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 VisualVitality.org).

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.