My light in the dark

When my husband and I started dating, he had a cat named Tiger. Tiger was a foundling, who came into my husband’s life the same day that he and I met, many years before. I always thought it was kind of cool and symbolic that Tiger and I both met Matt on the same day, and I remember being disappointed that day that I wasn’t the one who ended up with the dark, fluffy, super-friendly kitten. But then of course, as it turned out, I did end up with him… just much later on, in a much more roundabout way. Tiger was amazing and so full of personality and I remember feeling like it took me forever to really win him over. He kept me company through so much of my initial lung disease adventure. If Matt was working at night, at least I still had Tiger to hang out with. He was comforting to me in so many ways, and was my constant companion through some of my most stressful times. And then, in November 2016, he died.

Matt and I were both heartbroken. Tiger was our baby. He made us laugh and he loved us and he kept us company and he brought us joy, and suddenly he was gone. The house felt so empty. We started watching animal videos on Instagram, all the time, to try to fill the void. I would constantly look through my pictures on my phone because, of course, I had tons of Tiger.

I would dream about pets all the time. I had a dream that I was playing with a fluffy, white kitten on our bed, and that time I woke up crying because I missed having a cat so much. Tiger kept me company silently, calmly, patiently… all the things I couldn’t be myself, he sat with me and embodied them. And then when I didn’t have him there anymore to balance me out, I felt it so deeply.

In September last year, we got a kitten. He was, just like the one in my dream from months before, puffy and white. We named him Chowder. He is, more than any pet I’ve ever had before, my baby. He cries at the bathroom door in the mornings if I don’t let him in to get dressed with me. He curls up and sleeps on me when I’m sick. Today, he laid under my blanket with me and we watched an entire movie with him cuddled up in the crook of my arm. I couldn’t sleep the other night. Rather than waking Matt up, I just got up and came to lie on the couch with Chowder. After all, it’s not like he has responsibilities that mean he has to get up in the morning, so he was totally fine with my unexpected 3am company on the couch.

Chowder, like Tiger before him, fills a hole in my heart. I’m aware that cats aren’t the best idea for people with lung disease, since they can exacerbate it, but you know what? I don’t care. I take drugs that are bad for me because the possible reward outweighs the risk; Chowder at least makes me feel noticeably better. Every day I spend at work, I find myself looking forward to coming home to him. He makes me better in a way no medication ever will. Maybe he’s ultimately kinda bad for me, but then again so is lung disease, and I’m keeping that too.

Tiger was a dark cat. Mostly brown, with black along his spine; he also spent my darkest days with me. He held out long enough to make it through the most stressful part of my diagnosis, for which I am forever grateful. Dark cat for dark days? It seems silly, but also strangely appropriate. Chowder is white, with tinges of orange on his face and ears. So by the same logic, he’s the light after the darkness; he represents all my good days and the good things yet to come.

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Partners in crime?

So I had this thought a few months ago and it’s just stuck with me and I keep coming back to it, over and over again, day after day. It’s not about lung disease, or not explicitly, but it’s definitely been influenced by it. The thing I’m stuck on is so simple and so complex and so personal and so universal, all at once: how do you describe what it means to be a best friend? What do you even say about it? How do you earn that honor? I’ve googled it, scrolled through endless results, just looking for other people’s takes on it, but I just find I’m never satisfied. I’ve asked the people around me, but I can’t find the thing that I want to read or hear, to legitimize my own feelings about it. But then it occurred to me, can’t I just put it out there myself?

I already said that lung disease is the loneliest place I’ve ever lived, and I stand by that. I’ve made exactly one friend who can truly share this journey with me, and she lives 1600 miles away, in her own isolation island with pulmonary fibrosis. We found each other through happenstance on Instagram, when she commented on a photo I posted about my (at the time) new adventures with oxygen. She was new to it, too, and is also absurdly young to be dealing with interstitial lung disease. Our timelines are also eerily similar (we initially got sick within a month of each other, way back in 2014), and we have endless other similarities, even superficially: we’re the same height; we both have dark hair and glasses; these days we even weigh about the same, and have joked about trading clothes if only we were closer together.

This friendship is the one thing that I am absolutely sure I never would have found had it not been for interstitial lung disease, and it is the one thing I am grateful that my garbage lungs have given me. I will begrudgingly give pulmonary fibrosis credit for bringing this one wonderful thing into my life; everything else, I’m going to chalk up to something else because I refuse to get all Stockholm Syndrome with this disease. Neither of us should be here, but we are anyway, so I’m grateful that we’re here together.

I don’t think lung disease gave me some magical perspective or ability to see things I otherwise would not have seen, but I do think it changed where I’m looking from, particularly when it comes to things like friendship. I don’t think I value different things, I think I just value the same things, but more. So, what is a best friend? Well, it’s all kinds of things; it doesn’t have a simple answer… ironically, just like interstitial lung disease.

It’s the first person you think of when you have news to share, good or bad; it’s the person who doesn’t exacerbate your phone anxiety, whose calls you actually look forward to seeing pop up on your screen even though you generally hate talking on the phone; it’s the person you’ll call or text for the smallest, silliest thing but also for the literally life-changing things. The person who will laugh with you (and at you) when something embarrassing happens, because there’s simply no question of not telling them. It’s the person who you makes you laugh when you’re sad and whose sadness makes your heart ache as if it were your own. They’ll bring out the best in you and will also definitely get to see the worst in you, because somehow, miraculously, you’ve developed this astounding level of trust with them and even if you don’t quite understand it, it’s unquestionably there.

They act as your confessional and sounding board and take a genuine interest in all of it; they remember birthdays and anniversaries and doctor’s appointments and your increasingly ridiculous pill schedule. You’re delighted to see them when you’re together, and you miss them tremendously when they’re far away; you give them silly presents because sometimes they just need a jar of this one really delicious spaghetti sauce, or a pair of socks you saw at Target, or a fridge magnet that made you think of them because there are reminders literally everywhere of this person who’s come into your life and made it so much better. In my case in particular, they’ll never ask you to lie about how you’re feeling – if they’re asking, they’re asking for real and they know it means the answer might not always be good. They’re not just looking for the good answers; they want the real answers, because they know you and they love you and neither of your hearts would be whole without the other.

Don’t be a downer!

It’s Monday and I am tired. I went to work, I did my job, I did my best, I functioned for an entire workday like a normal person. And, I know, no big deal – so did everyone else I work with. I know I’m not special. Nobody wants to go to work on Monday but we do it because we’re adults and that’s what we have to do. Logically I know this. But sometimes I think about it and I wonder, “was I always this tired?” I told my friend who sits next to me in the office today, maybe an hour before we got off work, that I felt like I was melting into my chair. There is no better description. Just like my body was dissolving into the chair and the only reason I was upright was due to its structure, not my own.

I can’t describe any better than that, what it’s like to just have to force yourself to keep moving. So I was melting, but I still had to finish my day. Walk out of the building and to my car. Drive home. I felt like I was going to pass out the entire time. I got home and just fell into the couch, fully dressed, so tired I could barely move. This isn’t new, it isn’t different; this is what it’s like the majority of the time for me. This is day one of five.

I get why people with chronic illness tend to get depressed. Because it is depressing to feel like that. To have to use every last bit of your mental and physical energy to do things that will keep you alive but bring you zero enjoyment. Being “ambitious” for me looks a lot different now than it did ten years ago, or even five years ago. Now it means making it to work for the whole day every day for an entire pay period! It happens like twice a year and I hate that. At some point, I started thinking about work with these goals of like, “if you can just make it x more days, you’ll have made it a whole week!” It’s something to aspire to, even if it is the most basic thing that everyone in the world manages to do. And I often don’t manage it, and it’s disappointing. But I did make it through today, this one day, even though it took everything I had in me.

There’s no point in getting into whether or not it’s worth it (spoiler: I can almost guarantee that it’s not). It’s not a choice. Being sick is like double, triple, exponential punishment: I go to work, but not as much as I should, so I make less money than I used to. But I also have all these new, extra-fun expenses that go with lung disease. Oxygen is not cheap. Free for the rest of you who can absorb enough from ambient air; me, for my extra, I have to pay for it. Without the insurance that I have through my job, I’d have to pay even more. And then there is, like I said, the physical and emotional cost.

The imperative not to be a downer is so, so strong. I get asked multiple times, every day, how I’m feeling. I know it comes from a place of caring and of love and I do genuinely appreciate that people around me are concerned. At the same time, though, I’m not unaware of their hope that I’ll say I’m feeling good, or better than I was, or that overall there’s been improvement. So I also lie a lot, not out of malice or disregard for the care, but because a lot of times I don’t have it in me to be the one who crushes someone’s hope like that. Believe me, I know that if you’re asking, I know that you’re hoping I have good news for you. But some days I just don’t. I don’t want to be that source of sadness for anyone, and I don’t want to be the one who has to argue with someone else’s denial about what’s going on with me. I have my own to deal with.

Enough

Times are dark. Dark and precarious. Some days more than others, I feel like I walk a very fine line between two very distinct lives: the one I want to have, where I function well and am productive and don’t feel consumed by lung disease, and the one where things are a little more realistic – lung disease is there, I do what I can, I cling to normalcy and happiness and whatever else I can. I’m really stuck right now on the concept of “enough” and trying to figure out where it fits into my life, how I fit into it. So many days, I feel like I don’t do enough, I don’t try hard enough, I am not enough. Those are the times I want to wipe my memory of what it was like “before,” because if only I didn’t have that comparison, maybe it wouldn’t be so painful now.

There is an eternal feeling of needing to compensate for what and who I am now, as if I am not the same person I was before; just like my heart compensates for my lungs by beating a little faster (or a lot faster, some days), I want to compensate for everything I can no longer do as much or as well. I try to hug everyone tighter, to tell them I love them more often, to remind them more often of their greatness and their value, to work harder at my job, to be there for friends and family and even my employer as much as I can; I try to be the best version of myself at all possible times because I know that even that best version is diminished, lessened, dimmed, whatever, because it’s not what could have been. Logical brain knows that this is not productive, and yet it’s the trap I most consistently fall into. I mean, here we are.

I read The Goldfinch this week, and there were moments where I very clearly saw myself reflected in Theo Decker. Donna Tartt and I both graduated from the same school (albeit many years apart), so there was something particularly striking about having her, someone I don’t know but have this peripheral connection with, create such an accurate mirror for me. It felt, in those moments, like this understanding that could only have come from her and my shared experience – like whatever drew us both to Bennington was the same thing that made her able to articulate those thoughts of mine. I’ve talked about it before with friends from Bennington, and we all sort of agree that there is a strange, otherworldly connection that we all have, and it is most apparent when we are reunited after long periods of being out in “the real world” as we always called it. There is some common indescribable quality that drew us all there, and I saw it in Theo Decker; his abyss called to mine.

The loneliness that comes from all of it is overwhelming, as I’ve already said, but there was something comforting about those moments of connection (even with a fictional character). I don’t want to put too much stock in it, but maybe there is a reason I never read this book until now; maybe I needed it now, that balm over my sadness and whatever else. It resonated with me, at a time when not much else is, and reminded me that sometimes trying to be enough is just too much; all I can do is be.

 

“…life – whatever else it is – is short. That fate is cruel but maybe not random. That Nature (meaning Death) always wins but that doesn’t mean we have to bow and grovel to it. That maybe even if we’re not always so glad to be here, it’s our task to immerse ourselves anyway: wade straight through it, right through the cesspool, while keeping eyes and hearts open.” – The Goldfinch, Donna Tartt

The Trap

I had been married for less than two months when I went to my first appointment to figure out why I couldn’t breathe. We got married in December 2015; by the end of January 2016, I’d already been to the doctor twice, with no signs of improvement. I was always healthy until one day, I wasn’t. That transition lasted an eternity but also only a second. I don’t know precisely when it happened. I know where I am now, but I don’t know when I got here.

Yesterday, I went to my pulmonary function test. I went alone, not because I necessarily had to, but because sometimes all I can do is embrace the loneliness of the situation. I can sort of push it back, sometimes, if there’s not someone else there with me to remind me it’s there. In a waiting room full of strangers, of course I feel lonely – but with a familiar face there, too? That loneliness is more disconcerting, and sometimes I just don’t want to face it. So, I go alone, and it’s easier to attribute the creeping loneliness to the fact that there’s no expectation that I won’t feel alone.

Interstitial lung disease is the loneliest place I have ever lived. I wish I could say visited, but I live here now. I did nine weeks of pulmonary rehab last fall, twice a week (with some interruptions) from September through December. I don’t think I ever met another fibrosis patient. Everyone else had something different, not my specific condition. Some things that work for them will never work for me, because the disease is different. This is not to say I didn’t appreciate the connections I made – when else have I ever been in a room full of other people who have constant shortness of breath, who use oxygen, who know enough to know our diseases aren’t the same?

I can’t ignore that, but it’s also not the world I live in on a daily basis. In that group I was the outlier for the type of lung disease I had; in my life, I’m the outlier just because I have lung disease. I joke sometimes about living on Isolation Island, but it’s one of those jokes that has a lot of uncomfortable truth behind it. I am super sensitive to it; I am super sensitive to a lot of things these days (not even counting things like perfume and cigarette smoke and cleaning supplies).

The biggest sensitivity comes from this fear, this feeling, that I have unfairly trapped everyone in my life in this swirling mess that is interstitial lung disease. Sure, I’m the one with the physical scar tissue, but they’re the ones with everything else: with me when I’m sick, or tired, or going to an appointment, or coughing until I cry, or crying because I resent that I cough. They all cut me so much slack. Everyone I love most in the world is doing the unthinkable for me, and I feel so undeserving. They make excuses for me and for why I’m not the person I want to be, not the person I should be, not the person they all deserve.

I had been married for nine months when they finally called it interstitial lung disease. Nobody gets married and expects that their life will immediately turn into a medical nightmare, through no fault of their own. I feel unbelievable guilt for the fact that as soon as I was legally his problem, I gained some serious problems; and I feel unbelievable gratitude that he is still here. I can’t articulate what it means to have someone stick by me through this, knowing that it’s forever, knowing that I’ll never be like I was before.

I often wish, these days, that people could have known me “before.” But at this point, not a lot did – other than family and a few of my oldest coworkers, nobody that sees me on a daily basis knew me before Isolation Island. I felt so much more vibrant and fun and exciting, before – or maybe it’s only now in retrospect that I see that I was those things. It breaks my heart that my favorite people in the world won’t ever get to see that person again, or even meet her for the first time if they never got to before.

That’s the trap: the false promise that there is a way back, that there is hope to find that person again, that my best friends and my family will see that best version of me again. When I started this adventure, the promise of the way back was what kept me going; now that I know it doesn’t exist, it all feels kind of aimless. I go in a direction, but does it even matter which? Nowhere will take me back.

It feels like I promised everyone, “Just a little bit longer and then I swear we’ll be done with this.” But here we are: it’s not done and it’s not ending, and I can’t even tell them anymore that it will end. Nothing bothers me like knowing I misled them – unknowingly, definitely, but a tiny voice inside wonders, “would they have followed had they known?” And whatever the answer, it’s the wonder that kills me; the idea that not only did I fall into the trap, but I took them with me.

PFT

I used to be terrified of going to the doctor. Everything about it made me uncomfortable – the exposure, the questions, just everything. It’s almost comical to me now, the dread I used to have about going in, for anything. The anxiety stuck with me for a long time, even long into the seemingly-endless series of appointments that led to where I am now, to being officially diagnosed with interstitial lung disease. For the first half of 2016, I had multiple appointments a month; sometimes multiple appointments a week. And they were some of the most absolutely traumatic experiences of my life, but for reasons that were unexpected. Like, things that should have been routine were not. I learned that I have tiny veins, so starting an IV on me is a nightmare – especially if I’ve had to fast beforehand. I would go to appointments feeling nervous about one thing and then some other thing, like the fact that nurse after nurse couldn’t find a vein to start an IV, would overshadow everything that I’d felt looming about the appointment beforehand.

At some point, though, I stopped hating going to the doctor. Or at least, I stopped hating it for the reasons I hated it when I was a child. It became so routine that it was no longer that feeling of unknown that I’d always experienced when I was younger. Now that I was going in all the time, office staff would start to get to know me – they would be excited when I could schedule an appointment further than two weeks out, because it meant that they felt confident I wouldn’t get dramatically worse in the interim. I remember one particular receptionist at my pulmonologist’s office would always light up when I would walk in. Of course she remembered me: I was always the youngest person in there by probably 30 years, and I was in all the time. The staff in the interstitial lung disease clinic where I go now knows me, too, because I’m also the youngest patient in that clinic – a true curiosity! (I’m kidding.)

So I don’t have the anxiety about going in, anymore. Not the way that I used to, and, ironically, not now that I have so much more really to be anxious about. I certainly don’t love it, but there is sometimes a certain comfort to seeing the clinic staff and going to the familiar places and having something to expect. It’s the smallest bit of stability in something that is otherwise very unstable, so I’m clinging to it. Tomorrow I have a pulmonary function test, which is another of my “new normal” things I get to do a couple of times a year. Unless you’ve done one, and done one with diseased lungs, nothing I say is going to accurately describe how much fun it is not. Pulmonary function test; PFT, pulmonary fuck this. But that’s tomorrow, and I’m not anxious.

A constant state of crisis

When I got sick, I didn’t think it was going to be a “rest-of-my-life” kind of thing. I thought I had a cold and that when I finally got over it, that would be the end of it. Everything would go back to normal; I wouldn’t cough anymore; the shortness of breath would be gone. I probably wouldn’t even remember it.

As it turns out, none of that was the case. Three and a half years later, I’m still sick, ever since I got that cold in October 2014. I still cough, I still have shortness of breath, and I definitely remember. The words “interstitial lung disease” meant absolutely nothing to me until late 2016, when my “whatever” got its name, and honestly, they still don’t mean much. I mean, they do and they don’t. I feel like I have this vague memory of someone saying to me, back when this first became concrete, “well, it’s kind of hard to define… but what we do know is, you’ve got it.” And I guess that’s really all that matters.

So here I am. I was 28 then, when they told me that’s what it was; I’m 30 now, and my lungs are slowly thickening and turning to scar tissue. The cause is unknown; there’s no one standard treatment and no cure; I’m half as old as the people who are usually diagnosed with fibrotic lung disease. They can try different treatments, and they have been (oh, believe me, they have), but it’s still sort of all up in the air. I’m basically at the mercy of the doctors’ educated guesswork and my own body’s responses to their guesses, and nobody knows for sure what those responses are going to look like.

I live in this weird constant state of crisis. I wake up every day and know something is not right, but I also know there is nothing I can do, right at that moment when I wake up and feel the wrongness. It’s just there, and it’s been there, and it will probably always be there. Some days it bothers me more than others – physically and mentally, and sometimes those two things coincide, but sometimes they don’t. The wrongness is a part of me and so is the crisis. They’re carving out spaces in my body and my mind and my life and I’m learning, if not to balance them, then to deal with them. So I guess that’s why I’m here: another way to keep them from consuming me, and to process them as they come.