“The Cone of Shame”

         Bridget and Koi chase each other through the house, whipping around corners, clawing against the carpet for traction, rolling in a tumble of black sleekness and white puff over the foot of the bed. This represents their last bout of energy for the evening before they’ll vie for the mound of pillows and blankets tossed into the floor of the master bedroom.

         I know Bridget divides time into three categories: Before Koi, Before Grammy, and Now. In her past life, she enjoyed the indulgences of “Only Dog” status. Although she still had the two cats around, they rarely deigned to acknowledge her presence. Occasionally Padme would swat and hiss at a playful Bridget, but most of the time they lived happily ignoring each other.

When Koi came along, Bridget allowed him to snip at her. Her poor ears looked tattered for a little while. I expressed concern to our vet over the little bites she endured, and he responded, “When she knows Koi is old enough, she won’t let him get away with this nipping.” And, sure enough, one day Koi’s teeth lodged into Bridget’s leg, and she snarled with full ferocity, sending him tumbling head over heels. His approach with her after that incident showed more respect and caution.

When my mother joined our household last year, Bridget’s life changed even more dramatically. Her daily walks to the park ended. Occasionally David or I may manage to take her onto the back trails, but most of the time she’s housebound. I realized this week just how these changes in our lives have stressed Bridget. Normally a pretty laid back and eager dog, she now parks herself by the front window and barks at anything or anyone that passes.

A couple of months ago, Briget clipped her leg on a rock outside. She licked at the injury with neurotic fanaticism until I wrapped the sore. Then her focus shifted onto beating the bandage. It didn’t matter what kind of covering I devised for her leg, she’d manage to get it off before the end of the day. Eventually, the wound hardened and started to mend. A week ago, she injured her other leg by gashing it against one of the rocks out back that line my gardens. This time, she ripped through the bandages in record time and licked the entire area into a hot spot. Not wanting a repeat of her last injury, I researched some home remedies for hot spots.

My research led to several reasons dogs lick and chew at areas of their skin:   allergies (which Bridget has), infections (which she doesn’t have), mites/fleas (none), and behavioral issues. It troubled me that perhaps Bridget needs a little TLC. I’ve placed her in a “cone of shame” to prevent her from licking at her legs. Of course, every time I scratch her ears for her or rub her tummy, I tell her she looks pretty. When I apply cloths soaked in black tea to her leg, I shower her with attention. I bought a soothing lotion specifically for hot spots and dote on her as she lets me massage the ointment into her skin. More importantly, I know I must find the time in my day to take her on her walks again. Today’s rain ruled that out, but tomorrow I’ll take her along the roads near the park if the trails are wet. Otherwise, I think I should be the one to don the cone of shame.

Copyright 2011 Elizabeth Abrams Chapman

“Difficult Decisions”

         In recent weeks, connections on Facebook led me to discover WeHaveAFace Organization—The Huntington’s Disease Project. This page connects the community of Huntington’s disease soldiers with pertinent articles on current research projects worldwide. It weaves together (from everywhere imaginable) different support groups and organizations for people dealing with the overwhelming battles HD families must fight.

         My participation, so far, consists of a few comments sprinkled here and there as I “get to know” this wonderfully open group of people. Their approach to giving a face and a voice to the individuals and families dealing with Huntington’s disease proves inspiring in its simplicity—We are here!

         On a recent status update, someone posted the discussion topic for Monday, December 12^th as dealing with, among other things, euthanasia. I cannot describe the heaviness in my heart when I think of this topic for this group of people. For families burdened with HD, discussing DNR (Do Not Resuscitate) forms only scratch the surface of the end of life decisions individuals and families must make. In the case of HD, clear advanced directives need to exist, and families need to double check and update changes frequently.

 When I initially researched HD, I sat with my mother and discussed options like tube feeding. She adamantly refuses this option. This year, at eighty-one, she’s begun having more difficulties with swallowing. We’ve changed her foods and puree some items on her menu. She eats in silence with the television muted. I no longer sit at the table to chat with her, but instead sip quietly as she eats her frequent meals. I watch her fatigue and monitor her carefully, and I feel pleasure that she can still feed herself. All of us know that eventually chewing and swallowing food will prove more and more difficult. Choking becomes a constant fear for those with HD.

Hypothetical discussions by churches, politicians, medical schools, or ethics classes on issues like euthanasia diminish to trivial when framed by the reality of a family suffering with Huntington’s Disease. We don’t deal with “what if” in some abstract form. The undeniable reality of the final stages of Huntington’s Disease means, from the first day of that positive test result, we must face our mortality with knowledge of the quality of life we must endure. With my mother refusing tube feeding, I know the possibility exists that I will watch her starve. I don’t know where or how I’ll find the strength to make it through that time when it comes, but I do know I’ll honor her decisions.
          My mother's condition remains better than most HD patients. Every holiday, I find myself confident that we'll celebrate together again next year. However, a future more than eighteen months or two years becomes a dimmer prospect. We spend our energy "smoothing" out my mother's days with as little stress as possible, and her care-giving has become the focus of our lives; but nothing will stop the inevitable progress of her disease.

What I do know is that our legal system takes away choice. The choice of a peaceful and dignified way for my mother to decide when to end her life. Years before she even knew she had HD, my mother had spoken with passion on the right to die. She expressed frustration once that she cannot expect the same respect for her end of life that she’s given to her own pets in the past.   She cannot have instructions that a doctor or medical official, with family members present, assist her in dying with the self-respect her life demands.

Edna Abrams July 2010

Copyright 2011 Elizabeth Abrams Chapman

"The Middle Child"

Middle child   

between curly hair with doe brown eyes   

and an only son   

one five years ahead, the other five behind   

imitating the elder while   

lingering in childhood with the younger   

envying her poised elegance and   

longing for his sweet innocence   

Middle child   

between worldliness and naiveté   

flanked by her play for independence   

and his everlasting childhood   

expecting more from myself   

learning by her mistakes   

benefiting when parents learn   

it’s something kids just do   

Middle child   

between reserved solitude   

and gentle attachment   

becoming reliable and resilient   

out of necessity and then habit   

passing white glove inspections   

knitting and purling the blanket of family   

needing its comforting warmth   

Copyright 2011 Elizabeth Abrams Chapman

“The Places We’ve Been”

            Over the years, we’ve taken about seven or eight vacations. When David worked as a freelance illustrator, we often couldn’t take trips because we couldn’t absorb the loss of a one week or two week’s pay on top of the cost of a vacation. Many people take for granted the paid vacation time they receive from companies; but for the self-employed, it’s an entirely different story. With our family escapes coming years apart, David never liked returning to a place we’d already stayed. A couple of times we visited friends, but most of our excursions took us to some place new to all of us. Sometimes, we stayed in Texas to enjoy local outings at Renaissance fairs, or we ventured to Galveston or Padre to worship sand and sun. A week at Big Bend National Park remains one of my favorite memories, and we fell in love with the town of Gonzales with its marvelous homes and quaint shops.

            When money and time synched up, we ventured far from home. We took Paul to Washington, D.C. to see Fonzie’s jacket and the Washington Monument, dipped into Virginia for rollercoaster rides and walks along battlefields. A trip to Georgia to stay with friends found us climbing Stone Mountain. We journeyed to San Francisco for cable cars, Height Ashbury, The Exploratorium, and Chinatown. Our stay in Seattle found us at museums one day, the Pike Place Market the next. We delighted in rolling in several feet of snow on Mount Rainier. Last year, David and I finally took our honeymoon with a trip to Ireland!

            I don’t know exactly when we began commemorating our vacations with decorations for our Christmas tree. On one trip, we longed to have some little token of our travels that didn’t cost too much and wouldn’t break on the return trip. Somehow, we settled upon an ornament. We thought it the perfect souvenir because we knew we’d take a moment to relive our trip each year as we adorned our tree. We’ve had to create some unusual mementos since we took several trips during the summer months when stores didn’t have Christmas ornaments on their shelves. The search for the ideal keepsake often became a family quest as each of us sought the finest reminder of our travels.

Copyright Elizabeth Abrams Chapman 2011

           

“Ornaments”

         The best part of decorating the tree comes from the delight of rediscovering favorite ornaments each year. I love carefully unpacking those special Christmas tree decorations that hold wonderful memories for us. When I cautiously pull the two white “snow” fairies out of their protective boxes, I re-experience the thrill I felt upon finding them in the store over thirty years ago. Even in the earliest days of our friendship, David and I loved all things fey, so discovering these adornments proved fateful.

             Over the years, my appreciation for Christmas ornaments led to an ever widening search for an addition to the collection. Many friends and family members contributed to our tree, and each year as I find the perfect place for each item, I take a moment to remember the giver of these small presents.

         I treasure both the little Asian inspired decorations we found in a box we inherited from David’s grandmother along with the last ornament my father picked out for us before he died.

          

    I cluster the trio of hand crafted ornaments my aunt made years ago, and find a special place for the lovely and unique snowflakes she fashioned.

         The small collection of ornaments we made on a rainy and cold afternoon with a five-year-old Paul tug at my heart when I hang them each winter. This year, I cried as I held the delicate cross stitched decorations my mother so lovingly sewed years before her Huntington’s disease symptoms robbed her of so much.

       Decorating the tree at our house takes an entire day. Partly because we have so many adornments, but mainly because I linger over many of the memories these small embellishments bring forth.

 

Copyright 2011 Elizabeth Abrams Chapman