One Piece at a Time

These days I consider myself more of a wife than a caregiver. And that's a gift for which I give many, many thanks. Caregiving is a strange, beautiful, complex thing, but it's even more complicated when you're in the position of providing care for your partner or spouse.

A lot of dear people have spent a lot of time worrying about my relationship with my husband (including me). After TC sustained his severe brain injury in August 2012, I found new meaning in the word "wife." No longer did I associate this term with the tender, romantic love that often characterizes young marriages. Suddenly the roles of "husband" and "wife" called to mind a sense of grit, loyalty, and staunch determination. After all, there's not a lot of cutesiness associated with cleaning out trach tubes, filling out disability paperwork, and helping your partner transfer from the bed to the wheelchair.  There is, however, a lot of love.

It goes without saying that there's a great deal of pressure on caregivers, among them the pressure to maintain a traditional romantic relationship. At the beginning of our TBI journey, I remember well-meaning friends and family offering to watch Jack so that TC and I could have a "date night." I felt like a terrible person admitting, even to myself, that a "date night" was the last thing that would help me unwind or feel relaxed. After hours and hours at my husband's bedside, followed by hours in the therapy room, rekindling our romance wasn't going to be as simple as putting on a dress and heading to a restaurant. The few times we did attempt a "normal" date, we sat mostly in silence, TC's aphasia still too severe for us to connect through conversation.

I understood people's intentions, however. To preserve any semblance of our romantic life, we would have to try to be those people again. But it was the expectation to try that caused me more anxiety than anything else at the time. I loved my husband, and I wanted to stay. I wanted to help him through his difficult recovery, and I wanted to protect our little family. But after months of shock trying to process the violent crime that caused his injury, along with the gutting and ambiguous sense of mourning I was trying to work through emotionally, was it really fair that I should be expected to make kissy faces at him too?

Sex and romance are not topics many people feel comfortable discussing with caregivers, although I highly doubt it stops curious minds from silent inquiries. And, to be fair, they're still not topics about which I'm ready to pen a tell-all. I will say this, however, to the anxious TBI-affected couple: go easy on yourselves.

Perhaps it's not the norm for couples to stay romantically connected through so much gritty intimacy. Perhaps the normalcy lies in putting the romance on hold for a while, at least until both partners have a chance to breathe again. And perhaps the biggest work upon which any couple will embark during recovery from brain injury is the work of planting new seeds of romance, not simply trying to imitate the same attraction you once held.

All of this takes time and a lot of patience. And I suspect there are few couples able to do it without any outside support or therapy. Timing has been an important factor for TC and me.  We couldn't focus on romance while simultaneously trying to fix every other piece of our lives. Our world is constructed around a very ambitious and deliberate to-do list that only allows us to focus on one life changer at a time. Sometimes I think of it as one of those thousand piece puzzles I used to attempt as a kid. Never would I throw all the pieces in the air and expect them to land perfectly connected. Clearly, the only way to construct something that multi-faceted is to do it one piece at a time. In the same vein, only once the foundation of our lives was intact again, were we able to shift our attention back to our romantic connection.

Learning to have fun again has been another savior of our marriage. Judge as you will, but after three years, I'm ready to admit that there was a period in which I wasn't truly enjoying one-on-one time with my husband. In fact, the experience of spending forced time together was so draining that I remember feeling sad one day just because I missed the sensation of actually missing him. If we couldn't have fun together, how could we ever miss each other's company? Fortunately, time has given us back our sense of humor, which has, in turn, lit a new spark within our relationship. Taking everything so seriously all the time was not only detrimental to our mental health, but to the relationship we needed to rebuild. Little things like board games, bowling, and family dance parties have allowed me to look at my husband with fresh eyes, attracted to his new sense of spontaneity and lack of pretension.

In many types of caregiving relationships, the romance must be put temporarily on pause. When my father fell ill with liver disease, I remember how difficult it was for my mother to access her own vulnerability and affection toward him. There was so much new information to process at the time, so much fear to work through. But it hardly seems fair to ourselves as caregivers to brand our relationships as failures if we can't immediately make them look or feel the way they did prior to caregiving. All of this pressure, all of these self-imposed and societal expectations, only serve to put additional stress on the relationship. These days I refuse to be ashamed that TC and I are not the model couple for brain injury recovery. We've experienced dips and valleys lower than we could have dreamed, but how could we not? And how would it help anyone to pretend that the road to recovery is perfectly smooth? The point is that romance might not have to be put on hold forever and that things can and do get better for partners, one piece at a time.