"A Blogger's Still Life"

 

         I had no direction in what I hoped to accomplish through my blog. After attending a workshop one Saturday, where a marketing expert advised up-and-coming authors to blog, I decided to give it a try. I knew that I wanted to prove to myself that I could maintain a nearly daily record of my writing skills. Sometimes, I spent part of a morning sifting through the yellowed pages of my old journals, hunting down my early attempts at poetry. I enjoyed meeting young Liz again and selecting different poems to post online. Some days, of course, I wrote new pieces, carefully culling words to record my life’s events. I rediscovered my love of creating poetry over this last year. 

         The easiest posts to write, of course, center upon favorite childhood memories. Recalling the adventures of little Lizzy has helped me to appreciate my parents all the more. I’ve had fun zeroing in on the minutia of my current life, too. I challenge myself to find a way to describe a speck of dust, mimic with words squirrel play, or capture in a phrase the phase of the moon. With some entries, I’ve created scenes played out among imaginary characters. I’ve enjoyed these dips into the lives that I mold with my words.

         I don’t recall when I began chronicles of my mother’s battle with Huntington’s Disease and our ever changing roles as her caregivers. I’ve felt driven to describe the slow deterioration that my mother endures. These blogs voice my concerns and frustrations with the impact of this disease upon all of us. After my mother’s gone, they will also give testimony to her courage, and the love and admiration all of us feel for her.

         My blog sometimes slips into an explanation of my writing process, which often bemuses and amuses me. Over the last few days, though, I’ve shared my personal adventures with my dental and medical problems. The compulsion to share the vulture of anxiety that perched upon my right shoulder as I sat at the keyboard overrode the need for privacy. I found myself wondering about other bloggers. How much do you decide to share with your readers? What slivers of yourself do you carve out of your soul and place on display for all to see?

         My blog, I often joke, keeps me sane as I’ve become more and more housebound by my mother’s disease. It provides me with daily entertainment. It forces me to examine who and what I am. I find myself often visualizing my events as a still life. An artistic rendition of reality filtered through my eyes, heart and soul.   

          

 Copyright 2012 Elizabeth Abrams Chapman

"A New Journal"

            My freshman year in high school, I participated in a peer counseling program. The extensive training took place in a local hotel. The students who volunteered for the program, along with the faculty members involved, underwent eight hour sessions in counseling and therapy techniques for an entire week. At the end of my training, I could work in our campus “Rap Room” where other students could come in for confidential counseling. This multifaceted instruction knitted the peer counselors into a tight group as we learned about ourselves and each other. I don’t know if the teachers and administrators realized the depth of the therapy sessions we received, but that week profoundly affected my life. My goal to go to Texas A&M to eventually try for the veterinarian program altered forever into a love of studying behavior.

            The peer counseling training impacted me in another way because during that week I met another student, a senior, who kept a journal. In the months that we set up our counseling program back on our campus, this other student shared her journals with me. Her provocative poetry and insightful musings amused me. I fell in love with the idea of recording my life, my feelings, and my interpretations—myself—into the pages of a spiral notebook. So back in 1972, I started my first journal. I wrote about everything and nothing. All of the disappointments of high school lay neatly recorded in these little unassuming spirals. All of my first attempts at poetry, often with explanations, reside within these pages. All of the self-doubts and insecurities of living alone, starting college, and falling in love live within these volumes. Somewhere along the line, I shifted from spiral notebooks to folders crammed with so much notebook paper that the brads barely punch through and fold back.

       

     I never hid my journals, and occasionally I’d read a piece to my parents or a friend. Usually, my most current journal sat upon my desk for easy access in case I wanted to scribble down a thought or vent an emotion. The first time David came down to meet my family, I had to work. Being at loose ends, David decided to read my journal. My mother walked in and found him stretched across the bed, and stood in shocked silence. No one in our family would ever invade the private space of another family member, so to find David perusing my journals seemed wrong to her. David told me, of course, of his faux pas as soon as I returned home. Although I wasn’t upset, I don’t believe he’s ever picked up my journal since that one day.

            Eventually, a friend witnessed me scribbling in one of my folders and asked about it. When I explained to her that I’d been writing since high school, she decided the folders and spirals needed replacements, and she bought me my first bound journal as a Thank You gift. I remember holding the small volume in my hands, flipping through the colorful pages with their decorated corners. My fingers itched to write!

            Last night, I started Volume 72 of my journal. Almost thirty-nine years (to the day) from when I composed my first entry. This volume wraps a giant marigold around the spine and over the front and back covers, exploding in bright orange and yellow. My pulse quickened as I put pen to virgin paper, and once I started writing I couldn’t stop. I didn’t want to stop. I never know what thoughts and feelings my journals will hold. The unpredictability of life assures that this newest addition to my collection will center me through my heartbreaks and celebrate with me in my joys.    

Copyright 2011 Elizabeth Abrams Chapman

"The Best Laid Plans"

           I plan. As long as I can remember, I’ve set specific goals that I aim to attain. In my youth, I designed a year plan, a five year plan, and a nebulous “someday” list of possibilities. For years, I’d jot these objectives on the last page of my journals, sometimes including deadline dates. Many of these targets focused on simple things like to pay off a credit card in six months, plant bushes for Mother’s Day, buy a new chair for the living room, or replace the fence. I love that one since it’s been on my lists for the last five years!

           Then the years came where the lists shifted more to living goals: Harmony-not perfection, Count the good days, Listen carefully, Let it go. I imagine this shift came because I never crossed some items off the lists, never reached the goals. Or maybe I came to realize that some of those items never go away. There’s always something to buy or repair around a home. I like to think that my aspirations shifted into making myself a better person.

           During the last couple of years, the lists stopped altogether. I don’t want to remind myself that my washer and dryer approach year twenty-five and should be replaced. Also, I don’t want to shift into the future too far. Many days, I slip into survival mode where making it through the next twenty-four hours with grace and understanding seems enough of a focus for me. Those of you with elderly parents needing care understand this protective move. Planning ahead brings the possibility of too much loss and heartbreak. Instead, I’ve set aside my lists of goals because I know that within the next year, or even as little as six months, every plan could go awry.

Edna and Karl Abrams with us heading to a wedding

Copyright 2011 Elizabeth Abrams Chapman

"Different Drummer"

            I don’t remember when I learned to march lock step within society’s expectations. I flailed against rules and regulations in early childhood, fought against everyone’s efforts to shove me into a round hole. Adult persistence, Time, and fatigue wore down my share square edges until I fit, too tightly, into the binding expectations of our culture.

            I joined activities at school instead of heading straight home to immerse myself in words. I got a car, a part-time job, a college degree, a marriage license, a career and a mortgage.
Somehow, I found myself part of the system, hacking away at the natural shapes and quirks of students to for them into round holes.

            The Lizzy of my childhood was totally forgotten until a few years ago. Drowning in an isolation from being a caregiver, I pulled out my journals and discovered the adolescent Liz. With joy, I found I liked the optimistic, change-the-world girl who struggled so hard to fit in when she’d rather sprawl on her bed with Thoreau.

Copyright Elizabeth Abrams Chapman 2019

“Waiting for Results”

         “This is the doctor’s office. Your mammogram came back abnormal. We need you to schedule two more tests, a spot compression and an ultrasound.”

         With these words I add to my growing layers of stress. My worrisome molar with a possible new crown now fades to insignificant. Like most women, getting any kind of call for further tests means anxiety driven days and sleepless nights. I’ve done this drill on several occasions. Right before David and I got married, I had a pap smear come back with a “code” that required a second test. Everything turned out normal, but I had a tense couple of weeks while I waited to reschedule an appointment and get the results. I had a mammogram come back years ago with a “thickening” in one area that needed another look, so I’ve actually experienced this particular call back before. Still . . .   

         When I contacted the place where I go for my mammograms, the office had already scheduled an appointment for me on the fifteenth of this month. The kind receptionist said, “Of course, we can fit you in earlier if you’d like. That’s no problem at all.”

         Clutching the calendar in my hand, I realized that Mom has an appointment with her nephrologist on the fifteenth, I have the first phase of my root canal on the fifth, so the next date open is next Tuesday. I must make it five days in worrisome limbo just to get the tests done.

         The optimist in me cocks her head and states plainly, “Everything’s fine” because I’ve done this before. She begins the litany that it’s another thickening, just something different that needs to be checked more closely. Right now, her voice rings loudly and true since it’s only been minutes since that phone call.

         By this afternoon, doubt will nibble at my optimism. She’ll start slowly and imperceptibly to where I won’t notice the little nips she’ll take from my confidence. By nightfall, she’ll gobble up my hope and leave me restless and fearful. Doubt gathers strength in darkness. When the house falls into the silence of slumber, she’ll begin to whisper, “Maybe there’s something really wrong.”

         I will talk and write my way through this stress. I will process everything I think and feel with words. I’ll clutch my journal to my side like a life saver. Whenever I need to reassure myself, I’ll jot down words my optimist says. I’ll reread her reassurances as I cope with these next few days. I’ll write my blog, too, because sharing this means I’m not alone. I’ll talk to David, to Paul, to my mother (probably over and over again). I’ll call my sister as she’s gone through biopsies on two occasions with benign results.

         Within all of these words, I’ll find a way of focusing on hope and discouraging dread. I’ll say, “Stay in today” and not project into all of the unknown “what ifs” that doubt whispers into my ear.          

Copyright 2012 Elizabeth Abrams Chapman

“Have You Been Tested?”

         A couple of months ago, I headed to the doctor’s office for my yearly physical. This last visit, I scheduled an appointment with my doctor’s Physician Assistant in order to get the time and date I had someone available to watch my mother. Since I only go to the doctor once a year, I may not see the PA for a couple of years. She’s always very friendly and eager to catch up on my life changes. We all know that many variables impact our physical health, and these little chats can help the doctor flag possible future problem areas.

This became obvious fairly quickly when the PA queried, “Last time I saw you, you were getting ready to retire. Did you get to?"

“Yes!”

“I’ll bet you’re enjoying all of your free time.”

“Well,” I shifted back into my chair to get a little more comfortable, “I’m taking care of my mother now. She’ll be eighty-two in January.”

The PA tilted her head and smiled, “That’s good, that you can have her live with you.”

“It’s more stressful and demanding than I thought because of her HD, but we’ve adjusted to her routine, and we’re managing now.”

“Huntington’s? Your mother has HD?” she grabbed the computer mouse and checked my file. “Is it in your file?”

“I think so. Mom used to come here, too. We moved her to a doctor closer to our home a couple of years ago to make it easier on her.”

“Have you been tested?” she asked as she clicked a tab.

“No.”

She looked at me, blonde eyebrow raised in question.

“No. If I’m not tested, I have a fifty percent chance of being HD free. I can live with those odds. If I get tested, and I’m positive—well, that takes away my hope, you see?”

“If you do test, you could also know for certain that you don’t have it.”

“Or I’d know for certain that I do.” I shook my head. “For now, I have no symptoms. It may seem like denial, but I don’t have HD as long as I’m symptom free. I think it keeps me focused on the present, on dealing with my mother’s decline. That’s enough for me to handle right now.”

And with that our conversation shifted to my test results.

A few weeks later, I friended a young woman on Facebook because I saw one of her posts on a HD page. I’m slowly getting to meet people who either have HD or who care for family members with the disease. This ever widening network of optimistic experts guide my reading and keep me informed of what’s going on in the Huntington’s Disease community worldwide.

This new “friend” quickly emailed me with a brief background of her personal experience with HD, explaining that she (along with her mother and her sister) all have HD. At the end of her message, she asked, “Have you been tested?”

I found myself explaining again my hopeful logic on not having the test done. My siblings have also decided to forego testing unless we show symptoms. I don’t know if our ostrich approach to HD holds any logic, but dealing with a degenerative disease with little treatment options and no cure is overwhelming when handling my mother. I simply cannot add myself or my siblings into the mix right now.

My admiration for those at risk of developing HD who get tested grows with each person I meet who states, “I tested positive.” These courageous men and women (many ten or fifteen years younger that I) handle a life certainty with a level of determination and energy that’s daunting.

My view of HD skews to my mother’s experiences: extremely late onset, problems mainly with depression and anxiety, and relatively mild chorea. As she’s moved into the later stages of her illness, she’s struggling with rigidity, limited mobility, and problems with speaking and swallowing.

If Mom has to make a decision, she can’t unless we offer only two choices to her. So today, when we took her shopping for Christmas gifts, I’d say, “Do you want to give Paula clothes or something for her home.” Then it becomes a matter of always selecting two items until she settles on one. Mom adheres to a rigid schedule based upon the order of her daily routine, not time. I don’t think she can judge time at all anymore. However, for the majority of her day, her cognitive functioning stays sharp. We’ve learned how to structure conversations about the news, movies, or television episodes where she can comment in short phrases. Her problem doesn’t stem from not having something to communicate, but in having the ability to physically form the words.

I know from the research I’ve done that my mother’s progression through her illness is relatively stable and gradual. Some days, when I feel frightened about what comes next, I take strength in the fact that she’s not the typical HD patient. Perhaps that’s another reason I haven’t tested. I know that if I carry the gene, I’ll probably have an earlier onset of symptoms than my mother. Chances are higher that I’ll progress through the disease at a faster pace, and need more help at an earlier point in my life. Because of my current age, showing symptoms will happen sooner, rather than later.

Every day I record my thoughts, feelings, and reflections in a personal journal. If I don’t have HD, I hope that my experiences with my mother will help other caregivers. On the other hand, if I do have HD, my journals should reflect a log of someone who is pre-symptomatic and show the shift into the earliest evidence of the disease. By not testing, by not knowing for certain, I feel my journals may someday help another family.  

Copyright 2011 Elizabeth Abrams Chapman

“A New Journal”

            My freshman year in high school, I participated in a peer counseling program. The extensive training took place in a local hotel. The students who volunteered for the program, along with the faculty members involved, underwent eight hour sessions in counseling and therapy techniques for an entire week. At the end of my training, I could work in our campus “Rap Room” where other students could come in for confidential counseling. This multifaceted instruction knitted the peer counselors into a tight group as we learned about ourselves and each other. I don’t know if the teachers and administrators realized the depth of the therapy sessions we received, but that week profoundly affected my life. My goal to go to Texas A&M to eventually try for the veterinarian program altered forever into a love of studying behavior.

            The peer counseling training impacted me in another way because during that week I met another student, a senior, who kept a journal. In the months that we set up our counseling program back on our campus, this other student shared her journals with me. Her provocative poetry and insightful musings amused me. I fell in love with the idea of recording my life, my feelings, and my interpretations—myself—into the pages of a spiral notebook. So back in 1972, I started my first journal. I wrote about everything and nothing. All of the disappointments of high school lay neatly recorded in these little unassuming spirals. All of my first attempts at poetry, often with explanations, reside within these pages. All of the self-doubts and insecurities of living alone, starting college, and falling in love live within these volumes. Somewhere along the line, I shifted from spiral notebooks to folders crammed with so much notebook paper that the brads barely punch through and fold back.

            I never hid my journals, and occasionally I’d read a piece to my parents or a friend. Usually, my most current journal sat upon my desk for easy access in case I wanted to scribble down a thought or vent an emotion. The first time David came down to meet my family, I had to work. Being at loose ends, David decided to read my journal. My mother walked in and found him stretched across the bed, and stood in shocked silence. No one in our family would ever invade the private space of another family member, so to find David perusing my journals seemed wrong to her. David told me, of course, of his faux pas as soon as I returned home. Although I wasn’t upset, I don’t believe he’s ever picked up my journal since that one day.

            Eventually, a friend witnessed me scribbling in one of my folders and asked about it. When I explained to her that I’d been writing since high school, she decided the folders and spirals needed replacements, and she bought me my first bound journal as a Thank You gift. I remember holding the small volume in my hands, flipping through the colorful pages with their decorated corners. My fingers itched to write!

            Last night, I started Volume 72 of my journal. Almost thirty-nine years (to the day) from when I composed my first entry. This volume wraps a giant marigold around the spine and over the front and back covers, exploding in bright orange and yellow. My pulse quickened as I put pen to virgin paper, and once I started writing I couldn’t stop. I didn’t want to stop. I never know what thoughts and feelings my journals will hold. The unpredictability of life assures that this newest addition to my collection will center me through my heartbreaks and celebrate with me in my joys.    

Copyright 2011 Elizabeth Abrams Chapman