A wheelchair has taken me places I never dared to imagine.
I’ve been holding my tongue on this topic for a long time. Why? Because it gets me fired up. Let’s call it a righteous anger. Over and over I read posts on social media from Westerners living in developed countries who complain about the quality of wheelchair they have access to.
There’s a huge problem here: ignorance of the reality for people with disabilities in the majority of the world.
Continue reading “Why I Get Frustrated When You Don’t Appreciate Your Wheelchair”People often want to know how I drive. Since a picture is worth a thousand words, I figured a video would be even better. My friend Leslie Ostrander – a quad who uses a different type of hand controls – shot this video while she was visiting town. Click on the photo below to watch this video at BardCard.
For about a year I’ve been digging in to the subject of resiliency. In some ways I think I’m an expert on the subject. At other times I don’t feel resilient in any form or fashion.
So what is resiliency? A simple definition is it’s the ability to bounce back after experiencing hardships or trauma.
Continue reading “A Model of Living Resiliently in the Midst of Suffering”
As I mentioned in a previous post, I attended and spoke at a conference in Knoxville. On the return trip, my mom and I planned a visit to Cumberland Falls State Resort Park. Cumberland Falls is in Corbin, Kentucky; it’s about a three-hour drive from Louisville and two hours from Lexington, Kentucky.
Continue reading “Cumberland Falls: A Beautiful and Accessible Getaway”
Have you seen the movie The Greatest Showman? It’s the fictional story of Phineas T. Barnum. However, the stars of the show – and the ones with whom I resonate – are Lettie (the bearded woman), Anne (trapeze artists), Charles (the little person General Tom Thumb) and the other performers who are hired as “unique persons” for Barnum’s museum and show.
It’s these characters’ sense of feeling like an outcast – and eventually embracing their differences – that has had me watching/listening to the movie over and over again.
Continue reading “What ‘The Greatest Showman’ Can Teach Us About Accepting Ourselves”
A friend recently posted a picture on social media of some Moroccan chili. I love trying new flavors, so I commented, “Recipe, please?”
Continue reading “Moroccan Chili with Sweet Potatoes”Every seven or eight (or nine) years the process begins: It’s time for a new power chair. There are few decisions in life that affect me as much as what chair I use during the 15+ hours a day I am in it. Read this BardCare article for tips on how to choose the perfect power chair. Click on the photo below.
Each year Philadelphia, Pennsylvania, hosts the Bayada Regatta, an adaptive rowing – or para-rowing – event. Watch the video below for an introduction to para-rowing and to see video of me rowing at this year’s regatta. For more information on para-rowing, read this BardCare article.
Finding clothes that fit well when seated can be challenging after a spinal cord injury. The good news is I’ve discovered quite a few things that work well for me (including The Most Awesome Dress Pants Ever Made). Read this BardCare article by clicking the photo below.
At the beginning of the year I decided I need to see more of Kentucky. I’ve lived in Louisville since I was 11 years old, but I haven’t seen the majority of the state. So when I found out I was going to go to and speak at Quality Life Association conference in Knoxville, Tennessee, I decided to make it an opportunity to see some sites along the way.
Continue reading “Berea, Kentucky: A Beautiful Series of Unfortunate Events”I had been debating whether I should get a home security system. But after a neighbor’s house was broken into, I decided I would rather be safe than sorry. Click on the photo below to read this BardCare article about how I chose a home security system.
Let’s be honest. Cooking with a disability takes quite a bit of time and effort. With my Quadly Cooking recipes, I offer Tips & Tricks to making healthy meals. But in addition to easy shortcuts, good cooking utensils, gadgets and appliances are necessary. So I have made a list of my favorite things in the kitchen.
Continue reading “My Favorite Things in the Kitchen”
Taking a dance lesson took more courage than any other physical activity I’ve attempted. Yes, I row and play tennis and wheelchair rugby. I’ve tried adaptive rock climbing, sled hockey and downhill skiing. But dancing from my wheelchair has always been off-limits.
Continue reading “The Courage to Dance (video)”After a spinal cord injury we become educators. Advocates. It is a role that’s thrust upon us – whether we like it or not. Click on the picture below to read 6 ways I try to educate others about life with a disability.
There many ways to manage bladder care with a spinal cord injury or disability. Foley catheters, suprapubic catheters, and intermittent catheterization are options. There are pros and cons to each method. This is my story of how I decided to undergo a major surgery to be able to independently catheterize through a stoma.
Continue reading “From Foley to Freedom – My Experience with the Mitrofanoff Procedure”
As someone who works for an international non-profit organization, I have the perk of traveling at times. I recently attended a conference in the Czech Republic. After the conference, a few friends and co-workers decided to spend a couple days in Prague. I hadn’t traveled to Central Europe before, so I didn’t know what to anticipate. As always when traveling on wheels, expect a few bumps in the road. And I mean that both literally and figuratively.
Continue reading “Prague is Worth Every Bump in the Road”
Thirty years ago I was tumbling on the morning of July 11. My feet slipped on the wet grass and I sustained a C6-7 spinal cord injury. As others will tell you, many things in life are lost after a spinal cord injury. Independence. Plans for the future. Friendships and other significant relationships. What follows is the story of my best friend, Barbara. It reveals how a spinal cord injury affects the people in our lives.
Continue reading “How my Spinal Cord Injury Affected my Best Friend”Did you know that people with spinal cord injuries T6 and higher can’t sweat? Unfortunately, sweating helps regulate our body temperature. I easily overheat once the weather starts getting warm. Read what I do to try to beat the summer heat by clicking the BardCare article below.
Over the years I’ve fallen in love with Locust Grove. The Georgian-styled mansion was built around 1792 and is located on 55 acres of beautiful rolling hills. The house and land belonged to William and Lucy Clark Croghan. Its rich history includes throngs of well-known historical figures who were welcomed at the Croghan house.
Continue reading “Locust Grove: The Perfect Place to Experience Louisville’s History”One of the best things about my life is the friends I have met along the way. Emily Shryock is one of those amazing people. I met her when I fist started playing wheelchair rugby. In this BardCare article, I interviewed Emily to learn more about her experience with AcroYoga.
Click on the photo below to read this article.
The thought of traveling after a spinal cord injury can be daunting. One of the biggest questions is, “How will I get on an airplane?” Watch my BardCare video at the link below. And what do I pack? Read my suggestions in Wheelchair Must-Haves for Traveling.
When my iPhone 5s starting getting glitchy on me, I held out for over a year. I’m on a budget and had to stick to it. Plus I was determined not to get a new phone until Apple came out with a smaller model that was the size of the iPhone 5. With limited hand function, I wanted to make sure I could safely and easily hold the phone.
Continue reading “Accessibility Features on the iPhone You Need to Know”
The Christopher & Dana Reeve Foundation is currently undertaking an Instagram campaign to combat the stigmas and misperceptions of what it means to live with a spinal cord injury and paralysis. I recently shared my story at their request. This is what I posted.
Continue reading “What Do You See When You See Me?”
I love pasta. Spaghetti, linguini, macaroni, rigatoni. I love it all. Unfortunately, cooking pasta is difficult with limited hand function due to a spinal cord injury. But I’ve found an easy and healthy alternative.
Continue reading “Quadly Cooking: Easy “Pasta” with Meat Sauce”
Ever since my injury I’ve worn front closure bras. As a quad with limited hand function, these were my go-to for ease and function. But fewer front close bras – without a racerback – are being made.
What’s a quadly girl to do?
Continue reading “My New Favorite Bra is Made by True & Co.”“How do you get in and out of bed?” It’s a common question children ask. And if kids are asking, I know adults are wondering! Below is a video demonstration of a sliding board transfer. It’s entirely balance, physics and strength. I have no function below my level of injury, so this transfer is done completely with my arms and shoulders.
In January I attended a conference for work. After dinner we were chatting and getting to know each other as we made our way back to the conference room. All the classic questions were asked: Where do you live? What organization are you with? What is your role?
And then it happened.
Continue reading “The Uncomfortable Truth about Sexuality and Disability”There’s nothing worse than hearing “You don’t have enough faith” or “Just work harder.” Read about these and other myths and misconceptions about SCI in this BardCare article. Which ones have you heard – or maybe said? Click on the picture below to read.
On the night my friend Dot completed chemotherapy, a group of friends was going over to her house to celebrate. Due to the chemo and the accompanying fatigue, they opted to order pizza. As I read her email, it was 2:00 in the afternoon and I agreed pizza sounded tasty. And easy.
Continue reading “Quadly Cooking: Lazy Friday Night Pizza”The E-Wand is a device that attaches to your mini-blinds. It allows you to open and close mini-blinds, as well Venecian and horizontal blinds, with the touch of a button. It’s officially on My Favorite Things list! No more living in a cave on sunny days or fumbling with difficult-to-turn wands! Watch my video below to see how they work.
We may often feel isolated or lonely if we are not intentional in building a community of support. In this BardCare article, I cover seven ideas on how to be intentional in building community. Click on the photo below.
Sharing an enjoyable, local adventure with a friend always makes for a great day. Add in great food, handmade candy and wheelchair accessibility – and you’ve got a winner. But what if tell you that you can find all of this at and around Joe Ley Antiques in downtown Louisville?
Continue reading “Joy Ley: An Unexpected Free Adventure in the Heart of Louisville”Early on in my injury, I didn’t want to do it. It was horrifying enough to have my mom and grandma help me with personal care. But a stranger? No way! And then I had to. Read this Bard Care article by clicking on the photo below.
When I got a phone call asking me to share my story for a podcast with Kyle Idleman, I was little stunned. But of course I said yes. So what do we do when life hands us a tragedy? Listen to the podcast by clicking on the link below. Kyle’s new book Don’t Give Up is on shelves now.
My local grocery store has started carrying pre-cut vegetables like zucchini pasta, acorn squash pasta and sweet potato “rice.” The sweet potato rice is now a favorite of mine.
Continue reading “Quadly Cooking: Sweet Potato Cinnamon Hash”
Whether you use a wheelchair or not, finding a great pair of dress pants is never easy. Thankfully, I took a gamble buying Betabrand Dress Pant Yoga Pants. And it paid off. I found the perfect dress pants. Even as a wheelchair user.
Continue reading “The Most Awesome Dress Pants Ever Made”Over the years I have figured out how to stay warm. Without the ability to regulate my body temperature, dressing properly is very important.
Read my tips in this article for Bard Care by clicking on the picture below.
After my C6-7 spinal cord injury at age 16, I experienced severe muscle spasms. My legs would extend out straight or pull in so forcefully that the Velcro® strap behind my heels would break. I would kick off my shoes when my legs involuntarily shot out straight. My hands balled up in fists so tight that my finger nails left an impression on the palms of my hands
Continue reading “What Freed Me from the Prison of Spasticity”Resistance to antibiotics is becoming a worldwide problem due to the misuse of antibiotics. What is the one thing you should do before treating a UTI? Click on the link below to read this article I wrote for Bard Care that researches this life-threatening issue.
I did it. After several years of being restricted by a disobedient bowel program, I traveled solo for the first time after the BCIR procedure.
Continue reading “Yes, I Traveled to Florida (But not for THAT Reason)”
It had been 10 long months since I’d had an occupational therapy session. And I was feeling the repercussions of it. Finally, I bit the bullet and purchased two sessions with a massage therapist.
Continue reading “How and Why I Got a Professional Massage”
I’d like to punch the person who first used the phrase “confined to a wheelchair.” Or at least roll over their foot with my power chair.
Earlier this week I got riled up after reading a great article about my friend. Unfortunately, the phrase “confined to a wheelchair” stuck out to me and left a bad taste in my mouth (as my grandma would say).
Continue reading “Do Not Tell Me I’m Confined to a Wheelchair”
It had been 9 years since my spinal cord injury. I had just graduated with my master’s degree in counseling psychology. Although I was uncertain of my future career, I was sure of one thing: I was taking a year off to have a series of surgeries called tendon transfers.
Continue reading “How The Gift of Tendon Transfers Changed My Life”Why do I take the time to wrap gifts each Christmas? It gives me time to be thankful for the gift of Dr. John C. Shaw, who gave me increased hand function and independence through tendon transfers after my spinal cord injury. (Video)
Click on the picture below to watch my video at Bard Care about wrapping presents and tendon transfers.
To see other examples of how tendon transfers affect my ability to cook, watch Quadly Cooking: Cheeseburger Soup and Quadly Cooking: Coconut Curry Lime Chicken.
I love soup. Warm. Easy. Comforting.
Watch the video to see how easy it is to make cheeseburger soup.
The recipe, as well as Tip and Tricks, are included. Continue reading “Quadly Cooking: Cheeseburger Soup”
Many things in life are more complicated with a spinal cord injury. Whether it’s shaving my legs or staying warm, I’ve found several “life hacks” that make every day activities easier. Continue reading “My Favorite Things: Personal Care Items”
My story is in this video below, but that does not mean I’ve figured all this out. I still struggle. At times I despise the words endurance and perseverance. But I can look back and be grateful for the many opportunities I have had as a result of my injury. I have learned to “kiss the wave.”
It’s cooling off outside which means it’s time for comforting dishes that leave us full and content. This easy, autumn-flavored pumpkin chili will leave you wanting more. Click on the photo below to read the recipe and Quadly Cooking tips.
During the seemingly never-ending string of surgeries and recovery time this year, my mind would wander to that all familiar question of doubt: Why me? Continue reading “When I Need to Count Every Blessing”
I didn’t know what to expect. But I’d heard the horror stories. The inaccessibility. The discomfort.
I was past my doctor’s recommended age to have a mammogram. But my primary care doctor was relentless in her pursuit, so I made an appointment at an imaging center several miles from where I live.
At Bard Care we’re getting the word out about the importance of mammograms. Three of six of the women on our team have had breast cancer. Read my entire Bard Care article by clicking the link below.
The weather is cooling off and I will no longer be able to get out on the river to row. During the winter (actually, all year long), I use a rowing machine (ergometer) to get a good cardio workout.
Click the photo below to watch my video at Bard Care.
A 3-month post-surgery video update on how the BCIR (Barnett Continent Intestinal Reservoir) surgery has given me the ability to independently do my bowel program for the first time in 29 years.
Weight, nutrition and diet, and exercise are important factors to consider in maintaining our health with a spinal cord injury. Click on the image below to read my article at Bard Care to read the latest research.
Qabuli Palow is one of the most popular dishes in Afghanistan. I figured out a way to easily mimic this dish. Is this recipe the “real deal”? No, but it tastes incredibly good and reminds me of my time spent in the country. Best of all, it’s all done in a rice cooker (and with a fraction of the oil). Continue reading “Quadly Cooking: Qabuli Palow”
Rainy Day + Empty Fridge = The decision to try home delivery with Kroger Continue reading “My First (but not last) Experience with Kroger’s Home Grocery Delivery Service”
Read how Melissa has successfully transitioned from receiving SSDI to college and grad school to working full time with the Ticket to Work program.
Click on the picture to read the article at Bard Care.
After my 3-week hospital stay turned into almost 17 weeks, I discovered several must-have items for an extended stay as an inpatient at a hospital or rehab facility. Below is a list of my top 8 recommended items. Continue reading “8 Things to Pack for an Extended Hospital Stay”
A lot has happened since my last update. I flew home. Then less than two weeks later I flew back to Florida. Continue reading “BCIR Update #7”
Have you ever stopped to consider if people in developing countries have access to wheelchairs or other mobility aids? I hadn’t until nine years after my injury when I asked David and Magda, two friends from Poland, what accessibility was like in their country. Read more at Bard Care by clicking the image below.
Today is the 29th anniversary of my injury. (Math tells me that, but I don’t believe it. I’m not even 29 years old, right?)
On the evening of July 10 when I was 16 years old, my best friend Barbara and I sat in a swimming pool discussing what it would be like to be paralyzed. Continue reading “Commemorating 29 Years of SCI”
Do you want to travel to a developing country (or simply travel), but think it’s impossible? Don’t dismiss the thought. It might take a little extra planning, some additional help (how much depends on your disability) and possibly a little extra cash. But it’s well worth the effort. Continue reading “Why Traveling Overseas with a Wheelchair is Not Impossible”
Whether it’s Qdoba, Chipotle or Moe’s, building your own burrito in a bowl is a tasty treat. Save some money and do it at home. It’s easier than you can imagine. Continue reading “Quadly Cooking: Naked Burritos”
I’m home. I’m on IV antibiotics and had a scary run-in with sepsis the last week. But I’m home. Continue reading “BCIR Update #6”
As a quad, it’s difficult to deal with earrings or necklaces so I just keep it simple with scarves. Click on the photo link below to watch my Bard Care article on accessorizing with scarves.
Butt. Tush. Rear end. Trasero. Heine. Pompes. You name it, my derriere has been called it. Click on the link below to read about my experience with pressure sores and 7 tips I have to prevent future breakdown. Click the picture below to read my BardCare article.
Wheelchair rugby. It’s probably not the first sport you think of if you know me. But I’ve grown to love it.
Read more at Bard Care by clicking the link below.
I started to write this update 10 days ago. It began: “I’m dressed. I transferred into my chair. I’ve been spending about 45 minutes twice a day outside here in Florida’s fresh, breezy warm air. But Thursday or Friday will be the true test: I will begin intubating (using the stoma to empty the new pouch).”
Today (Thursday, May 17) I’m still sitting in a Florida hospital room, drinking Miralax to clean my system out for a second surgery to repair a fistula (same one as last time). Continue reading “BCIR Update #5”
On my birthday this year, my thoughts turned to my mom. I realized at 45, she was three years into having a 19-year-old daughter with a spinal cord injury.
Read more at Bard Care by clicking the image below.
Friends + Soup + Netflix = A Great Evening In. This soup is extra comforting when served with some warm, crusty bread. Continue reading “Quadly Cooking: Sausage and Kale Soup”
My bedroom is a place I go to not only to sleep, but to relax, rest or read.
Here’s a list of 7 fixes in my bedroom that make it more accessible and functional. Continue reading “7 Easy Fixes to Make a Bedroom More Accessible”
I had not expected this update to be written from a hospital bed. I “should have been” discharged last week and back at home. Instead I had surgery for a fistula on Sunday. Continue reading “BCIR Update #4”
After my injury it took me quite some time to learn, or re-learn, the concept of trying. My go-to response was, “I can’t.”
Eleven years after my injury, I finally attempted a sport again. I tried playing wheelchair tennis. I was awful. Seventeen years later, I’m still bad at tennis. But I try. And I play.
I’ve learned to live. What’s the use in being alive if you aren’t living boldly? Click below to read about 4 principles I try to put into practice to live an abundant life.
Breakfast? Dinner? I say both. French Toast is always a winner. Continue reading “Quadly Cooking: French Toast”
Well, I knew when I decided to have this procedure there were risks of complications. Unfortunately, I’m one of the people to develop a fistula. A fistula is a small hole. Mine is located near the top of the pouch and leads to the surface of the skin. When a I began intubating on Wednesday, it didn’t go well. By evening, I was back on suction with a scope scheduled for Thursday. After the scope confirmed the fistula, I had a CT Scan with contrast. Continue reading “BCIR Update #3”
I thought I knew what I was getting myself in to. And yet…
This is so much harder than I ever imagined. Continue reading “BCIR Update #2”
Click the link below to watch a video of me demonstrating how I put in my contacts.
Due to overwhelming support, but inadequate energy, here’s a brief overview of my BCIR journey so far. BCIR is an internal continent catheterizable colostomy with no external appliances like a colostomy or iliostomy. Go to www.bcir.com for more info on the procedure and here for my journey on the decision.
I enjoyed “My Last Supper” and took in a beautiful Florida sunset.
I recently came across an article about Target’s Universal Thread™ adaptive clothing line. I’ve heard this song and dance before, so I was hesitant, if not downright skeptical. But my interested was piqued. Continue reading “Why the New Adaptive Jeans from Target Are the Real Deal”
Stuff. Stuff is here. Stuff is there. Stuff is high and low and everywhere. It gets dusty. And dirty. And dated. What’s a person to do?
In this article on Bard Care, read five tips I have for keeping my home as clean and clutter-free as possible. Click on the link below.
Part soup. Part stew. Part cabbage rolls. All served up in one wonderful bowl. Continue reading “Quadly Cooking: Stuffed Cabbage Roll in a Bowl”
I plan on having surgery at the end of the month (as long as insurance cooperates). Watch this video to hear about the BCIR procedure and how I hope this will help me gain back one of the biggest losses that comes with a spinal cord injury.
For information on BCIR, Palms of Pasadena Hospital and Dr. Rehnke, go to BCIR.com.
Some items make life easier. Others make it more enjoyable. I thought I’d share some of my favorite quad-friendly modifications or adaptations in my living room. Continue reading “My Favorite Things: In the Living Room”
In this Bard Care article I discuss some of the modifications I made to the condo I bought once I was ready to “fly to coop.” Click on the picture below to read the article.
I want to introduce you to a coworker. Rosie works in my office and she has a big job to do. It’s stated in her job description that she is supposed to periodically re-energize herself so she can finish her assignment. Regrettably, we find Rosie in odd places in the building, simply having lost her ability to do her job because she ran out of energy. Continue reading “Don’t Be Like Rosie: A Lesson in Self Care”
Folks, pay attention. This dish is so incredibly delish. And easy. I’m not confident in my fish-cooking skills, but I figured this was worth a shot. And I’m so glad I tried it. Continue reading “Quadly Cooking: Asian Salmon and Kale Rice Bowls”
It’s almost Valentine’s Day. With that in mind, I’m re-posting this Bard Care article.
I’m single. I rarely sulk in my singleness. I am free to do what I want and when. The remote is always in its place, except when my dad comes over. As an introvert, I truly cherish my alone time. I’m in charge of my finances. (Read: I like control.)
Read the rest of the article by clicking on the picture below.
Watch my video over at Bard Care Community on how I manage to put on boots as a quad.
Click the picture below to be linked to Bard’s website.
I know what you’re thinking: “Cinnamon and raisins in pasta?”
I promise, it tastes as good as it looks. Continue reading “Quadly Cooking: Sicilian Pasta with Meat Sauce”
Want to learn the lingo of spinal cord injuries? Here is a “Glossary of Terms” for your perusal that I wrote for the Bard Care Community. Whether you are an AB (able-bodied) or a fellow SCI/D, pass this along so you can learn our language.
Let’s start off by defining Quadly Cooking. I’m a quadriplegic due to a C6-7 spinal cord injury. “Gimpy” or “quadly” aptly defines the function – or lack thereof – that I have in my hands. Continue reading “Quadly Cooking: Coconut Curry Lime Chicken with Rice Noodles (Video)”
On Wednesday, January 17, 2018, an article I wrote was published by The Mighty. To say it has resonated with many people is an understatement. Unfortunately, just as surprising is the number of people who are unaware of the financial issues that some of us with disabilities face.
I share my story with the hope that my voice will be heard in Frankfort. I urge lawmakers to reverse the income limits for personal care programs so that others with disabilities will not find themselves in my position.
Click below to read this article.
