My story begins on Monday 18th May 1987 in London England in a small town called Harrow. Born as Tariq Gangari (Ty) I grew up technically gifted at most sports… I was tall, skinny and agile. Football was my sport and for many years I held the mantle for being the quickest kid in school, I guess it was my scrawny frame that made me that little bit more aerodynamic and lighter on my feet.
As the years rolled on something began to slow me down in everything I did. Gold in track deteriorated to bronze and after playing as the lone striker in football for most of my junior years I found myself populating the less mobile defensive midfield responsibility nearer the last few years of high school.
I didn’t know it at the time but it turned out I had Ankylosing Spondylitis [AS.] AS is a form of arthritis, it is an incurable inflammation of the spine and in some cases can cause part or total fusion of the vertebrae and other joints around the body. It can also affect organs such as your lungs, eyes and in my case the heart. My heart skips a few beats at least once a day which can be a little scary to say the least.
Unlike many other arthritic conditions it is imperative with AS that you keep active, stay fit and make sure you follow a healthy lifestyle. The symptoms of the condition worsen with inactivity so if you have AS you’re more than likely going to be in debt to a life of continuous exercise. I wish I knew all this in 2000…
I have been suffering with the symptoms of AS since 2000 but due to a universal lack of knowledge and a definitive diagnosis formula I wasn’t actually diagnosed until 2009. Diagnosis of AS can take 8 sometimes 10 years on average and it is a disease often overlooked due to the age of the patient involved which most commonly are young men aged in their teens.
I remember the day I knew something wasn’t right. I was 13 and I was having a sleep over at my best friend’s house. 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. I was well into my growth spurt by now and was finding it difficult to keep my growing frame on a single bed all night without rolling off.
After a big stretch I tried to lift my leg up and turn over, significant word being tried. My right leg was numb; it was just gone, completely empty of all sensation. Ok, it was just a bad case of pins and needles I told myself; I’ll wait a few minutes but the minutes turned into hours. It was around day break now and 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 groin area, like my pelvis had just been shattered and the muscles were tearing. What the hell was wrong with me? I was young, relatively fit and I cycled every morning for a mile or two with my paper route, I shouldn’t be feeling like this. It was at that time that I started to wonder “had I fallen off my bike recently?” I had no recollection of a fall or any type of impact so this was really starting to rack my brain.
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 help from my hand, any movement whatsoever felt like bone on bone friction.
For years after that I’d suffer from this excruciating pain every minute of every day. I visited more doctors than I had hot dinners only to be met with the same diagnosis: Growing pains. 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 as inconclusive. Doctors would give me a bunch of painkillers and tell me to rest and definitely not to go to the gym or run.
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 I’d have to leave earlier than the other kids because I couldn’t walk very fast. I did everything I could to just be able to walk like a normal kid. I tried my best not to attract any attention; it was just as much embarrassing for me as it was painful.
Being an active kid 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 killing me. To be a teenage kid and to know I couldn’t do something even if I tried was torture.
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 skittles and had more heat patches on my ass than underwear. My confidence was shattered, motivation void, desire vetoed. I’d spend most of my University days in my dorm with a hot water bottle shoved down my shorts watching wrestling and eating grilled cheese sandwiches. The worst thing about the whole deal was not knowing what this thing was, feeling the physical effects of something that I could not see. This thing was gnawing away at my health, my confidence, my youth.
In my university years I began to really see what this disease was doing to me. I remember standing in front of the mirror one night staring at what I had become. I was 6 feet 4 sitting on a measly 175lb frame. I had the posture of Mr Burns from the Simpsons, my confidence was shot and I was a million miles away from where I thought I’d be at the age of 18.
The dreams I had as a kid of becoming an athlete in my adult years seemed a million miles away. I could not even put one foot in front of the other without wincing in agony. For years I had been told by doctors and specialists to rest, to keep warm and stationary and all will heal itself. It was nearing 5 years now with that advice and it hadn’t gotten me anywhere; I’d just about quit. I contemplated a lot of things in that dorm that year, I felt lonely as hell.
I wanted to run away, this thing had ruined everything, my academics, my social life, my dreams and most importantly my health. How can you run away from something you cannot see? It was at that moment I figured I’d have to fight this thing; I signed up at the university gym and joined a baseball team in the next county over from my hometown.
I’d go to the gym every other day and head to the diamond every Sunday for training from 10am to 3pm. Knowing that I could hang with the regular squad and train through the pain showed me just how strong I could be, it showed me that my speed and agility weren’t lost, they were just buried under a few layers of hard work and pain. After every training session I felt spent, my body ached, my joints fried but the following day I’d feel great, I’d feel stronger.
The day I felt like I was beginning to get a grasp back on my life was just typically on any given Sunday. It was a chilly morning at the diamond and I found myself standing on 1st base after hitting a line drive past 3rd. The next guy at bat didn’t have a hope so I thought I’d better get busy making something happen.
As soon as the pitcher threw that ball I was off, shoulders tight, back hunched, stride restricted to 50% everything I shouldn’t be doing but I couldn’t help it I just did what I could. Pain was surging through my back, buttocks, groin and hips; I ran the only way I could, the only way my AS would allow.
That seemed like the longest 90ft dash of my life and I damn sure wasn’t going to slide. I got to 2nd base safely and received one hell of a pop from my teammates; I had just stolen my first base on the diamond a week before we were due to start base stealing drills so my coach got a kick out of that. The guy at bat swung and got struck out straight afterwards and we lost the game but everybody was talking about my great play at the end of the game.
To do what I did that afternoon took belief in myself, belief in my ability, something which I had lost many years before and thought I’d never get back. I couldn’t stop smiling behind the wheel of my car on the drive home that Sunday afternoon. As soon as I got home I ran myself a bath still donning a massive smile on my face and sent the coach a thank you text message. That Sunday was my last game at the diamond, there were a lot of guys chasing careers and I didn’t want to step on any of their toes. As far as I was concerned I was there to prove a point to myself and I had achieved that… I knew that I could be stronger than whatever it was I had, I knew I could go toe to toe with it.
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 specialist came out with what sounded like mandarin at the time. “You have Ankylosing Spondylitis.” I sat there in silence, the specialist looked at me, I looked at him and the watching nurses in training 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 against the light left my wang in full view of everybody in the room.
There it was, in black and white, my sacroiliac joints completely fused confirming my case of AS, 9 years late. I didn’t know how to feel, it was a catch 22 deal, on the one hand it ended 9 years of searching for answers but on the other hand I was stuck with this disease for life. 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 just feel empty.
I spent the next 3 years doing nothing but working out and stacking shelves. I was weighing in at 200lbs now and was battling my way through each flare up. Flare ups are when a part of my body usually a joint would inflame to the point where medication would not touch it. The inflammation in that part of my body would cause the muscles around it to overwork, contract and eventually spasm causing severe twinges and limping. These are often brought on/made worse by bad posture, cold temperatures or finding yourself in damp conditions.
This caused the months to seem to all blend into one another and life just seemed like an endless battle with myself.
I wouldn’t be able to face the following day without working out that day; working out seemed to release endorphins which just happened to be the best medicine for me. I’d go to the gym in the morning do my weight work, do 20 minutes of cardio, come home, shower, eat and go stack shelves in the evening. It was my life and it was all I knew.
Even though lifting weights and eating right helped keep me mobile I was never able to reach any real consistency with my training between 2009 and 2011. I’d have a couple of week of consistent exercise and before I knew it a flare up would pop up out of the blue and leave me bed-bound for a month or sometimes even two. Losing all muscle mass I worked my ass off to gain was hard-hitting but walking into the gym post flare up and failing at a weight you owned just some 8 weeks prior due to a loss of strength was a pill too tough to swallow. I was having enough of this one step forward two steps back BS.
It wasn’t until 2012 when reality gave me a huge slap and I found myself addicted to working out, it was like a drug. Even though I was hurting everyday with AS I made sure that I worked myself so hard in the gym that I gave my body a different type of pain to cancel out the pain I had no control over.
My newfound gym rat life culminated in me packing my bags, buying a one way ticket to Boston and cycling down to Miami. Yeah in case you haven’t guessed, I can be a little spontaneous! You can read more about my adventure here: http://iam1foundation.com/boston2miami/
I came home from my 3 month adventure and started working on my new site which was launched a little over a year later. I work out hard, play hard and enjoy life to the fullest. I am blessed to say that I have been (relatively) flare up free since January 2013 and believe me I don’t take that for granted for one minute!
Life is perfect even though my back aint! But while I am still able to keep active I’ll carry on smiling because life isn’t perfect but it is what you make it.
Thanks for reading,
England, United Kingdom
President of The IAMONE|FOUNDATION