Monday, January 19, 2015

MS on TV

Last night, my 11-year old son and I watched Guy's Grocery Games--a Food Network cooking competition show where families run through a grocery store then cook meals with challenges like "canned food only." (Don't judge me. Everyone has embarrassing TV viewing and mine could be way worse....he hem...Housewives franchise, anyone?)

Anyway, when one of the contestants was asked what he would do with his winnings, he said he would help his mother who was disabled due to Multiple Sclerosis. Then a picture popped up showing a woman slumping in a wheelchair. I took the opportunity to remind my son (for the umpteenth time) that "20 years after diagnosis, about 1/3 of people who receive no treatment may require a wheelchair or other assistive device"...which means that 2/3 won't need a wheelchair and those numbers will be even better for those that take disease modifying drugs.

I started thinking about how often I hear "MS" on TV. Lest you think we are a household of couch potatoes, you should know that, although I have been known to have marathon viewing of Showtime series and my teenager watches way too many shows about little people, there are days when the television isn't even turned on...much to the dismay of my children.

I used to watch the medical drama program House on a regular basis. More times than not, Dr. House and his team of diagnosticians had to rule out Multiple Sclerosis when they were trying to diagnose a mysterious paralysis. I don't drink anymore but I always thought it would be a great drinking game to do a shot every time someone mentioned MS.

Remember West Wing? The show made headlines when viewers learned that President Jeb Bartlett had a medical secret.  Yup, you guess it:  MS. Viewers learned a lot about relapsing and remitting Multiple Sclerosis including symptoms that came and went and injectable disease modifying medication.

According to the National MS Society, an estimated 2.3 million people have MS. So, I guess I shouldn't be surprised I keep coming across so many characters on TV who have or may have MS. And then there's all the real-live famous folks:  David Lander (aka, Squiggy); Richard Pryor (RIP); Montel Williams; Teri Garr; Jack Osbourne; Annette Funicello (RIP); Richard Cohen; Tamia; Clay Walker; Ann Romney; Kelly Sutton and Trevor Bayne (NASCAR); Joan Didion; Alan and David Osmond; Josh Harding (NHL); Chris Wright (NBA); and, according trashy tabloid sites that came up on a Google search for "celebrities with MS," even one of those Housewives may or may not have MS!

They're in good company.

Friday, January 16, 2015

Remember Me?

I haven't blogged in a really long time. I can fill this page with excuses about how I've been parenting, working, volunteering, having fun with friends, traveling, and falling in love, or I can commit to myself (and since it's public, to all of YOU) that that is going to change...right now.

I spoke about having MS and low vision at the Perkins School for the Blind last night for a launch party of a friend's new company--Visual Vitality. (If you want to learn more, visit their site at

Telling my story and talking to people afterward has given me a desperately needed kick in the butt to re-devote myself to this blog and my book.

I was given 5 minutes to speak and I wanted to make sure I didn't ramble so I wrote some stuff down ahead of time. This is, more or less, what I said:

I’m thrilled to be here for the launch of Visual Vitality. My friend, June asked me to speak today as a representative of people with invisible disabilities.

So, here’s my story:  I was just going along, living my life as a fully abled person, not really cognoscente of that fact that everything could change at the drop of a hat until…well…until everything changed. One Wednesday morning in August of 2007, I woke up nearly blind in one eye. I assumed it was pink eye or the result of something equally innocuous. It took three days, a dozen specialists, and hundreds of thousands of dollars in tests later (thank God I lived in Boston and had health insurance) to learn the cause of my sudden vision loss.  After hours going back and forth between MGH and the Mass Eye and Ear Emergency Room, Dr. Kenny Chang, pulled me into a private room to give me a diagnosis.  Now I’ve watched enough Gray’s Anatomy to know it wasn’t good news. They can tell you about negative results in the hall. And I was right. I had MS--Multiple Sclerosis.

Until that day—September 1, 2007—I knew almost nothing about MS. I thought everyone with the disease was in a wheelchair or would be soon. I didn’t know that MS could affect any part of the central nervous system. For me, it was and is my optic nerves. My vision deteriorated still more and, before they were able to stop the progression, the damage had been done. You see, MS attacks the myelin coating over our nerves, I think of it like a big ugly rat eating the plastic cover on an electric wire. When the nerve is exposed, there can be permanent damage. For some, it’s the spine (hence the wheelchair) and for others, it’s the optic nerves. I once heard that if you put a hundred people with MS in a room, they would have 100 different sets of symptoms.

In the last 7+ years, I’ve learned a lot about Multiple Sclerosis and living with low vision, including that people don’t always know. As I often say to people who tell me I don’t look like I have MS, it’s not a disease of the face. I no longer drive, I read large print, and sometimes I have balance issues and trouble navigating unfamiliar or crowded spaces. But I don’t wear a sign or use a cane. And if I don’t need a cane, should I have to use one for people to make reasonable accommodations for my disability?

When I go into a doctor’s office and they hand me a stack of forms to fill out, I always ask them if they are available in large print. They usually aren’t. Most medical staff are more than happy to read the forms to me but that’s not what I asked for. I learned how to read at 4 years old and I want to read them on my own. And I should be able to. The technology exists to make that possible for me. Why not hand me an iPad where I can make the forms the size I need or listen to an audio recording of the medication side effects myself? What if doctor’s offices and other businesses could be trained about how to provide this kind of equal access to people with disabilities?

I am not bitter and I do not feel sorry for myself. I believe that MS is a gift in my life. I’ve learned so much about myself and the world, I’ve met amazing people in the MS and other disability communities, and I believe I am a better person because of my MS.

People with disabilities—minor or major—want to fully participate in life. Sometimes we need accommodations to make that possible. Visual Vitality is going to help everyone get the equal access promised by law.

Thank you very much and congratulations Visual Vitality. You’re doing important work.

Watch this space. Lazy Julie is BACK.