DESCRIBING THE SHARP EDGES
Halloween, Mountain City. It was one of the moments that made up that picture gallery, that series of images that revolved around life with a disabled brother.
The evening had just begun, with the light still soft and fading in the autumn sky, when the Trick-or-Treaters began arriving. I still had plans of going out for candy, but not for a while. The neighborhood, already lit all around by our elderly neighbors, anxiously awaited the children that could so easily be made happy.
We had a Tupperware bowl full of assorted candies, and Dad sat in the rarely-used living room. My brother, David, crawled to the door, enraptured as always by watching other people and cars going by. The doorbell rang and Dad answered, bowls in hand. The boy (maybe nine years old) standing in the doorway, dressed as a ghost, accepted his candy smoothly. He looked at my brother, curious, then asked innocently, "What's he supposed to be dressed as?"
I want to write about growing up with a disabled brother, but it's always been too painful to write about. Perhaps some distance can make for a better story, but there's no such thing as distance in my family's life.
There's a lot forgotten in the 30 years since he lived, but there's so much to remember. The birth, the first several weeks where everyone thought he was normal. The doctor saying, "It likely happened during the birth process, that he lost oxygen to his brain because they delayed your labor until the doctor-on-call could get there." The words cerebral palsy. The definitions, the degrees of severity, the changes.
This story has only a few of the little pictures, but it makes up the framework by which the big picture can mold itself. The majority of the little pictures must occur later.
Airplane. Allegheny Airlines, the first airplane trip I ever took. Not for vacation, not for visiting lost relatives. We went to Philadelphia so we could take David to the Institute for the Achievement of Human Potential, the IAHP.
Cheap all the way, too. The airplane, the hotels. We couldn't afford better. We really couldn't afford what we had, but we found a way.
The Institute was a large series of cement buildings, very architecturally "cutting edge." I only got to know one of them, though: the building where all the families went to learn how to improve their children's conditions. Dozens of infants, toddlers, children, teens…all broken somehow. Parents watching over them, talking to doctors, talking to other parents. But no "normal" children except for one. Me.
We learned how to make the therapy devices by hand: the patterning table, the vest with the straps, the long boards on the floor. In a few years, they would evolve to jungle gym-style horizontal ladder, large rotating disc, straps with which to dangle him by his ankles. We learned how to give physical therapy: "patterning," breathing, home schooling. Church members volunteered their time weekly, coming over to assist my tireless mother in caring for my brother. Dad helped when he could, but work kept him busy as minister of two small churches. And we slowly saw results. David learned to crawl, learned math, learned small syllables with which he'd express his most basic wants and needs.
Wheelchairs changed as he grew. A van became a necessity from the outset, with a hydraulic lift bought through donations from my grandparents' church.
Patterning took three people. One person stood on each side of the table, and one at the front. The front person rotated David's head to the left and right as the side people moved his legs and arms. It showed him how to move his body in order to crawl, and it worked.
The boards on the floor were thin and smooth. They were there to prevent his getting carpet burn from his constant crawling.
The vest went around David, then poles were inserted to the ends of the straps. A person on either side of the table rhythmically pulled and released, developing his ability to breathe more fully.
Straps hung from the horizontal ladder, and they were wrapped around David's ankles. He then was wound up and let go, spinning him. The doctors at the Institute said he'd learn better equilibrium. He always laughed the hardest in the straps.
The large disc also would help equilibrium, according to the Institute. My brother probably had the biggest "Sit ‘N' Spin" I've ever seen, and he looked forward to it.
He also got a home schooling. He chose answers by hitting large posterboards with different answers, and would be told if he had gotten it correct. He worked his way from recognizing how many red dots were on a card ("Which card has 72 dots, David?") to fairly advanced algebra over the years.
Late night, bedtime. Lying in the twin bed beside my brother's, I was trying to sleep. He craned his head above the bedrail and tried to throw his pillow at me. I yelled, he laughed.
Rough-housing always thrilled and entertained him. Blowing on his stomach, causing "rude" noises, tickled him. If he burped, he always laughed at how crude he'd just been.
Toy cars always held a fascination for him, and balls. Nerf balls prospered in our house. His idea of playing ball involved him throwing it the wrong direction and laughing as you chased it down. He enjoyed Three Stooges reruns.
He once crawled into my room when my pet hamster was rolling around in its exercise ball. I looked down from my reading just in time to yell, but he still swatted the ball. Rather than rolling away, the ball spun in place, causing my hamster to become violently ill for a few moments. Mom, who never liked my hamsters, laughed. Yes, in a strange way, I suppose it was amusing.
When I was in high school, there was another student there who had cerebral palsy. Hers wasn't as severe as my brothers. She could walk with crutches, and she spoke, though understanding her speech took some extra effort. She was treated well at the school, and friends would tell me that I should talk to her, but I wanted to do nothing less than that.
As I've grown older, a few people have suggested that I would do well in special education, or working with people who have disabilities, but it would be too much. I didn't avoid every disabled person I saw, but I didn't purposefully try to spend time with them. So heartless, I know.
When I attended my first year of college, the doctors told my parents that my brother's spine, under the weight of a body that couldn't have any posture, had begun to bend. They suggested inserting metal rods along his vertebrae, a major surgery that would take weeks in the hospital just for recovery.
I couldn't be there for the surgery without missing classes, but arrived over a weekend to sit with him so my mother could get some sleep in a real bed. I sat and read, talked to him, and slept in the chair for the night. The primary doctor took my parents aside the next day and said that my brother showed the best improvement in both spirits and recovery during the time I was there that one night.
How can I forget these things? I can't.
When David was first diagnosed, my mother spent some time pondering why he turned out that way. She looked for the reason that God was punishing her. She wanted to believe it was her fault. But after a few weeks of thought, she decided that he was not a curse from the Heavens for her lifetime of sin, but a sort of burden to test her faith. Although this helped her to be the strong person that cared for him, the logic remained flawed. Her love for her son was tempered by a weight that she felt she must bear in order to prove her spiritual worthiness, and that poisoned the family slowly.
But this is not my mother's story, no matter how much she appears in it.
The washer always seemed to be running at my house. We had to keep the cloth diapers clean, after all.
I learned quickly to be self-sufficient and quiet, because any time I took up could go to my brother. I don't resent that. I just understand where my private tendencies came from. And I understand that I've always been too old for my age. It happens.
When we lived in houses with basements, we had a temporarily-braced two-foot fence placed over the basement door. We had to learn that the first step down (or last step up) was a tad larger, since we had to ease over the fence as well.
In the winter, we wore toboggans with the initials IAHP on them. We pushed David to the top of the sledding hill and let him watch as everyone else played. On occasion, we pulled him along in a red plastic sled as well.
The high point of David's therapy, the point we worked him up to, was the day where he crawled over one thousand feet. Up and down the same halls, throughout the house. He had to crawl the whole way. Rolling didn't count. For some reason, he slept well that night.
We teased him constantly about how he got all the women. The ladies in the church played along, flirting with him. He flirted back, bashful eyes and sly smiles, hands moving to hide his wide grins.
The seizures happened often in the first few years. He breathed shallowly and turned pale. The doctors put him on a medicine that cut down on the frequencies of them, but never fully stopped them. It always seemed frightening, but it also seemed normal.
The house was clean. The meals were all home-cooked from scratch. My brother received more than eight hours of therapy a day for several years. We went to Philadelphia for most of them, annually. In many ways, David guaranteed our family's unity.
Standard outing involved packing a number of diapers and plastic bags, towels to catch some of his constant drooling, and Wet Ones wipes. If dinner was planned, then a hand blender and small Tupperware containers had to be included. Taco Bell worked nicely, because refried beans didn't need blending. Milkshakes and ice cream worked well in most other restaurants. Of course, we always parked in the front of the stores, but that wasn't much of a privilege. Grocery shopping took two people, one for pushing the buggy and one for pushing David. Of course, pushing David faster for short distances always got him to laugh.
We got used to the stares, though occasionally my parents would complain to each other about them. "If it had happened to them or their children, I wouldn't stare." More painful, but more understandable, was the hurt that always went with the young children that would run to their parents, pointing. We tried to explain it away as youthful ignorance, but Mom would mutter about how the parents should teach their kids more respect.
When we vacationed in Orlando one year, we spent a few days in Disney. The park employees always moved us to the front of every line automatically, no matter how long it was. On the haunted mansion ride, at the end, the voice says that a ghost would go home with each of us, and a mirror to the side shows a face hovering between the two people in each seat. My brother sat braced between my father and myself, and the ghost face transposed his own. He laughed.
My father once talked about faith healing. I asked him if he'd ever tried it on David. He said he didn't think it would help, but he would do a ritual for my brother if it made me feel better. I asked him to, and he anointed the doorway with oil. He prayed over my brother, anointed his forehead, and left him to sleep.
The next morning, it felt like Christmas. I wanted to rush in, and find him healed. When I did, he simply laid in the floor and smiled up at me. I knew then that God wouldn't fix it. I also knew, though, that he was still beautiful somehow.
Special doesn't begin to describe my brother. I may have to invent a whole new word for him.
Mom had a hysterectomy, and was told that she could no longer lift my brother. Dad still worked too often, and I had gone to college. He was approaching the cutoff age (eighteen) for the special government program that provided home nursing for the last two years, so my parents put him on the waiting list for a home.
He was accepted into a small group home a few months later, and was moved in. He cried the first few times we visited him, but it was out of fear and loneliness, not abuse or neglect. The home did very well, and he soon became more comfortable there than in my parents' house.
My parents had to file with the courts to maintain custody of him when he turned eighteen. Though he was legally an adult, he couldn't care for himself, and they had to establish continued guardianship.
In the last few months of his life, he started having more frequent seizures. He even was hospitalized for them. His doctor kept trying to get the dosage of his medicines right so he would stop seizing, but it never seemed to work. His health was changing, and I suppose we should have realized it. The seizures were a negative sign.
He died on Thursday evening, December 7, 2006. He was happy that day, went to bed as usual, and had a heart attack in his sleep. They say he probably didn't feel a thing. I was teaching an evening class on English, reviewing for their mid-term exam, when I got the call. By Saturday, we had traveled to Chattanooga for the first of two funerals, and the depth of my loss stunned me.
These are the pictures in the broken frames. These are the murals on the defaced walls. They're imperfect, but there's still a beauty that is difficult to describe. And one day, this could be the real start to a story. For now, though, this is the fragments of a broken mirror showing one reflection throughout. One of love through pain.