I woke up this morning and the first thing I did was stumble out of bed in time to puke into a bucket I keep close at hand "just in case." It was clearly going to be one of those days. As the episode continued, I paged Bill repeatedly. Sometimes the pages just don't go through. Finally he called me back, "I am on my way." Bill took care of me until my friend Amy arrived. We chatted for a while and then she left me to rest while remaining in the house in case I needed her. I had to wonder to myself if we will soon enter the phase of the, "death watch," during which friends come and sit so that I am not alone. I hope we aren't there yet; I hope today is just a bad day.
Sunday night Amelia and I were watching "Little House on the Prairie" again. As we sat down together on the sofa, she reached out to touch my upper arm. "Your arms are getting so much bigger," she observed, grinning broadly and clapping her hands together. I didn't have the heart to tell her that some of the girth is edema nor the sad reality that my weight gain has not translated into an improvement in my lung function as we had hoped. I couldn't bear to tell her how desparately my heart is trying to compensate for the inadequacies of my lungs. Nor could I share my fears that my heart cannot compensate for much longer.
I wondered how my more robust physique is enough to override all the other signs of my growing debilitation: being on oxygen, needing a wheelchair, hiring a nanny to meet their bus and help prepare dinner. Does she choose not to see all the signs of my demise or is she merely holding fast to the belief that once I gain enough weight, all will return to normal? I worry that she is in denial and that she will be blindsided by my death. But I also don't want to force her to acknowledge a reality that she is clearly unready to face.
Aidan is the opposite. He sees his world going to hell and he's pissed. Two weeks ago during a fight with me he yelled, "I know you are dying; I just wish you would die sooner." The next day when we was calm and snuggly, I brought up his statement. "I know how you feel, Aidan. You know something terrible is going to happen and part of you just wants to get it over with. You needn't feel badly about feeling that way. I feel that way sometimes too," I confessed. "I just want you to die, but then I want you to come back better." I didn't realize that a part of him did not understand that my death was permanent, "Aidan when I die I am not coming back. At least not in this body. You won't be able to see me or touch me." He buried his little head in my lap and cried and cried. There was nothing else to do but hold him.
For BIll and I reality hit home in a real and final way on Friday. The results of the exercise test clearly showed that my heart and lungs are not functioning well, explaining my complete intolerance to activity. On Sunday Bill ad I talked again. "No more tests," I told him, "I am tired of suffering." Tears welled in Bill's eyes, "I love you too much to see you continue to suffer. I just want to make you as comfortable as possible so that you can enjoy your remaining time and we can make some more memories." We talked about moving into acceptance, together this time. It's an important first step.
I vaccillate between wanting more time to make more memories, to tuck the children in one more night, to cuddle with them on the sofa and read. There are days when this minimalist life is more than enough. And then there are days like today, which start off with my head in a bowl and during which I spend hours in bed feeling physically awful and anxious, and I wish death would hurry. The reality is that what I want, or the way it vaccilates, matters little. It will come in its own time