Chronic Snarkopolist: Ghost Stories: When Did Sick Get Scary?
Last week we discussed our worst medical moments. This week I want to delve more deeply in our collective psyches. Let’s pull up our Freudian sofas and lie back. Go deeper with me. So – when DID we collectively and as individual autonomous beings first realize that being sick was gross or scary or awful?
Where we, as people, STOPPED HAVING A SAY IN WHAT OUR BODIES DID. And THAT is when it started getting scary. A bum knee we can manage with that because it doesn’t make us “different” we can just struggle on. But a bum brain or chronic medicated issues– THOSE MAKE US DIFFERENT – it turns us into (check the box) OTHER- scary style different. Visions of losing it – all those times I’ve lost it – and I’ve seen others lose it- appear to me. Being a “good girl” I’ve watched as old people were tied to their wheel chairs and then went rigid and spit food everywhere – they peed their pants. They threw food on the floor and patted my hair leaving a sticky mess on my face. “You remind me of my own granddaughter, you’re so pretty- so pretty.”
My body would sink deeper into its own skin willing myself away from them so they wouldn’t TOUCH ME TOO DEEPLY and mar me with their unforgivable stench. We all have our fears of what is too sick. I have my own visions of sick and I automatically associate it with “old people” and their gross talk (not unlike my own more recent talk). And their incessant need to discuss their daily poop consistencies (not unlike my own more recent talk). My Aunt Francie never married. She had no life outside of making food for her brother, Uncle Ralph, making candles of various animal shapes and putting them all over her house, believing in ghosts, and coming down with various maladies.
She used the doctor’s office visits as her socializing. Old yet still firm and agile she’d crisply and quickly walk to the “machine” and get in for her trip to the doctor’s office. The machine was, in this case, an old 1962 pea soup green Ford Fairlane Hardtop that she shared with her brother. She would go and find a REASON to discuss SOMETHING, ANYTHING that was ailing her. If she could not make it to the doctor’s office she would corner my mother and tell my mother about her ailing health. “A long stringy, almost noodle-like substance came out of my nose last night. I really need to go to the doctor’s office and tell him about it. It just doesn’t seem right- it doesn’t.”
I would always find a reason to excuse myself from these talks. They both disgusted and frightened me. Just as even now I am appalled and disgusted and revolted by my body’s betrayal of me. I HATE bodily fluids and the “noodle’s” that come out of my nose. I CERTAINLY don’t want to hear about them then or deal with them – but at that young age – even less. “Mom, I need to go concentrate,” I said. Which was family code for, “I’m going to be a minute in the bathroom, leave me the hell alone.” And of course, My Aunt Francie came back to spy on me, or “check in” during one such escape. I had made an especially large turd in the toilet and was about to flush when she called my mother and said, “Linda – Linda come quickly, Melissa has the best BM’s, I so wish I could still do this.”
Humiliated at the intrusion into my privacy, which at the time I just wanted to punch her in the cooter and run. I could think of no punishment more suiting than a life of painful BM’s TELEVISED LIFE IN FRONT OF THE ENTIRE WORLD for the mortifying embarrassing way she so crassly disturbed and discussed my BM’s. MY SACRED TIME. This was MY PRIVATE TIME. This was my pooping time. I was CONCENTRATING. Stop oogling my poop. Just flush it and leave it be to the ether from whence it came. And because I grew up in a poor household –I didn’t even have the good fortune to have an easy FLUSH toilet – I had a ritual where we had to fill water in a plastic kool-aid smile pitcher and dump it quickly into the toilet as I was pressing down on the handle to get JUST the right flush mechanism to happen.
So – at this moment – in another person’s house – I was GRATEFUL to just be able to FLUSH the shitter and let it be GONE. But NOOOOO. No – she has to come and look at it. If it were a different era she would have snapped pictures and uploaded it to facebook by now. Thank heavens it was the 70’s. My mother, always quick to respect her elders just nodded polite and said, “Well, she’s young.” So YOUNG AND HEALTHY were encoded for me into one sentence. Later, I learned this is not the case. And when I got sick, I got ill at a relatively “young age” and now I’m chronically ill but look “younger” than most. I don’t even “look sick” most of the time.
Yet – I know that there are many older people who wouldn’t blink an eye off the illnesses or surgeries I have been through. So I can “fake” my own health by pretending to be less sick or by not talking about my illnesses. Just hush it on up and BE SILENT. When I worry about my bowel movements or my laxatives or my kidneys I worry as a woman who is CHRONICALLY ILL, not as a YOUNG woman or an OLD woman.
Yet – I do it QUIETLY. I have two sorts of friends, my, “healthy friends” and my “sick friends” because my “healthy friends” do not like to be reminded of illness. They have their own terrorized thoughts brought on by past aging relatives and visits to the nursing homes. Somewhere along the way our collective discussions of health and wellness broke down. I now walk through life in fear that I should be DISCOVERED A SICK PERSON. Only my good friends and my doctors know – REALLY KNOW.
My medium spicy friends can read about it on facebook and say, “Oh- I didn’t REALIZE you had all that going on with you.” And I feel… a little bit like a liar… but.. WELL I AM A LIAR. Every day of my life I lie. I lie when I get out of bed and put clothes on without doubling over. Or when I double over – I stand back up again and GET ON WITH IT. I lie every day I make a joke about the horrors of healthcare without stabbing out someone’s cruel eyeballs.
Every single day that I move forward – I am also lying about my own losses and my own fears. Because 100% HONESTY costs me more than I have most days and so you get jokes and when you don’t get jokes you might get tears. But I have far fewer to whom I feel safe to cry than to whom I tell jokes.
And THIS is where I began to HATE ill health- or at least the bad functioning health. Keep in mind that it is so hidden too. We do not joke about it or talk about it. Suffering in general is not something we do very openly. We shield our children from the hurt and sick animals and people least they become scarred, never thinking they might develop something halfway crazy like EMPATHY or COMPASSION out of it.
Meanwhile, collectively, we also fear illness. We push the sick into hospitals – hidden away and we, the sick, become the polluted and polluting. We even begin to loathe and resent ourselves when we don’t function well. I resent my own bad health.
Even doctors generally cannot FATHOM how we DEAL with what we deal with. They INTELLECTUALLY UNDERSTAND IT- but they cannot FAHTOM how we deal with it. And frankly they don’t want to. A surgeon will discuss scientifically all the details of how and why something will work – but rarely stops to COMPREHEND what it would be like for his wife or his mother or his daughter because doing so costs him a layer of love and if he has to REALLY LOVE ME when he deals with me then he has to CARE ABOUT ME and if he has to CARE every patient then he might just have to open his heart more and more. And then that surgeon will also have to come to terms with his own fucked up past about what being sick means (and how he cannot single handedly champion it into submission by being a surgeon).
I hate being sick. I hate it more than I hate anything else on the planet. I resent my own illness. I resent it to the ends of the earth and back again. And as much fun as I make of it – I fear it too. I have to go pee in a cup to see if my kidneys are losing more function. And I know they are. But I know that even if they are- I have to be here with them whilst they do. And I still have to have more surgeries during that time. And how does one joke about it.
Aunt Francie never told me about this stuff. All she did was make waxed candles by the dozens and set them around her house. And she talked to ghosts. She did! And she was terrified of the back bedroom. She refused to go in there. She once admitted to my Aunt Sally that she heard ghosts talking in there and she was positive that the ghosts where in there.
My Aunt Sally was tickled pink by this because she thought my Aunt Francie was a loon – and everyone loves a loon. But now I realize that Aunt Francie was just afraid. Period. She was terrified of everything and when she didn’t have time to socialize at her doctor’s office and when she ran out of wax, she got quiet with herself, those voices she heard were probably creeping up on her – telling her things she didn’t want to hear. And now I hear what the voices inside her head told her. And now I have compassion for her.
Once, on a double-dog-dare I tried to shimmy the lock on the back bedroom door once to go in there and see what was back there. Uncle Ralph slept upstairs in his own bedroom and she slept downstairs on the sofa. I wanted to see what could make her so afraid. So when she was out tending her garden I sneaked in and peeked through the lock. Everything was covered in a sheet. It was all pretty boring. It may or may not have held a ghost- but if it was one – it wasn’t a very angry or rambunctious ghost. I used a trusty hairpin and wheedled it for what felt like 20 or 30 seconds till I felt it click. The door opened!
And then – Aunt Francie’s steel arm clenched on my right shoulder. “Child what are you going into my bedroom for? This is a private area, I sleep here.” Damn! Damn DamnDamn! “Aunt Sally said you’re afraid of ghosts and I wanted to have a look around and find out why are you are afraid because I don’t see anything in there and I want to see if you have any other wax animals in there and I’m bored and there is nothing else to do and you’ve looked at my poo and you owe me one.” Or something babbled out. She shut the door in my face. I didn’t see ANYTHING. Nothing. NOTHING AT ALL. “This room isn’t for you child. There is no such things as ghosts. Those are just stories we tell to frighten children. No one believes in ghosts. No run along.” And she smacked my backside as I left. But then – the next day something strange happened. She called me. And she asked me to come over and sit with her.
And in doing so she talked to me. Her “machine” wasn’t working and she couldn’t get to her doctor’s appointment. And she felt sick and she was worried that she was getting ill and she WAS afraid of the room and she had run out of wax and that room hadn’t been opened in 15 years and I was the first one to open it and now she was worried. And she held open her hand and gave me a big Styrofoam cup of treats. It was a bribe to spend the day with her.
She wanted company. She was lonely and afraid and nervous and she didn’t want to be alone in the house. THIS was honesty. Above all else in life I value loyalty and honesty. And that day I gave her both in return for her story. I sat with her and listened to her tell me everything about her illnesses – all of them.
Everything she should have told her doctor – from her scraped knee and how it had gone white and has puss on it and was sticking to her stocking see – and she pulled it up and up came the scab (because who would think of a bandaid?) and I chewed my double mint gum and sucked on my butterscotch candies and nibbled my Brach’s bribes. But I would have sat with her without the candy. She was lonely. And her sickness was in her MIND. This was the first time anyone has ever called me “wise” and “funny” in the same sentence. And it stuck. I am no more wise or funny today than I was that day. What I am is someone who gets it. I saw the ghost that day- It was the ghost of LONLINESS – OF FEAR – OF OLDA GE – OF BEING NOT UNDERSTOOD. Of being the crazy cat lady. Of doctors hating you for being unloved and unlovable and of them not being able to fix it. I got it then and I get it now. And I never ever hated her for being a doddering old woman again. She wasn’t crazy any more than I am. She was just fucking lonely and didn’t have anyone to love her – to really love her. And that was not her fault.
“Little Linda (that was her name for me because she was never arsed to learn my real name) you’re so wise and so funny- come visit me every week.” “I will Aunt Francie, ‘but you need to stop picking that scab and keep a bandaid on it or it will get infected.
Here – stop picking your nose too – use a kleenex.” And that was how it went from then on. I didn’t LIKE HER. But I feared her less. I feared the ghosts MORE because after that I too believed in them and I still do actually. I still do.
And her pie was for shit. Everything in her house stunk with age and ill use. I don’t know what that woman was doing but somehow salt and sugar and cornstarch were all the same in her cook book. When she died every doctor in Mansfield, Ohio breathed a collective sigh of relief and had more open space for the “truly sick.” But to ad to this – I want to say—we all need space for our own individual illnesses, our loneliness, our fears, our STORIES – to share and to love and BE WHO WE REALLY ARE. I KNOW THAT SOME DAYS I’M REALLY SICK. AND SOMEDAYS I AM JUST LONLEY AND WANT HELD. Some days Aunt Francies Ghosts have me by the short hairs. We all need space for our freakiness.
We’re all strange people and beautiful people and weirdoes. There is huge big giant love inside of us… and there is also a landslide of crazy that is not really crazy. It is just names we call it to pathologize it and make it wrong. It is just YOU and ME being PEOPLE. Sometimes we are ok. And we fear the big bad sickness too soon and too young. And we fear what is inside of us. And I owe myself a FUCKING APOLOGY today for fearing my own health. I’m sorry Melissa I love you.
Yes – it is fine to make fun of it and have a good laugh. But sometimes we need to meet each other with some genuine beauty too. And some understanding. Let’s have a go at it shall we! If we didn’t ask for it – we might as well GO BIG OR GO HOME! PS – I do not have any noodles coming out of my nose. But my last surgeon did play a beautiful symphony on my small intestines. I hear it might well win an award. Next week is my pooper surgery too with Doctor Mchotterson oh my! What about you? Any scary medical things happening for you in the near future? What about repressed or not so repressed memories? Do you carry the scars of your bowel movements being scrutinized by the elderly? Did you watch someone have seizures when you were young and not understand? What do you think it is about our collective process that makes being sick a BAD THING and makes us sweep the sick and dying under the carpet? I’m interested in hearing your views? Now that we ARE sick are we that bad? A friend of mine told me, “Girl, once I told him about my thyroid condition he ran like a dog.” And I was appalled.
I wanted to BRASS KNUCKLE PUNCH THAT ASSHOLE IN THE CHEST for running off because my friend is gorgeous and sweet and hot as free flowing lava. What makes people run away from easily controlled illnesses? What makes us hide our illnesses or apologize for them or feel they are so awful? If you have me – you HAVE my illnesses too. So why then do I never look to date because I realize that dating a woman with illness is more than most men would wish so I don’t even ask that of him. Am I worth it? I WANT TO BE! Why do I walk without a cane as often as I can even when I REALLY should be using my cane for balance on most days? Why do we do it? What is it about our upbringing and our cultures? What stories do you have hidden away? What armchair theories have you woven for me? What tears do you need dried? Gather around – we can all do this together.
This is OUR VENUE. And I want to get it out. I’m sick of the silence but have yet to find any way to deal with it other than acting like a “normal person” out “there.” Where our stories- OUR HEALING STORIES – let us heal with them – each other and ourselves. One of my closest friends said that to me – “I cannot be your friend anymore if you do chemo – because I cannot watch you die.” In those moments I felt my life shatter – because I heard in her words every single person who has abandoned the sick resonate around the world. When we need you the MOST you throw us away the hardest. But why? WHY?
And this what I am trying to figure out. What is it she REALLY feared? And when I didn’t die what then? Who was better off? In fact – I was funnier and smarter and more kind than ever. If she had stuck with me maybe SHE would have healed a little too. And maybe there is fear in the healing of all our wounds? I try to have compassion – I try to use humor because a spoon full of humor and funny is easier than me shoving it down your throat and calling you a hateful selfish fucking cunt how dare you abandon me.
But sometimes – sometimes there is no room left for anything but honesty. And right now I’m in a place of honesty – right now. I’m not afraid, I’m not sad, I’m not angry or particularly happy- I’m just wondering.
What are your stories? If you share them maybe we can all start understanding and healing a little. I’ll be seeing you next week!
Same time same place! Kisses!
Tags: chronic autoimmune disorders and disease management, Chronic autoimmune disorders column, chronic illness, chronic mental issues, chronic pain, Chronic Snarkopolist, chronic suffering, chronically medicated, When did sick get scary, written by Melissa Travis