I finally felt like myself again on Wednesday. The recovery from the spinal tap was worse than I expected, but I’m fortunate to be back to normal as it takes much longer for some people. Because I had to lie down a lot, I didn’t notice until I was feeling better that my right leg has become quite weak. My foot drags unless I consciously pick it up when I walk, which is difficult because my knee wants to buckle unless I’m thinking about that all of the time, and my balance is off. I have to get up very slowly, clutching a chair or a wall, something to stay upright until I find my footing. In my mind, I look like the Scarecrow from the Wizard of Oz; in reality, I probably look a little drunk. I’m not ready for mobility issues because of MS. It’s too soon. This is mild so far and will hopefully mostly go away like the optic neuritis did, but it’s scary to be here already.
When I was suffering with optic neuritis, my vision was affected, but that was more acceptable in many ways than the weakness I’m feeling in my leg now. I could still move around normally then, and when my eyes were too strained, I could wear a patch to let my good eye do the work. I was exercising every day, my body still strong and reliable. MS was still an abstract concept, and it is for everyone who hasn’t experienced it for herself. Trust me on this: you really don’t know until you know.
Perhaps this is why so many well-meaning people offer advice and articles, quick fixes or basic information about MS and overall health when they hear about my diagnosis. I understand the impulse and have likely been guilty of it myself in the past. After all, when we hear someone we care about is sick, our natural response is to try to make it better somehow, to be helpful. But it’s not helpful to assume the person doesn’t know what she is going through, that she hasn’t researched it–obsessively, in my case–and learned about it. I know more about MS than I ever wished to, have read not only the basic information online but countless journal articles written for neurologists and MS specialists. Doing that kind of research makes me feel better because I want to understand what is happening and why, what the benefits and limitations of treatment can be, what’s next on the horizon. People who have some understanding of MS might ask about Vitamin D or B12 levels, but they’re not going to suggest you go gluten free or vegan as a magical fix. They’re not going to question your diagnosis or refuse to accept it.
So the next time someone tells you that she is sick, suffering, instead of trying to fix it or refusing to accept it, ask her instead to tell you about it. Listen. Sympathize. Encourage. But don’t try to fix it. Hard as it may be, you can’t fix it anyway, and understanding that will help you move closer to supporting that person in the ways she needs.