We always loved to treat our kids with ice cream cake for their birthdays. Maybe because in both of our families Baskin Robbins’ ice cream cake meant something celebratory was happening. Something much bigger than a birthday. It meant the Pope was coming over for dinner, even though neither my husband’s family nor mine were catholic. We had ice cream cake the night before he had his stroke, our son turned thirteen that night. Peter had a headache, which wasn’t that unusual. The unusual part was he wasn’t speaking very much. I went to bed before him. Again no big deal. The big deal came much later.
The next morning when I woke up he was still in bed asleep, another red flag with the benefit of hindsight. The day drifted on and so did Peter but at this point his restful sleep was being interrupted by vomiting. God dammit, I say to myself, now I have to wash the sheets and the pillows. I walk upstairs resigned to clean up whatever mess existed. He was lying on the floor next to our bed, asleep or so I thought. He is not asleep and every part of me knew the truth. I call my mom upstairs and ask her what I should do. God forbid I make a decision without her consent. She tells me to call 911. I think to myself, I can’t possibly call 911, he’s just sleeping. I call anyway, mostly to appease my mother. I make the call and explain what he looks like and as I do I begin to slowly accept the fact that he does need an ambulance. In the time it takes for the skilled professionals to arrive at my house, I clothe Peter the best I can and wipe the vomit that has slid into his hair and on the floor. I would hate for him to be embarrassed by his appearance.
The EMTs arrive and from that point on all I can hear is white noise. The EMTs are asking me question after question and all I can hear is ringing in my ears. I shake my head no, not really hearing the question but thinking maybe one of the firemen asked me about illicit drug use. Illicit drug use? This is Peter. The firemen move all of my bedroom furniture to access the various body parts that they need. I feel like I am underwater, drowning. In the movies and T.V. dramas, people in my situation fall to their knees and scream bloody murder. I keep waiting for my body to stop betraying me and exhibit some sort of emotion. Nothing. We arrive at the hospital and three nurses are waiting for our ambulance. One nurse helps me out of the vehicle and the other two assist in the back. The nurse asks me if I know what is happening and where I am. I nod yes and mumble to her that my husband has had a stroke. I remember, I tell her. I repeat to the nurse, “I remember, he told me in there”. I point to the ambulance. The lobby of Providence is filled with sick people as well as several police officers. I can’t tell if the cops are waiting for an injured criminal or one of their own.
I float passed them, unable to feel my feet, I wonder to myself if I am in a wheel chair. I am not. The nurse ushers me into a stark waiting room. The nurse hands me a paper cup half filled with cool water. I look down at my water and try to ignore the fact that this is the room where doctors tell you that your person has died.
My in-laws step into the room and the nurse looks at me for my approval. My body stops betraying me and I start to shake uncontrollably. The pretty, blonde nurse leaves and my mother in-law and I start to talk. My father in-law sits quietly. She tells me that Peter will be fine, he always has been. She tells me a story about Peter when he was five, that I have heard about a thousand times. I want to hear it again. She tells me he is strong and healthy. My body knows otherwise. I throw up the small amount of water I was able to sip, plus the dinner I ate three hours prior. My body shakes even harder. The doctor comes in and informs us that Red has indeed had a stroke and he is gravely ill. My mother in-law repeats, verbatim, the childhood story about Peter and how he is healthy and strong.
He was in surgery for what seems liked a hundred years but in actuality was about six hours. My body, now feeling the full effects of trauma, shuts down completely. During the six hours my beloved was in surgery, I fainted, threw up and slept in the ICU waiting area. My in-laws beside me the whole way. I don’t remember who called home and informed my mother that Peter was now a stroke victim, but someone did.
After Peter was wheeled into the ICU, I couldn’t imagine things could get worse, but they did.
I walk into the ICU room, after ringing the doorbell, yelling my name into the intercom and scrubbing my hands with Purel. Everything feels as if I am in a tunnel, maybe it’s tunnel vision or maybe I am going blind, I don’t know and I don’t care, I just want to see Red.
He has four green rubber tubes coming out of his head. The tubes trail all the way down to the floor and end in plastic bags made to capture the blood from his brain. I soon learn to monitor these bags because the ratio of blood to clear liquid is important for his recovery. I am instantly struck by a few things; one is that I feel anxiety like I have never felt before and two, everyone in the ICU is remarkably quiet. I want to scream at the sight of Peter but I don’t because I know I will be asked to leave. The feeling remains. I also know that he hates this existence, he hates doctors and he detests hospitals. I have betrayed him by letting these doctors shave his glorious locks and cut his skull open. (Even when the EMTs were putting him in the ambulance, he was swatting them away.) It doesn’t matter that they were trying to save his life.
Shock is the human body’s way of coping with the unfathomable. Seeing someone you love with tubes coming out of their head, tubes that are touching their brain, is unfathomable. Peter spends the next few days in the ICU. While he was there he was accepted into a John Hopkins study, received hundreds of visitors and somehow became the nurses favorite patient. On day four of his stay, I was standing next to him about to tell him goodbye for the night and he opened his eyes. He opened his eyes and he looked directly into mine. In his eyes I see fear and confusion. I explain to him that he has had a stroke and he shouldn’t try to move. I now understand, after looking in his eyes, that he no longer wants to live. I reject this truth. I reject the fact that he probably will never be able to move his left side again. I reject the fact that he will never again be able to coach the sports he loves. I reject the fact that he will need medical transportation everywhere he travels. I reject these things, that he already seems to understand. I stand over him and will him to change his mind. I tell him not to worry and he blinks his eyes twice to let me know he understands. Convincing myself that he will fight to live is impossible, so I enlist the help of my mother and mother in-law. I call both shortly after I leave the hospital and tell them the great news. He is awake and he is going to live, I announce to both. I know I am lying about the living part, but who cares. Everyone rejoices in this news. I do not.
I know he has chosen to die and by the end of that night I accept this. I tell no one about his choice. The next day when I arrive at the ICU, my in-laws are already in his room and they look pale and exhausted. I don’t have the heart to tell them I know Peter will die, so I pretend, like everyone else, that he will get better and with a little physical therapy make a full recovery. When I enter the room, I look at my husband and he looks horrendous. He is bright red (more than usual) and his body, overnight, has developed big, bold welts all over his arms. These welts move as he breathes, up and down, up and down, moving in time with the ventilator. My mother-in-law stands up and tells me that Peter might have the flu or that’s what the doctors think. I ask my mother-in-law what she thinks and she tells me that the flu is something he will easily overcome. I know it’s not the flu. He has given his life to his higher power, and his body reflects his decision. The doctor later informs us that his hypothalamus is dysfunctional and cannot control his brain. So even though the blood has drained from his brain and his heart and other important organs are functioning properly, his brain is not. This news confounds my in-laws and his doctors. Not me. I know Peter well enough to know that his mind is made up. I start to plan his funeral. At this point my family starts to view my resolve or acceptance as giving up and a number of contentious feelings arise.
I am a ball of anxiety. I don’t really understand why until the night he dies. I, as his spouse, have to make the final decision to take him off of life support but in my mind I am convinced he has already made it for me. Family and friends gather into the cramped ICU room a few decisions are made. Voices are raised and feelings are hurt as we take him off of every machine. The doctors tell us he will stop breathing in about ten minutes. His death happens forty-eight hours later.
Peter died the way we began, peacefully holding my hand, me and him against the world.
“Love liberates, it doesn’t bind. Love says, I love you. I love you if you’re in China, I love you if you’re in Harlem, I love you if you’re across town. I love you.
I would like to be near you, I’d like to hear your voice in my ear, I would like to have your arms around me but that’s not possible now, so I loved you…Go.”
4 thoughts on “This is how the fuck I got here.”
I am here for you my dear friend, to sit with you in this place. Thank you for sharing yourself with us in this way.
You were so brave. You are still so brave. Love you.
I can scarcely imagine the pain of letting go. So loving and so heartbreaking at the same time. You are strong and courageous. Peter was blessed by you and you by him. I know from your writing this heart wrenching piece that you understood each other so well, and that is a living testament of your marriage. With love and admiration. Sue Eki
I’ve read and re-read your post about how you got here. I’ve experienced some of it first hand, so It became personal for me. You wrote honestly and beautifully of the experience of a spouse in your circumstances. Thank you for that.