blast + L’Oreal Telescopic mascaras. For work I use the Covergirl mascara on its own (great volume, less lengthening, and also great for reapplying later in the day – no clumps!) and for going out/special occasions I use the two together for both volume + length. LOVE.
Birchbox. I abandoned this for a couple years but am back and loving it. My current favorite sample-turned-full-size purchase is the IPKN Radiant Primer. Adds a bit of glow under your makeup – perfect for the warmer weather that’s (hopefully) right around the corner.
These shoes. I desperately need new shoes, and these were my newest pair – comfy + cute!
Books. I recently finished Anne Lamott’s Help Thanks Wow and WOW. This has earned a permanent spot on my nightstand for daily reference. I’m a few chapters into Boy Snow Bird by Helen Oyeyemi and like it so far. Final thoughts to come. Next on my TBR list is One More Thing by B.J. Novak, this month’s Bookly Club pick (come read with us!).
Articles.Joy Bryant wrote about not having kids in Lena Dunham’s Lenny Letter and YASSS. As someone who is still undecided on the kids/no kids issue, it’s a discussion that fascinates me and I’ve been reading anything + everything I can get my hands. Joy Bryant does a great job using humor to defend the choice not to have kids. I also loved a piece in the New York Times about women + friendship, and the benefits of female relationships that romantic ones don’t provide.
Blogs.The REWM. Rachel shares some of the best articles floating around the internet and I look forward to her weekly “week in review” posts each, well, week. A Practical Wedding. I’ve been following them since I got engaged and their content is still relevant as a married person. Full of smart + educational articles about all sorts of women-centered issues.
Galley Foods. I’ve used them once a week for about the past month and it’s been a lifesaver. Their menu changes weekly and they offer five different dinner choices every day, ranging from $12 to $16. Via their website or app, choose the day, meal, + delivery time and a fully cooked + delicious meal arrives at your door. All you have to do is heat it up for 10 minutes! Sadly, it’s only available in Baltimore right now, but I love it. If you’re in the area, I suggest giving it a try. (If you use my link, you get your first meal free!)
Relay Foods. A couple weeks ago I was sick but needed groceries. Battling crowds at the grocery store was the last thing I wanted to do, so I turned to Relay Foods, an online grocery store I’d been wanting to try for a while. I was able to take my time choosing what I needed and was able to pick it up the next day at a location near my home. Again, lifesaving. (And if you use my link, you get $20 off your first order. Pssst, they also deliver!)
Clavel + La Cuchara. Over the past couple weeks, I was able to cross off two “must-try” restaurants – a list that keeps growing thanks to the wonderful food culture here in Baltimore. Both of them were delicious + worth checking out if you live in the area.
Cystic fibrosis is a big part of my life, there’s no changing that. But that doesn’t mean it has to be all CF all the time around these parts. So I figured I’d share a few things that have brought me joy (ahem, doughnuts), made me think, or struck me in some way. Feel free to share your own!
Another of my favorite online ladies is Jolie, of Brim Papery fame (maker of my “girl you are one boss bitch” mug). Her latest post put into words some of what I’ve been struggling with these past few months. (Aside from the title itself. So before you ask, no, I’m not pregnant.)
This trailer for Tig Notaro’s new Netflix documentary had me immediately adding it to my queue.
Speaking of books, I just finished this one (definitely worth reading), this one is soothing my soul, and hoping this one lives up to the hype. I’ve been thinking about doing mini book reviews – yay or nay?
My mom and I checked out a new vegan doughnut shop over the weekend. If you live in the Frederick area, check it out – I give it two enthusiastic thumbs up.
And because I CANNOT get enough of her, make sure you give her Dear Sugar podcast a listen. Pre-order her upcoming book. And while you wait you can read her other books, Wild and Tiny Beautiful Things. She has a way of speaking to the soul that no one else does.*
If you’re like me and your “to be read” list gets longer every day, use this calculator to find out just how much time it will take to read your way through that growing stack.
And a couple other places you’ll find me this week:
My review of We Should All Be Feminists on The Bookly Club, the online book club I started with three college friends… and yes, we’re all named Katharine(erine)(ryn). Follow us on Instagram and Twitter at @thebooklyclub for updates.
Guys, I can’t even begin to explain how much all the love you showed after my blog post meant to me. You always know exactly how to lift me up when I need it most. THANK YOU. I often fear I leave this space for too long and will come back to silence, but you are some of the most loyal blog readers I could ever ask for. Thank you for that, too.
Basically, just know I am so very grateful for each and every one of you ❤
* * *
In some not so great news, after over two weeks of not feeling well, I’m heading to Hopkins tomorrow (Tuesday) to see if they can figure out what’s going on.
I’m coughing up more mucus – well, coughing more, period – and I have a deep ache in my chest. Despite doubling up on treatments – a process that takes three to four hours a day – I still don’t feel as well as I should. Better maybe, but not great.
(That pic up there? That’s me and my VEST – a form of airway clearance. We’ve become pretty close lately. Maybe I should name it – suggestions welcome.)
Doubling my treatments means meds and work alone takes up 12 hours of my day. Not eating, not sleeping, not doing regular household things, not spending time with Mike – just meds and work. And I might be a little less grumpy if it was helping, but It’s frustrating to work twice as hard to feel only half as good.
But what’s weighing on me most heavily is the fear that’s always in the back of my mind: What if this is it? What if this is my new normal? What if I don’t get to feel better than this?
Because that’s what cystic fibrosis is. A progressive disease that no matter what I do gets worse with time.
I know that kind of thinking doesn’t do any good. So instead I’m telling myself this is just a hiccup. Some extra gunk that needs clearing out. A bacteria they can treat. And with some time I’ll get back to feeling like myself.
In the last few months I must have started and stopped a half-dozen posts, only to delete them out of frustration. Putting into words what I’m going through feels impossible. Plus, I get caught up in the fear of being judged. I know that in comparison to a lot of other CFers – to a lot of other people that are struggling – I’m lucky. I have an incredibly supportive husband, a beautiful home, a job full of talented and kindhearted people, and some deeply loving friends.
But I wouldn’t wish CF on anyone. And I’m trying to get comfortable with owning my feelings, my experiences, my story. Yes, my struggle isn’t the same as someone else’s, but that doesn’t make it any less valid or any less painful. Or any less relatable.
I believe that sharing in each other’s troubles and triumphs makes us better, more empathetic, more compassionate people. I hope I’m right.
I’ve talked about sadness, loneliness, fear, exhaustion before.
In the past those feelings have faded and with some time I get back to feeling like me.
It’s been more than six months and I still don’t feel like myself. I can’t shake the sadness. The fear. The anger. But mostly the loneliness.
Cystic fibrosis is a hard disease to understand, even for those who have it. I’m constantly learning from the CF community because this disease is different for each and every one of us.
It’s especially mystifying for those without it.
For the most part, cystic fibrosis is invisible. I look healthy. My life looks “normal.” Even the hacking cough is often assumed by others to be just a cold.
Inside is another story. I spend hours each day doing treatments and taking pills, to feel only a fraction as healthy as others. Those same meds, designed to help me feel better, have side effects – an upset stomach, headaches, risk of vision loss, etc. My sleep is often full of coughing fits at 1am, 3am, 5am. I wake up more tired than when I went to bed. I spend mornings spitting mucus into the sink in between putting on my makeup and deciding what to wear. Sometimes I cough so hard I throw up.
Very little of this is seen unless you live with me. Even then, you can’t see how some breaths are a struggle, or what it’s like to have an imaginary elephant sitting on your chest, or how it feels to cough for 12 of your 24 hours each and every day.
I don’t say this for pity, but because sometimes I fear I’m not honest enough. Putting on a brave face and being as positive as possible gets me through hard days, but it doesn’t always give an accurate look at what this life with CF is really like. For those without CF, it is an incredibly tricky, difficult, deceiving disease, which makes it hard to understand.
Part of the loneliness is a reality I need to get comfortable with. I can’t go cry on the shoulder of one of my CF friends because most are scattered throughout the country, and even if they aren’t we carry bacteria that’s dangerous to each other. And my friends without CF can never know what it’s like to be in this body. To fear every cough, every appointment, to know how uncertain – and short – my future might be.
The last few months have become so consumed with all things CF, it’s hard for me to untangle myself from it. It feels like everything – having kids, pursuing a career, traveling, finances – is wrapped up in having CF.
I’m starting to fear that being friends with me is too hard for some people. That my frequent sadness weighs them down. My inability to have conversations about life – without CF being a part of it – is frustrating. I fear they tire of hearing how hard it can be. How scared I am. That I need too much. That I expect more than most.
I am not like most 30 year olds.
I know it can be hard to figure out what to do or say or how to be around me. One of my writing idols, Cheryl Strayed, put into words what I couldn’t: The best thing you can do for anyone going through something, whether that thing is short lived or permanent, is to “bear witness” to their pain, their struggle, whatever it is.
“…the kindest most loving thing you can do for her is to bear witness to that, to muster the strength and courage and humility it takes to accept the enormous reality of its not okayness and be okay with it the same way she has to be.
That’s what the people who’ve consoled me the most deeply in my sorrow have done. They’ve spoken those words or something like them every time I needed to hear it; they’ve plainly acknowledged what is invisible to them, but so very real to me. I know saying those cliché and ordinary things makes you feel squirmy and lame… It feels lame because we like to think we can solve things. It feels insufficient because there is nothing we can actually do to change what’s horribly true.
But compassion isn’t about solutions. It’s about giving all the love that you’ve got.”
If I can give one piece of advice, it’s this. If you have someone in your life who’s struggling, let them know you’re there. That they are enough. That they’re doing a good job. And that you’re sorry they have to go through this hard thing. That it sucks.
No, you can’t fix it. But they know that and they don’t expect you to. The best thing you can do is love them as best you know how.
And if you’re feeling lonely, like me, my words of wisdom are to sit with it. Feel as much as you can and know that this period of struggle is a lesson that will bring you to a version of yourself that’s stronger, more compassionate, and ready for whatever life throws your way.