2011 was the year I began distancing. By which I mean, I began a life lived from my twin bed, fueled by goldfish crackers and electrolyte drinks, seldom able to access the outside world. It wasn’t mine to call home anymore.

I was drowning in conditions that these doctors hardly knew about. I had no choice but to become my own doctor, nurse, and historian. More than anything, I became my own community.

The outside world was stolen from me by sickness, uncertainty, and administrative violence – this world was never built for my survival. Such predicaments were met with constant calls to push through – go into the world anyways, risk it all for a “normal” life. They said adapting to it would make me better. It wrecked my body and my mind. Being bedridden was extraordinarily taxing and painful in a way that cannot be understood by those who have not been fully immersed in it in this way, yet. But I am inseparable from my bedroom life, I am made of soft pillows and the world I built among them. 

Through years of alienation from everyone I love, came the knitting together of hundreds of bedrooms online, rejecting the isolation of illness and finding a home in this sick life to grow and thrive from.

I just can’t see what the abled world has to offer, that is worth throwing all caution to the wind.

June 29, 2012* 

“There is a reason why I have more respect for the chronically ill than the healthy.”

I had to miss holidays. I had to miss milestones. I had to grow up knowing this sickness was forever, the outside world was not built for my thriving, the wants – the dreams – the social scene – the contact with people I love – 

It all had to come second to chronic illness.

I lost my education. I lost friends. I gained trauma. 

9 years and counting, losing what “normal” life must be like.

2020 was the year everyone began to catch up. 

I saw how everything would crash down and grieved in the midst of much abled denial. I’d already processed what our world would soon look like, but to them, I was catastrophizing.

March 29, 2016* 

“Can we take a moment to laugh together about ER staff being confused as to why I’m wearing a mask in a hospital during a flu outbreak?”

The way the impending crisis lit up my sick kid PTSD was enough to tell me it was reality.

I knew isolation was coming, across the hall from my room that was claimed by the trauma of sick youth. I knew it would wreck me, and it did. Yet I’ve never been more grateful to take on a situation so colored by flashbacks. Reopen my old wounds, I can bandage them if it means saving lives.

Spring. My mother and I were told that living like we have and following the precautions we need, as high risk people, was like being imprisoned.

Summer. Precaution-fatigue took hold of the public and they sought normalcy as fast as they could. We have to go back to our “normal” lives some day for the sake of our relationships and wellbeing and profit, they said – something not possible for bodies like mine. 

I am surrounded by the new bedroomers who have not yet found peace in the distance.

They continue to claim we who push for restrictions don’t understand how hard it is for them.

No one understood how hard it was to live like this in the past, before the unreachable outside turned in. Our comfort in it? Survival. Solidarity. Community care. Love.

Everywhere I see people who were momentarily put in shoes like mine, only to destroy them, and run barefoot with a weapon in their breath. They will blame the shoes for the people they kill. It’s funny how mine still haven’t.

I don’t want to see the future through my past anymore, while the people lock focus on the present, and promise themselves there’s nothing worse than life like mine.

It’s astonishing how vast a world built from one bed, IV fluids, and goldfish crackers, can be.

Without a doubt, it is still beautiful and worth living.

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* asterisk denotes the italicized quote is an excerpt taken from an old blog dedicated to my chronic illness