“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

        

“Starting a Tradition”

         I graduated from Texas A & M one Saturday afternoon in December and moved back to San Antonio the same evening. Neither David nor I had jobs, but we assumed we would each find something fairly quickly. As Christmas neared with both of us unemployed, our spirits sagged. My parents gave us an old aluminum tree they had in their attic, and we decorated it with the ribbons from our wedding gifts. We pooled our pennies and bought one album that we both liked. David landed a job the week after Christmas, but it took me almost six weeks more before I started working for a local law firm.

          By our second Christmas, I had returned to school and only worked part-time at a day care center. We managed to afford a gift for each of us, and we bought a few yards of thick white felt, red and gold sequins, green felt, and some red rickrack. Sewing together every night, we made our own tree skirt to tuck around a real Christmas tree.

         For Paul’s first Christmas, I decided to add to the tree skirt cutout pictures from one of the cute little outfits he wore that first winter. Across the little tummy of our favorite one piece skated adorable penguins. I took cotton to quilt the fabric and added more sequins around the edge. With that little addition, we began our first family tradition.

        

        Every year, as Paul outgrew his t-shirts, I’d set aside some of our favorites to cut and put onto the tree skirt. A pictorial record of Paul’s interests becomes a part of our holiday celebrations every year. I treasure remembering the Bert and Ernie and Cookie Monster phase. We have heroes like a Teenage Mutant Ninja Turtle, Batman, and Ghostbusters romping over the white felt. Pikachu reminds us of the hours spent building the perfect deck or hunting for that rare card. One Christmas, Paul designed the Christmas card we sent to family and friends, and we transferred it to fabric to add to the skirt. Even as a teenager, Paul would occasionally toss a much worn shirt my way and say, “Could you put this on the tree skirt?” Thus, we added a picture of a toaster and other odds-n-ends.

         I haven’t added anything to the skirt for many years, but I know there’s still room for additions. Perhaps we’ll leave spaces free for the next generation.

Copyright Elizabeth Abrams Chapman 2011

       

“Winter’s Rain”

It’s raining outside.   

            That cold, winter’s rain that seeps into   

            every fiber of your body. You long to   

            stand out in the wetness and   

                        melt   

into the gutter.   

            Swirling,   

                        ebbing,   

                                    flowing   

                                                down into the sewer.   

            You carry paper boats, and leaves, and   

            tiny, jeweled pebbles with you   

                        And you’re cold,   

                        You’re numb   

You have no toes, no arms,   

                                                no soul.   

                        When you should laugh,   

you cry bitter, hot tears of—   

                                                oneness.   

You have actually melted into the     

            Universe—you’ve gone from   

Substance to Time.   

            From Time to   

                                    Space.   

You feel nothing; yet everything.   

                                                You are,   

and again,   

                                                You are not.   

And when the rain stops, what then?   

You begin to lose the numbness—   

                                                            the oneness.   

You   

            dry   

up into a brittle essence of fire. You   

                                                            burn   

                                              with the pressure of other bodies—needs.   

And—   

            you   

                        wait   

                                    for the next   

                                                winter’s rain.   

Cuopyright 1976 Elizabeth Abrams Chapman

“Meet June Cleaver”

        

          I watched Leave It to Beaver through the first runs, no TV Land for me. At the time, I saw nothing wrong with June Cleaver’s immaculate appearance each episode. After all, my own mother got up every day, put on make-up and styled her short hair. She never donned a pair of blue jeans, or wore flip flops or tennis shoes. Although she didn’t parade around the neighborhood with a string of pearls around her neck, she always dressed nicely. I don’t know if that’s just the way women presented themselves in public back then, or if it had more to do with the limitations of my mother’s wardrobe.

         As a woman working outside of the home, I’d skim out of panty hose and bra the moment the front door closed behind me. As I pulled off my bra, I pulled on a t-shirt. I never owned any cute tops to wear around the house.  Even in my slimmest days, I preferred shorts or pants with elastic around the waist. During the school year, my after work attire consisted of either the one pair of Levi’s I owned, cotton shorts from Wal-Mart, or sweat pants. The money I spent on clothing went to my work wardrobe. I rarely spent anything beyond the minimum to clothe myself for summers and after work.

         During this summer, I relied upon my old standbys. Most of my shorts and t-shirts date back four or five years. I figure I’ll get one more summer out of them. As the temperatures have dropped, I’ve rummaged through the closet and the old toy chest that rests at the foot of our bed. I have sweat pants that are obscenely faded and ragged, or I have my old “business casual” wardrobe from work—there is nothing in between.

         “You look like June Cleaver,” David commented the other day when he returned from work.

         I glanced in the mirror in disbelief. I wore brown tailored pants and a very nice print top. Without thinking, I’d pulled out the earrings and necklace I’d always worn with the outfit. The drill of throwing on at least a little mascara, blush, and lipstick remains part of my morning routine, and my new short haircut always looks “spiffy.”

         I laughed at David’s comment, but realized that I have stepped into the hausfrau role effortlessly. And, if I have to be compared to a TV mom, I’d rather it be June Cleaver than Rosanne!    

Copyright 2011 Elizabeth Abrams Chapman