My Blog Turns One: A Year of Refection

A year ago today I decided to create a blog detailing my life and struggle with the chronic illnesses and disabilities that will most likely take my life. Back then I never in my wildest dreams could have imagined that my words would not only reach over 9,500 people from more than 40 different countries across the world, but also help to make connections that I am certain will last a lifetime. And all this while advocating for change and awareness. Sharing my truth in such a vulnerable, uncensored and public way has allowed me to transform into the confident, strong being I now know that I was meant to be.

I can’t tell you the amount of negative feedback I have received:
“You should get a life.”
“Don’t you have anything better to do?”
“You’re just one person. How could you possibly make a difference?”
“But you don’t look sick.”
It goes on and on as I’m sure it will continue to, on and on.

But what these individuals fail to see is that I am making a difference with every unfiltered story I bust out in some random coffee shop. The reality of existing in the way that I, and so many others, do is far from pretty. In fact, it’s many people’s worst nightmare; a life ruined by illness. They look on with pity and a strange sadness deep within their eyes that I do not quite understand yet. But I have never viewed this huge life alteration in the way that so many others seem to perceive it. That’s not to say it doesn’t absolutely and utterly suck sometimes or that I do not struggle because I do, incredibly. I have learned that it’s okay to be sad sometimes, to be devastated sometimes, to be so incredibly angry sometimes… as long as, at the end of the day, I keep going. It is because of this that I consider myself not simply to just be surviving, but to be thriving. 

I do not share my story with an unequivocal transparency to gain the pity of my readers, but rather quite the opposite. I share the reality of my situation in the hopes that my words will resonate with others who are similarly struggling both with the illnesses that wreak havoc on their poor and undeserving bodies as well as the disturbing stigma that envelops the chronic, terminal and mental illnesses oppressing each and every one of us. Perhaps that is why we are the ones’ who have been destined to battle these often invisible diseases; our own cells launching calculated attacks on the very body that they are created from. Perhaps we are the strong ones. Perhaps, just perhaps, WE are the ones who were made to stand up and fight for the right to be accepted, to be loved, to be noticed, to be cared for. We are it and we so much more than what the outside eye can see.

So, thank you. Thank you to everyone who has helped grow my once tiny idea, into a platform that has reached to promote hope, change and the will to fight for one another. I could not do it without you all. There are no words to describe the sheer amount of gratitude and love that has filled my heart.

Thoughts, October 24th

It’s past 6 am now and I still haven’t gone to sleep even though I doubled my dose of sedatives earlier. The wind has picked up outside so there is a somewhat consistent crossover between the lull of an early fall morning and the individual gusts that sound sort of like waves if you imagine yourself on the seaside. There are other noises too. The growl of my now empty stomach after a night of being sick, my heart beating a little too fast for comfort and the creaking of the house as it adjusts to the cold. 

Tonight. Today? This morning, existing in the way that I do now feels heavy and impossible. There’s been a death amongst my online community of illness fighters; another life taken far too soon. I find my mind wandering towards where I am headed, but I have to stop myself. On Thursday my doctors looked at me with the saddest of eyes. “Things are progressing much more quickly than we had thought,” was what they said before they went on to teach me how to use catheters on my own. They went on to explain that the repetitive infections I’ve been dealing with have been due to my failing muscles, just a small part of the neuromuscular failure that my body is becoming. Through all of this I felt level headed. After all, this was just another step. A nurse came in with a tote filled with samples and stumbled over her words as she attempted an apology. Such a shame that you have to do this at such a young age. I had never felt ashamed of my body’s self destruction until then. I kept it quiet for days before telling anyone. 

The thing is, everything about my life that once felt certain no longer does. The path, the people, the existence. My illness mocks me like a bad fucking friend. It robs me of my dignity, my hair, my dreams, my choices. I no longer have control over even the simplest of things. I will most likely be late or even unable to even make it to that birthday party I RSVPed to. I have become the flakiest friend you know except you can’t even blame me. It’s not even my fault. Sometimes I feel guilty for this, other times I don’t. 

I am a host to a demolition derby of cells leaving behind a wake of failing organs and nerves. I have to stay positive, keep on moving forward. I cannot stop and it’s utterly exhausting. My bed has become both my favorite place to seek refuge and my least favorite place to be swallowed whole by the abyss that is living life with a giant question mark attached to it. The emotional toll, it seems, has begun to catch up to its physical counterpart. And while I thought that I understood that I truly wouldn’t get better, I am learning that I have absolutely no clue.