My sister and I used to joke that we were going to move to France when we were 85 and live in a tiny village town together, going down to the local pretend village for food with little baskets in our pretend future and maybe have a couple of pretend cats despite my allergy. Neither one of us speak fluently, but that’s neither here nor there. Up until the time she died I always had this sensation that we would grow old together, the two of us. Free of life’s concerns save for what we’ll walk down to the village and purchase to make dinner. She died in January of 2011, four months after her husband was diagnosed with terminal cancer. I had just come off of the worst pneumonia/upper respiratory infection I’ve had as an adult and the doctor prescribed me the pediatric dose of xanax to help counter the effects of my albuterol.
I remember screaming when my brother in law told me she had died. The night leading up to her death I kept mumbling wordless prayers even though I’m an atheist. Mainly it went like “don’t take her, because of her son. please don’t take her. he needs her, I need her. but her son. don’t take her. please. you can’t take her. her son. her son. her son.” Then there were all her hospital transfers and sheriff escorts because of course she would pick the shittiest snow storm of the year to fucking die of pneumonia at 45 years of age. My childhood best friend’s father was working on her during one of her emergency surgeries. One of my oldest friends was working as a nurse at the hospital during that time. I hoped that these connections to me mattered since these people knew me and she and I looked so much alike, maybe if they saw her and thought about me they would work harder and save her life. I sat at home that night she died pondering questions like, the sky has opened up and it’s snowing and I can’t get there for three days and how will I get a pair of winter boots?” While she was fighting for her life I was wondering what I was going to put on my feet. She lost.
I wondered if my best friend’s dad looked at Miriam thinking she looked like me. I wondered if he stood there over her, looking at his own hands. He saw me as a patient when I was young, for my respiratory problems. I can’t imagine he knew that he would one day care for my sister as she died from hers. I wondered if that hurt him. Cut him. Pained him. Troubled him. Followed him that he couldn’t save her. No one could.
Ric called at about 4am. Deep down, I already knew she was dead. I knew around 11pm. Somehow I could just fucking tell that the universe had taken the person I share the most genetic material with, who I look like, who mothered me, who thought nothing was ever good enough for me, who fought for me, who understood me. We had more shared experiences than with anyone else on earth, especially now that I’m raising her son. As I age and look in the mirror I catch a glimpse of myself out of the corner of my eye and I gasp because I look just like her.
My wailing lasted for what seemed like forever. My brother in law sat on the other side of the phone, tired, busy dying with cancer. Impatient to deal with my bullshit, no doubt, but I had just found out my sister died and this primal screaming came from a place I never knew existed. It lasted long enough to wake up my husband and my daughter and for my mind to say “who is screaming.” And why is this screaming lasting for so long. I’m pretty sure I fell down in that hallway. Dmitri and Ric were with her at the hospital witnessing god knows how many horrors. Perforated bowls, military grade respirators, emergency surgeries. ARDS. Sepsis. The medical professionals kept performing cpr on her so her husband and child could come into her room and say goodbye. I’m pretty sure I felt her ribs break, all the way in California.
I had had this intense fear of flying when I began flying commercially in 2000. It was all the usual bullshit, sweaty palms, upset stomach, the urge to run from each gate where I sat shitting myself with the opposite of anticipation. My first flight, I was headed to San Diego to work in Sally Ride’s UCSD Earthkam lab for the summer as part of a research experience for undergraduates. My sister and my mom came to the gate with me and sent me off, back in the days where you could walk someone to the gate even if you weren’t traveling. Miriam snapped a photo of my worried face before I boarded the airplane. I flew many many times through my fear. I would look at the comfortable little old ladies in the seats beside me with panic on my face as we did a totally normal bank. Or clutch the armrests with fear during turbulence, sweating. Miriam would tell me regularly, you had better just get used to flying because you’re going to need to fly for your career. So I did my best to do what she said. Eventually after enough traveling I could make myself go and experience mostly mild panic and anxiety.
That all changed after she died. Fortunately I had had that bad bout of upper respiratory infection and I had this sweet bottle of pediatric doses of xanax. Being anxiety prone I cut those in half because I had anxiety about taking anxiety pills. There was no way I could board that airplane home to her, dead, without that xanax. The first week she died I took a whole pill each day. The day we went up to the house (now my house) and Ric told me it was his fault I wanted to physically crawl out of my skin. If I had had the means to exit my body during those moments, I would have. I couldn’t bear to be in the house. I had this fear I would catch whatever killed her. I was afraid to touch her glasses. Her notebook. Her pen. I sat in her room where she convalesced until she died of fucking pneumonia, shaking, wondering if I would catch it and die next. That day he told me it was his fault I should have taken two xanax, but I didn’t. Instead I quietly lost my shit and we went back to the hotel where my three year old and her dad played in the snow.
I kept telling myself if it were me and Mike was dying she would do what I did. But how could she ever know I would take care of her husband while he was cancering his way to the grave. That I would take him to oncology appointments and Dmitri to therapy appointments and feed them and clean up after them and spend time with them. The worst was when I would drive her truck with Ric in the passenger on those back mountain roads, creeping along at 5 miles per hour and the cancer was in his bones and every bump and crevasse would send pain through his body. Or maybe the worst was when his heart was troubling him and he didn’t tell me and we’d have to go to the ER and sit for hours. No the worst was when he dropped a pain pill in his favorite leather chair and he thought Dmitri maybe ate it and they had to go to the ER to see (Dmitri didn’t take it, in fact). Or maybe the worst was when Dmitri ran to his father’s room to give him a pain filled hug because we all knew where this was going as I stood in Dmitri’s room, silently watching. Until I said “it’s okay.” Ric angrily, furiously, manically yelled at me “IT’S NEVER GOING TO BE OKAY.” For a while I thought the worst was when I walked into the house that May and when Dmitri laid eyes on me, and saw how much I looked like his mother without actually being his mother, he hauled ass up up to his room to cower in the corner, sobbing like a small, helpless kitten. Listening from downstairs to Ric asking him “Why are you crying, Bud?” “Why are you behind your bicycle over there? Come over here” cut me in the deepest of places. I stood on the porch, shaking, with the wind burning the exposed parts of my body because my face, something I had no control over, hurt this little, precious child who had already experienced a lifetime of hurt, ten lifetimes of hurt, a hundred and seventeen thousand lifetimes of hurt. I hurt him simply by existing. I got the fuck out of there as quickly as I could, worried I would hurt him even more. I remember the rental car tires skidding on the rocks at the bottom of the driveway as I hauled ass right the fuck out of there.
I spent a large portion of the following summer laying in her bed, in her room reading book after book every night, finding the one corner in the house where I could download these books and standing there fiddling with my blackberry to ensure I never went without something to read, trying to find a way to live with taking care of her husband and her child. There was a lot of panic of how the fuck was I going to parent a disabled child. Right after Ric died, using the only currency I could think of, I would take D to McDonalds for some chicken nuggets. He was so fragile and angry and hurt. I remember him screaming loudly, defiantly, red faced, refusing to get into my sister’s truck, and I was thinking “someone is going to think I am kidnapping this child and call the police on us.” Fortunately no one did. I sat in Ric’s pain pill chair slowly going through his bills and paperwork, with my inhaler nearby because every surface in that house and every paper was covered in goddamn cocksucking cat hair. Settling an estate is no easy business. Being 34, when you don’t know shit, and settling your sister and your brother in law’s estate and taking on the lifetime care of a child with down syndrome and autism is staggering. Mindblowing. Mind altering. I just sat there, in his chair, in his room, in front of his tv with both of them gone, having left me with this looking at paper after endless paper trying to piece together my life. Maybe I can weave my life together with 10,000 sheets of paper that don’t mean much of anything after you die. I don’t know.
It emptied me. It emptied me all out. I would carry Dmitri up and down the stairs like an automaton and sometimes maybe a martinet, he weighed 65 squirmy pounds. The stairs had a landing halfway through. Right away I told Ric I didn’t like making Dmitri do things because it made him cry and then that made me cry. Ric very firmly commanded me in his official navy voice that he and Miriam and discussed it and they had decided that Dmitri had to be forced to do the things he was required to do and that I had better sign up for this fucking program or else. I sat there with tears in my eyes and a broken heart, hurting. Okay. Okay. I will make him do the things he is expected to do even though it makes us both cry. Dmitri would struggle out of the clothes I would put on him each morning. He would refuse to go downstairs to eat breakfast so he could go to school, each morning. Like his parents wanted him to do. So I did it all, even though it meant carrying him up and down and up and down and down and up. He would sit on the ground spontaneously. Sometimes in crosswalks with oncoming cars. Many times in parking lots. I got proficient at picking him up. Sometimes I would calculate how many pounds I had lifted that day after the reading but before I drifted off to sleep. Sometimes it was 650 pounds. Sometimes it was 1100. I would make his oatmeal in the quiet mornings to the sound of the oak trees using the dishes I had given my sister when I left everything behind and moved out west, listening to the steady hum of her kitchen appliances. What was I doing in her house taking care of her son. This was her job.
The trees up there on that quiet mountain sound like the water when the wind blows. I would sit in her room looking out her window into the yard at the deer. I would wake up in the mornings when the ground was dusted in snow and see the animal tracks leading up to the back porch. There were a rash of black bears that year and we lived in the mountains and one of my favorite women on Ric’s side of the family said, when the black bear comes up to the house, kill it with one of Ric’s guns and then tell the sheriff you were just shooting “at” the bear and you didn’t mean to kill it.
Ric loved to antagonize me by telling me he was the only member of the NRA AND Greenpeace. This election cycle has made me appreciate the second amendment for the first time. I’m planning on going shooting soon. He antagonized Miriam with it too. She hated having guns in the house. I gave both guns and the gun safe to a family member. I got to do that since everything in the house now belonged to me, including a very angry and hurt little boy.
2010 had been a very fruitful creative year for me. I was sewing, spinning, knitting, taking photos, growing my business. I finished my thesis and finally received my masters degree in physics. I went on a couple of terrific business trips. I met new people. I got so sick with that respiratory gig I remember laying in bed thinking my heart was beating too fast. I ended up with a steroid shot, xanax, a zpac eating pho at every meal until I finally, finally felt better. I spent a fair amount of time remembering how hard it was to breathe, since my sister drowned in her own pneumonia. I spent a fair amount of time thinking about the sound of my visceral screaming. I spent a lot of time thinking.