Living with a lover who has a TBI, is like being in a relationship where you don’t share the same language. Imagine if you will, dating someone who spoke French. You speak English. Perhaps you can both speak a little of the other’s native language, but not well enough to be fluid. So while on a day to day basis, you can get by when dealing with life’s little occurrences, when there is a misunderstanding or confrontation, you retreat to the language of your own brain, and everything falls apart.
Traumatic Brain Injury has a language all its own. As caregivers, we cannot become fluid in this language. The most we can do is learn to interpret it as best we can. I’ve worked very hard to learn the language of Patrick’s injury, with a pretty intense 3-year immersion course. But no matter how hard I try, I can never fully understand what it is like to live with a brain injury. I will never know what its like to live in a body that doesn’t listen to its brain’s commands, whose muscles don’t fire appropriately, and whose nervous system is always going haywire.
I consider myself a pretty empathetic person, and I easily absorb my boyfriend’s pain. But at the end of the day, I may live with brain injury, but I don’t live inside it.
I think as Caregivers, we are built to seek the good, and to find the hope in every situation. If we aren’t built that way, we become that way through this incredibly challenging experience. And as our loved ones change, progress and recover, it is very easy to want them to just “perk up,” and to see the half-full glass before them. But again, that is because we see the good. We see the recovery. But too often, we forget that their struggle is forever ongoing, despite their accomplishments.
Speaking of struggle, I was fired today (for the first time in my life), from a meaningless, silly, stupid job that I got through a temp agency. I had wanted to buy Christmas presents for my family, so I took a four-day assignment for $11 an hour in an accounting department at a local company. The tasks surrounding the job were simple: to input numbers into a computer, process payroll checks, print invoices and checks, stuff envelopes with mailings, sort invoices with stubs, file invoices in cabinets, and staple packets of paperwork together. Simple, right? Right…. or so I thought.
It has been a long time since I’ve attempted to do something detail oriented and involving numbers, which quite frankly have always been my nemesis. The women on staff were quick to show me how to do each task, but for some reason, I caught myself asking them to slow down and repeat themselves. My brain felt like it was two steps behind what they were saying.
I got the hang of things, but within a few hours, my brain felt completely fried. I looked down at the paperwork and the numbers were swirling and fuzzy on the paper. My supervisor explained to me a few more simple instructions, that I KNEW were easy to follow, but I could not follow them or remember them. I felt completely overwhelmed. My head hurt.
Later, I accidentally stuffed whole groups of checks, which were supposed to be sorted and sent out individually, into one large envelope. I then mailed them to the property that they were all filed under; stubs and checks and all. It was a nonsensical thing to do. I also made errors with the data entry, inverting numbers etc. My head hurt so badly that when she tried to explain to me why I needed to cut off the invoice stub and attach it to the invoice, I couldn’t remember what an invoice actually was in the first place.
A little while later, the company’s boss came up to me and said that they would need to cut the assignment short, as they had “overestimated how much work they needed to have done.” But as I walked out, the temp agency called and told me that the company had complained about me for 25 minutes, claiming that I was “too slow” and that it was harder to micromanage me than it was to just do it themselves.
I shouldn’t have cared. It was just a stupid temp job. I’m a college graduate, musician, artist, and TBI advocate. I’m a freaking warrior of a woman with nothing to prove. But when I hung up the phone, I cried, as a rush of embarrassment made my face hot and red. This was supposed to be a mindless way to make a little money, and instead I had gotten fired on my second day.
Upon reflection, two things have come to mind. The first is that caregiver’s often joke that they feel like they are the one’s with a brain injury, and while that may be a funny way to let off some steam, it holds more truth than most might realize. Science has shown that trauma and prolonged stress has a cognitively deteriorating effect. If I’m being truly honest, for about 18 months I have found that my cognition has declined. I often experience a “word salad” when I try to talk. My mind goes completely blank when I’m asked questions. I am very forgetful. My processing speed is slower than it has ever been. It takes me longer to understand new things. I even have a very mild word-finding problem that mimics Aphasia.
I’ve grown so accustom to this, that I’d almost forgotten it was there, until I came to face to face with it at this presumably easy “temp-job”. What was the most mortifying aspect of this experience, was that I knew that what the woman was explaining was all simple, but my brain felt like it was trudging through taffy and mud.
The second thing that came to mind upon reflection was Patrick. He was very supportive when I told him about being fired.
“Shake it off,” he said. “Just tell yourself you didn’t want to do it anyway.. that you are above that stupid job.”
I appreciated his support, but I still wanted to go home and pull the covers over my head. The truth was that I just felt like an idiot, and my ego was significantly bruised.
I had just become a little more fluid in the language of Traumatic Brain Injury.
I realized that my experience at that temp job, was a microcosm of what my boyfriend goes through every single day. When he accidentally broke our laundry machine because he had over-stuffed it with clothes too many times and the agitator finally broke, how mortifying must that be? To know that it had been explained, and he’d understood at the time, but his brain was still misfiring? What must it feel like when you put dish soap in the dishwasher, or too much paper in the toilets, or when you are always super early for everything because your sense of time is askew? What kind of emotional toll does it take on a person, to have to relearn things that they once knew, and to accept that despite your tireless work, there are some short-comings that still befall you? It is so easy for me to lose my patience with him, or to want him to see the positive. I forget the choke-hold that TBI has on him.
So you know what? I’m kind of glad that I got fired from my job, because it gave me a little further insight into the life of a TBI survivor. It also gave me a little insight into the reality of what trauma has done to my own brain, and the continued need for self-care. Lastly, it helped close the gap between my life and Patrick’s, bringing to me a new-found understanding of his world. And hey, it wasn’t a total loss. I still made $70. Have you ever been to Khols? If you get a 30% off coupon and shop online on Black Friday, with seventy bucks?… you’re basically rich.
Christmas shopping for the win…engage.
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Thank you. All our love, Anj & Patrick)