First of all, what is Ankylosing Spondylitis (AS)?
Wait, how do you even pronounce it?
Ankylosing Spondylitis (An-kee-low-sing Spon-dih-ly-tuss) is a disease that causes inflammation throughout the body, especially in the spine and low back, and can cause bone spurs to fuse joints together, typically in the spine. As you can imagine, extra bone growing in your body that’s not supposed to be there can be quite painful. Additionally, since AS is systemic it can also damage organs including the eyes, liver, lungs, and more.
So now that you know a teeny bit more about AS imagine you are the one who was just diagnosed with it.
Congratulations are in order simply because you are reading this blog post. It’s difficult to believe, but I often hear from people whose family and friends shun them for “faking being sick.” These same family and friends often don’t make an effort to learn what their loved one is actually experiencing. So thank goodness you believe your friend and want to learn more.
…Of being a Democrat. Because we try to put in place policies that protect and assist the poor, the disadvantaged, the disenfranchised, the marginalized, the needy…people who are less-than by no fault of their own. I’m proud of being a Democrat because we don’t expect everyone has the ability to pull themselves up by their bootstraps but we do want everyone to flourish as best they can with the same or similar opportunities. I’m proud because we reach across the aisle even when our hands are slapped over and over, we accept defeat graciously and we continue our work even if we can’t have the title ‘President’ or ‘Senator’ on our lapel pins. Continue reading I’m Still Proud→
We say it would never happen here. It could never happen to me.
But it did happen. It happened to us. It happens every day, on street corners, in homes, at workplaces, on Facebook. Hatred isn’t always seen. Homophobia isn’t always obvious. But they’re always intrusive and divisive.
We on the receiving end are accustomed to being wary of holding hands or kissing in public because we know someone could be watching and choose to target us. Fear builds. And builds. And builds until we hide our identities, even from ourselves, when we leave the safety of our homes or keyboards. Some of us can’t hide (or pass) because we look too masculine to be a woman, too feminine to be a man, too gay to be straight – too much “them” to be “us.”
Queer love and existence has always been more private out of necessity and out of fear. We are keenly aware and constantly reminded that there are people who hate us for who we love or how we identify. It could be anyone, so we tread lightly in public, many of us. And now we are pushed even further back into our homes, our bedrooms, our closets…because maybe these are the places we’ll be safe. The only places we can be safe, maybe.
I have ankylosing spondylitis and several mental health issues. I asked my mother some questions about them impacting my life. Here’s what she had to say:
What was I like as a child?
You were always physically active – as a baby, stretching and leaning toward what you liked/wanted. You enjoyed crawling, walking, later bicycling. I enjoyed watching you do backbends and cartwheels at about ages 6-10. You wanted to be scored – 1-10 – as though in the Olympics. You loved kittens and puppies. You enjoyed holding them and carrying them around. You were inquisitive. You were very shy as a toddler, often hiding behind my skirts or my legs so you would not have to talk to people who addressed you. You enjoyed spending time with people of all ages as you became an older child. You became friends with adults and enjoyed learning new things such as tennis and fishing from your grandparents. I had come to believe that “it takes a village to raise a child”, so I encouraged your independence in going alone by bicycle into our village and forming many relationships with nurturing adults there. I allowed and encouraged you to be outspoken to the point of some thinking you were “too sassy”, but I believed that as a female in this society, you would need to be able to speak up and take care of yourself as you grew up. There could easily be a book about how you were as a child, so this will have to be an incomplete capsule.