My MS Daring Disguise

Picture this…a warm smile, a coy grin, lovely hair well-coiffed, flawless make-up, and a figure and form sporting casual chic or dressed to the nines.

Our life with Multiple Sclerosis has become a dichotomy of sorts. The inside of us does not always match the outside, and the outside does not always match the inside. This experience of an unwanted contradiction of being seems to plague us incessantly.

There are many instances in which a person, who happens to glance my way perhaps while sitting at a restaurant or movie theatre, would not be able to immediately perceive there is something “different” about me. No, not at all. That is, not until I stand up quite gingerly and slowly, and I begin to walk at a snail’s pace with careful steps. Yes, and then as I clutch my companions arm or hand to guide me. This because I can’t see clearly and blurry vision hinders my mobility; or as I step forward my legs become wobbly due to extreme weakness; or I sway to and fro because I’m dizzy due to vertigo and have no balance. Only then, do they, both strangers and perhaps some family, realize my outward appearance is a disguise.

So very familiar to us is the phrase we often hear, “You look so good”, sometimes predicated by an oh, a but, or both words thrown together. Did I inadvertently or did I intend to bring this compliment upon myself from those that know I have MS and even from those who did not? Well, I ask, isn’t it my right to look as good as I can and to be my personal best regarding my appearance? Dare I? Should doing so somehow minimize to those concerned or curious, my genuine discomfort from the neurological malfunctions going on inside my body that people cannot see? Is it not an important and a worthy point to exercise control to feel good about myself? Even about something as “superficial” as appearance? On those days that I don’t want to wear sweats and want to look especially nice, can I admittedly, indulge myself? Yes I can.

After all, during the MS experience, we have lost control over many things. Some, temporarily others permanently. Some external, some internal. There are obvious ones like our mobility, dexterity and vision. Even more include an occupation, independence and the ability at times to think clearly and to have peace of mind. Frankly, even our bladder control is on the list.

So, here we are, caught in the conundrum of a perpetual authentic disguise which we, at times almost dutifully, wear very well. This begs a question (or several) I must ask because I am curious. First, how am I supposed to look? How do they want me to look--disheveled, unkempt? Would that make people understand how absolutely difficult it is to get up every day and painstakingly prepare my mind and body and for activities to mingle in a world that only sees and hears what it wants to anyway?

Well, I am not going to do it. I won’t succumb to preconceived ideas of how I should or should not look with MS. I don’t have to. I will not give away my power to others to determine or diminish my self-esteem by replacing my judgment with their fickle notions.

Rather, perhaps I’ll just take my druthers and continue my aptitude for self-care and well-arranged dress, with a dash of vanity, allowing them to say with all intended compensatory sentiment or with the utmost sincerity, “You my dear, look simply marvelous!” And if I choose to, I will continue to smile.

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