Choosing a marriage partner is hard. Certainty that your loved one will treat you as an equal ought to be a given, but we all know that not every church teaches the importance or even legitimacy of egalitarian marriage, of a true partnership of equals. How could I be assured, a sick wheelchair user at thirty-eight and starting over, that this was as important to the man proposing on his knees in my kitchen as it was to me?
The answer lies in the fact that even when we were dating, Rowan would frown whenever I said, “my illness.” It worried me. When I eventually asked him why it bothered him, his answer surprised me. He said that the illness was not a part of me, that he could see past it to who I was, that I shouldn’t own it so much, nor let it own me. I was a little stunned. I’d been disabled by this chronic sickness for so long that it had begun to feel symbiotic. It was part of me, I was part of it. Everyone seemed to see my weaknesses before my strengths, even (maybe especially) at church. To hear him say otherwise, to hear that someone else could see otherwise, was very freeing.
I said yes, of course, and we’ve now been married over ten years. Still there are times when it feels impossible to separate who I am from the very real impact that the pain and exhaustion, the system failures and various symptoms have on my everyday life. But there are moments when I do get a powerful reminder of who I am, or who I could be, underneath the pain and suffering. They are often times when Rowan makes me laugh, or when I can create something, as I try to do as often as possible, sitting up to write or draw. There are times when I can see the roses that have arisen from the messy tangles and dung heaps in the garden of our lives.
My marriage to Rowan has shown me important truths about myself and equality. It’s as though the bigger picture of who I am in Christ and his body, who I am as Rowan’s wife, who I am as a whole human being, has been hidden from me. I only get tiny glimpses now and again of my potential, of what lies beneath this incapacity that’s been part of my life for so long. Without any affirmation or understanding from the church or the people around us, sick or disabled people can become despondent. We need others to treat us with equity and see us as whole people. We need encouragement and support to bring our very real gifts and callings to the table, for the benefit of all.
Rowan and I call ourselves a team. He has strengths and talents. I have things to offer too. My love is worth having, my laugh is worth hearing, and my few spoken words here and there have value. If we can learn to honor and love one another even when our needs might seem greater on one side, or when we seem (as in our case!) to take that in turns, we will find that both of us blossom and thrive in a whole new way. Surely this is how the microcosm of practicing mutuality between women and men in a marriage where one partner is disabled can provide a model for how the church can extend that same equality to those of its members who suffer in body.
Till Death Us Do Part
I’ve had myalgic encephalomyelitis or ME (sometimes known as chronic fatigue syndrome) for twenty-four years now. I count the beginning of it from when I had to stop working, but in reality I’ve not been completely well since I had the Epstein Barr virus (ME is often triggered by long-lasting viruses) thirty years ago, at age nineteen.
Most of my adult life has been affected by this neurological and immunological disease which has stopped the cells in my body from being able to produce energy correctly. Every bodily system is affected so that I have poor digestion, poor cognition, and difficulties with lymphatics, circulation, and so on. The worst part is that I cannot fight it. If I do, as I have learned on countless occasions, the symptoms get worse. I simply have to live within the limitations that my body sets. Pushing myself to try to walk ended up with my having to get a wheelchair. Attempting normal conversations ends in migraines and days of bed rest.
Rowan was well aware of how my illness would affect our lives together. Though he could not have foreseen how much I would relapse, he knew that this was a possibility we might have to face. We discussed it many times before we wed. He consistently said that it was me he was marrying and, whatever the illness did, that commitment would not change.
On our wedding day, I somehow stumbled up the aisle and back again, having to sit in a chair throughout the service, and slumped straight back into the wheelchair afterwards. I remember as Rowan gently helped me into the chariot (as we call it) at our hotel and wheeled me off to our room that there were several people looking on in consternation and amazement. They were surprised to see a bride in a wheelchair, with my white satin dress puffing up over the edges like an unruly meringue. I felt their sympathy for my brand-new husband, who couldn’t have cared less for their unwanted pity. He loved me then for who I am, not what I can or cannot do, and he loves me ten years later in the same way. It is an unexpected and much appreciated gift.
“We Somehow Hold Together”
The last few years have seen further health-related setbacks, including with Rowan’s own health. A breakdown revealed he had severe PTSD on top of the anxiety and depression we already knew about. The fallout from this in both our lives has often been difficult to bear. Night terrors, depression, and all the woes and problems that come with mental illness have made our lives problematic to say the least. In a way, we seem to have gone downhill together, and it’s hard.
Always a partnership, we continue to struggle along, each caring for the other but in very different ways. I have become so weak that I’ve been unable to leave the house (actually, rarely my bed) for the last couple of years. I cannot stand for more than a few seconds or walk more than a few paces. Rowan also struggles with many things other people take for granted. Certain routes and routines have to be kept to, coping mechanisms enforced, and reminders given. But still, he is here for me, and I for him. Down in the pit of his own despair and my weakness, we somehow hold together. We joke that we are barely one whole person between us, or that we need our own hospital wing. Yet our love for one another deepens all the time, and, in some ways, we are a stronger team than ever before.
Having to constantly affirm one another’s strengths and work around our weaknesses has given us a humility and self-awareness that is a loving, powerful, and equal partnership. It’s not been easy, and we have our moments, but communication has become, by necessity, a deeply mutual expression. After so long exploring the mechanisms of our illnesses together, we don’t have to excuse or explain our difficulties—things we can’t eat, can’t do, places we can’t go to, things we can’t deal with. These are the thorns we grapple with, as St. Paul might also have called them.
We have learned to offer one another grace instead of logic, acceptance instead of solutions. All of this has fed into our creativity as well, as an unexpected blessing, which are the blooming roses we tend. Rowan has written a great deal of beautiful, lyrical poetry, and discovered a talent for photo-composite art. I have been honing God-given skills of writing and painting. So much pain, endured in love, heartache, and the paucity (of money, friends, and opportunity) that ill-health brings have become a well of expression.
Mutuality in Disability and Marriage as a Model for the Church
Despite all my incapability, Rowan has never once deemed me less than his equal. I find this extraordinary. And yet, this is the living out of biblical equality. This kind of love that sees past sickness and disability is also the agape, or unconditional, love that Jesus modeled. It is the kind that we need to foster not only within marriage, but in wider society and the church for all people.
If the church cared about and adjusted to the problems that chronically sick, mentally ill, and disabled people have, and ministered to them with eyes and hearts that saw us for who we truly are, as equals, brothers and sisters in the Lord, then things would be very different. All the accessibility issues, cognitive issues, problems with where to put us, how to help us, and just as importantly, how to include us and use our gifts, would be seen not as work that needs to be done to comply with regulations but as an outpouring of love. This outpouring of love is what Rowan and I have found to be in our marriage based on equal partnership.
The church seems rarely to have any clue about what the sick and disabled want and need, let alone how we might be an equal blessing to the fellowship. I wonder that since “there is neither Jew nor Gentile, neither slave nor free, nor is there male and female, for you are all one in Christ Jesus” (Gal. 3:28), so too perhaps Paul might tell us that there is no difference in the way we should treat and include the healthy and the sick, the able-bodied and disabled. Everyone has something to offer and gifts from God which are there to be shared.
Within a marriage too, this equality matters. If one partner holds power, that creates a temptation to abuse that power. When Rowan has to bathe me or feed me, it is imperative to both his human dignity and mine that he is gentle and kind. As Paul says in Ephesians 5, “husbands ought to love their wives as their own bodies.” As husband and wife, we are one flesh, giving way to one another willingly in love (as Ephesians also teaches us). Unhelpful translations call it “submission,” but to me, the Greek word hypotassomenoi seems more to speak of this mutual upholding. However hard it gets to help ..the other, however frustrating or tough, biblical marriage needs to be about equality, and so does ministry in the church, whether we are talking about disability or gender equality.
It’s never easy because there are always problems, compromises, difficulties. But there is also always compassion, humility, and grace. Roses always come with thorns, it seems. But like the cross and the resurrection, you cannot have one without the other. Love entwines around both and through it all.
“We Serve, Somehow, Together”
It is not easy having a sick spouse. It is not easy being a sick spouse. There are a lot of disappointments. We’ve never been on holiday together, for instance. Careers often seem an impossibility. The children we were hoping to have never arrived. Poverty inevitably rolls up to the door now and then, like an unwelcome tide. But the kind of riches that we have are not earthly ones. Nor are they to be sniffed at by those with seemingly more. We have a love that has been refined, and as people, the suffering we have been through together has changed us. Given up to God, our marriage has become a tool to make us kinder, gentler, more compassionate, and more patient. It has also made us a better wife and a better husband.
Of all the things I value about our marriage, it is probably that Rowan sees and respects me for who I am that means the most. Like God, he looks at the heart and sees, not just the failing body, but the soul beyond and within. God, I hope, sees a willing and beloved servant. My husband sees—despite what the world tells him to—an equal, a partner, a beloved wife.
As we both age, we are already prepared for ailing health because we already live with it. Having both been pushed to the limits of ourselves and our faith by the difficulties we continue to face together, we have no illusions about the other. We know our strengths and weaknesses with a rare honesty. We have learned to love one another, not despite our weaknesses but through them. This, all by the grace of the Living God, whom we hope to continue to serve, somehow, together.
"Wild Purple" painting by Keren Dibbens-Wyatt
Read "A Rose," Rowan's poem about Keren, his wife.