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Each individual affected by Ankylosing Spondylitis has their own unique story. We at SAA believe that each and every story can be a source of inspiration for anybody in a similar situation. We’d love your story as well! Send it to us at elin@spondylitis.org

Never Give In

By Tariq Gangari

Never Give In

I can't remember the exact date, but I remember the night well. It was the crack of dawn when I woke up and looked down to see my right leg hanging off the bed like I was fixing to get up and sleep walk. "Ha-ha that must have been a weird dream." I say to myself before reaching for my watch on the side table. I was well into my growth spurt by this time, growing upward but not so much sideways just yet.

After having a mammoth stretch I go to turn over in bed, or at least I tried to. My right leg is numb; it's just gone, completely empty of all sensation. "Ok, alright it's just a bad case of pins and needles; I'll wait a few minutes.” But the minutes turned into hours. It was around day break now and I should have been tired after playing on my super cool Nintendo all night but a concoction of fear and anxiety had me awake like I had just taken a handful of speed.

As I tried again I got an incredible shooting pain in my hip and buttock area, like my pelvis had just been shattered. What the hell was wrong with me? I was 14, relatively fit and very lean, I cycled every morning for a mile or two completing my paper route, I shouldn't be feeling like this. As the hands on the clock began to accelerate, anxiety was soon replaced with tears of shock. The pain in my hip was so awesome that I couldn't even lift my leg with my hand, any movement whatsoever felt like bone on bone friction.

For years I would be suffering from excruciating pain every minute of every day. What did the doctors say? "Growing pains." Growing pains? Even at the 'ripe old age' of 14 I knew the term was nothing more than a myth. I don't know how many x-rays, MRI's, and blood tests I underwent as a kid but every test I went through came back inconclusive.

Whatever it was, it was making the 'best years of my life' quite simply put, hell. It would take me 10 minutes to put my socks on in the morning and when it came to getting the bus to college every morning running after it was out of the question, I could barely walk. I spent the following years trying to walk like a normal kid, I tried my best not to attract any attention; it was just as much embarrassing as it was painful.

Being an active teenager it was tough to suddenly have this barrier put before me, this 'do not cross' tape stretched across my path. I could deal with the physical restraint, having to wake up that bit earlier just to be able to put my socks on - I could deal with that, but the psychological effects were devastating. To be a teenage kid and to know you couldn't do something even if you tried was torture. To not be able to do something at 16 because your body won't let you is rough as hell. Being a big sports fan it was tough watching someone make that 40 yard diving catch, or steal that base or make that sudden burst of pace over 20 yards and know I couldn't do that because my body wouldn't allow it anymore. It certainly put everything into perspective.

As the years rolled by I was popping painkillers like they were gummy bear vitamins from Costco. My confidence was shattered, motivation void, desire vetoed. I'd spend most of my University days stuck in my dorm with a hot water bottle shoved down my shorts and my grilled cheese sandwich maker as my only real companion. The worst thing about the whole deal was not knowing what this thing was; it felt like a live entity living within me gnawing away at my health, my youth.

I knew that whatever it was, I was going to have to fight it, a one on one fight with myself. I don't know where the sudden boom of desire came from but I started up at a local gym and joined an out of county baseball team. I figured if I couldn't get through the barrier I'd have to jump it and see if I could cope on the other side. With four weeks of intense training I felt like I was winning. I'd go to the gym every other day and head to the diamond every Sunday for training from 9am to 3pm. Knowing that I could keep up with the pace of the squad, albeit while training through the pain barrier, took the monkey off my back and gave me a sense of hope. I felt like I was lifting the tape and testing the waters on the other side. It showed me that my physical capabilities weren't lost, but that they were just buried under a few layers of pain.

A defining moment came at base stealing practice, a timed sprint from 2nd to 3rd base with the whole squad watching on. As I stood there on 2nd base stretching my now tight gluteal muscle after a 45 minute cardio session, I thought to myself - "Give in now and I might as well give in every day for the rest of my life." As the coach blew the whistle I was off; within an instant pain made its very severe presence with every stride. I was solely focused on that squared target just about visible from the layer of sand. As I reached the base I was met with the coach's whistle and the systematic applause from the squad. It's interesting looking at a sportsman not knowing their story leading up to them making a defining play in a game.

To me, that was the day I got my life back, my control. That idle Sunday afternoon - it was symbolic of how my life would be from then on. As soon as the whistle blew I felt pain coursing down my back, buttocks and legs, yet once my eyes met that 3rd base - my goal, I knew I wasn't going to give in to it. Soon after I got home that evening I laid in the bath with a massive smile on my face, although I still didn't know what I was working with, I knew that I could be stronger than it, go toe to toe. That Sunday was the last session I attended at the diamond. There were a lot of guys there chasing baseball careers and I didn't want to step on anyone's toes or be a shadow in anybody's ray of light. As far as I was concerned I was there to prove a point to myself and I had achieved that. I sent the coach a thank you email and decided to use that day as my day to push on.

It was worrying to feel how tolerant my body was becoming to the drugs I was taking so I decided that I really needed to seek the truth, to know what I was working with. I was 22 now and had gone to the hospital to discuss the results of a recent X-ray. I was fixing to hear the usual BS when the doctor came out with what sounded like Mandarin at the time. "You have Ankylosing Spondylitis, arthritis in short."

I sat there in silence, the doctor looked at me, I looked at him and the watching nurses all smiled clutching their notepads as I just nodded with emptiness pretending I knew what the hell he was talking about. The room was silent for what seemed like minutes, what woke me up from my daze was the realization that my x-ray hanging up on the light box left my wang in full view of everybody. I didn't know how to feel, it was a catch 22 deal, on the one hand it ended 8 years of searching for answers but on the other hand I was stuck with this disease which would live inside me for the rest of my years and I had only just started populating my 20's. There it was in black and white, on the screen - my x-ray results showing not only inflammation but more significantly complete fusion of the sacroiliac joints in my hip; this was real.

Why it took 8 years to diagnose I don't know, but for 8 years I was fed bogus information from, it's just a phase, growing pains, to it's just a slipped disk. After the nth scan the doctor came out with the truth: you have chronic arthritis of the hip. Bang just like that. I guess it's like when people say never meet your heroes, there's all this build up to it and once it passes you feel...empty.

Since the day I got the news my life has changed completely. I'm now in the best shape of my life weighing in at 210 lbs. at 6 feet 3. Thankfully I am now only dealing with one doctor who is a specialist in my case so I'm able to get consistent advice on certain aspects of my lifestyle. He told me that my condition will worsen if I don't keep active so I guess I'm tied down to a life of consistent exercise. Hell, I can think of a few worse things to be tied down to. I go to the gym now with no barriers just a different focus, fresh motivation and a new foundation to work on.

So that's what I'm working with. I'm a 25 year old guy with Ankylosing Spondylitis and an ever growing appreciation for my health. I am truly grateful to be given my life back because a lot of guys who come back from duty aren't given that chance. My health has come to the forefront of my everyday living albeit through unwanted circumstances, but in a weird way I couldn't be happier.

I have AS but I feel that as long as I remain in the best possible shape AS will never have me.

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Tariq Gangari

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