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.

Hello, I’m Johnny Cash

By Mark E. Smith

Among the most difficult clinical mental conditions to diagnose is delusional disorder. The reason why it’s so difficult to clinically diagnosis is because it doesn’t manifest itself as other conditions do. There are no hallucinations, you don’t hear voices, and you remain content, sensible, and logical. The question, then is, where is the disorder?

This is the tricky part. Clinically speaking, extreme forms of jealousy or grandiose thoughts are emblematic of delusional disorder. However, it still becomes tough to diagnose, doesn’t it? Most of us have felt unfounded jealousy in our lives at some point if we’re honest, and grandiose thoughts often fuel success. In this way, it’s only to the very extremes that this state of mind becomes diagnosable.

I might be among the few who are diagnosable. See, I believe that I control my own joy, which goes against the way we culturally define what creates joy. We typically base joy on external forces bringing “good” into our lives. We logically don’t feel joy during adversity. Yet, in my possible delusional disorder, I often find joy even during the toughest times of my life.
Among the gravest moments I’ve experienced was awaking with a tracheotomy, on a ventilator, unable to speak, due to respiratory failure following a surgery. To make all worse, my cerebral palsy doesn’t allow me to physically write. I was suddenly locked inside my body with virtually no ability to communicate.

As the days passed, I found the circumstance both horrifying and hilarious. On the one hand, I couldn’t communicate beyond gestures, which is a disturbing reality. You feel as though you’ve lost everything. On the other hand, seeing my family try to read my lips with little avail was a funny sight to witness. As a result, I mouthed the most obnoxious phrases, and amused myself to no end as they tried to figure out what I said. My sister was the most fun to toy with. She shares my sense of humor and joy, and she laughed hysterically at not being able to understand me and I laughed at her for not knowing the ridiculous words I was secretly uttering. It was the two of us in my hospital room, laughing hysterically during a very serious health crisis. But, there we were, finding joy.

After a week or so, it was time to learn to speak with my trach. There’s a small cap that goes on and it allows vocalization. As the speech therapist explained to my family and me, it takes days or weeks to master speaking with a trach, that I couldn’t expect to speak right away.

With the cap in place, surrounded by family, nurses, and the speech therapist, I had an audience. I took a deep breath and uttered the first words that came to heart: Hello, I’m Johnny Cash. The words came out deep and clear.

It was the way Johnny Cash began every concert and nothing seemed more fitting or joyful for me to say in the moment, per my possibly delusional mind.

Everyone expressed a combination of tears and laughter. I didn’t plan on speaking those words as my first, but the silliness and joy just came out.

I’ve found myself in such situations throughout my life, and as those around me will tell you, joy remains. I’ve had my frustrated times and dark days, of course. But, in general I live with a sense of joy, one that nothing can take from me. You can take my voice, but not my joy!

I suppose we could debate whether I have diagnosable delusional disorder. What I know I have is a specific perspective toward our emotions. We have two choices in the face of any adversity: we can allow it to pull us down or we can choose not to allow it to steal our joy. I strive to default to joy.

I say that if being joyful even during the tough stuff is delusional disorder, we should all be fortunate to have such a condition.

Trusting the Pathway

path

By Mark E. Smith

In college, I took a course, The Bible as Literature. While I understand that such a course’s secular treatment of a sacred text may not sit well with all, it did make the Bible accessible to many students unfamiliar with the writings. For me, as one who was raised Catholic, the class converted what I’d only known as a child as a daunting, abstract text and allowed me to see relevance in its words to my own life.

Recently, Romans 5 came up in conversation, and when I looked it up, eying it from both spiritual and secular perspectives, I was touched by a verse that I recognized of a profound truth:

…We also glory in our sufferings, because we know that suffering produces perseverance;  perseverance, character; and character, hope. (Romans 5:2-4)

Think about that. Suffering leads to perseverance, which builds character, which leads to hope. In facing life’s trials and tribulations, I’ve realized this is the exact path that many of us have followed during extreme adversity. Suffering brings out our perseverance, which builds our character and results in hope.

What is most powerful about recognizing this intrinsic process is that it adds tremendous comfort in the face of adversity. I don’t know why this is happening, but I know where it’s leading me.

I spoke with my father-in-law, who’s a minister, and he made a relatable comment that boils down to, we may not like the process at times, but the reason behind it and the outcome are worth it.

At points in our lives, we’re going to question adversity and suffering. Having an answer as to its purpose can serve as a tremendous coping mechanism. Or, maybe when we reach that insight, it’s simply perseverance, character, and hope kicking in – right on queue.

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.

Sailing in all Seas

By Mark E. Smith

I heard a doctor say, “Wellness is the temporary state when we’re in-between illnesses.”

On the surface, it sounds cynical. However, there’s a truth to it, both in medicine and in life.

No matter who you are, life is a constant ebb and flow of circumstances. We can be just as assured of good times as we can be of bad times. Most often, life is a confusing mixture of both. Just as we get ahead, we experience a setback. Just as we’re facing defeat, we’re uplifted. And, much of it seems inexplicable in reason and timing.

What can frustrate us even more is the never-ending chain of down times, when it appears that no matter how hard we try to ensure all is well, something always goes wrong. The fact is, we can never totally isolate ourselves from life’s tougher times. Money can help us better absorb difficulties, but not so much prevent them. In this way, peaks and valleys aren’t unique to any one of us, but intrinsic to life itself.

I’ve had a lot of extreme highs and extreme lows in my life. As one who’s tried to avoid the lows by taking every possible precaution in cases – with little success – I’ve found myself frustrated with the fact that, no matter what, life drags us through tough stuff from time to time. Yet, I’ve found a way to soften the blows a bit.

I had a fantastic talk with a dear family friend over dinner in Boston a while back. We got into a theological discussion about why does God allow bad things happen to good people? (I know that sounds cliché, but stick with me.) My friend replied, “So, are we to only value God when he gives us what we want?”

Her question also struck me me in a secular way: Are we to only value our life when it goes how we wish?

For me, finding gratitude for life itself – regardless of the circumstances – has been the ultimate key to moving through some very tough times. I’m not perfect at it, but when I stop separating the so-called good and bad, and focus on gratitude for life in its entirety, it’s hard to stay in a funk or get too upset. Similarly, by not hyper-emphasizing good times, it lessens the chances of feeling wronged when the tide changes – as it always does.

What I’ve learned is that life is far more fulfilling when we don’t place too much weight on the good versus the bad, but on finding gratitude for all of life. On our journeys, we’re going to experience calm seas and wicked storms. Let us not get hung up on either, but relish the journey, itself.

Don’t be Fooled by a Cereal Box

By Mark E. Smith

Cereal sales have been on the decline. I’m okay with that – especially, Wheaties. I should clarify, I have nothing against the cereal, itself. In fact, I rather like it. However, the Wheaties box has been synonymous with having the spirit of a champion, regardless of the adversity one faces, and it propagates a flawed mindset.

More and more, we seem a just-get-over-it culture. No matter how extreme an adversity we face, many feel that we should just get over it. And, if we can, we’re celebrated for it, our picture on a metaphorical Wheaties box.

Yet, it completely contradicts how most of us move through adversity in healthy ways. Addressing adversity is progressive movement, but it’s not without personal peril. Ideally, we do make progress every day. But, it’s unrealistic to expect us not to have bad days and experience real emotions – negative and painful – in the process. Life can get brutal, and in those moments, it’s natural to feel beat up and defeated. In fact, it’s vital. We can’t begin getting up unless we’re willing to admit that we’ve been knocked down.

During these times, we need a specific type of person with us. It’s neither someone who lays beside us in defeat, nor someone who tells us to just get over it. Rather, we need someone who understands that the path through adversity is progressive, but not linear. We need someone who knows how brutal life can feel, that it should in those moments, but also knows the importance of moving through them.

Put simply, during the toughest times in our lives, we need those around us who understand that facing adversity isn’t summarized on a Wheaties box.