humility – PowerchairDiaries

On My Mother….

By Mark E. Smith

When my mother died – was it 10 years ago? – I was giving a tour of my company. My sister valiantly sat by her bedside for days. I did not.

My sister called me on my cell phone. I knew what the call was about. I’d expected it based on previous updates from her.

“I’m sorry,” I said, surrounded by people. “Are you okay?”

With that, I went on with the tour – and my life.

My relationship with my mother was long strained by the time of her death. She was a profound alcoholic while I grew up, placing my brother, sister, and me in situations that no children should be in. While in my 20s, I made every attempt to both care for her and get her treatment. By my 30s, I was burnt out, resentful, and bitter. I wanted nothing to do with her, and she, still drinking, seemingly, wanted nothing to do with me. My sister moved her to our town, and although my mother lived five minutes from me, I virtually never saw her unless she was at my sister’s by coincidence when I stopped by.

I now realize that it’s impossible to have empathy while caught up in your own pain. I had no empathy for my mother, and I literally had a lifetime of pain regarding her.

What I also understand now but didn’t comprehend then is that people like my mother typically don’t just go down such a bleak path. There’s a causation. I’ll never know the entire causation of her alcoholism, but the clues were there. She often had vocal night terrors, in which she was being violently raped. My sister and I listened to them, not knowing what to do. We asked our mother about it and she shared that they were blocked out memories, but it was likely her grandfather, a despicable man by all accounts, and possibly other men, which was quite plausible given that her mother was a heroine addict, with presumed “Johns” coming and going from the apartment. Even though I knew all of this, I never possessed the empathy to connect these horrific events to her alcoholic behavior. I was simply caught in my own hurt, then anger.

My wife and I recently went to a liquor store to buy a bottle of wine. I waited in our van. A woman came out carrying a semi-transparent bag. She appeared in her 50s, rutty complexion, with a quivering bottom lip, shakiness, and careful steps. In the bag were two, liter bottles of vodka. I recognized the bottles of vodka and the woman’s demeanor as emblematic of my mother. I shared this with my wife and she shared that the woman also had difficulty working the debit card machine. The image of the woman stuck with me.

The following day, my wife and I were at the medical center. We passed a row of those with cancer. As I rolled passed, “Margaret” was called. That was my mother’s name. Out of the corner of my eye, a woman stood up, having a dark complexion, wearing a bob wig. For a moment, in my mind, it was my mother.
I was initially just spooked by the two experiences. However, then my wife and I were at lunch and on the way out, she went to the restroom. As I waited with my own thoughts, my eyes welled up. We made it to our van before I completely fell apart, as they say.

My wife asked what was going on, and I explained that I was finally grieving the loss of my mother – with a lot of personal regret.

I’ve long said that my parents died from alcoholism. Out of hurt and anger, I believed that. However, while my father absolutely died from alcoholism, my mother ultimately did not. She, in fact, had cancer twice, and at age 59, she died of ovarian cancer. It was an eight-month struggle. And, I was not there.

The subject remains complex and different for everyone. Psychologists say that distancing yourself from an addict is vital, that codependency will destroy you. As an unknowing codependent with my mother growing up and in my 20s, I can tell you that it’s true, which is among the reasons I pulled away. Yet, psychologists don’t have it completely right. Love isn’t, nor should be all, or nothing. There’s a gray area that even applies to addicts like my mom, where, above all else, there are times when empathy trumps all. I followed the traditional psychology script and made my role in her life nothing, and in my mother’s final days, I wasn’t there. I wasn’t there.

They say that with age comes wisdom. In my case, it has also brought shame, regret, and alas, grieving.

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.

At the Heart of Special Needs

By Mark E. Smith

Annabelle was five when she came into my life. It was among my truest blessings, not just because of my own yearning to continue being a round-the-clock parent since my oldest daughter was finishing high school and going off to college, but because of the beautiful child Annabelle was. She exuded a joy and carefree zest for life that simply isn’t found in most people, even children.

Any time that we marry someone with children, it’s often said to be a “package deal,” but this union was far beyond such simple words. This was the universe bestowing me among the most precious gifts in my life – a wife and a second daughter.
We often hear of “special needs children.” In raising my oldest daughter, Emily, I always took issue with that term because every child has “special needs,” where our role as parents is to identify and meet each of our children’s needs, unique to that child. In raising Emily from birth through now graduate school, I’ve been aware of the many “special needs” she’s had along the way.

Annabelle, likewise has special needs. But, again, like all children, hers are unique. Annabelle has spina bifida and autism. She’s wicked smart and has a sense of humor that has those of us around her laughing most of the time, but she doesn’t have “typical” interpersonal interactions. There’s no I-love-you, which makes her hugging her mother or occasionally holding my hand so powerful within our hearts.

As a parent, my primary role is in working with my wife to ensure that Annabelle has everything she needs, from skilled nursing care, to a special bed, to her own play room that’s everything. Annabelle, her haven.

I didn’t realize how much Annabelle recognized me and my dedication to meeting her needs until one night in our van. Among her favorite items of engagement is her tablet, on which she watches children’s YouTube videos. She was on her tablet in our van while my wife was putting groceries in our house before we were going out again. Suddenly, Annabelle dropped her tablet in such a spot on the van floor that neither of us could seemingly get it. She was buckled in her car seat and my power chair was situated in such a way that when I backed up to get the tablet, it was under my power chair.

Annabelle became more and more upset, to a panicked degree. I realized that if I reclined my seat back, I may be able to grab the tablet. As I did so, it put me in proximity to Annabelle, and she begin patting my shoulder, repeating, “Mark! Mark! Mark!”

This moment was profound because she doesn’t address anyone by name, so her addressing me directly in her moment of desperation was both heartbreaking, as she was so upset, and breathtaking because she was reaching out to me for help.

Fortunately, I scooped up the tablet and handed it to her, crisis ended.

Annabelle’s father will rightfully always be such. However, being acknowledged as her “Mark” in her time of need was among the most heartfelt moments of my life. Indeed, there’s nothing more poignant as a parent than being there to meet our child’s “special need.”

Windless and Still

By Mark E. Smith

Life can be brutal – dehumanizing at its worst, where some of us lose so much at points, we feel that all we are is flesh and bones.

Yet, we push through it – most of us, anyway. Not all. We scrape the depths of our souls for whatever is left, and that marrow revitalizes us enough to start a comeback, following some path, yet to be totally revealed, that we hope will lead us out. It’s never linear, though, is it? We still find glimpses of hope veiled by dark patches. But, we reach and claw, and keep finding our way out.

How long does it take, we ask. Each of our journeys is different, in scale and in time. Months for some. Years for others. A lifetime for a few of us.

I think about this in bed on an August morning at the shore. My wife and youngest daughter are still asleep. I guess it’s around 7:30 am based on the last time I rolled over to check the alarm clock. No shower today. I have no desire for one.

Our daughter stirs, chirping, as we call it when she sings herself awake. I both revel in her adorable character and envy her. I often awake happy, with a tune in my head, but we adults are conditioned not to let it out. Kids are the fortunate ones – free of so many smothering social norms that would bring so much joy if we, too, could just let it out.

We all eventually get up and my wife asks me what shirt I want to wear? We banter about my insistence of a white, spread collar button down. She notes that it’s too wrinkled. I explain that it’s fine for my plans. I’m just going to park myself on the beach. Other events may transpire before or after, but I’m not concerned. A wrinkled, white button down will do. I slip it on, buttoned, over my head. As it slides down my torso, it feels crisp, cool, flowing, perfect.

I roll into the bathroom and turn on the sink’s faucet. I wet my hair with my hands, noting the grey. I run a brush through it several times and I’m good to go for the day.

A white shirt and combed hair were my only concerns, and they’re behind me. I roll over and look out our window to the beach, windless and still. And, I, too, am at total peace starting this day.

“Who’s ready for the beach?” I ask my wife and daughter.

The room is silent. We all know it’s a rhetorical question.

Recognizing Who’s Perfect

By Mark E. Smith

I truly believe that those I love are absolutely perfect. And, I tell them so, from the depth of my heart.

See, when I say that those I love are absolutely perfect to me, it doesn’t mean “perfection;” rather, it means their being true to oneself and others. Those I love aren’t without flaws or character idiosyncrasies. However, in my eyes, there’s nothing that they need to change or that I want to change about them. They’re perfect.

So often – and I’ve fallen into this trap in my past– we see all of the traits we want to change in our loved ones. At our worst, we may overlook 97% of the amazing qualities in our loved ones and fixate on the 3% that we disagree with. Even worse is when we vocalize our dislikes, especially to our loved ones, themselves. There’s few worse blows than criticism from a loved one.

I’ve also heard friends complain about their amazing spouses and children, all because they’re overlooking the greater good in them. Why bring this negativity into our lives and those we love?

The alternative is to see how perfect our loved ones truly are. Again, my wife and daughters don’t embody literal perfection – none of us do. However, there’s nothing about them that I want to change. They are… well… perfect.

This isn’t to say that we should view all by such a way. It truly must be earned. I loved my mother, but I rightfully disagreed with the life she lived as an alcoholic. I never saw her as “perfect” and I would have been insane not to have wished much of her to change. But, if we have those in our life who are remarkable individuals, what’s to change? And, why look for aspects to change?

The answer is, there’s no good reason. It’s petty and self-defeating. Our loved ones deserve better, just as we don’t need to create problems where there are no problems. Seeing those we love as rightfully “perfect” is the ultimate form of acceptance and love, and extending it to those who matter most to us elevates our relationships.

Therefore, the next time your spouse or children irk you a bit, maybe take a moment and ask yourself if it’s truly a problem or are they just earning their way into your heart as perfect?

When There are no Words

By Mark E. Smith

As a formally-trained, working writer of 25 years, I’m not going to put on any airs – this writing stuff is insanely easy. Sure, it takes heart and time. But, it’s truly just a matter of stringing words together.
However, I’ve long found that when I’m not writing, but living, I’m sometimes frustrated by the lack of words in existence that express our deepest feelings.

I often have experiences with my wife and daughters that are so deep and profound that there are no words to express them. Sure, I’ve tried, but such deep feelings escape the English vocabulary and dictionary. You’ve likely been at that point, where your feelings transcend words, where it’s like following the ocean and sky out, onto a pier, but you reach the end of the pier and the ocean and sky keep going. Maybe you’ve been in love so deeply that I love you hasn’t nearly conveyed the depth of your love. Maybe you’ve watched your child sleep and as much as you try to find words, there are none for the emotions you feel welled up inside you toward the love that you have for your child. Or, maybe you’ve had a loved one with an illness and your empathy for him or her was so deep that words couldn’t express the pain that you felt in your heart.

As a husband, father, brother, and friend, I’ve been in all of those circumstances. I am a person before I am a writer and while I could muster up swirls of sincere words, they don’t scratch the surface of the depth of love I feel in those moments. I want my wife, daughters, siblings, and friends to know the depths of my feelings for them. However, the words – there are none of such depth.

For me, the only solution I’ve found is to reach out. In those moments when words don’t exist to express the depth of my love, I keep the shortcoming to myself and cuddle up to my wife, play with our 10-year-old, or call our 21-year-old on the phone. And, it works, my depth of love conveyed in gestures, without the limitations of words.

I was on the receiving end of this process not too long ago. I have a dear friend who’s a doctor. When I was in the hospital, he came to visit and he was shocked by my grave condition. He, who is never at a loss for words, was speechless. However, he sat by my bed quietly and held my hand. I felt how deep his love was for me. Words weren’t needed.

What I’ve learned by being a person before a writer is that words aren’t the only way to express the depth of our love for others – and it’s ultimately good that language is more limited than our hearts.

Stop, Drop, and Roll

By Mark E. Smith

The major arguments that my wife and I have had, fortunately, have been few and far between. Neither of us is emotionally cut out for the type of drag-out fights that some couples routinely engage in. What we’ve learned from the major arguments we’ve had is that they left us both feeling sad and emotionally bruised – not a dynamic we wish in our marriage.

Among the reasons why our arguments were so emotionally bruising was much because of my behavior. I always ended up storming out the door with such a comment as, “You clearly married the wrong guy….”

My wife finally expressed during a nonconfrontational time that my “going to the end” during arguments scared and hurt her.

I laid on the couch one eve and questioned my own poor behavior. I did “go to the end” in hurtful ways. But, I didn’t mean to – it just happened. So, why did I do it?

I realized that rather than be in control of my emotions during those types of arguments, I was operating on emotional autopilot. See, when I was growing up, my parents routinely fought and the arguments always ended in one of them leaving, either temporarily, for long periods, or divorce (three marriages, in my mother’s case). It was scary and unsettling to me as a child, but worst of all, it ingrained in me that that’s how arguments work – that is, they go to the end.

I shared this realization with my wife and expressed that while I couldn’t promise perfection, should an argument arise, I would try my best to be aware of my response and not “go to the end.”

Fortunately for both of us and our marriage, I have stopped going to the end. What I’ve learned in this process, as I’ve done at several points throughout my adulthood, is that no matter our scars, we don’t have to live and operate on emotional autopilot. If our behavior is hurting ourselves and others, we can stop, assess, and grow. It’s really hard to do – I know, especially when behaviors, reactions, and emotions are so engrained in us. But, the rewards of having the introspection – and dare I say, courage – to question our own actions can be profoundly life changing.

When we were children, many of us were taught the key to fire safety: stop, drop, and roll. As adults, for our emotional health, maybe we need to establish a similar reaction: stop, assess, and grow.

Bullies, Critics, and Haters

By Mark E. Smith

I’m very fortunate to publish both this written blog and a YouTube video Vlog every week. The content has never overlapped until now, so I saw it fitting this week to post a video as both my blog and Vlog – on a poignant topic that, unfortunately, many of us can relate to….

Turning the Flame Back Up

By Mark E. Smith

I’m often asked what inspired me to enter the mobility industry, manufacturing power chairs? The answer, of course, is complex, with hallmarks in my life as early as age five that led to my now lifetime career.

However, there’s one pivotal point in my coming of age that especially relates, not just to my career in power chairs, but to where many of us find ourselves at midlife.

When I was 14, in the early 1980s, it was the midst of the percolating independent living movement and civil rights for those with disabilities, and I lived at the epicenter of it in the San Francisco Bay Area. As those of us with disabilities gained greater social inclusion, we needed greater power chair technology, but it didn’t exist. As a result, a homegrown, almost underground, industry evolved of “conversion kits,” where you could piece together retrofit parts to dramatically increase your power chair’s performance – and your independence.

I saved up my money and bought conversion parts for my power chair, piece by piece. I first bought faster motors, then added larger batteries, then finished by converting it from belt drive to chain drive, all strewn together with U-bolts and hose clamps. It was something your crazy uncle would fabricate in a barn. But, it worked fantastically.

That concoction of a power chair was my sanctuary. My home wasn’t safe or healthy, so when not in school, I hit the roads in my power chair, far and free. I often looked down at my black boots, watching the street’s asphalt feed beneath my power chair like a high-speed conveyor belt, propelling me to the ends of the Earth, all problems left behind. I rode for endless miles around our surrounding towns, frequently tackling San Francisco or Berkeley. The result was always the same: the incredible feeling of liberation.

I carried that feeling long into adulthood, entering the power chair industry and not just perpetually living those feelings, but hopefully helping others do the same. And, it’s been a blessing.

However, as we can find in midlife, my focus still changed. My professional, family, and community roles all wonderfully evolved more rewarding than I ever imagined. Yet, these amazing aspects also required more and more of my attention, with my times of riding a power chair purely for the passion of it becoming fewer and farther between. It wasn’t that I forgot what it was all about; rather, I simply was distracted from what originally fueled this amazing life I live.

Many of us find ourselves here, don’t we? We love our spouses, but the daily routines of the relationship become… well… routine. Or, maybe our careers that were once so inspired now seem more mired in drudgery. Why does this happen, even to the most well-meaning, responsible people?

The answer so often simply is, we forget the original spark, the original passion that got us there. When my friends confide in me with their relationship problems, I always ask what the original attraction to the partner was, and their demeanor goes from negative to positive. I do the same with friends struggling with career satisfaction, and their demeanor, too, shifts toward the positive. Life has its way of distracting us from our core passion, and the key is to gaze at our spouse or arrive at work and simply remember the feeling that sparked it all. The pilot remains lit. We just need to adjust the flame sometimes.

My wife recently sent me a text around lunchtime at work, asking what I was doing?

“Just racing around town a bit in my chair,” I replied.

And, it was awesome.

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.