So Now What
The floors were littered with piles of clothing and trash. I bent down to scoop them up one by one and shove them into a series of large plastic trash bags. When I was finished, they would be tossed in the closet or the garage. The cats (any of 5) would inevitably pee on the bags later- the contents of those bags would be lost for who knows how long. I walked down the hallway to find my mother on her hands and knees. She was picking up clumps of animal feces and placing them in bags. After picking them up, she would immediately spray shaving cream on the carpet. There she was, frantically scrubbing at the carpet.
“How does this house get so fucking filthy?” she screamed as she heaved a pile of clothing at the wall beside me, grazing my flank.
“That’s what happens when we don’t clean, mom,” I attempt to speak calmly.
“Wellmierda, why don’t you clean?”
“Because you scream at us when we do.”
I shook my head, knowing it was impossible to win this argument and walked away to the fading sound of Spanish screaming in the background. I found a secluded corner to allow me to take a slow and steady breath and remind myself where I was. I was a nine-year-old girl with strong empathic tendencies. This was my hell.
This was the standard practice in my home the night before any guests would arrive. I was ten before I realized that there was something wrong with this picture. When you are young, you accept your reality as the norm. As a result, I had become comfortable in the chaos. Psychological abnormality became the normalcy to me. I had developed a form of verbal acrobatics, an emotional do-se-do that was necessary for survival. Rather than focus on what was right, I was focused on what would calm the situation. I was the defuser of the house, which was an interesting role for the baby. I was around the age of eleven when I realized that asking friends over simply wasn’t worth the hassle. The stress it would put on my mother to put on heirs, the fights that would occur between my parents, the deflected anger placed on myself or my sister; there was no birthday party that could justify the need.
A few years later, we finally found a name for my mother’s condition- Huntington’s Disease. I breathed a sigh of relief. She was never diagnosed. It was actually her uncle, her grandfather and by proxy her mother. We would soon find that this was a disorder that was both genetic and did not skip generations. When I heard the news and heard that it was hereditary, my heart did a little dance.Maybe she’ll get help.I thought to myself, not even remotely concerned about the implications this disease might have on me were she to test positive.
According to dictionary.com, Huntington’s Disease or Huntington’s Chorea is “a hereditary disease of the central nervous system characterized by brain deterioration and loss of control over voluntary movements, the symptoms usually appearing in the fourth decade of life.” It can begin as early as your twenties with such benign symptoms as manic-depression, anxiety, short term memory loss, obsessive compulsive disorder, etc. Over time, one develops forms of dementia and eventually the deterioration of one’s motor skills. The patient can experience tremors, loss of balance and the inability to swallow; the possibilities are frightening and seem to be endless. This is the clinical definition. If you’ve ever watched someone you love deteriorate from any illness, you will understand me when I say that the clinical definition does it no justice. I have seen strong women dissolve into shells of themselves. I’ve seen the women that I love trapped in their own bodies and screaming to be free. The clinical definition does not account for the pain. Of course it never does, does it?
I was in my mid-twenties when I finally found the courage to escape and find a life of my own. Somewhere amidst my childhood my mother and I had psychologically switched roles. I had donned the role of mother and she was the petulant child. Suffice to say that alongside her mental illness came a heaping side serving of emotional co-dependence. The pull to protect my mother even today is strong. It was so strong, in fact that when my father left her the day after my 19thbirthday it consumed five years of my early adult life. So when I tell you that I escaped, I truly mean it in every sense of the word. I had to break those emotional ties. It was painful, but necessary for my own survival.
I’ll never forget the day that I came back home to see her. It was two years later. I was married this time. I was taking my husband home to meet the family and we were going to settle in California for a bit. I attempted to prepare him for her.
“Think of her as a very angry child, maybe ten or so. She’s kind most of the time but if you expect her to act like an adult, she will let you down every time.”
I always attempt to prepare my friends and loved ones for my mother, but it’s simply not possible. To this day he will tell you he was not ready for what he saw. No matter how hard I try, most people don’t believe me, or it just doesn’t sink in until they meet her. My mother is an experience that even this story could not accurately describe.
She had found a one-bedroom apartment in Martinez just near my sister. The complex was clean and scenic very appropriate to my mother’s tastes. We walked up to the entryway and knocked and as the door barely cracked open we were instantly struck with the pungent odor of cat urine. I was abruptly returned to my childhood. My husband, a clean well-kept man was already shocked. He grew up in an immaculate home in a military family. This was several layers of foreign to him. I knew he was in for a rude awakening.
When we stepped in the doorway, we found my mother’s apartment in shambles. She was using a mattress on the floor of her living room for both a bed and a couch. She had attempted to clean for us. This involved her taking fancy comforters and placing them over her “couch” and hanging sheets on the walls for decor. Still, the apartment was much like my home growing up. There were piles of papers stacked all over the counters. Her television was resting on the floor along-side several piles of VHS tapes. Piles were my mother’s version of organization. She had this crazy idea that somehow if you were able to neatly stack the clutter, this somehow made it clean. Had I opened the closets, I was sure to find bags of trash and clothing shoved in them for our arrival.
I turned to my right and instantly my jaw dropped. I clutched my husband for balance, completely unprepared for what I was about to see. My mother had written notes all along the wall. Jumbled, unorganized scribbled notes were all you could see on the entryway of her apartment. It was like wallpaper. It was covered in green and blue markers for the entirety of the wall. Much like me, my mother’s mind has always been very busy. She has hundreds of chaotic thoughts every day of her life. When I was young, she devised a way of releasing them from her system- writing them down. So she did, all the time, on any scrap of paper she could find. I remember being very upset one day because I brought home a report card with all “A”s only to find it covered in notes the very next day. I was used to my mother’s notes. In fact, as I grew older I used to read them in attempt to gage her current mental state. I found that the deeper she went into depression, the less organized her notes would become. Sometimes, she would fixate on a topic and give herself clues.Don’t let Lauren near Christie.Yes, I was used to her notes, but it was never like this. She had never reached the point of psychosis where she had found herself writing on the walls.
I left the building to find a quiet place to breathe again. My husband followed me.
“She has no furniture,” I told him, nearly in tears, “She’s living in filth. God, she’s writing on the walls. Why is she writing on the walls?”
Before I knew it, I was thirteen again and needing to take care of my mother. I needed to fix this. My mother couldn’t live like this.How could I be so selfish as to leave her? I should have known she would end up like this. I should have stayed. I should have, could have, and would have fixed this. Maybe if I had been there… My mind was a swirl of guilt and regret. I was the prince and she was the damsel in distress. Ihadto save her. The most frightening part of this entire story is that my mother was even medicated at the time. This washerversion of healthy.
I tell you all of this not to seek pity but rather to help you understand exactly how long it has taken me to come to this room here today. I’m thirty-one now and that little girl is long gone. Still, no matter how far away I travel from those moments they still loom around me. You see, it never escaped me in my youth that one day I might find the reflection of my mother in the mirror. It’s true that most women fear becoming their mothers. Yet somehow, when you add the genetic factor and unknown variables it makes the concept seem simply unavoidable. This is why I was never tested until now, or rather three weeks ago. It was three excruciatingly long weeks ago when I found myself walking through heavy glass doors to introduce myself to a young woman at the front desk. There was a lump in my throat as I placed my purse on the counter and leaned in a bit to speak.
“Can I help you?” said the receptionist, her eyes still locked on the computer in front of her.
“Y-yes, I’m Lauren Ferguson. F-e-r-g-u-“
“Yes, ma’am. Just sign here and have a seat, she’ll be with you shortly.”
I signed my name and grabbed the clipboard she was shoving in my direction. I took a moment to shrug down a bit in attempt to catch some eye contact from her.Nothing. My eyes instead scanned the room where I saw two other patients waiting who seemed just as nervous as I was. There was a tall man in a well-tailored suit who was feverishly tapping his fingers on the coffee cup in his hand. There was a hallow sound that echoed through the entryway in rhythm with his fingertips. I wondered if it was even full. Then there was a girl, a young girl. I assumed she was a patient, but the concept really seemed unlikely given the circumstances. She couldn’t have been more than ten. She was sitting in a large leather chair with her knees folded to her chest and an iPad resting on her knees. I remember her distinctly because her brown hair reminded her of myself at that age. Ironically this disease and the reason for my visit had stolen my youth. She seemed to have hers very much intact. I envied her.
I waited for a few minutes, which were hours in my mind. The receptionist called name after name until finally she called mine. I jolted from my seat and as if she were calling role in class, I screeched “Here!”Finally, eye contact!She ushered me into the back room where I sat in a large office with only a desk, two chairs and a very large box of tissues.Yes, of course.
“Thank you,” I muttered at the woman.
I’m fairly certain she said something about the doctor being in shortly. My mind was far too focused on the sheer size of the tissue box. It seemed colossal. Had you asked me then, I would have told you the box was the size of my head or perhaps larger. I didn’t hear the doctor come in and sit down at her desk. She extended her hand to me but her words were somehow muffled through the filter of my mind. I blinked a few times to shake my head clear.
“I’m sorry what?”
“Mrs. Ferguson, I’m Doctor Hadley. I’m here to discuss your options.”
Yes, that’s better. English this time.I extended my hand out to shake hers before sitting down again.
“So, tell me a bit about what brings you here today,” she asked, pen in hand.
I’ve had this conversation dozens of times by now. To say that it’s taken me a long time to get here is not to say that I haven’t initiated the process- only that this is the first time I’ve actually made the appointment. This is the time when I convince the doctor that yes I really want to be tested for the disease and yes, I’m really sure that it actually runs in my bloodline. Doctor Hadley is a geneticist. Her purpose is to ensure that I have weighed all the emotional pros and cons of taking this test. She will ask me a long list of questions regarding my family tree. She will ask about my current physical condition. Then, she will ask the question that angers me every time that I hear it.
“Are you sure you’re ready?” She will ask in as empathetic tone as she possibly can.
When I was much younger, there were also financial pros and cons to receiving the results. There were many patients who wished to be tested anonymously to avoid issues with medical insurance down the road should they test positive. I didn’t care. This process has always been the most nerve-racking for me. While I understand their purpose, what they end up accomplishing is opposite their goal. What they mean to do is calm my nerves. Instead, they take every last bit of emotional strength that I have from me so that I am able to convince them that I am really really…no, I mean REALLY ready.
“Doctor, I’ve known about this disease since I was twelve. I’ve seen amazing men and women first hand go through this disease. After all of these years of possibilities swimming through my head, how could I not be ready?”
We spoke for nearly an hour. She provided me with all of the statistics and information I had read and known my entire life. I tried to give her the benefit of the doubt. I know I’m not your average patient. She couldn’t possibly understand how I’ve obsessed about this very moment since I was twelve. She couldn’t possibly know that I’ve read every piece of literature I could get my hands on. She couldn’t know how I begged and pleaded my mother just to get tested and get some help. She couldn’t possibly understand. So I listened. I took her pamphlets. I nodded and smiled at the appropriate moments. I even jotted down a few notes as if she had taught me something new. And when she was finished, I extended my arm and asked her to draw my blood.
I was surprised to find out that this process was not over.
“Oh no, we have to examine you,” she stated plainly, “Right this way.”
She gestured me to follow her to another room that looked much more like a doctor’s examination room. It had your standard examination table and a hospital gown along with several chairs surrounding the table.
“That gown is for you, everything but your underwear comes off and the gown does up in the back. Place the sheet on your lap, I’ll be back in a bit.”
I found myself confused when she left. Thiswasgenetic testing, right? I checked my paperwork to confirm I hadn’t in fact come to my gynecologist. No, this was the correct room. I tried to imagine what she could possibly learn about my genetic history from my disrobing, but I followed directions and waited. When she knocked, she had two other individuals with her.
“Mrs. Ferguson, this is Doctor Bailey. He’s a studying geneticist and he’s here to learn from me,” Doctor Hadley spoke as she smiled.
“Oh, nice to meet you Doctor Bailey.” I extended my hand to shake his.
“And this is Ferguson, Lauren Ferguson,” nodded the doctor. “And Mrs. Ferguson this is Judy, she’s a genetic counselor. She’s here to take notes.”
I blinked twice, suddenly feeling much more naked than before. “Oh,” I said. “O-kay.”
She stood in front of me and slid both of her hands around my jawline, turning my head back and forth before she spoke.
“She has a round face,” she commented in the direction of Judy. Judy immediately typed this in her laptop.
I must have seemed concerned at the commentary as she immediately stated, “I’m just going to be making a lot of comments about you. I’ll be speaking a lot in generic terms, both negative and positive for data collecting.” I nodded in response.
“She has stretch marks in her right arm, purplish in color and a birth mark on her left hand on inch in diameter. Do you agree doctor?”
“Yes, yes, this seems right,” echoed Dr. Bailey.
The next hour was a series of questions and comments just like this. They commented on my tattoo, my reflexes, the condition of my teeth, and the size of my breasts. Each detail seemed somehow insignificant to me. I felt like mare who was being examined by a potential buyer. It was over an hour just like this. They watched my every movement and commented on every minute detail about my body.
“So… Are we ready to actually test me now?” I gulped before I spoke, clutching tightly at the sheet in my lap.
“Yes, we can.”
I sighed and extended my arm for the blood draw. I have a very large protruding vein on my right arm. I very quickly pointed it out for her in order to expedite the process. It’s amazing to me how powerful just a few drops of blood can be. Those drops of blood would tell me my future. They would decide if I would end up like my grandmother- unable to walk or speak and barely able to swallow, trapped in body but still very much aware. As she drew the blood, I saw my grandmother’s face and her hand clutching onto me just a little bit tighter when I told her I had to go. I heard her voice attempting to speak but only able to release grunts and groans in response. I felt myself kissing her forehead before picking up my bags to get back on the plane and head back home to Texas. I swallowed hard and continued to watch the blood being pulled from me. Or perhaps the results would be negative and I could live a normal life and grow old with my husband, have children and just be every day run-of-the-mill crazy. As I watched her extract the blood from my veins, all I saw were possibilities in each thickened drop. I counted to three as I exhaled slowly and prepared for those long three weeks of waiting.
So now here we are in this same office three weeks later and the results are in. This is the moment when they decide my fate for me. The same haze existed today as it did three weeks ago. There still seemed to be an echo in my ears. Only this time, it was as though I was floating into the back room. This time when I sat down, I turned my chair towards the door. I wasn’t going to let her surprise me this time. No, I wouldn’t wait another moment for the answer. I would know by her face. So when she walked in with her clipboard and a bright smile, my jaw dropped and I fell to the floor. I actually fell. Just like a movie, I felt myself falling in slow motion. In the distance, as I grew faint I heard one word far in the distance. It was faded and slowed as though there were walls and even years between us. With the one word, “Congratulations,” the room went black and I fell unconscious.
You see I had prepared myself for every possibility but this. It had never occurred to me, not even once that the results might be negative. So now here we are on the floor of the doctor’s office. They’re calling out to me, waving their hands in front of my face and desperately trying to make sure that I’m okay. My husband is here.Wait, what is he doing here? He’s all the way across town.I feel his strong arms wrapping around me and carrying me out of the office. Before I know it, I’m back home and in my bed. A loud noise jolts me out of my sleep and like the girl in the waiting room I sit up and hug my knees. As I rest my chin on my forearms and look into the shadows of my bedroom I whisper quietly to myself…. “So now what?”