In honor of HS Awareness Month I am reposting a very moving article.  May we never forget the ones that have gone before us. 

Be forewarned - This is a tear jerker! 

"Teach Me, and I Will Be Silent; Make Me Understand How I Have
Erred." (Job 6:24)
[On Being a Doctor]
Seton, Margaret MD
http://www.annals.org/cgi/reprint/144/6/449.pdf

I would find him sitting in my examination room doing crossword
puzzles, book after book of crossword puzzles. There he would be, a
tall black man hunched over a difficult clue, gripping a dirty
pencil, the nib worn. His face was scarred, as if someone had taken
a woodcutter's tool and chiseled away at his skin- tunneling,
excavating, and then discarding. Under the heavy-lidded eyes, which
he would raise periodically with a "Do you really think so?" look,
he would talk to me about his life. He reported his arguments with a
neighboring tenant, his despair when the pain would recur, his
weariness with poverty, and his despondency over being
unemployable. "I don't know what I did wrong in life," he would say
with a smile.

"When I was 16," he said one day without looking up, "my face
started breaking out. "Bad thoughts," my mother would say. And I
thought that was the worst. That was called cystic acne. Have you
ever heard of it?" He shook his head, and looked up at me. "My
mother would scrub my face with coarse soap until it bled, and then
one day, she stopped. "You're doing something wrong,' she said." He
left his home in the South several years later. He didn't remember
when she died. He never knew his father.

Early in his twenties, he began to suffer from hidradenitis
suppurativa affecting the apocrine glands on the buttock, axillae,
and groin. His T-shirts became soiled by the weeping lesions and his
jeans stuck to his thighs. It became too painful for him to sit. He
had skin grafts to the buttock, the results of which were
disastrous. The wounds would not heal. He spent months in the
hospital prone. Incapacitated by pain, he was humiliated by his
exposed buttocks and his dependency. "The nurses get tired of you if
you don't get better, you know. They stop answering the call
button." He shook his head. "Now, why do people blame you when you
are the one suffering?" When he finally left the hospital, the
surgical wounds were just healing, as the skin on his posterior
thighs broke out in angry, weeping pustules.

I met him in 1996, when he was referred with polyarthritis and
pyoderma gangrenosum, superimposed on the hidradenitis suppurativa.
His wounds smelled purulent; his jeans and T-shirt were stained with
pus and blood where the lesions were active. His pant leg was cut
open so it didn't touch the taut, red, fluctuant mass of pyoderma
gangrenosum. He was unable to walk because of pain and unable to
bandage his wounds because of the arthritis in his hands. At the
time, I couldn't understand why he didn't want to come into the
hospital and was impatient. It wasn't until many years later that he
brought in the photographs taken of his buttocks after surgery. The
photographs showed a man who looked as if he had been flayed; the
buttocks were erythematous, with raw exposed muscle. "You don't
know," he said shaking his head, in his low, soft voice. "You just
don't know.".....and His angels He charges with error" (Job 4:18).

So many times he would miss an appointment. "Why do you do that?" I
would ask. With his sweet smile and six-foot frame, he would
answer, "I got other things to do. I take Mrs. Souza Friday for
chemotherapy when her daughter can't pick her up. She can't see.
That is worse than me. Now who's going to do that if I don't? You?"
Other days, when he had missed his appointment or wouldn't call back
after we left several messages on the phone, he would turn up,
crossword puzzle in hand, shaking his head and saying, "I don't know
what you're worried about. Nothing you have tried is helping. I'm
still the same."

Over the years, he was in and out of the hospital 2 more times. "Why
did you stop the medicine?" I asked him irritably. "It wasn't
working," he said. "It's not my fault." In 2002, mutations in the
CD2-binding protein 1 were identified as causative to a rare
disorder called familial recurrent arthritis and to an inflammatory
disease characterized by pyogenic sterile arthritis, pyoderma
gangrenosum, and acne (PAPA syndrome). The mechanism was postulated
to be a disruption of normal inflammatory cell signaling resulting
in enhanced neutrophil infiltration of skin and joints. I shared
some of this with him, suggesting new therapies might come from this
research. He shrugged at the information.

Finally, the pyoderma gangrenosum did not recur and the
polyarthritis resolved, but the hidradenitis waxed and waned,
refractory to treatment. He developed diabetes from the steroids,
and his hypertension worsened from cyclosporine. Surgery was not an
option. If there were good angels present in his life, the only ones
I saw were my nurses who found him lunch when he came to the clinic,
bought him new T-shirts for Christmas, and never failed to visit him
in the hospital, leaving crossword puzzle books by his bed and fresh
pencils. In the verses of the Book of Job (40:8), God asks
Job, "Will you condemn Me that you may be justified?" I know he
would have said, "No."

"The only time of the year I don't like is Christmas," he told me
once. "I just can't stand it. I get so down." He had no relatives
and mentioned no close friends over the years in the clinic. He was
found dead in his apartment December 30, a few days short of his
60th birthday. The summary of his death written by the medical
examiner noted a 59-year-old, African-American male who died of
myocardial infarction; comorbid conditions were smoking,
hypertension, and diabetes. Perhaps death certificates are not the
place to reflect on quality of life, but this captured so little of
the reality of his life and death. Surely his should have read, "...
now God has worn me out; he has made desolate all my company" (Job
16:7).

Margaret Seton, MD