I saw a graphic on Facebook, you know the kind that people put up in their statuses “If you know someone that has/does/suffers from/feels like XYZ, then share this for an hour…” and it was enough to make me want to cry. Why? Because my wonderful slave, the woman who is the perfect fit for me, she has a disease that is one of those silent, invisible illnesses – she has lupus. And last night, the discussion we were having about “what do we want to do 20 years from now…” and all she could say is “just be around here to see 20 years.”
Wow. We go through our lives, living as we feel we must, and there are many among us who go through life just appreciating the fact that they have another day. I’ve done that for awhile since she was diagnosed in 2009. Each day, that small reach over to the other side of the bed, because you know, you just have to make sure.
But to hear that… 20 years. I’ll just be shy of 70 and the way I feel, I am not feeling my age right now. I always had a mental image of 75 to 80 would be an age I’d want to go to… but to be hopeful and lucky that a silent invisible disease won’t take my partner before then… that was pretty intense.
We all know people who suffer through these diseases and issues daily. There are some days when some people can barely get out of bed, where each breathe or each step feels like agony – and yet they have to live their lives, they have to keep moving forward because if they don’t… they die. It’s not like missing a leg, having a horrible burn, or some disease where you can “see” it… these things are invisible and terrible and yet nobody “knows”. There’s not only the self-sense of loss, of change, of being denied dreams of 20 years of activity, only to be looking at 20 years of increased pain and issues – but there’s always the stigma, the whispers, the “oh, is she REALLY sick?” and the “Oh, you don’t look sick…”
Angie and I are going to be talking a lot more about lupus, about how these sorts of illnesses and disabilities affect our Master/slave dynamic. We’re going to be doing fundraising for lupus research and education. We’re going to be hoping that others will stand with us, either in support or in solidarity, because these issues affect a lot more people than you might think. Fibro. Crohns. MD. Lupus. Diabetes. MS. Mental illness. Autism. And the list goes on… but it’s there. It’s something that affects us. And it’s OK to talk about it, to say “this is what we go through, we’re not looking for sympathy, but just understand if we’re a bit slower, if we don’t play like we used to, if we miss an event now and then… it doesn’t mean we’re not us, it means we have a lot fewer spoons and heavier burden.”