12/4/2016 0 Comments Advent Writing Prompts: RenewalI got this lovely Advent Calendar from Yankee Candle; a new votive each day for 24 days. I've set up a little altar for it and found some writing prompts. (Here) Each day I plan to sit next to the candle, put on some music, and write for 20 minutes. I'll post my writings here with (minimal) editing. Enjoy!12/3/2016 (okay, I didn't really write it until 12/4...)
I am struggling with this prompt. I don't want to write about the past year; I've written so much about it already and I'm certain I'll write more. I am continually renewed as I learn my life with Narcolepsy, so I want to write something else. But every thing I think of reminds me of someone I'm not ready to write about. I picture myself swimming--pushing to complete the Island Swim test, getting up early mornings to train for Lifeguard Certification. Swimming was renewal for me. It taught me how powerful I could be, how to set and achieve goals, how to love exercise again after I'd stopped dancing. But swimmming was also a way to impress a girl, secure a job, barter for adventure. I picture myself crying--a good cleansing cry that dams up over time. Sitting at Taylor's house as she stroked my hair, silent tears running down my cheeks, accepting the bittersweet end of a romance. Breaking down in my Brandi's office as I realized that I was coming up short, despite giving my all. Crying that hollows me out, shakes my core, and leaves me ready to build again. The truth is, the part of me that longs most for renewal has not yet found it. Today I tried to write the story again, for the umpteenth time, but I still can't. I'm not ready to give it an ending, not even an ellipsis.
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I got this lovely Advent Calendar from Yankee Candle; a new votive each day for 24 days. I've set up a little altar for it and found some writing prompts. (Here) Each day I plan to sit next to the candle, put on some music, and write for 20 minutes. I'll post my writings here with (minimal) editing. Enjoy!12/2/2016
I wake up startled yet groggy, realizing I'd fallen asleep after meditating. Well, I guess I needed it. I mutter to myself although I don't believe the words. I check the time --12:30--and notice the oversized mug of tea sitting on the table next to me. I take a sip: cold and bitter and the creamer tastes off. I can still detect the Cocoa Spice flavor, so I try a few more sips to see if it tastes better....nope. Just gross. Time to start the day over, I suppose. I'd made some anxiety lists earlier, including a To Do for the day, Just as I am reaching to look at it, Toby climbs into my lap. He promptly curls up and begins snoring. I know it isn't a very good excuse to stay sitting, but his presence is so soothing. I rationalize sitting with him for a bit. I wanted to work on the first advent writing prompt anyway. I put my headphones on and write. It feels good to write, I've been needing some creative time. When I don't take time to create, thoughts get log jammed in my brain. It becomes harder to process and focus. Lordisa knows I have enough trouble with those on a good day. It is comforting to be so in tune with my being, though at the same time it is frustrating. Seeing patterns can help to mediate wellness, but can also make things feel coldly logical. Ignorance is bliss. Or whatever. 12/3/2016 0 Comments Advent Writing Prompts: PeaceI got this lovely Advent Calendar from Yankee Candle; a new votive each day for 24 days. I've set up a little altar for it and found some writing prompts. (Here) Each day I plan to sit next to the candle, put on some music, and write for 20 minutes. I'll post my writings here with (minimal) editing. Enjoy!12/1/2016 Dear Explosions in the Sky, Thank you for your music. It has been the quiet hero in my life for the past decade. I recently went to a concert of yours in Chicago. It was really illuminating. I never really talked about what your music meant to me before then, because it was a private love affair. I listen to you when I need to look inward--when I need to retreat from the crazy, wild world. Your music is my anti-anxiety, my encouragement, my determination. A deeply personal, solitary experience. I'll admit, I haven't followed you as a band in the way I have other favorite artists--before I saw you perform live I couldn't have picked you out of a crowd. But I can identify your music anywhere; there truly is no other band like you. Seeing you live made me realize how much your music is in my bones. It has become a building block of my very being. It has saved my life. What struck me about your performance was the LOVE that radiated from your tage. I had the sense that you intrinsically new the power of your music, the healing it brings to those listening. And the pure joy in your bodies as you played brought the music to another level for me. When I listen to it now, rather than feeling solitary I feel like I am plugging in to a network of support. A spiritual network of other people who understand that some things can't be expressed in words. That we are never alone because we are all part of the same universe, connected by the atoms that make up our bodies. That our similarities are stronger than our differences. I can't thank you enought for that gift. Love, Kerida 10/21/2016 0 Comments Introducing: Spoonie Spotlight!I love listening to interviews. Even when I know nothing about the person being interviewed or have little interest in their show/book/music/etc, I get lost in hearing about a person's life. I love hearing how people presents themselves and their stories. When I started this blog, I thought that I'd probably include interviews eventually. This series has been bopping around in my head for awhile. I was inspired by my partner, Sean, when we were talking about a milestone in his sobriety. I asked if I could brag about him on Facebook, because I love him and I think he's great and I am proud of him, but he shrugged me off. "I won't stop you if you absolutely must, but really there are other people who deserve your praise more." I patently disagree about the 'more' part, but it made me think about who else in my life inspires me, who else I'd want to brag about. The first person I thought of is my first interviewee. BG and I worked together at Camp Alice Chester, but I began to really connect with her through her posts on Facebook about her struggle with Ulcerative Colitis. Her warmth, enthusiasm, and honesty regarding some very painful and personal topics helped me a lot at the beginning of my struggle with Narcolepsy. She inspires me because she speaks out. She is up front about the parts that suck without being fatalistic. And she loves with an admirable ferocity; her friends, her family, her work, and her pop culture heroes. Thank you, BG, for lighting my way into the Spoonie Life. And for taking the time to answer my questions. BG v. Ulcerative ColitisTo start, say a bit about yourself and what makes you a Spoonie
I had a considerably healthy childhood. I was born premature, but it didn't have any lasting health effects. Until I turned 20. I had some health issues, and I went to the doctor. I thought It was handled. But, two months later I landed in the ER. A CT scan and colonoscopy was done, a biopsy was taken, and it turns out I suffer from a mild case of Ulcerative Colitis. A year later, I was in ER again, and my diagnosis went from mild to severe. More medications were added, more treatment options. We met at Girl Scout camp, which was really foundational for me. How did your experience there shape you? There is no chance in Hell I would who I am if I didn't go to camp. Camp gave me my best friends, and gave me the career path I am on today. It is we're my work and play meet, and where I am 100% myself. I can talk to anyone about anything. Camp is a safe space, and it will always be there for anyone who needs it. Did your CAC experience help you develop skills to cope with chronic conditions? Yes. I met the majority of my support system at camp. The people I call when i’m sick, the people who send me get well soon cards and made sure I was ok. Often a huge battle for people with chronic conditions is getting diagnosed. Tell me about your journey to diagnosis. I went to the doctor for the run of the mill, small issue. I was given some advice, which I followed, and then I thought it would go away. I didn't go back to the doctor. I was nervous and scared and blamed myself. I decided I needed help when I went to the bathroom 4 times in one night, and (gross alert) it was all blood. I called my parents at 4am and I got admitted at 5:30 am. They had a lot of theories, including cancer, and I took multiple tests. I got the call the next day, after I went home and puked 3 times, that I had Ulcerative Colitis, pan-colon, genetic. Meaning my colon is attacked by my immune system, the colon is covered in ulcers on the inside and results in pain, and many other joys. Arthritis was a major issue until I was given a steroid. Thankfully, my joint swelling has gone down. Treatments are sometimes as disruptive as primary symptoms. What medical treatments do you/have you used? Do they affect your daily life? I am on a strictly oral treatment. I take 8 pills every morning and one at night, and that is after my number of prescriptions have gone down. I started losing hair from my immune system suppressant, and I started taking folic acid. All of my meds have made me gain weight, making me even more self-conscience about this whole thing. What are some lifestyle habits you've developed to cope with or diminish symptoms? My UC didn't let me eat many healthy items for the first year of treatment. I had white bread, 1 cup of peanut butter. Low fiber diet- awful. I have to be careful with my physical stress, too much, and I could have another flare. I have to watch what I do, I get fatigued very fast. As the day goes on, I get more and more tired. What can/do your friends and family do to support you? How do you communicate with them about your needs? I ask people not to apologize when they learn about my diagnosis. I don't feel sorry for myself, so they shouldn't either. Once I started to fully understand what my UC meant, I was upfront about what it meant. I needed people to know. I can't pretend i’m not sick for the sake of someone’s comfort. The internet was a huge help for me when I was first learning about Narcolepsy. What resources - online or otherwise- do you find helpful? Yes! Lots of forums about UC are on Facebook, and it is so great to see people and talk about our struggles together. What are some stories (books, movies, etc) that inspire you? It’s Kind of a Funny Story- Ned Vizzini Silver Linings Playbook- Matthew Quick Spider-Man - you take what you are given, and you use it to make the world a better place. Who are some real life heroes of yours? Temple Grandin Ned Vizzini Vincent Van Gogh Amy Pohler Anything else you'd like to share? Six months after my first hospital stay, I was diagnosed with depression. It hurt so much, not just physically. It ruined my life, until I stopped letting it. The more I talked about, the more I felt like I could start to control it. I cried whenever I told someone, because it was a secret, it was shameful. I wasn't healthy. But, as I learned to live with this, I felt better (mentally and physically). Stress is a major trigger for UC, and I was starting to control and manage my anxiety. It takes time to be yourself after bad things happen. It doesn't matter how good or bad of a person you are. No one deserves this. You become who you want to be, and you work with what you have. 10/4/2016 2 Comments Reclaiming my SelfIf you follow me on Facebook, you have probably figured out that I am currently in rehearsals for a musical. The show itself is going to be really good--the music is catchy, the cast is phenomenal, the plot is simple yet moving. But the best part of this exeprience is I feel myself evolving with the show--reclaiming another part of myself that has lay dormant. Taking pride once again in my body and mind, all the amazing things I can do. And working as part of a community, growing together in a very tangible way.
Coasting on a post rehearsal high, I realized the pattern of Self recovery that this hiatus from my career has allowed. I can picture my islands of identity (a la Inside Out) coming back online. Each time one lights up, I realize how much I've missed it: Camp Island, Community Island, Optimist Island, Dancer Island, Compassion Island. All of the things that make me a great friend, daughter, and Physical Therapist. When I am not feeding those parts of myself, I cannot sustainably perform my work. When I was working full time, I physically and mentally could not manage this important self care. This is why I fell apart. This is why I am "disabled". Managing my Narcolepsy means having a whole second set of self cares, which rarely overlap and occasionally conflict with Kerida's self care. Unfortunately, I don't have any more time in my day, in fact I often have less, than before. Maybe as I continue to reclaim myself and prioritize things that fuel me I will be able to work full time and remain a healthy, sane person. The progress is slow and the obstacles are many, but hope is beginning to blossom. 8/11/2016 1 Comment Courage, Confidence, and CharacterThe first time I set foot on the grounds of Camp Alice Chester, it was to volunteer for a weekend event. I was already hired to work there for the summer, but I didn't know anyone other than the director, who I'd met briefly for an interview. I arrived, after a 45 minutes car ride with another volunteer I'd just met, and was assigned to run the craft station. Alone. I wasn't daunted until the first group of Daisies walked in. I had one demo craft, piles of supplies, and no idea what I was doing. I survived that first group, and every girl left with a paper plate fish. For the second group I rallied, formatted a plan, and tried again. By the last group of the morning I was running a fairly smooth session and smiling, but I was rather astonished by what I'd been thrown into. The camp director and I would later refer to this as the trial by fire, but it gave me confidence to think on my feet, remain outwardly calm, and control of room of chaos. It was an introduction to the skills I would develop over that summer and build upon for the next several years. I cannot over state the importance working that camp had on my development as a person, an employee, a friend, a mentor, a teacher, a student. I pushed myself physically, mentally, and emotionally that first summer. By the end, I was so worn out I thought I'd never go back. But after a few weeks back at school, talking to my friends about the summer I'd had, I realized how much I had gained from the experience. So I went back the next two summers, parts of the two summers after that, and for another full summer after I finished grad school. Each year brought new challenges, new lessons, new triumphs. I wouldn't take back a second of the time I spent working there. Those stories could fill a book, but for this little blog post I am going to focus on my most recent experience: not at my home camp, but volunteering for a day camp in the same council.
At the bridal shower for a dear friend from Alice Chester, it came up that the upcoming day camp which her mother helped plan was in need of more adult volunteers. Part of my brain is always looking for ways to be at girl scout camp, so I offered to help out. By the end of the party it was agreed that I would stay at her house and ride with her each day, and I was signed up for "whatever help they needed." This turned out to be leader of a unit of girls, which I didn't find out until the morning I arrived. Which maybe was for the best, because I was already nervous going into the week, It was my first full time responsibility since I'd stopped working. Summers at camp felt like part of another life: life before Narcolepsy. But I had a ride, a place to stay, and a ton of free time so I told my nerves to shut up and went anyway. |
AuthorMy name is Kerida. I'm a midwestern gal working to promote peace, practice Love, and never stop learning. In January 2015, 4 years into my career as a Physical Therapist, I was diagnosed with Narcolepsy. This blog is about my journey to maintain my sense of self while accepting my new reality. Archives
December 2016
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