Posts Tagged ‘Living with disability’

By Mark E. Smith

Have you ever wanted to stop merely surviving and live what you feel is a more deliberate life – that is, one where you feel truly in control and thriving?

I have, and I know many around me who have. However, making that shift from surviving to thriving is difficult, sometimes taking years or decades. Yet, it’s totally possible and vital in order to live to our potential and purpose.

For a lot of us, life placed us in survival mode from an early age. Any number of family dysfunctions or circumstances place children in survival mode. This creates a sort of predisposition toward survival mode living that often follows us into adulthood. I have an acquaintance who I’ve known for two decades and although hugely successful, I’ve seen the individual end up in predicaments, where I’ve thought, Why are you placing yourself in survival mode situations when you don’t need to? I recently found out that this individual had a horrific childhood, where survival mode was all that was known. In this way, when survival mode is ingrained in us from an early age, it can be an extremely difficult mindset to break. It goes back to the adage of our comfort zone isn’t necessarily comfortable; rather, it’s simply what we know – and, too often, survival mode is a comfort zone that we either remain in or return to.

But, here’s where the issue really comes in. When we live in survival mode as a child, it’s a rational coping mechanism – it helps us survive. However, as adults, where we have far more free will, living in survival mode can be disheartening at best, self-defeating at worst. After all, if we’re in survival mode with a relationship, with our health, in our finances or career – or all combined! – there’s an agonizing disconnect between where we are and where we want to be. We’re not moving forward when we’re in survival mode. We’re just …well …surviving.

Now, this isn’t to say that there aren’t valid reason to be in survival mode from time to time. Crises arise in all of our lives from time to time. Yet, there’s an exponential difference between going into temporary survival mode when appropriate crises dictate, versus living in a permanent or regressive state of survival mode where it inhibits our lives, growth, and success.

All of this leads to the question of, if we find ourselves feeling as though we’re merely surviving instead of thriving, how do we shift our lives to the latter?

It’s vital that we frame where we’re at, truly acknowledging to ourselves that our past or present doesn’t intrinsically define our future. With that foundation, we can then begin writing a road map that defines where we want to move our lives. This isn’t an overnight process, but a starting point. If we’re stuck in emotional survival, we have to take steps toward healing. If we’re stuck in financial survival, we have to take steps toward improving finances. This list of survival modes goes on and on, but the key is to truly realize that where we are isn’t where we must stay, and define where we want to be, beginning with small steps in that direction. We simply start somewhere, and even if we don’t know exactly where to start, pick something small to get your mindset to begin changing. Eight years ago I really wanted to get in shape. As one with cerebral palsy, my survival mode had been following what my body dictated. I was skinny, lacking strength and muscle. I didn’t suddenly get “ripped,” as that’s impossible. Rather, I picked up a five-pound weight – and just started somewhere. As a result, over the past eight years, I’ve gone from a 36” chest to a 44” chest, from lifting five pounds to 50 pounds, from surviving to thriving. We begin with baby steps, and months or years or decades later, we’re running proverbial marathons.

Change is tough and scary, especially when we’re living in a survival mode that’s all we ever known. And, yes, the unknown is often scarier than what we know – even when the life we know is harming us. However, we each deserve comfort, security, and happiness. You and I deserve these in all facets of our lives. If we’re in a cyclical survival mode, let us take a step – begin with a baby step! – toward a new direction, one where we don’t have to continue living with pain, anxiety, or fear. After all, the ultimate key to exiting survival mode is in realizing that we are capable and worthy of thriving.

By Mark E. Smith

Have you ever truly thought about bitterness and its toll on an individual? Hurt and anger are common emotions we all experience when a person or circumstance causes us emotional pain. However, bitterness exponentially ups the stakes, taking us to a place where our life and mental health are consumed by it. Bitterness is among our most self-defeating emotions and mindsets – and difficult to overcome once in its grips.

Dr. Stephen A. Diamond puts it well when he writes, “Bitterness, which I define as a chronic and pervasive state of smoldering resentment, is one of the most destructive and toxic of human emotions. Bitterness is a kind of morbid characterological hostility toward someone, something or toward life itself…. Bitterness is a prolonged, resentful feeling of disempowered and devalued victimization.”

Beyond those disturbing characteristics that can consume our life, bitterness is unique in that it’s an emotional state and mindset that we place upon ourselves – at least in the beginning, that is. Others or circumstances, of course, can make us angry or cause us hurt – we can’t control that in the immediate. However, bitterness, in fact, is of our own creation based on our not letting go of then pain or resentment. Then, if left to fester, bitterness can take over our life, becoming a diagnosable mental health issue (known as Post-Traumatic Embitterment Disorder [note the root word of “bitter” in that diagnosis]). Therefore, bitterness is like getting stuck on an ever-revolving hamster wheel, trapping us in an addictive cycle of …well …bitterness.

I recently spent time with an acquaintance who frequently brought up an ex-partner in our routine conversation. The pain and anger were tangible each time the ex was interjected, so I assumed the breakup was within the past weeks or months. I finally asked how long they’d been apart? The startling answer: six years. Firstly, I felt empathy for the hurt this person was feeling, as it was palpable, and I couldn’t fathom anyone living in such pain for six years. But, I also thought to myself, holding on to this bitterness will prevent you from ever welcoming a new, loving relationship into your life.

I’ve likewise witnessed life-defeating bitterness evolve from anger toward circumstances. Living and working in the disability community, I encounter individuals from time to time who’ve held on so tightly to the negative emotions surrounding disability that they blame it for everything wrong in their lives. Disability experience can be frustrating, but it need not fester to the point of bitterness and constant self-victimization. When it reaches such a catastrophic point as bitterness, joy is drained from life, where one is stuck in the destructive mode of resenting life itself.

Bitterness is so dangerous because we often don’t know we’re in that space – that’s how consuming it can be. When embedded in bitterness, we have our lives focused on a target, upon which we thrust blame for virtually everything, and don’t realize how it slowly destroys us.

I found myself in the grips of bitterness in my late teens, and looking back, it was such a harrowing experience. I was on the verge of graduating high school and my resentment toward my biological father was simmering into bitterness because he wasn’t in my life. While I tried to focus on what otherwise should have been an exciting time in my life, my bitterness toward my father consumed much of my thoughts. Fortunately, through counseling and introspection, I was able to realize that my father wasn’t hurting me – he wasn’t even in my life – rather, I was hurting myself with smoldering resentment. Looking back, I was fortunate to break that self-destructive mindset of bitterness, but it wasn’t easy and ultimately took years of processing to get to an accountable, peaceful place in my life regarding the emotions surrounding my father.

While I broke a cycle of bitterness early in my life, and learned the importance of avoiding such dangerous emotional paths, the question remains: how do we universally break a state of bitterness?

The first answer is, we need to recognize that we are bitter. If we’re hyper-focused on how someone or a circumstance has wronged us, and still seething years later, to the point that it taints our thoughts and world view, there’s a problem. It’s at this point where we merely self-victimize. What happened, happened, and we need to let go of it.

Now, a lot of literature on the subject of bitterness, both secular and nonsecular, speaks of forgiveness as the ultimate salvation. The psychology world defines forgiveness as, “mustering up genuine compassion for those who have wronged us.” While this is great for some, modern psychology doesn’t believe it’s universally required – nor should it be in certain circumstances – in order to live without bitterness. There’s tremendous power in simply allowing the past to be the past, and living with gratitude for what today offers. We’ve all been wronged at points in life in ways we can’t change, but why hold onto that when we can release it? Again, this doesn’t mean we must outright forgive in order to find peace. If someone or a circumstance harmed us, we have every right to forever acknowledge the wrong. For instance, as a father myself, I see my father’s behavior as totally inexcusable till this day; however, he’s long deceased and I focus on being the best father I can to my children rather than dwelling on my father. My point is, we can let go of pain without forgiving someone’s wrong or a circumstance. A friend of mine, who experienced a spinal cord injury at the fault of a drunk driver, once said, “I can never forgive the drunk who hit me, but why would I focus on what that accident took from me when I can focus on all I still have?”

Emotional pain and hurt inevitably enter our lives at points. Bitterness doesn’t have to. Let us not necessarily “forgive” or “forget,” but move on in the present, where we remove the power from others and circumstances – bitterness! – and confidently control our own lives with grace and happiness.

By Mark E. Smith

Spring. It’s a fascinating juxtaposition, isn’t it? On the one hand, beautiful perennial flowers sprout and bloom with more vibrant colors than could ever be painted. On the other hand, weeds simultaneously grow, and if left without intervention, soon overtake the flowers. It can become tougher and tougher to see the beauty of spring among the chaos it also brings.

This process isn’t unique to spring and nature. In fact, many of us can identify a similar process within ourselves. That is, we can find our intrinsic beauty overtaken in our own negative self-perception. How often do we look in the mirror and only see seeming physical flaws? How often do we think of ourselves and only recall our seeming shortcomings? How often do we look at the scope of our lives and only think of our seeming failures? I’ve been there, and still go there from time to time, and it’s a tough way to live – in the weeds of life, you might say.

At some point, though, we have to remind ourselves that no matter how thick the weeds of life are, our intrinsic beauty and value is there. We need to clear our flower beds – read that, ourselves – of the weeds obscuring the beauty of it all. This isn’t to say we don’t each have our own weeds – I’m a rolling fiasco with cerebral palsy, and that’s never going to change. However, it is possible to clear our beds and look past the imperfection of sporadic weeds to our intrinsic beauty. I know that’s a tough perspective to have when the weeds of life have grown thick because, yes, what adversely happens to us in life deeply affects our sense of self. Yet, it is possible and vital to regain the self-truth of our buried beauty. So, how do we clear the weeds to reveal our beauty, namely to ourselves?

Speaking from my own experience, I’ve found several ways to “de-weed” my inner flower bed when needed. Firstly, let us acknowledge and try not to take our imperfections too seriously. Having cerebral palsy has its challenges, but I find genuine humor in some of the ridiculous aspects of my condition. My wife and I have a never-ending joke that when I’m in bed, and my legs spasm, I look like a happy baby kicking in his crib. There’s nothing suave about a man’s legs kicking the blankets – but it is hilarious to see!

Next, I strive to accept only the truths in my life. People can say or think what they wish about us, but it’s the truth in our lives that counts. You know who you are and what you do, so try not to let the uninformed, poor intentions others distract you from the truths in your life.

Thirdly, I don’t believe we must develop a thick skin to survive. Rather, we need to merely surround ourselves with trustworthy people. Surrounding ourselves with reciprocating, healthy people is a great way to keep the weeds out.

Lastly, let’s try not to let circumstances or experiences define us, but learn from them, chalking them up as part of life’s journey, and move on. Making a mistake, then allowing that isolated circumstance to define us, is a terrible trap to fall into. We all make mistakes; let us have the self-forgiveness to move on.

Of course, there is one final way to remove the weeds in our lives, exposing our intrinsic beauty, and that is to acknowledge the beauty in others. The world is a mirror, and what we see often both reflects us and reflects upon us. If we acknowledge the beauty in others, we’re far more likely to see the beauty in ourselves, as well.

I wish clearing the metaphorical weeds of life was as easy as weeding a literal flower bed. It’s not. However, we deserve not to be self-mired in weeds, but to see our amazingly unique vibrancies that we contribute to the world. Flourish, no matter the weeds!

By Mark E. Smith

You’ll likely find yourself at that crossroad. Maybe, as with many of us, you already have. So, what do you do?

It all starts out with the best of intentions. It always does, we always do. But then months, years, decades go by and it all goes in a different direction than we expected. And, that’s the tough part, isn’t it? Changes sneak up on us – then they’re just there. Literal changes, conflicting emotions, sometimes regret. And, we try to make sense of how bright sunshine turned into a heavy rain, and at its worst, a secret pain. How do we resolve it all?

These crossroads of life we find ourselves at – a struggling relationship, a defeating career path, a lost sense of identity – point to what once was an ideal, but is now just agony. How do we correct a yearning when the mere mention scares us? How do we tell ourselves, let alone others, that the train for us has run off of the tracks?

Unflinching honesty with ourselves and those involved, that’s how. We’re ultimately accountable for our happiness, and that means. ..well …being accountable. If some aspect of our lives is tearing at us emotionally, let’s address it, let’s put it out there for resolution. Stuffing it down, like squeezing a balloon, only increases the tension.

No one ever wants to do any of it – admit it, speak of it – because it’s scary. No one wants to jeopardize a relationship or a job or family ties or friends or, or, or…. However, we also don’t want to jeopardize ourselves in aspects of life that are preventing fulfillment and happiness. The conflict doesn’t need to be, as long as we’re willing to simply be ourselves.

See, no matter what life predicament we’re in, there’s always the choice of candor, which opens the gate to free ourselves. However, the deciding factor is, do we have the courage to just let it all out and be – ourselves?


By Mark E. Smith

Why do we suffer? If you’re like most of humanity, you’ve probably asked that question based on your own pain or in witnessing the pain of others. Even if you’re among the most optimistic, you’ve likely wondered, why does such a cruel aspect of life as suffering exist?

Now, we have to preface this conversation with the fact that not all suffering is equal. Even when some are more adept at enduring suffering than others, we know that not all plights are equal. Although one may be suffering due to, say, a job loss, it can’t be equated with third-degree burns over 90% of one’s body.

Yet, on a more universal scale, we all encounter some sort of suffering at points in our lives, albeit physical, emotional or mental – or all three. With this fact, though, a fundamental question remains: is there a purpose for suffering, and if so, what is it?

Psychologists Richard Tedeschi and Lawrence Colhoun studied individuals who experienced tremendous suffering, from having a serious illness, to experiencing the death of a loved one, to serving in combat, to living as a refugee. Regardless of the causation of suffering, the researchers found striking patterns in the ultimate affect that suffering had on the individuals: “positive life changes.”

Specifically, the researchers discovered that those who suffered experienced personal growth. The individuals discovered strengths and abilities they didn’t know they had; they found deeper meaning in relationships; they took far less for granted than others; and, they had a more philosophical sense of awareness, including greater empathy for others.

Along these lines, other research also shows benefits from suffering, but getting to those benefits isn’t an easy plight. Psychologist, Judith Neal, researched those who’ve suffered to notable degrees, finding a harrowing path that can lead us from suffering to personal growth. Neal, in fact, identified a sort of road map that we commonly follow. In the process of suffering, proposes Neal, we begin in a dark state. Then we enter a phase of trying to find sense in it all. Next, we discover new perspectives and values. It’s at this point that we discover new meaning and purpose in life. The key is not to get stuck in the dark state, but to move through what researchers assert is a natural, instinctive survival model that results in growth.

Anecdotally, based on my career and the population I’m part of due to my having a disability, I’ve witnessed thousands of individual ”suffering” by both medical and empathetic definition. I’ve watched very close friends die slowly from such progressive diseases as muscular dystrophy, multiple sclerosis, and ALS. Yet, more poignantly, I’ve seen most ultimately thrive in the midst of it all, sharing with me the positive life transformations they’ve gained through suffering. No, not everyone navigates this process – I’ve likewise had friends commit suicide over suffering – and we shouldn’t expect suffering to be rosy or welcome it or seek it out. However, from formal research to my own life experience, I do believe that there is a purpose within suffering: it’s a catalyst for growth. In our darkest times, let us trust in that purpose.

By Mark E. Smith

Words are just that – words. While they have formal definitions, the way we interpret and experience words vary greatly. Trust and intimacy are two such words that, despite formal definition, have dramatically different connotations and practices in our relationships.

On the surface, most see trust in a relationship as intertwined with commitment, meaning your partner isn’t going to betray you. Similarly, intimacy generally means closeness, both emotionally and physically. However, while most couples have built relationships on these core principles for countless generations, the scope of what trust and intimacy mean within relationships is dramatically changing in our culture as we speak.

See, baby boomers, born between 1946 and 1964, are now between 53 and 71, to the tune of 76 million, the largest aging population in US history. Of course, there are a lot of aspects to the baby boomer aging population, but one that is especially intriguing is the shift couples are having to make when it comes to trust and intimacy. I’m not a baby boomer myself, but as a married man with a disability, I have an understanding of what many aging couples are facing, where trust and intimacy are taking on deeper, more complex meanings within relationships based on changing abilities.

The reality is, while baby boomers are demonstrating living longer than their parents’ generation, it means facing such realities as later-in-life illnesses and debilitating medical conditions. As a result, couples are finding themselves in the circumstance of one spouse caring for the other – and it’s a complex transition. Trust and intimacy, then, become a whole different experience from what a couple once knew.

In many situations, the individual needing caregiving must trust enough to feel safe in sharing vulnerabilities with his or her spouse – and that can be a harrowing leap of faith. It may have been that trust was once about fidelity or finances, whereas now it’s about your spouse helping you use the commode or bathe. That’s a big leap in trust for many. Similarly, the caregiving spouse must trust that his or her spouse is comfortable in receiving help.

On the intimacy side, it can likewise be a difficult transition. Imagine being a modest person, where your spouse must now assist you in very private living skills, such as bathing. Intimacy takes on a whole new meaning. It requires a deep understanding of each other’s emotions given the circumstance, and that can be tricky.

Interestingly, when couples are able to expand their scopes of trust and intimacy to include illness, disability, and caregiving, it can bring them ultimately closer together. The key I’ve witnessed, though, is that long-standing routines of life must remain in order to keep perspective and romance within the relationship. And, depending on the circumstance, that can be hard to do (and sometimes impossible). My wife helps me considerably in the mornings and eves, but the bulk of our life is that of a 40-something couple with children moving through life. In our case, while my disability and her caregiving aren’t the ideal, we have evolved and expanded our scope of trust and intimacy, and it adds to our unity as a couple. Put simply, we’ve learned what we can work through together – and that’s empowering to all aspects of our marriage.

Such circumstances are an increasing part of relationships within our culture as it ages, and I hope couples are able to navigate these new waters in ways that expand trust and intimacy rather than erode it. Life is about change and growth – and fortunate couples evolve together, regardless of what life sends their way.

By Mark E. Smith

My entire adult life, I’ve tried to grow a full beard – alas, to no avail. I was of the ‘80s generation, where George Michael rocked that close-cropped beard, and nothing was more masculine than that, right? Yet, every time I tried to grow a full beard to trim George Michael style, it always came in thin, and after two weeks, I gave up and shaved. I just couldn’t grow a beard.

However, several weeks ago, at this writing, I found a video by chance on YouTube regarding growing beards, and that piqued my interest. After doing further research, I learned that there’s literal anatomical science to growing a beard. While some men have thicker or darker facial hair than others, the universal fact is, all of our facial hair grows at approximately the same rate – 0.011” per day – and it takes one month to grow a beard. Therefore, I’ve learned, it’s not my genetics that has prevented my growing a full beard, but my lack of patience.

Not unlike my previous beard-growing mindset, I recently heard a great saying: we overestimate what we can do in two weeks, and underestimate what we can do in two years. And, on both fronts, patience and effort play a role.

How many of us have wanted to snap our fingers and somehow magically change an aspect of our life? We don’t want to spend a year getting in shape, two years getting finances in order, three years building a relationship, or four years going back to school to advance our careers. Heck, I don’t want to wait a month to grow a beard! Rather, we just want change now!

Yet, change doesn’t happen at the snap of our fingers. Rather, it takes patience, effort, and time. We don’t get into shape overnight; it takes consistent exercise and training. We don’t get our finances in order based on one paycheck; it takes long-term discipline and budgeting. We don’t build or repair a relationship in an eve; it takes constant introspection, understanding, and communication. And, we don’t elevate our careers in a day; it takes an ongoing practice of professional growth.

However, when we have patience and apply the effort needed, not over two weeks, but, say, two years, we accomplish extraordinary growth and changes in our lives. I wish there was a magic pill that allowed change to occur overnight. However, there’s not. We are fortunate, though, to have a formula that gets us to our goals, aspirations, and dreams: patience + effort + time = success.

I’ve applied this principle to many aspects throughout my life, and it’s never failed. Some successes take longer than planned – I recall spending every day for close to a decade learning to tie my shoes based on my disability – but patience, effort and time always pay off.

Along the way, especially when we don’t see immediate results, we’re bound to get discouraged – and that’s a great sign. We only feel discouraged when we’re truly trying, so recognizing it as a hallmark that we’re making progress is vital to growth. Discouragement doesn’t need to be a roadblock, but a sign that we’re heading in the right direction. Let it lead us past!

Surely, growing a beard is trivial compared to the many profound areas that we struggle with in moving our lives forward. Yet, the core principles are the same. Let us have the strength to invest patience, effort and time into what we desire – and it is then that our dreams and goals become reality.