There are very few times in my life , perhaps only two, that I have been faced with terrifying, fear-inducing situations where I must take responsibility, where it is clearly mine and cannot be shared. The first was a great many years ago but I remember not only the circumstances but that deep well of fear and the almost overwhelming desire to run, to somehow get away.
I was in University of Pennsylvania Dental School and we were living in a small corner apartment on the third floor of a seedy apartment house on Baltimore Ave in Philadelphia, overlooking the street car tracks. We had just brought our first child home; my wife had had a difficult time and so I did all the getting up, walking around, etc.
Sometime in the middle of the first night, I was walking back and forth holding the baby, who was screaming inconsolably and I was desperate. Every few minutes a streetcar would grind past and re-energize the baby’s crying. I didn’t know what to do, I knew that I couldn’t handle this, my shirt was drenched with flop sweat, my insides were a ball of misery and all I wanted to do was to put the baby down and run. I was desperate.
What I don’t remember is how things got better. I guess the baby stopped crying and I fell asleep too. Things didn’t look as impossible in the morning and life went on but the memory of that overwhelming fear and the desire to run stayed with me.
The second time was quite recent, last weekend in fact. I was up early and at my desk. I could hear my wife’s footsteps as she came downstairs, unusually early for her. She peeked in my door, gave a finger wiggle and smile, then screeched and fell to the floor in a seizure. I turned her on her side, within seconds she had stopped seizing but continued with active noisy breathing. I called 911, unlocked the front door and stayed with her until the EMTs got her in the ambulance and left for the hospital.
The rest of Saturday after she woke was consumed with tests and waiting for some answer to appear but, nothing did. No UTI, no changes in her cat scan so the eventual unhappy conclusion was that this was only progress of her disease. That first evening in the hospital she became agitated so keeping her in bed, keeping her clothes and blankets on was a wrestling match. Eventually she fell deeply asleep and I went home around midnight.
Sunday, she slept a lot, wouldn’t eat but was quite sweet and pleasant and not agitated so I sat and talked to her and waited; there was nothing more to be gained by keeping her in the hospital so we went home about noon. The afternoon was relatively normal, it was clear she had lost some capabilities. She was quite weak, couldn’t walk well and seemed to not have much balance. She seemed to understand much less.
All of this was foreshadowing.
We had supper on trays in the sitting room, tv on to some un-threatening movie. She ate strangely, without a fork or spoon, just her fingers. Her speech was unintelligible as it had been for almost a year but still she seemed happy and not upset. I left to bring my tray into the kitchen and when I returned I found her leaning well over, almost on her side, her tray mostly upset – and yet she was still watching the screen, unaware that anything was wrong.
And my mind flashed back to that long moment of fear years before. Was this my future? Taking care of a large infant, feeding her, managing her, disrupting everything, discarding everything for the need to take care of her? And for some brief instant, I wanted nothing else in the world so much as to turn and run.
Well, clearly I didn’t but that’s not the real point of this story at all.
Getting past that fear, that desire to run has taught me so much.
For as relatively crappy our life is now compared to what it could have been if she were healthy, I’m happy.
Like men always wonder if they will be brave enough when the time comes that bravery is needed, I have always wondered if, deep down, I really really loved my wife. Past all the day to day annoyances we put up with, past all the comforts of physical pleasures, past all the accommodations we make to not be alone, to have someone, do I really love her?
And, luckily for me, I do.
Yes, in some abstract way, I do miss some of what I’ve had to give up. I’m sorry that there are things we will not do together but at the very bottom of things, I know that what I feel is real and that I will do gladly anything that has to be done to keep her comfortable and happy.
There is a good body of work that shows that constant exercise of a word, a phrase keeps that single portion of speech alive and understandable for patients with dementia.
So, to keep that phrase and thought alive, so it is the last words she will remember, a hundred times a day I lean over and say ‘I love you’ and inevitably she smiles back at me.