English - International Waldenstrom's Macroglobulinemia Foundation

IN THE TORCHLIGHT
b y Lisa Hermann, IWMF Member
If I have learned anything since my 2010 WM diagnosis, it is
to regularly challenge any school of thought one may have,
no matter how convincing our ‘set in concrete’ thoughts
may be. Traveling to Borneo a few months ago showed me
just this. Let me share my Borneo story with you.
I was quite the nomad prior to diagnosis but had rigidly
decided that keeping away from exotic developing
countries (those vastly different from my Western lifestyle)
was the best long term choice for my my physical wellbeing––and
thus avoiding and thus avoiding unnecessary
sanitary or bacterial issues, inoculations, and even
unnecessary radiation scanning devices at airports.
I laid my nomadic soul to rest and went about my business,
questioning my diet and exercise regime, my work load, my
stress and negativity load, friends, family, and relationships,
and also my emotional and psychological well-being––in
all of which I made changes. The problem with pushing
aside one’s true spirit is that it rears itself to the surface at
the least expected moment, and earlier this year my thirst
for overseas travel became necessary for the nomad in me.
I felt like it had been crushed from being ignored far too
long.
Borneo had always been on my list of fave destinations
to visit. Everything breathed culture when I thought of it.
Price-wise it was a ridiculously cheap holiday. It also scared
me. Trekking in forests, potential mosquito and snake bites,
possible rabies, food poisoning, dirt and disease concerned
me, but something egged me on. Did I wish to live a life
based on ‘what if’s’ and fear? Or, did I want to live a life
based on making educated choices? I was a Wallie at 37.
Still very young. Still very free spirited.
I researched as much about Borneo as I could. I understood
the consequences of any choice I made. After a few more
days of deliberation, I broke the news to my mother that I
had booked the ticket and I was going within two weeks.
I was even equipped with the right lines to say when her
despair and concern became somewhat intensified. But had
I not chosen to stick with my decision, my spirit––at some
time in the future––would have broken, depression most
likely would have kicked in, and this probably would have
killed me earlier than anything WM would do.
Borneo (Sabah) was everything I had read about and
more. The plethora of different fresh and healthy foods
was magical, the generous spirit of the locals I met along
the way blew me away. Fellow backpackers were all too
open about sharing their experiences with me and telling
me the best spots to visit. Seeing an orangutan in the wild,
a species nearing extinction, was the tourist’s highlight for
me. I wept for days after knowing that I had seen a living
thing so unfortunately very rare, just as I wept as my bus
drove through kilometers of the palm plantations that are
overtaking the beautiful environment for which Borneo is
renowned. My mind was even further opened to the Muslim
culture. As a woman traveling solo, I thought about how
fortunate I am to have the freedom back home to choose
whatever I want most of the time and, out of all Western
luxuries, a good education.
I met people who were both sicker and healthier, richer
and poorer than I, I heard and saw things I would not
have otherwise seen. I learned about Borneo’s politics,
environment, and culture and shared my new knowledge
with others back at home. I became more self-reliant on the
trip, less fearful about making bolder life choices, and I also
had time to be more aware of my body’s requirements and
rested when I needed it.
Traveling to Borneo was more than just a holiday, it was a
real wake-up call to not let my diagnosis take over the way
I viewed the world and how I conducted myself in it.
As this issue of the Torch goes to press, Lisa is off again!
This time to Vietnam, Laos, and Cambodia. Her account
of the bold decision to satisfy her own inner call reminds
us that while WM is often thought of as a disease of the
elderly––or perhaps of ‘those advancing in age’––not all
Wallies have had the chance to reach middle age before
diagnosis. Their concerns need to be voiced more regularly
in our publications.
In the Torchlight is a new column for WMers of all ages
to share personal stories, special moments, events, or
achievements that made you stop recently and reflect on
your strengths and good fortune. Won’t you share them
with the Torch? Our pages are full of stories of awards,
accomplishments, successful treatments, new adventures,
strength of character. We hope to include this column in
each issue, but we need contributions. Write to your editor if
you have a suggestion at ariginos@me.com.
IWMF TORCH Volume 14.2
21