Don’t Mind the Dying, I’m Still Alive

Today I sat on the couch, and I thought about dying. Not that I wanted to die, or that I thought treatment would kill me, but the amount of effort it took to get to the couch, and the enormous amount of pain I’d been in upon waking up, I honestly could only thing about death. I don’t think that’s something people who don’t deal with serious illnesses really can understand, so if you’re a healthy person reading this, thinking I’m suicidal, or whatever, let me try and explain it as best as possible. Note: I’m heavily medicated so whether or not I make sense, won’t be entirely clear to me until I re-read this at a later date.

When I woke up this morning (or yesterday I suppose since it’s after midnight now), I registered that it was Monday. I also realized it was almost 1pm. I went to sit up, and was immediately struck by two things almost simultaneously. First was pain, horrible pain, shooting through my spine and into my hips, along with a headache that made me wonder if I’d finally had a stroke. The second sensation, was nausea. Now, I deal with chronic nausea, and I knew this was different. This was flat out, “I’m in so much pain my body wants me to vomit,” nausea, and I knew I could fight it by just not moving. So I didn’t. For twenty minutes I registered that I needed to pee, and wanted to get up, but that the pain was simply too intense to get out of bed.

When I hit twenty minutes, I contemplated peeing in bed. I have a mattress cover. 

Eventually I was able to roll to a seated position, and crawl from bed into pajamas that at least covered all the essential bits and pieces. My roommate had been out late the night before, and I wasn’t sure if he was home from work because of it or not, but I didn’t need to be exposing myself on top of everything else that was going on. I made it to the toilet, and then pulled pillows, heating blankets, and electronics from my bed to my couch. I was sure I wasn’t moving today, but I didn’t want to throw off my sleeping schedule by spending the whole day in bed. If I napped on the couch, so be it, but if I stayed in bed all day watching movies and TV, I’d never sleep that night. (As it stands it’s almost 2am, and I’m still awake, so I guess sleep is still elusive.)

I had to think about a lot in the waking hours. Namely, as terrified as I am regarding Rituxan treatment, I can’t live life the way I am. Even typing this is painful. My joints scream, but I feel this urge to write it all down, get it all out, not knowing if I’ll be too sick tomorrow to write more, or if treatment will mean hospitalization and further restrictions. The infusion center set me up with a first thing in the morning appointment Friday, but there has been some discussion regarding my desire to be treated at a different (closer) hospital, and actually to be treated in a hospital…period. Infusion centers near hospitals are nice, but my body likes to go rogue, and I don’t love the idea of being somewhere where the protocol is to call 911 when things get rough.

It will get rough. That’s my life, in a nutshell, rough.

The pain is all consuming when it hits the large joints. I’ve dealt mostly with hand and ankle pain, but the back and hip pain that has found me in the last several days is a new kind of pain that pushes me into that odd realm where mortality is a thing. I don’t have cancer, but I’m staring down drugs used to treat cancer, or help with organ transplantation. I’ve had friends ask about bone marrow transplantations, and whether that could yield a cure. I myself have wondered about autologous stem cell transplantation as an option, even if that meant hospitalization of several months, and no immune system whatsoever.

Risks. Side effects of all my medications, mixing together, and almost all including that little side bar: death.

You think about death when you’re chronically ill, not because you want to die, or don’t want to die, but because at some point you have to acknowledge that it could happen. My dad once joked he could pull from his 401K because he was never going to get old. Now he’s probably wishing he had saved some more money. Remissions, flares, risks, rewards, we stare them all down and haggle with the happiness because we know the disappointment is coming.

I want to live. Not just like I am now, with a pulse, but honestly, truly, live. The guy recently mentioned the fact that Rituxan could actually give me a quality of life back. He always insists I’m normal, but I’m not. I know I’m not. I have a rare condition, and it means that I’m not normal. I get sick easier. I take dangerous drugs to manage symptoms. I live in a world where not sleeping enough could cost me my life, literally. Still, I want to live.

When I wrote work today to let them know I’d need time off, it was hard. I knew that I could, and would, be applying for disability, at least for a while, but it was one more punch to the gut. One more lack of normal living. I like bartending, even slow shifts with coworkers I’m not that fond of. I like feeling like I’m making my own money with my own abilities, even though I’d rather work a 40 hour week in a laboratory, because that’s my degree, and my passion.


Dying isn’t just something that happens to your body. It happens to your dreams, too. I’ve adjusted my majors, my expectations of myself and others, so many times it’s started to seem like a never ending cycle. I’ve developed a despondent self-loathing that I really need to let go of. I feel dysfunctional, broken, less worthy of love and affection, because I’m not healthy. I don’t live my life, because the part of me that expects to be treated as a whole person died when my health died.

I’m not sure if Rituxan will work. I don’t know if I’ll be lucky and go into remission and avoid dangerous secondary infections. I don’t know if the guy I’m seeing will ever look at me the same way now that he’s seen me sick numerous times, and is about to watch me go through some intensive IV treatments. A part of me has died, it died when I was 21 and knew I had an autoimmune disorder like so many in my family, and it died when the final diagnosis came 7 years after that. With each medication escalation, dreams died, I changed, and while the fight in me has never died, and won’t die, I do wish I had more of who I once was, left inside of me.

You’re happy to be alive, but you’re also sad that you’ve lost or changed so much of who you once were, in an attempt to save yourself. Sometimes you don’t recognize the person you’ve saved.

Don’t Mind the Dying, I’m Still Alive

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