Happy Valentine’s Day from Handicap This Productions! Today we bring you a special guest blogger Neil Matheson, author of Daddy Bent-Legs. By sharing his personal experience with love Neil pays tribute to his late wife Elana, who sadly passed away last summer. Whether disabled or able-bodied, Neil’s words should touch you in some way. He’ll give frustrated love hunters renewed hope and let those in love gain new appreciation for said love.
“An excellent wife is the crown of her husband…” Proverbs 12:4 (NKJV)
Zach Fenell asked me to write a guest blog post for Handicap This on Valentine’s Day in honour my lovely wife Elana, who passed away on August 17th last year. With Elana’s absence, the past six months have been like an eternity. Her loss hasn’t gotten any easier. I’ve just become better at hiding it.
Of course I don’t want my guest post to focus on grief, but on love instead. The love Elana and I shared in our 12 years together. Those that have read my book, Daddy Bent-Legs and follow my own blog at www.daddybentlegs.com will know a fair bit about my wife and I already. For the folks coming in cold, however, here’s a quick recap.
I was born with cerebral palsy and have been on crutches my whole life. My wife was born with arthrogryposis, meaning her joints were fused. They never fully developed. As a result of Elana’s limitations, she had to rely on a motorized wheelchair for mobility. Not only that, my wife was also completely dependent on the help of 24/7 care aids for her personal care: dressing, grooming, toileting etc.
Elana’s physical disability was a lot more severe than my CP, obviously. Though in a great many ways, my wife wasn’t limited at all! Anybody meeting Elana for the first time would notice her wheelchair, sure. But the fact is, Elana’s beauty (both inside and out) is what usually garnered the most attention. Whatever Elana could do, she did. Nothing could stop her.
She was a dreamer who believed anything was possible.
The words “can’t” and “no” were never part of her vocabulary. If anybody ever told Elana that she probably couldn’t/shouldn’t do or try something, it simply served as inspiration to prove them wrong. Elana proved herself over and over again. She did it as an elementary school teacher for 16 years, as my wife for 10 years, and as a mother to our son Jake for almost five years.
The last four years of Elana’s life, when she was first diagnosed with lupus, were definitely hard. As if her arthrogryposis wasn’t challenge enough, her four-year battle with lupus really took its toll on her physically. But just like everything else she had done before, Elana pushed the lupus aside and forged ahead as best she could. For four years Elana carried on as a teacher, wife, and mommy. Unfortunately, the lupus eventually won. If only love and determination alone could have saved her.
Elana was beautiful and sexy, always. Yet right from the opening moments of our very first date back in December 2001, it was her infectious energy and fierce determination that really attracted me. Elana had a genuine warmth about her; a tender heart. Still, I have to be completely honest. I never thought I would end up with a disabled wife.
In truth, I never wanted to date a disabled woman simply because I thought it would prove to be far too difficult. My own disability was bad enough I thought. Trying to take on a second, more severe physical disability in someone else?? Pure insanity, surely.
And yes, for those wondering Elana held the exact same belief/attitude as me. She didn’t ever want to date a disabled guy. The full reality was Elana and I fell in love not because of our disabilities but, rather, in spite of them.
A lot of people, able-bodied or not, may never experience the love and companionship Elana and I had. Right off the bat let me say that our “disabled love,” when compared up against the able-bodied variety, was an entirely different beast. As a disabled couple Elana and I had to work a lot harder for even the simplest of things.
Sometimes the so-called ordinary everyday things were actually impossible for us. The fact is able-bodied couples take their able-bodies for granted. Holding hands while walking. Cuddling together on the sofa, sharing a bath, sex anywhere or anytime, anything spontaneous, spur-of-the-moment Elana and I could do almost none of that.
In a full 10 years of marriage, we were only able to have two baths together. Believe me, if I had my way, I would have shared well over a thousand bath times with her. And for sure, because of Elana’s 24/7 care aids, it was difficult to get true privacy and alone time whenever we wanted.
Nothing could ever be completely spontaneous. Everything had to be carefully planned/scheduled with Elana’s care aids first. Also becoming parents five years ago, parents with disabilities, added a whole new layer of challenge to our privacy, alone time, and romance too.
So yes, physical disabilities truly suck sometimes. In spite of all the obstacles and impossibilities though, I can’t help but think of Elana and I as a pair of superheroes out to conquer the world. Together we were bold, unstoppable, and unbeatable. A disabled married couple and parents to boot, we were definitely a rare breed indeed.
Going out and about with our son elicited a lot of attention, head-turning, and strange looks in public sometimes. If ever there was to be a magazine cover for “Parents with Disabilities,” without a doubt Elana and I would have been on it. We were a rock star family. It was weird and wonderful all at once. Elana used to affectionately call it “our little family” and “our little life.” I miss our little family, intact like was: Elana, Jake, & me.
Oh, how I miss it. I miss Elana, every day. Every hour of every day, I miss her. She was my joy, my daily fun. She was my partner in crime, my trusted sidekick. Particularly anything we did together out of the house and away from care aids, those were treasured moments. Just the three of us: Elana, Jake, and me. Short trips up to the grocery store, a coffee date, a quick lunch at Tim Hortons, or a relaxed family dinner at McDonald’s, all precious moments.
As Proverbs 12:4 says, Elana was an excellent wife. She was my crown. It didn’t matter to me that she couldn’t cook, couldn’t clean, and couldn’t fulfill the homemaker stereotype. None of her limitations registered with me. Elana had awesome ability where it mattered most. She was beautiful, loving, and amazing.
In the end, her few shortcomings didn’t matter. Love happened in spite of disability. At the same time, there’s no denying that it was in fact our disabilities, our disabled experience that formed and molded both of us. It’s what made Elana so determined and made me a little bit humble. Like a refiner’s fire, God shaped our persons and personalities and brought us together as one flesh, something inseparable.
Elana once told me of a time back when she was single where an able-bodied guy actually blurted out to her point-blank “Wow, you’re really beautiful. It’s too bad you’re in a wheelchair.”
I’ve also had a couple of experiences like that, myself, of course. But seriously, that guy’s loss was definitely my gain. Elana was my biggest blessing, bar none. My dearest Valentine, for all of eternity in heaven.
Reminiscing about love,