Saturday, December 3, 2011

“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?"
“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.
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

Friday, December 2, 2011

“Little Gifts”

         As Christmas approaches, I know many people who’ll pull out their credit cards to purchase gifts for friends and family. I have one friend with so many children and grandchildren that she and her husband take out a loan every December to cover their Christmas expenses. They dutifully make payments until the final installment each November, and then they start all over again. For some people, these gifts stem from an honest desire to treat their family to something special once a year, and this gesture comes from the heart. For other people, gift giving twists into a competition among various family members on who can spend the most. This distortion of Christmas feeds the commercial frenzy we witness in our society today.
         Gift giving and gift receiving feeds one onto the other. People who love giving gifts truly enjoy every aspect of the giving process. They like hunting for the perfect present, even if it isn’t a total surprise to the receiver. The giver takes great pleasure watching as a gift is unwrapped and appreciated. For this person, it really is better to give than to receive. By the same token, the person who draws joy in giving tends to also be a gracious recipient. This type of person feels satisfaction with all types of gifts, even the little ones.

Copyright 2011 Elizabeth Abrams Chapman

Thursday, December 1, 2011

“Defense Mechanisms”

Defend and Protect at all costs    
bury unpleasant thoughts and feelings under, down, below    
refuse to accept reality    
deny, deny, deny    
change existence and rewrite your life    
fabricate your lies until they morph into your new reality    
regress or act out    
childishly punch the wall of your frustration    
disconnect from your follies    
forget, forget, forget    
place each dissonant thought into a strongbox    
locked away even from yourself    
project your pettiness and bitterness onto the wholesome    
react in opposition with your infantile impulses    
blockade your imperfections behind fantasy    
beat your spouse, kick the dog—never harm yourself    
Defend and Protect at all costs    

Copyright 2011 Elizabeth Abrams Chapman

Wednesday, November 30, 2011


         A few days ago, I drove from our home to the Forum to make a Best Buy run. I swung by Paul’s house to bring him along for some window shopping. Before I knew it, I pulled the hybrid into the parking lot at the shopping center, shut off the ignition, and hopped blithely out of the car. After a few steps, I paused. I turned back to look at the car, at the traffic backed upon on the highway, and felt a shudder tremble through me because I couldn’t remember driving the familiar route. So engrossed in conversation, so focused upon my final destination, I had absolutely no recall of maneuvering from point A to point B. I hate it when I put myself on autopilot and always feel fortunate that I arrive at my destination safely.
         All of us slip into this nearly hypnotic state occasionally. In my favorite “husband story” I enjoy recounting David’s diligence as a young father. He changed an equal number of diapers, got up every other night for night changes and feedings, and tirelessly rocked Paul through numerous ear infections for two years. David quickly developed an evening routine to help smooth out our mornings. Every night, he boiled the baby bottles and carefully measured and mixed the formula. This drill became one he did effortlessly day after day. Each morning, I’d prepare Paul’s baby bag for his day with our sitter. I’d load in his favorite toys, extra clothing, a ton of diapers (we used fabric), and of course the bottles prepared the previous night. Imagine my irritation one morning when I discovered no bottles in the fridge! My tone of voice went beyond vexed and into total frustration because I relied upon David to do his chores the previous evening. As I ranted and raved, he defended himself, insisting that he had prepared the bottles. To this day I remember his total look of bafflement when he searched the fridge for formula. He began randomly opening various cabinets, and eventually discovered the bottles lined in precise rows in the pantry!
         I haven’t the ability to hide my tendency to move onto autopilot. The entire neighborhood knows that I slip into this gray and fuzzy area. Fortunately, my neighbors graciously close and lock the car doors that I leave wide open. Sometimes they even bring in that last bag of potatoes left sitting in the back. Recently, I put the dogs out back in order to take Mom out the front. I have to prop open the front door to wheel her down the ramp. I loaded Mom into the car, swung her wheelchair into the back of the station wagon, double checked her seatbelt, and proceeded to drive away. When we returned two hours later, I stood in shocked amazement to find the front door propped wide open. I’d forgotten to even close it!
         I’d like to rationalize and say that I have such an active life that I go into my autopilot mode as compensation. I’d like to offer excuses for my absentmindedness that would make me seem less flighty. I spend quite a bit of time thinking, thinking, thinking—about the next story, a previous story, a new “what if” scenario, a poetic line, a flitting piece of imagination that grabs my attention and won’t let hold. Creative minds just forget little details like putting away baby bottles or closing doors. However, I’m certain the reasons I go on autopilot run to the mundane—fatigue, inattentiveness, or age. I wonder, though, how many other people suffer from this same quirk?  

Copyright 2011 Elizabeth Abrams Chapman

Tuesday, November 29, 2011

"The Cottage"

Cottage on Inisheer, one of the Aran Islands, Ireland September 2010   

Whitewashed walls tinged rose by sunrise’s blush   
sashes—a splash of sky   
new thatch mixes with dew’s perfume   
while flowers and ferns embroider the path of home       
Door opens with smiles and cheer       
Peat banked in the hearth       
black pot nestles in amber embers simmering Guinness stew         
Lace daintily drips from the table        
—tatted by Grams’ steady hands       
Oatcakes totter on a platter       
sheep’s cheese, churned butter, honey, cream       
and tea brewed black—a midnight sky swirling with galaxies        
From the loft flows the fiddle’s enchantment        
a boy’s toe tapping, keeping the beat        
drowning out the past’s lament        
tears of yesteryear hidden in another song        
Cottage at Bunratty Castle
Share a pint   
Share a verse   
Share our life     
Welcome home!   
Welcome home.   

Copyright 2011 Elizabeth Abrams Chapman

Cottage at Bunratty Castle

During our entire trip through
 Ireland, a place I'd never visited before, I felt as though I was returning home.

Cottage on Inisheer

Monday, November 28, 2011

"The Mother"

"Nature Unveiled" by David Chapman   

Spirit of the earth   
nurture and comfort me   
cradle me within your open arms   
succor my hunger with your hope   
slake my thirsty psyche with new visions of our past   
celebrate the sun’s journey   
sing of the moon’s wax and wane   
pull me into your sacred circle   
ease my isolation by weaving me with gossamer     
to your core   

Copyright 2011 Elizabeth Abrams Chapman

Sunday, November 27, 2011

“The Rope of Love”

My hands grasp it   
               rough and coarse   
               prickling against my fingers   
I test its strength   
               tugging hard   
               yanking it this way and that   
Tentatively, I test my weight   
               Will it bear me?   
               Will it hold me up?   
               Will it carry me   
                     across the chasms   
                     over the ridges   
                     through thundering rivers?   
I examine it carefully   
               searching for flaws   
               weaknesses in its entwined strands   
Winding upon itself      
               enwrapping my fingers   
               enveloping my hand   
I trust it   
               swinging over the unknown   
               over the pit of my insecurities   
It gouges my hands   
               rubs me raw and blistered   
               as I swing   
It bears me   
               holds me   
                    carries me   
               even as it hurts me   
I don’t let go   
               and the pain lessens   
               my feet touch the ground   
I unwind it from my hand   
               my shaking fingers   
               smoothing against its heat   
I untie it   
               bind it loosely around me   
               feel its weight   
Its rough and coarse hairs   
               tickle my cheek   
               and I smile   
                     in safety   
                     in security   
                     in satisfaction   

Copyright 1995 Elizabeth Abrams Chapman