In late summer 2005, I developed a condition called Transverse Myelitis. I ended up in the hospital, paralyzed and terrified. Once the diagnosis was made I was started on a course of IV steroids and within hours my symptoms started to abate. So I figured this was a one shot deal, a freak occurrence. I found out later that it was clear at that time that the TM was caused by Multiple Sclerosis. But no one told me.
Instead the condescending little snot of a neurologist that I happened to get in the hospital told me at 50 I was “too old” for Multiple Sclerosis. He did not tell me my spinal cord was alight with old MS lesions.
I switched neurologists. I liked the next one I went to, a seemingly considerate and pleasant young woman. But even she did not tell me.
Within six months a relapse landed me back in the hospital. My doctor stood at the bottom of my bed and told me there was a new lesion, this one on my brain.
Me: So does that mean I have It?
Her: Looks like It.
And she left. Neither one of us even used the words “Multiple Sclerosis”.
So that is how I was told I had an incurable, crippling disease. I was all alone, in a hospital bed. I don’t care how hard it is to give someone bad news, this was cruel and utterly unacceptable.
I’m now on my third neurologist. He is respectful, talks to me and answers my questions honestly. Sometimes a little too honestly. Because I still have trouble accepting it, I will occasionally ask “Are you really sure about the diagnosis?” And he will reply cheerfully in his cute Australian accent, “Oh, you DEFINITELY have MS!”. Sigh.
In my head, I have thought about what I would imagine the ideal scenario to be. I’m not greedy or excessively needy, so it wouldn’t involve hand holding or even inordinate gravity or sadness. My model is simple. I would have liked someone to tell me unequivocally but gently. I would have liked to have had the option of having a loved one with me. I would have liked someone to tell me they were sorry I had this, but that we would work together to manage this brutal illness. In other words, I would have liked to have been treated the way anyone would like to be treated: kindly, compassionately and sympathetically. That should not be too much to ask.
