The first time that I actually met and talked with anyone else with MS was almost 18 months after I was diagnosed. I went to San Antonio to be inducted into the MS LifeLines family as an Ambassador. Up until that time I had not dared go to a single support group, walk, or other MS-related event because I was afraid of what I would encounter and how it would make me feel.
Although I had not kept my diagnosis of relapsing MS a secret, or even been unwilling to share it with anyone who would listen, I had not gotten to do so with anyone who could really understand where I was coming from. To say that meeting 20+ such people all at the same time and spending a busy weekend with them all was a cathartic experience would be a gross understatement. Finding that everybody there were just ordinary, generally healthy folks going about their everyday lives was eye opening. Sure, they had been touched by MS, but like me, they had made adjustments and got on with the business of daily living.
Sharing my story and hearing the stories of people who understood from experience marked the end of a long period of time during which I felt like a victim which allowed me to put MS in perspective. My wife said that I returned from that weekend acting like I'd just been to an old time tent revival, I was so enthused.
Since then of course I've had the opportunity to share my story with hundreds of folks and, when they feel like sharing, listening to theirs. It's always time well spent. At one regular group I attend, a number of participants decided that they wanted to write down and share their stories after they'd heard mine. One guy who'd kept his diagnosis secret from almost everybody in his life for a long time even wanted to do it (and did a fabulous job, I might add). He told me afterwards that it was the most cathartic experience he'd ever had.
Of course, I was incredibly humbled to have inspired people to want to share their stories, but I was most happy that I had shown some people how healthy it can be to share experiences and tips within the MS community. I have learned so much out there. My life has been improved immeasurably, both spiritually and physically from being a part of the MS LifeLines community. It really is a village. And that village has large suburbs — I've met very few people who don't have someone in their lives that they care about who has MS. You don't have to go it alone or keep it all bottled up. We teach our kids that sharing is good, and it's very true.
