Grief, Ankylosing Spondylitis, and a Tragedy in Indianapolis
Editor's note: this article has a mention of gun violence.
As I write this, in Indianapolis, about 15 miles south of me, a mass shooting has occurred at a FedEx facility claiming the lives of 9 people, including the 19-year-old gunman. The ages of those murdered ranged from 19 to 74, and 4 of those murdered were members of the Sikh community. A lovely part of our community who want to live their lives and raise their families. We in Indianapolis are heartbroken and true to form; we have entered a period of community and personal grieving.
It has caused me to reflect on the issue we seldom talk about in the ankylosing spondylitis community, which is grief. I will not bore you with the stages of grief; I assume everyone likely knows about them. If not, here is an article from Andrew Lumpe, Ph.D., about grief and chronic illness from the RheumatoidArththis.net website (they will not bite if you go over and read some of the RA content, I promise). If you would like a general primer on the stages of grief, I suggest The Five Stages of Grief on PSYCOM. They explain the Kubler-Ross Model of the stages of grief, and it is a clear, professionally written piece I refer to occasionally because of its clarity.
Instead of talking about the stages of grief, I want to speak about the most critical part of grieving, which is movement. Do you recall when you heard the words ankylosing spondylitis? I thought, what the heck is that about. Something I can barely pronounce and yet sounds incredibly complicated. Then my first thought, BS, that is just BS I don't have that. Those reactions are typical of denial the first stage of grief.
Then the next stage, bargaining. "Ankylosing spondylitis is not bad, something to make fun of; look at Rick; he leans forward." "He is the Leaning Tower of Phillips. Suppose Newton dropped a feather and rock off my head simultaneously with no air resistance, which would land first?" Maybe if I make enough fun of it, it will go away?
When I could barely walk straight, I got angry and then resigned, and finally, I chose to confront it head-on and do something about it. It's all in the grief model. No, I did not do them in order; people deal with these things differently. My path will not be yours and yours, not mine. I might skip a few steps, and you might do them in order, but however, we traverse the steps, the key is to keep going.
They tell me you cannot skip steps. I suppose that is right. I am still bargaining, and I still deny it. I am still angry about AS. But I am also hopeful, and I have a better perspective about where I am in my journey. Here is the thing, wherever you are, it is OK. It is healthy to be in grief. What is not healthy is to get stuck.
I fear Indianapolis will be stuck for a while. Just like I was stuck for some time as I tried to deal with this new thing called ankylosing spondylitis. Something I had never heard of until someone said, hey, you know you have this thing called AS. Great, I thought, load another one up. Why not. Like my city, where we have had three mass shootings this year. Sure, load another one up. The trouble is each new assault on our community, and each new symptom of AS must be dealt with.
With AS, we cannot just sit down and take the complications. We must seek ways to move forward. When I was diagnosed, I did not have a community, yet I knew I needed one to understand this new disease process. I am proud to be part of this community as together we seek ways to move forward. I hope you are also proud of our community for we are better together.
I hope Indianapolis will also find a way forward in our collective grief. Right now, our city needs to be a community. If we do not find a way to be a community and deal with this grief we are destined to repeat it. I pray we can move through it and not get stuck. But however, we move we must understand that when a 19-year-old kills eight people we have a problem.
Do you use the word disability to describe your AS?