Step right up ladies and gentlemen. Within the walls of this circus tent are found many freakish sights known to man….outrageous phenomenons taking place right before your eyes. Among them is the incredible Disappearing Woman. That’s right, you will see with your very own eyes what cannot be understood by the mind and the cause of which cannot be explained. Vaporized from existence are functional areas of the body.
Perhaps it was the same for you. Maybe many are fascinated by it. For a time period of my childhood, I was intrigued by the thought of having the ability to be invisible. I imagined all the positive aspects of it, including being places where people didn’t realize I was present. Seeing and hearing what wasn’t meant for my eyes and ears seemed it would afford me a type of heightened knowledge and detective mystery solving excitement.
Of course I never did gain the ability to intentionally become invisible, but invisibility has unintentionally become part of my life. MS is sometimes called an invisible illness, described that way because the effects of MS are felt inside long before they are visible or evident to others. Some who are affected are frustrated because what is being experienced cannot be seen by loved ones and acquaintances. Later, as the disease progresses, it does become visible to others by the way we move or don’t move and the appearance of mobility equipment with or under us. As we become less able to move, the lack of movement can cause isolation. We begin to feel invisible to others and the world. With or without its visibility to others, those with MS are physically affected.
Either way, what if we COULD see MS? What if the parts of our bodies that are numb/useless or painful were actually visible to others? What if we really did appear to have holes in us where we are numb? What if we had red flashes where we are experiencing pain? What if stiffness and spasticity were different shades of green?
Because MS is different for each person affected, the effects would look different in every individual. MS has affected parts of my body but not others. It’s difficult to tell, even from the inside, precisely what is affected and to what extent. Depending on the day or the hour, it might be different; but if my MS was visible, this is what I might look like – front then back, then with spasticity/stiffness and pain. It’s not a perfect representation, just my best guess at this time. This was a challenging and uncomfortable thing to do.
If the effects of our illness were seen by others, would our symptoms then be more understood? Would it give our symptoms validity? Would there be more compassion from those we encounter? Would we even want to be seen as we really are, or is it more advantageous to try to blend in? I imagine it’s an individual preference. Or maybe it depends how we feel on any given day, or who we are interacting with. Perhaps the best scenario would be to have an on/off invisible/visible button.
There have been movies made about being invisible. Usually in the end, the soul with no body realizes there are more disadvantages to being invisible than there are advantages. Maybe its one of those “be careful what you wish for” things. While there are disadvantages to having an invisible illness, there are also advantages to being viewed as physically normal and blending in with others in a crowd. You realize most of those advantages in hindsight when your disability becomes visible. Then, with gait issues and the necessity of mobility equipment, you deal with new disadvantages of pity and insensitive comments from those who look at you, and indifference by those who choose not to look at you. Sometimes, having the effects of your disability invisible is preferred to having your whole self invisible. Either way, we are all different. Each person is unique – each physically able person and each physically disabled person. We can become victims of real and perceived perceptions and injustice, or we can celebrate the positive things about and in spite of both. It’s every individual’s choice. We can feel like a circus attraction or we can look around and realize that, in a way, the whole world is a circus. Some days we’re the attraction and some days we’re the audience.
Invisible or visible, we can enjoy the show during the time we have. Pass the popcorn and peanuts please.