Hello, and welcome to my blog! I hope you find many things from this blog. I won’t be just writing about life with a disability, although my life IS colored by my disability experience. Yes, I am a vibrant amputee on wheels, the wife of stroke survivor, the daughter of a disabled veteran and a retired educator who deals with chronic pain and illness.
Still, that’s not what I’m all about and I want you to see that about yourself as well. You are more than a person with a disability, chronic or mental illness diagnosis. You are more than a disabled veteran. You are more than the service provider, caregiver or loved one of any of these people. We are more than our various diagnoses and labels, right? So, while I will discuss advocacy tips, share motivational passages and ideas to keep you going, celebrate milestones in disability and mental healthy advocacy and lament how far we have still to go, I will also share my perspective on every day things in my world that I hope you’ll find educational, inspiring, thought-provoking, annoying to the point of action, and so much more.
Would you like to link back to my blog or quote something in your articles and journals? Just ask first and attribute appropriately, please. Would you like to be a guest blogger or have me be a guest blogger on your blog? I’d love to! Let’s talk more about what you’re looking for.
So, again I say welcome! And thank you for reading and sharing my posts so that others can experience what you have as I share with you my perspective, ideas and experiences living a life beyond limits.
Many people don’t pursue their greatest goals or highest potential because they believe there are too many barriers that will prevent them from becoming successful. Whether the barriers are real or perceived is irrelevant. In fact, both can prevent us from moving forward. Everyone faces barriers and it is important that we acknowledge them, whether they be physical, emotional, personal, spiritual or otherwise. Once we are aware of them and understand how we feel about them we are freer to face them and better equipped to overcome them. My physical impairments often create additional barriers as I go through my day, but I press on because getting certain things done or experiencing certain things are important enough for me to rise beyond the challenges. What’s important enough for you to move beyond the barriers to get through? All of us have barriers as we go about each day, right? These can be practical barriers, financial barriers, emotional barriers or those created by the people around us in the attitudes they share with us. Yet, people with disabilities, and people living with disabling chronic illnesses, often share common qualities of resilience, determination and adaptability. And yes, we also have those days where we just don’t want to try. It’s part of being human. Believe me, I know this to be true as a survivor of birth with spina bifida with depression and limb loss. Still, I press forward. Each movement may tire me, but I know I’ll be further along in my journey if I just take one movement. The barriers you face may be personal to you, but it is vital that you create ways to move forward, to better understand and overcome them if you are serious about achieving your goals. We all face pain, suffering, stress and other difficulties. Many of us with disabilities and chronic illnesses experience these more frequently, or maybe just differently depending, than the average. At times of stress and difficulty we tend to think that life would be much simpler without these hassles, or that we’ve cornered the market on our own self doubt. , but these moments of difficulties also provide us with added opportunities to build new skills and offer us another chance for growth. Adversity is unavoidable, so why fight it? Whatever we’ve been brought to, we can get through. Accept that life has its challenges and develop ways to cope that work for you. Try this: don’t linger too long on past difficulties, but focus on how you got through them and make a list. And, don’t go looking for future difficulties to make life harder for you. Why do that? The current barriers, whether you have a disability or care for someone who does, are enough to deal with! There are many success stories of people (with and without disabilities) overcoming various barriers that inspire me when I feel slammed against a wall in my life. Being ‘up against it’ is often linked to my personal vantage point at the time. There’s a story of the Brooklyn Bridge that I keep in mind as I face challenges of overcoming, that has inspired me and it may inspire the rest of you as well. In 1883, Washington Roebling’s father, John, had a unrealized dream to build the Brooklyn...read more
Career coaching – you’ve read about it, maybe heard or read interviews about career coaches. Now you are a high school or college graduate with a disability and wondering, “Should I get one to help me find work?” It’s entirely possible that a career coach like me is just the thing you need to jumpstart your job search if you have a disability. If you feel like your career has slowed like pouring molasses — or failed to get started at all because you just graduated, a career coach can help you identify all the obstacles that may hamper your job search and help you brainstorm a game plan to overcome these obstacles. Or if you have a specific workplace issue such as wanting to move up in your company or change your focus in your career, a career coach benefits you by understanding all the layers of that workplace issue you’re facing and helps you to explore and/or try out potential solutions. If you have a specific career weakness, such as poor communication skills, difficulty negotiating, or you don’t do well with presentations, a career coach can guide you through steps to sharpen those areas quickly and effectively for your benefit. A career coach can also be focused on helping you with a particular event, like an interview, career fair or salary negotiation discussion with the boss. A career coach can prepare you to manage these things with a confident strategy that has higher chances of a favorable outcome. You might be wondering about all the different kinds of coaches: career coaches, business coaches and executive coaches. Basically, a career coach focuses on individuals at either early stages of their career such as a new graduate in the workforce, and helps you focus “growing” your job-readiness in the right direction. Or, maybe you are at a crossroads trying to manage a change, opportunity, or threat of job loss successfully. A business coach tends to focus on helping small business owners grow their businesses (rather than their careers). If you have more of an entrepreneurial spirit and want to work from home or simply be your own boss, a business coach can lead you through the process of creating a business plan, marketing, connecting with the right business idea and customer base, plus more. An executive coach generally works with individuals at high levels in Corporate America, such as a chief executive officer or vice president of a company. Even the higher-ups, who are sharp in many professional areas, can have weaknesses that need to be tweaked to impact a better job performance and their success as an effective leader. Some will do well using a career coach, others may find it hard to invest in without a lot of carved-in-stone assurances. The expertise and ability of a career coach, as well as your own willingness to do some self-improvement, play a big part in the success of your relationship and results. Think about it. Do you respond well to constructive criticism? Are you consistent and quick to respond when given advice or recommendations to improve? What about having someone else hold you accountable, or does it feel more like you are being nagged? Do you have the time to connect, commit and follow through on a career coach’s recommendations that are in...read more
A dear coaching mentor, Wendy Y. Bailey came into town to present to our professional coaching organization, ICF Charlotte Chapter, and her presentation and presence has inspired me to deeper clarity and more questions about what I do. I’ve tweaked and cemented my coaching brand, thanks to her example, as well as the mentoring and coaching program I participated in with Coach Bill Baren. And I’m very happy with The Life Beyond Limits Coach® path I’m on now as a result of Bill’s Client Mastery Blueprint Program. Still, something just hasn’t felt quite right in various exercises and seminars I’ve done to perfect my niche in disability life and career coaching. Something’s been sorely missing and I’m still dragging around some ideals that are shooting me in the proverbial foot professionally. Yes, I want to coach people with disabilities – first, last and always. But which sub-niche or population? There are, after all, over 75 million people with disabilities worldwide and I can’t coach them all. (Or can I? *evil cackles*) Do I want to coach veterans coming home with disabling injuries? Do I want to coach ‘tweens’ and teens with disabilities? Or do I want to focus on women? I’d love to coach any number of folks with disabilities, yes, and they are all welcome at my door, but I have to be clear with myself if I am going to really attract and be a sharp coach to a particular group of people with disabilities that rings the bell in my soul. After a satisfying dinner, Coach Wendy asked me, “So, what’s her name? What’s she like?” Wendy quickly searched for a pen and a scrap of paper to begin writing, waiting for me to answer. “What’s she do for a living?” I at first looked at Wendy like Scooby-Doo perplexed by a cartoon apparition and gave her my version of Scooby’s “Do huh?” yelp. We shared a giggle and backed up. She then asked more clearly, “Who do you feel most drawn to coach, Monica?” Let’s do a quick profile of that person with a disability, she invited. It didn’t have to be perfect or complete right that minute, but on the back of an envelope, words and phrases began to draw a picture in my mind. Wendy asked me again, “What’s her name?” “Christina,” I said with a slight beam, once I got the name in my head. It took me a beat to think. The name comes from one of my favorite, if not my most favorite, painting, “Christina’s World” by Andrew Wyeth. Many art critics describe the painting as melancholy and depressing, but I see so much hope in that scene where Christina, the actual woman having been a paraplegic from birth herself, lies in a golden field of grassy expanse, fingers combing the ground as she peers over the horizon at her home in the distance. To me, Christina represents a woman with a disability who is reaching for her home, her rightful place in the world, within herself, however straightforward or complex she sees her path and role. She might be a lady veteran coming home with a new body and abilities trying to reconcile the military role she’s been used to with the role of mom, wife, daughter or working civilian woman. She...read more
The U.S. Census Bureau estimates 20 percent of Americans (or about 54 million) have a legally qualifying disability. I am part of that 20 percent or one in five. Despite being part of a significant minority, prior to 1990, recognition of the equal access and equal rights of people with disabilities in our society was nonexistent. A person with a disability is a minority that crosses all the other groups. A person with a disability can be young, old, rich, poor, any ethnic or cultural group, gender or sexual orientation. A disability can affect any of us at any time regardless of our station in life. America’s core values, as I’ve always known my country, has focused on being a land of inclusion with the promise of life, liberty and the pursuit of happiness for all, though not without some amount of struggle for each and every one of us. As I reflect on the recent 20th anniversary of the Americans with Disabilities Act, I think about it as a testament to the fact that change really can happen in incredible and profound ways and, like a ripple in a lake, continues to spread outward. The passage of the ADA on July 26, 1990, was the highlight of my teens. It ushered in, for me, long overdue access to the American Dream for people with disabilities like me. This legislation, distinctly American, revolutionized and transformed the lives of all people all over the country for the better, but we still have far to go, if not in legislation, then in how others receive and perceive us in the human community. At least it opens a dialogue for changing mindsets. The ADA opened wide the doors to better education, more employment opportunities, accessible transportation and essential socialization making people with disabilities relevant to humanity, rather than outcasts. We now have a clear laser lighting the way for people with disabilities to be equal participants in society and realize our full potential. With the power of the pen, and the words of “The Father of the ADA” Justin Dart, Jr., the law finally stated that people with disabilities have the right to go to school, get a job, travel on an airplane, use various means of communication and otherwise experience life to the fullest. Without the ADA, I’m unsure how I and other people with disabilities would live in an apartment, work full-time, use public transportation, go to the store, watch a football game or safely cross the street. The ADA has set clear, unambiguous guidelines for engineering, architecture and human resources, with no bias, to level the playing field so we can access life’s experiences. It spells out what to do to give everyone equal access. Critics may argue that the ADA gives people with disabilities special treatment, but we aren’t asking for special. I and others just want access to what everyone else has. Consider if anything ever happens to you and your abilities (or that of a loved one’s) were suddenly taken away. Wouldn’t you be thrilled to know this law protects you, too? So, upon reflecting on the 20th anniversary of the Americans with Disabilities Act, I am encouraged by the progress made in providing equal opportunity and changing negative perceptions and stereotypes. We have come far...read more
Six months ago today, I was lying in a hospital bed recovering from the necessary amputation of my left leg just above the knee. I had battled, within an inch of my last nerve, a myriad of minor to life-threatening infections and chronic illnesses over the years. In the end, it took over my left foot and my leg just above the knee. Every so often, the foot would give me a problem, heal up, then give me another problem for a little longer. More serious and longer bouts of infection would invade my body each time. By Thanksgiving 2009, I was done with my nightly date with my husband over bandages and wound care supplies. We fought the good fight, visiting various specialists along the way. Eventually, I realized that if we were ever to resume a normal life, if I was ever to feel well again, I needed to face the fact that my foot no longer wanted to play nice with the rest of my body. My body was weary. And wow, so was I! So began what was, for me, a really long goodbye process. We prayed, meditated, sought opinions and finally decided between Veteran’s Day and Thanksgiving that the time had come. I was ready to eliminate the infections and the tiring battle of fruitless wound care regimens that took me away from work, my husband off work early too often and tied up our evenings with rewrapping my bandages. I began literally talking to my foot once the decision was made to have surgery on January 8, 2010. When I would bathe, I would whisper how good my left leg was for giving me full form and a placeholder during wheelchair to car or bed transfers, even if I couldn’t stand on it. I thanked it for how nice it was to have a foot to fit in nice lace-up shoes rather than be confined to the clunky orthopedic ones from my childhood. I apologized for breaking my grand pronouncements to various doctors that, “I came into this world with all 10 fingers and toes. Whether I use them or not, I’ll die with all 10 fingers and toes!” It just wasn’t in the plan was it? Leaving the world with my 10 fingers and toes intact, that is. But, in the years of on-again, off-again wound care that slowly morphed into a long-term, unsuccessful routine, I realized I gave it my best. I did right by left foot. Took good care of it the best we and I knew how. The infections had just taken their toll and it was time to go our separate ways so I could resume a healthier state of being. As a result of my amputation, the last six months have been like waking from a deep sleep. My body feels alive again. No longer am I sequestered to bed rest. No longer am I monitored daily by useless suction therapies or every-other-day home nursing visits. No longer do Bryan and I spend our not-so-romantic evenings over bandages, ointments and very, unmagical potions to make my foot and the rest of me okay again. Today I feel alive, buzzing almost, vibrating with new health. I’m pushing 40 here folks, but I almost feel 25 or 30 again. I am a bit...read more
It’s hard to really understand what the father of a child with a disability, or “special needs child” goes through unless we have been in their shoes. These dads, like my own, are there with their children giving a gift that no one else can give. They give comfort and reassurance that no matter what, everything will be okay. Sometimes dads pretend to be strong when deep down inside, they are uncertain or even terrified. They are the unsung heroes to special needs children. They are special needs fathers and dads. Any male can become a parent. It takes a real man to be a father. And it takes a man, I think, of extraordinary stock to be a father to a special needs child. We deserve extraordinary after all, don’t we? When a child is sick, typically it is Mom who handles the care unless the mom decides to work while the father stays at home, or works from home. Special needs moms are very special, but in the world of a child with a disability, Daddy is equally vital. Fathers tend to provide a calming and logical presence, to help bring some clarity to the fuzziness in the world, and help calm and reassure a child in a way no one else can. In families with multiple children where one child is hospitalized or in need of regular care, usually it is dad who stays home with the other kids while mom is at the hospital with the sick child, unless there’s a relative to sit with the kids while they both go. Dad is the one holding down the fort, keeping the other kids safe and happy, and bringing the siblings to visit the sick brother or sister. Dad’s role is very often overlooked because he is so quiet and often working behind the scenes. In my dad’s case, he was a grade parent bringing cupcakes to school, taking me to school or on field trips around his Coast Guard base schedule, helping me get ready for school, while my mother worked and went to school to finish her degree. Other times, they worked as a team day and night investing in the best opportunities for my development inside and out. It made sense when my dad ended his career in the Coast Guard due to kidney disease and wasn’t totally ill quite yet, to be the house dad. And he did well, right by me. To my mother’s half dismay, I’m sure, I grew up to be a Daddy’s girl, still loving her very much, but bonded close to Daddy. I learned her head strong ways and some of his level-headedness. I learned to freak out first often, but after getting it out of the way, taking a problem apart one piece at a time to solve it. In single parent situations, dads still play a critical role. From providing Mom with time off through visitation, to dads who are the full-time single parents, there are many great single fathers to special needs children who are priceless. I know a few of them myself and would stand by their fathering of their children with challenges through thick and thin. There are also amazing men who step up to the plate and assume the role of...read more
In ever particle of dust flitting in the air or piece of old paper we crumple up as we rest from a full week of packing and planning, there’s a memory. In every piece of lint we’ve wiped from counters and baseboards and in ever dust bunny that seems to scurry from our brooms, there is a memory. Thursday night was the last night in our first apartment together as a couple. Two hearts joined here under one rented roof. We’ve called this place home since the summer of 2004 – much longer than we had anticipated. We’ve seen good and bad here, but mostly good. And for all the not-so-good, there have been good lessons and reminders, so I guess you can’t call anything we’ve experienced really bad. Behind the glossy black door of the accessible unit on Hidden Ridge Lane, many things were revealed and many barriers broken. We opened many minds about what ‘accessible’ really means beyond architecture. Many bonds have been made here that we will pack with us among the many boxes. A loving partnership deepened into marriage in spite of Bryan being mistaken many times for being my attendant or my ‘special roommate’. Job changes and fluctuations in the economy tested our resolve. Dreams were dreamed and realized with still others to come. There was a temporary sick bed for me and my loving caregiver who got me strong again for ‘the next leg of our journey together’ so I could take care of him like I promised I would on our wedding day – even if it is with one leg-and-a-half and two wheels. We survived two home invasions just in the last 20 months, and even more welcomed visitors over the last six yars. We’ve made many dinners here, done many loads of laundry and talked away nights doing bandage changes on the foot I no longer have, before dozing to the sounds of late night cars pulling into the parking lot out front we wished was our front yard instead. We’ve gazed at the pinkish night sky that never got completely black because of Uptown Charlotte lights just over the rise. For all of these things, I am grateful. The apartment may not have been 100% accessible to me, but we learned to adapt together. Across the street, mall security knows us on sight for the countless weekends we saw a movie or had dinner. Charlotte-Mecklenburg Police remember us for not the greatest reasons because of two home invasions where I was home and Bryan at work, but we will be missed they tell us. When others recall an old homestead they think of the penciled in growth charts behind a door on the wall, a dent in a wall or a tree planted there. We’ll remember the many times I ran into baseboards or a door with my wheelchair, the many times I backed into a wall trying to quietly go get a glass of water while Bryan snored the night away, then running into the bed on the way back and waking him up with a start. This was our first Foster home, pun intended, but not our last. Now we move on to the next more accessible home, in quieter but bigger space, that has our name on the...read more
In the midst of all the packed stuff from the last six years of mine and my husband’s life together as renters, I felt safe, nestled in our mess and safe in the knowledge that I was moving to quieter, family-surrounded digs in the small town of Landis. Except on this morning, that quiet nestled feeling was broken by a home invasion – for the second time in just over a year and a half. It was as it was before in October 2008. I was home alone, lounging and being a bit lazy before getting up for the day when I heard banging at the door. I live in an apartment, albeit not for much longer, but I’m used to delivery people banging, leaving and taking packages to the leasing office. Only this time, the banging was followed by a try at the door knob. And then, a hard thud and crack after that. The hard thud and crack from Monday morning was all too familiar to me, almost like a rewind of the home invasion in October 2008. Only, this time, I had a weapon and was terrified more by the familiar known than the unknown on the other side of the door cracking their way into our home. I called out this time during the pounding at the door to let them know someone was at home — something I hadn’t done during the first home invasion, thinking mistakenly they would go away. So, I called out this time during the banging, but must not have been heard because he kept coming. As soon as a try to the knob and a light kick echoed, I immediately grabbed the phone to call 911 and grabbed a weapon. I heard yet another kick, thud and crack to the door. No voice calling out to me as before, just silence, other than my whispering on the phone to 911. The 911 operator directed me to talk as if I was talking to a friend, not to panic and keep my weapon in view, I was going to be okay. The police were coming, she assured me. I talked with her more, hearing whoever it was walking around in our living room, where there was a laptop, my watch and wedding set, a TV, some of our moving boxes packed and a bag for Goodwill set to the side to go out. He must’ve heard me talking because he made his way without a word to the bedroom door and peered in with what looked like a lanyard or wire wrapped around his left hand. The eye contact made my body go electric with fear. As he slipped into view, he made direct eye contact with me sitting up in bed with wild hair, my jelly-like hands gripping a weapon. His response was, “Whoa <expletive>!” He promptly left with that wire in hand — what I realized later was part of our laptop cord, but left the laptop. He had also broken into the unit behind us in our building and taken our neighbor’s laptop, but left ours, my purse and wedding ring that was in full view at the time. It seemed like an eternity, but all of this happened in about 10 minutes, I guess. The police were there in a flash. I could...read more
This past Sunday marked the anniversary of my husband’s stroke in 2002. It seems like Bryan’s stroke is lifetimes away and yet I can feel the same lump in my throat as I recall that phone call from him the following morning telling me he needed an ambulance. We had been dating for about two years and were engaged in our near nightly phone conversation after he and I had each gotten off work. At that time, we were dating long distance and he was commuting back and forth from his small town to mine on weekends. In between, we’d connect after work by phone to talk about our days and what we’d like to do the following weekend together. But on this particular evening, we were both grumpy and tired. I could hear Bryan squirming and moving around on the couch and he told me his right side was tingly, nearly asleep. Must be that he slept on it wrong or worked it too hard at work, he said. A tinge of concern hit me and I voiced it. We fussed a little about how clingy I was being, but quickly made up before we said our goodnights and each went to our respective beds. I didn’t sleep well all night wondering. Something didn’t seem right, but I wasn’t sure what it was. I started to call him again to check in on him, but stopped myself. It was well after midnight by then and we both had to get up early for work. Still, I slept fitfully and was awakened the next morning by Bryan’s hesitant voice. “Don’t worry. I’m OK, but I’ve called an ambulance and Mom and Dad,” he said. I popped straight up out of bed, nearly knocking over my wheelchair next to me. I asked him what was wrong, ready to grab my keys and blow off work in my messy hair and worn out night gown. He demanded I stay put, that he would call me when he figured out something. He had managed to limp to the shower and get clothes on, but the tingling in his arm and leg were getting worse. Reluctantly I stayed put, but I kept grabbing the phone or my keys at my desk, wanting to hurl myself across the distance between here and there to get to where he was. I was terrified. He called a little while later to tell me the doctor had told him it was a stroke. He was having even more difficulty moving his right side and it was basically numb to the point of painful tingling. He was treated and sent home with his parents where he stayed for the whole summer so they could care for him until he could do for himself. I came over to visit and it was awkward. I wanted to open every can, bottle and package in his mother’s house – help him pee even, but he had to relearn on his own. And, I was just “The Girlfriend”. It wasn’t my place. Who was more qualified to take care of him during this time than his mother after all? And I was strangely more aware of my disability at this moment than I ever had been before. Not only was he in...read more
During this Mother’s Day weekend, I’ve been thinking about how my mother became such a strong advocate and stoked that fire inside of me. From the time she knew she was pregnant with me, she has told me she recognized the importance of becoming an advocate for herself as a woman with a sensitive pregnancy and a champion for change in the varied communities I would develop in. Our collective story has been one of one upmanship. We’ve consistenty flown in the face of all the ‘experts’ and naysayers buzzing around us. From the time the doctors told my mother I would have a disability or ‘something wrong’ with me and suggested she may want to ‘end it’ to save her life and/or my own, she developed healthy filters and I built them myself by her example. This is not going to become a pro-life or pro-choice piece. It is simply that she chose to ignore professional opinions and challenge the status quo. It took a lot of risks and guts and love to carry me those nine long, draining months. And somehow, somewhere in her heart, she knew it would pay off. Not every mother is so lucky, I know, but somehow she made it. We made it. From the time I broke the nine-month lease sharing space within her, doctors said I would not leave the critical care unit alive, would not respond to her voice, would never go home, would never sit up, go to school, be independent — be anything productive. You get the picture. Still, she doggedly reached for and pursued each of those milestones with me. Watching my tiny head turn in the isolette incubator as she whispered my name, feeling my tiny fingers squeeze hers through the glass, she cheered me beyond the limits others had already set in their minds about my life without really knowing her strength as a mother, without really knowing what the power of assuming in their fields really means to some families. It took a few weeks, several months maybe? But, I went home with her, learned to sit up, to speak in complete simple sentences by 18 months (so she tells me), to walk on leg braces and a walker by the time I was about three. By age four, I threw the walker down and was on faster, swinging crutches, ready to drag expensive, custom steel and leather leg braces up trees in the yard. In spite of the Florida kindergarten I went to not wanting me there because they presumed I’d ‘fit better in a special school’, she homeschooled me briefly until it was settled (not without a few legal threats) that I could attend public school among my peers without disabilities. And into the mainstream I swimmed, like a happy, grade school fish and flourished. While Mama went to school to finish a degree, my dad was in the military nearing disability retirement due to kidney failure, so Daddy became the ‘classroom Mr. Mom,’ of sorts baking the cupcakes, taking me on class field trips and going through the awkwardness of taking his special needs daughter to the bathroom on said trips. There was nothing weird or unsavory about it. He did his responsibility as a grade parent, mind you in a uniform if he had to go to base later that day or had just come off duty. As I grew into a young lady, there...read more