Happy Easter and Happy April warriors! We hope you are having a great month and hopefully enjoying the beginnings of warmer weather! Last month was National Poetry month in The Unites States and is this month in Canada! Poetry and creative writing is a great way to express inner feelings or reflect outer experiences. For this newsletter issue, we asked you to all submit your poems to us for "Our Healing Words," poetry celebration! We are so excited for this special quarterly segment. Read some of the work from our amazing featured poets below! There will also be a few poets hitting our social media pages throughout May, so be sure to keep an eye out! April is World Autism Awareness Day, Testicular Cancer Awareness Month, IBS Awareness Month, and Minority Health Month! Let's talk about these days of awareness and help start a conversation. This month we have an interview with a published, honorary guest speaker. You can also see what is new in our beloved Chronic Illness in the News segment. Let's get started! |
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Our Healing Words Fight Like A Warrior 2022 Poetry celebration |
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A Matter of Healing “It doesn’t matter.” A hundred people may have it worse
but
should it matter? Be a
rose red.
Soak in the rain. Be a
book open
to the page where it happened. Be a
candle lit.
Burn in the message. You are allowed
to heal the harm. He may say you should
drown.
Drown
out the voice. It doesn’t matter. -Kate Gough, Canadian chronically ill poet. |
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Kate Gough is a Canadian based poet and a member of the online poetry community. Her work modernizes romantic literary sensibilities and explores recovery from trauma and living with chronic illness. She has participated in a community poetry event 'Escapril' three times, releasing poetry every day for a month. She has been published in several online journals, including the Latte Edit and Nightingale and Sparrow, as well as in her local community in Disability Pride Alberta, and in the YYC Portraits of People project. She lives a cozy life with her partner and cat, as she has always dreamed of. Her new poetry book 'Cottage in a Mirror' is a wistful collection of confessional poems about healing from trauma, through means of many vices and virtues. Taking inspiration from so called “tragic heroines”, fairytales, and the human anatomy, she explores themes of lost dreams and perpetual pain all whilst clinging to the romantic ideal of a quiet life. 'Cottage in a Mirror,' is now available for purchase. We had the chance to sit down with Kate and talk about her poetry and vulnerability through words. Kate also reads some of her poems out loud. Watch the interview below! |
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Meet the poets of Fight Like A Warrior's 2022 Poetry Celebration! |
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"I have lived with medical issues linked to a rare syndrome called Thrombocytopenia Absent Radius Syndrome my whole life. Writing has always been one of my favorite creative outlets to get through hard times. This poem is inspired by the beautiful small moments in life that make time seem infinite." |
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The Beauty In Life's Ever-Fleeting Moments The day comes to an end. Harmonious hours of sleep break at dawn. Beautiful flowers wilt away. Iridescent bubbles pop. Ice cream makes its final tumble as it melts and falls to the ground. Balloons lose their will to rise- And some boats eventually run aground. One may cry when they see life pass them by. A secret moment now belonging to the past creates the tears of a lover who wished it would forever last. The ticking of the clock creates the beat of a heart ridden with anxiety- And the tears of the little girl in the black dress press against the box of rest Some might say it’s evil, but we all know that it is true. Special moments of beauty and life are ever-fleeting too. The thing that most seem to forget is that the pain of the past is nothing compared to the joy of the moment. If a flower of crimson stayed whole forever, who would stop to revel in its wonder? If a family picnic filled with laughter were to last for weeks, who would have stopped to listen to grandpa speak? If ice cream stayed whole forever, would the sweetness be the same, or would we simply save it for later? A thing is meant to be held sacred, not worn out. If time stood still, would we become bored, or would we still want more of it after? Time can be seen as both friend and foe- It balances life, yet it contradicts itself If there were too much of it, we would not want more of it because we would not truly appreciate it- And having too little time helps us see what and who we want more time for. |
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Mollie Ripple is a 26-year-old with a Bachelors in Psychology and a Masters in Occupational Therapy. She is passionate about mental health and chronic illness advocacy, as she battles IBS and stage 4 metastatic cancer herself. She finds solace in writing, art, photography and spending time with family. |
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Little Loves Saturday morning Sheets a mess Your big green eyes My flowing dress The sun spills in Lights up your face My dreams came true In this little place All that’s left Are tiny feet Both our worlds In one body meet Dear Mom During months of chaos, sad news and defeat You worked so hard to bring happy to me But of all the things we got to see and do My favorite piece of happy has always been you |
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Julia Taliesin is a passionate storyteller - whether in journalism, marketing, poetry, or music. After experiencing symptoms for years, an acute flare led to an Ulcerative Colitis diagnosis in 2019. Communities like Fight Like a Warrior helped her feel less alone, and she’s honored to share a piece of her disease experience through them. |
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Disease. I don’t think I was ever truly angry until you. Sure, I shook my fist at the patriarchy, but I never hated something in me so much. Why are you here? Why this vessel? Are you a punishment? A reminder? A curse? A gift? Or are you simply an occurrence in an apathetic universe? To me, you are monumental. I have no choice but to live with you – live in spite of you. And yet, they say the only way to live is to accept you. H O W ? |
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Ella Bae is completing her double major undergrad in English and Political Science at Mount Saint Vincent University and is an active member of the Writers Federation of Nova Scotia. She is fluently trilingual with a keen interest in languages, and lives in Halifax, NS with her husband, teenage daughter and two geriatric cats. |
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Self-Evaluationship I have always been that space In between. Never fitting here Nor there. I am the smoke off the blown-out candle, The lingering smell of happy birthdays Before settling down to “The party’s over.” The sharp edges and green bruises were Too tried to live inside and instead, I crept Into the corners of the quiet sweat And solubles seeped through a mattress No longer my own. I am the silence that cloaks the room, Laying like steel wool over all who’ve heard “It’s a girl.” I am the defeated gap Between an A and an A+ Standing, starving Bottomed out from being So hungry. For approval. |
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Marisa is a Health Professions student, passionate about making healthcare more approachable, especially for patients who are “outside the box”. As a disabled individual living with chronic illnesses, including Ehlers Danlos Syndrome (hEDS), Dysautonomia, Gastroparesis, and now an ileostomate, as well as her struggles with mental health and eating disorder recovery, she has been open about her journey. Marisa finds healing through creative outlets such as music, singing, and now poetry. |
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Today, I'm Not Ok Yesterday I did a lot. Today I pay the price. The simple tasks most take for granted, are my Mt. Everest. It seems the more I do, the more I hurt. I lie here with my body heavily pressed against my bed, wanting to get up and out as I did yesterday- while also knowing my energy is precious and limited. I'm told I need to "work on getting stronger," as if I’m not fighting to do so every minute. I'm told to "stay strong" and "keep fighting.” I feel exhausted from the fight. I'm reminded of how strong, brave, and resilient I am, when all I want to do is fall apart. Is it really bravery and strength when you have no other choice? In this moment, I don’t want to be brave. What does bravery or resilience look like anyway? These months of hibernation have not been a vacation. Between the hospital bed and my own, I lie down but never rest. The brave face I wear while forging through the chaos, is energy-sucking. It’s beyond the pain. It's not knowing what the next hour will bring. The constant fluctuation day-to-day. It’s the silent suffering. It's the longing to do what I used to. It's the heavy burden I carry. It's the burden I share with my loved ones. It's knowing I won't wake up tomorrow feeling “all better.” It's all of this and so much more. I don't want to look for the positive in this moment. Sometimes there isn't always a bright side. This too may pass, or it may not. I don't want to be "strong." I don't want to be "brave." I just want to be. I want to wallow for a bit. I want to cry. Maybe these moments of fully embracing and enduring, is what allows me to be resilient. What allows me to keep moving onward amidst the unknown. Amidst the unpredictable nature of living with illness. Of living in an undependable body that both wavers and rides the waves With a mind that often takes the crash. Maybe these moments of release, allowing myself to emotionally cleanse are the bravest and strongest. Maybe this is what resilience looks like. Tears and all. Maybe resilience in this case isn't the overcoming but rather the adjusting and adapting to the ever-changing constant. Not moving on but moving onward. Continuing to move through the beautiful mess of it all. Most days I accept my realities. Today is not one of them. Just for a minute, I want to give up. Is that too much to ask? I'm hurting inside. I hurt. Today, I’m not ok. And that is ok. Tomorrow may be or feel the same, but it is also new and unexpected. And onward I go. |
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My name is Fabiola Amaya. Some of my hobbies include reading, writing, and painting. I will be majoring in social work this fall to continue my work as an advocate for disability rights and hope to one day become a U.S. elected official to create policies for the disabled community! |
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Trapped Four walls closing in, I cannot breathe. Three breaths in and out, I cannot complete. Two years ago, I was diagnosed with anxiety, One mental illness which will cause the death of me. Lungs have one purpose, which is to expand, they cannot seem to do that, even when I command. Heart beats faster than I can stand, all because things didn’t go as I planned. Roof collapses on my head, I count the seconds until I’m dead. Minutes pass by and I realize that instead, the whole situation I misread. It seems everything is fine but mere moments ago, I was trapped in a cage and had nowhere to go. Realization dawns on me and I can see it was all for show, the anxiety, over my mind and body, it took control. |
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Kaylea is a neurodivergent multi artist that likes to express her creativity through poetry, wood burning and much more. She is always trying new ways to make art inspired by nature and life struggles. Recently she has been in the process of publishing her first poetry book. |
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Get better I can’t understand your words mama. Im sorry this is happening to you. Trying to find beauty in a deterioration, is harder than climbing a mountain. I wish to see age marks on you mama. I want to see wrinkles, but i’m not sure i will. I speak, but you don’t know me. You speak, and it feels like i don’t know you. I want to see the real you, again. And i want you to see me MS I feel the tingle in my face. The numbness like a half moon. The stumbles with sobriety. I ignore the possibility. I don’t want to deteriorate. |
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"I’m a 44yr old mother of 3, a brand ambassador & mental health advocate. After over 10yrs of battling ill health, I'm now registered disabled & being cared for full time by my incredible husband but more importantly I'm also a warrior and will continue to face every challenge with a brave heart & open mind." |
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I will try to put into words, everything you mean to me.. your forever in my thoughts, and in all I see.. I hear you in my voice and feel you in my heart.. so I begin to realise that we will never be apart.. I can see you in my kids and memories so very strong.. in my ears are your words of wisdom and I remember you were never wrong.. At night when all is quiet and everyone's asleep.. I sometimes feel an emptiness and I may begin to weep.. Buts it’s then that I remember the most important thing of all.. you never let me go mum, you never let me fall.. So I miss you every day mum, that is very clear.. and love you even more mum with every passing year.. |
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After living with chronic illness for many years, Stacie chose to flip the narrative and now uses her experiences to mentor and lead others. Stacie is an ordinary woman with an extraordinary mindset regarding how to process the challenges and traumas we all face in our human experience. As such, her passions are to coach others, speak to and inspire groups of individuals, and create emotionally transformative art for both children and adults. Ultimately, Stacie seeks to draw an individual inward, reminding one of their innate strength and intuitive magic. |
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Time to Dry Let sadness wash over you like water. Let it flow over, enveloping your body. Sit in your sadness for as long as you feel is necessary. When you’re ready, you emerge from the water. The first satisfying breath reaches your lungs, and you feel a rush of calmness. The water falls away taking much sadness in each drop. Remember, you won’t be dry immediately just as sadness lingers. Give yourself time to dry. |
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World Autism Awareness Day |
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April 2 is World Autism Awareness Day. World Autism Awareness Day this year through the United Nations focused on goals which will help autistic children get the educational resources they require to ensure they receive the education they need. This is called Sustainable Development Goal 4, and it focuses on educational rights for autistic children. Click on the link below for additional information about World Autism Awareness Day and how you can donate and/or be a part of it. | | |
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Warrior Of The Month Nicole |
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Nicole is a medical student studying to work with children with cancer or chronic illnesses. Nicole has Postural Orthostatic Tachycardia Syndrome (POTS) and Ehlers Danlos Syndrome (EDS). Nicole wants to be the doctor who cares for patients after they have been dismissed by other doctors, which she says happens often. Nicole has a small business Potsie Packs Care Package, a business which send care packages to the overlooked ages in healthcare, ages 10-30. |
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Are you a Spoonie Small Business owner? Want to advertise your work in our newsletter? We are looking for chronically ill/disabled small business owners from our community to be interviewed for future newsletter issues! If you are interested, please DM us your contact info on our Instagram or email Megan.Bocchinfuso@fightlikeawarrior.org to be added to our list! |
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IBS, or Irritable Bowel Syndrome is the irritation, inflammation and disruption of the bowel. IBS causes extreme symptoms and discomfort. Though IBS is often stigmatized, it is a very severe illness. This IBS Awareness Month, we encourage everyone to visit the link below to learn more about IBS and find ways to create a conversation! | | |
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Testicular Cancer Awareness Month |
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April is Testicular Cancer Awareness Month. Testicular Cancer is most commonly found in men aged 15 - 44 years. It is encouraged by the Testicular Cancer Awareness Foundation to regularly self-examine yourself. The photo on the left is from their site and is a guideline for self-exams. Please visit the link below for more information and ways to donate and get involved. | | |
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National Minority Health Month |
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April is National Minority Health Month (NMHM)! The FDA’s Office of Minority Health and Health Equity (OMHHE) highlights important issues impacting diverse communities year-round, but National Minority Health Month gives us the opportunity to amplify those efforts. The U.S. Department of Health and Human Services’ (HHS) Office of Minority Health (OMH) has selected Give Your Community a Boost! as this year’s NMHM theme. This year’s theme focuses on the continued importance of COVID-19 vaccination, including boosters, as one of the strongest tools we have to end the COVID-19 pandemic that has disproportionately affected communities of color. This theme supplements the CDC recommendations to prevent COVID-19 transmissions, such as physical distancing, use of well-fitting masks, adequate ventilation, and avoidance of crowded indoor spaces. |
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Chronic Illness in The News |
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Welcome back to our Chronic Illness In The News segment. We are expanding this segment further! If you have an article you came across yourself which you really enjoyed and want to see it in this segment, we want you to share it with us! We want to hear your thoughts and opinions about the articles we post in this segment, and get a discussion going! (Thoughts and opinions can be about an article you came across, or about one you saw here!) This is a great way to connect with people within your community and a chance to have your voice be heard! You can send the articles and thoughts to our Newsletter Coordinator Megan, at megan.bocchinfuso@fightlikeawarrior.org with the subject line "Chronic illness in the news." |
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IBS Awareness Month: Breaking the StigmasMOUNT PLEASANT, S.C., March 2, 2022 /PRNewswire/ -- April is IBS Awareness Month. Up to 45 million people living in the United States suffer from irritable bowel syndrome (IBS). Although IBS is a common condition, often stigmatized and misunderstood, the symptoms can significantly impact the quality of life for many patients. |
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Seven common IBS triggers that aren't foodMost people with irritable bowel syndrome (IBS) have a list of foods that tend to trigger symptoms. What causes IBS to flare up can vary from person to person. Triggers include spicy takeaways, too much wheat, dairy, yeast or FODMAPs (short-chain carbohydrates/sugars recognised as a common culprit in IBS) - resulting in bouts of abdominal cramps, diarrhoea, constipation, bloating and excess gas. |
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Opinion | Covid long haulers are new to the fight for disability rightsLast week, Sen. Tim Kaine, a Democrat from Virginia, announced that almost two years after he contracted Covid-19, he has lingering effects from the illness. The senator, who described having a "24/7" tingling sensation, told The Washington Post on Wednesday, "I tell people it feels like all my nerves have had like five cups of coffee." |
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Have you checked us on on our social media pages? You can find so much more wonderful content that doesn't make it into our newsletter! Click the links below to be directed and be sure to interact, we love hearing from our community! |
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