I realize I have been absent of late and my excuse has been that I’ve had difficulty finding words, something I intend to remedy this year beginning today.
I am still a full time patient recovering from a great many medical obstacles and it isn’t always easy to find the energy to write.
That isn’t entirely the truth though, because it isn’t the physical drain that has had me so clogged as a writer but rather the psychological drain.
Illness has a profound and powerful effect on the psyche. It wears on one in ways that few outside of this experience can understand. It’s difficult to find words to express the monotony of day to day struggles within this journey. How does one adequately describe the ongoing pain and the frustrations that come from feeling gaslighted by medical providers or from fighting intense gender bias? It’s profoundly difficult to continue to find words in such circumstances without feeling like one is a burden or a nag.
Additionally, coping with a veritable avalanche of emotion from trauma and illness feels suffocating to the soul. How do you explain to the average reader what it is to experience such horrors as I have without turning the entire piece to darkness? What am I supposed to say?
For a very long time I was able to keep up the facade and write highlighting mostly the beauties I’ve found in this brokenness, but as I’ve tried to come to grips with the truth of my existence these last several years, I’ve discovered the most unfortunate truth:
I have been handing out Blue Pills.
Do you recall the Blue Pill? In the Matrix before Neo becomes a leather jacket wearing Badass, he is faced with a choice between two pills:
You take the blue pill—the story ends, you wake up in your bed and believe whatever you want to believe.
You take the red pill—you stay in Wonderland, and I show you how deep the rabbit hole goes.
Remember: all I’m offering is the truth.
The Red Pill represents what I want to believe I stand for:
Sometimes uncomfortable and brutal truths of reality
Uncertainty but a peace that comes from facing it willingly
The Blue Pill represents some things we all want but not necessarily gotten by honest work and truth:
Peace and the blissful ignorance of living inside the lies of illusion and omission
In favor of self preservation, personal privacy and sanity, and the idea that I must always show the beauty that comes from the brokenness, I have been handing out blue pills to those I know in real life and those who know me here, deftly continuing to hold up a facade that has kept certain truths hidden and off limits.
The truth is, there is beauty to be found in my brokenness, just as there is beauty to be found in yours. If anyone can find it, I can. That doesn’t mean, however, that I can’t be angry or sorrowful at times for my brokenness and for the things that brought me to this place of being so utterly shattered in every area of my life.
So to balance things out a smidgen, here are a few red pills:
I miss my foot.
I miss the woman I was 8 years ago when I was just healthy and independent, able to be and do anything I wanted to be and do.
I miss being able to go out and not have to consider how long it might be before I could go spend a penny because most “handicap accessible” restrooms aren’t really accessible and despite the law restrooms aren’t really “accessible.” I’m sorry, I shouldn’t have to ask my date to move objects out of the way so I can go to the loo or have to get the assistance of 4 strangers in the restroom just to get into a stall.
I miss having my career and never worrying about how I was going to afford things. It was really fantastic to feel like a successful human adult.
I miss not having to judge clothing I was purchasing based on its functionality both within and without a wheelchair rather than just how beautiful they looked and how beautiful they made me feel. Warm sweater, cute standing up, bunches around my waist when I sit making me look lumpy, sleeves get in the wheels ~ pass. Shirts purchased 3 or more sizes larger than my body is to get something with enough length to look nice when I’m sitting ~ my sewing machine is in storage 1,800 miles away and I won’t pay someone $40 to alter a $35 shirt that isn’t worth $10.
I am tired of people sending me articles about “disabled” gadgets. Yes, they are cool. Yes, I am happy that people are being mindful about trying to think about the world from *this* point of view, but to be frank: able-bodied people trying to make the world better for disabled-bodies can come across dense and ableist when disabled folks aren’t in the conversation and even when they are it’s still insensitive to share this stuff with me just BECAUSE I have a disability. No one likes to be defined by a fact of their existence rather than the person they are inside and having things constantly being shared that simply say “disabled” is tiresome because I’m so much more than my foot that isn’t there.
I miss not having people always trying to convince me I’m still sexy because they assume I don’t think I am. Hi. I’m Gwen. I had my leg amputated to give the other women more of a level playing field. I still get hit on… a lot… and not by devotees, by people who have all their limbs and who are turned on by everything else (even when they get all shy about my stump). Ergo: don’t be weird. Stop telling me I’m sexy no matter what everyone else thinks because you’re going to give me a complex because everyone else does not define my sexy by a left foot.
I miss being able to go places without worrying if I can get in there because I don’t want to deal with ignorant people and spaces that are only conceptualized for people who are standing. I didn’t go into a bakery the other day but sent my friend in because it was too small and crowded with displays and people who don’t see people who aren’t at their eye level. Things I am not: I’m not a butt person.
I miss people tired of people making a big deal out of things and being overly helpful. Honest to God, I could have died of embarrassment when an entire restaurant got up and moved tables and chairs because when I was leaving some waitress insisted it would be easier for me to leave through the side door instead of letting me leave the way I came in. Making me feel like Sideshow Betty is not helpful. Running up to me in a parking lot when I’m getting my chair out of my car doesn’t make me feel helped, it makes me wonder if I’m about to be assaulted. No, I don’t need you to push a shopping cart for me. Overly helpful people are creepy and weird. I am tired of them. I try to be gracious, but come on… I don’t need you to cut my food for me or wipe my bum!
I’m tired of stupid questions. Yes, I drive, and asking, “Really?” with your face screwed up sideways just makes me want to face mush you. It’s not a big deal. I lost my left leg not my right so it’s exactly like it was before (yes… really…), which is not to say that modifications to the car are not simple to do to make it possible to drive with the left foot or with just hands. I don’t know why you’re shocked. I use crutches to move from the back of my car to my door… ooooo! I cook and clean exactly the same way you do, stop asking. Guess what? I put my pants on the same way too. And God help the next person that asks me how I go to the bathroom or how sex works because if they honestly don’t know how that stuff works I don’t know how they made it to adulthood.
I am tired of people acting like I’m insane for having a sense of humor about my condition. I do actually have a leg to stand on here with this… but only one. I only need half the legroom. I try to count to ten when people say things but I can only count to five…
I am tired of the exodus of people who made promises they couldn’t keep to be there but who, in the end, couldn’t hack it saying MY journey was too difficult, or too long, or too dramatic for THEM to continue to be in my life. It’s sad. I miss people, even if maybe I shouldn’t.
I am tired of always being expected to hand out Blue Pills so that other people won’t be upset and triggered by the ugly truths of my existence.
Brokenness is painful even when we are able to find the beauty that comes from it…
And no one should always be expected to find and provide something funny or positive to talk about in the face of brokenness, whether to placate the feelings of others or to maintain an image of strength and perfection, because everyone has the right to feel and experience all the emotions that come from being shattered.
So please consider this the recall notice:
I decided to reread this one. I wanted to add that the red pill allows us to show our love while at the same time yelling very loud to release the energy. To cry for an hour to four from the deepest parts of us. I want to throw cups and plates. Kick the people who say it’s all going to be all right. We are allowed to feel. Whether we are the ill one or the caregiver. Each is equally difficult and sad. I am tired of pretending that all is well. I want to kick. I want to through the blue pills away and tell the entire truth to everyone but I know that’s not not the right things either. People tell me how strong and organized I am. I am only doing what needs to be done. Nothing more. Now it’s all on my shoulders. I carry him and the house. I make all the decisions. A bit different after 45 years. Doable? Yes. Enjoyable? No. Worth screaming about? Yes. I miss what my husband once was. The red pill allows me to yell and cry. 🌹
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Yes. All that you just said.