Op Ed I#

A Few Cheery Words About Despair and Anxiety#

Feeling, ah, subdued today? Been through the rendering plant, strained through a sheet by the freaky flukes of fate? Well, now…

Despair is a perfectly reasonable response to your accident. Spinal cord injury is one of the crowning jewels of colossal bummers, psychologically and physically, and there is every reason for displeasure. Nor is it unreasonable if your body and mind deny the gravity or permanence of your injury. Why accept the unacceptable?

(There is even a cherished myth around the halls of rehabilitation that denial and mourning periods must precede successful adjustment. Statistical evidence refuses to support the idea, but glom onto it if it feels right to you.)

Despair is a word I use to describe an immediate emotional reaction. It is normally related to anger, and anger is an implacable force. Anger/despair is acute —it is so powerful that it overwhelms reason and intention. It’s strong stuff. It draws off so much energy that the mind and body reach a point where they can’t sustain the energy demand. Some breaker inside clicks, and it’s over. Not swept under the rug, but gone like a bad dream. The good news about despair is that, like an old shoe, it wears out. It burns itself out without damaging the host organism, which is you.

Since despair is a paper tiger, lacking the basic stamina to persist, you have the choice of waiting until it disappears or forging ahead with the sure knowledge that it will disappear.

The greater and more enduring problem, the one this book addresses, is anxiety about your future. Will I like my life? Can I live and love and laugh again? Can I get around, get aroused, get off, get a job, get satisfaction?

Apparently so. There’s evidence around (Trieschmann, pp. 49, 63) that, on average, SCI’s are no more depressed than AB’s. And that quads are no more depressed than paras. I think that’s interesting. More severe disabilities aren’t statistically connected with greater depression, lowered expectations, or decreased satisfaction with life. Hmm. Certainly the people in this book are not best characterized by their bitter dissatisfaction with life. All this leads me to the following speculation, entirely uncontaminated and unsubstantiated by scientific opinion, about happiness and unhappiness.

During the Crimean War, medical field camps divided new patients into three groups. The first group was those sure to die in spite of treatment, the second group was those who could and should be treated successfully and the third group was those so slightly injured that treatment was unnecessary. The middle group, of course, got all the medical attention. This division was called Triage and was performed by a Triage Officer.

The human mind has a Triage Officer of sorts. He assigns emotional and physical events to categories: good or bad, pleasant or painful, happy or unhappy. A large portion of our experience falls between the two extremes, and is automatically processed without much effort or recognition. The extremes, therefore, become the Officer’s preoccupation, so we might as well forget the middle category and call this mind process Duage. Hence, Duage Officer.

Now the mind’s Duage Officer is being asked to sort out happy from unhappy just as he did before the holocaust, the war, the accident. He’s supposed to report to the brain in no-nonsense computer talk. Yes/no, on/off, happy/unhappy. But he’s got a problem. The situation is changing fast and there no longer seem to be absolute guidelines for his assigned task.

It’s easy to see that there are no objective criteria for describing events and emotions as happy or unhappy. If you’re hungry, bread and water taste fine. If you’re broke, $5 is a lease on life. Men have written that they have only lived fully during times of horrifying war or oppression. Prisoners have found blessed miracles in dungeons. Childbirth is painful and rewarding. Moments of past danger become treasured anecdotes, and stress creates finest hours by the eon. If you’re healthy, a common cold is a catastrophe. If you’re paralyzed, a transfer is a triumph…

You can only go for so many days saying “It’s good today” or “It’s bad today” before you learn that your mind is incapable of consistently calling things good or bad.

Consider: Pleasure is what we like in life, and pain is what we dislike. Neither one is what we consistently get. Our circumstances vary dramatically. The only way the mind can cope with these fluctuations is to have a floating reference level. Homeostasis. There is no absolute definition of pleasure and pain. The definition is itself variable, and moves relative to other factors. That’s because the Duage Officer, who is a bureaucrat at heart, describes equal amounts of our experience as good, pleasant or happy, and as bad, painful or unhappy. He’s sort of simple-minded, and all he knows is that it’s his job to maintain equilibrium by shifting the pleasure/pain median to suit the altered circumstances. He wears blinders, like most bureaucrats, so he succeeds admirably.

Now the Duage Officer is a cute little guy, but he’s a little hard to take seriously. What can be taken seriously is the fact that we do, normally, spend equal amounts of energy on being happy and unhappy.

We all know high rollers who exult gloriously, and big losers who sulk miserably. They are the same person. We know middle-of-the-roaders who have very laid back responses to the vagaries of life. They seem incapable of great joy or great sorrow. The amplitude of the ups and downs will vary from person to person, time to time and circumstance to circumstance. But we all establish a threshold with pleasure and pain equally disposed on either side. Pleasure/pain homeostasis.

Your accident may have knocked your Duage Officer on his keester for awhile — bureaucrats aren’t noted for their great flexibility, only for being consistent — but he’ll re-establish himself in your new internal government because he’s needed and he’s good at his job. Besides, by now you know that happiness and unhappiness are two ends of the same stick. If you have one end, then you have access to the other.

Your circumstances have been rearranged and your pleasure/pain median will follow suit. This is not a defeatist lowering of expectations, but a mature adjustment to change. The point is that there is every reason to expect a complete return to the same appreciation of life that you once had.

Wasn’t it Edith Wharton who said that if only we stopped trying to be happy, we could have a pretty good time? She was no gimp.

“SCI alters life radically, but in some important ways life is not really changed. You’re going to face problems that may seem a lot tougher, but maybe aren’t a lot tougher, than everyone else has to face.”

—Don Scanlon

“It really changes your perspective. The one thing I really come back to is that I’ve gained an incredible sense of perspective. Different people’s realities; how relative the whole bit is. For that, I’m grateful.”

—John Galland

“You can look for the good and find it, or look for the bad and find it. I choose to look for the good because it’s much less depressing.”

—W. Mitchell

Higher Lesions and Higher Learning#

Now that your spinal cord has been tampered with, you may have decided against becoming a professional ball player, telephone lineman or stevedore. You have probably been told that the key to expanding your occupational options is MORE EDUCATION. The trouble is that if you’re paralyzed, if you never intended to go on to higher education, if you’re older than the student body at large, if you’re not much into books, if you don’t know which schools are accessible and have special services for disabled students, if you’re broke, if taking your brand new wheelchair into a college environment is scary, or all the above, then going to college can look like an endless fishladder of insurmountable hurdles.

Not so. One man, Professor Timothy J. Nugent, changed all that back in 1947. He had the then unfashionable notion that the severely disabled have the same aspirations, interests, talents and skills as anyone else and therefore have the right to higher education. Tim Nugent was a good fighter and a good con artist, then as now, and was instrumental in creating the Division of Rehabilitation-Education Services at the University of Illinois at Champaign. Since 1951, the University has averaged over 225 severely disabled full-time residential students each year, many of whom are represented in this book. Nugent’s ideas and programs have become widely accepted and schools which meet the needs of the disabled are now to be found just about everywhere.

Look in the bibliography to find access to information about schools which make an effort to help disabled students, then briefly transport your mind to one of these schools, the University of Arizona at Tucson.

Lots of people know that Tucson is a pretty pleasant place to visit. Not too many know that its University is a paradise for disabled students.

It’s partly the level ground, partly the easy climate, partly the accessible buildings, partly the sheer numbers of disabled students (300 disabled, 125 in chairs) and partly the wholesome attitude of both able bodied and disabled students who are constantly exposed to each other; these things all appeal about the place. But mainly, it’s the efforts of the Office for Special Services for Disabled Students, which will do the following things and more for disabled students who ask:

  • Provide all necessary help for entrance examinations, admission and registration

  • Direct students to sources of financial aid

  • Recruit readers, writers, interpreters and wheelchair pushers

  • Recruit and train attendants

  • Assist in finding suitable housing

  • Repair wheelchairs and other devices through their Mobility Repair Service

  • Provide career, personal, group and academic counseling

  • Act as student’s advocate with the State Department of Rehabilitation

The results of the program are amazing. There are so many wheelchairs circulating on campus that they are part of the scenery. And every chair that blends into the student body creates dozens of able bodied students who see people instead of chairs. This place is a sure cure for a gimp’s feeling out of place and a sure cure for a normie feeling awkward around a wheelchair. And seeing this school, or any of many like it, would be a sure cure for any fears you may have about going to college. And all of this is why this preamble precedes the following section introduced by Gene Tchida, one of the main architects of the University of Arizona program.