The Multiple Sclerosis Tapestry: Interviews with People whose Lives are affected by MS

Name: Stephen Harris

Type of MS: The bad kind. actually, my neuro thinks i'm on the cusp between Relapsing Remitting  and Secondary Progressive, I think and the other neuro I saw last week thinks I am solidly into SP.

Blog link:  One Life

When I first met Stephen on-line I was still reeling from my diagnosis of Multiple Sclerosis.  I didn't know what it meant or what to do or think.  One of the ways I coped was to reach out to find others who had this disease.  Stephen was one of the wonderful people I met during that crazy time.  Stephen brings comfort in his brutal honesty.  I didn't want to read sugar coated accounts about this disease.  I wanted to know the truth about what this illness can be like.  Stephen is both honest and profound in his writings.  When I read Stephen's answers to my questions for the first time, I experienced a deep emotional reaction.  I am sure you, too, will be moved by this particular interview.

Thank you for doing this Stephen.

When were you given your official Multiple Sclerosis diagnosis?

I was officially diagnosed in November of 2003. I'd had a bunch of weird unexplained physical symptoms - dizzy spells, muscle cramps, etc. - off and on for twenty or so years, and when they went away, my docs and I just said, well, thank goodness that's gone. Then I suddenly developed some serious foot-drop that I could not ignore, and then went blind in one eye. By the time I'd been thru all the testing (including a spinal tap) I had self-diagnosed (after googling optic neuritis). When my doctor finally "broke the news," I already knew.

Did your diagnosis take a long time?

From when I first presented symptoms to my doctor, it was pretty quick. I guess there wasn't much doubt about it.

What tests did they do to get to the diagnosis?

There were blood test, looking for things like lyme disease and such, and the good ol' spinal tap. My wife was with me for that, and later told me it was a REALLY good thing I hadn't seen the needle.

Did you know in your gut that you had MS before you got the official diagnosis?

Yeah, I had figured it out, and I was pretty certain, so it was more of an official confirmation when my doc told me.

What was your reaction to hearing that you have this disease?

At first, I thought it was a little scary but not really a big deal. It didn't really seem to affect my life all that much. I didn't want to tell the kids, for fear of upsetting them, but I did after a day or two. It quickly became apparent that I was no longer going to be able to do a lot of things I really loved - working with a chain saw was definitely out, and climbing and hiking and skiing, and later, doing much walking at all, I just couldn't do. My legs (mostly the right) just wouldn't. So there was some mourning. there still is - a morning when i struggle to get into the shower, and have to sit down while I wash myself, I have a little cry and repeat, "I don't want to have MS any more." my son and I had gone to Acadia national park for many years, since he was a little boy, camping and climbing and hiking. Last summer we went back, but we stayed in a motel, and drove thru the park, and he said, without thinking I'm sure, that he wished we could do one of our favorite climbs. I had to tell him that I did too, but I just couldn't. That was very hard for me. So it's been a slow process, getting my head around it, accepting that, each day, this is as good as it's going to get. The things I've lost, barring any amazing discovery in remylenization, are gone. Without a support group of people who really understand ms, I feel pretty alone.