29 minute read
THE LOOK
SNEAKERS!
BY HEATHER BAVER LAND ON CLOUDS.
Nothing puts a spring into your step like sneakers. Since the original Keds debuted in 1892, sneakers continue to evolve. Beyond their stylish, colorful exteriors, these shoes include the latest technology to keep you moving. Check out these selections to get outdoors, have fun and feel light on your feet.
Light and airy, the Cloudflyer includes wider cushioning elements to support all runners — from beginners to seasoned experts. Cloud foam ensures a soft landing and Speedboard® technology releases energy to propel you forward as you take off with each stride. On Cloudflyer, $160, available for women and men, Fleet Feet West Reading
GAME ON.
Step on the court and practice your serve. This three-layer design showcases durability and comfort. Asymmetrical lacing hugs your feet as you move side to side. Lighter than ever, these tennis shoes will get you to the ball with speed. Nike Air Zoom Vapor Pro, $120, available for men, Fromuth
RETRO REMIX.
Go for a stroll down memory lane. This sunny shoe is a modern twist on classic 80s styling. Golden orange suede and white mesh contrast with a neon orange swoosh. Nike’s iconic waffle outsole offers plenty of traction everywhere you go. Nike Dbreak, $99.99, available for women, Dick’s Sporting Goods
SO-SOFT CUSHIONING.
Move forward with comfort. Soft and stable, the Synchron is ideal for daily training. Karhu’s specialized Fulcrum provides energy and increased cushioning no matter how far or fast you’re going. Enjoy a smoother ride with every run or long walk. Karhu Synchron 2021, $160, available for women and men, Fleet Feet West Reading Join the family for a game of tennis. These mesh sneakers will keep kids cool and fast on their feet. Brilliant orange and blue add a bright pop of color that looks great everywhere. A durable outsole provides excellent traction. adidas Ubersonic 4 k Tennis Shoes, $50, available for kids, Fromuth
ROAD RUNNER.
Pick up the pace on your run. A sleek profile and black-and-white gradient design highlights this firm, yet flexible, sneaker. This updated Predict adds superior cushioning technology to protect your joints. A grippy outsole lets you become one with the road. Salomon Predict 2, $150, available for women and men, Nature’s Garden Natural Foods & Shoes
WOMAN-DESIGNED.
Put comfort and style into every one of your 10,000 steps. Specifically designed for a woman’s foot, these shoes are made for walking. The Precise-Return insole gives heels and arches plenty of support and iridescent flex gear overlays enhance your style. Ryka Devotion Plus 3 Walking Shoes, $84.99$89.99, available for women, Dick’s Sporting Goods WALK WITH WELLNESS.
Make every step stylish and healthy. Taos sneakers provide unique structured support to keep your feet happy and comfortable. This lightweight canvas shoe features a shock-absorbing footbed that supports three key areas of your feet. Preserve your energy with every step. Taos Z Soul, $100, available for women, Nature’s Garden Natural Foods & Shoes
SOURCES Dick’s Sporting Goods Broadcasting Square Shopping Center 2767 Paper Mill Rd., Wyomissing 610.373.7366 | dickssportinggoods.com Fleet Feet West Reading 705 Penn Avenue, West Reading 610.320.9097 | fleetfeetwestreading.com Fromuth 1100 Rocky Drive, West Lawn 610.463.3249 | fromuthtennis.com Nature’s Garden Natural Foods & Shoes 4360 Perkiomen Avenue, Reading 610.779.3000 | ngarden.net
just
THE RETURN OF ROLLER SKATING
BY COURTNEY ELL PHOTOS BY CARRIE KIZUKA PHOTOGRAPHY
Oh, My Quad!
1863 saw the world’s first four-wheeled “quad skate,” and it’s been rolling in and out of the public eye ever since. Today, the masses applaud social media for resurrecting roller skating as a once-dead recreational sport. Truth be told, Berks has been ahead of the curve all along, and it’s showing no sign of putting its toe stop down to brake any time soon. With its variety of beloved rinks, skate park enthusiasts, derby skaters, freestylers and artistic skaters alike; Berks’ tenacious and devoted local skate community hasn’t skipped a beat, and it certainly never lost its cool. Tighten up those laces, skaters; Reading Skatepark Association has been hard at work, and city officials have even reported that Reading is expecting a new cutting-edge skate park of its very own!
Has your mind darted to roller disco, polyester and the lemonade stands of your youth? What about Farrah Fawcett's feathered bouffant or Olivia Newton John grooving through Xanadu? Don’t worry. No itchy polyester crop-tops or corduroy cut-offs are required to get you to strutting, though safety gear is encouraged.
Come Skate
with Us!
Believe it or not, a nervous grin or shy wave can gain you access into one of the most en vogue clubs around. A far cry from Mean Girls’ snarky “You can’t sit with us,” today’s breed of roller skater is approachable, diverse and can be seen sporting cheery hoodies emblazoned with ‘Come Skate With Us!’ Berks’ skating community “is welcoming to all people,” says Kristy Brown, 43, of Reiffton. “(It’s) so inclusive. You’ll find people of all genders, races, sizes, ages and orientations in the roller skating community.”
Amy Kline, 33, of West Lawn chimes in, “When I first started skating, I could barely stand up on skates; everyone I met was super helpful and encouraging when it came to learning how to skate. They’re some of the most supportive and encouraging people I’ve had the pleasure to meet.”
“Within the skating community, everyone is equal and has the freedom to express themselves. It allowed me to know the determination and courage to always fight to be the best I could be,” beams Jay-Lyn Feliciano, 19, of Reading. This community “is also the best humanity I have ever experienced. It’s a welcoming group that pushes you to be the best and allows you to be whoever you want to be.”
Park skating and roller derby may appear as mere mayhem, but quirky camaraderie is where it’s at. This hyped-up whirl of endorphins offers the cheeky catharsis we could all use. Speaking of cheeky, roller skating is good for your brain AND your bootie. “I’ve always found the gym to be so boring,” says Kristy. “It’s not just skating around a rink. There’s derby, jam skating, speedskating, trail skating, park skating — there’s something for everyone!”
Roller skating offers low-impact, fun and dynamic workouts. “I feel powerful when I’m on my skates,” Jen Beebe, 37, of Temple shares. “I don’t like walking, jogging or running, but I love to get miles in on my skates. I feel dead tired, but so alive afterward; it’s fabulous.”
“It gives me my sense of self and a way to exercise while having fun!” says Tanara Govern, 50, of Lenhartsville. “My favorite thing about my skating community is the inclusion of everyone. The local rinks that I go to in Berks County are always filled with a mixed crowd of young and old.”
Park Stars and Derby Dames
Tanara Govern (“Helen Darink” “hell-in-da-rink”)
Kristy Brown (“Starbuck”)
Rink Rats to Royalty
Rick Smith, 73, of Douglassville, a towering man of few words and a self-proclaimed loner, began roller skating at age 15. Like any sensible young man, he figured the roller rink was a prime scene to meet girls. Much to his surprise, he was good — multiple-time national champion good! While racking up titles in the rink, he remained a lone wolf, only discovering the warmth of the skating community when paired with his spry new skating partner and now bride-to-be, Kathy Tini, also of Douglassville. “When we first started skating together as a team, he never even spoke to me when I went into the rink! On the floor, however,” Kathy swoons, “the chemistry was amazing.”
At 63 years, she met her skating partner and life partner. They competed together until retiring from competition in 2017, continuing to teach throughout their competitive years. Kathy was invited to Shillington’s Skateaway, starting the artistic skating club. Teaching on skates three days a week, she is now 75 and proudly proclaims, “I’m still hell on wheels!”
“The beauty of skating at any age is the freedom it gives you; the timeout when nothing matters. I’ve loved the camaraderie skating has afforded me in my later years. I’ve met so many skaters from around the world, and we all have our story — our love of the freedom you feel.” As for roller skating’s uptick in popularity, Kathy wishes, “We’re hoping the popularity continues for a sport we’ve given our best years to!”
Staying GOLD
Consider the baton successfully passed to the younger generation by way of all-star artistic roller skater Alivia Spitz, 15, from Exeter Township. Bursting into her competitive roller skating journey at Berks’ own Fantasy Skating Center at just 9 years old, Alivia was smitten. Shortly thereafter, she set her sights on winning a medal with Team USA. 2021 brought her National Championship medals and, this year, she’s skating in the Junior World class division. “Every time I step on the rink, I feel a sense of determination to reach those goals. When I’m feeling stressed with school or with friends, I use skating as an outlet, and the rink is a safe place for me.” Alivia’s love of skating goes far beyond the rink, acting as her finely tuned compass. “I get to do something I love. I experience many things, good and bad, all of which will help me navigate my future. Overall, skating is my ‘happy place’ and pushes me to be the best person I can be.” That is most certainly a win.
New Castle Lawn & Landscape
Outdoor spaces are an extension of your home, a place where you can enjoy the beautiful weather and become immersed in your views from inside. Since 1994, New Castle has been building dream spaces that are both functional and beautiful. Our team of skilled designers will guide you through the perfect vision, be it a large patio for entertaining, or an intimate garden to enjoy a book in, we will create a unique plan developed from your wish list and budget.
Beyond building outdoor living spaces, our experts can manage the grunt work that goes into maintaining a beautiful property. From lawn care and tree services to plant health care and mulching, we will design, build, and maintain your outdoors so that you can spend your time relaxing and enjoying it!
Why choose New Castle? We’re a 2021 Berks County Living Best of Berks winner, Reading Eagle Reader’s Choice winner and a recipient of GRCA’s Top 50 Businesses Award. This is our home, our community, our people. The growth we have had wouldn’t be possible without the amazing clients we have formed relationships with over the years, some of which we have worked with since day 1. We are strong believers in giving back. If we all make a small effort to improve our community, we all win in a big way.
610.796.7818 newcastle94.com
Turnberry Construction Group
For most of his life, Kevin Kozo has been building something.
It started when he was a boy, on weekends when his mom had to work. His dad would take Kevin and his brother to rental units they owned and teach them things like how to hang drywall or run electric. It was the beginning of something. And eventually, it evolved into his career.
Each step along the way, Kevin has gained more experience and knowledge about how to build things better, at a higher standard and with integrity. In 2005, he started Turnberry Construction Group, and he’s built it into a top residential and commercial building company specializing in both new construction and renovation.
From beautiful custom homes in the sprawling hills of Bernville to an executive apartment/commercial property on Penn Avenue in West Reading, Turnberry has a reputation for building all things with excellence. Impeccable design, attention to detail and customer satisfaction are always the heart of every project.
“I love seeing things come to life and giving space a new purpose. Building people’s dream home or helping a business expand, it’s very rewarding. I am a vested part of every project and every detail. I wouldn’t do it any other way,” says Kevin.
What can Turnberry Construction Group build for you?
Riverview Gardens & Gifts
Our garden center and gift store is open following COVID-19 safety guidelines. While masks are not required of customers, our staff is masked, we regularly clean the store, and we have installed HEPA ionizing air purifiers and UV sterilizers to improve air quality. Come see us! Our buyers are always on the hunt for fantastic new products: home décor items, houseplants, beauty products, jewelry, apparel and more. Check out our ever-changing line of on-trend garden products and gifts and stroll through our houseplant house to find hot plants like string of pearls, monstera and fiddle leaf fig! (Houseplant supply varies throughout the year.) In the spring, peruse our own greenhouse-grown annuals. Fruit trees, berry bushes and organic edibles are popular among customers with a massive variety of heirloom vegetables available ready-to-plant. We stock more than 400 varieties of trees, shrubs and perennials. Additionally, we are fully-outfitted for pond construction and maintenance with a large selection of pond plants, fish, pumps and filters, liners, fish food, pond chemicals and more. We are a family business and a 100 percent woman-owned company.
Riverview Tree & Landscaping, Inc.
With more than 45 years serving the needs of Berks and surrounding counties, Riverview has earned an impeccable reputation in the lawn and landscape industry. We design and install garden and landscape plantings, retaining walls, walkways, patios, firepits, ponds, pondless water features, waterfalls and more! We have a plan for every need and budget. Our Maintenance division provides services in mowing, lawn care, spring clean-up, edging, mulching, pruning, weed control, fall leaf clean-up and seasonal decorating services. Customized maintenance plans are available upon request. Riverview is a family business and a 100 percent woman-owned company.
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Connelly Lawn & Garden
Connelly Lawn & Garden is Berks County's premier landscape company. Whether you are looking for scheduled lawn care, to maintain your landscape, or to create a beautiful backyard oasis, we are your solution. Our team of lawn and garden experts, landscape designers, fine gardeners and top-notch hardscape craftsmen can help you create breathtaking, oneof-a-kind outdoor spaces. We have proudly served Berks County since 1990. Members of the Pennsylvania Landscape & Nursery Association.
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703 Henry Circle, Sinking Spring 610.678.8949 info@connellylawn.com connellylawn.com
Boyer's Floor Covering
Looking to revamp the flooring in your home or other property? Get to Boyer’s Floor Covering in Reading! Serving Berks since 1923, the business offers residential and commercial floor products, including carpeting, hardwood flooring, ceramic tile, luxury vinyl tile, laminate, sheet vinyl and custom area rugs. Want to see your options first-hand? Customers can visit Boyer’s expansive, newly designed showroom or take advantage of their shop-at-home service and see many of the products available in your space using the room scene visualizer on their website.
When it comes to installation, Boyer’s Floor Covering boasts a team of dedicated and experienced installers to handle all flooring projects. Boyer’s is proud to provide customized and personal shopping experiences for every customer and will work with you from the start to the finish of your project. Military discounts are always offered, and financing is available.
Weaver’s Ace Hardware
Weaver’s Ace Hardware offers three of the largest and most convenient hardware stores in Berks County. With thousands of products and a friendly and knowledgeable staff, we exist to help you take care of, be comfortable in and enjoy your home and yard.
We can help turn your backyard into a welcoming space for grilling, entertaining and relaxing. We have a large assortment of patio furniture including dining sets, seating sets and firepit sets. We carry an extensive selection of the best brands in grills including Weber®, Traeger® and Big Green Egg®. Our team members are extremely knowledgeable and can help you choose the products that are a perfect fit for your outdoor living needs.
We also make your lawn and garden care easier. Keeping a well-maintained property takes the right tools and know-how, and that’s what we offer with our helpful teams and our huge selection of products like mulches, soils, fertilizers, shovels, wheelbarrows and seeds.
It’s easy and convenient to shop all of our home and garden products online. You can buy online and pick it up in our store or curbside. We can also deliver. Choose delivery at checkout and one of our associates will deliver your order when ready. Visit acehardware.com to place your order or download the Ace App.
We look forward to helping you online and in our stores.
3 Convenient Berks County Locations: Fleetwood, Douglassville & Sinking Spring Open 7 days a week weavershardware.com
2001 State Hill Rd., Ste. 102, Wyomissing 610.927.6494 | dandbelite.com
At D&B Elite Custom, we’re more than just a homebuilder. We empower our clients throughout the entire process, from the initial call to project completion. Simply put, we care. The D&B preconstruction and selection processes are one-of-a-kind and allow for transparent communication between our team and clients so we can complete your project on time and within budget. Our Elite team is comprised of experienced and knowledgeable design and build professionals. This gives us the capacity to complete your project from start to finish, whether it is an entire home being built from the ground up or a partial remodel.
We will work with you to completely customize that home project you’ve been dreaming of for years. Our approach is to take everything our clients envision for their home into account because we recognize that your home is a direct reflection of your personal style. When you work with us you are working with a team whose responsibility is to ensure that your expectations are met – right down to the smallest details.
Make 2022 the year you finally transform that vision into a reality you can come home to each day – whether that is something as simple as a kitchen or bathroom remodel or a specialty project like adding an NBA-sized basketball court to your home’s gym.
Contact us today to see why we were named the 2022 People’s Choice Leader in the Home Contractor and New Home Builder categories!
Spayd’s Outdoor Environments
Michael Spayd, partner at Spayd’s Outdoor Environments, can help make your outdoor entertaining areas come to life!
With more than 30 years of professional experience in designing and building outdoor entertainment areas including patios, outdoor kitchens and living rooms, pavilions and outdoor covered additions, as well as greenscapes to complement your property, the Spayd’s Outdoor Environments team offers everything from 3D rendering design to the construction of your project, making each and every project unique to its setting and the wishes of our clients. Big or small, we do it all, and we do it beautifully.
Breyer Construction & Landscape
Breyer Construction & Landscape is a full-service, family-owned, residential remodeling company serving Eastern Pennsylvania. Our specialty is designing and constructing “dream backyards” for our clients, which include decks and patios. Our company culture emphasizes family, professionalism and customer service. Our team is comprised of hard-working and talented members, offering quality craftmanship and “Excellence in Everything.” Our goal is to create quality living spaces and to develop long-term relationships with our clients. As a member of North American Deck and Railing Association (NADRA) and the National Association of Home Builders (NAHB), our team is constantly striving to stay at the leading edge of training, certification and professionalism in order to produce excellence and quality for each of our clients.
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Empire Home Center
As homeowners in Berks, we own an incredible asset. The value of our homes have increased substantially and show no signs of stopping. Berks County is a hidden gem with huge growth potential. The best way to add value to your home is by incorporating cutting-edge, high-quality products when remodeling. From kitchens and baths to flooring, windows, doors, hardware, furniture, home décor and staging services, we can help. Our home products are on-trend and in stock with multiple options and sizes to choose from. Choose from the aforementioned in-stock product, or sit with our talented designers to make your project look exactly as you envision it. When we design and supply product, we start by gathering your measurements. Our skilled team can design your cabinets with our exclusive software and provide you with true 3D renderings for your home. Since 1955, Empire has been Berks County’s number one destination for all home remodeling needs. We promise to continue implementing staff training, improve our services, and continue providing Berks with the best quality products at the best price. Our entire team is grateful for our valued customers! We are beyond thankful for the relationships we have built with homeowners, contractors, investors and realtors in the area. Our team will help you turn your house into a home that you love!
2741 Bernville Rd., Leesport 641 Penn Avenue, West Reading 610.926.0500 empirehomecenter.com
Ryeland Gardens
Visit Ryeland Gardens, a lovely, quaint gem of a nursery nestled in the historic Conrad Weiser Homestead, Womelsdorf, where your gardening success is our highest priority. We carry a wide variety of annuals, perennials, shrubs, trees, mulch and everything you need to make your garden grow. We’re happy to offer advice regarding plant selection and do our best to give detailed instructions for anything we carry. Stroll through our series of display gardens to see the plants in action. Each has its own unique personality, and we encourage you to view what’s thriving and where, helping to inform your own gardening decisions. Owner Dennis Hurst became interested in horticulture at a young age. His father started his own nursery in the 1970s and Dennis grew up helping with the family business before opening Ryeland in 2015. He says of the gardening, “It’s all about the joy of creation, the appreciation of beauty, and taking delight in what we’ve been given. And that is something I’m delighted to do!” Of Ryeland Gardens, he asserts, “We hope to see you here, and we will do our best to make Ryeland Gardens your favorite place to visit for highquality nursery stock, whether it be for something common, or something new and rare.
In stock treated lumber.
Call for pricing.
ACE HARDWARE SUPPLIES
Special Order Items: Thermatru Doors, Azek/Timbertech Decking, Fibron & Deckorator Decking, Ply Gem Windows & Many More.
OPEN HOUSE
3171 Morgantown Road, Mohnton, PA 19540DECEMBER 5TH FROM 9 TO 3 610-856-1600Hot cider, cookies and more!
Store Hours: Mon.-Fri. 7-5; Sat. 7-1; Sun. Closed Christmas items: Website:Wreaths, Bundles of greens, Poinsettias, Christmas trees, www.greenhillslumber.com Fresh Christmas arrangements, Gift items, Gift certificates
Come Join Us At Our NURSERY GREENHOUSE DISPLAY GARDENS Facebook Page
37 WEISER DRIVE, WOMELSDORF 610.589.4917 RYELANDGARDENS.COM WE DESIGN KITCHENS!!!
CLOSING DATE FOR THE YEAR IS DEC. 18TH. THANKS FOR A GREAT YEAR, SEE YOU IN SPRING!
MANTRA CABINETS & KEMPER: All Plywood Construction, Soft Closing Doors
Spoonies Meet the of Berks County BY COURTNEY ELL
BLOGGER CHRISTINE MISERANDINO (butyoudontlooksick.com) coined The Spoon Theory in her 2003 explanation of how Lupus impacts her daily life. She used a handful of spoons— each spoon representing a portion of energy — to more tangibly explain how she scrupulously rations out her finite allotment of daily physical capacity. Soon after, a world of chronic illness warriors felt more clearly seen, heard and not so alone. Taking on the cozy “Spoonie” moniker as their own, they began using spoons to not only share their experiences with those in their immediate circles, but they also fueled a supportive local and global online community and an ever-growing menagerie of hashtags like #spooniestrong, #spooniewarrior, #spoonielife and #spooniesupport. With an endless variety of local and virtual meet-ups, tips for symptom management, Pen Pals and countless health resources, it’s also free of the unnecessary pressure to prove oneself, a common and exhausting burden of those with a chronic illness or invisible disability. Of note, the Spoonies’ meme game is on point, with shared relatable humor and a friendly helping of fellow Spoonies’ uplifting, cute pet photos when they’re needed most.
MMost healthy people have about the same amount of energy (same spoon count) each day, and healthy individuals begin their day with more spoons (more energy) than those suffering from the fatigue of chronic illness. Certain tasks and everyday necessities can cost more than one spoon. Healthy individuals have the luxury of not consciously precalculating and recalculating every moment of their day.
A vast majority of people don’t give a great deal of thought to the energy they’ll have exerted when they hop out of bed and into their morning shower. After belting out the latest Bruno Mars single, they get dressed, scarf down their breakfast and make their way to work, school or whatever other engagements they have planned for their day. Most individuals usually are capable of keeping a majority of the plans they make, too. Those pushing through chronic illness or invisible disabilities are not most individuals.
The average person doesn’t wake to the dread that brushing their teeth or putting on a fresh set of clothes will put them back in bed due to the physical toll those seemingly minor tasks take. If you’re a Spoonie, the energy to shower AND shave in one go may be a luxury. God forbid you also want to style your hair when your joints won’t allow you to raise your arms past your elbows or you select a shirt with a row of tricky buttons to contend with. For most, getting ready in the morning and heading to work is bundled into a tidy and predictable amount of time, and off they go. Most days, a Spoonie is depleted before they have even gotten to the heart of their day. For those able to work, their spoons are often long gone before attempting to accommodate family time, social outings, dinner or even relaxing.
Coping with Compassion
When Ryan M. was diagnosed with Guillain-Barré syndrome (an autoimmune disorder causing nerve damage by one’s own immune system, leading to muscle weakness and paralysis), he was greeted with more than the expected overwhelm of his new diagnosis. He was warmly welcomed by a remarkable community. Like many individuals with a chronic illness or invisible disability, this Leesport native found a hearty dose of solace and much-needed comradery in the Spoonie community and, believe it or not, reason to celebrate.
When Ryan initially received his diagnosis, the last thing he
wanted to do was make a toast, but when he looks back on that day, he confesses with a shrug that he’s “ready to throw out the red carpet and fireworks. Sure, I’m human and can complain with the best of them.” But, one day, after leaving another arduous day of testing at the clinic, “I went out to my car, white-knuckled my steering wheel and screamed. After that? I cried — one of those ugly cries, you know? I just sat there — felt like hours. Eventually, I sort of just refused to feel sorry for myself. I was done being sad and angry. I was over it and so tired of that being my life for so many years.” He didn’t know how he was going to do it, but laughing, he shares, “I figured Google wasn’t the worst place to start.”
Before he knew it, Ryan was flooded with encouragement, an emerging strength in self-advocacy, new treatment resources and energy-saving life hacks. Best of all, he was introduced to a welcoming community of people he didn’t have to explain things to because they already understood. “It really helps me to not feel so alone in all this. I know I’m not the only one. That’s why I always do what I can to invest back into our local Spoonie community — even if it’s just time or a friendly word. Things aren’t all sunshine and roses. I’m not going to say anything to the contrary, but within the Spoonies, I don’t have to be dripping in positivity. Instead, we talk about the ugly facts of life head-on together, with compassion. I know I needed that in my darkest times; I don’t want anyone else to ever feel like life’s not worth it. None of us are alone — at least we don’t have to be, not really.”
Replacing Pace with Grace
With only two months remaining in Jillian’s nursing residency, her symptoms escalated significantly. After eight years of testing, she always believed that, once the doctors found the root cause for her frequent fatigue and debilitating pain, the next step was the cure. “Always a silverlining person, I was so thrilled when the doctor told me she knew
what was wrong. Finally, we’d put a stop to this plaguing pain and what felt like — well, it sounds awful, but…to me, it felt like a waste of living.”
“I had disappeared from my own life. It had been so long, and so many people were telling me it was all in my head — even some doctors. They’d say to take some aspirin; push through. I was dead-tired every day, but I still couldn’t sleep through the night ever. I was in so much pain, even with medication after medication. When they told me there was no cure, my world was upside-down. My life purpose, my passion — who was I? I couldn’t even vent to anyone who would really get it.” Something as simple as a spoon can be a great middleman.” Spoonie families often find it to be a helpful tool in bridging the gap toward better understanding with friends and loved ones. “I’ve learned that I’m not being selfish or high-maintenance when I set harder boundaries or have to bow out of another girls’ night.” Selfadvocacy is not about selfishness; it’s about being proactive and a good steward of oneself. “My physical and emotional wellbeing matters, and honestly, I’ve learned that I have to soften my expectations and not be so hard on myself.” Jillian shares that chronic illness can often run a person the risk of becoming a “chronic apology giver. Saying I’m sorry implies that I’ve done
something wrong; I didn’t choose to be sick.” Jillian learned to replace her guilt with gratitude.
Finding understanding in genuine Spoonie friendships helped her build up the nerve to breech conversations she was once too scared to have. “By practicing healthier dialogues, I’ve built stronger relationships and a better understanding amongst my family and friends. It’s a blessing. Living with illness and disability is hard. I’m forced every moment of every day to choose exactly how I spend my limited time and energy. How can I not be grateful? There are so many people in the world who waste so much of their life without even thinking. I know I don’t have that luxury, but I also know I haven’t wasted the life I’ve been given. That’s a blessing and so is this incredible community.”
Humor Helps
Toting a Mary Poppins-sized handbag, Jillian K. announces its contents as her “very own walking pharmacy.” Balancing on her rainbow sticker-decked walking cane against her chair and slowly lowering herself down with a wry smile, she points to her very black T-shirt that reads: ‘When I’m in pain, my shirt turns black.’ This Lorane resident was diagnosed with Hypermobile Ehlers-Danlos Syndrome, a rare genetic disorder effecting the collagen production and connective tissue throughout her body, skin and internal organs. “My sweet husband dubbed me Lady Scarecrow. See, the glue that holds a human body and all its contents together and in place — my bones, organs, tendons, digestive system, blood vessels…” taking a deep breath, Jillian explains, “Mine’s not reliable. I’m like a poorly crafted scarecrow; my limbs and organs refuse to stay in their proper place.” Frequent hypermobility complications can occur spontaneously; acutely painful, they cause chronic trauma to her body, inside and out.
Kindness and Candor
“It can be difficult to explain to your 6-year-old something that most adults can’t grasp, huh?
