When I decided to start this blog, I promised myself I would be honest about my experiences. Sometimes that means sharing aspects of my life that I prefer to hide. But I truly believe that the only way to help other people facing difficult life circumstances is to be honest about our own experiences. So I guess I will just bare all.
Driving back to Durham from Emerald Isle, I started to feel the weird sensation in my arms again. The depression comes over me like a grey film covering everything within view. I kept looking out the car window for something beautiful, but I couldn't even focus my eyes. I took a Xanax and fell asleep for about 15 minutes; the combination of the two was enough to preempt the brewing emotional storm.
Earlier in the day I dumped the entire contents of the Xanax bottle into my hand, looking for a half tablet. As I stared at the pile of circular white pills in my palm I thought to myself, "It would be so easy. It would be so easy to take them all and just go to sleep."
I thought back to a man I dated in my early twenties, an extraordinarily brilliant man deft with the English language as well as an incredible scientist. Though I think he honestly loved me, he had built such massive walls around his heart that it was nearly impossible to draw close to him. He spoke little of his past and all I knew was that he was one of three children and that his mother had died. After months of dating I casually asked him one morning, "How did your mother die?" We had been lying on my bed just chit-chatting, enjoying a lazy morning curled like cats in the sunshine coming in through the windows. He stood up abruptly, "She killed herself and you ask too many questions." He left the house and I didn't hear from him for days. I never broached the topic with him again, but in the months we spent together I slowly came to realize that his mother's suicide left a wound so deep and raw that it still had not healed some 12 years later. Knowing what a maternal suicide can do, I poured the pills back into the bottle and put it away. I could not do that to Bill or the children.
We arrived home to discover that our cleaning lady had come earlier in the day and the house was in a pristine state. What a gift! We unloaded the bags, put away the food, and put away the clean clothes. I was exhausted from the clean-up at the beach and the re-entry process so I excused myself and lay down on my bed. I felt better in my own house, away from the scene of the crime against me.
When I was a kid my mother's gauge for whether we were well enough to return to school post-illness was fighting with our siblings. Once you got into a tussle with someone, you went back to school the next day, "You are well enough to fight, then you must be well enough for school." Using my mother's reasoning, I must be getting better because Bill and I really went at it last night (And you thought we were so lovey-dovey all the time!).
I don't even know what precipitated it. I think he was yelling at the kids, because like most kids, they can be incredibly annoying and uncooperative at the most inopportune moments. With the limited voice I have I keep coaching him, "speak nicely," "there are just being kids," "be patient." But, let's face it, Bill pretty much feels like Job these days. He is exhausted beyond description physically and emotionally. By the time the kids were in bed, Bill and I were going head to head. He was complaining about his exhaustion while I countered that he doesn't appreciate how hard I try to do what little I can, "I made the bed at the beach today. It took me ten minutes and I had to lie down twice in the process, and I swept the floors and cleaned the kitchen"
"Then why did you do it?"
"Because you cannot do everything. I wanted to help you. And you didn't even say thanks."
"Yes, I did."
"No, you didn't."
You think we'd be way past pettiness by now, but it still creeps in now and then. And I admit that I am a dirty fighter; It's the Italian hot head in me. "You know what Bill," I pause taking precise aim, "If your life is so horrible, why don't you get a hold of some morphine and infuse it into my catheter while I am sleeping. That way, we will all be put out of our misery."
"You know I don't know what to do. One day you one to live; the next you want to die. I don't know what to do. I am trying to help you."
What about my ambivalence is difficult to understand? How can he not appreciate my quandary? "You watch me cough everyday. You hold my head while I am puking. I cannot walk up a flight of stairs without being winded. I cannot dance, sing, or sometimes even talk. Making dinner exhausts me so much that I feel like I have run a marathon and I no longer have an appetite to eat it, but I make it out of love for you and my children. And that is one of the few moments of joy I can count on most days. For 6 months I have been trying to find every speck of joy and beauty in this shitfest I am living in and then, out of the God damn blue, I get an air embolism that has shaken me to the core."
"You're right Bill. I don't know if I want to live or die. it changes every day, every hour. This is not a life; it is an existence. And I am not someone who ever merely existed."
Proceeding as if we have the energy to deal with self-inflicted suffering to our union, We continue our duel with our lunges and parries. Then in a rare strategic move I forfeit and walk away.
He comes to me later, when I am lying in bed. "In the past you have asked me to give you permission to die and I have refused. I realize now that I have no right to refuse you. I wanted to fix it; I wanted to make it better. I still do ... I still have that hope. But you have suffered enough and, when you decide it is time to go, I will respect your decision." The tears that usually just well in his eyes flowed down his cheeks. It is the closest I have ever seen him come to sobbing.
I know how hard it is for him to utter these words not only as my husband but also as a physician. At the age of ten, Bill decided to become a doctor when a physician finally diagnosed his youngest sister, who was essentially dying of malnutrition, with celiac disease. When I met Bill he told me the story, "I wanted to be like that man who made my mother so happy and saved my sister's life." His "failure" to heal me strikes at the core of his being. It is the ultimate form of impotence: to be a physician and unable to save your dying wife.
We talked more about where we go from here. We decided to leave everything unchanged for now: daily TPN, food as tolerated, one foot in front of the other, one day at a time. Then we fell asleep, side-by-side, holding hands and holding on, once more, for dear life.