Authentic me

My life story of challenging my inner strength with a somewhat invisible disability…

It was Grade 5, the last year of my life as I had known it. Something had drastically changed, switched on or off depending on how you see it. Chronic illness has arrived. Darkness and BLACK. They say that black is the absence of colour, I believe it, my colour was gone. Even my facial colour, drained and strained, looking so pale with the only colour in my withered and tired body were my legs and feet turning PURPLE upon standing too long. My heart racing upon movement and position and almost passing out, nauseated, vomiting, unable to eat, so bad they considered tube feeding, migraines, eating handfuls of salt, so many different types of medications, natural, traditional, tilt table tests, stamina testing the list is never ending. So many suggestions and opinions from perplexed and well educated pprofessionals. Family stands by, friends come and most go, not realizing what has happened to this human that was full of life, laughter, school. I remember crying just saying all I want to do is just go to school and be a “normal“ teenager. After years of “what is this” that has made me into someone that cannot function with SO MANY SYMPTOMS that NO ONE can figure out, who is this person? I dig deep searching for the strength to move on in my life of unknown future. I see 100’s of doctors, specialists, professionals and years pass by. Grade 11 sucked but I did it, alone in my bedroom, learning when “stable”. Graduation, I did that too achieving Honor roll grades eight thru 12. My mom always says “thank goodness you are smart like me”, we laugh. Yes, I laugh again. I laugh a lot with my family. You either laugh or you cry, we do a lot of both. So, we stumble upon a hero, one of many that have passed through my life. This hero, a Neuralogist who specializes in neuro muscular illness and autonaumic disorders, says that he can’t cure me but he can help me. Six years later, here I am. I can get out of bed most days. I am GRATEFUL for so much and heavily rely on the kindness and generosity of strangers! 100’s of humans have donated their time, their blood, I get the albumin portion for my infusions. I am now designated with a permanent disability, even this has taken years and so much energy! My life journey has taken me places I never thought I could or would go. My “invisible” disability, with many still struggling to accept that I have “something” wrong with me, I never want sympathy or to dwell on illness but this is a tough gig but I press on. The sun is now shining a little brighter, peaking thru the blinds casting kaleidoscope like colour on the wall. Intriguing, this COLOUR reappearing in my life. I spend hours per week in hospital and at home attached to a pump thru my chest port. This has become my life as I now know it. I celebrate infusion milestones with vibrantly coloured cupcakes and sprinkles, sadly spending more time with my nurses than I do with my family. Celebratory RED cherry on the top, I completed my Bachelor of Education Degree with distinction. I am currently continuing my education journey with taking Inclusive Education. Yes, I want to work with students with varying needs! I want to help others. I yearn to help others. I am inspired to help others. This girl who couldn’t get out of bed. I fought like heck to get out of bed. I learned and grew while in bed. But I was not giving up. POTS. That’s it. Google it. Life changing, life sucking, POTS. It defines me, educates me and educates others. Will there be a "magic" pill someday, we don't know, but until then, this is my journey. I love me. I love life. My chronic, rainbow array of new COLOUR, crazy to some, life...as I know it.