Adversity – PowerchairDiaries

Sometime Around 2 A.M.

By Mark E. Smith

I don’t know what time it is? I guess it’s sometime around 2 a.m. It was mere weeks ago that I could simply roll over or sit up and look at the clock. Not anymore.

I awake several times per night like this now, in pain from not being able to roll or shift positions myself. I lay awake until the pain is unbearable, then I wake my wife. Sweetie, can you please roll me over?

Age, disability, illness and surgery has all taken its toll – and much of my physical abilities and health with it.
I suppose I should be devastated, even bitter toward it all. I’ve had to live with cerebral palsy my whole life, now this – how can life be so cruel?

Yet, I don’t feel that way at all. In fact, I feel the opposite – blessed. No, I don’t want any of this, not the debilitating illness or chronic pain or loss of abilities. But, it’s not my call. It’s aging and illness and life at play. Resenting it all wouldn’t change anything other than adding a self-defeating tail spin to my life. Acceptance is liberating.

My wife is right next to me, touching me, side-by-side. We have a king-size bed, and she insists that I somehow end up on her side no matter what. Yet, in reality, I don’t think she’d want it any other way – close, touching, reassuring, especially now, for the both of us.

Life is about change, and questioning it or resenting it over the long run only defeats us. I’m not saying taking time to acknowledge loss or express our feelings toward adverse changes isn’t normal or healthy – absolutely it is. However, there has to be an expiration date for it, or it will consume our lives more adversely than the actual changes.

I’m to the point where my pain is unbearable and I need my wife’s help rolling over. I gently awaken her, and she softly rolls me over, asking in the darkness if I need anything else?

I answer, no. My answer applies to both the immediate and my life in whole. In the silence of the night, I think about my wife and our daughters and the blessed life I have – and I recognize that I’ve never had more.

Where the Intertwined Branches Meet

By Mark E. Smith

I was asked how my wife and I maintain a healthy marriage in times of adversity? After all, that’s when most couples struggle, albeit based on health issues, financial crisis, pressures of parenting, or countless other life circumstances. In fact, it’s a topic I’ve pondered and my wife and I have discussed, especially based on recent health issues in our family. So, what have we learned about trotting through the tough stuff in life as a couple?

We’ve identified four key components to successfully facing life’s adversity as a couple that serve us well. I realize there’s no science to this, as each couple and their personalities differ. However, there’s merit to what we’ve learned, sound factors based on our experience.

Firstly, an advantage to any relationship is in knowing whether the individuals can, in fact, address adversity in healthy ways. The fact is, some people can’t. I live and work in disability culture, and I’ve heard many stories of accident and illness, where when adversity struck, the healthy partner left. We don’t like to believe that happens, but it does. It’s not always predictable, but if we know that our partner can handle adversity, it’s a tremendous reassurance. My wife and I both knew adversity as individuals before we met, so there was a confidence that our vows of “for better or for worse, for richer or for poorer, and in sickness and in health.” If you’re in a long-term relationship, you’re going to experience all of these, and each partner must be committed to moving through them, not caving when times get tough.

Secondly, it’s imperative to tackle the issue, not each other. Too many couples lash out at each other during adversity rather than focusing on the issue. If you can address the problem as a team – pointing at it, not each other – you’ll simultaneously solve the issue and strengthen your relationship. I call it the “high-five effect.” Celebrating victory as a couple is tremendously empowering to a relationship.

Thirdly, respect each other’s individual experience amidst adversity, as they may not be the same. This is an invaluable principle that my wife and I learned the hard way. I was recovering from a health issue and she was placed in the role of caregiver. One morning both of our emotions around the situation came to a head. I expressed mine, she expressed hers, and soon we were in a war of words for whose perspective was right? The fact was, we were both right in our feelings, as our experiences within the circumstance were different based on our roles. We learned to respect what each other was going through based on our individual experiences, not assume that they were the same or that there was only one perspective.

Lastly, it’s vital to not neglect the core normality of the relationship regardless of the adversity. For us, this means that humor, affection, romance, and shared joys remain during even the toughest of times. Ideally this is an intuitive and natural part of the relationship, regardless of circumstance; but, sometimes we should stop and think, “What does my partner need at this moment?”

My wife and I are just a married couple trying to make it through the trials and tribulations of life like everyone else. We’ve faced a bit more adversity than some, and a bit less than others. Yet, despite our lessons learned, there’s still a simple truth to all lasting relationships: Love conquers all.

Welcome to the Here and Now

By Mark E. Smith

As part of the disability community, I’ve long known those with progressive and terminal conditions. While not everyone handles such life paths the same, I’ve been struck by those who express and experience absolute joy while living with their conditions. I’ve thought a lot – and talked with some – about how any of us can experience true joy in the face of exceptional adversity? What I’ve learned, and subsequently practice, is an approach to life that I’ve seen bring the greatest fulfillment, one that we all can live by.

Progressive and terminal conditions can be tough for many because one can get caught up in dwelling on the past while fearing the future. There’s not much room in there for joy in the present when the past and future weigh on us so heavily. What’s more, this very human emotional dynamic isn’t exclusive to a progressive or terminal condition. Many of us can find ourselves dwelling on the past while worrying about the future based on countless life circumstances. So, how do we find joy amidst such daunting circumstances?

The key is found in living emotionally present during any given moment. It sounds like psychological or philosophical babble. But, truly, the past and future aren’t real in the present. What’s happened is past, and what may happen is the future. Yet, neither is occurring now. The only state that we’re truly in and can work with is the present. Therefore, if we want to experience joy regardless of the circumstances that have or may affect us, we simply need to be emotionally present, in the here and now.

For me, this approach to life has allowed me to not only release the past and worry far less about the future, but most importantly, it’s allowed me to savor more moments in my life, being totally emotionally present. This isn’t to say I never think about the past or consider the future. However, there’s a difference between dwelling on the past versus remembering it, just as there’s a difference between worrying about the future versus setting goals or recognizing objectives. The profound advantage to being emotionally present in any circumstance is that we can fully experience the power of a moment without interference. We can purely revel in what is – for that’s truly all there is.

I recall being in a hospital ICU after a major surgery. A lot went wrong, was going wrong, and my future was uncertain. I was with my wife and oldest daughter, and in that moment, I genuinely didn’t have a care in the world. I was the luckiest guy alive because I was with the two loves of my life. What happened or may happen didn’t matter. I was with my wife and daughter, and that was reality, that was the beauty of life surrounding me in the moment.

I apply this same principle to my everyday life. No matter what I’m doing, I strive to be emotionally present, where multi-tasking of emotions rarely exist. Whether I’m talking to my daughter or a stranger, and everyone in-between, I immerse myself in that connection. If I’m at work, I entirely focus on the task at hand. And, as far as going to bed or waking up upset… well… it doesn’t happen, as I’m just thrilled to be with my soul mate, in the present. No, I’m not perfect at any of this – we all have emotions that catch us off guard – but I’m pretty good at being present because I know how it’s amplified the quality of my life and my connections with those around me.

The benefits of being emotionally present toward joy are easy to see. However, it also proves beneficial during very difficult situations. So often during difficult times or decisions our thinking is skewed by past emotions coming up or fear of the future. Yet, when we can be emotionally present and focus solely on the here and now, we can make far more rational decisions. Again, we should focus less on what was and what may be, and more on what is.

None of our lives are perfect. Some of our lives can, in fact, read as nightmares. Yet, if we live with emotional presence, where we keep our pasts and futures in check, choosing to be emotionally present, moment by moment, it’s astounding how many of the moments in our lives reveal themselves as breathtakingly beautiful.

Paths of Less Resistance

By Mark E. Smith

Water is wise. When it encounters an obstacle, it doesn’t fight it. It goes around it. Water always finds the absolute path of least resistance. From a trickle to a raging river, water effortlessly finds its destination every time.

We live in a culture where fighting every adversity is our calling card. If your relationship isn’t going well, fight for it. If you’re diagnosed with a health condition, fight it. If you don’t like where you are in life, fight your way out of it. But, does all this fighting work or is there a wiser path?

We’ve all sat in traffic and seen that one driver going out of his or her mind by switching lanes, honking and acting as an agitated mess, all while going… well… nowhere. Fighting traffic only upsets the person fighting the traffic – there’s no impact on the traffic.

Many circumstances in life are like sitting in traffic. Fighting the circumstance gives us no more control or resolution. It merely makes a circumstance harder on us. Why are we fighting that which we can’t control, why are we stalling ourselves against immovable forces instead of pursuing a path of less resistance?

Now, I’m not suggesting to concede all. Of course there are circumstances where we should rise to the occasion. Yet, like water, let us be wiser in knowing when to follow paths of less resistance. I lost a dear friend to multiple sclerosis and among the lessons he taught me through his actions and outlook was that his life was lived each day as it came, not battled.

Not every adversity requires a fight. Some, in fact, are conquered by developing the wisdom to flow effortlessly with the streams of life, where paths of less resistance truly do prove the most successful force.

Let it Rain

By Mark E. Smith

Some had a limited life expectancy. Others had experienced life-changing injuries. While still others we’re born into it. All faced exceptional adversity, which made sense, as it was an expo for those with disability.

However, as I was surrounded by over 5,000 individuals that weekend facing adversity, I realized that the confidence, comfort and joy that many – not all, but many – exuded aligned with what I learned long ago: adversity dramatically improves our lives when we embrace it.

For those who haven’t experienced adversity or embraced it, they find fear in it and have sympathy toward those who live with it. For those of us who have experienced and embrace adversity know the remarkable role it serves in our lives. Our experiences have taught us that adversity shouldn’t be avoided, but actually welcomed.

See, adversity forces us to face problems and situations that are too big to resolve. In my situation, no one can change, fix or cure my cerebral palsy. And, because of that, it’s forced me to learn and grow in order to succeed in living with it. Think about what an extraordinarily fortunate situation that is to be in. Yes, we can grow without adversity, but like adding weights to a workout, adversity is a rare force that can fuel wisdom, inner-strength, understanding and perseverance, to name a few life-enhancing traits. Adversity, then, isn’t meant to restrict, but empower.

I realize that for some, adversity as empowerment is a ludicrous thought. After all, how is being seemingly down on one’s luck a positive in any way? Worse yet, when you’re down and you see someone in your situation who’s happy, that can be the perfect recipe for bitterness. But, again, if we view adversity with acceptance, we will intrinsically grow. If we embrace adversity, the challenges within will cause us to rise.

As the late singer, Prince, prepared to perform the Super Bowl half-time show, the producer called to tell him it was raining, convinced that Prince couldn’t or wouldn’t perform. Prince replied, “Can you make it rain harder?”

Prince ultimately performed among the most iconic concerts of all time, later noting that that caliber of performance could only be achieved when facing such adversity. That which he couldn’t resolve – the weather – elevated his performance.

There’s the notion in our culture that adversity is to be avoided, feared, that it’s tragic, life-detracting, that it’s asinine to even suggest welcoming it into our lives. However, that’s all gross misconception. The fact is, adversity allows us the remarkable opportunity to extract dignity from difficulty, strength from struggle, power from pain. That is, adversity allows us to not just rise in the rain, but it empowers us with the understanding that the harder it rains, the more we can rise.

Not to Worry, It Gets Worse

By Mark E. Smith

With my new book launching at this writing, I’m already thinking of my next book. I’m envisioning a children’s book titled, Psst, Really, Really Bad Things are Going to Happen to You…. It’s inspired by my six-year-old nephew who, like virtually every adult I know, is continually shocked when bad things happen to him. Therefore, I figure why not warm up kids for the fact that beyond a skinned knee or a lost Teenage Mutant Ninja Turtle doll, life is going to get really, really bad the older they get. It’s a way of curbing denial and self-victimization. It says, Kids, your life will be filled with misery and pain and disappointment, so toughen up and get used to it! It’s an inspiring life lesson through an illustrated book that truly cognizant parents can share with their children to increase their emotional quotient (E.Q.) at an impressionable developmental stage.

My main character will be little Joey, a cute, optimistic tyke who’s in for an avalanche of problems. Daddy drinks a lot since he lost his job, and Mommy has a new “friend” that she visits when she’s supposed to be at Grandma’s house. Soon, Daddy finds text messages from Mommy’s friend, and it all leads to a nasty divorce. But, moving into public housing has its perks – a playground!

As Joey gets older, he’s occasionally bullied in school, struggles with math, but gets his first girlfriend. She smokes menthols at 16, and he’ll forever connect eroticism and cigarettes, the taste of his first kiss. But, she’s unstable – the cuts on her arms letting some of it out – and she holds his heart on puppet strings, music lyrics resonating with him:

And Baby,
Its amazing Im in this maze with you.
I just cant crack your code.
One day you screaming you love me loud,
The next day you’re so cold.
One day you here, one day you there, one day you care.
You’re so unfair. Sipping from the cup,
Till it runneth over. Holy Grail.

Alas, she dumps him after a few months, and he falls into a deep, dark depression, where the taste of menthol on her lips lingers on his as the song’s lyrics play over and over in his head, sipping from the cup of despair till it runneth over.

Yet, Joey gets a $500 Oldsmobile Delta 88 Diesel and is happy – that is, till it gets stolen, and he’s back to taking the bus to work at McDonald’s, where he hates his job and hates his boss, but has a work ethic that pulls him through each evening after school, returning home, smelling like grease.

And, Joey picks up his high school grades, gets into college, meets an amazing woman, gets a job in I.T., and has two kids and a house in the suburbs. But, since having kids, his wife has lost all interest in physical intimacy, and has taken to compulsive shopping, putting the family over $100,000 in debt. And, the lyrics come back: One day you screaming you love me loud. The next day you’re so cold.

Then there’s the divorce and custody battle, the lost job. But, hey, Joey, look at the bright side: at least you’re not living in an empty, dive apartment by the railroad tracks, windows rattling as trains go by at night as you’re plagued by anxiety-induced insomnia. Oh, wait, Joey is living in an empty, dive apartment by the railroad tracks, windows rattling as trains go by at night as he’s plagued by anxiety-induced insomnia.

However, Joey is now only 46, so there’s still time – for life to get much worse. And, it will.

…Isn’t it amazing the denial and self-victimization that our culture perpetuates. It’s instilled in us from childhood, in a uniquely American mythology, that if we do everything right, we’ll end up healthy, wealthy, and happy. But, by nature, that can’t happen. Beyond our own behavior, there’s not much we can control, so why are we shocked when bad, uncontrollable things happen? From the weather to the economy to other people, so much of it’s beyond our control, so why are we surprised when it doesn’t go our way? And, in a larger question, if the only aspect of our lives that we can control is our own behavior, why do we label ourselves victims in so many cases?

The key to addressing adversity is by accepting adversity. Bad things don’t just happen to Joey, but to all of us. Drop the self-victimization, and simply recognize that adversity is part of life. It’s not a question of fair or unfair, just or unjust; rather, it’s life. Some parts of life are good, some parts are bad, but if we accept it all, that’s where we toss away bitterness and resentment, and just value what we have at any moment. For Joey, after a life of lessons, he knows that he can handle any adversity, where empty apartments aren’t ends, but beginnings.