It was just a few weeks ago that I looked at my wife, Mandy, and asked with some trepidation, "I don't mean to sound crazy, but are you SURE that you've still got Multiple Sclerosis?" Hope, it seems, springs eternal and although I consider myself a pragmatist, I still fall victim to its seductions. Mandy looked at me quizzically, and said ominously, "Yes. I'm sure." The look on her face made me realize that I had asked a very foolish question because even though we were now nearly five months without any major relapse, the MonSter stalks Mandy every day. She feels it, but has become very good at hiding it. As for me, I fall victim to 'out of sight, out of mind.'
Mandy works part time. This morning as she was getting ready for work, I asked her how she felt. "I don't know. I'm debating whether or not I can go to work," she said. The relapse came fast this time. In just a matter of days since I asked my silly question, Mandy has fallen victim to a full blown relapse. She told me that she knew it was coming even as I asked her if she thought MS had retreated. She just didn't want to say anything. Like I said, she's gotten much better at hiding it, even from me. Mind you, I'm normally very observant.
Knowing that she does not like to give in to MS, I suggested to Mandy that she let me drive her to work -- something that I've been doing now for about a week -- and if she doesn't feel she can make it through the day, then I'd come back and get her early. She agreed and, since I haven't heard from her, it seems like she's going to make it. It's days like this that remind us why I chose to work freelance out of our home. With no family nearby, we have learned to depend solely on each other. I'm sure there are many reading this who are nodding their head with understanding.
It won't be long now. Within another day or two, Mandy will not go to work. That will last for perhaps a week, after which she will slowly start to feel better and the cycle will resume. We've been told by doctors that MS is not supposed to exhibit this type of cyclical behavior, that there might be some underlying cause. If we allow it, this will normally be proceeded by a round of very expensive tests, all of which will show absolutely nothing or, worse, something that they've never seen before and simply can not explain. They speak of research studies and theories of specialists, but the reality, as we have learned through first-hand experience, is that MS is a disease with a personality. And no two personalities are exactly the same, no matter how much you'd like them to be. It's part of what makes it so difficult to both diagnose in the first place.
They're still trying though -- and there is some promising signs of progress. In fact, Mandy wrote in a recent post here on MultipleSclerosisCentral.com about an absolutely breathtaking study that is taking place at Northwestern University Feinberg School of Medicine where MS patients' own stem cells were removed, had their immune cells destroyed, then implanted back into the same patients only to then behave normally, no longer attacking myelin as invading cells. From what I understand, there is some discussion that this procedure, or whatever emerges from this research, may actually be able to reverse the effects of MS providing permanent damage hasn't already been done.
That, dear reader, would be a miracle, and I, like most of us, still desperately want to believe in miracles.
Published On: February 12, 2009