In sickness and in health: Wesley’s journey as an IBD spouse

 
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It was one of the most stressful times of my professional life. We were in the middle of a large project at work that was heavily dependent on my contributions, and I was traveling to our office in Texas at least twice a month (we lived in Atlanta at the time). I had planned to travel that week, but some competing pressures at work led me to decide to stay home and work out of our main office. My commute was a little over an hour, and so I didn’t get home till about 7 p.m. that night. Kristen hadn’t been sleeping well at night and had been very sick, so I was glad to see her asleep when I got home. I could tell she hadn’t taken her night meds, though, so I tried to wake her up so she could take those and then go back to sleep.

That was when I knew something was wrong. She couldn’t put a coherent sentence together. I had seen enough neurological exams performed to know a few questions to ask, and when she couldn’t answer them, I knew it was serious. Her speech was slurred. Was it a stroke? Another reaction to a med? Would she have seizures again? Whatever it was, I knew we needed help. I slowly guided her down the stairs, buckled her into the car, threw together a bag, and drove her to the hospital. 

This time, the cause turned out to be kidney failure – the meds I had been faithfully trying to get her to take weren’t being processed by her body, so the levels in her bloodstream were rising to dangerous levels, causing usually mild neurological side effects, to be amplified. It wasn’t the first time I had seen her in an altered mental status. When we were 18, and I was celebrating my graduation from high school, she had multiple seizures as a reaction to a biologic drug; unbeknownst to us, her brain had been slowly swelling for weeks, culminating in a terrifying night of seven grand mal seizures.

Several years later, when she had surgery to remove her failed j-pouch and have an ostomy placed, she had a reaction to the anesthesia and was delirious for days. But to find someone I love, and whose intellect had attracted me to her since we were sixteen, unable to speak never gets easier or less terrifying. 

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Being a caregiver of someone with a chronic illness means relationships get defined in very different ways than they otherwise might have. There are seasons when it feels like my primary role is more caregiver than anything else. But even when life is filled with hospital stays and surgeries, we find ways to remember to care for one another – when intimacy means holding hands in an ICU bed and date night might mean bringing in takeout instead of eating a hospital meal. It isn’t easy.

And it can be hard to admit –  but one way Kristen cares for me during those times is to find someone else to take care of her for a night so I can get some respite from the stress of caring for her myself. But when, after a long day of work, she messages me and tells me to go home instead of having me take a trip to the hospital to visit her because she instead found a friend to come see her, I know that this is a small way she cares for me – and I am grateful for the bit of extra sleep.

Some judge this way of relating to each other and question our commitment when my every waking moment can’t be spent by her bedside during seasons of exacerbated illness. But a chronic illness, which by definition has no defined end, means that life must go on even in the midst of it. So we’ve learned to figure out how to care for each other while also making sure bills get paid.

We’ve also learned how important it is to cherish the moments when things are going well. Right now, we are in a season of life where her health is stable and our marriage looks fairly “normal.” The illness is always there – that third wheel in our relationship which at any time may rear its head and try to assert that it gets to call the shots. But we’ve learned that though the illness will always be part of our relationship, it doesn’t have to define it. And though it may not always look quite the way we might have imagined, we get to love each other and care for one another in the best ways we can.

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Sometimes it is difficult and sometimes we fail – but we have been blessed to learn early on the joy that comes as we strive to live out the highest ideals of our wedding vows, “to love, comfort, honor, and keep, in sickness and in health, and forsaking all others be faithful, as long as we both shall live.”[1]

[1] From The United Methodist Book of Worship (adapted), p. 117

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While not an IBDer himself, Wesley Sanders has supported Kristen, his wife of eight years, through more than a decade of hospitalizations, surgeries, and daily life with Crohn’s disease.

He is currently the director of finance at a provider-owned health insurer and is completing his MBA at Georgia Tech. He also holds a BA in psychology from Binghamton University and a Master of Divinity from Emory University. A self-proclaimed health policy wonk and an enthusiastic part of #HealthPolicyTwitter, he is passionate about health care reform and regulation. In his spare time, he enjoys working on their tanks of tropical fish, singing and preaching at local churches, and playing Dungeons and Dragons.

 
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