Superstitious

July 21, 2019

I was raised really well. If there was a manual on how to raise a confident, self-assured, yet empathetic and compassionate daughter, my parents must have read it, if not wrote it. I was actively involved in Girl Scouts for over twelve years, I learned to play a few instruments, I competed in speech and debate, overall, I had a diverse set of interests that built me well. My parents encouraged me to learn to express myself through different creative mediums so that I could have a healthy outlet for emotional expression. My parents taught me responsibility, commitment, and were careful to teach me to see opportunities for kindness and compassion around me.

When I was in nine years old I secured a meeting with our principal to talk with him about two points I thought needed changing around the school. I presented my researched argument about why and how we should switch to organic milk in the cafeteria and start school-wide recycling. I doubt my parents were surprised when I came home and told them he said no to all of my requests, but they never told me beforehand that it would be a waste or that I shouldn’t do it.

When I was twelve, we were on a road trip from our home in Alabama to my grandparent’s home in Massachusetts. We stopped to visit my mom’s best friend along the way. She had a Reader’s Digest magazine with the story of the Gardner Museum Heist and their $5 million reward to anyone who brings a clue to the police that leads to the recovery of the art. I was enamored with the idea of solving this case. I brought the article to my mom and dad and told them I was going to solve the crime. They both looked at me and said, “okay.” Coincidentally, the Gardner Museum is in Boston, twenty minutes from my grandparent’s home. For the few weeks, we were in New England, my mom and grandma took me to the local library so I could do research on the Heist and the art, they took me to a store to buy a notebook and pen so I could collect my information. My mom and dad even took me to the museum itself so I could see where the art was taken and look at where the thieves entered and exited and theorize. If I remember correctly, I think they even let me call and question people about the heist. I fully believed I had the ability to crack this famously unsolved case and I took it very seriously. My parents would ask me questions about my thoughts to help me flush out my theory. When I asked my parents all these years later why they humored me with all they did my mom said, “Someone’s going to solve it, why couldn’t it be you?” Meaning, they didn’t humor me at all, they supported my incredibly ridiculous dream.

Regardless of what it was growing up, when I wanted to build or create or form they encouraged me to do so, told me they were there if I needed help but didn’t do it for me, and if it failed, they helped me figure it out why but didn’t outright give me the answer. If it succeeded, they celebrated along with me. Regardless, they always told me they were proud of me and they always told me to clean up afterward. If I failed, they didn’t just pick me back up and tell me to try again, they’d sit with me in the failure and talk or be still until I stood back up myself, and then they’d give me a hug and tell me they loved me and off I’d go. I had a childhood of learning that all it took to problem solve was creativity, hard work, and tenacity. I had belief in myself, belief in the gifting unique to me, and the knowledge of loving support welled up deep within me.

Meaning, when I was fourteen and saw how inadequate the suicide prevention education was around me, it seemed only natural to start an organization to meet this need. My parents didn’t blink an eye. And it didn’t seem odd to me. I put together a structure, secured funding, and went off to do work. I still remember sitting across from the principal as I pitched my idea and answered every question he had about its feasibility and liability and operations. And I got the green light. After we were up and running for a little bit, the local news station caught wind of what I was doing and sent a crew to do a story. That caught the attention of the state’s department of public health, which came in and trained me and the rest of our teachers on how to talk to students in crisis. Our working relationship leads to them sending me to conferences to train educators, social workers, counselors, and administrators on how to start similar programs. By the time I graduated high school, I had given over 300 presentations and had been running the program for three years. The organization still stands today and is still active, to my knowledge. I found out recently it was the basis for pending state legislation to improve our teen suicide prevention education. It didn’t seem odd to me that I did this or that adults worked with me more as a peer than a student. I didn’t understand why people said it was impressive, I was just working to solve a problem in a way I knew how. I knew who I was and what I could do, and so I did it. Just like my parents taught me.

I never focused on what I couldn’t do, because if I hit that wall, I’d just learn how to do it or figure out how to do it differently. My identity became rooted in my capability. Not in an arrogant or cocky way, just in a simple, “I am capable and I can do this” kind of way. 

A year after my final talk on behalf of the organization I founded and steered, the same day I received a signed certificate of commendation from the President and First Lady of the United States for earning my Girl Scout Gold Award, almost to the day, I had brain surgery.

When the doctor told me I’d be having brain surgery, and we scheduled it for six days later, we also scheduled my post-op appointment. Two weeks after my surgery I would go back to the neurosurgeon’s office to get my stitches and staples out and do a final checkup. I confirmed with them then I would be good to go, right? I could go back to school the day after that checkup? He said I’d be good to go, and if I felt up for it, there would be no reason on his end why I couldn’t go back to school after that.

So I told everyone that I was having brain surgery on September 10th, but I’d be back at school on September 26th, the day after my two-week checkup. I didn’t understand why everyone kept asking me to consider taking the semester off, that maybe I would need more time to recover. I brushed them all off, the doctor said I would be fine, besides, I’m Madison Darling. I can solve any problem or work hard enough to move obstacles. I’ll be back at school September 26th, maybe we’ll even drive up on the 25th if my appointment ends early enough.

Yeah, so that didn’t happen.

The chemical meningitis put me back in the hospital, and I’d like to say that set back my recovery and that I could have been at school earlier, but then I’d be lying to myself. I had brain surgery.

Brain surgery.

On the night I got my stitches out, two weeks post-op, I asked my mom and dad to show me the picture I had them take of the back of my head the day I was leaving the hospital for the first time when the bandages came off post-op. I took the phone, glanced at the back of my head, dropped it, and screamed. And immediately started to cry. Eighteen staples, sixteen stitches, ten inches of scars, no hair. I. Had. Brain Surgery. Oh my goodness I had brain surgery.

At that moment, it became real. I had brain surgery.

But I still didn’t think I was really affected, that I wouldn’t be able to be normal in a week or so. The chemical meningitis only set me back like a week, I should be fine in a week.

A week came and went. I couldn’t stand in the shower; I couldn’t raise my arms to wash my hair. My mom had to bathe me. She had to help me out of the tub and then comb and dry my hair. I would sit in the bathroom, tears streaming down my face, silently, while she brushed my hair and helped me get dressed. I couldn’t make myself something to eat if I was hungry, I couldn’t go anywhere, I couldn’t even be left alone because there was nothing other than sit and watch TV or sit and read that I could do on my own. It might have also been because I would have these inexplicable emotional outbursts that were a result of the chemicals in my brain adjusting to the new environment and they would start for no reason and I’d be inconsolable for an unknown amount of time. Super fun for whoever was sitting with me that day.  I’d never known what it meant to legitimately not be able to do something, especially something so simple that I’d been doing for nineteen years. Sometimes, I still forget that I have very, very real limitations to my ability. Even with something as simple as walking.

They got me a cane. I was nineteen years old and they got me a cane because I couldn’t walk without the help of another person. I refused to use it. Not outwardly. I didn’t pout and tell them I refused to use it, it just sat beside the couch untouched. I’d plan my movements when someone else was around or going in a direction I wanted to go so that I could use them rather than the cane. Or I just sat there until someone asked me if they could get me anything. I just refused to use the cane. It was the last possible insult on top of my injury. I’m nineteen. 

Three weeks or so post-meningitis, I had stayed up too late. I was reading a book on the couch in the living room and lost track of time. My parents had gone to bed and my brother was staying at a friend’s house. I now needed to make my way from the couch in the living room, down the hallway that turned twice, to my room at the very end of it. I looked at the cane and looked away. I didn’t need it. I uncurl my legs from under me, place them one-by-one solidly on the floor, and without moving my neck too much, start to put my weight on top of them. Holding onto the arm of the couch I shuffle toward the hallway’s opening. My left hand on the couch, right arm outwardly stretched toward the door frame, my head and neck still, I stretch until I think I have it, and then suddenly I’m down. I’m on the floor, crashed my knee hard on the cold tile. And I shatter. I burst into tears. My right knee hurts from the landing, my neck and head hurt from the sudden, jerky movement, my heart hurts from the moment. I can’t help but cry as I sit three inches from the cane that would have prevented this. I can’t help but cry as I realize I am not capable. I can’t help but cry as I realize there’s no creativity, no amount of hard work, no tenacity that will work around this problem. I can’t do this. I can’t will my body into being different; I can’t want my body into being able. I can’t.

I was at the highest of highs. Then, in the span of a four-hour surgery, was in the lowest of lows. Crumpled and crying on that floor after far too long, I reached for the cane, pulled myself up, and made my way to bed.

I forgot a piece of myself in that moment.

Over the next few years, every time I started to heal and started to remember the part of me that could believe in myself I’d find myself right back on that floor. When my arm wouldn’t work and I was in the hospital three weeks into my first semester back after brain surgery, I was back on that floor. A few months later when I had to pack up my apartment at school and move back home because I was passing out for no reason and couldn’t live alone, I was back on that floor. Later that fall when the paramedics had to stop my moving car and pull me off the road because my legs stopped working while I was driving, I was back on that floor. Time and time again my mind brought me back to that floor, my incapability washing over me like defeat and shame. And time and time again I’d forget that part of myself that believed in me.

And now I’m starting to build a collaborative relationship with my body and now, I’m starting to have success at work based on what I can do, and now, those parts of me that really shine are starting to resurface. The parts of myself that remind me why I can believe in myself, the unique gifting rooted in the knowledge of loving support are peeking out into my work and my life and others are starting to see it. They’re starting to speak into that, starting to compliment me and asking why I ignore their remarks and my own proof. And now I shy away and now I downplay their words and now…

Now I send myself back to that floor. 

I don’t let myself up, I don’t let myself leave. I don’t let myself be capable. I don’t let myself feel able.

I didn’t think I was the superstitious type but I find myself believing deep in my heart that if I begin to believe in myself once again, I’ll find myself back on that floor. If I start to walk my body will attack and I’ll fall hard again. I felt capable before and my capability was ripped from my hands so forcibly my ability to hold onto anything but my own fallibility went with it.

I’m so tired of feeling something like flourishing, blinking, and opening my eyes to the cold tile beneath my hands. So now I’m afraid to let myself feel able. It will only be fleeting.

But I’m tired of sending myself back to that floor. I don’t know how to accept the compliments people give, I can’t remember how to believe in myself without my heart whispering that it will all be gone soon. Even as I write this, there’s a small voice within me that tells me it’s nice and all that I want to feel able again, but if I live this desire out too loudly it will wake the sleeping beast that is my illness. Currently lying dormant within me, it only needs a phrase of self-assured words to be spoken and off it races through my veins until it finds the source of confidence in my heart and feeds until I’m weak and crumpled back on that floor. One little voice has such a hold over the rest of me. But I want so desperately to be the daughter my parents raised.

And I don’t want to believe my body is maliciously waiting for me to get some semblance of self-worth and confidence only to then choose the next area to malfunction that will bring me back to a life of inability. I don’t want to believe I am at the mercy of my body’s tyrannical rule, waiting for it to grant me ability at its whim.

I want a wider definition of capability.

I don’t want to have a definition of ability that rests on what I can do physically. I have a brilliant mind that has largely been untouched by my illness. I can be uniquely creative and innovative. I have a capacity to care and love with great abandon. I can learn and grow. I have a self-awareness that is hard to come by and I thrive in an introspective environment. I can create beautiful and inviting spaces and I can communicate in a clear and accessible way that evokes feelings in others. I am incredibly disciplined, sometimes to a fault. I can see how the dominos will fall in a given situation. I can look at a system or environment and see how it can function more efficiently or effectively. I am multi-faceted and I can do a great deal. My ability to use my legs, which can sometimes come and go, but it does not lessen my ability to do my job well or to be a good friend, it simply makes me tweak my plan or makes my approach look a little differently. But it no longer has to send me back to that floor. 

I can build a collaborative relationship with my body to where, when something goes wrong or I lose a little bit of physical functioning, I understand it’s not an attack on me by my body to thwart my sense of self, but rather an aspect of my physical make up that I’ve got to keep in mind. It’s an opportunity to apply a little creativity and innovation to myself and my situation. Or it’s an opportunity to evaluate if what I’m spending my energy and time on is really worth it. It’s a great asset in intentionality and a life lived well. My body is not trying to steal my belief in myself, meaning I need to stop throwing it on that floor myself.

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