January 2018 Reading Recap

Ever since starting my Instagram account dedicated solely to books (aka bookstagram), I’ve been getting a LOT more reading done. And since I could talk about books all day every day, I figured posting a monthly reading recap would be a good way to give this ol’ blog a little much-needed revival. So let’s get to it!

Beartown by Fredrik Backman –I’m not sure where to even begin with how to talk about my love for this book. Everyone said it was amazing, yet it still took me by surprise. The depth of feeling it evoked, the love I developed for every single one of the characters — I simultaneously didn’t want it to end but couldn’t wait to see what happened. In the beginning I was a little frustrated with how slow the story was to develop, but I quickly recognized — and came to appreciate — how necessary and intentional that was. The time Backman spent developing each character, as well as Beartown itself, made you know them intimately and care for them deeply. This was quite a first book for 2018. I’m not sure how anything else I read this year can live up to it — it has earned a firm place in my top 10 books of all time. All I can say is READ IT.

Eleanor Oliphant is Completely Fine by Gail Honeyman — I read this immediately after Beartown so it had a lot to live up to. To my surprise, it exceeded my expectations; I LOVED this book. Eleanor is a troubled girl with a more than quirky personality that made me laugh and cry. It didn’t take long to fall in love with Eleanor and it was impossible not to root for her. Watching her discover herself, and develop a truly special relationship with Raymond, made this one of the most charming, heartfelt, and delightful books I’ve read in a while. We could all stand to be a little more like Eleanor.

Invisible: How Young Women with Serious Health Issues Navigate Work, Relationships, and the Pressure to Feel Just Fine  by Michele Lent Hirsch — As a young woman living with a chronic illness, I jumped at the chance to read this. Living with cystic fibrosis has had an enormous impact on every aspect of my life, both in the tangible sense and in the way I view my life and plan for the future. It can be incredibly isolating to live a life that feels so different from your peers, and I’m always searching for any kind of media in which I might be able to get a glimpse of myself. (Thank you to Beacon Press for providing my copy in exchange for an honest review! Full review on Goodreads.)

By the Book by Julia Sonneborn –A loose translation of Jane Austen’s PersuasionBy the Book is a light, fun, entertaining read from author Julia Sonneborn. If you like a charming romance and are a book nerd, this might just be the perfect palate cleanser for you. (Thank you to Gallery Books for providing my copy in exchange for an honest review! Full review on Goodreads.)

The Four Tendencies by Gretchen Rubin (audiobook) — This was my first audiobook and it was perfect. As someone who has trouble staying focused, listening to fiction has proven difficult. But the subject matter combined with Rubin’s calming voice kept me engaged and interested. Plus, I found this book to be incredibly helpful — I’m for sure an Obliger who falls prey to rebel tendencies when I reach burnout. I feel like now I’m better equipped to establish systems to help keep me accountable and from reaching burnt out so quickly. I highly recommend The Four Tendencies for anyone, especially those interested in learning more about personalities.

Red Clocks by Leni Zumas — I had a copy of this book for a couple months before I finally picked it up, I only wish I’d read it sooner. Red Clocks tells of a harrowing future, one that feels eerily close and all too possible. With short, powerful chapters, Zumas tells the story of five women and the impact of the Personhood Amendment, a law that governs women’s bodies to an extreme (a very real extreme). I flew through this book, both eager and terrified to find out what happened to the biographer, the wife, the mender, and the daughter. As a woman who has pondered the ways in which our government could dictate what I do with my body, I read this book with a lump in my throat, unable to stop turning the pages.  (Thank you to Little Brown for providing my copy in exchange for an honest review! Full review on Goodreads.)

A Fatal Grace by Louise Penny — The second book in the Inspector Gamache series was equally enjoyable as the first. I like how we’re starting to get to know the key players better, especially Armand. Losing myself in Three Pines will always be a treat, but I’m eager to keep reading since most fans say the books tend to get better with each one. (If you’re an LP fan, let me know if you agree!) Even though I’m only two books in I’m glad I started the series and am excited that there are still many more ahead of me.

The Healing of America: A Global Quest for Better, Cheaper, and Fairer Health Care by T.R. Reid — As someone with a chronic illness, health care is a necessity. My life depends on medications that cost hundreds of thousands of dollars each and every year, not to mention doctors appointments, hospital stays, lab tests, bloodwork, etc. The issue of access to affordable health care has been on my mind for years, particularly during the past 12 months as the current administration tried to repeal the Affordable Car Act. (Full review on The Bookly Club.)

All in all it was a great month of reading. In the meantime, you can follow what I’m currently reading on Goodreads or at @kathareads. Come let me know what books you’re reading and loving!

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A Little Less Lonely

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.

On Not Feeling Well and a Thank You

the VEST - my best friend the past couple weeks
the VEST – my best friend the past couple weeks

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.

On Friendship, Cheryl Strayed, and Unending Loneliness

“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.

Because of that, I feel profoundly alone.

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.

At least, that’s what I’m telling myself.

On Sadness and CF

Life’s been really wonderful recently. *knocks on wood*

I’m loving my job – both what I’m doing and the amazing people I get to do it with. There are plenty of adventures with friends in the coming months. And Mike and I are planning a big trip later this year. I’m soaking up life’s sweetness and feeling very blessed.

But there’s also a sadness I can’t shake.

The older I get, the harder it is to not become my disease. It’s incredibly important to me to be more than cystic fibrosis, but with each big life event I feel more and more trapped by the hard-to-swallow truths of living with CF.

The big one? Knowing a shortened life – one riddled with scary health obstacles – is a strong possibility.

As people get older, life gets more complicated, no matter who you are. And when you throw in a life-threatening illness, the complications seem to grow exponentially. It’s a daily struggle to live my life outside of my disease – to not let it seep into each moment of my day.

My biggest fear is that it’s changing me. The loneliness… the fear… the what ifs… I’m scared they’re slowly chipping away at who I am.

In many ways, having cystic fibrosis has helped me become who I am. It’s made me better, stronger, more empathetic. And I wouldn’t change any of that. But it’s also made me more fearful, less spontaneous, and always worried.

There’s this HUGE part of my life that very few people are able to understand. With cystic fibrosis, there’s no break, no day off, no vacation. Every single day there are pills to take, treatments to do, neb cups to wash, scary thoughts to try and ignore.

It can be isolating and makes me feel separate from people, like I’m part of this “other” group. So I fall into the habit of pulling away or hiding parts of myself in order to feel more normal.

I know that much of this is just that, how I feel, and not how I’m actually perceived. And that’s a reminder I keep tucked away to pull out at times like this.

I’m sorry I’ve been absent from this space. It was mostly because life’s been keeping me busy with lots of goodness.

And partly because I couldn’t find the words. While I’m still not sure I explained it perfectly, I hope it at least shed some light on the emotional difficulties that can come with chronic illness.

Tonight I’ll make dinner with my husband, have a glass of wine, do my meds (while watching the hot men of “Chicago Fire” because, hello, that makes anything better), and let this sadness rest here for a bit.

As always, thank you for reading and allowing me a moment of therapy.

xo