Ivan: Spouses are called to care for one another, but things get really interesting when a severe, life-threatening accident gets thrown into the mix. I was 23 when a man ran a red light and hit my wife at 40 mph as she was walking in a crosswalk (there was a security camera at the intersection). Grace was also 23. “But we were so young!” Is there ever an “appropriate” time to become a caregiver for one’s spouse? There is something wholesome and sacred about all husbands and wives who stay together and care for each other till the end. I pray that God will give me the privilege of taking care of Grace for decades to come. That being said, you don’t usually think of couples in their 20’s operating under a “victim-caregiver” dynamic. Grace and I are very aware that we are not the only newly married couple to face something unexpected and devastating. We share our story in the hope that whoever reads our words may be encouraged.
What is it like being a caregiver for your spouse? It’s hard. It’s hard because everyone has 24 hours in a day and a finite amount of energy with which to take care of the many things that need to be taken care of in a day. Usually the demands of work and family life are enough to leave people feeling exhausted. Adding serious medical needs doesn’t help. Somehow you have to keep being employed and keep meeting “normal” social and relational demands while also helping your spouse. The spouse is understandably unable to do as much work (professionally and at home) as before, so the caregiver is responsible to make up the difference.
In addition, the spouse being helped is aware that “if it weren’t for them” their spouse wouldn’t need to be a caregiver. This can create feelings of frustration both at the situation itself and its effect on the caregiver. The caregiver also needs to be sensitive about how to “cope” with the exhaustion and frustration arising from the situation, because it would be easy to inadvertently make the “victim” feel responsible (even though in our case Grace is 100% blameless for what happened).
Sometimes I feel like there is a train called the “train of life,” and a major accident has derailed it. But somehow the train is still expected to function “as usual” because “life goes on.” How do you get the train back on its rails?
You push it back on to the rails and then you push it until the engine slowly comes back to life. Then you keep pushing.
Why do all this? Sadly, many don’t. Many give up and leave because “this wasn’t what they signed up for.” And if we’re honest, that reason (or excuse) makes sense. Then how do we account for that voice that says, “That’s not how it should be! Stay for love…”
“No one has greater love than this, that someone would lay down his life for his friends.” John 15:13.
I never know when the next seizure will come. When they do inevitably come–because we can’t cocoon Grace in a life completely insulated from any chance encounters with light triggers or fatigue triggers–I have no power to make them stop. If I’m present with Grace and not at work or someplace else, I literally just sit there next to her and wait for the seizure(s) to stop. It feels completely helpless. People don’t like to feel helpless. But it’s part of my calling now to care for Grace.
There was a time last year when I worked many hours to make up for the income Grace lost because she could no longer work, and I was finishing my master’s degree, and I would come home, administer a blood-thinner shot in Grace’s arm because her knees were broken and she was stuck in a wheelchair and we didn’t want potentially fatal blood clots to form, then I would help Grace with her self-care, then I would clean her G-tube which had been infected and had developed pressure sores from being installed inappropriately, then I would sleep, wake up, repeat. But that was part of my calling to care for Grace.
Grace and I miss going to church (we hope we can go back to trying to go to church again, once Grace has rested up and recovered after our recent hospitalization). We miss the fact that she hasn’t been able to attend events at VCS or meet my students and coworkers. We miss the fact that (unlike many of our peers) we are not able to travel freely abroad, or even to Southern California, or even around town. Or eat out. Even watching TV sitcoms (Grace introduced me to Seinfeld a while back and my life hasn’t been the same since) is risky, because light triggers could come onscreen at any time (Grace has been triggered during Seinfeld episodes, fyi…). Movies are also risky. Walking outside our front door feels like leaving Rivendell to walk to Mordor. But even inside our apartment she’s not safe from triggers, so it’s not quite an elven sanctuary.
I’m rambling, but you get my point. Peace of mind is hard to come by. I would have crumbled long ago were it not for my Foundation. “On Christ the solid rock I stand, all other ground is sinking sand.”
“In Christ alone my hope is found,
He is my light, my strength, my song
This Cornerstone, this solid Ground
Firm through the fiercest drought and storm.
What heights of love, what depths of peace
When fears are stilled, when strivings cease
My Comforter, my All in All
Here in the love of Christ I stand.”
“Turn your eyes upon Jesus
Look full, in his wonderful face
And the things of earth will grow strangely dim
In the light of his glory and grace.”
Only God is strong enough, kind enough, patient enough, faithful enough, constant enough, to face life’s biggest challenges. I know I’m not. I pray that all of us would come to the only Source of true Life as difficulties keep coming our way. Our Shepherd walks with us through the darkest valleys…and leads us through into the light.
“Surely your goodness and love will follow me
all the days of my life,
and I will dwell in the house of the Lord
forever.” Psalm 23:6
Soli Deo Gloria.