I am squirming inside of this human flesh suit that is so broken.

I am stuck inside of my head where I cannot stop obsessing about these strange symptoms and sensations that result from not having the ability to move my lower body at all anymore

I feel pressure as my legs swell from being immobile sitting on my wheelchair from the time I wake up until the time I am transported to my recliner for “relaxing” which means being immobile but in a different place where my legs can be elevated.

I am overflowing with ideas and unable to get them out. I feel creativity lurking in me somewhere. These urges are all stuck behind the scrim of pain, depression and anxiety that lays lightly over my entire brain. I can see the ideas in there behind the veil. Some are verbal. Some are visual. I long to paint. I long to write. I reach out for these creative urges and they disappear like mist.

I am a full-time sick person. I spends some portion of every day navigating various tests, specialist appointments, lab scans, blood work, catheter maintenance, financial mess games where I play the “Rob Peter to pay Paul” game on the daily because of the astronomical cost of my newly required 24/7 personal care-giver-at-home care. I planned a budget for my new home, for my new life – but it didn’t include $3000 a week cash to pay people to take care of my most basic needs. Who could afford that kind of money, I wonder? Not me. I wonder what happens when the money just goes away because that day is coming and the pit in my stomach grows with each passing day.

I am a person living on the edge of financial ruin from week to week. I am a person who no longer has the great big important job that paid lots of money (but even that money wouldn’t have covered this kind of cost). I am out of resources, schemes, loans I can never pay off. I am a person stuck in this money race without some magical financial fairy godmother who can help me or give me a winning lottery ticket to cover these kinds of unforeseen needs that I will have for the rest of my life.

I am someone who has something called hyponytremia. This means by body gets dangerously low sodium levels that can cause terrible things to happen like brain seizures and coma. My sodium levels got so low a few weeks ago that I had to be admitted to the hospital where they put me in cardiac ICU – not because I have a heart problem but because I needed 24-hour monitoring to balance my sodium. My body blew up like a giant water balloon because I was so full of fluid. I was there for six hellish days where I wasn’t allowed to eat or drink anything for 48 hours. Just ice chips. When I finally could eat, they stuffed me full of food but didn’t have a single bathroom on the floor that I could use. They tried to get me on a bedpan more than once. You can imagine how that went.

I am a person who was forced to lay in a bed for 6 days feeling my limbs getting stiffer from complete lack of movement but there wasn’t a single nurse or aide who could stretch me out. The ICU was unable to “borrow” a sit-to-stand lift from the rehab unit just four floors below so that I could stand up for even a few minutes each day. I could have also used this lift to use an actual bathroom to freaking poop in a position that makes pooping possible for me but no. The ICU and Inpatient Rehab Units couldn’t get their act together to make it happen. It took three more days after I was finally discharged for me to poop.

I am a person who didn’t poop for nine full days.

I am a person with dry mouth that cracks and bleeds who must limit her water drinking to 70 ounces a day. It takes almost 70 ounces of water to choke down the buckets of pills I take throughout the day. I am a person who is always thirsty. I am a person who wakes up in the middle of the night choking on my dry mouth filled with inexplicable phlegm who cannot drink water to wet her throat. Peaceful nights, my magic time of the past, are no longer peaceful but full of little terrors and sometimes bigger terrors.

I am a person who experiences hallucinations about still being in the hospital in the wee hours of the morning before my eyes open when I get the desperate feeling to move my legs or jiggle my catheter to get the pee flowing again (another new thing). I frantically reach for a call bell to get a nurse in my room but there is no nurse. I am home. There is only a caregiver who really may or may not be able or even willing to help me at that hour of the night.

I am a person who frantically looks around in the dark trying to remember that yes, that is my ceiling fan and that is my picture on the wall of California sunsets that I bought from my awesome friend Anka. Those are my antique flower paintings I searched out on Etsy surrounded by all of the unsightly medical tools and creams, powders and potions to keep me from suffering from skin breakage. That’s my snake plant that’s growing madly even though I rarely remember to give her any water. I’m in my sleeping chair, not a hospital bed. Nothing feels real, though.

I am a person who often feels like she is losing her mind when one of these hallucinations happens in the middle of the day after a nap. Dr. KB, that angel of a woman, explains that I’m not losing my mind but I’m having something called hypnogogic/hypnopompic episodes combined with disassociation. Hmmm. Still sounds like losing my mind to me. But my brain is apparently on fire from the stress of daily life and it’s doing wild tricks that end up stressing me out more and creating these strange visions.

I am a person who requires 24/7 caregiving in my home because I can no longer stand up on my own.

I am a person always in the presence of people called “care givers” who have to cart me around on a lift – even to use the bathroom – and I’d be lost without them but I also want my peaceful fucking house back. There is no peace here anymore. I have so little time alone – after having lived blissfully alone for more than 30 years – that I can’t stop squirming in my skin. When I do find myself with a few glorious minutes of alone time, do I enjoy it? No. I do not enjoy it. Thoughts creep into my head….The “what ifs” that threaten to overcome me. What if I suddenly have to poop? What if my catheter clogs and I can’t empty my bladder? What if a criminal walks into my house to rob me? Or worse? What if there was a fire in the house? What if, what if, what if…the what ifs are endless.

I am a person who has made true, deep connections with some of these caregivers but as soon as those connections are made the person has to leave. Life happens. They move on. I am still here working with some people who are complete strangers without experience caring for someone as disabled as I am much of the time who accidentally hurt me while trying their best to help me. I am still here working with others who know how to do all of the things that it takes to move me, position me blah blah blah but who sometimes simply refuse to do other things I need (like a foot rub, say, for my aching feet) because they “don’t do feet” or some other reason. It seems like it would take finding a unicorn of a caregiver who has both the skill and compassion sides of the job down. An actual unicorn. I’ve had two. And I will love them forever not only for being awesome friends but also skilled caregivers AND loving emotional support humans in one body.

I am a person who feels like she doesn’t have a beautiful accessible home anymore but is a visiting an artfully pretty hospital that’s slightly more comfortable than the actual hospital with fancier furniture. I feel like I’m being watched and judged in my own home – even though I’m not. Or sometimes I am! Who really knows?

I am a person who lacks the agency to keep her house the way she wants it. I am a person who often doesn’t know where the dishes from which I like to eat are located because I don’t get dishes for myself anymore or put them away when the dishwasher is clean and for godssakes Beth, a dish is a damn dish just eat your damn food. Who cares if your favorite plates from your friend Amy in Syracuse are just a few steps away in the upper cabinet.

I am a person who can’t have things “just so” in my house like I used to. My sofa cushions that I manically fluffed and rearranged like a photographer from “House Beautiful” was about to show up at any minute. Now the sofa pillows are just where the last person who sat on the couch while babysitting me left them. Nothing is where I want it to be. See, it’s OK for me to be all particular and extra about things that are seemingly meaningless but I can’t expect another human who is here to “care” for me to also care about the state of my sofa cushions.

I am a person who used to take joy in doing an elaborate skin care routine twice a day – morning and night. It didn’t matter to me that I never leave the house and therefore nobody but me even sees my skin, but it gave me some tiny bit of joy. This former joy now often feels like a chore because I’m trying to squeeze it in before I must ask another human to help me take a shit. Or I’m trying to squeeze it in before I must ask another human to put on my “night clothes” and transport me to my recliner so I can finally take off the compression socks from hell and elevate my feet. I also feel it is important to explain my “clothes” because even I can’t believe it what it means when I say I wear clothes.

I am a person who wears the same thing every day because I dress for ease and relative comfort. I don’t wear underwear or a bra. Too many details there and too many potential straps or elastics to cause me yet more pain. I wear cotton shorts that I buy from Amazon for $8 because they’re comfy and pretty much disposable when they wear out. I wear black shorts for daytime and blue, green or gray for nighttime. I wear black t-shirts that are Kirkland Signature brand because they are longer in the back than in the front and therefore easier tuck in. I could explain the whole tucking in process and why it’s so critical for my caregivers to get it right – but I truly lack the energy right now. Maybe another time. Or maybe not because what could be more boring than an explanation of the intricacies of how my “clothing” needs to be put on my body? Nothing could be more boring. I feel confident in saying this.

I am a person who feels lost in a sea of confusion, fears for the future intertwined with beautiful, detailed memories of the big, glorious life I lived before this chronic illness BS decided that was enough of that. From the big memories glorious in their grandeur to small, oddly but pleasantly repetitive memories.

I am a person who contemplates this life shift constantly searching for small joys that don’t cause more pain. They’re there. These tiny joys can be so miniscule it can be easy to miss them completely but then you stumble on a tiny joy completely by surprise and you think, “Oh my goodness. There it is. Remember this.” Then POOF! The small joy is gone. But it was there. Somewhere in the recesses of my fiery over-stressed mind, those little joys exist in a tiny little glass box, it’s a hand-made stained-glass box. The box is imaginary and only lives in my brain but it’s where my itsy-bitsy joys live.

I am a person that pulls the itty-bitty joys out of the fancy handmade glass box one-by-one on those times I accidentally stumble upon them hiding in my sub-conscious. A beam of light shines down on the tiny box making all of its colors glow and cast diffused color all around the room in my brain where it is hidden. I find bird song. An unexpected flower on a tiny succulent plant. Squirrels running around my giant oak tree while I eat every meal. The color of the night sky outside of the bedroom windows when I wake up before dawn because of some annoying pain. Those rare nights that I’m lucky enough to find the elusive full moon in that night sky. When it’s warm enough outside to open the windows and revel in the cross-breezes created in this perfectly situated house that still doesn’t feel like home. Remembering to look at a particular piece of art completely by accident. When I somehow manage to read one perfect paragraph in a novel that is taking me an absurd amount of time to finish. The perfect song in the perfect key when I’m in the right place, and right physical body position to sing along loudly. Those few seconds within twenty-four hours where the medical weed helps me forget the pain before lulling me to foggy sleep or making me laugh for no reason at something only I know about. Laughing with Sara. Solving engineering problems with Alicia. There are so many more. They’re hard to find. But those moments are there.

I am a person trying trying trying so hard.

I am a person trying to learn to stop trying so hard (but scared to death at the notion of NOT trying).

I am a person trying to remember how to be a person.