I started grad school this semester with one class – COMM 502: Presentational Speaking. While it sounds like a total bummer, and I was looking forward to getting it out of the way, my research has surprisingly introduced me to some inspiring chronic illness warriors, like Abi Stevens, who presented her work at a pecha-kucha night in the UK (watch her presentation – Pain and Inspiration – here). I know what you’re thinking – what the heck is a pecha-kucha night? Pecha-kucha (Japanese for chit-chat) is a presentation format created by architects in Tokyo in 2003. The concept is simple: 20 slides, 20 seconds each. A pecha-kucha is a six-minute forty-second casual TED talk presented by anyone about anything.
For my final project in the class, I’m creating my own pecha-kucha presentation. In preparation for the project, I’ve been watching pecha-kucha videos from around the world on the official website. These bite-sized lectures are the perfect way to fill those seven-minute gaps in your day and learn something new, but the endless variety of topics and growing database of presentations can be a bit overwhelming.
If you’re curious about pecha-kucha, or you just have seven minutes to kill, here are a few of my favorite presentations focused on chronic illness, mental health and self-care.
Fighting Mental Illness by Louise Hutt
Louise has infused her presentation with her own photography and opens up about her battle with anxiety and the stigma around mental illness.
My Body and I by Steve Schwartz
Steve explores the connection between body and mind in this thoughtful reflection on life with chronic pain.
Self-Care in Modern Time by Yoo-Jin Kang
Emphasizing the balance between what she refers to as “ancient time” and “modern time,” Yoo-Jin gives tips on living more mindfully and embracing self-care as a daily practice.
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I recently discovered the art of Abi Stevens and was immediately intrigued by her use of color, references to mythology and especially her portrayal of chronic illness through digital illustrations. As someone who’s lived with migraine for many years, Abi’s artwork resonates with me not only because of its unique representation of migraine symptoms, but because of the empowerment and determination behind every illustration.
Q: What inspired you to create your Chronic Warrior and Migraine Warrior pins? A: I started making illustrations about migraine and connecting with other spoonies online, and I wanted to create something empowering for myself and others: a kind of visual symbol of pride for those of us with invisible illnesses and anyone else who wants it.
This illustration for Popshot magazine is one of my recent works which really ties together the various elements of my style: the color palette, the sketchy line-like shading of the figure, the stylized border and shape elements, and a heavy helping of symbolism! Q: One of your illustrations that really resonated with me is Transient Aphasia. It's something I've struggled with in the past, and it's not talked about often. Can you tell me how you came up with the idea for this illustration?
Q: How has your art helped you cope with chronic pain and illness? A: It's been a cathartic exercise for me. As medication started to improve my condition and I could draw again, I started making illustrations more personal to me as a way of processing what was happening to me. Sharing my work online connected me with others who resonated with the images, and interacting with other spoonies has made me feel less isolated and more determined to find healthy ways to deal with my condition.
Having just Kickstarter-funded these enamel pins, my next step is a fundraising exhibition night this Saturday, September 14th, in my hometown of Cambridge. I'll be raising money for the National Migraine Centre. To see more of Abi's artwork and order your own Warrior pins, visit her website and follow Abi on Instagram!
In less than one week, I'll be embarking on a new adventure in the form of graduate school at the University of Findlay. As an undergrad, I never really considered continuing my education after graduation. There was even a time that earning my bachelor's seemed like a stretch, as I struggled to find an effective treatment for multiple chronic illnesses, choose a major and navigate a transfer from one school to another. The Master of Arts in Professional Communication (MAPC) program at UF was established in recent years and was designed with working professionals in mind. In other words, it's more spoonie-friendly than many other graduate programs, offering flexibility and the option to take all online courses. The coursework is also designed to incorporate current work projects, instead of doubling your workload. These are some of the reasons I chose to enroll in the MAPC program, which I hope will help me grow and improve my own business, Right Brain Creative Content, as well as the blog!
But I'll be doing things a little different this time around. In my post-grad years, I've realized that I actually enjoy learning. Who would've known that reading -- and even studying -- could be enjoyable? Maybe that's just what happens when you finally discover what you're truly passionate about. So I will be focusing on making the most of my graduate experience by setting priorities from the very beginning. Here are a few things I'll be doing differently: 1. I will make self-care a priority.I'm not 21 anymore. My body reminds me of this every chance it gets. I know that to be successful at this point in my life, I can't stay out until 3 a.m. and sleep through class in the morning. I'll be making time in my schedule for rest and exercise, and I'll check in with my body regularly to make sure I'm on the right track. 2. I will not take my relationships with professors and fellow students for granted.One of the biggest benefits of being a student is the unique community environment. This is one of the only places you'll ever find yourself surrounded by people who know more than you and are willing -- and even happy -- to not only share what they know but to help you apply that knowledge to your own work. 3. I will actually read the course material.I know, I know -- what a revolutionary concept! It's amazing what you can pick up just from actually ingesting the information you're provided with. 4. I will set deadlines for myself and actually stick to them.I've learned that deadlines are even more important in the real world than they were in school. When you miss a deadline on a work project, you don't get paid! I've learned to be more intentional with my schedule, and I'll be applying that concept to my graduate coursework. 5. I will take advantage of every student discount I can find!You don't realize how many perks come along with being a student until you aren't one anymore. Whether it's 10% off my lunch or the opportunity to attend an industry conference for half price, every penny helps me pay my tuition. 6. I won't be afraid to ask for accommodations if and when I need them.In my previous career, I was often torn about whether or not to request accommodations that would allow me to effectively perform my job. I knew that I needed them, but I also knew that making the request (while totally reasonable) would add fuel to my abusive coworker's fire. Luckily, I have a renewed sense of self-worth since leaving that job, and I've learned that asking for accommodations is nothing to be ashamed of. What tips/tricks have you discovered for surviving school with chronic illness? Tell me in the comments!
This is a guest post contributed by a reader who wishes to remain anonymous. Names have been changed to protect identities. I'm honored to share this story and provide a platform for brave people to speak out about their struggles with chronic illness, disability rights and healthcare in America. If you'd like to share your story, please contact me here. Two pink lines. All I had ever wanted was to be a wife and a stay-at-home mom, and there I was staring at two pink lines. I immediately started screaming and sobbing uncontrollably while my fiance, Randy, rubbed my back in the tiny bathroom of our tiny mobile home. We hadn't been together long enough to have a child together. This was no environment to raise a child in. After years of teenage promiscuity with no pregnancies, I was convinced I wasn't able to have children. But here I was, staring at two pink lines encased in cheap plastic. I grew up in a stable, loving home with a father who worked full-time and a mother who stayed home with three children. My parents were (and still are) very much in love. I have two siblings who are also stable and successful. We were raised with Christian morals and taught to always do our best personally, academically and professionally. While these doctrines seemingly came easy to my siblings, I struggled. Mental illness has been a battle for me as long as I can remember, and with it came looking for love and acceptance wherever I could get my hands on it. When I first met Randy, I wasn't completely infatuated like I had been with men previously. He grew on me slowly and then suddenly, like how weeds overtake a lawn after a summer storm. We quickly moved in together, and I felt like the relationship was going well. Shortly after that, the shift happened. He was angry and bitter more frequently. He would engage in shouting matches with me, eventually backing me against walls while he screamed at me so closely that I could feel the heat of his breath on my face. Along with the yelling came the taunts of, "You're crazy. No one wants to be with a crazy person. You better stay with me because I'm the only one who would ever love you." And so I stayed. A few months later, as we were standing in the tiny bathroom watching the test reveal its answer, Randy had the biggest smile. He was thrilled that he was going to be a father. I told him that I wasn't sure we could raise a child together, and once again, he assured me that I was crazy. A doctor's visit confirmed the pregnancy, and I began taking prenatal vitamins. Randy's mother took me wedding dress shopping. She bragged to the store attendants about how she was going to be a grandmother and told them that we were moving the wedding date up sooner to not have a baby out of wedlock. I sat in the dressing room and silently sobbed. A week later, I called my mom to tell her I had decided to have an abortion. It was very secretive; my parents didn't want me to be exposed to cruel judgements because of my decision. My mom and I drove to a different state to have it done and even paid in cash so it wouldn't be recorded with my insurance company. The office was plain with a stained carpet, and a comedy movie played on the television in the waiting room. The staff called my name and walked me to the back, alone. After I had done research on different abortion options, I had decided to take the medication option rather than have the surgical procedure because it seemed less invasive and traumatic. The nurse performed an ultrasound and pronounced that I was seven weeks along in the pregnancy. She asked if I wanted to see the ultrasound. I declined. She then informed me that I would take the medication in the office, then I would need to return in three weeks to "make sure it worked." I broke into a sweat. Three weeks is a long time to not know if something this major "worked." I decided then to have the surgical procedure. I did not want to subject myself to three weeks of paranoia wondering if I'd had a successful abortion.
I somewhat remember him talking me through the procedure and letting me know when something would be physically uncomfortable. Mostly, I remember the suction sound of the machine. The sound of that machine wouldn't allow me to use my vacuum cleaner at home for over a month without enduring a full-blown panic attack. Once I was home, my mental illness hit an all-time low. I felt completely isolated and alone. I was told to not think about my experience - that if I didn't think about it or talk about it, what happened would go away. It didn't go away. On top of this, the abuse at home got worse. Randy was a law enforcement officer and would use his tools as "toys." One of his favorite games was to pull out his taser, point the aiming laser at some part of my body and watch me panic. Randy would frequently bring up the abortion during arguments as a way to further tear me down mentally and emotionally. One spring Sunday after church, I told him I was upset because a baby was crying during the service. He replied, "You're just upset because they have a baby and you killed ours." After more than a year of abuse, I finally found my strength and left Randy. I made a great friend who treated me with so much kindness that it left me confused as to why I was going to marry someone who treated me so poorly. Since leaving Randy, I have gone to abortion recovery retreats and years of therapy to try to find peace. Recovery is an ongoing process, and while I will always mourn the loss of my child, I remain steadfast in that I made the best decision I could have with what information I had at that time. I am still struggling with my decision; my due date is a hard day every year, and Mother's Day can be downright excruciating. However, I know that had I not terminated this pregnancy, it would have been detrimental to that child to grow up and see parents in a toxic and abusive relationship. It would have been detrimental to my mental health. Having an abortion isn't as simple as walking into McDonald's and ordering a number nine, and is rarely used as a form of birth control like so many people, including legislators, would like you to think. There are so many factors that go into making the decision to terminate a pregnancy - it is truly a monumental decision that affects the woman making the decision before, during and after the procedure. Maybe if more women were met with compassion rather than hatred over this topic, we could better support each other, tell our stories and open peoples' eyes to see that we are not monsters for choosing to have an abortion. Maybe we could find more common ground in our legislatures to see that not everything is as cut and dry as they make it appear to be. Maybe, just maybe, we could offer others, and ourselves, a chance to heal.
Recent news of changing policies in regards to surveillance of people receiving disability benefits has caused an uproar in the disability community, as it should. If you're not familiar with the proposed changes, here's the (extremely) short version: The Trump administration is proposing that the social media accounts of people receiving social security disability benefits be monitored to determine whether or not those individuals qualify for benefits and to crack down on fraud. The problem with this strategy is that policymakers are working under the assumption that a person's level of disability can be determined by the content they share online. If you have a disability, you're probably already rolling your eyes at the absurdity of this. If you're not disabled, and you're wondering what the problem with this assumption is, here are five reasons you should be outraged by this policy:
2. Every individual's experience with disability is different.Disability and chronic illness affect everyone differently. Symptoms and limitations vary, not just between people, but from day to day. Just because someone can perform a physical activity doesn't mean someone else with the same condition can perform that activity, or even that they'll be able to do that same activity tomorrow. Even for someone who's lived with a disability for years, it can often be unpredictable. It's not always possible to know what activities will be off-limits ahead of time or when symptoms may flare up, making simple tasks suddenly impossible. This doesn't mean they're "faking" it. It's just the nature of disability. 3. You can say goodbye to advocacy and outreach.The social stigma surrounding people with disabilities, especially invisible ones, has been slow to improve. It's literally taken our culture centuries to get to the point where we actually view people with disabilities as human beings with inherent value (and many people still don't!). We still have a long way to go. The internet, and specifically social media, has given a voice to advocates and opened a new world of possibilities for people with disabilities who were once socially isolated.
4. Social media isn't an accurate representation of our lives.By now, we all know that social media is simply a "highlight reel" of the most photogenic moments in our lives. According to this article from Huffpost, women spend 16 minutes perfecting each selfie they post, which adds up to five hours a week on average. The last thing we women are doing is posting selfies with messy hair and bags under our eyes, even if that's what we look like 95% of the time. And that photo of your cousin smiling at her best friend's birthday party? (She looks like she's having a great time!) What you won't see are photos of the next three days that she spent in bed, recovering from the enormous effort it took to spend an hour or two with the people she loves, while smiling through the pain. If that's not enough to convince you that social media isn't a reliable resource, another study found that almost a quarter of everything you see on social media is either faked or exaggerated. It's simply not a good source of accurate information. 5. The most likely outcome of this policy will be cutting benefits for people who desperately need them to survive.The incidence of fraud among Social Security disability beneficiaries is already at a staggeringly low fraction of 1%. Despite myths that disability fraud is a common occurrence, it's actually far more common to be denied disability benefits - even when you really do have a severe disability. The most likely outcome of the new surveillance policy will be the termination of benefits for people who desperately need them. To learn more about the policy and its dangerous consequences, check out these articles: A Trump Proposal Could Make Selfies Dangerous for Disabled People How a Trump Proposal Could Reduce 'Happy' Disabled People |
My name is Maggie Morehart, and I'm the creator of Incurable. Learn more.
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