I have secondary progressive multiple sclerosis and I am rare.
In honor of Rare Disease Day on Feb. 29, I honor myself. I honor you and anyone else with a rare disease.
I have been asked if multiple sclerosis qualifies as a rare disease. It does if you have MS. I became rare on Nov. 6, 2010.
Rare is in the eye of the beholder. It is also something to behold. In and of itself, it is synonymized with unique, extraordinary, and priceless. Preceding disease, it is overtaken by syntax. Rare becomes unknown, elusive, and guarded. The simple addition or exclusion of a word can shift perception. Yet no shift of words can alter my reality.
For that I am grateful.
My diagnosis with MS was an invitation. A summons to witness my own metamorphosis. Growth through painful trials is indeed rare. The cocoon of the frightened girl gave way to a woman ready to fight. Each trial serves to create a better me. A more grateful person. A stronger advocate. The friction has allowed me the clarity I would have otherwise never acquired. And much like a diamond, I shine.
Yet much like diamonds, the pressure can be immense. The stigma, disability, dependence, loss of income and intimacy, lack of insurance coverage, and litany of painful side effects are constant. They do not take a day off. They do not disappear with medication, meditation, or mantras. At times, they get worse. Sometimes, a great deal worse. From 72 hours of spasticity-induced insomnia to the inability to feel half of my face.
This makes me rare.
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