Married to Hydrocephalus

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By Andrew Johnson

Married to HydrocephalusWhen I first met my wife, Jennifer, I had no idea what hydrocephalus was. She told me she had the condition while at dinner on our first date. I asked a few questions and then we moved on to other topics. I had no idea that this strange word she had just said to me was a word that would affect every day of my life from that moment on. I had no idea the kind of effect this word had had on her during the better part of her 23 years of life.  When I got home that night, I sat down at my computer and started to search “hydrocephalus.” I found some information, and even some articles that Jennifer had written about her own experiences. I learned a lot, but at the same time I still knew nothing. I knew some facts and some effects of the condition, even some specifics of what Jenn had dealt with. However, I had not yet experienced what it was to live with hydrocephalus; or what it was like to see the person you love more than anything on earth live with hydrocephalus. I would soon learn.

By the time Jenn and I met and started dating, she had already undergone 97 brain surgeries as a result of hydrocephalus. 97 was a staggering number to me. More importantly, however, it meant I had a lot of catching up to do. After 97 surgeries Jennifer and her family were experts on her condition. What she dealt with on a daily basis, knowing her bad days from good days, and knowing what she needed and when, were all things they knew how to identify. Learning was a slow process. Not only was there so much for me to learn, but Jennifer had to learn how to trust me. Why, after years of dealing with guys not understanding her or not wanting to deal with the struggles of her condition, would she think that this “cheesehead” from Wisconsin was up to the task? Why would he want to? Little by little I learned more about hydrocephalus the condition and, most importantly, how hydrocephalus affected Jenn’s life. To me, more important than all of that, was learning what I was supposed to do to help. When she needed a hug, when she needed space, and when she needed me to reassure her that hydrocephalus was not going to scare me away.

Fortunately, I had been with Jenn for close to a year before she had another surgery. This gave me time to be more prepared, or so I thought. It was for a shunt revision and we knew the day prior that we would be heading in. I was terrified. I was scared for Jenn and worried about her having the surgery, but more than anything I was terrified about whether or not I would do a good job. I had heard all of the stories about her amazing mother, Denise. How she knew everything Jenn needed before and after a surgery and how she knew how to make sure Jenn was getting everything she needed when she couldn’t speak for herself. What if I couldn’t do it? What if I did a bad job? Would Jenn and Denise think I just wasn’t cut out for it?

There are two main traits a man is pre-wired with. One of them is a desire and a need to do a “good job.” This is one of the most difficult things when being married to someone with hydrocephalus.  You see everything they go through. You know they have dealt with more than most people could ever imagine. You also know that they didn’t make it this far on their own, and they are going to need more help going forward. As a loving partner or spouse, you want nothing more than to just do a good job for them; to do the right thing, at the right time, when they need it the most.  Eventually you come to the realization that to do a “good job” for them all of the time, is simply not possible. There will be times where you don’t say or do the right thing. Or times where they are having such a bad day that nothing you do will help. When the person you love is hurting or going through a hard time, the thought that you aren’t going to always be able to give them what they need is hard to accept.

The second main trait a man is pre-wired with is the need to “fix” it. If something is wrong, we have to fix it. Broken shelf… fix it, computer not working… fix it, spousal argument… fix it. Hydrocephalus… fix it? This could be one of the hardest things for anyone to deal with and accept when a loved one has hydrocephalus or any chronic condition that has no cure. If you’re sick, you lay in bed and get better. If you have a broken bone, you go to the hospital and get it set.  Right now, there is nothing in this world that will make hydrocephalus go away. There is nothing to “fix it.” There is nothing I can do to make Jenn’s pain go away and there is nothing I can do to stop her from having any more surgeries. Simply stated, it’s heartbreaking.

Being the spouse of someone with hydrocephalus is not easy. There are a great many reasons why it is not easy. I only mentioned a couple. However, it is not impossible. Jennifer and I, along with many other couples, prove that fact. I may not always be able to do a good job, but I can try my best at all times. I listen as often as I can to Jenn when she talks about what she needs from me or what I can do. I have learned to watch her and pick up on different visual cues that let me know how she is feeling. I use these to change how I approach her and what I do to try to help her.  I may not ever be able to “fix it” for Jenn, but I can be her advocate. I can spread awareness of hydrocephalus to everyone I meet and let them know that we will not ever rest until there is a cure.

Most importantly I can be there for her. I can be her best friend and her husband. I can cheer her up when she is down and hold her up when she doesn’t have the strength.  Jenn often apologizes that I have to go through all of this. She says that she has the condition not me. I then remind her that she never chose this life, but I did.

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