“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

“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

“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