This is about my friend Peter Brayman.
Pete grew up in a small rural town in New York. He was a New York State firefighter EMT, an amateur radio operator, a graduate of SUNY Buffalo, and a computer nerd. It was in that last capacity that we met. We were both “Guides” on America Online, a half-paid half-job, half cop and half tech support. Pete and I hit it off immediately. We shared ham radio, computer nerding, and medical jobs. Partly because of the medical background we shared also a dark, dark sense of humor: the slang of those who see death and injury, the shocking little jokes, the deadly funny banana-peel stories
We were close friends for years. We spoke daily, sometimes almost all day over instant messaging. After our AOL activity, we went into parallel careers connected to the Internet and its technologies. We helped each other out learning new things, gave each other tips and leads, hosted each others’ projects. I can think of at least five running gags that we shared over the years that no other person on Earth would have appreciated.
Our closeness was deepened by our differences. I am verbal, a natural writer, knowledgeable about many varied things, judgmental, snobbish, hypercritical of myself and others, and sexually frustrated. Pete was a terrible speller, very focused in his education, tolerant, accepting of others’ faults, and successful with women. Our politics differed, but he listened politely to my little rants and never offered anything in response but what we shared. Especially in those days I flew into little rages too often, and his anger was rare and not much spoken.
Pete died too young, three years ago today. He left a fiancée, a beloved uncle, some good friends, and me. It’s a cliché to say that you think often of someone who’s died, but it’s true in this case. Frequently I want to share something with him, or think of something he’d say right now.
So far, so conventional. Why am I writing an everyday story of an everyday life?
There’s something else about Pete that everyone noticed first. He was born with a dreadful disease called Neurofibromatosis-2. This causes tumors to grow on nerves and is uniformly fatal. From childhood he knew that he was permanently ill and that this could not get better. Since his mother was affected with the same disease, he could see his future in real time.
Pete had occasional surgeries his entire life, ranging from a trim of some lump on an extremity to invasive brain surgery. He lost mobility, became deaf, lost use of a hand, and suffered through another hundred failures of the flesh. Because of deafness and the effect of the disease on his appearance he appeared to be mentally handicapped and was treated as such. Past a certain point in the process he was clearly in discomfort all the time.
Because he was on full disability, he could not work full time, although he had a successful consulting business. Too much success and he would lose his medical benefits and therefore die. Survival required subtle skill with government paperwork. As with other handicapped people he had to fight every social obstacle to those with mobility and hearing problems.
On top of all this, Pete had a family that was unworthy of him. I won’t go into details, because he wouldn’t, but I am to this day gravely disappointed in everyone except his uncle, who is a fine man.
Now here’s the thing: Pete lived an ordinary life.
He achieved as an EMT and a college graduate. He worked hard and well at a technical profession. He dated a few women and was engaged to a wonderful one. He had moderate conservative politics and moderate religious views. He liked ice cream and loved Disneyland. He was proud of being a firefighter and embarrassed at his bad spelling. He was, unlike all my other friends, a moderate and ordinary man who sought out and led an uncomplicated life.
How the hell did he do that?
His attitude toward life’s giant sack of bad luck was perfectly sane. He didn’t deny the disease or pretend to others that it was okay. Everything about it was monstrously unfair and awful; it hurt; it made him feel different and separated from others; it frightened him. There wasn’t any sentimental heroism in Pete. He didn’t give out false hope or encourage others to do so. When he was frustrated or scared or in pain he would talk about it honestly.
Somehow he also avoided making the disease his life. A typical conversation with Pete was honestly about ice cream or car crashes or the hilarity of AOL management without any bit of that awful darkness leaking through. He was genuinely sympathetic to my own life problems. Pete never pulled the “my life is worse” card even though perfectly entitled to do so. He would help others and do nice things for his fiancée in the manner of any other guy with good values.
Despite a ridiculously awful childhood, a loathsome and deadly progressive disease, social barriers, and every bit of crap luck that goes with any other person’s life, Pete was an ordinary guy with a good heart. His natural resilience made you forget in a moment that you were talking to someone this profoundly unfortunate; it was just Pete. It wasn’t heroic, or some feat of overcoming to be patronized by the sentimental, or a great success at denial. He recognized and acknowledged the huge disaster and at once led a life that paid no rent to Death.
Pete just wanted a regular life, and he worked harder to get one that anyone I’ve known. I won’t insult him with a romantic picture of his life and say that he won. The disease won and tortured him to death in his youth. But here’s what he knew: a terrible misfortune is no reason to turn your life upside down.
So here’s to Peter Brayman, an ordinary guy and a great friend. May we all come this close to winning.
reposted from Be My Blog