Mirror, mirror on the wall. Can I pass for normal, at all? Most of us grow up with a sense of what it means to be normal, to be accepted in society. We attend school, and are taught to behave a certain way. We want to be liked by others and to fit in. I was lucky enough to have friends who, like me, liked to think outside the box. All of those stares I received in my younger years due to my not so normal hairstyles and clothing choices, helped prepare me for the stares I would receive later in life, post ALS. Using a walker or wheelchair is a sure way to get a second glance out of nearly everyone. Add to that a leg brace, a neck brace, or ventilator, or whatever you happen to need to carry on, and soon you have the entire world (or so it seems) staring and wondering what the heck is wrong with you. You might need to adjust your sense of normal, or just forget about trying to fit the normal mold altogether. When you are no longer doing your own hair, your voice sounds different, and nothing seems to fit right on your sunken in shoulders and chubby stomach, (all common if you have ALS) it can make you feel like you don’t look quite like your previously normal self. And, you probably don’t. But, so what? And after all, what does it mean to be normal anyway? Is being married for 31 years normal? Is being happy almost everyday, even though you’re living with a terminal illness (and isn’t everyone technically terminal anyway) normal? Probably not. So, it seems like maybe I’m just destined to fall into the Abby Normal (Young Frankenstein fans) category. And, it does secretly make me feel better when I am out and about and notice people I know who look quite bad, even though there’s no reason they couldn’t have combed their hair and put on a clean shirt before they went out to dinner. I know that’s really horrible of me, but if my hair looks terrible, it’s because I can’t use my arms and rely on my husband to style my hair. If their hair is a mess, it’s more than likely because they just don’t care. And why am I so concerned about how I look anyway, you might ask? I know, it seems like I might have much more to worry about, but I feel like I should have little cards made that I can pass out (I don’t know how …you know with the whole non working arms problem) that say something like, “Please know that my wonderful husband has helped me get dressed and fix my hair because I have ALS and can’t do it myself. If I could, I would be wearing matching, stylish, well fitting clothes, have my hair styled and makeup on. Fortunately for me, my husband thinks I always look great. Unfortunately, like most husbands, he is often wrong. LOL ”
I try to remember, and take, my daughters advice. She always says, you are never going to see any of these people again, so don’t worry about what you look like. She is usually right. Although, sometimes I think she says that to get out of doing my hair or makeup! I sometimes go for weeks without ever even looking in a mirror, and it’s amazing how when you don’t know if your hair is a mess, or if you might look better with a little make up on how much better you feel about yourself. If I don’t know about the spinach in my teeth, I can’t worry about smiling and someone noticing it. Right? That being said, if that ever happens, please just tell me, “Hey, you need to floss”! Life is too short to worry about anything, and in the grand scheme of things, if you are happy that’s all that really matters, right?