kearns to LA city council: life with my HIV/AIDS-related dementia (long play) (0077)

20090402_115107_city_council_richard_kearns_200[tuesday, october 6, 2009] good morning
president garcetti, distinguished council
members. i have given the clerk copies of my
prepared remarks.

my name is richard kearns. i am a 58-year-old
gay man living with AIDS in los angeles for more
than 20 years, a long-term survivor & AIDS
activist. i have just started a new advocacy
website, in cooperation with the LA city AIDS
coordinator’s office, called HAVVACC, the
HIV/AIDS volunteer assisted care community.

last week i talked with you about the co-
morbidities & frailties i battle as a result of — not
only
AIDS but also the medicines that treat it
without curing it. today i want to take that
journey a little farther & talk about my “cognitive
impairments”:
i am diagnosed with AIDS
related dementia
& the senile gait disturbance
that often accompanies it. [stooped posture,
knees and hips bent. arm swinging lessened.
stiffness in turning. small & broad-based steps]

AIDS-related dementia. it’s a pretty scary
prospect.

at its worst, at the end of 2003 when i had only
13 t-cells (which is bad), i lost 2 cars over a 6
week period
in a nearby shopping mall parking
lot (a labyrinthine thing, not unlike the westside
pavillion). the 2nd was a rental car i obtained
when, after a week, i couldn’t find the first. i just
thought i was tired.

at the same time, during that period, i still made
it to all my medical appointments, which were
numerous, & still helped the terminal cancer
patient with whom i lived get to her
appointments, & cooked & helped clean &
shopped for us pretty well.

[today, i have trouble with smaller things like
names & phone numbers & pin numbers & i get
lost easily, but generally i’m pretty grounded. i
take the bus, though. & my cell phone]

but i know a number of persons with AIDS
(PWAs) whose dementia is, like mine is today —
in remission. its appearance appears to be
inversely related to t-cell levels. similar to KS,
karposi’s sarcoma, an AIDS-defining skin cancer
from the old days which vanished in many PWAs
after the introduction of protease inhibitors (my
boyfriend was one).

& that’s what’s also so unusual about all these
comorbidities & frailties: they’re like aging, but
not exactly. there is something about AIDS that
sends all our bodies’ different time clocks
spinning at different rates, & parts of you age
more quickly than other parts. sometimes some
things reverse themselves. but you still age more
quickly than the population with whom you live.

it’s a war that can’t be won, though.

i will close with a quick story. ted kennedy asked
ryan white: “what can we do for you?” ryan
answered: “help other kids.”

that, i believe, exemplifies the spirit of AIDS
activism. let’s work together to help those who
will follow.

i will be back next week with more from
HAVVACC, the HIV/AIDS volunteer virtual
asisted care community website, & my two-year
advocacy plan that goes with it.

namasté

—richard kearns

rk@aids-write.org
http://aids-write.org
https://havvacc.wordpress.com

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