JAS’ STORY

JAS O’NEILL-STONE

Lots of brave people share their inspirational stories of how they cope with, and overcome their chronic illnesses. I am still learning to live with my illnesses. I am still trying to find my way, and still trying to work out what I should be doing and where I should be.

I am not where I wanted to be in life, that fact is plain and simple. My life plans were entirely different prior to finding out I had multiple, life long illnesses, and I had never envisaged the path I am currently on. I would never have envisaged my life would change so quickly or so much, why would I? After all, I was 17 before things started getting weird and my body started rebelling against life in more severe ways. I’d always been an accident prone kid, with a long list of odd injuries and odd symptoms, some requiring surgery, but it never occurred to any of us that there was anything else behind it other than a clumsy, kind of unlucky kid. So we sailed on blissfully, almost entirely unawares that life was soon to throw me the biggest curve ball it could; multiple life long illnesses.

As my physical illnesses started to become apparent, and take more control, my plans slowly started disappearing, until the only glimmer of what I had once foreseen in my future was the yearning for that planned out life that still burns deep within. There are days when I curse the skies and beg them for a break. There are days when the minute I wake up, I’m hit with waves of pain and exhaustion and nausea so powerful, I feel like gravity has increased 10 fold. There are days when breathing is the only thing I can do, my body won’t cooperate, pain radiates through me, and all internal organs decide that today, all hell breaks loose. Have you ever shouted at your kidneys, or stomach, or autonomic system? I sure have.

But, there are also days when I open my eyes, and the pain is less, the world is less wobbly, and I am stronger. There are days when despite the pain, I thrive, and I enjoy and I experience life. There are days when despite my illnesses, I am still me, and the world is entirely beautiful, and unique and a blessing. These are the days I look forwards too, and these are the days I hope will become more common, the stronger I become and the more control I take back from my health.

pexels-photo-884977.jpeg

I am still trying to accept that maybe where I am currently, is exactly where I need to be. I’d have never chosen to be on this path, but maybe this is where I am supposed to be. It doesn’t make the yearning for what could have been any less, though. Nor the annoyance or envy either. It’s easy to feel resentment towards yourself for the less pleasant feelings, but I’m learning to accept that it’s okay to feel like this. It’s ok that I’m annoyed that I’m not on the path I wanted to be. It’s ok to be fed up, and ok to be angry. I just have to ensure that anger, and guilt, and resentment do not consume me, because they are not me, and I am not them.

I am so very aware that you should not compare yourself to others, and that life is not a race, nor a competition, nor something that can really be planned out. I imagine we all start out with plans, and even the most steadfast of plans probably have deviations here and there. Nevertheless, it still hurts when I see my childhood friends having finished university, holding down steady jobs, settling down and having kids of their own. I was supposed to follow that path too, but life pushed me in other directions. My original  intended path is almost all but lost, I have a compass that does not work, and I do not know which direction to start walking in. Yet, I still keep walking, and I will continue to walk, or crawl, because as long as I am moving forwards, I am doing ok. Even if for brief periods of time I end up taking a few steps back, that’s ok too, so long as I get up and keep moving again. It’s ok that I don’t know where I am going. It’s ok that I am uncertain what the future holds in regards to my health. New paths are slowly being uncovered, and who knows, maybe these paths will be better than the original path I wanted to follow. Yes, it’s terribly annoying, and anxiety provoking feeling lost in this crazy world. Societal expectations dictate that I should have attended university, should have a job, should be much more independent than I am now, and it’s hard to accept I am not following society’s plan. But I know that wherever I end up, I will still have the people I love by my side, and to me, that’s all that matters. I don’t care what society thinks, or believe I should be doing, they do not know my story, they do not know how hard I have fought, and still fought.

pexels-photo-346796.jpeg

I am still learning to live with my illnesses and my body. It’s hard, I won’t lie. Sometimes it’s really hard. Sometimes I do not cope very well, and I’m not ashamed to admit that I am still learning and I am only human. There are days when I hate my illnesses, loathe my body, and hate the world. But there are also days when I thank my illnesses. For without having to battle my body, I would not be half as resilient as I am now. Maybe I am resilient in entirely different areas to what I imagined, for example stitches, staples, biopsies, digging around to find veins, catheters, scopes, and wound drains can mostly all be used without a grimacing face, because I am used to them. I’d rather have been resilient in the face of unkindness, or violence, or just general life, but hey, at least I’m resilient somewhere right?

Without my illnesses, I wouldn’t have been been to educate dozens of people on chronic conditions. I certainly wouldn’t have met a lot of the people I have met. The chronic illness community is amazing. I wouldn’t have been training my dog with the help of a charity to become my assistance dog. I would not be an equestrian with riding for the disabled. I would not have come across the Calvert Trust and it’s amazing work, who’s amazing instructor I one day aspire to be. But maybe most importantly, I would not have learnt how strong I am. I would not have learnt how fierce, and ferocious and courageous I am. Because let’s face it, it takes some strength and determination to get up and face the world when your own body is at war with its self, day in, day out. I have an entirely love hate relationship with my illnesses. But the most important thing for me, is that whether it’s a day in which I love my illnesses, or hate them- they do not win. I will fall down 8 times and stand up 9. I will laugh when my illnesses think they can beat me, because they cannot. I will shout from the rooftops that I am here, and I will succeed, and I will live.

One day, life will throw a curve ball at me again, and I will unflinchingly catch that damn ball and throw it back at life, daring it to try again.

I am the captain of my soul, I am the master of my fate. And I will win, because I am a chronic illness warrior.