So Hard to Say Goodbye: Hello Sunshine

Summer Soltice, 2014. The longest day in the longest year of my life. Looking outside at the rich, verdant trees on my block, full of birds singing and squirrels chirruping, you’d never believe that we had one of the worst winters in my country’s history (and the second-worst winter in my city’s history). You don’t know what cold is unless you’ve been up and ready for work at 4:30 am, waiting for a bus when it’s -19F. For the entire month of January our temperatures were below zero. At least one day a week that month, the whole city was shut down, and this city is known for never. Shutting. Down. Getting ready to go open the coffee shop, I would put on: underwear, long underwear and a moisture-wicking t-shirt (veteran cold-weather humbugs all know that cotton next to your skin can trap moisture, causing hypothermia), a thermal shirt, jeans, sweatpants over the jeans, a sweater over my thermal shirt, and hoodie over that. On top of that I’d wrestle on two pairs of wool socks under boots, gloves under my mittens, and a scarf and hat all wrapped up in my gigantic winter coat that went to my knees. All of this because I was waiting for the bus for five to ten minutes, and the news was reporting that being outside for longer than two minutes was dangerous.

This winter was hard on everyone, but it was particularly hard on my dad. It was during the first polar vortex that my family began to realize that something was seriously wrong with his breathing.

Dad’s winter started with a nasty fall. In mid-November I got a call from him at the coffee shop: never a good sign. When I asked him what was up, he told me he was in a cab on his way to the emergency room because he had fallen on concrete and landed square on his tailbone. Yes, he could walk, but it hurt very much. I left work and waited for him in the hospital while he was x-rayed and examined. Dad is in his mid-seventies, and a fall like this was always a top worry of mine, especially because he doesn’t drive and uses public transportation. My grandmother on my mother’s side, who is only a couple of years older than my dad, had broken her pelvis the previous winter, and after seeing what she went through I hoped against hope that he hadn’t broken anything. Turns out, he had badly bruised his tailbone, but nothing was broken. Thank the Lord! He said he fell because he lost his footing. To this day I wonder if he fell because he was short of breath. Dad walked very gingerly for the following month, but there was something different about it, something other than just watching where his feet were going, taking his time to prevent a fall.

Dad loves my coffee shop, and since his retirement his main social event has been visiting me during my shifts and proudly getting his VIP-status free cup of coffee. There are big, beautiful floor-to-ceiling windows wrapping around the shop, and when I stand at the espresso bar making drinks I can see him coming down the block. My father is hard-of-hearing and can read lips, so sometimes we start our conversation early before he comes into the store. It’s a secret moment I treasure. I mouth to him yes or no questions (“Do you want your coffee?”) or tell him things I can’t say out loud (“Having a shitty day. The drunk called in sick again.”) But I started to notice that he wasn’t looking up when he would come down the street. And then I noticed that there was a distinct shuffle in his step. And then I noticed that he was stopping every few steps and frowning at the ground. He was struggling to breathe.

At first we just thought it was the cold. Then he went to the doctor and was diagnosed with a viral lung infection. He’d feel better for a few days, and then feel sick again. This time he was diagnosed with a bacterial lung infection. He had two bouts of pneumonia, one bacterial that resisted three rounds of antibiotics, and one viral “walking pneumonia” that lasted for months. Well, I can tell you he wasn’t doing much walking. Dad was inside and immobile for most of the winter. We thought as the weather lightened up, so would his symptoms. But they didn’t. They got worse.

One crisp March saturday he came to the coffee shop, beet red and pouring sweat. The effort of walking the block and a half from the train station had exhausted him. He swallowed big gulps of air and shook his head. “It’s like nothing,” he gasped. “I’m so out of breath.” I touched his face, and it felt feverish. “I don’t think I can stay,” he said, and after promising me to make a doctor’s appointment he took a cab straight home.

After my shift, I picked up some soup and necessities for him and brought them to his apartment. It took him an abnormally long time to answer the door. Luckily, I have my own set of keys. He was standing up, his face completely grey. Getting up from his chair to the door was too much of a strain. He sat back down and struggled for air even with no movement at all, simply sitting. “This is scary,” he said. Oh, Poppa. You don’t have to tell me. We discussed what we should do: he had an appointment with his doctor, at the hospital, first thing in the morning. Should he go to the emergency room now? He told me he thought he would be fine overnight, and besides if he went to the hospital they would probably just hold him overnight until he saw his doctor in the morning anyway. After making him promise and pinky swear multiple times that if he felt like he couldn’t breathe he would call me or call an ambulance, I left him for the night. I called my older siblings and my twin to let them know what was going on, and my older sister (who I will call Cindy) offered to take him to the hospital for his appointment. I prayed all night long that he would make it through.

Before this whole process, I thought that you went to the doctor, they told you what was wrong, they gave you a treatment, you felt better. That was that. I was not prepared for how long things would take, or how the diagnosis would slip and flip over and change over the coming months. Dad was given oxygen therapy and had an oxygen unit was delivered to his apartment. First he was diagnosed with another damned run of pneumonia. Then with x-rays, that diagnosis changed to emphysema. Emphysema meds had little or no effect. The oxygen wasn’t enough. We started to worry that he had cancer. Time for a second opinion. More x-rays and tests were taken and deemed “inconclusive.” Time for a lung biopsy.

During this time of constant testing and worrying, I watched my father dramatically age. He had always been vainly proud of his wrinkle-free face, and would always ask people to guess his age. Despite being in his mid-seventies, people always guessed in the late-fifties range. He was always proud of how quickly he walked, how he managed his own comings and goings through our city’s complicated public transportation system, his vibrant and active social life. First he slowed down. Then he shrank. And then he wrinkled. His limbs slimmed from lack of use, despite chair exercises my sister and I encouraged him to do. His ruddy complexion turned into a gray one.

I’ve aged, too. During one of our many waiting room vigils, my twin (who I will call Lisa) sighed and mentioned that she had found her first few gray hairs. I went to the ladies’ room to check my own head and, sure enough, I found a few. Further examination showed that I also had dark bags forming under my eyes and a crease starting to set into my mouth from constant use of my “we’re going to get through this” face. This year we’ve all gotten much older.

In honesty, it’s been a while since we had reason left to smile. Hello sunshine, come into my life.

Enjoy your solstice.

S#@t People Say to Children of Sick Parents

Disclaimer: Of course, rarely do people mean actual malice or harm when they say these things to children of sick parents. Talking about someone’s illness can be awkward; people don’t want to be too rude or intrusive or a downer. However, there’s a right and wrong way to go about showing that you care, and sometimes the crap that comes out of people’s mouths is like nails on a chalkboard. Chances are, if you’re the child of a sick parent, you’ve heard these over and over and over. Or, if there’s someone in your life who is caring for an ill parent or family member, take note! You don’t want to be on this baddy list. Here, Sherlock will help you.

1.) Were they a smoker?

For some reason, in American culture, we can’t let go of our control of destiny. People want to believe that things happen for a reason, and those reasons are based on your decisions. This question is a blanket hiding the real question: Is it their fault that they are sick? There are many illnesses with this kind of stigma attached to them, including AIDS and lung cancer. Part of this stigma, I think, is the horror that healthy people have of being sick. They want to believe illness won’t come to them. Bad things happen to those who make poor decisions, right? …….Sometimes. It’s important to have compassion for an ill person, even if you believe that their illness is “their fault.” Trust me, if you think they brought it upon themselves, at some point they’ve probably had the same thought, and they are suffering hundred-fold. And their children don’t want to have to defend their parents to someone who is supposed to be a friend.

2.) Well, I’m sure they’ll be fine.

My dad has a terminal disease, you fucking moron. He will not be fine. I’d almost rather you just tell me you’re uncomfortable with the conversation than say this crap.

3.) Oh, they should drink this $3 bottled water or some other insane homeopathic bullshit remedy. It totally cures cancer! Maybe it would help your parent.

Bitch please. While I have a lot of respect for natural medicine, unless I have implied that I’m unhappy with my parent’s care, assume that we’re doing everything we can and we’re happy with the care they are receiving. Our family is already hemorrhaging money, I’m not going to spend $45 on your crap magical vitamin supplement. Globules of earth goo aren’t going to make my parent’s terminal illness go away. Stop.

4.) Oh, your parent is getting a diagnostic procedure done? Well, I certainly hope they don’t have _____. That disease is horrible. My uncle had it, and before he died you wouldn’t believe what he had to go through….

Spare me the details. Trust me, every night I’m awake and staring at the ceiling envisioning my parent’s suffering. My imagination doesn’t need any help.

5.) You mean you’re not just moving them somewhere? Or the reverse: You mean you’re just moving them out somewhere else?

Look, not everyone can afford state-of-the-art high end care for their parents. Not everyone can afford to let go of their job and have a parent move in for home care. If we lived in a perfect world I’d move my dad out to Arizona or somewhere else where the air is as dry as possible for his lungs. But then again, if we lived in a perfect world I’d also have free tickets to Bermuda every February, and my poor pops wouldn’t be sick in the first place. Don’t judge the care others are giving their parents. Most children of sick parents are constantly terrified that they aren’t doing enough, that they are somehow contributing to their parent’s decline.

You Have to Pay the Troll Toll

In the middle of my twenties I’ve watched the lives of my friends expand ever wider and wider, an endless smorgasbord of options and experiences: jobs, marriages, children, travel; memoirs written, PhDs granted, airline mileage points cashed in. But it’s during this time that I’m experiencing a kind of internal shrinking. When my father was diagnosed with a rare terminal lung disease and told he had 1-2 years to live, my world became very small. The mundane became incredibly important. Wild twenty-something fantasies–I’ll move to Italy! I’ll go back to painting school! I’ll join the Peace Corps!–were completely off the table, and not just for the present, but most likely forever. But most importantly, looming over the horizon was the loss of one of the most important people in my world. One of my best friends.

It’s bizarre to feel like you’re saying goodbye to someone who is right in front of you. And, right now, it feels like my father and I are saying goodbye to each other every day and all the time. It’s surreal to grieve for someone who is ailing but still alive. It’s even more surreal for them to be grieving, too, right there next to you. The first thing I mourned was the reality that he would be absent for moments and events in which I never once questioned that he would be present. In fact, my daydreams of those moments focused specifically on his joy. I can’t imagine my wedding day without him walking me down the aisle, or a poppa-daughter dance. Likewise I can’t imagine graduating without him cheering for me, bearing children without his ice-cream deliveries, raising babies without his gentle hand to guide me.

And all that morose, maudlin, lovey-stuff is very nice. I’d love to write paragraph after paragraph about how wonderful my father is and how much I will miss him (after all, that is true). Actually, I hope to spend a lot of time doing that here. But let’s get something straight: there are realities to having a sick loved one in your life that no one wants to talk about. I’m not talking about bedpans and injections. That’s the easy stuff. I’m talking about the acidic emotional troll inside of your chest that you wish would shut up. People talk about “the battle,” and talk about bravery, and talk about how precious these memories are. Swallow this big pill: the number one emotion gnawing at my stomach most days is indignant rage. And I wish I could say that I am angry that this is happening to my father, that he has to suffer daily with this disease. In fact, it would probably almost feel good, to be angry FOR him. But honestly, I’m fucking pissed that this is happening to ME. Absolutely selfishly, I wish this was happening to anyone but me. I wish this wasn’t my family. This isn’t what I wanted for my life. There are times when I’m even angry at my father for being sick in the first place. These are feelings so selfish and so nasty that I hesitated for months before divulging them to a therapist. The anger and injustice I feel borders on teenage self-righteousness. I don’t deserve this, I don’t want this, I didn’t ask for this. But when the bitterness rises in your throat, you swallow it down and keep knitting in the waiting room. When your friends look at you pitifully and say, “That must be really hard,” and then tell you about their wild party weekend, you resist the urge to smack them. Not because they are immature or thoughtless, but because you are seethingly jealous: you would give anything to be allowed to be immature. You want a tantrum. You want a hug. And then you want a cookie and a nap. Because if there’s one adjective that can describe you at just about any hour of the day, that adjective is “exhausted.”

My reality, as my father has gotten sicker and sicker, has been like the dawn of understanding one must undergo during an unplanned pregnancy. Despite your resolve to “make the best of it,” the sheer amount of tasks and the level of responsibility is overwhelming.

Everyone has a focal event in their lives, usually in their twenties, that is the turning point that changes a life forever: one acheives a dream; one chases a dream and realizes that the dream isn’t what they expected; or they chase the dream and have a big, glorious failure; a child is conceived; a love is found. A loved one is lost. There’s a rift that happens when you kiss childhood goodbye and trudge forward into adulthood. And you may think to yourself, “I’m twenty-two! I’m already an adult!” No, sweetheart, you’re not. If you’re still sleeping on a pile of your own laundry and eating Pop-Tarts for dinner, you are not an adult. These turning points are usually a weird mix of acheivement and ennui. With your engagement ring comes separating the whites and meal planning. With your diploma comes a monthly loan payment. Twenty-somethings get together and FREAK OUT about this, while everyone over thirty rolls their eyes and sighs, “Of course you need to fold your underwear before you put it away, you fucking child.”

Overnight, I became a different person with different priorities, and like most of my peers I absolutely positively did not want these priorities in my life, only there wasn’t any momentus sense of acheivement cushioning me into adulthood. And unlike my peers, my daily tasks are doubled or tripled: grocery shopping for my household and for my dad; siphoning away every single hour of vacation time I could squeeze from my service job so I could accompany Dad to the hospital; remembering to pick up medications; daily check-ins to make sure the old man hasn’t croaked. While the new mundanity that my friends are experiencing affirms their lives, the tedium of my life is like a slow parade towards my father’s death.

As much as I outwardly throw myself into the care of my father–an appointment rarely missed, not a toenail left unclipped, not a bus ride unplanned–I inwardly fight against every act, appalled at the injustice of it. After all, most people are twenty to thirty years older than I am before they have to cope with a dying parent. Every time I squeeze his hand at the doctor’s office and flash him an “everything-will-be-okay” smile, I steel myself inside against the onslaught of bitterness that threatens to spill out of my face. It just isn’t fair. Honestly, these feelings probably propel me forward with my father’s care, because I feel like I have to outwardly compensate for the visceral shittiness in my heart.

I expect to be sad, but one thing no one expects from me are the frequent bursts into tears. The Midwest Stoicism I grew up with wasn’t structurally built for the pressure of this. I hate these moments, because when I’m eating tacos with my boyfriend and suddenly crumble into tears I can no longer tell myself “sometimes I feel like a teenager,” or “I feel like I’m on the brink of emotional disaster.” Because there is no edge. You’re in it. And the emotional disaster is YOU.

When I put my head down and cried into my salsa verde (because that actually did happen), I was crying because I never realized until now just how integral my fathers’ existence was to the concept of my entire experience of the world. How simple. How childlike. Daddy exists, so I exist. Even separate from him, he is constantly present in my life. While I’m in the kitchen with my boyfriend chopping tomatoes and onions for our weekly anticipated taco night, there’s an awareness in the back of my head that he’s tucked up in his easy chair, hands clasped over his gigantic belly, snoring softly into his chest. When I realized that very soon that will not be true, it was like I felt reality slip and warp and slide like a viscous sludge underneath me. It was violent. So I cried.

Maybe I’m unfair to the troll in me. Maybe she’s not a troll, but a toddler: reactionary, confusing, whining, shamelessly selfish, but hurt. Not wanting to be put down. Not understanding why Daddy has to leave. Part of this experience is learning how to put on my own bandaid when I get a scrape. You’d think an “adult” my age would know that by now, but I only really became an adult a couple of months ago.