“I do.
For many, those words begin life together as a married couple. They signify a couple as healthy and ready before settling down for children in their own home. I have Crohn’s Disease of 17 years and Caitlin has epilepsy of 11. Caitlin also experiences PTSD from an abusive relationship. Our ray of sunshine comes in the form of a blond-headed little boy who calls me daddy and I call son. Our conditions were, and are, enough that neither of us were able to work. My loving mother housed us three of our five years.
For all that was set against us at the start we certainly had a number of things in our favor. Growing up with a single mother who fought as hard as she could to love me through my illness taught me the plight of single mothers. She gave me the courage to endure the weight of seeing someone you love in pain while being strong for them. Caitlin’s mother loved her father through his battle with epilepsy that took 12 years before he finally became stable. She learned what it was to love someone no matter the cost and that they can give so much more than fiscal assistance. Further still, the woman I was seriously involved with before Caitlin was a single mother with her own set of emotional scars from repeated abuse. After watching that relationship unravel, despite knowing her from the age of 12, I was sure no one would be capable of loving me through my disease. For Caitlin, coming out of a several-years’ nightmare and with a son to boot, she felt like there was little hope for her, too. We’ve laughed at the thought of simply being the last choice for the other but being delighted regardless.
It was only a few weeks into our marriage before the words ‘I do’ were tested as I became septic and would have died were it not for my new bride. After so many years of essentially being brushed aside by ER docs that merely saw me as a burden rather than a patient in need of a patch-up, I had no desire to go. It wasn’t until we were there that we realized just how bad off I was and was immediately hospitalized for some time. She refused to leave the entire time I was there and even slept in the bed with me when allowed. It was there, in the hospital, that she had to grab my face and remind me that she wasn’t going anywhere. This was an event we repeated to the other several times.
While I want to say that the first year was the hardest, I struggle to. Our struggles never seemed to let up. Still, it was within those first six months that I tried to do it all. It was only a few months before getting married that Caitlin’s seizures picked up to being between one and five in a single day. She was at a place where it would require someone constantly with her and constantly alert to her status right as she married someone that was free to do just that. Unfortunately, I was able to because of an illness that led to my own ER visits. It wasn’t until the third or fourth visit that our parents finally sat us down and convinced us to let Caitlin’s parents be the ones to raise Kyle for us so that we can take care of each other. It was when I sat at a small grocery store with Caitlin seizing on the floor and the two-year-old in the cart that we truly had to acquiesce and come to grips with our own limitations. Stepping back felt like the ultimate failure and still holds that pain, especially in the face of those that would act as if we hadn’t already tried everything we could to keep him with us. Me bleeding in the bathroom and my wife unconscious on the floor is exactly why we had to.
Among the list of what we had to accept was the severity of what was done to Caitlin by her ex. While she knew it was an unhealthy relationship, it wasn’t until a DHS worker pointed out her behavior as being point-by-point that of a sexual assault survivor that the walls she built within herself to cope cracked. Then the real healing she needed could take place. I was with her as we fought through that and am still so proud of her. Through the counseling sessions that hurt more than it felt like it helped. Through the repeated flashbacks of her seeing him and not me. Through the screaming nightmares that could take thirty minutes to fully pull her back to reality after waking her. I will admit that there were nights, after being unable to bring her back in the dead of night, I stepped back and went downstairs. All I could do was stare helplessly at the floor as I prayed in desperation for what it took to go back up there and do what I swore to do. What my love would call me to do.
In the course of our marriage and the litany of surprises that chose to manifest themselves, one of the internal ones I didn’t expect was the haze of bitterness my heart latched onto regarding the demanding nature of Caitlin’s illness. Most of the time my own status of being would mean that I wasn’t able to attend certain functions or do certain things around the house. When Caitlin would have a seizure or a flashback my own pain didn’t matter, and I simply had to take care of her. Though a burden I happily bared, it still took its toll. ‘I was supposed to be the sick one’ I thought, and immediately led to feelings of anger that such a thought would appear. Unfortunately, that feeling followed me around regularly as I would be at a 7 or 8 in pain yet still have to drive her to an appointment or take her to the emergency room for her problems. I underestimated how many of these visits would happen due to kidney stones from seizure medications. Even one that stopped her bladder from emptying. Being in that level of pain while knowing there were things that simply had to be done was cracking me, bit by bit.
It took me nearly four years to recognize how I needed to make sure I took care of myself as well as Caitlin. If I was out of commission, then I wouldn’t be able to take care of her and then everything would just get worse. Through much hardship and heartache, we’ve been able to get to a point where friends and family take her when needed and have spent time with her during her several in-hospital seizure monitorings, where they strip you of your medications and force you to have seizures to map where they’re coming from in your brain or been with her during her two brain surgeries. Yes. Two. The first removed a large amount of a lesion from her right temporal lobe. That stopped the seizures for about 18 months. This recent one was done in two parts wherein they placed electrode grids both on and in her brain. After being unable to actually capture a grand mal seizure, a seizure where the person is flailing, for the first week, they had to extend her stay a week longer to try and capture one. While still in the hospital they then removed her entire right temporal lobe.
Knowing my wife was at the hospital and being unable to visit her due to my own pain levels was ravaging my mind. My stress levels were skyrocketing, and I just felt like a horrible person. All of that then made me physically worse which then made it harder to be up there for her thus making a wonderful cycle. To make things worse, her grandfather passed away suddenly while she was in the hospital. Meaning that she was unable to attend the funeral. A live stream, while adding a measure of involvement, is a paltry replacement of human interaction with her loved ones. Wickline Church has been helping greatly with both visits to me at our apartment and to her when she was in the hospital. We’re fully aware of the places we have it better off than others and are grateful for the love we hardly deserve.
All in all, I feel like things are looking up. We have our own place. Caitlin finally had her second brain surgery after waiting some 18 months. Cannabis is legal in Oklahoma now, so we can pursue it to help with my Crohn’s, its pain, and supplement Caitlin’s medications to ensure she stays seizure free. Through it all we feel wonderfully close and comfortable with one another. Caitlin fought through much of her own emotional burdens and I, after my huge crash late last year from pushing myself too hard for too long, pursued my own counseling and treatments for my own baggage. We’ve had good conversations with friends to better reinforce those bonds and have been shown physical acts of love by our parents and new church relationships. Through the surgeries, ER visits, doctors, tears, pain, exhaustion, desperation, and sorrow, we find ourselves now at a place that feels firm. Hope deferred makes the heart grow weary. I fully believe that as it’s been the knife in my heart from every failed treatment and broken relationship. But now I feel like I have actual hope for my future. For our future.”
This story was submitted to Love What Matters by Zack Plog, 31, of Oklahoma City, Oklahoma. You can follow him on Instagram here. Submit your story here, and subscribe to our best love stories in our free newsletter here.
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