I’ve spent a lot of time writing about why it’s so hard to be married to someone with a chronic illness. It is. Joe puts up with a lot. He is as affected by my unusual sleep/wake schedule, my unpredictable pain levels, and the general emotional roller coaster of illness as I am. He drives me to appointments, suffers through medical jargon, and hopes for better days right along with me. I’m not trying to minimize his sacrifice, because it is most definitely significant.
Even though I recognize all Joe does for me, I’m sometimes exhausted by people who act like Joe is the holiest of saints for putting up with his crippled, reject wife. I’m aware of the sad glances, the hushed voices, the people who ask Joe how I’m doing- even when I’m standing there- because they assume he’s managing my care. To some degree, I’m glad they see his silent heroism. I’m glad they see that he is a trooper who has dedicated his life to making the best of a bad situation. Seriously, he’s awesome. If you would like to invite him twirl the baton in any parade, I’ll be the person cheering the loudest.
BUT I’m still a human. I’m still a vital part of this relationship. As a matter of fact, if I weren’t here, I sort of think Joe would get lonely. While I think Joe is the most fabulous of the male species (let’s be honest, males are their own distinct species), I think he and I need each other- rather than I simply need him and he kindly and good naturedly puts up with my drama.
1. We have fun together. Believe it or not, my life with Joe is at least 80% Netflix binges, sing alongs while we cook, puppy snuggles (with the dog- that’s not a code or anything), and philosophical discussions that make my eyes cross. The other 20% is less fun, of course. But, seriously, I know people that would love to have an 80% enjoyable life.
2. My brain is mostly functional. Sure, there are brain fog moments (which sometimes add some silly laughter to the 80% of fun in our lives), but for the most part even when I can’t walk, sit up for long, or do basic household chores- I can still think. That means I can help Joe brainstorm for book ideas, teaching techniques, or general household problem solving. I’m not completely useless. There are days that I feel completely useless, but I’m glad I still have a way to contribute.
3. I’m a good listener. Joe and I haven’t kept it a secret that he struggles with depression. I realize that depression is a complicated illness that requires much more than a good listener, and I’m forever thankful for doctors, therapists, and medication. However, I still believe that I have a role in his success despite obstacles. I listen to him. I occasionally offer advice. (Actually, I typically offer advice, but it’s only good advice on occasion.) I love this guy, and I want to do my part to make this life simpler.
4. I love the people he loves. My best advice to anyone in a new relationship is to learn to love who your significant other loves. His parents hold a special place in my heart, and I do all I can to help Joe as he cares for his parents. I’ve developed an affection for Joe’s friends, because it’s easy to love someone who loves my husband and treats him well.
5. I’m a valid excuse. Okay, this one might not be a “good” reason why I’m not a total drain, but it’s true. Here’s the thing- fevers and dislocated joints are a part of my daily existence. That stinks; it really does. BUT if there’s ever anything Joe really doesn’t want to do he can truthfully say, “My wife dislocated her hip and needs some help around the house.” Or “My wife is running a fever and vomiting. I don’t need to leave her.” Granted, he hasn’t utilized those excuses (except when I actually needed someone to stay with me), but I like knowing they’re there. It makes me feel like he’s getting a little something out of being married to me. Edit: Joe says he used me as an excuse once when he was sitting next to a really strange man at a meeting. My apologies to our friend, Twyla, because he left her alone with said unusual man.
I’ll grant you some of my reasoning is silly. I’ll even grant that most of the things on my list should be expected of anyone in a healthy relationship. However, I want the world to see that when you’re married to someone who is disabled, it’s not always a labor of love. Sure, there are bizarre moments that would never happen in a relationship between two able bodied adults, but for the most part we’re normal. Joe didn’t have to sell his soul or his life to get married to this hot mess. Do I regret that I brought illness into his life? Sure, I would totally change it if I could- for both of us. That, however, does not give me an excuse not to be as good of a partner as I am capable of being.
Peace, love, and health, friends.