Could This Be You?
If good fortune were doled out based on merit, community service, or
humanitarian efforts, Thomas M. Hennessy Jr. would be the luckiest among
us. Instead, he is trying to live through what is, for many of us, the
worst imaginable nightmare. As if struggling with this disease year after
dreadful year weren't curse enough, his life has become a terrifying "There
but for the grace of God." At the end of April Tom was in a major car
accident. He suffered multiple fractures to his ribs, neck and spine.
Like many of us, Tom's disability benefits over the years have barely
covered his medical expenses-the premiums, deductibles, co-pays, etc.-much
less the luxuries of rent, food, and utilities. Almost a year ago, Tom had
to leave his home in Maryland, the only residence he's occupied since he
got sick over two decades ago. He managed to get to Florida, because a
friend there offered a temporarily unoccupied apartment from which to
figure out what to do next. A few months later he suffered a severe
relapse, and then the car accident. Now he is stranded indefinitely in a
place where he knows almost no one. Tom has as many friends as anyone I
know, but most of us can't even do our own grocery shopping, much less fly
to be at his side.
Tom's neurosurgeon says the crushed vertebrae seem to be healing slowly, so
back surgery may be avoidable. Braces help support his head, neck and back.
After several weeks in the hospital, he was transferred to a nursing home,
to which he signs over all federal and state benefits, in exchange for
which he has been made a ward of the state. Any personal expenses, from
telephone minutes to a set of pajamas, are supposed to come out of a
stipend of $30/month. Transportation to the neurosurgeon's office alone
costs $60. Consults with nursing home doctors are infrequent, and focus
mainly on physical therapy. The relevant aspects of CFIDS/ME are not
subjects of much experience or interest.
Tom's hard work and multiple achievements can be found at
www.rescindinc.org. He founded Rescind based on the belief that Myalgic
Encephalomyelitis, Fibromyalgia, Multiple Chemical Sensitivities and Gulf
War Syndrome were different ailments with common causes. His father was a
professional lobbyist, so Tom knew his way around the Washington, D.C.
machine, and was our first--and always unpaid--lobbyist, dragging himself
to offices and meetings, banging on doors, shaking hands endlessly, all of
it despite being grossly disabled himself. He has been adamant about and
worked toward the name change since 1988. He originated the establishment
of May 12 as International Awareness Day. He has received over 10,000
letters from patients all over the world, met with researchers and
clinicians at dozens of conferences, taken thousands of phone calls at all
hours, and received and sent out countless faxes and e-mails in his
constant support and advocacy for patients everywhere.
Now he needs our help. But not because we owe it to him-that suggestion
would offend him greatly. In fact, even the proposal of this notice and the
obvious need for financial help were met with the arguments that "Everyone
who has this is already broke", and "even healthy people, in this economy
they're strapped too." All he has asked for are prayers. You can help
additionally, though, even if just by passing this plea on to someone else.
If you or anyone you know live in the Boca Raton area, perhaps you could
make/suggest a short visit, or help with an errand, or transportation to
the next scheduled bone scans. If you know of a local organization,
advocate, or physician at least sympathetic to CFIDS/ME and/or chronic
pain, sharing that information could be more important than you realize.
And as the weeks have worn on, Tom has finally agreed to the establishment
of a Hennessy Fund, because he is out of alternatives. If you are able to
help, please do it now, while it might still make a significant difference.
Since Tom's condition is still quite fragile, and his current place of
residence uncertain, (he has already been moved from one nursing home to
another), I have set up a dedicated e-mail account and will forward
printouts and snail mail to him.
Please send notes or information by e-mail to: forhennessy@gmail.com
Snail mail: Tom Hennessy Jr., c/o Danya Zucker, 1966 Orchard St., Eugene,OR
97403
If you need to speak with someone by phone, please send this request by
e-mail or snail mail and your call will be returned. (Don't forget to
include your own #!)
Tax-deductible contributions, please, send to National CFIDS Foundation,
via
http://www.ncf-net.org/donate.htm
; if you prefer to donate offline, you can send your check to the National
CFIDS Foundation, 103 Aletha Road, Needham, MA 02492. Don't forget to note
"Hennessy Fund".
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