Affliction: Another influential person in my life -- Stanley Stein

"If the disease breaks out all over his skin and, so far as the priest can see, it covers all the skin of the infected person from head to foot, the priest is to examine him, and if the disease has covered his whole body, he shall pronounce that person clean. Since it has all turned white, he is clean. But whenever raw flesh appears on him, he will be unclean. When the priest sees the raw flesh, he shall pronounce him unclean. The raw flesh is unclean; he has an infectious disease. Should the raw flesh change and turn white, he must go to the priest. The priest is to examine him, and if the sores have turned white, the priest shall pronounce the infected person clean; then he will be clean." Lev 13:12-17

Once I had an inspirational friend who I never met. I only knew him through letters (this was before email). I didn't even know his real name until sometime after he died. He was Sidney Maurice Levyson, but I only knew him as Stanley Stein, as did the world at that time. It was amazing he was known at all. He was considered a leper. Leprosy was greatly misunderstood and probably still is. The real name for the disease is Hansen's Disease and as horrid as the affliction can be, it is not as infectious as once thought. Most of our knowledge of this disease comes from popular presentation of Bible stories where lepers were normally portrayed wrapped in bandages and crawling out of caves.

When Stanley Stein was diagnosed with the disease, he was immediately removed from society and incarcerated (there is no better word for it) in the Carville Hospital in Louisiana. Not only did he lose his home and family, he even lost his name. He choose his pseudonym to be known by more than a number.

But Stanley didn't disappear quietly into the netherworld of pariahs. He began a newspaper called "Star 66", of which I was once a subscriber. He didn't stop there. he also wrote a book about his life entitled, Alone No Longer. As a young man I read that book and wrote to Mr. Stein and we carried on a correspondence for awhile after that.

TO STANLEY STEIN

You have me in a cave as to save from the grave
YOU from my infection,
Because of a pale blemish that’s diminished the finish
Of my complexion.
I don’t know why this land to a man wants to ban
Me, a tainted fixation.

And don’t call me that word anymore, you’ve
Given me swampland barless prison blues.

You won’t allow me a wife or a life in the strife
Of my growing pockery.
And you put me down in the ground away from town
Under guard, lock and key,
Then you turn tail and run and you shun me, and son,
YOU call this democracy?

And don’t call me that word any more, you’ve
Given me swampland barless prison blues.

And your preachers preach the gospel
And they turn the people rather hostile
Then they collect for the hospital.
YOU call that Christianity?

And every gift that you give me
Is sterilized just to rib me
While you say you want to live. Gee!
YOU do that unanimously.

Then YOU wash your hands off
After waving me to please stand off.
After you’ve burned all the land off
YOU leave me anonymously.

While YOU go back home with your own all alone
Whispering where you’ve been,
Then YOU gasp at the rot at this spot and allow how
We aren’t owning much skin.
After which you sit back and get slack with a snack and
Go back asleep again.

And don’t call me that word any more, you’ve
Given me swampland barless prison blues.

There was a reason I was drawn to Stanley Stein. If he and I had lived in Biblical times, we both would have been visiting the priest about skin diseases. We may have both been branded as lepers in those times and shunned by our community, even though my own affliction is not as serious as his. I have the "heartbreak of psoriasis". It covers most of my body. It is not normally dangerous and it is not at all contagious. Basically it is just ugly, although sometimes it itches and sometimes it hurts, like a bad sunburn.
I first was diagnosis when I was 15, although I am certain I had it several years earlier. There were comic circumstances to the discovery. I was sitting on a hammock with a girl (young sister of a friend) and we lost our balance and were dumped to the ground. She landed upon my face and I bounced up in fear my glasses might be shattered and my eyes might get cut. It was a hot late spring day and we were in bathing suits. When I leaped up to feel my glasses, she asked about a rash on my underarm.
I looked and sure enough, there was this red ring around my armpit. We had just been studying "social diseases" in health class at school and I immediately jumped to the conclusion I had a 'social disease". This was how naive and innocent the times were. Why should I have any of the diseases talked about in that class? I was a virgin. I had never had sex of any kind with anyone. And what would it have been to get a "social disease" in my armpit? Nonetheless, I feared the worse and hid this blemish from my parents.
My grandfather spotted a white splotch on my elbow during a visit to his home shortly thereafter and took me to a dermatologist. It was psoriasis. The doctor gave me a cream that was gray and smelled like a telephone pole. I rubbed this on the splotch and the rash and they cleared up. But soon another splotch appeared on another body part. It was a losing battle and the splotches were small and often cleared up on their own.
I didn't even think about it as a young man. Then came the Vietnam War. Lyndon Johnson was president and the war was not going well. he lifted the deferment on married men and I got the letter to report for a physical. At the last stage one of the doctors asked, "what is that on your shoulder?" I hadn't been aware of anything on my shoulder, but when I stretched my neck to see, there was a tiny white splotch. This was the only blemish upon me at that particular moment, but it kept me out of Vietnam. I was classified as 1-Y. This meant I was fit to serve, except only if they needed to scrap the bottom of the barrel. I guess they never got to the barrel bottom because I was never called up.
The disease continued to be an occasional spot of white or patch of red until I reached my forties, then it spread like wildfire. It covered me, but only beneath my clothing. As long as I kept my shirt on, I appeared normal.
I went to another dermatologist. He took one look at my condition and his eyes lit up. He told me of a new experimental treatment, which he wanted to try and then had me strip naked to take pictures. I could see what he was thinking. If he cured me with this new treatment, he'd be in the medical magazines, maybe even write a book and I'd be in there too, in all my naked glory.
I never went back after that initial visit.
But then in my late forties, it spread to my face. I sought out yet another dermatologist and he gave me light treatments. Three times a week I had to go to his offices. A nurse would take me to a back room, where I would strip naked and step into this big box. There was a little window in the door. Inside the four walls were lined with lights. I would stand -- nude -- upon this little stool in these lights. It started with a couple of minutes, but eventually worked up to a half hour. I invented games to occupy my mind. I would stand facing the door for so many counts, then turn left on my little stool for so many, then face the rear of the cabinet so many more and so on.
This went on until I received the doctor bill and discovered what he charged for those light treatments. (Medical insurance didn't pay for it in those days, they classified psoriasis treatment as cosmetic.) But tanning salons were just gaining popularity, so I went to one and for $10 not only got a light treatment, but could lay in a bed (that looked like a giant waffle iron) and listen to music.
The blotches did all go away, but after a period returned. I ignored it this time. But the scales became thicker and soon I was in pain. It hurt to turn a doorknob. I would make a fist and the skin would break and bleed.
To a new dermatologist I went. I had developed an extreme case, one which was now life threatening because my skin couldn't breathe properly. Fortunately, the insurance companies now did cover treatment. I was back to standing naked it light boxes, but they had advanced as well. They were now a sleek chamber that looked like something out of Star Trek and you did not have to be cooked as long.
The light box was not the only thing I was subjected to. I was given several ointments and lotions I had to apply at different times of day. I was to take three baths a day and then sit for twenty minutes slathered with a cream. This was not easy when you work. Once my condition was controlled, I stopped all of this and have just lived as I am since.
Very few people have even commented to me about it. Those who have usually mistake my situation as poison ivy. In Florida in 1984, though, I was approaching the elevator bank of a hotel where a man was waiting. He saw me and ran down the corridor screaming, "what do you have? What do you have?" I was tempted to pursue and embrace him and say, 'I don't know, but now you have it too." I didn't. I wouldn't be mean that way.
It is interesting to me that society has overstated the danger of Hansen's Disease to the point they use to lock people away and they have reduced psoriasis to a joke. Although there is no comparison to the seriousness of Hansen's with psoriasis, the one should not cause the panic it has and the other can be more serious than a punch line.
Stanley Stein is gone now. He was born the same year as my late grandmother, 1899. I remain afflicted with my patches and splotches. But in all, I adapt and I adopt Stanley Stein's credo:

“People sometimes ask me if I have a philosophy of life. I do. I subscribe to the concept embraced by Evelyn Wells in her meaningful book, ‘Life Starts Today.’ I try and make the best of each day, not grieving over yesterday, and not being too concerned over what may happen tomorrow. To me, ‘eternity is the moment.”
“Instead of bemoaning the things that I have lost, I try to make the most of what I have left. In his essay on Compensation, Emerson says, “For everything you have missed, you have gained something else.”

"To Stanley Stein" was written by Nitewrit in 1968. It was performed on March 13, 2004 at Franco's at 4W5 by the author. The photograph and quote of Stanley Stein was taken from "Searching for Stanley Stein" by Jerry Klinger, Jewish Magazine July 2007. I have provided a link to the article in my link section.