Jim Zamora, a spokesman for SEIU Local 1000, the largest state employee union representing almost 100,000 state workers, spent 15 years as a reporter for both the San Francisco Chronicle and the San Francisco Examiner. After a recent, serious bout of a health condition called transverse myelitis, he started a blog to tell people about his experience: http://myelitis.tumblr.com.
Tell me about your recent health problems.
On the morning of Friday, April 15, I had done my usual morning workout, or at least I try to make it usual, which involved a mix of stretching, exercises, sit-ups and crunches. I noticed a sharp pain on my left, lower torso. At first I thought maybe I pulled something and should do a few more stretches. I didn’t think that much of it and finished up. While I was taking a shower I noticed my left side- lower left torso, hips and leg, were getting numb. The thing that stuck in my mind was, “I wonder if I’m having a stroke?” This was kind of freaking me out.
Instead of going to work, I drove to the nearest Kaiser office. When I told them, they immediately called an ambulance and sent me to the nearest emergency room, Sutter Emergency in Davis. Sutter checked me out and said they were absolutely certain I did not have a stroke.
The other thing we checked out is if some sort of disc in my spine slipped or ruptured. You know, middle-aged guy doing sit-ups to bring in his belly, that’s a pretty obvious narrative. It wasn’t that. Meanwhile, my left side is getting numb, particularly my left leg. They went through a bunch of possibilities and eliminated all of them. They sent me on my way with a pair of crutches. I was anxious to go, I had plans with my daughter that night.
They said, if this doesn’t improve over the weekend, contact a specialist on Monday. But on Saturday morning, both my legs were numb. I couldn’t even get out of bed. My left leg was useless, it felt like a giant slab of meat. My right leg was probably at about 30 percent. I couldn’t even hold myself up on crutches. I didn’t own a wheelchair. The dog wants to get out, my 10-year-old daughter is asleep in the other room, and I’m thinking, “How do I go to the bathroom? How do I do anything? And why is this happening to me? Is this going to be the story of the rest of my life?”
I’ve had a few scary moments. Prior to doing politics, I used to cover a lot of crime stories. I worked at the L.A. Times from ‘90 to ‘93 and was part of their Pulitzer Prize-winning team covering the L.A. riots. I hung out with a group of looters and got shot at. Somebody literally less than six feet away fired a gun at me. I don’t know if he was trying to hit me or scare me, I didn’t stay and get that quote. But I was more scared that morning sitting in the comfort of my own bed than I have ever been in my entire life.
With my daughter’s help, I was able to move a little bit. I had crutches because I had knee problems in 2009. I realized at this point that I wasn’t paralyzed. Imagine if your foot falls asleep. I’ve felt that numbness for more than a month now, six weeks. I’m now basically disabled.
I’ve worked through some pretty intensive physical therapy. The way they diagnosed it as transverse myelitis is they worked through all of these other things. One of them was multiple sclerosis. When the two come on, they are similar, but for MS that’s just the start. For what I have, it tends to be a one-time thing that goes away. There’s a 90 to 100 percent recovery rate, but it takes time and it’s very strange. What I have doesn’t really leave a footprint. It could be a virus. Your autoimmune system starts attacking the lining of your spine. It’s not as if I was in a car accident, but it scrambles the nerves. When I put my foot down, I have a hard time knowing where it is on the floor. Because you’re not getting accurate feedback from your body, your brain doesn’t know what to tell your body.
When I was in the hospital, I wrote every single day on my blog. I’m such a media flak, when I went to the emergency room, there were a bunch of things I didn’t remember to bring, but I brought my cell phone charger. I’m blogging and trying to bring attention to this because it only affects one out of a million people. It’s become a blog about my rehabilitation, about the weirdness of learning to walk again. I think there’s a video up there of my walking with a cane but I can’t pick up the cane, that’s a big thing. From about age one-and-a-half, we do this automatically, but I don’t anymore. I’m literally learning how to walk. If you have to pay attention to something all the time, it’s a lot more tiring than something you do automatically.
I’m reading a fascinating book right now called “The Body Has a Mind of Its Own.” It’s like my body has the tube-and-knob wiring system like houses 100 years ago. My brain wants to find these muscles, but the main phone line is down. But it starts getting indirect feedback from other muscles, and the brain finds new ways to get in touch with muscles. Sometimes people who come back from traumatic accidents actually come back with more efficient nervous systems. When I’m fully cured, my nervous system might work better than before.