this post has been long overdue, but frankly i have been too much of a brat to write it. one of the things about brain injuries that is either under-addressed, or i just have not found enough information about, is the toll that brain injuries take on relationships.
navigating relationships post-TBI is pretty dicey, because on top of being more prone to outbursts of temper and emotional instability (sorry, honey, it’s not me- it’s my brain…)the person with the TBI is also simultaneously more fragile. medically they may have gone through hell, and may still be going through all kinds of intense medical situations that make people around them very hesitant about putting them through even more stress. if the TBI involved something like a brain bleed, there can be fears (sometimes real, but usually not) that making the brain-injured patient upset can cause another bleed.
certainly i’m not advocating picking fights in the ICU. but once someone is medically stable (whatever that looks like for each person will be different, and sometimes limited stability is all we get…) we can be a lot tougher than we seem. but it is hard for people who love us to trust that, and it can be easier to dance on eggshells and to get in the habit of just giving in to us to keep the peace. this can lead to lots of simmering resentment on the part of the non-brain-injured party, and lots of confusion on the part of the person with the TBI, who may have problems deciphering subtleties in interactions that people without TBIs are reasonably expected to pick up on. without lots of patience and good communication (both of which i will remind you that most TBI patients lack, at least in the chunk of time following their TBI), this can put extreme strain on a relationship.
add to this that the primary caregiver of the person with the brain injury is now probably picking up the slack in other areas of life that used to be shared and this becomes a lot tougher. add to this that brain injuries are not time-limited or even understood the way that other things are- so there is no, “don’t worry, you’ll be out of that cast and walking around in 6 weeks mrs. jones!” and no, “just let that burn heal for 10 days and don’t get it wet- so no washing dishes! it’s fine; we can use disposables for 10 days…”- with brain injuries you just heal at whatever pace you do, for however long you do, however much you do, and i’m sorry to throw all the good doctors out there under the bus who are trying very hard to understand brains and neuroplasticity and whatnot… but doctors understand very very little about how brains work, and much of what they thought they understood has been wrong. so even the people who are trying to help you often can’t give you what you need. they can’t give you time frames…
in special forces training when they want to put recruits in a maximally stressful situation, they tell them that they will be in an exercise of indeterminate length and duration. so they will have to exert maximum effort at all times, while still trying to hold some energy in reserve in case the training scenario stretches on longer than they could have anticipated. imagine how crazy-making that is. if they give 100% of their best upfront, they might get exhausted and be unable to complete the test. but if they hold back and it ends up being for nothing, they never got to shine. but they have to try as hard as they can, while simultaneously never knowing how hard to try or exactly what is expected of them.
i think that’s what it’s like to be a caregiver of someone with a TBI. like babies, we don’t come with instructions. like children, we are each different in our needs, abilities, development, and personalities. and like good parents, good caregivers have to go a lot on their instincts. when is it better to help and when is it kinder to pull back and let us try on our own- even if we might fail or get frustrated 7,000 times? when is it better to give us what we want and when is it important to stand your ground and have a voice? when does it makes sense to do everything and when does it make sense to change the standards so we can do our part too?
12 years post-TBI *h and i are still figuring out the answers to these questions. they change as time goes on and they change based on where i am medically at any given time. things have not always been smooth for us as we have tried to navigate these waters- sometimes harder for him, and sometimes harder for me. we have had some times of real heartbreak and some times of real togetherness. at times, *h has been anything but a *, and at times i have hardly deserved a *, but we are working on that. through it all, he has stayed committed to our family, and that is no small feat in the face of something as huge as a TBI.
truly once your brain gets scrambled, things are never the same. i hold onto a hope that they can be better, although i don’t always believe that. i guess part of the majesty of being a human being is that in spite of all evidence to the contrary, even on days where every neuron in my body is firing wrong, i can still believe that healing will be possible.
and i guess that’s the most transcendent way to survive with a TBI.