Normalizing Illness is as Hard as it Sounds
In 2016, our household received a permanent visitor. It’s not human. It’s hard to call it a resident. It doesn’t have a name. It’s not my dog.
It took us a while to see it, but the visitor had probably been there for a while. It didn’t make itself known, show us its true colors, until June of 2015 when my husband started choking on nothing. We had a party that night to celebrate the small wedding ceremony we had in October. After the 75 or so friends spilled out of our house and into the night, the party ended, and we started to settle into bed. Visiting friends, all of them in town for the occasion, took up their various spots on the fold out sofa and inflatable mattresses.
My husband, only newly so, lay down in our bed. Seconds later, or what felt like it, he shot up in bed. He’d been drinking (he was celebrating his groom status with dozens of his closest friends all night after all), but this was not related to that, not directly at least. This was something I’d never seen him do before. He was coughing, so I knew that he wasn’t strangled completely for air, but he couldn’t suck in a complete breath without dissolving into gags.
I pumped him full of the medications we had around the house: antihistamines, cough syrups, ibuprofen. Finally, the coughing subsided and he melted into an unsteady, and for sure drunken, sleep.
From the foldout sofa (we lived in a studio loft) one of his nearest and dearest friends, a guitar player and lawyer from Portland, said:
“That was terrifying.”
He still has these coughing fits, and they are no less unsettling when they happen, but they are far less mysterious. It has a name now, the fourth member of our household: pulmonary fibrosis. We only learned its name recently, about a 1 1/2 years after the June 2015 coughing incident.
By then, we had moved to St. Louis to be closer to my family and to reduce our substantial cost of living. In July 2016, about two days before we pulled up stakes officially and left L.A. for good, we saw a pulmonologist at the USC Medical Center where he reviewed my husband’s CT scans and lung function tests. He said the word “sarcoidosis” to both of us, and our chests melted a little.
We’d seen other doctors before this. Their news had been much more grave. Sarcoidosis was, we already knew, one of the curable things. It was one of the less serious things. To us: this was brilliant, good news. Sparkly news. We floated out of that hospital and appointment. We were gliding together. We ate at my husband’s favorite L.A. taco stand. We sat with a sweet sense of relief that his serious “Something Wrong” had been downgraded to “Something Curable.”
That Doctor was Wrong
There’s no way to diagnose sarcoidosis without, at very least, a bronchoscopy, a non-invasive surgical, diagnostic procedure that snips tiny pieces of lung tissue for pathologic investigation. My husband had one in October 2016, in St. Louis, not three months after that LA doctor hinted at the possibility that his lung condition was of the “no big deal” variety. The surgeon who performed the bronchoscopy was already fairly certain that the L.A. doctor was off the mark.
“We’ll do the procedure just to be sure,” he said, “but I don’t think it’s sarcoid.”
He was right. It wasn’t. It was the other thing, the scary thing, the permanent thing. It had been confirmed. This disease was a resident: of the permanent variety.
Pulmonary Fibrosis is untreatable. All diseases are mean, but the untreatable and incurable ones are the most persistent. My husband’s disease tore through his healthy lung tissue (and had probably been doing so for years before we found it), leaving nothing but fibrous scar tissue in its wake. His CT scans look like naked brambles.
One week to the day before Hillary Clinton lost her bid to become the 45th president of the United States, my husband and I were meeting with doctors who were evaluating him for a potential lung transplant. For many reasons: I will never, ever forget the poignancy, shock, pain, and terror of Fall 2016.
He uses oxygen now to walk down the hall. His spirits are remarkable and we’ve learned how to make space for the disease. It lives here, too. It takes up more room than any of us, including the dog. I’ve had to learn to give it room. I didn’t want to do that for what felt like a very, very long time.
I’ve lived through a lot of things: multiple parental divorces, my mother’s alcoholism, her death in 2006. I’ve astounded most close friends and relatives many times with my stubborn resilience. (If you knew me, it probably takes about 5 minutes to assume that I can handle anything.) Resilience, though, is sometimes a lie we tell ourselves about pain. I’m not bragging about mine. I’d like very much sometimes to not have been the child of an alcoholic. Addict parents force you to adopt a sort of bullshit armor. It’s not real, and it doesn’t function well in the real world, where most healthy people just don’t need you to solve all of their problems.
Still: that kind of coping makes you steely and unflappable. How can it not? I put my mother to bed often starting at the age of 11 or 12. It takes decades and therapy and patience and grace to learn the difference between real strength and bluster. I’m still learning.
Our fourth resident has made chop suey of what I thought was my strength. Everything that has come before it — my mother’s death, every breakup, every friend who died young, all other senseless tragedy that I’ve stumbled into — look silly. I mean every syllable of that.
A little more about the death of my mother: breast cancer. It spread to her brain. From May of until July of 2006, when she passed, I started every day by scraping that night’s turd from her adult diaper. I’d follow that up with a flush of her catheter to remove the sand-like urine (something that happens to all sedentary patients) that had collected in the tube overnight. She didn’t want to die in hospice, but hadn’t purchased any long-term care coverage. I enabled her to die peacefully at home because I was willing to deal with the poopy diapers, the tubes of clogged urine, and the zillions of other hard-as-fuck things that go with watching and caring for a dying person.
My husband’s lung disease, for too many reasons to list, is far more painful than any of that. It’s not fair to compare one to the other, but they are the hardest fucking things that I’ve ever gone through so they ended up on the same plate. It was hard, at first (I’m saying this a year into the diagnosis) not to do a constant comparison, like these two awful things sat on opposite plates of a balancing scale. It’s how we make sense of things, right? It’s a dark form of perspective, and it’s one in which I hope most people my age never have to engage.
Normalizing a disease is a motherfucker of a bastard of a monster of a war of a task. If you’ve never gone through it: go bathe yourself in a few moments of pure, unbridled gratitude. If you have: I’m sorry. I know you know and I see you. I know how at once humbling and terrifying this is. I’m sorry if it’s your disease. I’m sorry if it’s someone who is close to you, whether that’s a spouse, a parent, a sibling, or, probably the worst of them all, a child.
I’m trying not to let it keep me, or us, prisoner. It’s easy to feel hemmed in all the time. It wants all the control, and I’m learning, every day, how to force its hand. It’s already taken over my husband’s lungs. We’re fighting, and it’s exhausting by the way, not to let it take over our lives, too.
I love my new home. I love my new/old city. I was born and raised in St. Louis until I was 14, so it feels like home even though I was away for over 30 years. We found a home we love in a neighborhood that feels like we should have been here years ago. I dreamed when we decided to leave expensive, expensive, expensive L.A. (before the reality of what was living inside my husband hit us) of us having a little more cash flow, of a simpler life in a cheaper city, but one still full of remarkably good food and places to sit and sip something, of sitting in those places sipping things together, walking through the Botanical Gardens and exhibits at The Pulitzer together. We love taking walks. We are taking walks people, and we live across the street from a lush, gorgeous park now where I mostly walk alone.
Not three blocks, in Tower Grove, sits a modern barbecue bistro. It has a patio tucked underneath shade trees. It’s got a great wine and bourbon menu. We really like it. It’s the kind of place I dreamed we’d trot to on foot in our midwestern walkable neighborhood when we put our condo up for sale in L.A. We had dinner there last week: three blocks away, and we had to drive there.
I do all kinds of magical thinking in moments like that, and some of it is perfectly reasonable, and full of solid perspective: “At least,” I said to myself when we made the two minute drive that my husband is was too wiped out to walk to that evening, “we have a good car. We have enough money to go out to dinner.” You get it. If you’ve been here, or ever been forced to live through a few months or years of managing this brand of despair, you understand this kind of magical thinking. Eventually, you find a switch that forces you to abandon pity and find acceptance. It’s how you cope. It’s how you stay in the moment.
There is a huge mountain that sits in between grief and self-pity. It’s not easy to cross and the process is always disorienting. That’s as apt a metaphor as I can name, but think of it like anything that’s impossible to traverse: a jungles, a fire, a battlefield, the sea. Right now, measuring the difference between those two piteous states is my battlefield: deciding when it’s okay to sag into grief, to let it creep out in spasms of sobs or submit to its weight and stay in bed with Netflix, a book, or a nap; or (and this is happening more and more now) to put on some shoes, probably a bra (I work from home), and just drive to the damned neighborhood restaurant, even though driving does mean a kind of surrender.
Winning, though, and resilience looks like this: accepting that you have to drive to the damned restaurant. Winning means you don’t take a lot of time to think about what it means to drive less than an eighth of a mile. Slowly, I’m learning how to do this.
I’m learning how to cope with lung disease.
Today is the 4th of July, and it’s nice outside. Were he well, we would have already walked the dog in the park this morning. We would have gone out for breakfast, probably, or planned a barbecue on our patio (we don’t have a grill because we’re concerned about smoke and its proximity to my husband’s shredded lung tissue). For sure, we’d have a fireworks spot picked. We’re not doing any of that. We’re doing what we do a lot of: staying home, eating food I cook, watching good T.V.
Today, he’s doing a lot of extra napping because he woke up too early this a.m. and couldn’t fall back to sleep. Typically, if he sleeps badly, he has a rough day. He just needs to take it easy and can’t push it. Pushing it for him means that his lungs have an even harder time grabbing oxygen from the air and pushing it to his blood (aka, their primary function).
Unless, or until, the doctors decide he needs new lungs, this is how we’ll live for the rest of our lives. He probably won’t die from this disease. He may need a transplant eventually. A transplant brings with it a whole other set of complications and expensive drugs. It means living with a compromised immune system. On the plus side: it would also mean that his disease is permanently cured.
I work as a contractor and do a lot of freelance writing. It’s lucrative sometimes. I’ve done everything I can to keep us afloat financially. You may recall a certain recession a few years back. I lost a job in 2010 and did what I could to make some money for a couple years. I’m coming around the other side of it now, with the kind of skills that are more marketable. Because I was jobless for a while, and because I was scraping by, I missed out on some advancements in my field. I’m catching up now. It’s been a struggle. (I realize, of course, what a common story that is for many, many people.)
We have ACA insurance. I have another whole set of worries now because of that. I’ve written extensively about how positively the ACA impacted us gig economy, self-employed people. People have suggested, meaning to be helpful, that self-employment is part of the problem. People who have regular (or “real” as someone recently said) jobs, it’s been suggested to me, also have health insurance and maybe I should just do that. Just, you know, go get a full-time job, that pays well, with solid medical benefits that magically cover my husband, and his doctors, those same doctors who are monitoring his lung quality and potential need for a lung transplant.
I have a consulting job right now (a healthy retainer). I may like to work for this company permanently. I could look for another permanent job and hope that I don’t get laid off again in a couple of years. I could find a permanent job and use that as leverage with the current company (I really like the work I’m doing for them) in the hopes that they buckle and offer me a full-time job. That could also backfire and I could lose the most steady stream of solid income I’ve had since we moved.
I know this: if we lose our insurance, I’ll figure something out. I will not spend too much time feeling sorry for myself. I already know how not to do that, because my husband has a fucking disease already. I already know how to survive, and I’ll do what I have to.
It will be expensive and difficult. It will mean changing something, although I’m not quite sure what. In a life where I’ve come to know uncertainty in an entirely different way, I have to accept even more uncertainty. I pay acute attention to the news. When I see Mitch McConnell assuring a nation that he will persevere in his efforts to take away my and my husband’s health care, I feel his boot heel on my neck.
No matter what, I will make sure that my husband will have health care. He will not lose access to his doctors at Barnes (one of the best pulmonary centers in the country). I will probably have to fight desperately to find a job with benefits, even if it means taking a substantial pay cut and moving away from my growing network of contacts who are paying me well to write content and give them marketing advice.
I’m proud of what I’d do. My country has always held up self-employment and entrepreneurship as the gold-standard of work. I did it. I work for myself. I’ve always thought of that as nothing more than utterly American.
My question to McConnell (and the rest of the Senate GOP): why are you making it so unthinkably difficult to be an entrepreneur in America? Do they even know how much their vengeance is costing the self-employed? Is it that hard to measure how many of us self-employed people also have a sick person they care for, for whom they are utterly financially responsible? (Also: no. It’s not hard.)
What are the numbers on self-employed parents with sick children? There have to be millions of us, successfully self-employed folks who have sick spouses, sick daughters, and sick sons. Have they studied this? Do they understand the potential decimation this will mean financially to those millions of Americans? Worse: do they know and just simply not care? Aren’t Republicans always crowing about being a self-starter, about bootstraps and, the most coveted of all things, small businesses?
I met a mom whose tiny daughter has a genetic disorder. Her doctor found experimental shots that are helping her muscular development. Their cost? $250,000 a pop. I met another woman who owns a small business. She has virulent, awful, aggressive cancer. I heard her say this to an aide of Senator Roy Blunt, also a huge fan of ACA repeal: “I may have to choose between staying alive or bankrupting my children’s financial future.”
Normalizing illness is hard enough. Making all this room for it, carrying it around, normalizing the sound of oxygen tanks burping air into my husband’s nose, accepting the permanence of his disease is quite enough punishment. It’s hard enough.
As long as I’m making enough money to support two people, as long as I’m contributing to my local economy, as long as I pay for our current healthcare coverage which, among other things, covers the cost of his $97,000/year medication, I shouldn’t be forced to accept anything else.
That day may be coming, though. There may be a day in the not too distant future where the coverage we have is gone and I have to work my ass off to do something else, even though I’m already working my ass off to do what I’m doing now. It’s impossible not to live in constant terror of these people.
I’ve been through a lot. I never dreamed I’d be going through this. Neither did my husband. It’s blindingly hard to accept that just over two dozen Republicans in the Senate are one signature away from destroying a life that already takes this much effort. I’m still waiting for a glimmer of compassion from any of them that acknowledges just how senselessly hard this will make life for millions of us.