When the Brakes Are Broken

Overreactions, random anger, fatigue, lack of empathy, impaired judgement, low attention span, impulsive behavior, inappropriate comments, depression.....All symptoms of a frontal lobe brain injury.

Self help groups will tell you these changes are "Not excuses, it's neurology." 

Caregiver support groups will tell you "It's like being stuck in an abusive relationship that you should never make excuses for."

Neither approaches have helped me. 

We have been married for 22 years and I have spent 11 of them navigating our life and relationship through and around his brain injury.

I have never written about it but I feel like it's time for me to share my feelings instead of just thinking them in the hopes that it not only lifts some burdens but encourages someone else going through something similar.

Brain injuries don't just change the person who was injured. It changes every single relationship people have with them. The conversations, connections, the balance. All of it shifts and instead of being able to get closer to them, the injury usually kicks in and propels you further apart. 

The daily overstimulation, mood swings, exhaustion, heightened reactions, and watching the person not being able to control it, feels like watching someone ride a bike when the brakes are broken. The more momentum that is given to the pedals, the bigger the crash will be when it can't stop and comes to its own end. I have spent years trying to fix the brakes. Counseling, medication, hyperbaric oxygen, THC, light therapy....You name it, I have had him try it. Nothing has significantly worked so I have, with guilt, ignored the brakes and tried to just get him off the bike, but, he won't listen and back on the bike he goes.

It's been an unusually rough year on top of several difficult ones. As a result, the marital edges that were already frayed have begun to tear, and, the unusual but pure lack of emotional strength I have to mend them, has made for some long and trying months. 

After a difficult turn of events, carrying the weight of being a one person show, as I usually am, has just been harder. More emotional. More exhausting. More suffocating. There have been so many situations lately where having a loving and supportive spouse help would have been so welcomed. For every opportunity he had, he either did not notice it or chose not to take it. Every time it felt like more weight be added on top of me. Over time, I managed to get through it but I also had to pep talk myself along the way more so than I have ever done. 

And so, I type, this as a reminder to myself that I am alone but not lonely. I am fragile but not broken. I am beaten down but I haven't given up. I am overwhelmed but I am capable.

I am my own self help and support group. 

I think it would have been more helpful if I was told straight from the beginning that, as much as I would love to have someone to scoop me up, cradle, and comfort me on the really hard days, well, harsh as it may seem, that person is gone. 

Luckily, I have always been the one to scoop, cradle and comfort, so, there's that, I guess.....

All joking aside, there is no real preparation or course of action for the emotional, financial, physical, and psychological tolls a brain injury causes. It takes immense resilience and adaptability to get through this as a spouse, and, if there is an upside, it's personal growth I have gotten out of this. I've tested my boundaries and developed new skills, established good routines, learned to prioritize self care, and found odd senses of fulfillment and pride for the way I have stepped up and maneuvered quite well through these years while solely taking care of my husband, children, and myself. If that is the trade off, then, that's okay. 

Ultimately, I think when you allow yourself to realize and accept the brakes are broken, you should just stop trying to fix them and I have finally told myself that's okay too.