Chronic illness and pain really stink (or insert your own adjective here). For the person suffering, it’s rough. It’s hard to find empathy from others because to find empathy means you have to share about how you really feel, and that means opening yourself up to possible pity, unwanted advice, or criticism. And when you find people who are good listeners, you risk wearing them out. So, if you’ve been at this for a while, you’re cautious. You’ve lost people. But at least we know we need people. (I know this is a strange way to start out a post on Valentine’s day but bear with me.)
Today I want to talk about the others. Our others.
For the spouse or significant other of the person with chronic illness, I want to tell you that the road is hard and isolating. Possibly just as much as the sufferer. I want to acknowledge your pain.
When illness hits one of you, the other often goes unnoticed. People ask how the ill partner is and if they need anything, etc. What those outside the relationship (and sometimes the others themselves) don’t realize is that, as a couple, both of you are hurting. All the times you have found empathy? Your other is not even looking for it because they don’t realize they need it. But they do.
This wasn’t what your husband or wife—your other—signed up for. It’s in the vows—for better or for worse. When you’re newly married, the idea of worse isn’t on the radar. Forgive me for speaking in generalities. There are people who marry someone with a current illness or disability and are a bit more prepared. I say a bit because our imaginations just can’t do it justice: watching the one you love suffer is hard work. It’s painful.
There’s a certain amount of helplessness that occurs when your spouse becomes permanently hurt or ill and you can’t do anything about it. You can’t make them well, and you can’t take away their pain. This doesn’t change your desire to do so, though. You begin a fight you don’t know how to win. That you can’t actually win. Sorry.
It’s maddening and frustrating. It’s agonizing and life-altering. You get angry. Rightly so. It’s not fair. Acceptance comes and goes like the tides. There’s one thing no one seems to expect, though: Grief.
Grief is a daily part of the illness process for the sick/suffering—mourning who you aren’t anymore, learning to adjust to the new normal, the new (less improved) you. It goes up and down like a roller coaster. One day you are managing, at the top, looking above the clouds, and the next you are building speed toward the bottom that’s engulfed in fog, not sure if you’re going to stop before you hit something.
It is also this way for your other.
You as a couple can’t do the things you used to. Long strolls, spontaneous events, and big days packed with activities are done. It used to be about the two of you (and possibly your kids). Now, it’s entirely about one of you and deciding on what can they manage. Doing things in succession is in the past. Maybe one or two hours, or a half of a day is possible, but long weekends of jumping from one thing to another are out. You, our other, are not now the equal partner, but the caregiver.
This is a huge shift. And it hurts.
Unless you’re practiced in being self-sacrificing, it might become unbearable. As Christians, my husband and I count on the Lord giving us extra peace and strength and joy. The Holy Spirit has an unending supply. On our best days, we remember to pray and ask. On our worst? I’ll just say it, those are the worst.
My message is this: It’s important for us to realize that our significant other is suffering, too. Differently, but they are on a similar path that intersects yours. It weaves back and forth across your way, under you, around you in a pattern that reveals pain and love and hope and all that in between.
So while you need time to grieve, give your other the space to do so, too. It’s real and necessary. It takes patience and love and forgiveness. For both of you. Every day. The good ones and the rough ones. You’re really in this together. Talk to each other. Share your disappointments. Find your new path. And then find another new path. And another. Don’t give up on each other. What is meant to be a curse, can turn into a blessing that ties you closer together than you ever imagined you could be with another person. It’s not easy. But it’s true.
To my other, my sweet husband: You are not forgotten. I see you. I see your sacrifices. I see the worry in your eyes. I see your pain. You are appreciated and I’m so grateful. I’m blessed that I can face this with you. You are by my side—and on tough days at my back pushing my wheelchair. Even so, you never make me feel disabled. You never make me feel less. You see me as I used to be, and through your eyes, I see myself in a new light. I don’t know how you do that, but you do. I love you. Happy Valentine’s day.Read More
If you’re like me, the American dream was drilled into your head through television. That dream is slightly askew these days, but I think it’s still holding fast in our psyches. It goes something like this: I’m going to marry the person of my dreams. We’re going to live happily ever after (whatever happily means by your definition). We will be married forever and die at a ripe old age, painlessly, holding hands in our sleep. Marriage is all about love and romance and passion and having my needs met. Right?
It doesn’t include driving your spouse to the hospital at 2 AM because he can’t breathe, and then sleeping in the hospital parking lot in the car with your baby because you can’t trust yourself to drive home. It doesn’t include holding your spouse’s head while he or she vomits, or wiping up the floor because they’ve missed the toilet. It doesn’t include watching your spouse fade from the person they were because of chronic illness a good forty years ahead of schedule due to a genetic disease. It doesn’t include going into debt to pay for medications and specialists. Or watching them spend thirty plus hours of each week curled in a chair because their life-saving medication makes them feel awful. Or surgery. Or accidents. Or any of those uncomfortable things that reminds us this life can be one trial after another.
But it should. I feel like petitioning every premarital counselor out there and asking them to change their quizzes. What will you do if you can’t take that trip you’ve always wanted to take? What will you do when your spouse becomes disabled (we all seem to at one point or another), or if your spouse gets cancer and loses a body part or goes bald? If they lose their minds to disease? What will you do if your loved one is suffering? When you need to bathe them or change them? Will you leave because you can’t bear to watch them suffer? Or because your needs aren’t being met and they’ve become a burden (whatever burden means by your definition)? I sure hope not.
This blog post honors those who stay.
The world says self, but God’s Word says sacrifice. God created marriage as a sacrificial covenant. It’s not just a safe place to have kids. It’s not just an expensive party where your friends and family come wish you well and and give you awesome presents (we got 12 clocks…is there a hidden meaning in that?). Or about tax write-offs (and thanks to the government, that’s about to end anyway!). Contrary to popular belief, it’s about loving that other person sacrificially. It’s about putting them and their needs before yours. It’s not about you, it’s about them.
So. If you have stayed when it was messy, painful, heartbreaking, perspective shifting, expensive, inconvenient, dream-killing, hard, sleepless, tiresome: thank you. You mean the world to your spouse who feels like a burden, who wishes they were different or circumstances were different. You are showing them and the world what it means to die to self. You are reflecting the sacrificial love of God to your spouse, your kids, your friends–even strangers. And in that, the sacrifice Jesus made for us all.
Thanks for staying.
On Monday January 5th, Maxine Marsolini and Jeannie St. John Taylor interviewed me for their radio program, The River. If you missed the live broadcast you can listen to it below. We chatted about MACY, healing fiction, marriage, forgiveness, challenges and hope. I had a wonderful time. Thanks to Maxine and Jeannie for being such wonderful hosts!
What have you been up to lately? We’ve been very busy. Let’s see, where to begin? I got the manuscript of my latest novel, Macy, turned in to my publisher, and spent the following days celebrating my daughter’s 16th and my son’s 11th birthdays…and worked on our M.E.P (our marriage enrichment project read IKEA shelving unit—see lovely photo on your left).
How hard can that be, you ask? Seriously, IKEA has great instructions, and it’s pretty simple…on paper. Except, did you know you have to drill the drawer front handles yourself? Yeah. That was fun, getting them all lined up (just be glad you weren’t here). Thankfully, my husband came equipped with a math function of which I am sorely lacking. Five, er…six…er…eight ruined drawer fronts later, there you have it! Flawless! Mostly.
It’s beautiful, and it’s something we’ve wanted to do for years and years. All our homeschool stuff is (soon to be) organized into ONE place (I know, right??!). “Mom, where’s the ____?” My “In any one of four places,” answer has changed to “Right there!” Well, it will be as soon as I get everything moved. But then—perfection!
Yes, I know, I attain perfection every time I reorganize that towel closet and perfection is stolen from me in days. I know eleven-year-old habits will be hard to break. Quit raining your well-balanced logic on my parade.
Our M.E.P went really well, considering I had to deal with letting go some more—which wasn’t much fun off and on. I have gone from a capable gal who could unpack most of the house after a move in a couple days to our M.E.P taking three weeks. I had a day of hating that. Much improved over what could have been three weeks of hating that. She’s growing, she’s accepting. (Still stinks though…grumble…grumble).
Your mind is still on all those wasted drawer fronts, isn’t it? Don’t worry, we’ll do something creative for our new kitty with them (I will tell you about him next time). Wait, you’re not worried about that? You just want to know how we could have ruined eight of them?
Sometimes you have this plan that looks great all sketched out, even measures out perfectly, but it just fails. The drill bit was bent and we didn’t know it. The hole for the right side was off just a tiny bit, so the template was off all those times. Lastly, plain and simple, the drill slipped in my grasp (drills are heavier to me now than they used to be).
Sometimes you just have to roll with it. And know when to walk away and let your spouse work out their geometry skills. Knowing when to walk away can be harder than you think. I’m a hang-on-with-my-teeth girl. After I walked away (mentally and physically), my patience for the whole project grew. I used to like drilling—not so much anymore. Gladly, my husband has a knack for it and finished up the fronts and doors like a pro.
Letting go can be very freeing. To be honest, I haven’t noticed the tools, the boxes on the front steps, the unfinished part all that much since I ‘walked away.’ That is not me. Actually, it’s the new me. The project got done, and I didn’t stress about it. Chalk up one successful M.E.P!
Have you had a fun or exasperating M.E.P? Leave me a message about it below!