Posted on March 13, 2017
Me·so·the·li·o·ma – this is a word I’ve learned to pronounce, the hard way.
It was in 2003 when I first heard this terrible word from my husband’s doctor. I couldn’t wrap my mouth around the word, and I couldn’t wrap my mind around what the doctor was telling me — that mesothelioma was fatal, and there was no cure. Paralyzed with fear and grief, I began to comb the internet for more information.
Isolation intensified my fear and grief — but what do you when you’ve been diagnosed with a rare disease? Where do you go for answers? What’s the right treatment? I did what most people would do, I turned to the ‘web’. What I found was interesting. Instead of pages of medical information or organizations dedicated to mesothelioma, I found lawyers, as mesothelioma is often litigated. Then I stumbled upon the Mesothelioma Applied Research Foundation (MARF) symposium, and my world opened up.
When I found MARF and the symposium, it was more than finding accurate, valuable, patient-driven information — it also meant I found people, a community, something I desperately needed as a learned to face my new normal.
I couldn’t wait to attend my first MARF symposium in 2003. Alan wouldn’t go, but for me it was invaluable. I was able to seek out treatment information, commiserate with and ask questions of fellow asbestos victims who’d already been down the path.
At first, traveling to the symposium was part of my quest for treatment information, but after we lost Alan, the symposium became a place to heal my grief within a community that truly understands the pain of losing a loved one to asbestos. It was one of the great honors of my life to be honored with the Bruce Vento Hope Builder Award alongside Larry Davis at MARF’s 2011 symposium.
Regardless of where you are on your journey as a Mesothelioma Warrior, I cannot stress enough how important connecting with community is. Rare diseases, especially those like mesothelioma with no known cure, can be debilitating in their capacity to isolate us. Events like MARF’s symposium and ADAO’s upcoming 13th International Asbestos Awareness and Prevention Conference are invaluable for providing the opportunity to connect with folks who get it, and get the support and camaraderie we so desperately need.
Sadly, for the first time since 2003, I will not be at the MARF symposium this year and will dearly miss the kind support from all of who understand our mesothelioma world. Please text, email me or post on Facebook from the symposium. I would love to hear from those of you who attend.
Together, we make change happen AND make each other’s journeys easier.
Linda Reinstein