Another Rare Disease Day came and went, and once again I didn’t do a damn thing to acknowledge it. I just let it pass like an ordinary day like I always do. And I feel terribly guilty about that.
Rare Disease Day has happened on the last day of February every year since 2008. As it approaches, I get all anxious and intimidated because I feel like I’m supposed to be doing something in observation of it, but I don’t know what to do. It’s kind of like Presidents’ Day in that way. I prefer holidays where everyone knows what you’re supposed to do. Like on the Fourth of July, you shoot off fireworks, and on Thanksgiving you eat like a damn pig. Everyone knows what you’re supposed to eat on normal holidays like these, too. On Thanksgiving you eat turkey, and on the Fourth of July you have a barbecue. But what do you eat on Rare Disease Day? As far as I know, there isn’t anything like a traditional Rare Disease Day casserole.
I feel compelled to somehow mark Rare Disease Day because I assume when those who thought it up talk about people with rare diseases, they think they’re talking about me. I’m not sure I agree. First of all, I don’t think it’s accurate to call that which makes me crippled a disease. I don’t feel like a diseased person. To me, a disease is something like typhoid. And to me, a diseased person feels miserable all the time. But way more often than not, I feel perfectly eased.
But OK, just for the sake of advancing this discussion, I will concede the point that that which makes me crippled can be accurately characterized as a disease. Is it rare enough to make the cut? Because again, in my mind a rare disease is something like scurvy. I’ve never known anybody with scurvy, so it must be pretty rare. But I’ve known lots of people with spinal muscular atrophy, which is what makes me crippled.
According to the Rare Disease Day official website, a rare disease affects less than one in 2,000 people. I guess SMA qualifies as both rare and a disease, according to Cure SMA, an organization that sends me a lot of emails. This is a great stroke of luck for them because it creates a golden fundraising opportunity. One of their recent emails said an excellent way for me to “show my power” on Rare Disease Day would be to donate to them. Another recent email said an excellent way for me to “celebrate” Rare Disease Day would be to donate to them.
But is celebrating the right approach? Shouldn’t we people with rare diseases be mourning instead? Aren’t people with rare diseases supposed to be suffering 24/7? Isn’t that the meat of our sales pitch? If people who don’t have rare diseases see us all out celebrating, won’t it negate all that precious negativity?
On the other hand, why should we of the rare disease community be ashamed of ourselves? Maybe it’s high time we shed that albatross and declared our pride in who we are. And maybe the undiseased majority will be sharp enough to embrace the subtlety of our message. I’ve heard Christians say, “Hate the sin, love the sinner.” Maybe this will be a case of, “Hate the disease, love the diseased.”
So that makes me think that what I ought to do for next year is organize a massive Rare Disease Pride Parade. But might that be too over-the-top? It’s one thing to go around being all proud of yourself even though you have a rare disease. But it’s quite another to emblazon the names of our rare diseases on an armada of colorful floats being led through the city streets by a marching band. Is the undiseased majority ready to accept such an audacious display? And who among them would come out to witness this parade? Our first obstacle would be to convince everyone that even though we have rare diseases, we aren’t contagious.
Can you see now why Rare Disease Day gets me all tied up in knots? It makes me want to hide under the bed until it goes away, as if I’m trying to escape somebody with a rare disease.