This one feels personal, so forgive the “first person.” My wife — a sweet, smart, loving warrior named Toni — has multiple sclerosis. She was diagnosed two decades ago, and her life hasn’t been the same since.
MS is a cruel disease for a multitude of reasons: It’s exacerbated by stress, and yet the health care system in this country means that stress is inevitable when dealing with insurance companies, trying to ensure that prescriptions remain covered, help is available when necessary — generally navigating the ridiculous web of bureaucracy (I'm English so I know how good, and easy, a national health service can be).
The weather affects MS — Southern California’s temperate climate is far easier for her to deal with than the extreme seasons elsewhere. But still, the very hot days require careful planning.
Full-time work stops being an option, which is very difficult to come to terms with for a fiercely independent, ambitious, intelligent woman like my badass wife. The stability offered by her husband’s employment clearly helps from a financial perspective, but it doesn’t change the fact that she had plans for her own career, and the disease messily, unfairly whipped them away.
MS is also often largely invisible. People who are constantly tired, feeling pain (if they can feel their limbs at all) and maybe losing their vision might seem fine to the outsider. Some people with MS have good and bad days, but a good day can become a bad one in an instant. Someone with MS might not look as if they need a disabled parking space at the grocery store when they pull up — they more than likely will when they leave. This can lead to awkward misunderstandings with an ill-informed public.
Again, it’s a cruel disease, and those with it are often either stigmatized or ignored. That’s something publicist Nancy Sayle knows all about. Diagnosed with Primary Progressive MS in 2012, the super-successful rock & roll publicist had to dial back her business activities and figure out what to do next. Fortunately, she had friends like Steve Stevens (Billy Idol’s band) and Billy Morrison (The Cult), who immediately stepped up.
“2013 rolled in, and I had to tell my clients that I needed a beat and to figure my life out,” Sayle says. “I asked if they were still up for doing something, and it’s awkward to ask for money but I just couldn’t work. They did a benefit show. Foo Fighters’ Taylor Hawkins, Rick Springfield, Glenn Hughes, Great White — everybody showed up. Billy Idol himself. This was at the Whisky. It was so sold out we had to turn away hundreds of people.”
That was the beginning of what would become the annual Rock Against MS concert. Sayle realized that she was lucky to have such high-profile friends, but not everybody is in the same position. So she turned it into a nonprofit, with a mission to help people now, rather than finance the search for a cure but leave people who are suffering today to fend for themselves.
“It’s like, we need help now,” Sayle says. “I still struggle six years later. I can’t work full-force, and once it got out that I have this disease, even though it’s not stopping me being a warrior here, people disappeared. I was the cream of the crop [in PR]. I had Rob Zombie, Steve Vai — I had 47 clients and went to zero really fast. I don’t know if they think they’re bothering me, or don’t want to take a chance in case I can’t do my job, but I guess that they just don’t understand the MS.”
Sayle and Rock Against MS recently started working with Richard Pryor’s widow, Jennifer Lee Pryor, and the Richard Pryor estate, even naming an award — Pryor’s Platinum People Award — after the legendary comedian who lived with the disease for 20 years. That is handed out each year at the Rock Against MS event, to someone who has gone above and beyond for the cause. Sayle knows how important those advocates are; the help is vital, though she herself will never stop fighting.
“If you saw me, I’m physically fit, I’ve got long hair and tattoos, I’m 54 but people think I’m like 40 — great, I’ve got good genetics,” she says. “But I have Primary Progressive, the worst kind of MS, so every day is a bad day. We live in trapped bodies. People need to be open to knowing that MS is invisible. Do I look good? Thank you, but I can’t feel my leg, and I’m losing sight in one eye. Every day is a crapshoot.”
This year’s event will take place at the Los Angeles Theatre in downtown L.A. for the second time, after outgrowing the Whisky. Sayle and Rock Against MS are still growing into the new home, but she’s confident that they’re in the right place.
“We’re trying to brand and build with this theater, because it’s just amazing,” she says. “Two thousand seats, historic, built by Charlie Chaplin in 1931, yummy and beautiful. What the space allows us to also do is put on an orange carpet. We’ve been really lucky — a lot of celebrities are showing up for us, for the carpet. We also have this huge stage and a 50-foot screen. We can not only have a really cool video but also put some educational pieces out there.”
If you like this story, consider signing up for our email newsletters.
SHOW ME HOW
You have successfully signed up for your selected newsletter(s) - please keep an eye on your mailbox, we're movin' in!
Performers this year include Juliette Lewis, Art Alexakis from Everclear, members of Fuel, The Offspring, Faster Pussycat, BulletBoys and a set by Jack Russell’s Great White. Hal Sparks and Craig Gass will co-host. It promises to be a special night, but Sayle is keen to remind us all that this isn’t all about the big names on show.
“The thing that I want people to understand is that, I know they’re waiting to see who the other big names are,” she says. “But remember your money goes to helping people who suffer, and it’s helping us build the opportunities to give out to people. Not just wait for the cure. If people can look beyond who’s playing, and remember what this is about, you’re gonna save some lives.”
Rock Against MS takes place at 7 p.m. on Saturday, March 31, at the Los Angeles Theatre. For more information, visit rockagainstms.org.