Thursday the 13th

Written by Alyssa Carbutti, with support from the DAC team

I’ve been waiting for today to come. I’ve been counting down each sunset, plotting some grand soiree. Some celebration that I hadn’t yet been able to celebrate. I never formally recognized the magnitude of July 13th. 

On this day 2 years ago I sat in my rheumatologist’s office and was told that I am in remission. What the hell does that even mean? is what I thought to myself. I didn’t smile. I didn’t get up or start jumping around. I didn’t hug my rheumatologist, or my mom. I just said “ok.” They both stared at me, just the 3 of us in the room. They asked me if I was happy, and I responded “yes” with a solemn expression on my face, somewhere between a look of betrayal and defeat. I didn’t believe the words that came out of the doctor’s face. I felt insulted, lied to even. How could he do this to me? Like I’m supposed to celebrate with no cure. No certainty. No “you are better forever.” I’m just supposed to settle for something along the lines of “I don’t think it will come back, but it may.” No better forever. Just that I will have to live with chronic nonbacterial osteomyelitis forever lurking in remission. 

I don’t remember what I did last year on this day. I think I just acknowledged it in passing—like an old friend you nod to while walking through Walmart in your hometown on college break. I still did not accept my fate. 

I had a plan this year—to celebrate the two year anniversary of my marriage to this infinite grey area. The in-between of life, and life within my disorder. It’s not quite a box, more like 4 squiggly lines that don’t quite meet at the ends. At least there is a way out for me. Sometimes I am inside the squiggles, other times I float along the lines—riding them like a slip n slide. 

The plan: 

I was going to hike a mountain…more of a hill in Connecticut. I would enlist my highschool best friend and boyfriend on the journey, as both rode into battle with me in that 8 year journey. They weren’t there in the beginning, but they didn’t miss the end…and they made sure I didn’t either. After this upwards journey I was going to write on a plate. I saw this idea online with people doing this little project after breakups. I thought this might be fitting to have a ceremonial shattering to symbolize the hopeful end of the longest relationship in my life. I was going to write out all the little moments that came to mind from my journey with Osteo, documenting all the special memories we shared together. Then I was going to smash it (inside a bag of course…I’m not an environmental monster) on the ground. Then my plan was to glue together all the pieces to symbolize how I am still here. 

“I AM STILL HERE” I would scream on top of the mountain in some dysfunctional glory of a person who barely survived the depression and heartache of such a shattering caused by the unforgettable emotional and physical abuse of chronic pain. I would hold up my arms, jumping up and down to show off my leg strength. The fading scar on my left shin would glisten in the sunlight. 

It was going to be beautiful. 

What actually happened: 

The day came with the realization that it isn’t really that different from yesterday or tomorrow. All just a made up concept of time. It felt silly—this idea I had in my mind, to celebrate. 

Both of my warriors were working. I had already taken off the day. It felt silly trying to explain this plan to someone who wasn’t there. Someone who didn’t understand what it meant, what I meant. I’m not sure anyone on the planet would completely understand…that’s the inescapable loneliness of experience. 

I made plans anyway with a new friend. A college friend. We would get dressed up and go to the winery. 

I woke up at 9, except we never picked a time. He slept until 12. He drove 30 minutes just to see me! (I realize this isn’t an unreasonable amount of time, but coming from a very depressed former mindset, this feels like a huge labor of care. Perhaps even love. I have a hard time letting people love me.) We decided to ditch the winery and go eat at my place of work, a wing place—very ironic with me being a vegetarian. I still wanted to look nice to greet the day, so I put on my favorite outfit: blue jean overalls, a red crop top, and my brand new white shoes. I even, in a rare occurrence, put on some eyeshadow and mascara. Fancy. 

We sat at the bar and talked about his new love interest while bonding over our appreciation for John Lennon as his voice came over the speaker. He plays music you see, my friend. He always sings “Hey There Delilah” to me on his guitar while we’re at parties. He’s thoughtful like that—he knows it’s my favorite song that’s on his lineup. We sat there laughing over a chicken wrap (for him) and bruschetta flatbread (my favorite). My coworkers came over in a silly little display to serve me my plate, waving it through the air saying “Here madame, your food is served.” They always know how to make me giggle. 

It’s good to have friends. Especially friends that didn’t know me back then. I just get to be me. No Osteo entering a mutual friendship, causing worry. 

He worries about me in normal ways, like if I’m having a good time, or if I got home safe. He doesn’t worry if I’ve fallen down the stairs, or if I’m dizzy on meds. If I wince, he doesn’t panic into a frenzy of scared questions regarding swollen bumps on my leg…he just assumes I’ve tripped, or smacked into a table. Something simple. He doesn’t expect me to be complicated all the time. 

We ended our time together at my favorite coffee shop down the street. Also ironic because I hate coffee. I sipped a chai latte and snorted foam out my nose while he teased me for not being an “adult”…whatever that means. I guess it’s because I don’t guzzle black dark roast like a choo choo train. No…I prefer to sip my tea.

It wasn’t the day I had imagined, but it meant the world to me. It just felt right. It was somewhat symbolic that I spent the day with someone who only knows the “fixed” me. Again, not necessarily cured, just better. Stepping into the future, with a new friend to accept me. Me, not me and Osteo. A clean slate. 

Still, something felt unwhole about leaving the day like this. I informed my family of the remission date. I told them of my grand plan gone wrong. Mom knew what to do. She took me to the dollar store and we bought a plate. I got a new sharpie too. It had to be a special pen for a special purpose. I put the task off for a while, the weight of it feeling too great. At 11:45 pm I decided that I was still going to write on that plate. I needed to acknowledge the past in an intimate way. I scrapped the plan for memory lane and just started writing. 

The plate read: 

I can’t believe it’s been 2 whole years since I was told that I was a successful con-artist. That I had tricked my body with pills and injections—lots of needles and blood tests. I tricked my body into forgetting his name…forgetting about Osteo. Osteo no longer abuses me—no longer follows me around night and day—no longer haunts my dreams. No longer prompts my screams. I no longer cry over him in a toxic relationship of spontaneous swollen bones. A temperamental mood shifter. Day to day highs and lows. Laughing one moment, the next doubled over a railing fighting the urge to pass out or slump to the ground. No more daily torment of the agony caused by chronic pain. CHRONIC PAIN I say because I have no other words. No words to generally convey the unknown specificity of what it feels like to be the prisoner of chronic nonbacterial osteomyelitis. CNO. An autoimmune disorder…not a chronic illness. Illness does not properly convey the experience of my disorder as I don’t feel that I was sick. That’s just not a good word choice from my perspective of my own personal disabled experience. My pain was fixed…I was cured! But, was I cured? I still have the disorder. I’m afraid he’s lurking-Osteo. Hiding away, only to come back and surprise me. I suppose that’s why it’s taken me 2 years to feel somewhat happy about this scary grey area of remission. I guess today it just feels a little less scary than a year ago. Maybe that’s just how I have to live. Forgetting a little each day and celebrating each year.

I wasn’t angry. I wasn’t mad. I was just existing. Existing in acceptance. Acceptance of remission. Acceptance of my past. Acceptance of the endless opportunities for the future. I was actually excited. 

I walked down the steps, hugging the plate over my chest with both arms. Mom saw me along the way and asked to read it. I said no, but she took it from me anyway. I just let her. I stood there feeling silly while she read my little letter to the universe. My thought knot. She just handed it back to me and followed me to the kitchen. I said I wanted to smash it alone, but she wouldn’t let me. I guess that’s symbolism too…for our journey. Never letting me choose to be alone. 

I wrapped this plate in a plastic bag, the top sticking out above the blue lines of the snap. A little dome. I imagined a little bald head. Then I placed this plastic encased plate into a garbage bag. 

I walked outside to the stone steps. She wanted to record it, but I said no. Then I held it above my head silently, and threw it hard at the jagged grey block jutting out of the earth. SMASHHHHH. One big, loud crashing. We looked at each other, a bit shocked honestly. 

“Well that was unnerving,” she says to me. 

“Yeah.” 

“Should we go back inside?” She looks very unimpressed. 

“Yes,” I respond, as I pick up the bag. 

“Alyssa, put that down. You’re going to get glass everywhere.” 

“No, I want to glue it back together.”

“Then why did you smash it?” She looks at me like I’m an idiot. 

“Well…it’s, umm, symbolic,” I say almost as a question. 

“That’s stupid.” 

“Well, I’m doing it anyway” I say defiantly, as I swing the bag into my leg, drawing blood. “Ouch!” I scream. 

“See?” She raises her eyebrows at me. “Now throw it out.” She walks back inside. 

“Fine,” I huff. 

Perhaps that’s a better representation of my life. Rolling with the punches. Maybe some of the pieces are still loose too. Didn’t get glued entirely back together. I’m just a modge-podged collage of haphazard shards. That’s pretty cool if you ask me. I can be art.