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.
Climbing Downhill 
A couple years ago the Ringling Circus had an audience participation story line that centered on a theme of strength, courage, wisdom and heart. Those are the same personal characteristics you share with everyone in your Climbingdownhill blog.
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I think it would be more romantic to be a trapeze artist, but the circus can be a happy place where clowns are your friends.
This is a great way of looking at our lives with MS. If had a dollar for every time someone tells me I’m looking good, I’d be, well not rich, but certainly richer than without it. Sometimes I tell them, it’s easy to look good when I’m sitting down, but take a look after I’ve been standing up for a while …
Speaking out about what life is like with MS is a satisfying thing, if you can help someone else get an inkling of what you’re dealing with. But for many, a broken arm or leg is more worthy of understanding, because it’s visible.
Keep up writing about it, and I’ll do the same, and more of the world will understand.
Thanks for your valuable comments Carolyn.
I think that our pains should emit frequencies; the higher the pain or discomfort the more obnoxious the sound. Wouldn’t that be lovely in the grocery store or when browsing in Hobby Lobby? There are a lot of people who suffer silently. These noises could raise a lot of awareness! Thanks for an interesting post.
That’s funny to think about but yikes nobody, including me, would want to be with me. I’d sure prefer my pain not cause others pain. Would make for a good Twilight Zone episode though!
When I was little there was a story about a princess who deliberately sinned. A good witch told her she must be punished, but gave her a choice: be ugly and normal or be beautiful and unable to communicate. All our ugly is inside where no one can see it. And we can only communicate when people want to know. I see myself as the princess—both choices accepted. Sometimes MS is visible, in my lameness. Sometimes I am beautiful but cannot tell anyone why life is such a struggle. They don’t know my sight and hearing and continence is all a mess, except when they see the cane and the handicap hanger in my car.
That’s deep stuff, Pat. Nothing like a story to bring it home. Thanks for sharing it.
The circus has always been in town. It was in town when you were flying airplanes and such. However it all depends on which ring we are watching in a three ring circus, as to what we see. After all as some hack writer once said “all the world is a stage…”. We just do not get to write the story we must act out on that stage. By the way I like lots of butter on my popcorn. 🙂
And this is profound truth from a wise man. Thanks Charles, popcorn with extra butter coming up….
A wonderful post! Im actually dealing better with the whole thing now my mobility is affected, and quite extensively too. These days I find it encouraging when people tell me I look well because it is very obvious there is something badly wrong now I can hardly walk and have no use of my right hand. So they know only too well there is something wrong and their comments are well received. It helps me to realise how I have been looking after myself is working. Ive been concentrating a great deal on diet and I do look much healthier than I did. It was in the early days I struggled with other people telling me I didnt look as though there was anything wrong. Even the doctors told me it was all in my head for years.
Dont get me wrong there are days when I look and feel awful, but on the whole things aren’t too bad at all. Of course if I could have my legs, arm and hand back I would be very ready to accept them! 😊
Also the insight I have gained in the last three years or so has changed my whole outlook on life and I like the me I have become at last.
I like the drawings. I like to think that the hug is like licking a nine volt battery. So, nobody can see how that person feels but they feel it. (Somehow this is hilarious to children to do to other children. Anyone not licked a nine volt battery? Anyone not had a hug?) The paralyzed limbs are just like a foot that fell asleep (and never woke up). The balance issues are just like wearing heels for the first time. Anyway, it’s all avoidable – the lesions are caused by toxins in our food and personal care products. Our bodies are fantastic at regeneration when given a chance free from toxins. If you are interested, please read more here http://jesusdiedandlives.wordpress.com Here’s to no relapses.