Each individual affected by spondylitis has their own unique story. We at SAA believe that each and every story can be a source of inspiration and empowerment. We’d love your story as well! Send it to us at firstname.lastname@example.org
By Sara Shaw
Monday, October 23, 2017
The slums of Kolkata birthed me. She left me in a clinic abandoned and alone. That is how my life began. Weighing less than two pounds and barely clinging to life, I was picked up by the staff of the International Mission of Hope Orphanage during one of their trips to the city’s birthing clinics. The orphanage’s nurses would go from clinic to clinic with large woven baskets to collect the babies and transport them back to the orphanage. My veins were so small from being premature that my head still bears the scar - a patch of skin as tough as an orange peel, and the size of a dime - where an IV was inserted to keep me alive. Most of the babies in my condition didn’t make it, and I had almost succumbed to death multiple times in the first few weeks I was alive. Eight weeks after I was born, a few of the nurses from the orphanage boarded a flight, with myself and a few other babies and we were transported from India to Seattle, WA, where my family met me for the first time. Surviving the first few weeks of life made me a miracle baby. I suppose that makes me a fighter, which is why Ankylosing Spondylitis will never define me. My life has been plagued by battles, yet I have always persevered in the end, no matter how long or difficult the fight.
I grew up in Washington State between Seattle and Spokane in your typical middle class American family with two loving parents and three siblings. I was the only adopted one - having two boys, they wanted a girl and knew that in India, girls were often unwanted. I was a daddy’s girl, like most little girls are. I have fond memories of summers at camp, running around in the sprinklers outside during hot summer days, and being involved in drama club, band, and jazz choir.
My childhood holds fond memories. It was a time with no worries or pain. I attended Visible Music College after high school, where I studied vocal performance and music business. It was during my time there that I met my husband through a mutual friend. We married about six months after meeting, which I realize is slightly crazy, but it worked for us. I was soon pregnant with our first child - a daughter. Newly wed and receiving orders, he was going on a trip to Iraq, compliments of the US Army. Deployments are never fun, but they are even worse for newlyweds.
Three weeks after our daughter was born, he left to serve our country, and fight the “bad guys” in a war that had the potential to take him from me permanently. Real war is very different from what you see in movies or read in books. Real war sucks big time, and he never returned to me the same. War broke him, and by default, it broke me too.
Eleven years later we are still enduring the consequences of that war - a man who never made it home. The guy who came back experienced brain damage, a severe frontal lobe brain injury, that changed his entire being; changed his personality forever. “Mrs. Shaw, don’t be surprised when your world falls apart and your marriage can’t survive. He literally is nothing like the guy you married.” I will never forget the words echoing from the mouth of that sweet woman, a Neuropsychiatrist at Brooke Army Medical Center. Her words crushed my soul, yet they turned out to be so true despite years of trying to fix it all.
Everything was about being a caregiver in those years, and helping other wounded warriors and caregivers in the post 9/11 Military world. Advocacy suited me well, but secretly I was dying inside. It’s something that was neither his fault nor mine, it just was. I knew my marriage was dying, and there was nothing that could be done to repair him. He wanted me to change, to match his new personality, but that isn’t how this works. I couldn’t become a new person; I have always been who I am. We didn’t want to ruin our kids, and we did care deeply about each other, but eventually we realized that sometimes tragedies happen in life, and no one is to blame. I will always respect the hero that he is, and appreciate the great father he is to our kids, and I still help take care of him, despite my own pain.
Working with disabled Veterans’ for the last eleven years has taught me so much about the medical community. My work with caregivers translates well to what those of us with ankylosing spondylitis face on both sides. Speaking of AS….
“Life as I knew it would never be the same.” Damn, that sounds dramatic, yet it was all I could think of when I was diagnosed. I felt frozen in time. “Anky Spondy whaa?” I couldn’t say ankylosing spondylitis, let alone grasp the gravity of what it was. I knew that the years of soul-crushing pain finally had a name, but what did it really mean? Would I still be able to enjoy life? What would I have to give up? I was overwhelmed, and remained that way for months after my diagnosis.
You see, I had suffered mysterious pain for fifteen years. Not that I was counting, I really wasn’t, I just knew it had been so many exhausting years of pain - enough to feel crazy at times. I remember my pain starting in my early high school years. PE was tough, and though I didn’t like running, there shouldn’t have been any reason why it hurt as bad as it did. The same was true of my dance team. Though I loved it, I had to give it up due to the pain, which I didn’t vocalize back then. When I finally did, doctors made me feel as though my pain was all in my head because they were unable to find a cause. If I just exercised more, or lost the weight, I would be fine. I had never struggled with my weight until after I had kids, and the mysterious pain increased.
The physiatrist before my rheumatologist was convinced that I was just overweight and consequently suffering from mechanical pain. Still, to cover his own booty, he did blood work and that was my saving grace. It isn’t abnormal for those with spondylitis to have normal blood work results so I guess I was “lucky” that my inflammatory markers were sky high. I could no longer be ignored, but at the same time I didn’t want to have a disease that would be a life-long battle. My physiatrist gave me a half-assed apology, and sent me to the wonderful rheumatologist who I am still with today. It’s been a tumultuous journey, but I am stronger for having gone through it all.
I didn’t know anyone with spondylitis, so I turned to online support groups, and eventually found the Spondylitis Association of America. While on a Facebook page for women with AS, I came across someone who wasn’t too far away and we decided to meet up. I had been recovering from neck surgery after a texting and driving teen hit me, and I needed the pick-me-up a friendly face could offer. I had no clue that I would meet someone so awesome that day, a soul sister who would be a life-long friend. Sarah and I (yes, we have the same name) became fast friends realizing we had a ton in common. On her way to meet me at a local bakery, Sarah was on the phone with her mom. Sarah’s mom was concerned that I might have been some crazy serial killer with an ax. We had a good laugh over that story, and when I told Sarah that I was fresh out of axes so she would be fine, she knew we would get along well.
Sarah and I have become close these last few years. We can share things in our lives that others will never understand, being bonded by something neither of us want, but that makes us appreciate life. Sarah is also adopted, and a musical genius. Her singing is featured in Tidy Cats commercials. I have never met someone with such a love for the bass clarinet, and mint chocolate chip ice cream. Being that we are ambiverts (an equal balance of extroverted and introverted traits), we are two peas in a pod. I have met other people with spondylitis who I adore, but no one that gets me quite like she does.
We all need a Sarah in our lives - someone who loves unconditionally, and someone you can laugh with. I encourage everyone to reach out to your local SAA group for support, or connect with others through social media. It is easier to isolate and feel like you are alone, but strength comes in numbers. Sarah has made my journey easier. I always have a sympathetic ear and someone who can understand all my aches and pains, but also someone who I can hang out with, who needs no explanations if I get tired or start to hurt. I don’t feel like I am slowing Sarah down during those times. We all need someone who can be that friend who just gets us without extra questions. Sarah came into my life when I needed her most.
About a year ago, Sarah and I both tore our wrists in the same spot, on opposite hands, and have since both undergone an initial surgery and then a revision. Life in general, but especially life with AS, is not meant to be endured alone. You run the risk of burning out if you don’t find someone who can relate to you. Those of us with AS must often live a more regulated life, and at times, that can be depressing. It is so much easier with a buddy to walk this life with. I have met a handful of my fellow AS peers, and my life truly is richer for it. Together we are warriors, and our strong community helps us advocate for ourselves and for further awareness.
Should you start to feel down, remember that you are not alone. I never in my wildest dreams thought I would find myself chronically ill, but if I must be stuck in a club I don’t want to be in, I am happy that I have made friends to walk alongside me. So, here’s to you, my friend. Live your life, make memories, take nothing for granted, and leave a legacy.
Editor’s Note: You will find local and online support resources, stories from others living with spondylitis, and more ways to connect with others living with spondylitis on SAA’s website, at spondylitis.org/community.
Other posts by Sara Shaw
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