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On a personal note, 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 always tired, feel pain (if they can feel their limbs at all) and maybe lose 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.
This is a very cruel disease, and those with it are often either stigmatized or ignored.
Nancy Sayle was 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.
“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.”
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.