The curtain parts and the academy audience is stunned to see Christopher Reeve, who is still Superman in the minds many, sitting center stage in a wheelchair. He speaks with bravery and with gratitude for the kindness of others. That moment is electrifying. There is little doubt that this kind of courage is socially acceptable. At the risk of being a wet blanket, one might also ask if the moment is complete.

When viewing another human in a terrible plight, the moment is not complete unless the observers take positive action to alleviate the condition. A complete moment for Mr. Reeve might well involve an adequately funded public mandate to find the means to regrow nerve cells. Emotional support is limited in its ability to effect a solution. True compassion is to help the patient get well. Although gratified at the acceptance the audience has displayed, there must be playing in the background the sincere and entirely human feeling that an ounce of cure would be worth a pound of acceptance. There is a story by Tolstoy about the rich woman who sits weeping at a sad play while her driver, poorly clad, freezes to death outside while waiting for her atop the carriage.

Determination is to solution what curiosity is to search. We must be glad that what is displayed at scientific pain meetings is not compassion, but determination. It is the determination one sees when a body undertakes to bridge a difficult gorge or dig a canal across the Gulf of Panama. The idea is not so much compassion for the inconvenience of travelers, as it is the determination to accomplish a task. Pain patients must realize that however much their heart needs compassion, if they really want a cure, they must learn determination.

When the disease is invisible and indescribable, there is no wheelchair by which to signal the need for public help. There are no props, nor any visual clues at all that action on the part of the observer is indicated. Therefore, the development of determination to solve Central Pain may rest on activity which is not socially acceptable. This may mean sacrificing the needed public compassion which socially acceptable behavior potentially brings, for grudging accommodation to a door that continues to squeak until it gets some grease.

Because the public cannot see nor understand Central Pain, there must of necessity be some aggressiveness by the patients, if we expect to see allocation of funds for research. This is more likely to result from becoming a thorn in society's side than by displaying the extreme courtesy and bravery which might win us the respect of the public for our courage. The ultimate conclusion of all this, is that we who feel like dying due to our suffering must exert pressure on politicians to fund basic pain research.

Beyond doubt, the effort to win political and public support will involve convincing sufficient numbers of our friends, relatives, and associates to make plain their support for a national priority for pain research. Because the disease is invisible, it means making demands, rather than displaying courtesy to those around. Now to be sure, there is a limit to what agitation and commotion can produce, but it is very likely society will need to feel a sore in itself before it will administer salve to the individual. And so we come to pain activism. Because there is no cure for Central Pain, rather than a fruitless odyssey from one pain clinic to another, our resources are better directed at raising public awareness. Is this always done politely?

No. The most effective efforts to raise public awareness more often involve facing the blast of skepticism and resentment graciously but resolutely. This is simply not a matter of social acceptability. It involves activity which some will view as socially unacceptable. Such activism involves demanding help for an invisible problem. The public will not thank you for reminding them of yet another obligation on their part, but in the end, they will have been made a better society for having been "forced" to reach out and help. Like going through the labor of birth, the public will find that in solving pain, the birth of a glorious new era for mankind. They will find an accomplishment at which the world can momentarily unveil its face of shame for past inhumanities, and shout a cry of gratitude and celebration of liberating victory. They can rejoice over the death of a terrible tyrant, which can never again offer its certain brand of terror.  A new kind of freedom will ring through the air. Mankind will have deposed its "most terrible lord", as Schweitzer called pain. 

Determination can stem from many sources, but curiosity and challenge are, ironically, better motivators than compassion. The successful scientist in his lab generally feels an overwhelming drive to discover, rather than necessarily an overwhelming compassion. The pain scientist may actually feel more compassion for his lab animals, who are unwilling participants in the fight against pain, than he does for the suffering human, out in the world somewhere. This is inevitable, and therefore, probably as it should be. We do not want our hand held. We want the pain to stop. And so, we must follow in the footsteps of other activists. The Declaration of Independence was itself activism, and its signers paid a terrible price in the retaliations the brought upon themselves from the existing power. We must prepare for resentment, ridicule, and punishment. The public does not know of this disease. We cannot wait for them to acquire knowledge of it. We must insist on help now. Dogged pushing for help will precede understanding and shorten the route to a cure.  Pain will be cured only if we are prepared to throw some bundles of "tea" over the side of ships and develop a rallying cry like "No taxation without representation".

There have been some rallying cries suggested for Central Pain patients, but no one has really galvanized the mind. We await your input. Some ideas include:

• "Patients dying in pain are not addicts"
• "No more money for missiles while patients are dying of pain"
• "Science for humans before science for space. Stop Chronic Pain."
• "At least Kevorkian has found one way to stop unbearable pain. Are you working for a better way?"

What is important for Central Pain patients is to remember what they are trying to accomplish. If you are trying to talk to people or maintain relationships, the rules have not changed because you have pain. If you need validation and warmth, you must remember the principles of human relations. You must make others feel important and appreciated if you wish to obtain their good will. Your severe pain does not change that.

In your relations with spouse, family, and friends, courtesy and harmony are vital in maintaining their support. Because you are in pain, you will not be able to relate as you really are. It is always disturbing not to behave as our authentic self, but for your own sake, because you need acceptance from others, this must be obtained not by a revelation of your suffering, but by basic rules of influencing others.

It is something along the lines of the apostle Paul's counsel to be "all things to all people". This is nearly impossible if you are by necessity, informing others about a terrible disease for which you need help. It may sound strange, but you will find the following true, and you may put it to the test. With one person, let yourself go. Break into weeping and sobbing and a long and terrible recounting of your intractable pain, and see how much has been taken from your life. You will find they avoid you assiduously. Few can handle such emotion, even if they are begin paid to do so. With the next person, put a smile on your face, ask them about their problems, and then mention you have Central Pain and are trying to get people to write letters to congress. I predict that all letters actually sent will originate from the second kind of experience.

I admit I feel like a silly monkey sitting with a smile on my face, politely telling people that I am in unbearable pain, but such forced courtesy allows me to find a square peg which will fit into the round hole. It opens people's minds far more than a pathetic grab for attention. A person who is dying of pain but talking quietly and politely about it feels like someone at a dance whose pants are on fire, trying to carry on appearances to his attractive date, until the dance is over. But it must be done

Because we are on a rapidly moving train and non-Central Pain listeners are standing still and most probably hearing about Central Pain for the first time, there is a huge gap in the relative positions as to pain. To avoid a casualty in the personal encounter by jerking them suddenly up to speed, we must use a measured and polite approach.

Admittedly, there is something unreal and even comical about politely telling neighbors, "Yes, Central Pain is the most painful condition known to man, and I have it, so I appreciate your sitting here talking to me about it." You would like to prostrate yourself at their feet and beg for help, but it just doesn't work. The awful desperation you feel can seem like a starving inmate in a concentration camp politely asking a guard for a crust of bread; yet, such inmates know a courteous approach is more likely to bring results than a pathetic cry or an abusive accusation hurled at the indifferent observer. 

You may ask how this can be reconciled with the above remarks about pain activism. I answer that activism pertains to the public at large, which requires stiff and blunt messages. By contrast, individual contacts require different types of communication. Pain patients need to become skillful at both types of communication. We must stop weeping before our friends even as we begin wailing before the public.

Severe pain is exhausting. This level of involvement seems impossible when we wish to die rather than get involved, but we owe it to ourselves and Central Pain patients who come after us, to begin this fight. We must fight on every front, write to every congressman, petition every medical body, write "crackpot" letters to every newspaper, put up posters where they will be seen, grab the attention of every media source, and pray every prayer. Like a lion in public, and like a lamb in private.