I can’t recall when but I used to subscribe to a monthly magazine from SADeaf. One day, I chanced upon an article about someone who has NF2 as well. I was amazed and so relieved as if luck was on my side. However, I didn’t know how to reach her and didn’t think to email the editor of the magazine.
I had just started accepting the fate I’m about to face and was trying to come to terms with my diagnosis. I searched for sites I can seek comfort from online and chanced upon inspire.com, where I found a network of people with Neurofibromatosis. I registered myself and made an introduction, stating that I was from Singapore. Lots of them are from overseas and a sense of comfort overcame me when I know that I am not alone.
A few days later, I got a message. It was the girl who sent in the article to SADeaf! What are the odds? I was super excited. We exchanged contacts and were really happy to find each other so we can share our journey with NF2.
We met for the first time at SADeaf where we attended a Yoga lesson. At that time, NF2 hadn’t wrecked my system so much but had affected her balance quite a bit. Albeit our challenges, we had a great time and continue to maintain contact up ‘til today.
We met a few people in Asia, namely SG and KL, who has NF2, online. Along the way, we lost two of them to NF2 complication and draw strength from these strong fighters to keep moving forward and make do with whatever ability we’re left with. We joined a few NF2 community pages on FB where we received more exposure and learn more things about NF2 from people who have it longer than us. Most of them are from overseas though. It is truly an eye-opening and a reassuring experience.
It is never money or donations we are after but simply awareness and compassion, as we realized we are the only ones on this NF2 journey, which makes it hard for others to understand. Not many would want to know what it is either because NF2 is not as common as cancer or autism which have affected a lot of people. It is so rare that it’s easily dismissed and misunderstood.
All of us haven’t met face-to-face at once but hope we could do so one day. For now, it’s just me and Amy, my fellow NF2 comrade and friend. 🙂