What I knew about brain damage before the stroke wouldn’t have even filled a thimble. What I know now, would maybe fill a thimble. I have done some reading, but most of what I understand is from the perspective of my own experience, and so must be taken with more than a grain of salt.
It seems to me that the stroke left much of what was personality. The psychiatrist would probably put this under the crystalized memory category. What it meant to me was that in many ways my husband seemed like the same man, except he wasn’t. It is difficult to put this into words. It was not that I was married to a perfect man. He had his weaknesses, but these weaknesses were something he was aware of and worked to correct. In many areas the stroke left the weaknesses without the corrections.
For instance: Pre-stroke, when we would go out to eat, we would often share an entree, or a dessert, and sometimes (when I was feeling particularly patient and generous) even a cup of coffee. We would both be mindful to only take half, so that the other person would have their fair share. Post stroke, my husband would eat the meal brought to him by the hospital, then would proceed to ask for and eat my food. I had a hard time telling him no, because after all, he was the one suffering, and that hospital food didn’t look all that great (although he ate every bit of it). While the concept of sharing food was an old one, the consideration of making sure I had enough to eat was gone. He not only wanted to eat my food, he didn’t want to let me leave the room long enough to get food for myself because he thought he might need me while I was gone. The man I married would have quickly realized that I needed food, rest, a break, comfort, spiritual encouragement. Strokeman couldn’t see me for anything other than what he needed. I thought that this was because he was in the midst of trauma and just needed time to adjust. I came to learn that it was more a result of not being able to take new information and process it into appropriate choices.
I had struggled with this for weeks, trying to hide my food and eat it while he was sleeping so I wouldn’t have to tell him no, trying to eat while he was eating so he wouldn’t have a chance to finish his food and start on mine. Then one day I had gotten a couple of muffins for us from Panera. He made a big deal out of not eating one of them so that he could give it to his physical therapist. I had a moment. There was a rumbling in my heart and I felt that I might scream at this poor man laying in the bed with only half of his body functioning. I refrained from smothering him with his pillow. I refrained from beating him with the call button (those things are pretty heavy and swing nicely from the cord that brings them electricity-not that I have given it much thought). I even refrained from telling him the therapist could get her own #*&^%$ muffin. I just looked at him and said, ” I would love for you to be half as concerned about my needs as you are about Jessica getting this muffin!” It penetrated. He started trying to remember to consider my need for sustenance. It was not consistent, but bless him, he tried. He could not, however, generalize this to any other aspect of my life. I began to feel like I was living an existence over in the black hole of his left side. The only part of me he could see was the part that met his needs.
Another for instance is his obsession with his bodily functions. Pre-stroke, he preferred his privacy, and his regularity. He liked to get “everything” done before leaving the house, and sometimes on trips we would all be sitting in the car waiting while he tried one more time to have his morning bowel movement. However, if it were not possible, we still left. He might be a little out of sorts, but he would not let this keep him from functioning in the world. Post-stroke, he is embarrassed if he thinks one of the kids hears me asking him if he needs to pee (hard to keep from rolling my African eyes over that one). And he simply will not leave the house if he thinks he might have to use the bathroom before we get home. I get it. It is difficult to maneuver everything in a new environment. I have learned that “handicap bathroom” has a variety of interpretations, several of which are decidedly unhelpful. However, I have read about a myriad of stroke survivors who learn to overcome amazing odds by having the guts to try, fail, try, fail and try again. This type of determination did not survive the brain damage. He is unwilling to fail. He is terribly afraid to fail. He is terrified of soiling himself in public. Many days he cannot muster the courage to try.
This worry and fear is another aspect of the stroke that took me by surprise. I think Strokeman is by nature a worrier, but by the time I met him, he had matured enough in his trust of a sovereign God to not worry about much. That left me free to worry and fret, knowing he would bring me back to my senses. Suddenly the roles have changed. He worries about everything, and I do my best to reign him in – fairly unsuccessfully.
For all his obsession over his privacy, insisting I bathe him, dress him, help him with the urinal, etc, while the patient techs stood idly by, he was not terribly discreet about the intimate part of our relationship (yes, we still have one). He began to ask the nurses if the door had a lock on it. He would joke about his favorite therapy – ST- and he wasn’t talking about speech. Again, once I scolded him for embarrassing me, he tried to stop, most of the time.
In a lot of ways it is like starting over from infancy. As he has had to relearn how to walk, feed himself, etc, he has also had to go from being totally self absorbed to learning self control and consideration of others. In his effort to be more considerate, he often makes choices that aren’t really helpful, while neglecting the ones that would be helpful. Sometimes I can tell he is thinking really hard to come up with the right response to a decision, but he just can’t quite figure out what that should be.
I have had to learn to speak plainly, be firm, and look for what we used to call teaching opportunities. This has not been an easy change for either of us. As his crystalized memory is still in tact, sometimes he is insulted by my perceived condescension. It is a fine line I am walking. More and more often now I see signs that we are making progress. I don’t know if he will make it all the way back. In reality, even if he did our relationship would not be the same. I have changed too much in the process. But I can’t help but look for the hopeful indicators that he is returning to me.