It was only about five years into my diagnosis — after my personal life and medical existence had been spun and tumbled like a load of cleaned and dried laundry — that I finally made my way into the world of patient advocacy organizations, most notably the National MS Society. Back then the society’s color brand was red. In fact, most MS Societies around the world, many members of the MS International Federation (MSIF), used the same shade of red to identify themselves.
When Red Turned to Orange, Mostly
A couple of years before I moved to Ireland, that color changed. Out was red and in was a deep shade of orange. Orange, it would seem, was the new red. As a proud Irish American, the color orange had connotations that didn’t set easily with my notions of my “Irishness.” Now fully aware that in Ireland my attitudes would be called “plastic paddy,” I also note that the MS Society of Ireland still uses the old shade of red so I mayn’t have been so far off the mark after all … But what do these colors really have to do with MS?
Why Not White as the Color of MS?
On a recent walk with my wheaten terrier, Maggie, we passed a house with several strands of Tibetan prayer flags in many colors. It got me thinking about all those colors of MS, as well as of the term “spectrum of colors” and also about spectrum diseases. My wife works with people living with autism spectrum disorder (ASD) — meaning that the disorder has a spectrum of manifestations and symptoms. In that respect it’s not unlike MS, but we couldn’t represent MS with a rainbow. That would not only usurp people with ASD but the LGBTQ+ community as well. Then my mind went to the physics of color and light. It was a long walk … Color is, as we all learned at school (and some of us have forgotten), the reflection of visible light. Visible light is a spectrum of (lowest to highest wavelength) red, orange, yellow, green, blue, indigo, and violet. ROY G BIV was the way I learned to remember the colors. Pure white reflects all of those colors in equal proportion. That being the case, one could argue for white as the color to represent multiple sclerosis, since there are so many different symptoms emanating from the disease. But I tend to think of the opposite of white as more appropriate, for a number of reasons.
Black Seems More Appropriate to Me
The opposite color to white — because it absorbs all colors, or all light, rather than reflects them — is black. For me, black seems more representational of my life with MS than white (or red or orange or prism tape). My life with MS looks black because I absorb all that the disease has to give, and I get on with living. We take on all that it forces on us, and we still show up for the day. We try not to reflect all the pain and difficulty that the disease shines on us, but rather we shield those close to us (as much as we can) so they are not shaded and jaded by the radiation of our symptoms. Those of us with MS don’t reflect it back onto the world. We suck it up, and we let the world be brighter for not knowing the whole of what we have taken on. Our black is not one of mourning but rather the color of life’s bruises left on our person. It is not sadness alone, but rather it is all of the emotions we can experience in the flash of a moment because of and in spite of the disease.
Our Black Is One of Density, Not Nothingness
Black is not the nothingness of a life unfulfilled, of dreams stolen, of hopes dashed. The black of our disease is the whole of life squeezed into a small space in which we try to maneuver. It is everything, not nothing. It is a representation of every aspect of the life we live, not a reflection of absences from it. And, sometimes, it is the color of me fading into the shadows when the rest of the world is bright and reflecting their colors. For me, my MS is best represented by the color black, but I don’t mind. I think we look good in black. Wishing you and your family the best of health. Cheers, Trevis
