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.
Celebration.
Hope.
Relief.
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.
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BeingCharis 
Chronic and incurable is hard to bear in those spaces. I had a similar experience in physical therapy shortly after being diagnosed with AS. While there was no balloon celebration at the end of a treatment it was clear, from the conversations between patients and therapy techs, that many in that open bay of the therapy area were going to be fixed. Recovery from a surgery or injury were all too common scenarios. I remember laying on my back, staring at the ceiling, while trying to make my abdominal muscles keep my spine still and thinking how embarrassingly simple these exercises are for someone who had once done so much more with ease. The therapists were wonderful. Although I no longer need their guidance I don’t feel like I graduated. Daily I must apply something I learned from them to minimize pain. Thank you for being our voice. I hope you never stop.
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Never will I ever stop, and I hope you never stop learning with the body you have today. It will always get harder, then easier, then harder again. Keep doing what keeps you here, whatever that is.
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Hi I have AS and want all to know it helps sooooo much to stop all dairy products as I have had great changes and its a proven link between long term exposure to an allergy like cows milk protein and autoimmune. It takes about three weeks to start feeling the full benefit and well worth the effort. I tried in desperation to feel better and I very much did so much that I will never eat dairy again. Just look up links between allergy and autoimmune and see. J
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Hi Joanne, I’m glad your dietary changes have helped manage your symptoms! Everyone reacts differently to every treatment, so what works for you may not work for everyone, and vice versa. Keep up the good work of trying what works for your body! 🙂
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Also, just an added FYI that Ankylosing Spondylitis isn’t proven to be an autoimmune disease. The Spondylitis Association of America has a great interview with Dr. Reveille about its classification, which is SO interesting to listen to!
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Thanks for writing this. I’m so glad I found your blog, because you’re saying everything I’m thinking. My dad was crippled from AS, and my brother died from it, so I understand your fear of the disease. Keep posting!
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Keep putting one foot in front of the other!!!
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I just stumbled upon your blog. Thank you. I often feel trapped by AS and it really sucks that there are so few treatment options. We need a cure!
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Hi Laura,
Thanks for your comment! I’m so sorry it took forever to be approved, I just saw it in my spam folder for some reason. Yikes!
Indeed we need a cure yesterday!
– C
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I was diagnosed with Crohn’s disease 31 years ago. Ihave been on Remicade, every 6 weeks since 2009. I am like you all and will be on it or something like it for the rest of my life. It’s hard to plan anything because you have to make your plans around your next infusion.
I pray for a cure for all of us. Maybe someday it will happen.
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So true, Crystal! Thanks for pointing that out.
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I just got diagnosed a few weeks ago and I think your blog says it all. You really put my and many other people’s feelings into words and it is really helpful for us to be able to read this and maybe show to our family and friends.
Excuse my words but it is a bloody shit situation that we are in and it truly breaks my heart to know that as you said “we will never graduate from treatment” and we will have to fight for the rest of our lives. People say “hope you get better soon” and I know they are only trying to be nice, but hey, its kinda of a kick in the guts. I’m wishing you a Merry Christmas and hope you can get some relief from the pain.
Your blog is the best I’ve read about AS so far and you do make a difference to me.
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Shine, I’m so sorry you were diagnosed. It’s unfair and shitty and all that you said! Thanks for your comment – believe it or not, sometimes they’re what motivate me to keep writing because they let me know I’m making a difference somehow.
Take care of you as well as you can.
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I’ve had AS for 23 years now but still not taking injections just Meloxicam every few days. It seems to help. A decent diet helps overtime, usually when you feel crap it’s all sugar and coffee!! Be good over Xmas 🎄
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How great that you have found treatments that work for you!
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Thank you, very well said, I myself am on Remicade infusion every 6weeks and am at the maximum dosage. I often wish that I didn’t wake up just from being tired of the battle to make it through the day. Like yourself not suicidal just tired and there’s a difference. Again thank you
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Thank you for sharing that piece of your journey, Brian. You’re not alone.
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thank you for sharing your experiences and helping me find the words to share with people in my own life my brain doesn’t work so well anymore and i am aware i cannot communicate effectively what i feel or want to say—- i love your writing
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Thank you, Kara, for writing this even though it is taxing for your brain to do so.
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