My therapist says people diagnosed with a terminal disease tend to experience an existential awakening/crisis. Mine has been in full swing for some time now but a short while ago took an extended dark turn. Everyone dies, most people just don’t know how and therefore don’t think of it all day everyday like me.
I recently spent 5 days in the hospital due to a bacterial infection. That whole fever thing I got when we attempted to hike in Shenandoah well it was a bacterial infection of my blood, not a cold or the flu. I have a catheter in my abdomen to help drain fluid I accumulate and the point where that catheter enters my abdomen is an open wound, sounds gross but it’s actually very neat and clean. Well one of my happy outside bacteria got inside through this opening and wreaked havoc. Apparently this sort of thing happens and is normal its just that is usually happens shortly after getting the catheter and is accompanied by crazy intense abdominal pain. I have had my catheter in for 16 months and experienced absolutely no abdominal pain when this infection took hold. So off to the ER I went. I was admitted and spent 5 days on the oncology floor.
5 days with nothing but time to spend in my head. Lots of time. I had my own room full of buttons, tubes, gloves, monitors and all sorts of other hospital stuff. My bed was super sterile, bleached white sheets, vinyl-esque mattress, disposable pillows, all easily cleanable you know in case someone dies in it. This stay was so difficult for me mentally but medically it was pretty straightforward. Bacterial infection of the blood, from a common treatable bacteria, treated with antibiotics, my temp and white blood cells monitored constantly along with multiple blood cultures taken to observe the bacterial progress or lack thereof. Lots of observation, lots of bloodwork and lots of sitting and waiting. I was totally mobile after the first 24ish hours, my meds were administered 3 times a day through my IV so I was not tethered to a pole and could walk around and leave the floor, not that there were many places to go.
Walking around the oncology floor I noticed that my door was the only one without multiple notes and instructions on it and that I was one of 3 people who actually left their room and walked around. Many doors stayed closed always and some when opened had all the lights off, shades drawn and somber family and friends within. Notes on doors mentioned issues with food, weight, bloodwork and some required visitors to wear face masks, gloves and sterile gowns upon entering. These people were dying. I am too and this will someday be me.
And so the downward spiral began. What was the point of anything that I did? I can’t have kids so no genetic legacy for me. All the trips we take, pictures I snap, words I write who will remember any of it when I am gone? And for how long? Why do it? It was not a what is the meaning of life issue but a whats the point to the things I do. To burden the ones I love with memories? I know my family will remember me but life will go on, it just does. My husband will remember me too but in that case life will also go on, he is too young to never move on. I will die, my memory WILL fade. Life will continue to move forward and I just won’t be part of it anymore. I am not going to pass in my sleep. I will most likely be in a morphine coma unable to communicate, on one of those fucking sterile beds, destroying the hearts of the people I love because my body just can’t fight anymore. Welcome to my head.
And so it went for the duration of my stay. I did have moments of get me the hell out of here I have so much stuff to do and see but this time it has been harder to crawl out of the dark. When my medical team finally decided to let me go home it was not without a parting gift. On my last day I was given shiny new tubing in my arm to compliment my abdominal tubing. Joy. This tubing, an IV, allowed me to go home and administer my own meds (awesome) but seriously more tubing is not what I wanted. So now I have what is called a midline, an IV that runs from above my elbow to my armpit in my right arm. Fucking great. I cried when they put it in not because it hurt but because I simply did not want it. I do not want more plastic shit sticking out of me that I have to learn how to use. I don’t want cancer, I don’t want IV’s that last 4-6 weeks, I don’t want fluid in my abdomen, I don’t want meds whose side effects are more cancer. I don’t want this version of my life.
It’s as if two people live in my head and recently the one that just wants to stop functioning is taking over, vocally at least. I learned to use the IV and have to use it 3 times a day for at least 2-4 weeks, I don’t like it one bit. I have sat around a bunch too in my comfy clothes trying to avoid life, contemplating my demise and wondering why I do anything that I do. But there is a tiny voice in my head that knows what matters. It yells ever so quietly to put on pants and get out, see the world, spend as much time with those you love even if ultimately it will end in pain. Make those fucking memories even if you don’t see the point right now.