There’s a moment in one’s life when the individual wonders where their life went…the same is for a family where one of the spouses, even one of the children, has a disability. You well know by now that I have Spina Bifida…I was born with the most dangerous level of the defect, Spina Bifida myelomeningocele. What this means to you is that I’ve spent a great many days at the doctor’s office, many days in the hospital, many days in recovery of one sort or another, and years of my life spent in severe pain, muscle imbalances, and neuro-bladder. Sometimes my pain is such that going out of the house for entertainment purposes sounds more like work than play. Sounds like my life of meds, and medical staff, might not leave much time for love. Truth is I’ve got a business to start, and I have to work where I work part-time, and I’ve got to get this article done, and I’ve got to…we’re full of “got to’s,” aren’t we? We’re not unlike others with equally nutzo schedules.
But we’re trying to understand life as a disabled husband, life as a couple, and life as a family where one has a disability. We’ve tossed around PC terms such as “Other Abled,” “Specially Abled,” or “Differently Abled.” Spina Bifida can be significantly disabling…so disability works. I was specially abled, this is true. I was imbibed by determinism. That didn’t mean I didn’t complain, or try to be more abled than I was.
There were days – quite a few days – starting at a young age when I thought I could fool others into believing I was not only a miracle, but I was also impossibly gifted. You could’ve been happy the way I was. I was certainly honing my sense of determination. You could’ve been inspired enough. God could’ve found you inspired just the way I was. There was the day when I, with casts on my legs, decided to climb scaffolding on the outside of my house up to the second floor where dad was painting, or putting up siding (I can’t remember all the details), but I wanted to help, and the suggestion came to me that I couldn’t help do the work because I was supposed to be laid up after surgery. Pshaw! Then there was my manual transmission card, in which I learned to drive using my left foot only. Where was the casted right leg/foot? Stretched out over the passenger seat…
My story was pretty cool the way it was. But of course I had to have golfed a 31 on the back nine. Oh, and yep (nope), I slid down the fire-pole on the field trip in kindergarten. I would’ve gotten away with that one had Mrs. Stryle and Mom not had a chance conversation about that field trip.
Yep, I’ve got a sweet life, full of all kinds of good things. My bride and I have climbed mountains, ridden bicycles a long ways at a time, climbed the Manitou Incline, and climbed the highest cathedral in Europe…maybe in the world, I’m not sure (Ulm Cathedral in Ulm, Germany). I don’t do these things only for my benefit or even our benefit…being a together-or-not-at-all couple, we do it for each other; or even others, maybe. I do what I can… we do what we’re able to do.
But let’s not leave the things I can do only to the big things, shall we?
Truth is I love my bride. She loves me like…have you ever seen the northern lights stretch across the sky, when stretching seemed to open a nest of color that can only be compared to the joy of children, or a wedding day? Do you remember seeing a giant orange moon in the sky, crested by a sea of midnight blue? Have you ever seen a bed of meadow flowers that you can’t quite leave? I have. I’ve seen the moon and the sun kiss at the tip of the mountains before one heads to bed, and the other headed to work. I’ve seen whales break the glassed seas. I’ve seen the things that’ll make a soul pause, and linger, and be refreshed, like a splash of cold water after a long day working in the sun. That’s how I’m loved by her.
We get creative. I told you that by now you’d have a picture of what it takes. You’ve learned about our creativity. We create pieces of bite-sized love. Sometimes I can’t do love on my feet, but I can create a mulu. We make micro-dates by her sitting in my lap while we roll in the seat of my wheelchair throughout the store. Sometimes I might be exhausted from pain, but a quick eskimo kiss (rubbing our noses back and forth across each other’s nose) is our moment to find each other in our private, and very safe place. These are our scaffolding moments, the moments one might not have thought we’d want to do considering the moment.
Rule #3 – Scaffold your relationship – Create scaffolding moments… scaffolding dates.
Scaffolding moments. I have to admit, climbing to the top of my house via scaffolding and the use of two arms and no legs was pretty fun. I actually don’t remember if I thought I was pretty awesome for pulling that off. I know my parents shook their heads and enjoyed the moment. What I do remember is that there I was with my dad, a moment I would not have had without my very first scaffolding moment. Scaffolding moments are a way we can be together or not at all.
Scaffolding dates. Just like the day somewhere in the mid ’80’s, legs weren’t always necessary…well, mostly anyway. I’ve sat out on the front porch, or back patio, with my wife for some time to finish off a glass or two of wine. I love the sound of her voice, but what if you were out on the porch and you took ten minutes to make a list of all the sounds you heard in that span of time. You’d be amazed by list you’ve made. Maybe there were unique bird calls, unique dog barks, the scrape of feet along the sidewalk…I don’t know what your list will look like, but scaffolding dates are the unique creations you make together, that might make you laugh, cry, sigh, or all three. One couple we know, made three paintings made of hopes and dreams. The two outside paintings were each person’s favorite words and individual hopes and dreams. The middle painting was one they did together. Together they wrote words, hopes, and dreams that mattered to them, that they vowed would be their passion together. They joined the three paintings, and hung them side by side by side on the wall. Turned out that the vision they noticed on their wall was the evident notion of togetherness for all to see, even through their individual hopes and dreams. Scaffolding dates are the activities you decide together that might even give others pause.
We stay inspired. We sometimes get bogged down in life, I admit. We’re not a super couple or anything. Sometimes we hit the town, and do a date up right. We sometimes simply do dinner and a movie. We can’t talk, or see each other in a movie theater, but we can make out of course, that’s always nice (my brain just did a spontaneous YIPPEEEEE! at the notion of making out, but I digress), and making out is a communication all on it’s own. But think twice before you opt for dinner and a movie because a couple might be in some danger of falling into the rigors of the mundane at the notion of dinner and a movie. A scaffolding moment, or date, is one where you break the crust of your senses of creativity to do something you didn’t know you could do. Parents are notorious for losing their creativity. They won’t travel, they won’t leave, they won’t trust, they will worry, they won’t ask…unfortunately that list goes on. Not to worry parents, there’s a list for couples when one spouse is handicapped too. I find reasons to stop doing…my primary is pain, but sometimes I just don’t want to think that hard. Scaffolding moments and dates are devised by people who know that being actively – and creatively – intimate improves the shape of their relationship. These are the people who look at dates and moments as a giddy, amazing, fun, funny, determined, and somewhat mischievous times and moments that can be accomplished rather than simply had.
Somewhere in your minds picture a young boy without the use of legs who sees scaffolding as an opportunity. And imagine the surprise, pride, and delight of a dad who’s son pops over the top in such a way that had not yet been imagined by him, just to be with his dad, and just so he can help.
I’ve always been the guy who could participate. Participation took creativity, practice, and determination.
I’m a handicapped husband. Participation in my marriage takes creativity, practice, and determination. Even still, stretches of my life included depression, laziness of the mind, and lack of participation. I let spina bifida be my life-mate instead of my wife. Sometimes she doesn’t allow me to participate, thinking she’s doing me favors by taking over. I suppose I hope we get it all right some day, but getting it wrong sometimes pushes us to the crux of our intimacy, and to the base of the scaffold.
This series is about being in a marriage with a person who’s handicapped, and conversely being in a marriage with a person who’s not. I’m a physically capable man, but my wife can last longer at any activity than I can. I sometimes fight the urge to see myself as less-than, because I compare sometimes. I can’t unite when I compare, because in those moments I don’t compare our strengths and rejoice at how good we are together. More often, we’re just good together, and more often we’re fantastic. She’s supportive, and encouraging. She wants my best, and expects my best. I could not be more fortunate because she sees me for me, and knows what I can do, and knows what we’ve done, and what we can do. We’re not always good, but even when we’re a little out of it, we still know how to rock the scaffold. The “day of the scaffold” was the day I knew that I didn’t need to overcome my disability. I simply needed to do what I could with what I had…what I could…not 10% of what I could. The couple friend of ours, the ones that created their paintings together, learned in a single moment what it was not only to be a together-or-not-at-all couple, but also to exist doing what they could. They’re a scaffold couple. Monique and I are a scaffold couple. Even writing this series is a scaffold moment for me. I have a spina bifida related concentration deficiency, remember? I yearn and strive for what I can.
I know you can too.
But let me tell you…my daughter is a do what she can woman too. She’s known days of adversity, and through it has gained so much with which to give. And we are with her. We’re a do what we can family. We might not always do it like you would, but we’re a scaffold family. She’s a remarkable woman, and her mom and I will spend our days being a scaffold parents with our daughter. Scaffolding isn’t only the mind of a couple, but of a family too. We have family dates every Wednesday. Sometimes we watch something together, but we’re not a shut-up-and-watch family. We talk, and guess the outcomes, and sing, and yes sometimes even mock the show or movie. That’s how we remain a talking family. We get smarter at guessing mysteries too, in fact we’re scary good sometimes. So watching something on Netflix isn’t merely a watching experience, it’s a scaffold experience. You have that in you parents. You have it in you to be a scaffold parent, and a scaffold couple.
Anyway, this week’s challenge for you: think creatively… what scaffold can you try with your spouse? What is an activity that you can plan, and do together that breaks the normal ‘date’ mold? Oh, and try to have dates regularly. Not just a ‘well its (y)our birthday/anniversary/special event day so we should go out an do something because others expect us to’ date. A ‘I want to connect with you, I want to spend time with you, I want to create a memory with you on a regular basis’ type of date. Talk about that and put it on a calendar… as a recurrent event.