Over the past eight years I’ve gone from lost to found and back to lost. Whatever those seven stages are they seem to be on a loop. I’m out here dealing with Ankylosing Spondylitis and no one understands. They don’t understand the pain and daily struggles. They think my fear of what’s to come is irrational like I should just ignore the possibilities. They can’t understand it because it’s not reality for them. When I first found the Spondylitis Community I felt so relieved because I knew I wasn’t alone. I had this thing but I could handle it and knowing there were others out there dealing with it made it seem a little easier.
Then when the seizures started and they found the brain lesions I was thrown into a darkness and had no idea how to find my way out. Doctor’s can’t help me. They can’t treat my Spondylitis or Lesions. My Epilepsy Meds are barely working to control my seizures. I can’t seem to relate to any of the support groups for any of these disorders. Looking back at the past three years I can see that I’ve withdrawn from all my support groups. I don’t know where I’ll be in another eight years. With AS you just have to take it as comes. Once you think you’ve got things under control you’re thrown a curve ball and have to find a new way to live your life.
So I’m learning how to live with all AS has given me once again. I’m finding support where I can. We all were given unique challenges with this disease and I now know I’m not alone in that. Even if we’re not fighting the same battle we’re dealing with the same issues. We all feel isolated at times. Writing is one of the ways I deal with this. Here is one of my latest poems.