Facing illness – 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.

Crystal Glasses of Ginger Ale

By Mark E. Smith

By the time I was vomiting uncontrollably in the shower that eve, I felt it a mixed blessing. On the one hand, I made it through a day that encompassed a media feature of my company, and I suspect vomiting in front of the press and my CEO may have influenced the story a bit. The press is fickle that way.

On the other hand, I was perplexed how I became so sick, so fast? And, so, as my wife brought me a baker’s bowl, so I could make it from the shower to the bed, vomiting on the move, I sought her expertise. After all, she’s a skilled medical professional – or, at least a high-end optician. If you can’t trust an optician to advise you on stomach viruses, who can you trust? OK, you can’t trust an optician at all for medical advice. While my wife could fit me for awesome eye wear, she was likewise clueless as as to why I was suddenly so sick?

Once in bed, things got worse. In my 45 years of having cerebral palsy, I’ve learned an invaluable lesson: the one downside to not being able to walk is not being able to walk. And, so as I felt my condition worsening, unable to sprint to the bathroom, I broke out my secret weapon: Depends. But, here’s the thing – as much as Depends are marketed as “underwear,” they’re diapers, poofy, odd diapers, sans the tape closure tabs. So, there I sat in bed – 1 am, 2 am, 3 am, 4 am – wearing a diaper while vomiting uncontrollably all night into a baker’s bowl. Some might find that embarrassing, but I found it an ingenious evolutionary system of survival. Prehistoric man and his tools had nothing on me – I had Depends and a baker’s bowl.

By the next day, I was gut-wrenching sick, vomiting ad nauseam, to painful dry heaves beyond anything I’d ever experienced. On the upside, it gives you one heck of an ab workout. I see dry-heave gyms catching on. But, I was getting sicker and sicker.

Now, here’s the brilliance of medical science: when you’re vomiting uncontrollably, they tell you to drink lots of clear fluids – all so that you can promptly vomit them back up. Gatorade in, Gatorade out. Water in, water out. It’s like I was the opposite of a waste water treatment plant, putting perfectly good fluids in me only to vomit them back up as bio hazard.

Finally, I settled on ginger ale. No, it wasn’t anymore effective than the other liquids. However, there was an elegance to it. Darling, won’t you please bring me a glass of ginger ale, with ice, in our finest crystal? And, that my beautiful wife did. Was I a sick, pathetic mess? Absolutely. I was in bed, wearing a diaper, vomiting into a baker’s bowl! But, the crystal glasses of ginger ale added a certain class to it all – even as I vomited every last drop. I was a hint of a British gentleman – vomiting, wearing a diaper.

After a few days, my wife wisely wanted to call an ambulance. I was only getting worse, unable to eat in days, and arguably pushing the line toward dangerous dehydration. My wife knew best. However, I’ve long trusted a slightly off-kilter Italian – my doctor. He’s long lectured me on trying to stay out of the hospital. English is his second language, so I don’t always know what he’s saying, but his theory is something to the effect of: Hospitals are full of viruses. You eat bad fruit, go to the E.R., touch something, get a flesh-eating bacteria, and, boom, you die! Yes, he’s prone to slippery-slope exaggeration, but has his points.

Still I followed my doctor’s advice and opted to stay in bed, wearing diapers, and vomiting the finest ginger ale from crystal glasses that money can buy – $1.79 per 2-liter bottle, imported from Canada.

Out of boredom one eve, I lay watching CNN political coverage. I was already sick, so the dynamics of the 2016 political race technically couldn’t make me any sicker. Governor John Kasich told the story of confiding in former governor Arnold Schwarzenegger that he didn’t know how to handle personal attacks? Schwarzenegger replied with classic Arnold advice, “Enjoy the punishment.”

Schwarzenegger is no philosopher, but he was on to something. We have choices in our lives. We can be bitter and resentful, or find some sense of gratitude, no matter how bleak the circumstance. Yes, I was sick to a troubling level, but at least I was sipping – and vomiting – ginger ale from a fine crystal glass.