Bob Massie

Bob is suffering from advanced liver disease. After probably thirty years
of hepatitis, his liver is interlaced with a tough netting of scar tissue –
cirrhosis – that cannot be reversed. He has tried three different courses of
Interferon over the last three years, but his strain of the virus (genotype1B)
is the most intractable and his liver is too damaged to tolerate the treatment
and regenerate. While his liver can st ill function, he feels terribly sick
almost all the time, is easily exhausted and worst of all suffers from encephalopathy,
sometimes called brain fog, where his powerful brain slows to a crawl and he
is locked into a kind of mental concrete, sometimes for hours on end. All of
these debilitating effects are reversible but only with a new liver. A liver
transplant is the only way to cure his disease and ultimately save his life.

The competition for organs from persons who have died is extreme. There are
not enough organs to save all the people who need them. (This is a reminder
to discuss donation with your families and sign your organ donor cards.) In
order to qualify for a liver, you must get incredibly sick, but if you get
too sick, then you are a bad risk for survival and you cannot qualify either.
Because of the scarcity of cadaveric organs, and the debilitating nature of
Bob’s symptoms, our doctors have strongly recommended the option of a living
donor transplant. We are seeking a donor.

In June 2004, we sent a letter to some friends and family members. Many of them
checked their blood types and a few came forward to explore with the hospital
the possibility of becoming a donor. Because the hospital keeps these inquiries
confidential, we don’t know who so generously considered this. Because the
hospital is scrupulous about not pursuing possible donors, the hospital staff
leave it up to a volunteer to decisively come forward. At this point, no one
has done that. Even if someone did come forward, an extensive medical workup
could rule the person out, leaving us back at square one. For that reason we
are asking a wider circle of friends to consider becoming a donor.

This is a difficult request. As most of you have experienced, Bob is extraordinarily
good at asking people to donate their time, money and resources to important
causes. But he finds it very difficult to imagine that anyone would make this
extraordinary gift to him. Yet we need to ask.

If you or anyone you know is interested in learning more about living donor transplants, please read the donor information page.

Timing and Progress

After a lifetime of successfully powering past his own physical
limitations, Bob has needed to change gears and adjust his life to the demands
of this disease. I have been truly astonished at the grace and thoroughness
with which he has done this. He has made a remarkable transition from a totally
engaged and overworked global activist, to a more sedentary advisory role
in Ceres. Two years ago Bob resigned from the job he loved as Ceres’ executive
director, and went on disability. His health permits only limited
travel with assistance. He remains connected and engaged through the phone
and Internet and is st ill full of ideas. Overall, he deals well with the
ongoing disappointment of not being able to give more energy to the important
struggles he has always championed.

He has found new projects that do not demand the absolute concentration and
follow through of his earlier work. While less energetic, he is no less committed
to ideas and actions, as anyone knows who received (is there anyone who did
not?) his missives about the Kerry campaign.

But it is clear that Bob’s energy and focus are declining. The change is
not predictable or along some mathematical curve. On some days he is quite
good; on others he is really stuck in the mud. Last summer the change was frightening.
For several days in a row he would not “wake up” until late afternoon. Visiting
friends in August, he would swing from utterly lethargic to alert and entertaining.
One minute I’m wondering whether to take him to the hospital, and the next
he is the life of the party. I have learned to ride the ups and downs and to
watch for the longer trends.

In September and October, we had a kind of reprieve when he cleared up early
in the day. We even went canvassing in NH every weekend, and rallied over a
hundred people to go along. Since then he is more exhausted and feels very
sick most of the time. It is easy to forget this when you are with him, as
he does not complain and tends to power past it when he has a meeting or company.

As a family, we have successfully made the transition back to my academic
schedule. I savor my time at home with Bob and our daughter Katie, who is enjoying
first grade. John (15) is thriving in high school at Boston University Academy
and Sam (17) is applying to college.

We recognize that this is an unusual letter. We are at a difficult
time in our lives and we are reaching out to anyone who might be able and w
ill ing to help. It is impossible to predict where this kind of
help might come from, so we are sending out this letter as a broad appeal.
I know that Bob has touched many different lives through his work, teaching
and friendships. If you know anyone who might like to be in touch with him,
pass this letter on. Please let me know if you have any questions or suggestions,
or if you have sent it on to others. You can email me at annetate@rcn.com.
Bob can be reached directly at rkmassie@rcn.com.

Please stay in touch. When Bob feels poorly, he gets stuck in the
house. He appreciates receiving calls and email. If you need to be sure that
he heard from you, please copy me on emails and I’ll follow up. The “brain
fog” means that he sometimes forgets what has come in the pile of messages.
Even if unanswered, your messages are greatly appreciated. We enjoy
visitors too, so please call if you can stop by for lunch or afternoon tea. In
time and with your support, we w ill weather this storm.

Love to you all, Anne