Started somewhere

 It all started with a phone call... I took the biggest chance of my entire life that week. I did not realize the impact this insane chance my family and I would take in 2014 would have on my life. Google search after google search, reviews and countless medical reports, my mind consumed for days on end. Overwhelmed with fear and consumed with desperation to get better...to get my life back on track. Could this one doctor really give me the answers I have been searching for, answers no one has been able to give me. I was young, I was sick and I was scared, terrified. 

It has been 10 years... January 2014 the phone rang ... toledo medical centre.... March 2014 was appointment day.

An entire year I waited for that phone to ring...to wake up normal again. I spent night after night trying to rationalize the craziest thing I had ever decided to do.  A Canadian, waiting to get an appointment with an American doctor, to drive across the country to see a well known doctor in Ohio, "THE" Dr. Blaire Grubb. It was 2014, I would fall asleep with the hope of "recovering" from this illness I was living with. I was a kid, watching all my friends live their lives while i sat on the side lines, wishing I was going to the winter formal dance at school. January is also my birthday, the first birthday that was different, the life I was used to living was slowly slipping out of my hands. Life became heavier and heavier and the only hope was this appointment across the country. 2013, The year my illness began taking over my body and left me living in skin that i did not understand, I was only 16. The walls started crumbling around me, I pushed everyone away and Doctors in my own country still did not know what illness I was battling was.

Test after test, specialist after specialist, hospital after hospital. Any sense of normal i had was gone and i was trying to navigate this big scary world of unknowns, and learning all these pains after i got poked and prodded on the regular. If it weren't for the blog i started in 2012, i would not remember a lot of what i have been through, they do not joke when they say that you block out trauma. I waited a year for the phone to ring... I read about the loneliness that i felt that year.. I was just a kid. 

Monday, March 10th, 2014, appointment day. It was a 3 hour appointment.. I will never forget it, tears were shed, answers were given and my life started at day 1 that day. The sentence that is tattooed in my mind, " you will most likely never be able to have a job the requires you to be on your feet" 10 years later and that statement still rings true and still haunts me. Looking back, it took me a couple years to completely accept my diagnoses and accept my new "normal". I remember not wanting to have to live if the everyday battle of this illness would be forever. I remember not wanting to get out of bed and when i did, it took everything in me to get up and get dressed.  3 years of searching for a diagnoses.. 

Its March 2024, its 10 years since i got told that i have genetic form of pots and as well have the neurological movement disorder, dystonia. For weeks, i had so many weird feelings come up and felt this strange weight on my mind. I do not even know where to begin. Firstly.. I honestly never imagined "celebrating" a decade of living with diagnosed chronic illnesses. Secondly, if this blog was a piece of paper it would have elegantly placed tear drops all over it. 

It is easy to focus on today, focus on the good and take the feeling like shit one day at time. However to sit and think about what it took to be here today, everything i have been through, what I continue to go through regularly, I am overwhelmed with every feeling in the book. To try and make sense of the journey i have been on the last decade and put it into words what i want to say to mark this day. My life was a field of weeds, not attractive and i didnt know what to do with this giant field of weeds, over the last 10 years, I learned how to take each weed and replace it with something beautiful then when the sun came out flowers slowly started to grow. I still have to put in extra work, and nothing comes easy but slowly over time its become a life that i am proud of, that i am grateful for and dont let me fool you, i still have so much to learn, i still have many hurdles ahead but i have the tools i need and i wear my story proudly. If i could tell my 2014 self one thing today.. I would tell her that you dont need to find the reason why, you just have trust this journey you need to walk through. It is hard to explain but somehow after 10 years, today i still feel guilty, that i havent done enough, that i could have done more or become more by now but on the same hand i still live with a ounce of disbelief that i am where i am today. My life is still impacted daily by my illnesses and my life goals are still small and i cannot seem to plan to ahead still but with time, support and new found love, I know that the future holds a lot of new adventures and i look forward to them all.

 On paper, of course my life is mostly obvious that i live with chronic illness. I have never driven, nor owned a car. I still live with my parents, and they help me weekly with essentials like getting to the store to go grocery shopping, making sure i have meal when i cannot stand long enough to cook. My family works together to get me to my treatment each week and i cannot thank or appreciate them enough for all their support these last 10 years. I have the best relationships with my family and together we have helped each other through countless tough times and scary moments. I have the greatest boyfriend, with one of the biggest hearts. who reminds me regularly that my illnesses are not a weight to bare and i would not be who he loves with out the journey i have lived. On paper, i got my high-school equivalency, and passed medical terminology with flying colors. I spent two summers in a row at a family friends farm, just me and tackled a lot of fears and anxiety's leaving my family for a couple weeks for the very first time. This past year, i have accomplished more hurdles and grown the most i have in a long time, and yet i still feel scared that i am not doing good enough or i might fail. Certainly, i am the only person putting such pressure on myself but after years passed by of surviving and not living, i feel constantly that i owe it to my younger self to be somebody that i would be proud of. Life will never be easy, its never easy for anyone but i know that i will need to be prepared for the challenges and hurdles ahead of me. Despite trying and working very hard on myself, i cannot seem to stop feeling like im in survival mode, always double checking, always looking behind and ahead. I really wish i could tell my younger self that living with chronic illness get easier, but the truth is, you get better at living with it but you never have control over how you will feel tomorrow. You never stop going to bed at night and saying a little prayer hoping that tomorrow will be good and I never stop fearing the next seizure. Living with something as powerful as seizures never gets easier. Everyday having to balance not pushing your body too hard, never gets any less tiring. One thing i am happy to say has changed since 2014, I stopped packing extra clothes with me every time i go out just incase i ended up in the hospital, that change was a big change but one that marked a milestone. I had my 27th birthday this January, now that i am into adulthood i look back on the journey to get here quite often, the lessons I have learned and the wisdom i take with me along the way. I learned to wear my story with pride and embrace the scars from the last 10 years. We all have a story, we all have struggles and challenges and i beleive it is what makes us human and what brings us humans togethers. 

cheers to a decade lived and cheers to the decade ahead.