h2g2 The Hitchhiker's Guide to the Galaxy: Earth Edition

I have syringomyelia. It seems I may always have had it but catalyzed it in early 2008 by doing something else to my back. So you could say I've developed a congenital defect.

So. I have a long syrinx in my spinal cord, and, since I'm unemployed and uninsured, I'm not getting treatment. I'm making up my own treatment as I go along. And although there is a surgical procedure for the condition, it doesn't seem to be a cure. Rather, all the neurosurgeon would do is puncture my spinal cord and drain the syrinx, thus relieving pressure on the nerve sheath. I have heard indirectly from two other syrinx owners, and the message has been the same -- don't have the surgery. The syrinx just fills up again. It would be like performing surgery on a doughnut to remove the hole.

The neuropathy peaked this past autumn: I couldn't stand up, let alone walk, and my legs were mostly numb and inert. That was also about when I stopped struggling to stand and began simply resting, regularly working the lower joints manually, applying a body brush to the legs to stimulate circulation, and doing a few basic exercises.

I was having acupuncture through mid-November, and it seemed to help, but once I could no longer stand, it took EMT-trained people to get me in the car (as a passenger!), and the only one of those in Lincoln is currently out of town till Easter. Without him, I had to suspend the acupuncture.

Now there is a very slow, gradual renascence of sensation and ability to move, as you've read in the salon. I'm wheelchair bound until I can get enrolled in some proper physical therapy to regain strength and balance, but that won't happen until I get on disability, which is as protracted and difficult a process as any bureaucracy can create. I even have a lawyer on standby.

No doubt about it, the American health system is an unjust and overpriced mess, if you can even get access to it. After living in England, I know what universal health care should be, and I'm perfectly exasperated with the situation. Patience! Once on disability, I'll be entitled to Medicare -- federally funded health care.

And that's my situation. I feel more and more optimistic as I improve -- I'm calling it the trickle charge effect.

Lil,

I am not sure if the horrified shock that Brits and presumably the Scandinavians feel about your situation comes through in the Salon. Not to mention the Kafkaesque brutality of your government systems. Your experiences, and those of other Salonistas, make it so plain to me that there but for the base of bob go any of us. The salon is special to me because it gives me access to such everyday stories. We may not say so in the Salon, but I do hope you know you have our heart-felt moral support.

I am so glad you are feeling more hopeful and that things are looking less bleak.

Ben