“What happened, did you hurt your leg?” And there it was, the random question I knew would come but hoped would not. The question came from a familiar face, though not someone I knew well. She fell into the “school mom friend” category, someone whose son or daughter had been in the same class as my son, our paths crossing at various functions over the years. She had not subscribed to my blog, nor were we Facebook friends or she most likely would have known the answer to the question.
Ah, the question. I hesitated for a second, wondering if I should say I’d worked out a bit too hard or tell the truth. Finally I blurted out, “Oh, I have MS and my leg drags a bit.” Her response, not surprisingly, was a flustered, “I’m sorry, I didn’t know.”
Wanting to make her feel more at ease I babbled away with some light hearted comment. “Well, it’s a recent development, just getting used to it myself, ha,ha” or something equally benign. I felt a bit awkward for making her feel awkward which made the situation all the more, well, awkward.
This was the first time I had to “come out” to someone I did not know well. I’ve been able to “pass for agile” most of the time, but the last few months it has become more obvious. I don’t know what is worse, for people to think I’m way older than I am, that I’ve been drinking most of the day or ask the question which will prompt me to snap out a clever comeback or tell the truth.
If people ask, I give them the benefit of the doubt, that they are coming from a place of caring and concern and remind myself to be grateful rather than annoyed or embarrassed. That said, it is easier than it seems. A person in a wheelchair may prompt the thought, “Hmmm, I wonder what happened?” I now feel that I am the reason for the same question as I walk along with my awkward gait. Damn, lots of awkwardness here, but that’s the nature of the disease.
It will take awhile for me to become comfortable in this new territory. Behind the immediate flustered reaction, there is a deeper reason for my dread of “the question.” If people are prompted to ask “the question,” then it is clear my ambulatory shortcomings are more obvious to the world. Day to day, I do my best to carry on rather than dwell on what has changed in the last three months, six months, two years, etc. I’m not in denial, I’m reminded all too many times, I just find it more helpful to focus on what I can do rather than what I cannot.
This is the new normal for me but to be asked “the question” is a reminder that no, this is not really normal. I’ve learned to accept help and more often, to ask for help. My view is people are basically good and have a desire to help one another. I don’t see asking for help as a sign of weakness, rather a sign of reality and a way to stay engaged in the world. Help is what makes it possible for me to get groceries, climb the bleachers at my son’s band performance and get the good parking at the mall so I’ll have the energy to shop and make it back to the car.
To be out in the world is better than staying shuttered away. There are days when it is more difficult to be out, but I feel better for opening the door and going outside, even if it means there are awkward questions waiting to be asked and answered along the way.
Regina Stoops is a comedian, writer, MS Warrior and Autism Mom living with her wife and three kids in the San Francisco Bay Area. Click here to subscribe to her Normal Notes blog.