This is actually a long overdue article . I’ve written about my entry into PVA but I’ve not gotten into a ton of detail beyond that.
The very first National President of Paralyzes Veterans of America, Gilford Moss, had MS. He was diagnosed in 1945 and became the organizations President in 1946. Back then, they had no MRIs and as I understand it, they arrived at his diagnosis due to his high blood pressure among other things (like not being able to ambulate). When I first joined PVA, I found a group on Facebook called Veterans with Multiple Sclerosis and I loved being part of a group that had shared experiences like me.
However, as I would tell others to join PVA, I heard rom quite a few folks who said that they were denied membership. Something about their MA not qualifying. This was strange I thought so I started making inquiries. Turns out, Veterans with MS had to show spinal cord involvement - meaning lesions on their spine. I thought this was pretty silly as the organization is not called Spinal Cord Injury Veterans of America, it’s Paralyzed Veterans of America. If you can’t walk or have extreme difficulty, you should qualify.
So started my next crusade - open membership eligibility to any Veteran with a MS diagnosis. I should exaggerate an say it was a long drawn out fight but it really wasn’t thanks to one individual - Dr Michell Cameron who was the head of the VA’s MS Center of Excellence West. I asked her what percentage of Veterans of MS appear in their brains and eventually in their spines. Her answer was “Officially 82% but we think that number is actually 100%. The MRIs are not sufficient to pick up to small lesions on the spine. That’s why every time you get an MRI, new lesions can appear but they are not new - they just were detected.”..
Armed with this information, I drafted a resolution for the 2022 National Convention to allow any Veteran diagnosed with MS to be eligible to join PVA. It passed Unanimously. But then, the next battle started. Getting MSers out of the shadows and stop treating us like a red headed step child.
PVA is a great organization but like many VSOs, change does not come easy. We were often accused of doing our own thing and not adhering to standards, etc. At one point, I saw reference to the Executive Committee meeting minutes that they were going to disband the MS Committee. That didn’t go anywhere but it did create the impression that we were unloved.
That’s why we started calling ourselves the MS Mafia. It’s a nod to anyone who was ever part of the E-4 Mafia in the military. I couldn’t be prouder of our group.
