It’s the third time I’ve thought about dying today. When my car passes a big, solid, moss-covered tree, I wonder with cool detachment what it would feel like to veer off of the road and slam my car as hard as I can into it. Will my kids be okay without me? Will my husband? Will my family forgive me or will they spend decades missing me, hating me, sitting across from therapists who try to walk them through the moment their wife and mother made an irrevocable choice. I’ve had these thoughts for a year, now, and I know they aren’t normal or healthy, but I don’t want to see a psychologist because I don’t want to add another doctor to my list.
It’s late in the day—a sunny Friday afternoon in April and I’m exhausted. Not just tired, but bone-achingly weary. I can feel every cell in my body begging me to lie down in whatever dark corner I can find but I know I can’t give in. Too many people depend on me to function–to smile through the daily weight of pain. Even though each rise and fall of my chest takes an effort I’m afraid I no longer have, I need to drive a change of clothes to the house where my 10 year-old son is having a sleepover with his best friend.
I have every intention of picking through our mountain of dirty laundry to wash a load of clothes but I can barely lift my arms. I want my son to have a clean pair of jeans to warm his skinny legs the next day, but I end up shoving crumpled khaki shorts and an old Star Wars t-shirt into his backpack instead. I pray the new warm weather will hold out so my son’s legs won’t freeze when he’s wrestling around with his friend in his backyard. No matter how many times I tell myself that he will be okay, I feel the weight of my mistake like an anvil on my chest. I am ashamed of what fills the backpack—how the absence of long pants and long sleeves proves that I’m a bad mother.
It’s 2:45 in the afternoon and my hair is wet from a late shower, piled high on top of my head in a sloppy bun. I’m wearing light but full make-up, and the speckled, slightly dark clumps of giraffe-like age spots that dot the edges of my forehead and left cheekbone are covered. I’m 36 and stay out of the sun, but my skin is changing from the strong medications I take and I look at a new face in the mirror now. Every time I step outside of the house, or when my husband’s eyes wander to the donut-shaped hernia that dots my bloated mid-section, I feel less than human and I wonder how I’ve fallen so hard in five years.
I don’t remember what it’s like to feel normal. Who was I before the surgeries and IVs? Before Crohn’s disease came to define me?
Just 30 minutes before, I’d sat huddled in the bathroom corner, my phone shaking in my hands as I dialed my husband’s number. I’d been on the computer since seven o’clock that morning, working at home, packing lunches for my daughter and son and getting both off to school on time while fighting the urge to throw up in between bouts of painful diarrhea due to my “moderate-to-severe” Crohn’s disease. “Moderate-to-severe” was my gastroenterologist’s term and not mine. If you asked me to quantify the severity of my disease, I would drop the “moderate” in favor of “life-altering”. Or, in moments when I considered slamming my car into the solid wall of a tree, or driving off of a highway overpass into the chasm of the clover-filled ditch below, “life-ending”.
I hung up on my husband before the call even started—before his phone could ring. How many times has he been forced to listen to my complaints? How many times have I burdened him with my fears and described every scary ache and pain that he couldn’t fix? That he couldn’t feel? I knew it wasn’t fair to tell him about my new symptoms–the inexplicable itchiness and burning that was now setting my pale skin on fire, flaming through my body from the bones out, the skin on my forearms a mottled tomato-red.
I knew the burning had to do with Humira, adding to the drug-induced raw patches of skin that bled if I touched them and stung like infected, open wounds. I had a small patch of skin on the right side of my nose that was always dry and flaky and sometimes oozed a clear fluid, but I covered it carefully so it wasn’t noticeable to anyone but me. I clutched the silent phone and forced myself to stand up on shaky knees and I looked in the mirror and saw that my chest was cherry red and my face sickly yellow. I was so weak that I wanted to crawl into my bed and collapse face-down, but I had to get the backpack to my son, come home, work for three more hours, and help my daughter with homework when she stepped off of the bus.
I remember the day before and realize I crossed a line when I told my children that if anything ever happened to me, they should know that I was looking over them and would always be with them. That I was proud of them and loved them and to never forget that they were my greatest accomplishments. When my son’s eyes grew too big, I was quick to explain that nothing was going to happen, that I just wanted to tell them how much I loved them. But I know deep down inside that I can’t guarantee that I will be with them when they need me the most and my soul aches from that knowledge. It’s a constant presence, this future failure.
Like all IBD patients, I can’t count the times I’ve had doctors tell me how dangerous it is to have a suppressed immune system as they write the prescriptions to suppress my immune system. I can’t count the times I’ve listened to warnings from the makers of Remicade and Humira about deadly fungal infections, tuberculosis, and vague ‘lymphomas’ that walk behind me like tall, dark shadows. I’ve been told that any time someone with Crohn’s disease enters a hospital, they’re playing Russian roulette with steroids, sepsis, and C. diff.; and I’ve also been told that Crohn’s patients who are on narcotics to control their pain have a higher chance of “meeting a bad end”. But I don’t tell my children this because they’ve visited me too many times when I’ve been hospitalized. And they’ve watched me give myself shots every week and take pills every day. Instead, I tell them that I will be fine and that they will be fine and that everything is okay.
But my heavy arms barely work and the sunglasses are covering the hot sting of tired tears. I pass the tree trunk that makes me think of empty oblivion and I blast one of my favorite songs from the car stereo until I feel it echo and pulse inside of my sore skin. I hope it will make me want to sing until my throat aches—but it fine-tunes every negative feeling I have and amplifies it so I turn the volume down. I keep my mind carefully blank as I pull into the driveway of the squat, ranch brick house my son is spending the night in and I see the top of his blond head and I’m momentarily restored. I know that this is all that matters and he smiles at me, but looks weary, like I might snatch him back and ruin his sleepover, or worse, yet, kiss him in front of his best friend. Instead I give him his back-pack and tell him to wear his brown hoodie if he’s too cold in his I’m-a-bad-mom shorts. He nods and runs back inside while I talk to his best friend’s mother for a moment and I smile and tell her that her new house is gorgeous.
After I leave I’m filled with such a sense of accomplishment that it fills my chest until I stop at a red light, idly look down at my forearms and notice a field of small, hard bumps on the underside of each. They are flesh-colored, with a hint of yellow wax underneath and my heart skips a beat before starting again with a sickeningly slow thump. I know what the bumps are because I’ve seen them before—they’re eruptive xanthomas—and they appear when a person has very high—ungodly high—cholesterol.
I take a breath but it hits me anyway. I know that right at that moment, sitting in my car, trying to go about a normal day taking care of my children, my home, my husband, and my job, liquid fat is accumulating at such a high rate in my blood stream that it’s being forced to deposit under my skin. I know the new meds aren’t working, and that I’m at an extremely high risk for pancreatitis. I wonder what this collection of lipids is doing to my arteries and heart and I know I’m powerless to stop it. It’s just one more thing that makes me “other” than everyone else—overwhelmed, sick and alone.
At that moment, the sun is dulled and everything feels hopeless and fake. My body is falling apart and I’m convinced that my doctors will never figure out the combination of medicines needed to put it back together. I can’t smile. I can’t hope. As I drive back home, I take another look at the moss-covered tree.