Many relational obstacles hamper marriages…hamper relationships. Issues couples often face include: finances, amount of time spent together, porn, and how to raise the children. For many couples, including Monique and I, it’s living with a disability.
I’ve spoken with others who’ve experienced issues like mine. I was born with Spina Bifida. I was born with the worst type of the defect, meaning people like me are most often crippled…people like me weren’t given the chance at life.
But I was, I was given the chance. Fact is I walked, I played sports, I climbed mountains, I rode a bicycle across the state of Iowa in a week (Search “RAGBRAI” on your preferred search engines for the details!). I did so because the messages I was given by my parents, and then by my wife, was that I was good, enough, remarkable, valuable, and capable. And yet I endure unspeakable pain, weakness, numbness, cognition issues, and embarrassing memory problems. I suffered spina bifida-related learning difficulties, and comprehension struggles. I’ve endured multiple surgeries, and multiple losses, because of all my medical issues. Losses include the loss of social time with my friends. All of the above still exist in some form today. These difficulties can be conquered, dimmed, weakened, but never bypassed.
I want you to know this…my accomplishments happened in large part because relational people in my life (parents, siblings, friends, my daughter, and my bride) asked me to participate in life, and to participate with them in life. They said, “I want to encourage you to do life well for yourself and others because you can. And I want you to do life with me well too, because I believe you can. I want you to do life with me because I am made stronger, I am safer, and life is more beautiful.” No person is an island. Every achievement happened because others pushed you, inspired you, encouraged you, helped you, worked with you, and lifted you. In the same way, marriages flourish and inspire others because two people lived relationally together in love, hope, and faith in each other. When you believe in each other’s gifts, talents, and skills, when you believe in and protect each other, and when you mutually respect and honor each other, your relationship is like the pure freshness after a spring storm. Your relationship, and each individual within your relationship, blooms in the kind of radiance seen in a field of wildflowers.
Sometimes my difficulties worsen. Imagine how those with chronic or congenital issues might negatively affect a relationship – such as mine that I’ve had with my wife for the last 22 1/2 years. You listen to me now, Monique and I are very much in love, but we haven’t got it all figured out. Our relationship relates to many relationships affected by a spouse with a disability.
Four rules for life may give you an edge towards a successful, happy relationship. I will write about the rules one at a time for the next four weeks. I hope that somehow, something you read may strengthen your relationship, make your relationship more beautiful, and help it to flourish. I pray that your relationship may be blessed.
RULE 1 For Couples with a Disabled Spouse: All Figured Out vs. Being Present
I just clued you in about this a minute ago. You can’t understand the level or affect of his or her pain. You can’t understand the embarrassment of being stared at or devalued somehow. You can’t understand comprehension difficulties. I get it. As you try to figure it out, you decide for your disabled spouse that they should sit while you cook, or clean, or shop. You decide for them that they shouldn’t participate. You decide for them that his or her pain is debilitating to the point that he or she should stay home while you do life, or that you both should stay home and do nothing. Neither gives the relationship a sense of fulfillment, or togetherness. Your actions do not always convey the language of togetherness, even though that is what is in your heart.
You’re not a bad person, and relational difficulties do not qualify you as a bad partner. But you do need education, counseling, and practice! That’s what I’m here to help you learn! You simply need to know what your actions communicate to your partner. Either you’re doing life together with your spouse, or you’re doing your life for your spouse.
There exists varied ways that an abled spouse judges against their disabled partner. I urge you to remember what you knew at some point in your history with your spouse: disabled does not necessarily mean less abled. Many of your spouses want to do life with you more fully. Many of your disabled spouses want to work with you to accomplish great things together. You don’t mean to do them wrong. You love them so much that you’d do anything for them. Point is: you only act for them. Instead, you must act with your partner.
Conceptually, partnerhood implies a spiritual element of togetherness and of presence – even oneness – with the other. For instance, therapists learn in school to be present with our clients. Presence gives the client the opportunity to participate with us in the conversation and process of therapy. Presence means we allow them to be the current expert of their world, and that we seek to understand their needs, quirks, nuances, personality, character, loves, hurts, and aspirations. Couples haven’t been trained by any professor how to be present with their spouse, or how to be relational with them. Even long lasting, loving, successful couples often struggle to be relational.
Let them understand their own pain. The disabled spouse that learns to be mindful of his or her existence, can also learn to be fruitful, driven, and purposeful. Just think how amazing your relationship could be when you get to enjoy life and experience with your very abled spouse. Thinking relationally isn’t only about our individual capability, but also the appreciation of another’s value as a person, as well. It’s at that point where you enjoy couplehood that exists as a single unit. Others will notice, and benefit from a beautiful relationship that bears fruit within your relationship, and in others as well. Fact is: our perception of experience is the value of the person’s relationship to others within the experience. Your spouse can flourish as an individual, and as a partner and single unit with you. But the reverse can also be true. Your spouse with a disability can also be hampered and devalued when you do life for them instead of with them.
Disabled adults exist with messages about themselves that they’ve believed others have communicated to them by word and action. Your disabled spouse believe messages interpreted from interactions in his or her environment. Sometimes the message is that he or she has value, viability, and capability. But sometimes the messages given are interpreted as that they’re not worth it, that they have less value than a normal person, and that they’re not as smart, or capable as a normal person. Seems harsh, but when you decide for them what they can and can’t do, the messages believed are that they’re less valuable, less capable, and less viable.
One day Monique and I were riding a bike, early in our training for our eventual ride in an event that would take us across Iowa in a week. We could hardly ride 3 miles. When we were on our first big ‘group’ ride, we were trying to make it up a big hill. I’m a better climber on hills and my wife kept stopping, so she told me to go on ahead and she’d catch up with me at the top. I told my wife that day that it didn’t matter how slow or fast we’d ride, we’d ride together or not at all. We treat life together that way as well. That’s how I want you to act towards your disabled spouse, as well. Invite him or her to participate in life with you. We, the disabled spouses, can participate in life with you. We’ll start believing that we can accomplish, that we can achieve. In fact, we might start believing we can achieve more than we, or anyone else, believed was possible for us.
We might need the help sometimes. I sometimes struggle with memory, and cognition, even though I’ve pushed through so much, including twice riding a bicycle across Iowa in a week, and including achieving two masters degrees. But I want to do life with my wife, I don’t want her to do life for me. I know you spouses mean well, and I applaud your courage. You love fiercely, and without apology, and we are more than blessed to have you in our lives. But sometimes you start to do life for your spouse, and by doing so, you’re doing life on your own, without the spouse you vowed to cherish and build a life with.
Invite your partner to do life with you. You and your disabled spouse have the unique opportunity to be entirely inspirational to others and to each other. That’s only one of the benefits of living in relationship with your disabled partner. Be present. You won’t believe the rewards of being a present and relational kind of person with your partner. Rewards include an enhanced sexual and sensual experience with your spouse!
I know that in my own relationship, we’re not perfect. Sometimes my wife doesn’t do life with me, but does it for me. Sometimes I act in ways that prove that at that moment, I am not acting as one with my bride. I am not always relational. But I have the spirit of a relational husband in my heart. We remind each other often, like we reminded each other that day on the road, with bike tires halted in the middle of a steep hill, that no matter what, we were a “together or not at all” couple.
I hope the same for you.
Jenny Herring (9/3/2015) — Lots of good points here — I like the idea of concentrating on doing life together. Another application might be couples where one is really athletic and the other is not particularly so. Instead of being competitive about it, it would seem more loving (to me, at least) to concentrate on doing the activity together.
Rick Elgersma (9/3/2015) — Jenny, you’re right. The applications to this extend far behond just being about a disability.
Joh Huizinga (9/3/2015) — Yes! Continue to explore and enhance the strong points! Take time to share the quiet times even when you’re “on the go!” Use each other’s weaknesses to explore acts of loving care; yet, never take “pride” in your humility, or disability.
Remember: “Not bad for a couple of crips, eh?” Accomplishments only count if shared, hence: together or not al all!
Rick Elgersma (9/3/2015) — I remember! Such a good application, and memory. Life is so much about the quality of one’s relationships, and the quality of your input into the relationship.
Rosie Yardley (9/3/2015) — Rick, I couldn’t agree more!!
I think this applies to all of us, no matter what our inabilities are… I think that you are sharing a great perspective on relationships that most take for granted daily. I can’t wait to read more…
Kim Hackman (9/3/2015) — I loved this! Very insightful! I found myself swapping out “disabled” with “Depressed” to fit my life’s story now and it served a great reminder to maintain perspective. Thanks!
Rick Elgersma (9/3/2015) — Kim, I found myself doing the same thing. The story is the same from the other “normal” partner’s side… It’s hard for them to navigate the wiles of disability and/or depression. They feel their only recourse is to take everything on themselves, and for the other. Ironically, though the other means well, his or her actions fractures togetherness.
Linda (9/3/2015) — Rick…We miss you both and as I told Monique today, I saw way too much of myself in this first article. Alot has changed for us in a few short years. I imagine she will be catching ypu up. Know that you all are in our thoughts and prayers. L