Friday, August 12, 2016

The Cat & the Girl

     I'm just going to come right out and admit it - even though I was climbing mountains two weeks ago, the past two or three days have been awful. On the plane ride back from Hawaii my knees were swollen and extremely painful, and I felt nauseous and exhausted. Vomiting on plane rides happens disturbingly often to me, and yet it does not feel like motion sickness so much as the untimely emergence of a chronic flu-like feeling.

     Yesterday was some better. I felt terrible in the morning, but I was eager to see my friend Faith and optimistic about my pain levels, so we went on a couple of short adventures to a craft store and to Chipotle before resting at home for a bit. Thankfully, Faith helped me with my wheelchair in the craft store, so I could contemplate the size of canvases and the bright colors of acrylic paints instead of the size and shade of my joints. I am always so hesitant and embarrassed to use the wheelchair; the night before I texted Faith and asked if my using it would freak her out, a reflection of my paranoia rather than my rock-solid trust in her. But all in all using the wheelchair was a good experience. I wasn't hurting so badly and no one stared at me. The cashier even directed her questions at both Faith and I. Typically if I am using the wheelchair the questions are only asked toward my more physically capable companions.

    After using the wheelchair in the morning my knees were feeling significantly better by the afternoon (in this case, significantly better was still extremely painful, but you have to take what you can get when you can get it). I could tell that much of the fluid was gone, and while my wrists and finger joints were in an excruciating amount of pain I felt much more like myself being able to maneuver around on my own. Of course, it doesn't help that this flare is coinciding with the Summer Olympics. As I watch athletes joyfully compete and push their bodies to the ultimate limit, I wonder why the limit for my own body seems to be crawling under a blanket and carefully finding a food that my stomach can hold down.

    Unfortunately, it seems that for my pitiful joints all (relatively) good things must come to an end. Last night was met with more nausea and more knee pain. My attempts to sleep were fruitless; I was jet-lagged and unable to find a comfortable position for my puffy knees. Fatigue slammed into me mercilessly, like a towering, repetitive wave, but I was not even close to falling asleep. So I found myself trying to make a college packing list, reading articles about the Olympics, and, quite frankly, feeling sorry for myself and wondering how I will ever be capable of accomplishing all that I am striving for in the midst of so much relentless suffering.

     This is when my smallest pet, a petite black cat named Brooke with a quiet and sweet disposition, stepped up to the job. She softly meowed before silently jumping up onto my bed and beginning the process of nestling into the crevices of my joints, her favorite place on any human. I welcomed her presence, feeling alone, and gently pet her head after she laid near my hip.

     It was only when she decided to reposition that an issue arose. She declared the most comfortable spot on my body to be the small space between my awkwardly bent knees, and began making herself a home. Of course, this caused excruciating pain on my end, the kind that made my head spin a bit and tears burst out of my eyes, and I instinctively and immediately tossed her off of me and onto the end of the mattress where my small frame does not stretch. Brooke understandably lost all of her trust in me and scattered off the bed, running to climb through the cat door and escape my cruelty (disclaimer: I didn't physically hurt her, but it certainly seemed like I broke our bond).

    This brief episode completely freaked me out. Part of the backstory to this is that while we were in Hawaii, our dog brushed right up against death and had to have emergency surgery. She is still in recovery, but I have never felt so relieved as I did when we arrived home and she greeted us with her usual skate around the hardwood floor and excited mouth-breathing. Needless to say, I am currently feeling very grateful for the pets in my life and for the unconditional love they demonstrate every day.

    I felt absolutely horrible about lashing out against Brooke. I sobbed, regarding myself as no greater than a parasite, receiving love and returning it as pain and regret. How could I dismiss such a tiny, precious creature who has literally made no mistake in her entire life? How could I let this disease turn me into a monster?

    The truth is, I'm not a monster. I'm just a 17-year-old girl experiencing a ridiculously abnormal amount of pain, trying desperately to protect myself from the damage inflicted by walking and chewing and cats.

    I considered myself unforgivable for sending Brooke away when all she wanted was a warm place of affection to retreat to late at night. And isn't it so much more than that? Doesn't it seem like this is what I am always prone to doing when the pain becomes severe? People draw close to me in an attempt to hold my head above the raging waters, to ensure that I am able to gasp for air, but their hold hurts and so I abruptly swim away, allowing myself to drown and scarring friendships in the process. It seems as though those who love me the most, even down to a beloved little cat, suffer the greatest consequences of my pain as well. It doesn't seem fair.

     I turned to my side and stared at my window, illuminated from the street light and transformed into a pale yellow by my blinds, as hot tears slid down my face, dripping endlessly from my eye to my nose to the worn purple sheets of my bed. I heard the smallest, daintiest scratch and my door, followed by the most delicate meow you can imagine. I raised a swollen arm and leaned uncomfortably toward the door, the increased motion exacerbating my pain and causing even more tears, and slammed my flat, immobile hand down on the handle just enough to crack it open. The stream of artificial yellow light from the hallway pierced my head upon its greeting, but as my eyes made their way to the bottom of the door I saw two gorgeous green eyes meeting mine, asking for permission to return.

Brooke snuggling near my painful wrist a few
years ago, being ever so gentle and sweet.
    Upon seeing Brooke, I maneuvered my aching bones back into my bed and continued to cry. There I was, considering myself unforgivable, feeling as guilty as you might expect a mass-murderer to, wondering why this disease was making me such a bitter human being, and my sweet cat forgave me in less than five minutes. "I'm sorry," I pleaded, knowing full well that she couldn't understand, "I wasn't trying to be mean. I was hurting. I am hurting." Instead of reprimanding me for my insensitivity or responding with well-deserved scratches or a hiss, she cuddled right up in the gentle curve of my stomach, created by the arching of my back, and fell asleep. My apology had no meaning to her, because she never thought to attribute my harshness to a flaw of character. Instead, she recognized that I must be in pain and decided to love me more rather than to shun me, even though the pain caused me to shun her. My meanness scared her away and yet she still drew closer to me, devoid of fear and full of understanding.

    Even on the most unbearable of nights, I always find myself experiencing grace, forgiveness, and love.

Saturday, August 6, 2016

Climbing (Literal) Mountains

       Last Saturday I climbed a mountain.

At a Diamond Head lookout, reppin' the Green Wave.
        Even though I was flaring the day before we were scheduled to make the hike, I was determined to go. The last time we were in O'ahu, my sister and my mom climbed Diamond Head without me - I was simply too sick. While I had a nice time with my dad while they were hiking, I was determined to climb it the next time we found ourselves in Hawaii, and so that is exactly what I did.

      I was doing pretty well for the first little stretch, which mainly involves weaving through rocky, inclined pathways and remembering to slow down and enjoy the view every once in awhile. I was on the move and excited about it. I felt pain in my knees but trudged on, thinking that if I paused or took a break it would only worsen the pain. Our steady pace invigorated me, and it isn't a long climb (only .8 miles up), so I was prematurely feeling on top of the mountain world.

    Unfortunately, my joints were not similarly enthused about the trip. I made it up the first set of stairs but was in an immense amount of pain. I have been trying all day to think of a way to describe it. The pain is not sharp, but by no means is it dull. It is mentally overwhelming and makes me want to self-amputate my legs, but it is also eerily familiar.

This sea turtle wasn't part of the hike, but it was
pretty cute so I thought it deserved a spot here.
     After the staircase, when we were walking up a steep pathway in a dark tunnel, the pain became way too much, and I ended up having to take a break and lean over a railing. Stop reading here if you're prone to queasiness, but I threw up twice before being able to keep moving. Sometimes when the joint pain gets that bad, the stomach just has to follow. "I'm going to get to the top," I assured my ever-patient mother, who waited with me. There was no way I was climbing 75% of a mountain and sending myself into a flare complete with nausea without being able to say that I climbed the whole thing. No. Way. With fiery knees and an equally fiery heart, I trekked up to the top after a few more short breaks. My broken body made it all the way to the peak look-out.

     As I looked out over Honolulu, for the first time in a long time, I felt truly and unreservedly proud of myself.

     These moments of pride and self-worth have been much harder to come by since I was diagnosed with arthritis. Even opening a peanut butter jar feels like way more than I can handle sometimes, so I do not exactly applaud myself for making it up the stairs or walking to class by myself. I'm not advocating for this style of thinking or attitude towards self-value, but I often feel as though anything I do decently is cancelled out by all of the help I need. Of course I make good grades in calculus, I once thought after someone complimented a test grade of mine, otherwise what would I be here for? I needed help walking to first period and I'm a difficult student for my teachers. I'm not great at being a cheerleader for myself, and although this will not come as a surprise to most people who know me, it is never exactly something I have been open about, and it is also never something that I have felt any of my healthy friends have understood.

     In a way, constantly beating myself up is just another mountain I am trying to climb. This past week has included joint pain, middle-of-the-night sickness, and 3 a.m. phone calls with nurses. It has included shots and inhalers and Hawaiian-style pharmacies. All of these things have certainly felt like mountains. While I am proud of myself for sticking with the hike even when it got hard and for accomplishing my goal despite my knee and hip pain, realistically I know that the literal mountains are the least important ones. I would rather be a wonderful friend or caring student or empathic listener than reach a physical summit. Nevertheless, reaching the top of the actual, literal mountain was a monumental accomplishment for me and a timely reminder that I always have been and always will be stronger than juvenile arthritis.

    There are and will be many other mountains, but they don't make the one I conquered on Saturday any less significant. My name is Rachel, I have arthritis, and I climb mountains.