They Just Don’t Know
A Caregivers Perspective
Blog written by Ray
I can remember early on in my marriage witnessing acts of kindness by different men caring for their disabled wives while out in public. I thought very highly of those men. I would challenge myself, saying in my head, “Do you love Marisa enough to care for her like that?” I would even wonder what life would be like, if I were in that situation? Eventually, I would conclude my thoughts with a resounding, “Absolutely!”
We don’t know what we don’t know. I did not know that those thoughts would become reality.
Several years later my wife, Marisa, would be diagnosed with Lupus and our life would begin to drastically change. We had been married for 19 years, I was 2 years removed from seminary, and 6 months into the pastorate when she received the diagnoses in 2020. Oh yeah, that is also when the world began to shut down.
Almost 2 years later, I took Marisa to a routine doctor’s appointment. That turned into her being taken to the ER and admitted for further tests. After she was admitted she ended up staying there 6 days. In those days she almost completely lost the ability to walk. When she was discharged, I carried her belongings out to the parking structure. With one hand I carried her laundry and with the other a commode, I began to think, “What does this mean?” A nurse brought her down in a wheel chair and I knew things had changed but I did not know the extent. I could remember her walking into the hospital, but now things were different.
I no longer needed to wonder what those husbands’ situation was like, I was learning first hand.
I’ve noticed a few studies that have found the likelihood of divorce increases with the occurrence of disabilities.
I am thankful that someone taught me a simple truth: “Love moves towards.”
I love my wife, diseases and all. And that makes all the difference. As a Christian man, I accept the challenge found in Ephesians 5, to love my wife as I love my own body and to nourish and cherish her as Jesus does the church.
Eph 5:28–29
“So husbands ought also to love their own wives as their own bodies. He who loves his own wife loves himself; for no one ever hated his own flesh, but nourishes and cherishes it, just as Christ also does the church.”
While I am up for this challenge I do not know if the world is.
Society may claim to be concerned for the needs of disabled people and seek to make things accessible for people with disabilities. But I have heard my wife say, “They just don’t know” a number of times. From drivers parking over handicap parking lines, or blocking handicap ramps, restaurants with not enough space for wheelchairs to travel between tables and chairs or tables too low for a wheelchair to get under.
In crowded places or stores people treat her as though unseen, her personal space is not considered. Some people stand a few inches away from her face, purses come close to hitting her face. Others lean over her and reaching for an item that is above her as if she is not there. Tall people step over her legs and others have even jumped over her if she is in their way. People crash into her wheelchair with shopping carts, sometimes out of negligence (get off your phone, please) and other times seemingly on purpose, while trying to get out of a store.
We get to the car, I help her in, and I load everything up. When I get in, often I find her with her head down wiping away tears. I tell her, “I’m sorry, babe.” She’ll say, “They just don’t know.”
Many may not know that these things and much more contribute to a voice that many disabled people hear and must fight against. The voice that says, “You should just stay at home.”
This is a challenge for me. As a Marine, I desire to protect her and her honor. So, these things can frustrate me. As a husband, I cannot lose sight of my own unique call to love my wife as I would myself and to nourish and cherish her. So, it motivates me, because I do love her.
My goal is to come alongside her with care for her individual challenges. As I become aware of these things I realize that I am given an opportunity to problem solve and remedy these situations. It is my job to make hot days cooler, cold days warmer, burdens lighter, hurdles shorter, and dark valleys more pleasant with company, plants, coffee, snacks, and laughter.
I do not want her quality of life to drop any further than what is directly associated with her chronic illness. There are things that I cannot take away or solve. So, it is my ongoing ambition to continually cultivate an environment where my bride can keep growing according to her specific qualities, skills, and interests.
Now it’s my honor to be that husband and display acts of care for my wife. Now I am the one catching others looking at me as I help my wife. And in my head, I say, “They just don’t know.”
You just do not know how much of an honor or how rewarding it is to be able to serve someone like this. Sure, nobody would choose chronic illness or disease for their spouse. But if that comes, what will you do?
I have been told that “Big doors turn on small hinges.” How do you turn what so many others would believe to be certain catastrophe into joyful loving care and a delightful marriage. It turns on the little decision of loving your wife as you would yourself and being devoted to nourishing and cherishing her.
Are things difficult? Yes, but never more difficult on the hard days than delightful on the good days.
If you knew my wife, you would know what a wonderful person she is. She is outwardly beautiful (sorry guys, I still have the prettiest girl in the room) but that doesn’t compare to the depth of her character. Interestingly, her suffering through illness has brought out special qualities that have refined her character in the way that she loves others as well as her fight to not take her time here for granted.
So, I gladly give her my care. I’m the one who’s blessed. You just don’t know.
