I have known an AS sufferer all my adult life.
I first met him in the US Army in 1966. He didn't at that time know he had AS. At this same timeframe I also met his father, a man bent and hurting all the time. But his father conducted himself with quiet dignity and forbearance, remarkable for a man who had been debilitated for life by the "crush of a piano." A spine destroyed like that would have destroyed the spirit of any other man. It was many years later when I learned the real cause of his body-wracking pain and the major contributor to his eventual death - AS.
My friend and I went through the Army together, though often separated in assignments. He went to Germany and I went to Korea, but when it was over, we reconnected our friendship when finally and joyously I was discharged in Seattle. We have been life-long friends ever since. Curiously, I've lost touch will all my other Army buddies. Through the years since the Army we have been spatially distanced, sometimes great distances (my wife and I lived for five years in Saudi Arabia), and temporally distanced, up to 11 time zones! But we were never greater than an "e-mail" away, and always "connected" in the metaphysical sense of friendship.
He has been through hell in his half-century on this planet. As connected as our friendship was, he was living with AS disconnected from any other human's understanding of what was ravaging his body. That is, until he met his AS support group. Even I, his best friend, could contribute nothing to alleviate his suffering, other than to continue to recognize his fragility and courage in the face of a consuming onslaught I couldn't begin to fathom in its ultimate devastation. As deep as our friendship was the width of the chasm of pain, and his suffering was to be borne alone. This is not a failing of friendship; it is the solitary ship we each steer into the stormy waves of the ocean of life. We all want just one thing: the calm, man, we all want the calm. In the storm it is easier to aim for the calm with friends sailing beside. But no one can jump ship to another. We are, all of us, alone in that sense. And alone he was for too many years suffering. Our friendship notwithstanding.
One can't even call AS an accident of heredity, for it is too thoroughly programmed into the thread of descendancy to be a happenstance. A famous geneticist once said, and sadly, I can't attribute the quote, "People die, but genes live forever." This is so true, and so profound, and there are few words to emotionally summarize its importance for the human genetic constitution. The gene that robbed his father's life didn't die with his father and neither did it skip him, and he too went into the trough of depression, the morass of pain and despair, like his father before him. He too has borne it with dignity; but in a different way. His isn't an "accepting" dignity, it is more a searching dignity, looking for answers that finally are following from the efforts of directed studies of this crippling and devastating quality-of-life-sucking affliction.
So, what he has today, unlike his father, what he didn't have even five years ago, is knowledge. With knowledge of the disease, there is more understanding. Where there was only the experience of pain, now there is awareness of its causal mechanisms. Not knowing what was good for him or bad, what contributed to his health, what harmed him, he was lost in a wilderness where he had no control of the progression of the disease, only the dreaded experience of it. That is changed now. He has been able, armed with new knowledge, to take back control of his quality of life.
I am most grateful that my friend found all of you. It doesn't diminish our comradeship; to the contrary, he has found many more friends allied in the common struggle, the important cause, the aim toward the calm in his life. And I am selfish in this regard: by sharing his friendship with you, I will enjoy his friendship the longer.
In all the years I have known him, he seems now, more than ever, in the arms of hope. His letters are more upbeat, more joyful. He seems more lifted these days than even a year ago. It hasn't been easy. It has been difficult. It has been a heroic quest, fighting for his life, and for his love of it.
And to those of you who share the pain of AS, share the quest for the knowledge base, help to spread the "good thoughts," the "good foods," the science, the studies, the medical practices that work, the medical misinformation that doesn't work, and most of all, the hope of control of the disease, to all of you, I tip my hat and say a loud "BRAVO" for your good work. Keep it going in these WEB pages. You are helping many more than just my friend.