Chapter 1
The Girl Behind The Mask.
My story is not special, it may not be seen as exciting, but it is real. It’s filled with lies, cries, pain, laughter, joy, failures, success, adventure, disappointment, dreams and not forgetting determination. I easily get lost in a crowded room, I fade. I am not the prettiest, I am not the most charismatic and I am definitely not the party animal I expect to be at my age. I have a complex story that many fear. They don’t know how to deal with me, what to say or how to even entertain me. Doctors pass me on, a simple prescription is not going to even skim the surface of my illness and well I don’t fit within the lines of the textbook they have learnt their knowledge from. They wash their hands with me, being fearful of the challenge rather than excited about gaining further knowledge. Friends don’t invite me out much, they know I can’t cope with the fun activities they engage in on a regular basis, they don’t want to be lifting wheelchairs in and out of cars and having the excess baggage that comes with having me. Socialising comes hard, more and more foods begin to react, and your mind is no longer as focused and as sharp.
I used to adore being in a room full of people. At a young age, I was awfully shy, and I would never, ever go up and talk to someone. In a sense, I still am very underconfident today but through my struggles I have been forced to have a voice, speak my mind and speak up. I learnt that it’s not just about being knowledgeable about what people expect you to talk about, you can bring so much more to the table by engaging in subjects people ‘forget’ or feel aren’t appropriate to bring up. People are so fearful of saying the wrong things these days that they skim the surface or divert the conversation on the subjects that people actually do appreciate you asking about. Their home life, health, family and so forth. Business talk is amazing, drunken talk is funny but kindness and love are what so many people lack in their lives nowadays. Just you the asking about ‘THEM’ as people means far more than endless chit-chat. Even now though as the years go on and when I just thought I had found my special talent, I fear I am now losing that. I tire in conversation quicker, not because I am bored of the conversation, but my mind becomes so foggy. I lose track of what I am saying, I forget previous conversations and I forget what questions I want to go on and ask. I hate awkward silences and I always used to be the one to fill them. Now - it’s another story. I don’t have the energy to think about moving, let alone talking. I shy away, sitting at the ends of tables or sitting in the corners so I can just watch and listen, rather than be in the thick of it and the pressure to entertain coming from all angles.
I paint on my mask to the public and although I try to be an open book, so people can relate to me. I am still very much in the bad habit of lying about my feelings. Somehow typing them rather than talking them and hearing them out loud gives me and my mind protection that maybe I am not feeling as bad as what I think do. When deep down I know that’s one of the biggest lies I sell myself.
People see me around, a little-tinted moisturiser and a glam dress sell them an image that I have cured a disease that deep down they believe is a ploy. I used to and still do to some extent get upset about people telling me I must be better because I am looking good, my outer shell is looking healthier. Of course, its lovely to hear. What kills me more is how people really don’t dig deep into deeper waters, they simply skim the surface. Making a quick judgment. I guess that why many people enjoy my conversation and my blogs because I don’t have the fear to avoid digging deeper. I see the pain in ways others can’t because I feel it too. I see masks because I paint one on every day and I see heartbreak because my heart is breaking with every hour that passes.
On the rare occasion I am out socially I feel embarrassed. Why? I am functioning perfectly normal. I have found ways to hide my pain so well that others so sucked up in the chaos of life don’t notice. I am stood in front of them, I ate food, I walked a little - what is the problem? I have only really recently been diagnosed, people forget I went almost a decade believing I was weak and crazy. I have had an extremely long amount of time to teach myself ways to handle, hide and lie about my pain and condition. I am not like your average person who gets flu and is in bed, unable to move for a week. My core temperature 33-34 degree centigrade and so under NHS guidelines of 32-35 degrees centigrade is classed as hyperthermia. I have migraines that make my eyes blurry, throbbing joints that stiffen up so much, I feel paralysed. Almost everything I eat gives me a reaction. I can’t afford to stay in bed and not move. I know my life is far from perfect and my ill health has left me giving up hobbies such as cooking, baking and travel but it’s not in my DNA to use it as an excuse to stay in bed all day despite how dreadful I may feel and be lazy. I know that is what people believe I do. The Lyme can change as much as my cells DNA as it pleases but it will never change my soul or heart. Within our battles with chronic illness, we lose our purpose and worth, pushing myself to ALWAYS get up and dressed encourages me to find meaning and purpose in every day.
I am lucky that my family run a very successful business, of which I am truly proud of them. I never wanted to be Mike Ward’s daughter, just another girl who followed the path that was paved out for her. I wanted and WANT to be successful in my own right. I thought early on that swimming would lead me to this goal. Unfortunately, that wasn’t to be the case. My health declined, and I do my bits and pieces for the business but I don’t excel in it like my brother does. My brother is greatly talented and fits in so perfectly with the people within the business as well as the business itself. He continues as does my Dad to make me proud every day. My Mum and I are very different. I have other passions and skills that fit out of the business box and well my Mum is just a creative soul with imaginative ideas that take the business to new heights and really gives it, it’s sparkle. She is the true hero, not only of us as a family but of the business and it’s success too. I, on the other hand often feel like the black sheep - a lost black sheep at that. I do as I have said adore the business and its ethos. Yet, it doesn’t allow me to chase my dreams enough, to ensure I define myself as Sophie Ward.
I want to use the only thing this disease can’t take away from me my heart and the kindness I have fed it to spread to others. I want to help and make a difference.
Our world is filled with selfish acts, terror, chaos and cruelty. We are all surrounded by it through what we watch, hear and see that we ourselves begin to pick up this negativity and instil it into our own lives. I refuse to let the world change me - I want to change the world.
