Written by Henry Hof 3rd (in 2007) for the Fiftieth Reunion
One of the symptoms of primary lateral sclerosis, a vexing one, is slurred speech. Pre-PLS, I could schmooze in Spanish with co-workers, affecting a reasonable accent. But with the central nervous system compromised, a foreign tongue sounds labored. I could no longer trill the double R sound, nor manage a mellifluous word like ferrocarril. Muscles of the mouth were sluggish, as if on strike.
Until 1982, my self-image had been one of a physically fit man with a worthy cause: delivering development aid for countries from Afghanistan to Zimbabwe. As program management officer, my mandate was to carry out approved activities on schedule. How to do that, I fretted, if I myself was flawed, no longer able to project confidence and competence? Still active in sports, I saw myself as a blend of accomplished athlete and competent bureaucrat, twin pillars of my identity. But with an incurable, untreatable condition, the outlook for both parts of the persona appeared bleak. No more sky hooks or rainbow jump shots. No more sharp volleys or overhead slams. I feared how friends, family and officemates would react to me as handicapped Henry.
My job performance as a program officer was in peril. I withdrew at work, the office a cave. I avoided face-to-face meetings, shunned the phone, while processing papers from In to Out box. In retrospect, I was not unlike Jonathan Swift’s immobilized Gulliver (made meaningful in the classroom by Professor John Hurd), in a position to help mankind, but shackled by ever-tightening physical restraints.
I came to realize, though, to my relief, that colleagues and companions were accepting of me despite the disabilities. They showed genuine concern for my physical welfare, with no hint of patronizing. Wah-hoo-waw for the underdog! The United Nations doctor advised me to take afternoon siestas at the clinic, something I had thought only permitted for the pregnant, so as to recuperate faster from cervical laminectomy surgery. Meetings were scheduled in venues easy to access, many in my own office. As personal computers came into use during the 1980s, I was encouraged to requisition a laptop with simulated speech synthesizer. By then, my conversational communication, whether in English, Spanish or an occasional try at French, was hard to understand.
I became the go-to guy for issues of disability, the task compatible with my job description. From the Secretary-General’s office I was referred incoming correspondence dealing with the world’s disabled: the blind, deaf, mute, or, like me, unable to perambulate. I conferred with dozens of people, some more disabled than I, engaged to improve conditions for individuals with disabilities. A highlight occurred when I was welcomed to the Great Hall of the People in Beijing as part of a United Nations mission to China. I found the role cathartic. I came to identify with the planet’s estimated quarter billion people who are classified as disabled. In contrast to my main responsibility working with impoverished people, I was now a part of the client group. I only wish I could have achieved more for our community; For instance, by facilitating the building of wheelchairs in poor countries by prospective riders themselves.
In this connection a particularly effective non-governmental organization with whom I remain associated is one based in California at San Francisco State University. Whirlwind Wheelchair International offers technical services to physically impaired individuals in need who might otherwise be unable to move around. In dire cases the lame and the halt (to borrow a Biblical phrase) have very limited means of mobility, cannot work, can hardly socialize, being closeted away as shut-ins, by circumstances beyond their control forced to crawl on the floor. WWI addresses these challenges head-on, as summarized in their mission statement: “Whirlwind designs wheelchairs for production and use in developing countries to empower people with disabilities through independent mobility and sustainable economic development.” Further information can be obtained by visiting WWI’s wonderful website at www.whirlwindwheelchair.org.
In retirement since 1997, I rarely go to bed without wishing I had accomplished more during the day. Either I’m writing my children, other family and friends, or I’m staying abreast of current events including stock markets worldwide. Among my unrealized goals in life is one that Coach Al McGuire announced candidly sometime after his two year coaching stay in Hanover from 1954 to 1956: To be a millionaire. (His aim is confirmed on page 4 of a very readable paperback, You Can Call Me Al by Joseph Moran, Prairie Oak Press, Madison, Wisconsin, second edition, 2001.) Though I have tried to be a savvy amateur investor, availing of direct experience with governments around the world, my returns on capital have been unremarkable, a decade of spinning wheels. Perhaps it’s the price one pays for having preferred novels as an undergraduate over Samuelson.
I stay content with other achievements, albeit scaled down. Just as mentor McGuire had unusual characteristics, I strive for so-called drop-free days; That is, daily activities during which I commit no errors, turnovers, fumbles, spills, or clothing stains. That may sound insignificant, while some of our classmates were campaigning for the governor of New York or adjudicating monopoly allegations against Microsoft. But the quirk suits me, avoiding having to fetch for elusive objects, or flagrantly worse, having to help clean up an upended urinal. My all-time record of consecutive drop-free days, attained in 2006, is nine (9).
All in all, though the transition was traumatic, I’ve adapted to the second self that I’ve become, which is as happy, and sometimes sad, as the first. In my youth, as already stated, a key element was enhanced education. In my later life, the cardinal variable has been my wife, reliably there for me in so many ways, supportive physically and figuratively. I also appreciate that I am fortunate from a medical point of view. As a doctor told me during a discussion about being disabled but not sick, “Statistically, you’re one in a million.” In a metaphorical sense, it’s as if I somehow took our Dartmouth College Winter Song literally: “with the granite of New Hampshire in his muscles and his brain.” For me, a Get Well card has long been inappropriate. I’m not ill. At seventy, I remain myself: disABLED and still on a roll.