I am continuously a patient, but at the
same time, when I was first patient I've
— and this is into my fifteenth year with this disease — I was told it was a
ten-year disease, which was kinda
depressing, but I thought, "OK, ten years is  a
long time."  And then I started getting
worse and worse and worse. And there was
no support other than my family, of
course, and friends, but there was nothing
organized. There was no way for patients
to talk to other patients and so, I kinda
did the journey alone without anybody
who'd also been there. Then when I
finally started feeling better after
being in a clinical trial and being on
the drug that's kept me alive
through today, I realized
that I needed to do some giving back
because I was still here and other
patients I knew were not and so it was
time to pay back. So I went to a
conference met one of the people
who runs MPN advocacy and education and I
said, "You know, I'm finally feeling better.
I need to do something to help other
people." She said, "You could start a
support group." Well, we live in Idaho and
this is a very rare disease, so my
concern was — you know, who else is there?
Well it turned out there were quite a
few people so we put my name out as my
contact information and name and
everything else — and I started getting
phone calls. And so next thing I knew, we
had one member and then two
and so on. So we're still going, and that
was four years ago and we have several
members — we unfortunately have lost a few
and we've gained a few. So we have a new
one I'm going to meet next week. I'm
excited because it's kind of a nice
cycle of things. My background is in
teaching in special
education and school administration. So, here's my chance to continue to teach
I'm always a teacher. I'm really
enjoying it, but the important side of it
is that by spending a lot of time doing
all of this and helping other people I
forget about my disease and so it gives
me a chance to be outside myself and not
worry about you know what's going to
happen tomorrow or next year or whatever.
That part of it is really important
to me — that's the selfish part.
