MS Strength

I have a quirky, folksy music CD that I bought back in the early 1990’s. That was a time when “alternative” music— part of the independent, non-pop genre— was intersecting with a movement called “grunge”, or unpolished music played by bands in their garages. The particular CD I’m referring to is by southern alternative artist Victoria Williams. And what especially draws me to this musician is her own multiple sclerosis experience.

Williams grew up in a conservative Louisiana family in the 1960’s. Admittedly awkward and quirky, she went on to study French and music in college while playing acoustic guitar for a local band G.W. Korners in venues around Louisiana and eastern Texas. Williams ended up leaving school and traveling to Colorado and eventually California, working at odd jobs and entertaining others with her guitar-playing. She established Los Angeles as her permanent residency in 1984, while landing an unsuccessful recording contract with EMI records.

Williams later signed a contract with Geffen Records and released the 1987 album “Happy Come Home” to little fanfair. At the time she was married to another songwriter (Peter Case), but this ended soon afterward and Williams went on to record her second album “Swing the Statue” in 1990 with an independent label. This began her notoriety as she started to tour with the likes of Neil Young and Lou Reed (1992.)

At around this time Victoria Williams began to experience a lot of weakness on stage, and she found herself having trouble walking. Shortly after, she was diagnosed with MS and needed to use a wheelchair. During this time her musician friends Matthew Sweet, Lou Reed, Pearl Jam, Soul Asylum, and others did a benefit series of concerts and a CD compilation of Williams’ songs for the Sweet Relief Foundation, a fund for artists who do not have health insurance.

Williams rebounded from the intial attack and went on to remarry, appear in the feature film “Even Cowgirls Get the Blues” (1995), and record several more albums—”This Moment: Live in Toronto” (1995), “Water to Drink” (2000), and “Sings Some Ol’ Songs” (2002.) She continued to tour with other bands for several years, and now currently plays guitar and sings with an LA band The Thriftstore Allstars, where she has ongoing show dates at the club Pappy and Harriet’s.

***For further information, see the Victoria Williams Biography and Fansite.

Winning a social security disability insurance (SSDI) case can be very difficult, especially if you’re young and not completely incapacitated. Many disability case processors do not know the harrowing effects that multiple sclerosis can have and how fatigue and weakness alone can keep an otherwise motivated person from maintaining a steady, well-paying job. Sometimes it’s necessary to employ a disability lawyer to secure the case. And it is affordable, because reputable lawyers make it this way.

When I found myself going from a full-time, busy health career to a part-time, low-stress library job, I sensed that my multiple sclerosis would become an obstacle from that point forward. My premonition couldn’t have been more on-target: because of my MS, I began to have problems with fatigue and leg weakness that hindered me even at the library. A few years ago I was let go from the library due to MS-related absences, so I applied for social security (my sketchy employment had been a problem since 2003, so I knew it was time to seek some help.) My first application for disability was rejected about five months later, so I called my local MS Society chapter and inquired about disability lawyers.

I phoned and met with the first lawyer the MS Society recommended. He informed me that about 80% of his clients were through the MS Society, and he won about 95% of his cases. I felt very confident. But what made me feel the most secure was his payment policy: he would represent me and actively gather my evidence and and he would receive payment only AFTER he won my case. It was his gamble, not mine. He would receive payment through my accumulated back-pay, either a flat fee or 20% — the lesser of the two. This completely put my mind at ease and we moved forward. My case went on for 2 and a 1/2 years (from my initial application until my court appearance after my second rejection.) I doubt I could have presented as thorough a case to the judge— my lawyer presented full medical and work files with doctors’ and employers’ notes and surveys that he largely obtained himself— and so I was completely grateful to have employed him to represent me. The case dragged on so long that I ended up paying him the flat fee because it was less: between 15-20% of my back-pay.

I have come to note that this is the standard, ethical procedure for disability lawyers. They should not demand any sorts of fees up front— initial consultation or otherwise. The fee schedule is in place to afford middle- and lower-income clients a fair shot at SSDI. Anything else is unethical.

**To find a reputable disability lawyer, contact your local MS organizational chapter (The National MS Society in the United States.)

I’ve been away from the website for about a week now and I’m trying to get back in the groove. I think I’ve finally kicked the sinus infection that dragged on and on for about 3 and 1/2 weeks(!) Things here are quiet, snowy, and cold…I’m finally resuming my library volunteer day work, which I haven’t been to in about four weeks. Bill will be reviewed at work soon, and his boss already informed everyone that they will not receive any kind of performance raises this time around. Which is annoying but understandable since he works for a small financial company and the stock market is in shambles. We’re glad he still has a job at all! But he’s going to push for another week’s vacation which won’t cost the company anything.

My one gripe about all of this is the ridiculous health insurance premiums we keep paying. Our insurance is pretty thorough (I’m very grateful), but we are paying about a third of Bill’s take-home income— or almost one of my modest social security checks— to cover the premiums. So it’s still like we’re living on one moderate income. I’m putting my feelers out to find more paid, steady writing opportunities (work I can manage from home and continue to manage even during an MS relapse.) Difficult but doable. No one ever said affording multiple sclerosis was easy…

Come on, Obama! We need better, more affordable health coverage here in America….