From: "Pope, Karen O." <POPEKJ@uwec.edu> Date: Tue, 24 Apr 2007 10:21:54 -0500 Subject: FW: Invitation from Asha: Eberth Alarcon memorial peace & justice lecture series Message-ID: <4F19260FE7477F4DA03B00B62E7F63903771E77418@CHERRYPEPSI.uwec.edu>
Excuse if this is a duplicate message but it is a very important one for SF
PJ to read.
Please attend: SFPJ meeting 4:30 May 10 Arrowhead room
______________________________________________
From: Sen, Asha
Sent: Sunday, April 22, 2007 3:53 PM
To: Pope, Karen O.
Subject: FW: Invitation from Asha: Eberth Alarcon memorial peace &
justice lecture series
Importance: High
Dear SFPJers,
I've talked with some of you about the possibility of starting an Eberth Al
arcon lecture series that would be housed in different programs/depts every
year. SFPJ could potentially host the first one -- Eberth said to Theresa
Kemp a week before he died that he would like it if SFPJ started up again.
And it would mean a lot to me if the first SFPJ event might be a lecture
in commemoration of Eberth -- something that would tie his incredibly beaut
iful life to the horrible suffering he went through during the last six mon
ths of his life. Eberth gave of his time and energy unstintingly to causes
that were of little personal benefit to him, and if SFPJ could host a lect
ure series committed to telling the story of the last six months of his lif
e, that would mean a lot to me.
I am inviting you all to attend the screening of the student film EBERTHIAN
on May 7 in Davies Theater at 7 pm. And then to a meeting in the Arrowhea
d Room on Thursday May 10th at 4.30 pm to talk about about the first SFPJ l
ecture series.
Here are some of the issues that Eberth and I faced in the last year:
The complete lack of information about AML and M7 (what Eberth died
of). It still baffles my mind that Eberth could turn 40 and receive a dea
th sentence and that none of the medical workers at Sacred Heart or at the
U of M could give me much information about his illness except that it was
fatal. I actually got more information from Crispin Pierce on our campus t
han I did from any of the medical experts. There needs to be more informat
ion available out there about the environmental causes of AML (benzene is a
pparently a big one) as well as the extent to which AML may be more prevale
nt among certain classes and races. We also need to work towards preventat
ive measures --early testing -- rather than cures that kill. Eberth was ca
ncer free at the time of his death but he was killed by the treatment.
Patient advocacy -- as an immigrant woman from India (who came over
as an adult and does not have any family of her own in this country) I fou
nd it impossible to advocate for Eberth (a brown man who also his life incl
uding the last six months of it has suffered from being seen as an illitera
te and threatening Mexican illegal). My concerns were always dismissed and
I was seen as harassing and hysterical. It would be really useful to lear
n more about patient advocacy particularly patient advocacy for minorities
that are doubly disadvantaged.
Here are some of the injustices Eberth faced:
More attentive care:
The nurses on the night shift are all floaters from other departmen
ts who aren't familiar with the procedures of the BMT department at the uni
versity.
The nurse on duty the night Eberth died had never worked with him before.
Nurses are slow to respond. And doctors are so specialized that I'm not su
re that there is much information sharing. Eberth finally died of lung fai
lure (interestingly enough, he said he could feel the blood in his lungs an
d was worried about a second intubation hours before the medical staff dete
cted the blood and intubated him). When I asked the lung specialist why th
ey had not responded more quickly to Eberth's complaints about the blood in
his lungs, he brushed off my concerns but also said that he had not been f
ollowing Eberth's case. And this despite the fact that we were warned all
along that Eberth's lungs might give during the protocol and that the first
intubation was due to potential lung failure.
Eberth had hard bones: And while his local oncologist at Sacred He
art performed his bone marrow biopsies with him suffering minimal discomfor
t, two of the people who extracted his bone marrow at Minnesota didn't have
the strength (the first was a woman -- and while I'm all for feminism -- s
he herself kept complaining about his hard bones but also refused to call i
n her male partner) and the other appeared to be a novice doing his first b
iopsy. Needless to say, Eberth suffered agonies at the hands of both. And
this despite my telling doctors, nurses and social workers that my husband
had hard bones and needed to have biopsies performed by people with experi
ence and strength.
Cultural biases towards illness, death and dying:
We need to be able to advocate and care for those we love instead o
f just abandoning them to the medical experts. The nurses at Minnesota wer
e all surprised by the fact that I stayed by Eberth's bedside all the time.
Most families just leave their loved ones in the hospital and visit them
on occasion. I wonder how many patients die because of human error or medi
cal neglect. We also need to abandon idealistic notions about "positive th
inking" and "death with dignity." When he didn't go into remission, Eberth
said to me, "Sweetie, this positive thinking puts too much pressure on the
patient. I wanted to go into remission. I did my best to go into remissi
on. I shouldn't have to feel guilty about not being positive enough." Ebe
rth's body suffered every kind of atrocity possible -- he was experimented
on for six months -- night after night I would hear the screams of BMT pati
ents crying in agony. The fact that Eberth managed to keep his mind, heart
, and spirit relatively intact is a testimony to his greatness. There was
one night when he was screaming with pain because his blood pressure cuff w
as on too tight; the nurse got hysterical and said she would never work wit
h him again. Eberth apologized to her for his behavior and tried to explai
n to her that she should not take it personally. Needless to say, nothing
was done about the cuff.
This is just the tip of the iceberg.
I could go on and on about insurance problems, the price of drugs,
the paucity of minority donors etc. etc. Anyway, those of you interested in
helping put together some kind of SFPJ memorial lecture to Eberth in the f
all (something that would connect his life to the social factors pertaining
to his illness and death), please contact Karen Pope. I'd like to announc
e the lecture series at the May 7th screening of the student film on Eberth
.
Thanks,
Asha Sen, PhD
Associate Professor
Dept. of English
University of Wisconsin-Eau Claire
Eau Claire, WI 54702
Office Phone: 715 836 2732
Email: sena@uwec.edu