Several weeks ago I returned to my neurologist's office for an adjusted diagnosis following my most recent MRI. I had begun to notice a searing pain in my upper thigh/ groin area sometime before Christmas and thought perhaps it was connected somehow to knee repair surgery I'd had in early December. The knee surgeon found this highly unlikely, so I turned to my OB/Gyn doctor for my annual exam. It was perfect. Their office urged me to see the MS folks. Finally, thinking it an absurd waste of more time and appointment waiting, I did. I endured ultra sounds (two) and the ever-fun electrocution type thing they do to stimulate one's nerves. It sets mine on edge, the nerve conduction study. I passed all of these tests like I usually did my final exams in college, with flying colors. Then the MRI. I was so unconcerned about it (still wanting this to be somehow connected to the nerve block the knee surgeon had done once I was asleep and learned about only after it wore off) I forgot to order a Valium or two to fight the claustrophobia I always feel inside the coffin of the MRI clunker.
I should have known when the PA would not look me in the eye, and when a trail of medical students followed her into the room (I said I didn't mind) all toting notepads, that the news was not going to be good. I simply was not prepared after surviving and sometimes even thriving during seven full out years of relapsing/remitting MS to hear that I had graduated to a new kind. I'm used to lesions in my brain and neck. I was unprepared, however, to hear her say that they have now taken up residence in every sector of my spine, including my sacrum, accounting for the knife-stabbing pain in my most private places.
“Gail, what are you really saying?” I probed. “This too shall pass, right? Like the blindness? Like the time I couldn't feel the bottoms of my feet? Like the time my left arm played dead for three months?”
Again, Gail stared at the floor. In the meekest voice I've ever heard the woman use, she said simply, “I'm so sorry Ms. Hillard, but your MS has progressed to rapidly progressive MS.” Not knowing the latest lingo, I asked, “Secondary or Primary?” She said I should really wait and ask the doctor about that.
“So it's primary then,” I lobbed.
Her head jerked up, her eyes meeting mine, “Why do you say that?”
“Simple. You just delivered the bad news. If there was good news/bad news, you would want to tell me, especially in front of these students. Therefore, it has to be bad news/bad news so you'd rather not say.”
I limped to my car, my knee and groin still smarting, and calmly unlocked it, inserted the key, put the top down (I drive a French vanilla ice cream color new VW convertible because it makes me happy and seems to have the same affect on other drivers, a big smile crossing its hood and smiley headlights), backed out of the garage and called my mother. Then I burst into tears.
Now please understand, I am simply not a person who feels sorry for herself. An old friend once gave me her cane (she overcame MS after having it for 20 years) and I accepted it as a good luck token and because it had a round ball top that half unscrewed to reveal a compass and all the way unscrewed to reveal a tiny flask. I thought it might come in handy on a few counts if ever it came to that. It never has, including the knee surgery. I spent most of my life as a runner. Hence the rotten knees requiring arthroscopic tune-up. Now I am a walker. I walk through things. I walk past things. I walk onto and off of airplanes, even after I fell while visiting a sister in Spokane and actually fractured my left kneecap on Good Friday. Yes, the same one I'd just had fixed, darn it all. But even on crutches, I decline wheelchairs. I am, I submit once more, a walker. The other reason I accepted the cane, never believing I'd actually NEED it, was because I wanted Patty's good fortune to rub off on me. I wanted the MS to leave me miraculously.
A few nights after the grim doctor appointment my daughter (age ten) and I were up late on a Friday night watching Dr. House on cable. He had a teenage patient whom they suspected had rapidly progressive MS. Dr. House lamented in his acerbic way that it was “not the fun kind of MS with the 10k's and the bike rides and the balloons for the gimps in wheelchairs, but the serious, zero to sixty in a few months, then in a chair, then on a respirator, then in the ground.” I may be paraphrasing slightly, but I doubt House would mind.
