TRIO Member Stories:
Jane Liaw
janeliaw@gmail.com
I’ve
been
a worrier since I was a child. As far back as I can
remember, I would wait anxiously when my parents left
the house without me, afraid something terrible had
happened and they would never be coming back. As a
college freshman, I gravely told my Resident Advisor,
who was dating a younger student, “Marrying a younger
man is a great idea because men die earlier than women.”
She laughed hysterically and went off to tell my dorm
mates what I’d said.
Do
other
18 year olds mull over things like that? I think not too
many.
In
2010,
I did get married, to a man my age: 34. We bought a
house and had a wedding in the same month; we talked
about starting a family soon. While growing older had
naturally tamped down my anxieties, I still held the
irrational belief that worrying about something could
prevent it from happening—I just had to worry about
enough things and cover all the bases. And I still had
“hypochondria-by-proxy”: I had no concerns when I got
sick that it could be something serious, but if a loved
one had symptoms, I’d scour the internet to see what
terrible afflictions they might possibly have.
Just
eight
months after our wedding, my husband Taz was
hospitalized after routine blood tests indicated
something was very wrong. Though he had a mild case of
Crohn’s, a chronic inflammatory bowel disease, we’d
thought he was otherwise healthy. As we waited in his
hospital room, I thought back to the past few months
when Taz had been feeling cold and tired quite often. He
wore sweaters when I was warm without them. He had a
portable heater he placed next to his desk while he
worked, and it was on all the time. He regularly fell
asleep watching TV in the evening.
These
were
all things I recalled in hindsight after the diagnosis,
when I kicked myself for not noticing sooner. Taz had a
kidney biopsy while hospitalized and the results
indicated chronic kidney disease, with little kidney
function left. His nephrologist believed the damage had
been a side effect of his Crohn’s medication, and had
probably been ongoing for quite a while. A transplant
and/or dialysis would be in Taz’s future, sooner rather
than later.
Taz
has
the good fortune of being a natural optimist. After a
few minutes of shock, he was ready to do what he needed
to do and get on with life.
I,
on
the other hand, needed a bit more time to let the news
sink in. I also went into action right away, researching
the kidney diet and revamping my recipe repertoire,
reading kidney disease studies and literature, checking
our health insurance and other life documents to make
sure everything was in order…and worrying.
Naturally,
I
worried. Now instead of far-fetched scenarios, I had
something concrete and worth gnawing over. The first few
days after diagnosis were difficult—I remember a haze
surrounding me while I sleepwalked through work and this
new kidney-centric world. I felt I’d done everything
wrong all along; I’d worried about as many things as I
could think of, but managed to be blindsided by kidney
failure. Kidney failure caused by medication—the chances
were miniscule! I had not covered that base.
I
wondered if we should go ahead with our plan to have
children. What if Taz wasn’t healthy enough to work, or
to help raise kids, or God forbid, wasn’t around at all
to watch them grow up?
(Incidentally,
our
situation reinforced in me the conviction that patients
should take control of their care and make sure their
particular needs are met. It wasn’t until a year after
Taz’s hospitalization that his nephrologist advised us
that now, pre-transplant, would be the best time to try
for children if we wanted them, since there are some
indications that anti-rejection meds can affect
fertility. A nephrologist is not necessarily obligated
to discuss fertility issues with their kidney patients,
but then again, neither was anyone on Taz’s care team.)
The
nephrologist
we saw for a second opinion, a doctor renowned for his
bedside manner as well as his expertise, confirmed the
diagnosis but had encouraging words. His wife had a
serious chronic condition herself, and he told us a
little bit about their experience. They’d been married
several decades, had teenage children together, and they
had been living with her illness since soon after they’d
met.
The
doctor
acknowledged our experience would be life-changing, but
it needn’t be negative. “Life will not go exactly
according to your plans, but it will still be good.” It
was not quite an “everything will be OK,” but it made me
feel better to hear it. No one can promise everything
will be OK. Of course not. And I was learning to live
with more of that uncertainty in my life, because I had
to.
Strangely,
after
the fog surrounding the diagnosis lifted, a huge weight
lifted from my shoulders. The situation held so many
unknowns that something in my brain knew I had to give
up trying to work it over. It was only
through this experience that I was able to truly
understand—not just cognitively but down to my core—that
worrying about bad events did not prevent bad events
from happening, nor could I prepare myself emotionally
by thinking the worst. There was simply no way to
control the world through worry, and there were so many
things that could happen in life, there wasn’t much
point in trying to worry about all of them.
Still,
it
was with some relief that one day I realized I was
turning over a trivial woe in my mind and getting worked
up about it. For a while, there had been no room to let
the small stuff in; these little distresses crowding in
meant a return to the everyday. Before, my anxieties
were further compounded by guilt that I was having such
negative thoughts despite my good fortune—now, I let the
whole lot of it go and move on.
I
know I am very lucky, and worry comes with the territory
of loving someone. Taz is still feeling healthy, working
and traveling as usual. His sister is entering the home
stretch of donor testing and, if all goes well, Taz will
have a transplant sometime soon. The odds are in our
favor, and I don’t even consider the possibility that
the transplant might not work out. I’ve decided to keep
living as if everything will, to keep planning for a
family and a future together.
I
don’t know what that future will bring. I don’t know if
soon Taz will not be feeling as good, when his
transplant will be, or how well he will do on it. I
don’t know if we will die old, together, while holding
hands on our front porch swing. And if we don’t, it
would be a shame to waste today worrying about what
might happen tomorrow. All I know is that today, while I
have a cheerful and active husband—today is pretty good.
—Editor’s
Note:
Her
story
will be updated as she and Taz
move
forward
in their ‘transplant adventure.’
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