“Mom—Zero. Huntington’s Disease—Four”

I don’t want to keep score, but subtle changes remind me daily of my mother’s constant battle with Huntington’s disease. She isn’t winning.

Huntington’s robs Mom of her ability to speak. At first, we noticed slight differences, but now she struggles to answer a yes or no response. In frustration, she’ll mutter, over and over again, “I can’t. . . I can’t. . . I can’t” when I ask a simple question. I begin the guesswork. “Do you want to get up? Do you want to watch TV? Do you need to go to the bathroom? Do you want to eat?” I no longer ask her what she wants for her meals and instead select from the foods I know she can and will eat.

Huntington’s throws Mom back into her uncontrolled dance. For many months, her chorea subsided into a symptom that moved into her day in the late afternoon and vanished within an hour. Now the movements have returned with more force, they last longer, and they burn her calories at an alarming rate. I try to pump food into her as often as possible, but she’s dropping weight. Her hands and fingers look gnarled. Her knees protrude over calves that hang with loose flesh. When I help Mom get into her bed, my hands skim across her hips, and I now feel her bones.

In June, Mom could still eat out!

Huntington’s forces Mom into rigidity. A couple of weeks ago, Mom sat at the table and fed herself each meal. Now I sit next to her on the couch and spoon her meals into her. She’s able to manipulate some foods, though, on her own. I make certain she has brownies, cookies, or small pieces of chocolate in her tin. That way she can nibble on tidbits all day long. I realized the other day that her ability to suck on her straw diminishes after a few minutes. Now I help hold the lidded mug so her arm and hand won’t fatigue. I watch as her tongue flounders for control as it tires. I started adding a thickener to her liquids yesterday to help with her swallowing. I’ve begun a new routine to make certain Mom’s not getting dehydrated. I have drinks in both her bedroom and the family room. Whenever she gets into her wheelchair, I make her take a few sips. Before she gets to move out of her wheelchair, she takes a few more swigs.

Huntington’s saps Mom’s energy. Mom rarely takes naps. Usually, she’s up by six AM for her medication and a Boost. Up until a couple of weeks ago, she’d eat her first breakfast by eight o’clock and request something else to eat every two hours. Now, Mom returns to bed after she takes her medications and sleeps for another hour or two. She has started taking naps in the early afternoon. I think she’s storing up energy for all of the thrashing she’ll do when her chorea hits by three.

And so over the past few weeks, Huntington’s disease hit more runs and outscored Mom. This gradual diminishment may continue for a very long time. If I alter my playing strategy, Mom may regain some of her weight. With luck, she’ll follow her usual pattern and recover some of her losses.   

Copyright 2012 Elizabeth Abrams Chapman

        

“His Way”

pseudo intellectualism     

demanding attention with parasitic tenacity   

irrational and illogical   

he vomits     

anger   

spewing intolerance and injustice under the guise of patriotism   

he infects and incites   

taking pleasure in belittling   

priding himself on accomplishments borne by breaking others   

he kills   

hope   

in the hearts of those he can’t love   

demeaning those who need because he cannot give   

 Copyright 2012 Elizabeth Abrams Chapman

"Her Rain"

Her rain fell   
          a deluge of broken dreams,       
                    frustrated desires, missed opportunities     

          drenching the world     

                    with her bitter storms     

Her rain fell     

           a flood of regrets and sublimation     

                     poured onto her children     

           drowning each of them     

                     with her skewed and tainted love     

Her rain fell     

           a watery veil of manipulation     

                     pushing against the banks of reality     

           overflowing her boundaries     

                     with her disillusions and dissatisfaction     

Her rain fell     

Copyright 2012 Elizabeth Abrams Chapman

“A Different Divorce”

         I gained outlaw status without even trying. My upbringing and my personality, or just some vague essence of "me" proved too different for my matriarchal mother-in-law to tolerate, and very early on in my relationship with my husband, she instructed his siblings to exclude me, not accept me into the family, and to make me uncomfortable and unwelcome.

Of course, I didn’t know this thirty-three years ago when I struggled desperately to find my place in the dynamics of my husband’s family. Within the first six months, though, I learned that I could never raise my voice or correct any of David’s brothers or his sister. The first lesson came quickly as we unloaded and hauled our meager belongings up three flights of stairs into our first apartment in San Antonio. Two of David’s brothers decided to pitch the football into my own brother’s face, and as Charles carried a box at the time, it made it impossible for him to dodge the shot.  The other boys laughed hysterically.

“You stop that now!” I shouted at them. “If you think I’m letting you into this apartment after doing something like this, you’d better think again!”

“What did they do?” my mother-in-law asked.

“They threw that football into Charles’s face and laughed! I’m not feeding them dinner if they’re going to be mean!”

I didn’t anticipate the slap. My family doesn’t hit. My mother gave me my last spanking around my sixth birthday. My father yelled. My sister sometimes squished my cheeks together and told me I’d better listen to her, and my little brother never once raised his hand to me in anger.

I stood, dumbstruck in my new little apartment, tears brimming and cheek burning from the impact. My mother hastily set down the box she held and hustled me into the small bedroom.

“Well, Elizabeth Anne, you’ve definitely learned a lesson with your new mother-in-law,” she whispered as she put a cold washcloth to my face. “Don’t criticize her children. Ever!”

That dire warning became increasingly difficult for me to follow over the years. My husband’s family gathers almost constantly, so the potential for saying or doing the wrong thing loomed into my destiny with certainty. Although I longed to fit in with the family, I just couldn't. I came from a family that encouraged differences and independence. David's family wanted everyone to fit into the same mold. It was difficult because I didn’t drink. I didn’t smoke. I didn’t lie, or cheat, or manipulate. I didn’t hit, or scream, or even verbally defend myself from the little mean and cruel digs that stabbed at me during their family gatherings.

The Exclusion Game began during those first years, too. The rules are easy. Make certain Liz and David know about some planned outing or activity at the last possible moment so they have to decline the belated invitation. It always made us look like the ones who weren’t trying to get along because we couldn’t make a function. They always overlooked the fact that often we received the invite an hour before the event started. This game extended to the next generation, and my mother-in-law would claim she couldn’t include our son on sleepovers because “one more child was just too many.”

I cried many times, and I threw up often after visits. Whenever I did visit my husband's family, I tried even harder to fit into their expectations. During those early years, I called to suggest shopping trips or lunch out with my husband’s mother and extended invitations for dinner at our home. Most of the time, I received rejections for my suggestions. Sometimes my mother-in-law would accept an invitation, but then call to cancel at the last minute, or not show up at all. After three or four meals ruined because of no shows, I stopped trying. My husband insisted that his family didn't intend to hurt my feelings. They were simply "thoughtless."

One Thanksgiving, my family came to San Antonio to celebrate the holiday. We couldn’t make it to my in-laws until that Saturday, when the entire clan gathered for a second meal. As the kids played football in the front lawn, my mother-in-law came out onto the porch and stood next to me.

“You ruined my Thanksgiving!” she snarled.

“What do you mean? You had everyone here on Thursday but us, and you have everyone here now,” I responded. Then I continued, “I hadn’t seen my parents in four months. This was the first time this year all of my family has gotten together. You have you family together at this house every month!”

“I don’t care about you or your family!”

A simple truth.

My dysfunctional dance with my in-laws continued for more years than I can remember until eventually one brother-in-law physically harmed me. The details of that day burned forever into my psyche. The ability of this family to circle around, protect each other, and rewrite the event within hours made it clear that I could no longer count on being safe in their company.

And so I divorced my husband’s parents and siblings. This decision came after advice from many friends and even other members within my husband’s extended family. They’d watched the shunning over the years. They’d heard the comments not just spoken to me, but also said about me in my absence. They offered a more objective point of view and had enough distance from the situation to suggest I simply sever relations except for public events like weddings and funerals.

I recently asked for suggestions for blog topics from friends, and one posted the idea of writing about people in our lives that we’d love to hate, but have to love. For many years, that conflict of emotions swirled into every interaction I had with my husband’s family. I don’t think I’d love to hate them, but I also grew to learn that I don’t have to love them. Eventually, it dawned on me that I don’t even have to like them because when it’s all said and done, they never bothered to extend friendship to me, and they never accepted my tentative gestures. For some reason, from the very beginning, they simply didn't want me as a member of the family. I'm not even certain they know why. It makes me sad that they've missed the opportunity to get to know me, but so many years have passed now that I've lost all interest in anything but nodding courtesy at functions. I honestly believe that since I divorced them, they’ve felt relief in not having to deal with the unexpected catalyst my presence created within their family.  

Copyright 2012 Elizabeth Abrams Chapman

“Garages”

         My parents parked their car in the garage. A rare phenomenon in today’s world, but fairly common in my youth. Most of our neighbors kept their single car sheltered in the garage each evening. Fathers headed to work in the morning, and the empty space became an extension of our play area. Mom swept the smooth surface daily while Dad swished water over the cement every Saturday as part of his weekly yard work routine. We actually had a neighbor across the street who waxed her garage floors monthly (but that’s a totally different story).

         Our unfinished garage became a daytime fort when the sun bubbled the blacktop of our street into an oozy barrier to outdoor play. We’d haul a huge fan into the enclosure, zigzag clotheslines from corner to corner, and create tent heaven. This large space meant each of us had his or her section. I remember sitting cross legged on the cool cement as I devoured my latest Nancy Drew mystery. Beside me rested my little white transistor radio where Bruce Hathaway from KTSA introduced the latest summer hits. Charles enclosed himself into another corner where he feathered a water laden paintbrush over his watercolor books. Some days he played with his trucks, imitating the low grumble of a backhoe. Our tented town disappeared before Dad returned home from work.

         Some days, Mom gave us finger paints and let us decorate the entire surface with wild designs. She added sidewalk chalk to our art supplies, so we could spill art down our long, sharply sloped driveway. Other days, we hauled out our skates and converted the garage into a rink. I remember circling round and around to pick up enough speed that I’d catapult out the front, pick up momentum on the inclined driveway, and careen recklessly (and miraculously) into a 90˚ turn onto the sidewalk. Our garage became home to our own Tonka Truck Mayhem where our trucks performed incredible feats of death defying leaps and crashes, complete with sound effects.

         The house my parents moved into in League City boasted a large, two-car garage. With this added space, they decided to use part of the area for a ping pong table. Whenever they needed to place more than one car into the garage, they’d simply fold the table up on its hinges and slide it into the center. Eventually, my brother housed his car into the second side, but often his side provided space for setting up a train set.

         The first house David and I rented sported a two car garage, but we never got both cars parked inside because of David’s ultra-light. The wings folded up and slipped into a covering and neatly took up one side of our garage. When we bought our home, the ultra-light trumped the car in getting covered space in our single car slot. Eventually, the craft found another home, but by that time we’d become accustomed to having our cars sheltered under the canopy of our neighbor’s huge Arizona ash. The decision to convert part of the garage into David’s office seemed simple enough. We sectioned the garage into two parts. The back part became an enclosed laundry room and David’s first office. We kept the garage door on the front part, moved our old kitchen cabinets into this area, and set up a work and storage area.

         When we began the process of combining households this summer, the little garage became a dumping ground. Odds-n-ends stacked precariously on top of each other. If we didn’t know what to do with an item, box, or bin, we stashed it out of the way. “Out of sight, out of mind” didn’t hold true for me over the last few weeks. I longed to carve out a few hours of time to attack this area of the house. When my sister and her husband arrived on late Thursday afternoon, I knew I’d finally get the block of time I needed. Friday morning, before the temperature could climb, I headed into the garage. I cleaned out all of the lower cabinets, dumped out and reorganized all of the drawers. With a little effort, I rearranged things enough to open up additional storage space for a few more bins.

         Once I shifted enough around, Paul decided that he could move a few pieces of his equipment around and free up enough space in the old office to set up his DW kit! I love the idea of having our garage being a “play” area again. This time no one’s skating in circles or building tents. Instead of the sound of Tonka trucks smashing, it’ll be the sound of cymbals escaping from the garage.

Copyright 2012 Elizabeth Abrams Chapman