YES! It’s hard for me to believe it myself, but I was finally enticed by a fellow classmate from high school. I learned about our common disease through, of all places, FACEBOOK. YES!
I wasn’t sure if I’d ever join such a group: my long road to diagnosis made me settle slowly into the idea that I probably had multiple sclerosis. I wasn’t hit over the head with a drastic flare-up and suddenly changed: there was a slow progression with attacks increasing in severity and duration over the past 11 years. When I was actually diagnosed, I was going through a downward spiral of ever-decreasing employment and an uncertain future of disability benefits / no satisfying career. The last thing on my mind five years ago was to join people face-to-face and keep from bursting into tears.
My mom and I actually once attended a seminar (given by my honorable neuologist) for newly-diagnosed patients. I was in such a slump at the time and I could barely move my limbs as I shuffled, mid-relapse, into the meeting where pharmaceutical reps hawked their wares—pens, writing tablets, mouse pads, water bottles, fanny packs— and a nurse handed out a poem about what MS was akin to: believing you’re going to fast-paced, glamorous Paris and being rerouted to Bavaria. Both are great, but different. And the subtle beauty, slower pace, and depth of Bavaria becomes “the road less traveled.” Well then and there I burst into tears and made my mom get up so that we could leave. I think I might have frightened all the NEWBIES! I can laugh about it now, but at the time I was too neck-deep in my own concerns and depression and anger to want to share with others or be a source of comfort and understanding for the rest of the group.
Since being diagnosed, I’ve finalized my disability case and have found a steady– albeit slower– pace with satisfying volunteer hours, a class or two, and some freelance writing work. Things have stabilized both physically and mentally. I’ve gained insight from a social worker and have made strong bonds with online support networks. And yet I’ve had the ever-increasing need to meet others in person to support, be supported, educate, be educated, laugh with, and occasionally commiserate with. The craving to be in an ongoing group setting where I can steadily grow with other MSers. Little did I know that this need would be met with a local in-person support group through the MS Society. And that I would learn about it through a fellow classmate on Facebook. Life is STRANGE.
I joined the group in November of 2009 and we had a Tai Chi instructor (a patient’s mother) who gave us simple poses and breathing exercises to incorporate into our daily routines. We also spoke of Thanksgiving recipes and what we do for the holidays. In December the group met at a Chinese buffet and we spoke about the new concept of CCSVI. Was it a lark or would it get further research? And then this past January we met and just talked for two hours– no instructional demonstration or specific agenda. Just talk. NICE. And I have to tell you that because I’ve become emotionally and physically ready to face my fears, I have been met by a bunch of people laughing and kvetching and sharing and educating and not ONE moment of it has made me want to burst into tears.
*** For more information about MS support groups in the United States, visit the Nat’l MS Society and the Multiple Sclerosis Foundation.
