I have ankylosing spondylitis.
On January 18th, 2013, I was diagnosed with ankylosing spondylitis, a condition characterized by chronic and degenerative inflammation of the spine.
When I was 11 years old, I had surgery to repair an inguinal hernia. It was a pretty simple and non-invasive procedure, but what was significant for me about this moment was that it made me realize that there could be times when your body simply doesn’t function as it should. I find it strange that this vessel that we carry around (our body) is so crucial to our existence. Even the smallest of physical blemishes can impact your day-to-day life.
To reiterate the first statement I made, I have ankylosing spondylitis. I would like to share my story with the disease, how it made me feel, and what I learned (and am still learning) from the experience. It would be fine if you didn’t read this, found it silly, or disagreed with something I wrote. I can’t promise that this is even worth your time to read, but what I do know is that every thought and feeling that I describe here is real… for me at least. Truthfully, I am writing this mostly for myself because I can be forgetful sometimes, and I don’t want to forget how I feel at this exact moment. I also find writing to be therapeutic. So, here we go.
When I was around 18 or 19, I started having back pain. It wasn’t terrible, but painful enough for me to go see a doctor. They said it was probably just a minor strain. I didn’t question the diagnosis, as there were a dozen things in my life that could have contributed to it. Millions of Americans suffer from back pain at any given time and I thought I was just another drop in the bucket. I didn’t think much of it over the next few years. There were times when the pain was much worse though. I remember two distinct moments that were especially bothersome. I was trying to get into my car one morning and I was physically unable to bend my body in a manner that would allow me to get through the door and onto the seat. I spent about half an hour trying to contort myself into the right position. Needless to say, I was late for school that day. The second incident was when I was laying in bed on my stomach. I wanted to roll over onto my back, but the pain was so excruciating that I just couldn’t get myself to do it. It was a really weird moment for me. When I was 22, the pain started spreading to my hips. This really scared me because I couldn’t run at full speed for more than a few meters before having to stop because of the pain. I thought that if there was ever a situation where I literally needed to run for my life, like if I were being chased by a polar bear or a lion (both plausible scenarios), that I would surely die.
I should have gone to see a specialist and get more rigorous tests done, but the reality of my life at the time, like a majority of college students, is that I was greatly underinsured. I didn’t want to burden my parents with the cost, and since I wasn’t dead yet, I figured I would just wait until I got a real job to pay for everything myself.
When I finally graduated and became a pharmacist, one of the first things that I did was I sought medical treatment. I saw a wide range of healthcare professionals, ranging from naturopaths to orthopedic surgeons. I attended physical therapy three times a week for 3 months… no improvement. I had a dozen x-rays taken and had two MRIs…nothing conclusive. When I had my second MRI, they injected radiocontrast dye into my hip. The technicians that were prepping me for this mini procedure were about my age and when I had to get undressed, I remember feeling mad because in my mind they did not deserve to see me naked. I realize that this is weird to think about and has very little to do with the story, but that is the way my brain works and this is how I like to write.
In late 2012, I started experiencing a much different pain… one far worse than any I had felt up to this point. I was really scared. I knew that something was amiss and I needed to finally find out what it was. I went to see Paul, who is now my primary care provider, and I asked him to draw every lab panel we could think of. I especially wanted to obtain an inflammatory marker panel, which I had never had before. A week later on my drive to work, Paul’s medical assistant called me and said that I was being referred to a rheumatologist. My labs had come back normal, with the exception that I was positive for the genetic marker HLA-B27. I didn’t know what that meant. When I got home from work that night, I researched what that was and learned that the gene was strongly linked to ankylosing spondylitis. The funny thing is, when I was in school and I learned about the disease, I distinctly remember thinking, “that would suck, I wouldn’t want to have that”. This was more or less the extent of my knowledge with regards to ankylosing spondylitis. When I started reading more about the disease, a very strange set of emotions came over me. The more I read, the more I felt that this condition completely explained the last 7 years of my life. I cried in my room the whole night, and to this day I am not sure what I cried about… whether it was sadness from potentially having a debilitating disease, or because of a sense of relief that I might actually have an answer to the problems that plagued me throughout my youth. My guess is that it was probably a bit of both.
I had to wait two weeks to see the rheumatologist, and during that time, my entire life and my every thought was consumed with those eight nonsensical syllables: ankylosing spondylitis. The wait was torture. I told very few people about it. None of my family members knew. At first, I agonized over whether I had the disease or not. Then, I decided that I would use the remainder of that two weeks to prepare myself for the worse so that I wouldn’t be so shocked when I inevitably heard the news.
On January 18th, 2013, I woke up from the least restful sleep you could imagine. I had never been more nervous in my whole life. I took the whole day off work so that I could take my time in the morning and go about my normal routine before seeing the doctor. But nothing was routine about this day. I could feel my heart beat as I stared at myself in the mirror and brushed my teeth with the most somber of brush strokes. I sat in my car for 20 minutes before starting the engine. I wish I could remember what I was thinking about, but like I said before, my memory sucks sometimes.
I walked into the rheumatologist’s office. Her is name is Dr. Karl. After signing in and taking a seat in the waiting room, I looked around me at the other people waiting to be called in. I am certain that I was the only person there under the age of 65. This is not an exaggeration. I couldn’t help but feel that I did not belong there.
A nurse named Allison finally called me up. She took my blood pressure, checked my weight… all the routine things you would expect from any doctor’s visit. Then I sat in a room for 40 minutes as I waited for Dr. Karl. Obviously. It’s almost as if they do this to torture you. They want you to look at all the stupid posters that have diagrams of bones and admire the mundane, cookie-cutter art that I am positive all doctor’s offices order from the same place. A British person would use the word ‘rubbish’ to describe what was happening.
There was a knock at the door. In walked in Dr. Karl, who looked exactly like Professor Trelawney from the Harry Potter movies. The rest is kind of a blur. You see… my uncle had just passed away and I was supposed to board a flight to Canada in the next 2 hours. I was afraid that I would miss my flight, so I was hardly paying attention to what Professor Trelawney was saying. The words “spinal fusion” was something I remember distinctly. I actually recorded the entire conversation on my phone, but to this day I cannot bring myself to listen to it. Long story short, it turns out that I do in fact have ankylosing spondylitis. Then I drove to Phoenix and boarded a flight to what would turn out to be the most emotionally confusing 48 hours of my life.
Here’s the short version of that weekend. As could be expected, my uncle’s funeral was pretty sad. At the same time, I felt like I had this secret that I couldn’t share with anyone. My entire family was there, but it wasn’t the right time to bring it up. I put on a facade of normalcy… or as normal as I could fake it. It was only on the flight home that I finally felt the gravity of the situation. Despite my previous attempt to prepare myself for hearing the news, as I sat next to my mom on the plane, it all hit me like a ton of poop-covered bricks.
You know, it’s a very odd feeling to be told that there is a possibility that your entire spine could fuse together someday. I can hear those words resonate so clearly in my head even now. At the time, I felt like this would be my inevitable fate. I felt helpless… hopeless. Those that know me even a little bit know that I devote a significant portion of my life to my health and wellbeing… so this whole situation just felt like a huge slap in the face.
I spent the next few days in a zombie-like state; I would wake up, go to work, come home and just lock myself in my room. There is a walk-in closet in my house where if the conditions are just right, you will be immersed in complete darkness and no sound can be heard. Sometimes I would sit or lay down in there for hours because I would just lose track of time. I think I needed a place to be alone with my thoughts.
Over the following weeks and months, I paid close attention to my interactions with the people around me. When I spoke to my family, my friends and to new people, I used this as an opportunity to ascertain or reassess people’s personalities. It’s funny to listen to people talk when you know that hardly anything they say has any bearing on what’s important in life. Indeed, sometimes talking about nothing is what I enjoyed the most. When I told people about this story, most people were kind and supportive. Sometimes people were jerks and made me feel even more alone than I already did. When I met new people, I kept my story hidden because I wanted to see if I could still act normally, and also I didn’t want anyone to feel sorry for me. My favorite type of response was when people made it seem like I was dying. Just FYI, I am not dying.
I found out that there is a support group for people with ankylosing spondylitis in Tucson. I thought about going, but I was apprehensive because I honestly just did not want to see people that might have physical deformities. I think that would only have made me feel more depressed. What I’ve come to realize, though, is that you are my support group, whether you know it or not. I feel fortunate to know everyone that I do. Even the smallest of interactions, even if we don’t talk anymore, even if I don’t like you that much… I think there is something to be learned from everyone. For better or worse, I needed you to get where I am today. I wish I could tell you how much each of you mean to me, but it would take too long and I fear I am not as eloquent with words as I was at one point in my life.
I’ve learned quite a few things on my own, most of which come from thoughts and feelings that I have internalized over the last few months. Firstly, what I’ve learned is that life is so much more difficult and far more complex than I had ever imagined. For most of my existence, my life was on a set course with a clear path and predefined objectives. Now, there is nothing ahead of me but open spaces. I still have many goals that I would like to accomplish, but I’ve learned to accept living within the confines of the delicate balance that exists between fate and circumstance. There are still times when it can be difficult both physically and emotionally; there are still times when I feel tremendously isolated, but I now fully accept ankylosing spondylitis as part of my life. In fact, I’ve learned to embrace it. It makes me feel like I have something to lose… like the ground beneath my feet may not be as permanent as I always thought. I am not big on quotes, but here is a short one that makes a lot of sense to me…
“There is no education like adversity” – Benjamin Disraeli
Sometimes I think you need adversity in your life to remind you that you are still alive… that there is so much you have yet to experience. Granted, if given the choice, I would not have chosen a chronic medical condition to teach me this lesson, I can easily think of a hundred worse scenarios. I now try to live my life by a few, simple, guiding principles: to be kind, to live purposefully, to better myself, to respect the life I’ve been given, and to cherish the lessons that brought me to where I am today.
I wish I could think of something meaningful to conclude this story with, but I just can’t right now. Maybe it’s because this is an ongoing journey that doesn’t really have a clear-cut ending. Yes, that is what I will going with. My parting words come from one of the greatest cinematic masterpieces of the early 90s, Cool Runnings:
Peace be the journey.
Arizona, United States of America