"Threads of Ugliness"
I am screaming. I am kneeling on the floor of my kitchen, the piles of dirty dishes I have been unable to clean spilling over the sides of the sink and onto the counters. The crusted remnants of dinners I could not cook myself stain the dishes, stain my soul. I am screaming, sobbing, hands threaded into my hair. The strands of greasy hair I have been unable to wash. Pulling. Pulling to withdraw the despair. The hopelessness. I can feel the strands of ugliness, black threads pulsing with anger, wound sinuously through my mind. If only I can pull hard enough.
“I’m trapped!” I shriek. “I’m trapped!” I scream this at my husband. He tries to understand but cannot. It is impossible for him. For anyone. I am collapsed. Weak. Unworthy. My children are here. They see their mother, a shell. An empty pod, stripped of fruit, of value. A finger has plunged into me, ripping away everything good inside until I am left as a husk. Deep inside, in a buried place so far I cannot reach it, I realize there is still something left, some fragment of the person who once was me. This shred of me is crying, too. Sobbing in shame that my children should see my weakness. Sobbing in horror that I should be causing them this kind of fear. What damage I must be inflicting upon them. This shred is impotent. It cannot reach the surface to help.
He has me by the shoulders. He yells, not in anger, but in fear. “You need to talk to someone. And you need to do it now.” That fragment of myself hears him through the dense fog of screaming in my mind. The fog is black--black as the threads of ugliness--and it fills every corner of me. Insidious and consuming, it has swallowed me entirely. The fragment understands him, knows he is right. But it is trapped as well.
The world fractures.
I wake at night. Panic consumes me. I do not remember the dreams, do not remember from what nightmare I have ripped myself, dragging my reluctant mind into wakefulness. Countless times, countless nights I wake, bathed in acrid sweat, heart clawing at the walls of my chest. If only I could remember. Nothing can be worse than not knowing.
I am wrong.
The car is red--maroon like the car my father drove when I was twelve--and stalled at the edge of the highway. The old, narrow pillars frame the interior. I stand, alone and empty, in the highway. The highway is as empty as I am. Inside the car are the people, their eyes black voids, their flesh grey and rotting, melting, dripping from their faces. They press against the windows, pound their fists, their gaping black mouths crying for deliverance.
The quietness which follows is a bliss. I do not think at all. My brain is silenced. I am plagued no more. The black fog has been overtaken by a fuzzy nothingness.
“I’m coming with you,” my husband says.
He drives. I sit in the passenger seat in silence.
“I feel better when I take the Ativan,” I tell my doctor.
“I watch you with the kids,” my husband says. “You are like a zombie.”
“No, you’re not.”
New drugs, new help. Four appointments every week. I negotiate my recovery one day at a time. I cannot work. I cannot even summon the energy necessary to rouse myself from my chair and lift that stray piece of paper which has fallen to the floor. The dark fog has returned as the fuzzy nothingness faded, and I come to realize that it will be there always. I cannot imagine a future in which life is better. I have lost all hope. I cling to my children--my reason to live. I cannot leave them without a mother. There are moments when I look at them and my breath catches in my chest in a sharp, painful stab. The pain shoots across my chest and radiates to the tips of my fingers with the speed and raw power of a lightning bolt. I cannot believe that I made something so perfect.
The dark fog does not leave me. It never will, but I learn to live with it. I learn to contain the despair, and slowly I coax that fragment of myself back into the light. It is damaged and reluctant, fearing that it will be destroyed if it emerges from its hiding place in the recesses of my mind.
I search for answers. Why have both my mind and my body turned on me? Answers do not come, but I am an ox. I am driven, determined, relentless, and I have found my strength. I refuse to concede.
My back has collapsed, it is now fused solid, unforgiving and ramrod straight. The foreign bite of metal teeth surround my spine, now and forever, both a support and a burden. The doctors tell me they do not understand why I won’t stop bleeding as I watch them hang yet another bag. Purple-red and viscous, the blood slips into my veins. I can hardly see it through the haze of pain. Pain so intense I could never have imagined. How was I to know that morphine was as effective as water in my crippled body? I suffer through.
A pain in my gut wakes me early in the morning. I shift and moan, toss. I go to work when the sun rises, fingers of yellow warmth reaching between the strong and stately trees from the distant horizon. They bring me no comfort. In my office, the screen stares at me with its harsh light. I place my shaking hands on the keyboard, willing them to type, but the pain grows. I clutch with both hands, squeezing the flesh of my abdomen between my fingers and palms. There is no relief. "I’m sorry, I have to go."
“I need you to take me to the clinic when it opens,” I tell my husband. Then, only minutes later. “No, I need to go to the ER. Right now.”
Another surgery to remove the stones filling my kidneys and ureters. Then more pain, worse. This time the ER doctor sends me home empty-handed. A drug-seeker to be sure. But I am vindicated the next day when I am admitted to the hospital with an infection the prophylactics could not fight.
There are more surgeries, more questions. Why do my feet collapse under the weight of my body? Why do I bruise at a touch? Why do my kneecaps dislocate hundreds of times every day? Fingernails become inflamed and fall off. My hair begins to fall out. I hemorrhage for three weeks out of four, month after month, until my iron levels drop dangerously low. Six weeks in the infusion center next to cancer patients--some old and near the ends of their lives, some still children, some at any stage in between--teach me that things are not so bad. My joints everywhere are loose and unstable. And then begins the pain. It grows every day until it becomes consuming. This pain emanates from the centers of my bones, crushing my limbs from the inside out.This crushing pain is wearing. Between this and the pain of the bones of my joints grating against one another, I am becoming more and more limited. My life is not what I imagined.
I begin to collect letters as I insist upon answers. BRIC, VWD, ICP, SS, OCD. “How can one person have this many things?” I demand.
“You sound angry,” a smug therapist suggests. She is condescending and as subtle as a sledgehammer.
“I am angry.”
I fire her.
We are missing something. There must be an answer.
In the end, years pass before an answer is forthcoming. I add to the alphabet soup which has come to define me, but finally I find one set of letters which will swallow the others. EDS: Ehlers-Danlos Syndrome. It is genetic. My collagen is not formed correctly, and there is no cure. Collagen, the glue which is supposed to hold my body together, has failed me. Suddenly everything is explained--even mysteries I had not thought to question: the tilt to my uterus which so concerned my obstetrician, the raging, tearing heartburn which has destroyed my voice, even the consuming, crippling depression and anxiety.
That black fog of depression remains with me. I understand that it will always be there, lurking. But no longer does it consume my mind.No longer am I reduced to a fragment, huddling in fear of being extinguished. I come to know that I have not damaged my children. They do not even remember that day when Mommy splintered and fell to the floor, screaming. Even at my worst, that fragment of myself was sneaky.It crept through that dark, consuming fog and held my children, comforted, nurtured. These things I cannot remember from that dark time, but it is all they know. It is all that matters.
It is surprising, perhaps, that the diagnosis of an incurable disease should bring me comfort. I will spend every day of my life slowly but inexorably falling apart. Yet the new letters offer me an answer. They tell me that what I experience is real. It is not in my head. I continue on each day, managing the pain with nerve blockers, anti-inflammatories, steroids. I take drugs for heartburn and depression, supplements for iron deficiency and the osteopenia I have already developed at age thirty-six. Injections in my joints, more surgeries in my future. This will be my life. My family’s genetic predisposition to longevity suggests that I will live for fifty or even sixty more years, decomposing even before I die. Eventually this disability will take away not only my mobility but my passions and my livelihood. The worst thing possible, I have learned that two of my three children have inherited my disease. The threads of ugliness threaten me, but I will fight them for as long as I can.
Hilary Boyer is a mother of three warrior babies. She has been diagnosed (among others) with major severe depression, anxiety, obsessive compulsive disorder, Von Willebrand Disease, Intrahepatic Cholestasis of Pregnancy, and the umbrella disease, Ehlers-Danlos Syndrome. She is Vice-President of the charity ICP Care, which helps raise awareness and reduce stillbirths associated with Intrahepatic Cholestasis of Pregnancy. In her spare time she is a professional dog trainer, frustrated by her body slowly destroying her ability to compete.