The ego is a funny thing and mine has created tunnel vision around Sean’s illness. I focus on the impact it has on me. I lost my partner. I lost my co-parent. I lost my income. I lost my idyllic family. I lost my future, my camper, my vacation plans, my freedom, my carefree existence. I’ve even lost a few friends who just don’t know what the hell to do with our new dynamic so they have chosen, instead, to shrink into the background. I get it. Prior to this mess, I might have done the same.
What I often fail to recognize is the impact it has on Sean. He has, quite literally, lost his mind. Without the benefit of a functioning limbic system, he’s lost the ability to control his emotions, to remember things that happened five minutes ago, to process complicated things happening around him, to see clearly, to think critically. He’s lost his identity as the provider, the fixer of all that is broken, the finder of all that is lost. And, in a sadistic twist of fate, his mind doesn’t allow him the luxury of not being aware of these deficits. He has moments of total clarity when he not only recognizes his impairments but also feels the weight of them in his life to come.
Can you imagine?
He gets one life and, barring a miracle, he will spend the second half of it confused and unable to function at a level even close to normal.
Today I watched one of these revelatory episodes in the car on the way home from a physical therapy session that ended badly. Sean was in such a hurry to get out of the clinic that I was unable to speak to the therapist to find out what the heck happened. He was crying and angry. By the time he buckled his seat belt, he couldn’t remember what had set him off. When I pushed him on the issue, he clutched the sides of his head with both hands, rocked back and forth and began to sob. He banged his hands on the dash and said, “I can’t remember. Damnit, damnit! I know something happened but my brain is broken and I cannot remember what. Why me? Why is this happening to me?”
If I had a nickel for every time I asked myself and God that question…
This scene brought me back from my own pity party and into a place of true empathy, something my survival instinct has allowed me to avoid much of the time. I looked at him and saw the man that I love and have shared my life with for the past 21 years, struggling to make sense of a devastating brain injury that makes no damn sense. It broke me.
How will we create some sort of quality of life for the next 40 years? How will he ever accept his condition and stop torturing himself by asking why? How will I? Will he ever experience joy again? Is it even possible?
These are the questions running through my head on this fine Monday morning. I think a hilarious cat video is in order. Got any good ones?