Many months ago during a routine drug treatment I heard a happy commotion and looked up to see balloons entering a private room across the infusion center. Noticing my curiosity, the nurse checking my vitals offered, “Last day of chemo.”
My lips curled upward into a celebratory smile, but it was interrupted as a different feeling suddenly took my breath away.
“Oh,” I breathed in sharply, “I’ll never get balloons.”
I was crushed.
The nurse asked, “What are you receiving infusions for?”
“Ankylosing Spondylitis,” I ventured, waiting to see if I would need to explain the disease to her.
“Oh, yes,” she replied, “I have Rheumatoid Arthritis. Perhaps we can bring you balloons for your next infusion?”
Someone walking by offered me a cupcake. I shook my head, no.
I replied, “I don’t really want the balloons. I want a cure.”
I want the meaning behind the balloons.
I want an end to treatments. I want a cure.
My treatments, intravenous infusions every six weeks of a drug called Remicade, are supposed to slow down the progression of my lifelong inflammatory disease, Ankylosing Spondylitis (AS). It takes me a few days to recover from each treatment and I sometimes get migraines afterwards. Remicade also weakens my immune system, so I can’t fight infections adequately.
For me Remicade has been the most effective of the four biologic drugs I’ve tried, but I still have constant pain and fatigue and the disease hasn’t stopped its path of destruction. Even if I reach a point of so-called remission I will need continuous treatments to keep it “dormant.” I could be on this particular drug for the rest of my life unless a better treatment comes along. Or a cure. Or if my body develops antibodies to it. My options are extremely limited.
When I learned I had AS in 2013 the seriousness of it all hit me like a ton of bricks. I’d seen what it did to my father, a hunchbacked man with his organs slowly being crushed by the progressive curvature of his spine (called kyphosis). The disease ended up being the reason for his death. When I was diagnosed I wasn’t relieved to finally know the cause of all my symptoms; there was only terror. Would I be like my father? Would my spine fuse into a candy cane shaped column of bone? Would it slowly crush my organs and suffocate me?
The reality of my new life was bleak. I had a disease that would follow me to the grave or be the reason the grave came too soon. I was suddenly a diseased person.
Incurable. Sick forever.
The moment in the infusion center with the balloons brought all those thoughts back in an rush. My heart thumped against a tightening knot in my chest: the feeling of profound sadness. I couldn’t breathe, and this time it wasn’t because of the inflammation in my rib-cage.
Underneath all my advocacy and my can’t-stop-won’t-stop attitude is still the inescapable terror of living in a body that is literally stabbing me in the back for the rest of my life. I’m an alien in my own body – a body that will never get better and always get worse.
Incurable. Sick forever.
My Remicade infusions help, but I will always need them or a similar treatment. I expect I will participate in dozens, if not hundreds, of happy celebrations for people who are graduating from their treatments while I continue to sit in the same infusion chair in the same infusion clinic every six weeks for the rest of my life. And I expect I will see countless people who never come back to the clinic for other reasons – they either switched treatments or died, both of which could happen to me too.
I often wish for an end to Ankylosing Spondylitis, whether that’s death or a cure, just so I don’t have to continue suffering. And to be clear, I am not suicidal, I just don’t want a relationship with AS anymore.
Despite being a fairly common disease, Ankylosing Spondylitis is often overlooked and even treated as if rare. More people have a form of Spondylitis than Multiple Sclerosis and ALS (Lou Gherig’s disease) combined – that’s over 2.7 million people in the USA alone, and I suspect there are a million more undiagnosed simply for lack of awareness and education.
This story isn’t just about me. It’s about anyone who lives with an incurable disease. We all deserve the same amount and kind of compassion, resources, treatment and support. And especially funding. Because with funding comes better treatments and a cure, someday.
That’s what I want. A cure.
Then, only then, will I want the balloons. And a cupcake.
For more information about Ankylosing Spondylitis and related diseases, visit the Spondylitis Association of America at www.Spondylitis.org.