I get knocked down. Then I get knocked down again.

This time last year, I had just started my final chemo treatments. I was a veteran at that point, bald and bold and handling it like a champ. 

This time last year, the worst was about to behind me.

This time last year, I knew that recovery wasn't going to be a straight line. I knew there would be ups and downs, progress and setbacks. I knew that cancer treatment had put my body through hell, a calculated war of attrition where healthy cells are inevitable collateral damage. I knew it would be hard, that I would never get back to where I was, that it would require patience, resilience and managed expectations. I knew all this, little know-it-all that I am and have always been.

This time last year, I was ignorant as fuck.

I didn't know that every time I felt stronger or healthier, something would knock me on my ass. That I would go from doing 10,000 steps one day, to barely being able to get out of bed another. That my appetite would be robust then non-existent. That I would go from desperately seeking out human interaction, to equally desperately avoiding it. 

I didn't know that I would essentially be abandoned during my recovery, left to try and cobble together a plan from a scattering of academic and privately funded programs. I didn't know how angry and resentful I would feel towards the healthcare system that subjected me to life-altering treatments and then all but washed their hands of the consequences, leaving me to beg, cry and Karen my way to get any sort of assistance during the worst physical health of my life. 

Maybe that's hyperbole. Maybe it was worse when there was actual poison running through my veins. But at least then, I knew what was making me sick. I had a medical team at my finger tips, checking in with me, advising on what's normal and adjusting medications where they could. This time last year, during my my final cycle of chemo, I actual gained weight. (This was a huge win; after my first round,  I had dropped dangerously close to "too scrawny for treatment". Nobody likes a skinny chemo patient - like I said, it's a war of attrition).

The setbacks are frustratingly predictable. Of course I'm weaker than I was before being poisoned, radiated, chopped open, vital organs removed. Of course this miracle-life saving drug has severe side effects that come and go in duration and intensity. Of course treatment has irreparably damaged my heart, my breathing, my digestion, my mobility, my cognition.  Of course this whole thing has left me with grief, trauma, stress, anxiety, depression.  Doctor after doctor glances over my increasingly thick medical history before spending most of our few minutes together explaining why they can't help me. Wow, of course you're not feeling well. Here's why that's not my problem. 

I was raised in a family, in a culture that values productivity. What have you done today? What do you do? What are your achievements? What are your skills, your strengths, your abilities? For those few weeks where I have energy, where I can eat, interact, perform a convincing facsimile of "normal", it's glorious. Floyd's back, baby, better than ever. 

But those moments don't last, and the cost is high. Time and time again over this past year, my body will suddenly, thoroughly betray me, balking at the simplest activities. Changing my clothes, drinking an entire Boost (and keeping it down), walking around the block - these are my big achievements for the day. What did you do today? Gosh, I performed some of the basic tasks of personal hygiene and care. I didn't vomit, even though I felt like it all day. I only cried twice. An hour. 

In these periods, I have the sensation of not just failure, but non-existence. Who am I if I can't do anything? It's something beyond depression, whose intricacies are as familiar to me as the lines on my own face. It's an erasure that I cannot name, an un-doing, an un-becoming. I don't know who I am. I get messages of care from people I consider loved ones, but I feel unqualified to respond, an impostor. Sorry, the Floyd you know and love isn't here right now, please leave a message and she'll get back to you as soon as she exists again. 

It's hard on the bad days to reminisce about the good ones. The worst are the days where I wonder whether the good ones are all behind me.  

It's also hard reading the endless stories of crisis in our health care and social systems, the increasing number who have slipped through the cracks, lives lost to institutions lead by those who value efficiency and cost-savings and privacy and bureaucracy over people. 

It's a scary time to be sick, people. A terrifying time to be on the margins of society. So many of us are one "getting knocked down" from not getting back up again. If you can, if you have any bandwidth, any room, to advocate for us, to speak up and take action and help out the marginalized - now is the time. You might not be able to pick me up, but you can help repair a safety net that has been systematically shredded over decades of greedy and self-interested policies that blame the misfortunate for their tragedies and reward the successful for their avarice. 

Because nobody - nobody - stays healthy forever.