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.
“Remember, we are all the same at our core. Everyone wants to be happy and no one wants to suffer.” – James Gummer
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.
I’m back! Since you never really know who’s reading this little ol’ blog, I kept it a little quiet that Mike and I were going to be out of the country for two weeks. It was a dream trip, spending four nights each in Iceland, London, and Paris. And once I get all my thoughts together about it I promise to share more. (But for now, you can see plenty o’ pics by following me on Instagram.)
I actually launched For 30 More while I was gone – something I couldn’t have done without my amazing, talented, and super helpful friend, Renee. Gosh guys, you have totally overwhelmed me with your generosity. Not only have the donations been pouring in (barely one week in and more than a third of the way to my goal), but the tweets and Facebook posts and sweet notes have left me truly humbled. THANK YOU. Thank you, thank you, thank you.
I am SO excited to see what the next 24 days brings. There are still TONS of fun giveaways left, and a couple other things in the works, so stay tuned!
* * * * *
While I know it’s technically not fall yet, September 1 feels like the official end of summer. It also marks the start of my very favorite time of year… and my birthday month! Clearly, there’s lots to look forward to. What exactly, you ask?
kicking off my 31st year with some of the very best friends
(*My blog friend Jessica, of How Sweet It Is, will be making an appearance as part of her book tour for her very first cookbook: Simply Delish. I’m SO FREAKING excited to get to see her ON my birthday, and highly suggest if you’re in Baltimore to go say hi to her, too.)
Since I’ve been a bit absent, I thought I’d share a few things I’ve been enjoying.
– This weekend, using the excuse that I had to restock our fridge, I spent a ridiculous amount of time at a new Whole Foods. #happyplace
– Read “We Were Liars” by E. Lockhart while on vacation. While it’s not one of the best books I ever read, it was a fast and entertaining read.
– Can’t stop listening to this, this, and this.
– Bought a pair of these to take on our trip and LIVED in them. What took me so long?
– Binge watching Orphan Black and Homeland. #cantstopwontstop
– Made this twice in one week. Add it to your meal rotation, stat.
– My bestest friend in the world will be giving birth any day now to a beautiful baby girl – I am BEYOND thrilled for them and cannot WAIT to squeeze the cheeks off of her.
P.S. Renee + I will be announcing another giveaway today! You can be entered to win via donations and spreading the word (make sure to use #for30more!). Keep an eye on Renee’s blog for more info.
I’ve had a blog post in the works for days now, coming back to it periodically, editing, deleting. But for some reason it never seems right. And so it stays a draft.
Thanksgiving approached, and I planned a post about all the millions of things I’m thankful for. But it never made its way out of my head.
So here I am, with not much to write but lots of words on the tip of my tongue.
Since I love lists (who doesn’t?), let’s start there and see where it goes.
The happenings on this side of the internet…
New job! (I’ve never been one to talk about work on here, and that will still be the case. But let’s just say I love it, and feel blessed to have found something I like doing with people who make each day an absolute blast.)
CF things and stuff. Most of what said draft is about. On the sweet side of life with cystic fibrosis, I’ve had the opportunity to speak at various events sharing my CF story, something that continues to be one of the most terrifying and rewarding things I do. (If you’re in Baltimore and need something to do tomorrow night, I’ll be speaking at Baltimore’s 35 Finest. Tickets and more info here.) For those curious, my wonderful husband recorded my speech at An Evening on the Severn:
A couple weeks ago, one of my favorite restaurants in Baltimore turned 2 – Wit & Wisdom. I was lucky enough to attend their fabulous birthday bash (a big thank you to Renee + the Wit and Four Seasons crew!), which meant eating things like scrapple sliders, oysters, and macarons. I know, rough. If you live in Baltimore and have yet to go there, make a reservation STAT. (And if you’re planning a trip to Charm City, make sure it’s on your “to eat” list.)
me & Renee at #WitTurns2
Thanksgiving = lots of time spent with family, lots of food, and snow! (Manmade, but still white and fluffy.) Grateful isn’t enough to describe how I feel about this life I’m lucky enough to have. The people are the sweetest part – including you, dear readers (are you still out there?).
Thursday is the Monument Lighting here in Baltimore – one of my favorite events of the year. The holiday season has arrived!
Somewhere around this time six years ago I met two of my very best friends. We met when single, renting apartments, and in different jobs. We’re now all married, one of us has a baby, and we’re all homeowners. Girlfriends that go through those kind of life changes are irreplaceable. And we’re celebrating our friendship at Spoons – our favorite brunch spot – this weekend. Ladies, they say a friendship that makes it seven years will last a lifetime – just one year to go before we’re officially stuck with each other.
There’s just a peek to get you guys a bit caught up. I hope you all had a Thanksgiving full of great food and even better company. I promise to be back very soon.
xo,
K.
P.S. Today is #GivingTuesday, a day to raise money and awareness for whatever cause strikes a chord with you. And as you all know, cystic fibrosis is the cause nearest to my heart. As someone living with CF, I can personally attest to the difference the CF Foundation has made in my life. Each and every person who has spread the word, attended an event, and donated (whether it be their time or money) has taken part in the HUGE strides being made to improve the quality of life for CF patients – and to one day find a cure. If you hadn’t planned on giving today – or weren’t sure where to give – check out my fundraising page or head on over to BmoreGivesMore. Every single dollar counts, for whichever cause you choose. If you can’t afford to give this year, passing it on and spreading awareness goes just as far.
As always, THANK YOU from the bottom of my heart for your constant support. It never fails to lift my spirits and put a smile on my face.
It’s day 9 of Cystic Fibrosis Awareness Month and time for me to share my answers to the rest of your questions (here’s Part I if you missed it)! After the video, I’ve provided a writeup of both the questions and answers, along with any links I promised I’d share, so you can refer to that if you’re unable to watch.
There’s no point in me rambling on, so here you go!
(Again, these answers are from my own personal experience with CF, and the information I’ve obtained on my journey living with this disease. Please don’t take any of what I say as advice or the only answer. Us CFers each have our own story and our own routine as prescribed by our care team. Thanks!)
Katie asked: When are the times, or are there times, when you forget you have CF?
This is a tough one. I’m not sure I ever totally forget I have CF, but there are plenty of times when I don’t think about it. Like I talked about in part one, it’s important to remember that there’s more to me than having CF. Taking time to enjoy the rewarding parts of my life – like my husband, friends, family, the city I live in, hobbies – helps me not to dwell in the difficulties of having CF.
Kara asked: I love the Great Strides walks we do to raise awareness, just curious if there are any additional events or other ways we can get involved locally?
For those of you unfamiliar with Great Strides, it’s a national walk event sponsored by the CF Foundation – and it’s the biggest fundraising event they have. Last year nearly $40 million dollars was raised to help fund cystic fibrosis research (I talked about why fundraising for CF is so important in Friday’s vlog).
For other ways to get involved, the best advice I have is to check with your local CFF chapter. (Just check out the link above to help you find the chapter closest to you.)
Sarah asked: Do you feel like CF limits you from doing things on a daily basis? Not necessarily big life changing things, just little daily social events or activities?
Having my life be as normal as possible is incredibly important to me. That’s just one of the reasons I do my best to take good care of myself – that means no skimping on my daily treatments, working out as often as I can, getting enough sleep, etc. But there are days where CF gets in the way. I’ve had plenty mornings that I wake up coughing my guts out and have to forgo a workout. Time with friends that has to be cut short because I need to get home to do my treatments. Or nights with little sleep because of more coughing. I feel very lucky that right now I’m healthy enough to lead a full and productive life.
Please feel free to leave any other questions you may have – new ones or anything that relates to this week’s Q&A – in the comments below.
Hello lovely readers! Hope your day is going swimmingly.
Alright… here goes nothing! Ahem, introducing my first vlog! (It took an embarrassing number of tries to record one that didn’t make me feel like a total fool. So be kind 😉 )
Click here for Steve’s fundraising page and here to ask a question on yesterday’s post. Thanks for watching and supporting and being overall wonderful people! (And keep checking back in during May – Cystic Fibrosis Awareness Month – to learn more about cystic fibrosis.)
I have so many thoughts and feelings and things I want to share. But this one seems most important right now.
Most of you may not know this, but cystic fibrosis patients aren’t able to be around each other.
About 10 years ago, not long after I was diagnosed, the foundation discovered we could contaminate each other with very life-threatening bacteria. To prevent the spreading of these germs, an infection policy was put in place. The original guidelines stated that CF patients could not be within three feet of each other. Whenever I attended CF Foundation sponsored events, I was given something to wear – like a red carnation, a ribbon, etc. – to signify I had CF, that way us CF’ers could steer clear of one another.
Recently, researchers discovered that there are even more scary bacteria than they originally thought – and they’re even more contagious. So the regulations were amended to reflect the severity of these new discoveries. Now, instead of three feet, we’ve been instructed to keep six feet apart. And at any indoor CF Foundation-sponsored event there is to be only one CF patient present.
For a disease that is already isolating, these changes were hard to swallow.
Had I been diagnosed in infancy, I probably would have spent my childhood at camps and support groups for CF patients, forming lifelong friendships with kids that understood just what I was going through. But because of my late diagnosis (both a blessing and a curse), I’ve only known the world in which we can’t be near each other.
This means I’ve never met another CF patient face to face; I’ve never given someone else with CF a hug; I’ve never visited a CF friend in the hospital.
It’s made things quite lonely.
My husband, family, and friends do all they can to listen and give advice, but they know it’s not the same as if it came from someone who knew exactly what I was feeling.
Most of the time I try to put on a brave face. I have CF and, until a cure is found, there isn’t any changing that. So what’s the point in wallowing in what sucks about living with this disease?
But right now? I’m aching for someone who knows how hard it is to make big life decisions when you don’t know what your future holds – or if you have a future at all.
Right now, the average life expectancy for a person with CF is 37. This year I turn 29.
I don’t want to limit my life because I have CF, but I also don’t want to waste it.
When it comes to my professional life I’m torn. I don’t want to spend my healthy years working toward a career I won’t ultimately be here to see. But I don’t want to throw in the towel and give up on pursuing what I love. (Not to mention the fact that we’re not in the financial position for me to stop working altogether.)
My personal life brings its own struggles. I feel myself pulling away from friends because I feel so different than them. It’s hard to watch the people you love do things you aren’t sure you’ll ever get the chance to experience. I desperately want to be happy for them, to share in their joy. But I also feel this deep sadness for myself and what I might not get to do.
But I don’t want to make them feel bad. I don’t want to take away from their happiness.
So, not knowing what else to do, I end up keeping to myself.
It’s times like this that having coffee with another CF patient would help. Being able to talk to someone who’s been there – who understands what I’m feeling – would make a big difference. It would give me an outlet. Somewhere to turn other than keeping everything inside.
Instead I feel frozen. Unable to make a decision. Unable to explain how I’m feeling.
It can be hard to ask for help. To admit you aren’t doing as well as it may seem. In a society that views vulnerability as weakness, admitting to feeling scared and unsure is damn near impossible.
This is the one space I have to share what it’s truly like to have CF. To share the emotional toll cystic fibrosis can take. To let go of some of what I keep bottled up. And to hope that someone else reads this and can help in some way, however small.
It’s also a way to reach each out to those in a similar place. Those who also feel alone. Those who don’t think anyone understands.
Because CF or no CF, we all have our own stories and our own struggles. And ultimately we all just want to be heard.
Today I’ve been busy with freelance projects (woohoo!) and haven’t had time to finish a blog post I started. However, I did take a quick break to watch a couple of our wedding videos and thought I’d share one with you. At Katie’s wedding a couple years ago, the bridesmaids all danced to “Teenage Dream,” quickly making it “our song.” So when it came on during our reception, we all rushed to the dance floor! (Video credit goes to my matron of honor, Katie, and her husband, Ted. Having these videos to look back on is SO FUN!)
Since the last couple of posts were on the heavier side, I thought it was time for some fun around these parts! (To see where I got the idea for this post, check out the first “What’s Making Me Happy This Week.”)
Let the fun begin!
1.) Do you love country music? Did you want to be Tammy Taylor from “Friday Night Lights?” Then you should be watching “Nashville.” Since I often enjoy the same things as Jessica from How Sweet It Is, I figured I should give it a shot. Um, SO GLAD I DID. I watched 13 episodes in an embarrassing amount of time and am now eagerly awaiting a new episode. (Speaking of which, WHEN WILL THERE BE A NEW ONE?!) (If the amount of caps used has any correlation with how much I love this show, then I obviously LOVE IT.) Bottom line: Drop what you’re doing (yes, even reading this blog post, it’ll be here when you get back) and WATCH IT. Hulu has all of the episodes available. (This is not an endorsement, although I do love me some Hulu.)
2.) In an attempt to save money and fulfill my current role as stay-at-home wife, I’ve been making dinner a few nights a week. This vegan sweet potato + quinoa chili was perfect for this gross end-of-winter weather we’re having. And it was super easy. I had almost all the ingredients on hand and it took about 30 minutes from start to finish. Plus there were plenty of leftovers. (Sidenote: Mike ate it. For those of you who don’t know him, this is a big deal. My husband can be somewhat picky when it comes to food – some things he dislikes: strawberries, broccoli, ice cream flavors other than vanilla, anything with a “strange” texture, shrimp, any fruit other than bananas + apples, yogurt. The fact that he ate a whole bowl of sweet potatoes, quinoa, and black beans speaks highly of this dish.)
3.) The 20/20 Experience. I think that’s all I need to say. (I didn’t think my Justin Timberlake crush could get any bigger. But it did. It really, really did.)
4.) Rachel Bertsche wrote MWF Seeking BFF with me in mind. Okay, that’s not true, but it seemed like she did. Confession: Making friends has never come easily for me, especially in adulthood. I tend to be shy when I first meet people, and it can take some time for me to warm up. Going to a small university and pledging a sorority helped me form friendships that I will be forever grateful for. And joining a book club post college was one of the best decisions I’ve made since moving to Baltimore. But your 20s bring a lot of changes, and sometimes that means friends come and go. This book made me feel like I’m not the only one who struggles to make those same friendships that came so naturally in college. Not only did Rachel share her experiences with “dating” 52 different women, but she also included research about female friendships that I found very helpful. Definitely pick this up if you’re looking to meet new people but aren’t sure how to go about it.
5.) The last thing that put a smile on my face this week is for my Baltimore readers. I attended my first Stoop Stories at Centerstage on Monday and am now begging Mike to take me to all of them. For those who haven’t been, Stoop Storytellers is hosted by Jessica Henkin + Laura Wexler – two hilariously smart Baltimoreans. At every show, seven people tell a seven-minute story related to a particular theme. (This last one was about the legal system and featured the former Baltimore Police commissioner, an investigative producer at Fox45, and a public defender, to name a few.) The show also includes live music from different local artists. It’s a great way to learn more about Charm City (and it’s super fun, too!).
It started great. I was up at 6:30 with a cup of coffee and a slice of banana bread, watching CBS This Morning.
Then a coughing fit started, one that had me leaning over the sink. It wasn’t pretty.
It’s been a long time since I coughed like that.
It’s hard to explain the toll that takes on my body. My chest hurt, my stomach was sore, and my back ached. But mostly I was just exhausted. Completely drained.
A couple hours later I managed to pull myself off the couch and walk to yoga. I knew that even if it was hard, I’d be glad I went.
The rest of the day I struggled to stay present. It’s a lot easier to be positive and hopeful when I’m feeling good. But when I have days like these – when CF is hard to ignore – my mind wanders. Back to the what ifs. To other CF patients. To my biggest fears.
And then I saw this video. And I realized it was just ONE day. It doesn’t define me or my CF or my future. It’s just ONE bad day.
So I took a nap. Made a healthy dinner. Did my meds. Went to bed early. Slept in.
And this morning I woke up feeling much better.
CF may give me some bad days, but it doesn’t have to hold me back.
* * *
One of the things that helps get me through my bad days is my support system. I have an amazing group of friends and family who have my back every day.
Steve Beck (a different Steve than in the video above) is one of them. Aside from being a good friend, he’s a phenomenal runner (seriously, he’s freaky fast). And he’s running the Pittsburgh Half Marathon this May to raise money for the Cystic Fibrosis Foundation. It’s not often I ask for donations on this blog, but I want to help Steve reach – and even EXCEED – his goal. Any amount will help make a difference… and bring us that much closer to a cure.
From A to Pink | A Blog by Katharine Scrivener 