I think the greatest, most fundamental truth I learned on my journey of experiencing Chronic Fatigue Sydrome (CFS), and that which continues to be revealed to me in deeper ways as I progress, is this: I am me, no matter what, and therefore I am worthy, no matter what.
I have been blessed with the unique experience of having accumulated everything I thought I was, only to lose it all, in order to realize this one lesson of truth: who I truly am, and who I am not, and that regardless of what I may have done, or achieved or accumulated – or even lost – my worth as a human being does not change – because I am me, no matter what.
I have experienced being a straight A’s honour role student throughout grade school, and receiving multiple awards for academic excellence. I attended one of the top business schools in the country and worked at Fortune 500 companies in the banking and consumer packaged goods industries, as an intern and new grad. I have volunteered and helped children in other countries, as well as our own, to help them learn and grow, and become the leaders of a better tomorrow. I have experienced owning a company car with all expenses paid, along with other perks like iPads, laptops, business trips in fancy hotels and my name written on company credit cards. I have been acknowledged as a young future leader and attended the many conferences and networking sessions alike. I have rented an apartment downtown in my early twenties, bought a home later on and also had the privilege of living at home with my family. I have met many friends and lived the millennial life of partying every weekend and working hard all week. I have owned the Coach bag, the Michael Kors watch and the stiletto high heel pumps. Mastered the art of straightening, curling and waving my hair according to the latest fashion – along with the MAC makeup, Bobbi Brown gel eyeliner and Naked Palette eyeshadow. I have done the Blog TO lists of top places to check out in the city and travelled to over 15 countries by the time I was 22.
And all these achievements, accumulations, relationships, labels and identities I have gained, and I have lost.
I have experienced what it is like to lose my job and be unable to work another one. To lose my income and have no say. To lose my car and perks and position as an up and coming leader. To lose my apartment downtown and remain at my family’s home. To be judged, labelled, and disbelieved by others who choose not to understand my illness or who I am, including the doctors, and made out to be something I am not. To lose the meaning of my education because I could not use it. To lose the relationships centred on going out and convenience. To lose the ability to check out the latest spots or to be able to leave my house for months on end, much less go on a plane. To lose the ability to wash my own hair, much less apply the makeup and hair standards that are today’s beauty norms. To lose the ability to exercise and tone abs so I can fit into the clothes or wear the heels that are sold by the media and stores, unable to wear the latest trends because I have to lie down in bed all day for years, with my digestion symptoms preventing me from wearing anything that’s considered “in fashion” for a 26 year old woman today. To lose the ability to “plan” for my future, YOLO or set “goals” because my illness prevented me from knowing what will happen in the next hour, much less the next year, or the next five – and being judged as lacking vision, or simply being too afraid.
Even more than these losses, has been the loss of my ability to walk more than a few steps. Having people stare at me when it was a good day, and I was able to walk on the sidewalk in front of our home for a few steps, and then have to go inside and rest. Losing the ability to stay awake more than a few hours. My loss of being able to stand for much longer than a few seconds and where sitting up was so taxing on my system, I had to lie down constantly for fear my pulse would go too high, and I would experience a setback. Where I had to be pushed around in a wheel chair when others would stare at so young a person debilitated to this degree, some not believing me, and pretending I was just hitching a ride instead of walking.
I have experienced losing the ability to do the things I love most, like dance, run, bike, listen to music, or go outside in the sunshine. Lost the ability to be independent and drive myself around, or go downtown on the subway, or get on a plane to discover new things and meet up with friends, as I watched the world pass me by. I have lost all energy in my body to do any activity other than rest, and sometimes smile, including even the functioning of my treasured mind. The mind that had been praised for my entire life as being so brilliant, could not even process complex thoughts or sentences - couldn’t read or write. And the hardest, losing the ability to know if I would ever do these things again because of the uncertainty of CFS, and how uniquely it presents in each person - where some can get better after a few years, or remain in this debilitated way for decades. The few doctors with some understanding and willing to acknowledge CFS, unable to say what will happen, because it is out of their hands, with no proven treatment or cure.
Having sustained all these losses, some would say I was no longer me. That they could no longer relate to me anymore.
Some would say, I’ll check again when she’s back to normal.
But what I learned through the lifelong creation of this identity for myself and its fall, was that it was never really the truth of me.
Because you cannot lose something you are.
Whether I could walk, talk, work, run, dance, socialize, excel at school and in society – it didn’t matter – I was me. Always, no matter what circumstances I found myself in - I was me. When my body didn’t work, when my mind couldn’t function, I was still me.
That love. That kindness. That compassion. That presence – of what is unequivocally me – is there throughout it all, never being touched, never being upgraded or downgraded, never broken and never fixed. I am me. That Divine brilliance beyond the body, beyond even the mind – the awareness watching and experiencing it all. That which we all are – for simply being us.
And no activity, no title, no status, no position, no fashion trend can make me more or less than what I already am. Because I am me, and that brilliance and worth is not tied to any identity that can be created or destroyed – it is Infinite. It is Love. It is Peace. It is Acceptance. It is Joy. It is Here, and it is Now – Always. I am the awareness of all I experience – pure Divine magic, with unconditional love for myself, no matter what I do on this journey of life as I learn, grow and expand into all that I am. This is the truth that remains, when all else falls away. I am not defined by my experiences - I am the experience.
I gained and lost everything to learn this one truth – I am worthy because I am me. For no other reason than that. And this is the truth of us all, my dear friends. And the place of truth I choose to live from, for all the rest of my days.
Love always,
SDS
