Just Like Them

I spent forty-three years at Sugar Loaf Health Center in varying capacities: on Staff as a broom pusher, House Keeper, Grounds Keeper, Cook, Med Aide, and Program Manager. In time, I was also Assistant to the Finance Manager, an Office Assistant, Assistant Administrator, and my last year as Director. I've seen every type of Resident with every imaginable malady and also rubbed shoulders with a mixed bag of employees.

As I sit on my screened verandah watching the yellow-orange leaves flitter to the ground on this gorgeous October day, I know that if I wrote about Sugar Loaf Health Center in the easiest way, chronologically, the work would be nothing more than a scattering of four decades of notes; there would be no noticeable relationship between one person or event and the next. True, the chronology would give the work a certain order, but it would lack sinew; it would have nothing to hold it together. The method I think best is to follow what's real.

I remember in the old days when Dr. Avery was Director. He was from the old-school and had a scientific name for everything from a pimple to piles . My notes remind me of the time I raised the word real at a Staff Meeting. The credential-filled, award-bearing Avery chastised me formentioningthe word real. He even growled pedantically.

"There's no such thing as real, Stewart. Real issubjective, and therefore not REAL at all. The only thing that isgenuine, authentic, is what isobjective. What can be measured. Facts, details, statistics. Forget 'real.' It's as unreal, as ubiquitous, as any idea."

I think Dr. Avery leveled that barrage at me thirty-eight years ago, yet I remember it as well as yesterday's monthly meeting. I remember it because of the tirade, of course, but also because he used the word ubiquitous. Until Avery and ever since Avery, I have come in contact with that world only in print. Definitely not a word any self-respecting scientist would ever be caught using outside a Staff Meeting.

In spite of the learned and opinionated Dr. Avery, I have come to realize that real is the most honest thing there is when it comes to people and, paradoxically, for precisely the reason Avery thought it wrong. Because everyone is different, everything changes, so if we're going to address people realistically it must be as they are at any given moment. And isn't that the very definition of ubiquitous?

As I watch my grandchildren playing what might be the last croquet game of the year, I believe that instead of following the forced, unnatural, and objective chronologically I use a more subjective approach and follow threads that wove through the forty-year tapestry that includes Residents, Staff, and Administrators as they naturally lead to the other. I trust the reader will find it much more real.

When I first arrived at Sugar Loaf I was a wide-eyed innocent. I believed everything I heard, was impressed by everything I saw, and had no notion whatever of abnormal or aberrant behavior. I was convinced that whatever ills there were would be cured by drugs, therapy, TLC, or time. The possibility that there were some people and conditions that might never improve did not enter my mind. And when someone died, it

seemed more like a normal, natural occurrence, the only ending possible under the circumstances. Because I was raised in a so-called normal family where no one was incapacitated and the elderly all died in their late 80's or early 90's, the scenarios at the Health Center seemed like fiction. Or even science fiction. For instance, the first note I entered in my forty-three year chronicle, after Dr. Avery's words, of course, delineated a man name Tommy MacInvey, a loving fellow who inhaled and exhaled the word 'real' in every breath.

Until he was three, Tommy was as normal as any boy in the neighborhood. Because he was born into a "perfectly normal" family, no one could understand the incident that changed his life instantly. One beautiful June day, when the leaves were just coming out full and the grass reflected a green so light and tender, young Tommy was seized by a body-wrenching twitch that threw him off his tricycle. His friends thought he was play-acting, but when they saw the whites of his eyes and his rigid body they knew something was wrong. Why young Tommy would have such a seizure no one knew. In time his condition grew even worse. Because of its severity he was given a lobotomy, and because of that he spent the rest of his life in a wheel chair. Finally diagnosed with Cerebral Palsy, the boy twitched, drooled, spasticly threw arms and legs in every direction, and could have become the skeleton in the MacInvey closet had the family not loved him so dearly.

The clannish MacInveys took care of the boy the best they could, but finally the burden was too much. They signed him into the Sugar Loaf Health Center with heavy hearts, but they also knew he would get personal care that only professionals could provide. I met Tommy when he turned fifty. And what an eye-opener he was my first day on the job!

When I first saw Tommy I reacted in keeping with the way my childhood

training prepared me concerning "cripples": I avoided him. I had never been near anyone with CP and was both afraid and slightly nauseated. Who knows, if I got too close, I might end up like him if whatever-he's-got is contagious. But because Tommy was so personable it didn't take long before I was speaking with him like anyone else.

I couldn't understand him at all at first: it took over six months to learn his speech pattern. In the beginning I'd nod embarrassedly or grunt yeah and pretend I knew what he was saying. In time, I could understand about three-fourths of his words, even to the point that I could interpret his words to visitors. Before Tommy I never dreamed I would do such a thing.

Tommy MacInvey stood out because of his character. He'd been through more in a half-century than most families combined in three generations. He'd learned to shave, brush his teeth, dress himself, go to the bathroom alone, to speak, read, and even sign his name. With a person afflicted as seriously as he, these were major accomplishments. In fact, every day was full of great events, from getting in and out of bed to feeding himself. If he'd been in a normal body with a stable nervous system tasks proportionate to his abilities would warrant Congressional Medals of Honor at least. But in spite of his phenomenal fetes, his greatest talent was how naturally he ingratiated himself to everyone he met. Except the two ruffians who went at Tommy with baseball bats years before.

I didn't follow the careers of those two scum but I'm confident they spent many years in window-barred facilities. What they left was a man not only with the handicap of Cerebral Palsy, but now one crippled for life, his knees disfigured and frozen beyond use. And yet Tommy was still as friendly as the youngest, most naive social worker who thought she could change everything. It was Tommy's strength of character that shone

through the bile of others and made him befriended by everyone.

I don't have to look at my notes to remember Tommy's favorite story because he repeated it so often it was pounded into my memory. Years before several doctors had prognosed that Mr. MacInvey would not live past his thirtieth year. Many times a day since that proclamation Tommy said proudly that he'd beaten the odds and just might live until he was eighty if he chose. Then came his version of Dickens',AChristmasCarol, concluding with, "And Tiny Tim had CP, but he only lived until he was eight." That belief held Tommy MacInvey over for many decades.

One time Tommy wheeled into the classroom where I was helping others with their writing. Naturally the CP-er wanted to join. He was convinced there was nothing he couldn't do short of run a hundred-yard dash or climb a cargo net. I told him we were writing about something important that happened to us in our lives.

Tommy was quiet for the next half-hour. I noticed he'd acquired a narrow secretarial notebook, one that could fit on his lap. I saw him scribbling quietly with a fat pencil as the others asked questions about spelling and capitalization. I was curious what the man would come up with. When everyone was gone, and only when he was satisfied he'd one his best, he cocked his head to one side and stared out his good eye. Stuttering almost incoherently, he asked, "Wha-a-a-t do you-u-u think of th-th-this?"

I gazed at his two pages in amazement. I couldn't understand a single word. The marks were so indecipherable they made chicken tracks look like refined calligraphy. Diplomatically I said, "You sure put a lot down, Tommy."

Looking at his sunshine smile I knew I couldn't stop there. But I didn't know what to say. Sensing my awkwardness, Tommy slurred, "I esss-

pesh-ially like the laaa-st par-aaa-graph-ph."

"So, Tommy," I said gathering my composure, "why don't you read the whole thing to me? It'll give you practice."

Because he couldn't hold the notebook steady, he flopped it on the table and read out loud. I followed with my eyes the way a person who pretends to know how to read music but doesn't know the difference between a whole note and a quarter-note.

Naturally I couldn't follow the reading much better than the writing, but was HE ever satisfied! It was worth suffering through every incomprehensible syllable. Later I had him painstakingly pronounce every word and I wrote it down myself. The piece was so touching I got it published in a college journal and later a church bulletin under the title, "Courage." From that first publication, Tommy was the star of Sugar Loaf. He was the only Resident in the long history of the Health Center ever to be published. And the man took advantage of it. Nay,exploitedit. He blatantly displayed his masterpiece to everyone who entered the facility. He read it so many times he memorized it --- he had to because the original became unrecognizably dog-eared and finger-stained. With that one work, Tommy MacInvey outshone every schizophrenic, paranoid, Down Syndrome, epileptic, alcoholic, brain damaged, mentally retarded, sex offender, and every other kind of dementia known to medical science and Sugar Loaf Health Center. And if the truth be known, it even outdid many of the so-called normal Staff and Administrators.

"I especially like the last paragraph," he stammered repeatedly. And every time he read the passage its poignancy made his audience nod and even cry. "More people should become acquainted with the mentally handicapped. Then they'd know they have hearts and souls just like them."

One day I felt full of sport so I challenged Tommy to a race. I jumped

into a wheelchair and said, "To the bathroom door?" You should know that only a few years before I had been a pole vaulter, so my arms and shoulders were not my weakest body parts. I figured my strategy was not to win but go slow enough to make the challenged men feel good. Was I surprised! For one thing, the only muscles this lifelong CP-er used were his shoulders and arms, and for another, Tommy took the goal to heart: he raced as if he HAD TO GET TO THE BATHROOM. The result was the single most humbling experience of my life. I honestly had to strain just to keep up.

As Tommy's parents aged they visited Sugar Loaf less frequently. It got to the point that he had to visit them. Once a month he would ride the special bus, spend the day, and return not tired as I expected but full of new vigor. Years before the parents entertained the child; now he took charge. I dropped him off once and was reminded of the saying, the blind leading the blind. The elders, enfeebled by age, were being catered to by a spastic whose arm muscles were so far off he'd sock himself in the eye with his toothbrush. But with what love he treated everyone! His deep, sensitive soul guided every intention and, regardless of how the house looked after he left, everyone was enriched by the son's visit.

When Tommy passed away, I was asked to give the eulogy. Most of the congregation was Tommy's Sugar Loaf peers, many more physically and mentally dehabilitated than he, which meant they spent much of the church time staring out the windows, at their belly buttons, or the boogers they'd snapped on the person in front of them. I was confident no one heard a word. But it didn't matter in the least as long as Tommy's departed soul did. And I know it did. Along with that twinkle from his good eye, I could see his gawking, drooling, impish face smiling as I said my final words ---hisfinal words: "More people should become acquainted with the

mentally handicapped. Then they'd know they have hearts and souls just like them."