Abstract
After more than 16 years, the author reflects on and describes the trauma of the end of her father's life. This autoethnographic illness and grief narrative is a reflection on the dying experience and how his death shaped her almost as much as his life did. The Puerto Rican cultural context is evident, and it is from that perspective alone that the story is informed. Many of the details were captured in journals and notes from the time, including drawings and sketches. Now, 16 years after her father's death, her mother has breast cancer. The author reflects on how these new experiences have changed her life again, in part by the recognition that the changes precipitated by her father's death are long term.
PAGING LA NEGRITA DE PA' (PAGING PA'S DEAR ONE)
I suppose anyone far away from home with an ill relative lives in fear of the telephone. I did. Nothing like a phone ringing at night to set me to pacing and praying, unable to fall asleep the entire night. My mind was not quiet, never quiet for all those years I lived in the U.S., from 1982 until 1991. Every time the phone rang, I would jump, get the chills, and my internal organs seemed to do the mambo. The day came, as I knew that it would, and life changed instantly.
Finally, one Sunday afternoon it came: the call. In October of 1991, when I least expected it, the phone rang and I had, for no good reason, a bad feeling about it. I pressed the pause button for the VCR, and Kevin Costner froze in place, looking mad at my audacity, stopping him from going to the field of dreams in his back yard. My husband Tom answered, and I heard his heavily accented words that hit my head like a meat-tenderizing hammer: “Momentito, por favor.” Immediately I wanted to run to the bathroom to puke or dissolve in diarrhea, but I grabbed the phone anyway.
It was my Aunt Carmen Ana. She is also my madrina (godmother), and in that capacity she is the designated bearer of bad news. She cleared her throat, like a bugler getting ready to blow the morning reverie, and said, without pause: “Hola, Ive (my nickname at home). Luis (my father) is not doing well, he has pneumonia, and the doctor said to tell his children so they can make arrangements to come in.” I replied, determined to make this easy on my madrina: “OK, I will be there as soon as possible. How is Mami (my mother)?” She paused, and I knew Mami was a wreck. “She is tired, been up with him, and you can imagine.” Yes, get your ass back home, she meant. “Tell her I am on my way.”
Now it made sense why I could not get ahold of Mami. After we had finally put Papi in a nursing home 3 months before, I could not find her at home as easily. I guess I was hoping she was out visiting family or shopping. My tia told me she would tell Mami, blessed me, and we hung up.
I called my sister, who then fell apart and asked me to make her travel arrangements from Mexico. My husband and I made her arrangements with me sobbing and blowing my nose in the background. The operators and travel agents we contacted never addressed the emotional noise of our conversation. They would just say “Pardon? Could you repeat that?”
After the call, I fell apart, as though dismembered. Tom hugged me, and we crawled to the sofa, and I fell into a pit of despair, worried, praying, begging Papi would not die before I got there to see his amber eyes. I felt no connection with my body, all the agony in my head kept me dizzy. I kept going into the past and jolting back to the present, and worse, wincing at the future. I would remember two bad things, then three good, then four bad, then one good, then pictured skulls and bones, disapproving looks from all for not being there taking care of Papi 24/7, like a good hija should. Then I would remember how proud Papi was of my independence, how sure he was of my ability to handle life, amazing for the baby of the family. On a daily basis he would tell me, sometimes more than once, that I could do anything I wanted, that I had the brains to be anything I wanted to be, that whatever I wanted to be I could become. Looking back, it was as though he wanted to build me up before he was taken away by Alzheimer's disarray.
The way back home to Caguas, Puerto Rico, was long and torturous. Tom came with me, holding me together like a shattered vase, careful to stick the pieces that stubbornly and noisily fell out along the way, soothing the pain with thigh-loving foods like cake and cookies.
La luz de alante es la que alumbra.
(The first light is the brightest.)—Puerto Rican refrán (saying)
THE BEGINNING OF THE END
Anyway, as they say, reports of Papi's demise were hugely exaggerated. We arrived home October 26, 1991, to partake in a long and unbelievably painful goodbye. It took him 4 months to die after the call. Tom left after 2 weeks to go back to work. My job at the University of Pittsburgh was “on hold.” Having used all possible leave, I was not being paid anymore. I kept having to call them every week to tell them my father had not died yet, but was still dying. The lady I spoke with once said: “Are you sure he is going to die?” I told this to Papi, who hardly opened his eyes anymore, tangled up in his tracheotomy and gastrostomy tubing. I swear, he looked at me and smiled.
After spending almost all of the 4 months of Papi's agony with Mami, my sister had to return to her job and husband in Mexico. They would not hold her job any longer. Mami and I remained by Papi's side. We were so exhausted, so incoherent, so lost. We got a nurse to stay with Papi at night, so we could go home to sleep. I was beginning to fear for Mami's health now. Before we left, Mami was showing the nurse some magazines and books we had, and I looked at Papi. He opened his amber eyes, those beautiful eyelashes, and I blessed him like he blessed me all my life: Que Dios te bendiga y te guarde. I kissed him, and thought he looked different somehow. A wave of fear ran through me, but I told myself that we had to go home now. We went home, after stopping for take-out, ate and went to bed. I could not stand the TV shows. Nobody was sad in those stupid shows.
THE END OF THE END
After living for 55 years almost free of disease, Papi acquired Alzheimer's disease and remained on earth for the following 15 years. He had only left his beloved Puerto Rico once, as a soldier in World War II. This time he was to depart after the fight of his life, the fight against Alzheimer's disease. At 4:36 a.m. the phone rang. I was awake already. Mami answered the phone. By the time she came to my room to tell me we had to go to the hospital, I was up and dressed, on my way to wash my face and brush my teeth. At 4:45 we were in the car, trembling quietly, wondering what else we could say to each other. My head was so noisy, full of screams and fear. In a major intersection before the exit to the highway, our car stalled. Cars screeched, horns blared, people yelled profanities, and the car would not start. We were yelling too: “What do you want me to do, idiot? God, please, help! Oh, God, oh, God, oh, God.” Somehow, the car started, and we made it back to the house after stalling six more times. Mami called our neighbor, who was getting her garbage out. She took us without any questions. We entered Papi's room, but his bed was empty, and orderlies were cleaning the room. Mami headed for the nurses' station. I looked down and saw a red piece of paper. I bent down and grabbed it, and quickly dropped it when I saw what it was, as if it were hot. It was a toe tag.
At the nurses' station, we were given the details. Papi had died in the night, when they called he had already died, since they had do not resuscitate instructions. Mami asked the nurse to repeat herself, in disbelief. Both the nurse and I looked at Mami, surprised. “You knew he was very, very ill, didn't you?” said the nurse. Mami said: “I kept hoping.” I hugged her, and took her outside to the waiting area. We had seen many people wait there, and get the news. We never talked about it, knowing one day we would get the news and cry in the same seats of pain.
With Mami crying in the crying room, I called my Aunt Lynn, told her Papi had passed away, and she said: “I'll be right there.” Next I received a call; it was Marilyn, Titi Lynn's daughter. She is my first cousin, and a physician. After Titi Lynn told her about Papi, she called to express her condolences separately. She, too, would be there right away. After the call, I had to beg to call long distance to Mexico, so I could tell my sister. Her husband answered the phone. I said: “Hola, Everardo. It happened. Do you want to tell her?” He said: “I'll get her for you.” I told her the news: “Mari, Papi died this morning. We had gone home after 2 weeks of sleeping on chairs, and you know how he is. That is when he decided to die. Probably was waiting for us to finally leave.” I heard nothing on the other end for a long time, then sobs, finally she said, “OK, thanks, I have to go.” I said: “Go, I love you.” Choking, she said: “Me too.” Her husband grabbed the phone. He said: “It will take her 3 days to get there.” I said: “We will wait for her, do not worry.” We would just have to have a long vigil, I thought.
THE LAST GOODBYE
As we were sitting in the waiting area, drinking ginger ale (the drink of last resort for me), someone with a tie and coat came over. It was the hospital administration representative, who had some unexpected news for us. The final irony was that because he died without a relative, someone had to now go identify the body. I wanted to scream! The administrator then said: “You knew he was dying, right?” I told him: “He died so many times before.” He took my hand and said: “He spared you the final one, then.” I knew he was right, and smiled at him, nodding at the truth of his statement. A nurse then came to say the body was ready.
My mother looked at me with the eyes of a terrified child, to be spared one final punishment. I told the nurse I would identify the body. My cousin, aunt, and uncle came in, as if on cue. My uncle said he would go with me, Marilyn too. On our way there, my big, tough uncle started to hyperventilate, and he apologized: “I can't do it.” I hugged his arm, told him I could do it. Marilyn said she wanted to be with me. I nodded. My stomach was sour as we walked quietly. Before I could process that I was about to enter the morgue to identify my father's body, I saw he was waiting for me inside a black bag made of furniture covering material.
My cousin, Marilyn, was there holding my shoulders, as if to keep me from flying. At this point the attendant said, “OK, here it is, just take one brief look. Do not dwell on it, or the memory will haunt you.” His voice was commanding, but not harsh. He had sweet eyes, big and brown. He reminded me of the paintings on the walls of my childhood bedroom (that Mami got at Woolworth's). His nametag said “Ortiz.” I looked at him and nodded, and I tasted the ginger ale I had been drinking after we got the news. Marilyn and I looked at each other fast, and then I heard the zipper. I kept looking ahead, not wanting the moment to end, because after this I may not see him again, but also because I was afraid. Skulls came to my mind. Ortiz cleared his throat, Mari moved her hands, now holding both of mine. OK, I thought, took a breath, like I was about to dive in the ocean, and looked down, I swear just for their sake. I looked, and looked, and looked, pain now transferring from my temples to my eyeballs. My eyes ricocheted from his mouth, grimaced, to his eyelids, purple and pink, back to his lips, blue, purple, gray. His forehead, gray and somehow dusty, as though someone had put talcum on it. God, where can I look that he looks like Papi, where can I rest my gaze?
As he passed to another existence, his physical body had transformed into a sunken-in, hollow doll left in the sun too long. I think how big his spirit was, that it left his body looking so deflated. His café con leche flesh had turned into the stuff they make baklava of. He made his final stance in life with his chest, I could tell that is where the battle was lost. I was thankful for the suture of his tracheotomy opening, and made believe his beautiful voice was now his again. Of all the things he lost, that was the most devastating to me. His voice of tradition, his sounds of hope made me feel invincible. I held on to this feeling, almost hearing him sing, and finally looked up, to intercept the looks exchanged between my cousin and the attendant, no doubt plotting to push me out of the room. I closed my eyes, and his face was there inside my eyelids, inside my memory. Ortiz was right. I looked too long.
As I opened my eyes, I realized I was on the floor, but did not remember falling. “What happened?” Marilyn was taking my pulse, and shhh'd me. I made an attempt to get up, with Ortiz grabbing my arm at the elbow. I felt his touch colder than ice, he still had gloves on. I shook him off with a shudder. I put my hands on the floor, and pushed myself up, almost falling again on top of Papi's bag. I covered my eyes with my hands and left, running. Marilyn walked me out and into hallways, straight ahead, turned left, turned right, straight ahead, until I felt like she was turning me round and round, like when we were going to play pin the tail on the donkey. Finally, we got to a patch of grass. I heard a baby cry, and that stopped my breakdown. My heaving and sobbing slowed down. After a while I told her I was OK, I felt her crying too. I looked at her, and repeated I was fine. Mari told me: “I feel bad I did not look. I should have offered to look for you. I am a physician.” I was offended that even in this moment of tenderness she had to throw her physician status at me. Just like Mami with the “baby of the family” crap. I was annoyed, and sassed her: “Shut up, you are not his daughter. It was not your place to look.” She gave me the same look she always did when I acted like a brat. We have always had that type of snippy relationship, with her being 5 years older than me, and me having the mouth I have. We smirked through the tears and sobbed under the guise of laughter. We hugged for a long time. I was glad Mari was there, because I knew she loved Papi. Secretly, I felt a balloon of pride in my chest, that I was the last one to see him, our private goodbye. I did not let him down.
BUSY BEE
After this bit of “family responsibility” was met, the body could be picked up by the funeral home. Mari and I went back to the intensive care unit waiting area where Mami sat with Titi Lynn, Mari's mother. Mami looked numb, raw from wiping and blowing. She looked at me and started to cry. “Ay, Ive, I feel so bad you had to do that. I should have done it. You are the….” I interrupted her and said: “I am OK.” I did not want to hear her say I was the baby of the family. This fact had never shielded me from a damn thing before, why should it now? She then looked with begging eyes, cried a little, and asked me what I knew she was going to ask me: “How did he look?” I looked away, and then back at her supplicating eyes, and said: “Handsome as ever!” I excused myself and went to the bathroom, where I puked all that was inside, and then kept on with dry heaves. I saw my reflection in the mirror, how red my eyes and nose were, how tears kept flowing, at my quivering lips, and my crazy hair. God, I looked just like Papi! I smiled at him. As I left the bathroom, I went to a little terrace that had been taken over by smokers. I looked at the sky, and found that the sun was shining. I felt its tickle on my skin, and the wind as it attempted to move my matted-down hair. I heard a bird in the distance and people joking about politics under us. I could not believe things were going on, I don't know what I thought would happen when Papi died, but I was truly surprised that life was still going on.
Back at the house, it was a disaster area, since we had not cleaned or done anything that wasn't absolutely necessary in the 4 months we spent at the hospital with Papi. My uncle Ismael came in and gave me order after order (an ex-cop, just like Papi): call the funeral home, make an appointment; call the reverend, give him news; call the Veterans Administration so that he gets the veteran ritual burial. Then we made a list of all relatives and friends who needed to be called and decided to just call the closest relatives, and let them spread the word.
I went to the back bedroom, to call Tom privately. He cried with me, and told me he was on his way. I can't wait, I think, and then feel sad that only Papi's death could allow us to be together again. Then I call Maritza, to see how she is doing. She is hanging in there, packing. She asks me to get her panty hose, she has no time to go to the store. I say “OK, don't worry.”
I hang up, feeling energized by all the things that need to be done. As I sit on the bed, I listen to the voices in the living room, my uncle mainly, dominating the conversation. I hear no crying at the moment, so I start crying, as though it is wrong that Papi passed not 4 hours ago and nobody is mourning him. I wipe my face, and look at my jeans. I don't remember the last time I washed them. All my clothes are dirty, or not clean enough.
I start taking off my pants, panties, shirt, bra, and then I hear a “tink.” The medal of the Virgen de la Providencia falls on the floor. This medal had been inside my bra all along, digging a round indentation on my left breast that looked like a cigarette burn. I quickly pick it up, and put it on the dresser. I nag at the serene-looking woman on the medal: “Take care of Papi now, since you could not keep him alive.” I jump in the shower, take the first shower I have had in weeks, and cry because I feel relieved I will now be able to take a shower, now that he is dead. Now that he is dead, we get our lives back, now that he is dead we get to smell good.
Big deal, he is gone, and I am worried about hygiene. I cry because nothing cleanses the awful guilt I feel for feeling relief. I cry and taste the soap and shampoo, which transports me to childhood, to when Papi washed my hair. I cry because even though I never remembered this before, I now know I will somehow miss it. I dry myself and shake my hair like a dog. As little drops of water fly everywhere, I remember it was he who taught me to do this, because that is what he did after he towel-dried his hair. I cry because I will never see that image again, of his head shaking crazily. I cry because I suddenly remember his sunken body, his purple eyelids, and his gray lips. I cry because now I can't get the other pictures back inside my head. All I see now is the bagged Papi. I sob and sit on the edge of the tub, take another shower. I stop sobbing, turn off the water, and start listening to the house again. I still hear Tio Ismael, a bit of Titi Lynn, but no Mami. I start to hurry, drop the shampoo, conditioner, and body oil bottles in the tub in my haste. Everybody comes to the bathroom door: “Are you OK? Did you fall?” “No, I just dropped the shampoo and conditioner bottles. Sorry I scared you.” I hear grateful sighs on the other side of the door.
I run past the living room and jump out to the porch, in time to say thank you to my tio for annoying the hell out of me giving me orders, and my aunt for giving me looks that imply I must take care of Mami. My mother decides to water the remains of the plants, see if some recover. I start to notice how these plants remind me of Papi in the bag and rush back inside. There I hear clinking of dishes in the kitchen.
I peek in and see a little woman, who is she? Oh, it is Doña Celia, our neighbor. She must have let herself in, and put herself to work, without asking or waiting to be thanked. I cry for this act of kindness, for her sweet disposition, for her hug, for the smell of Evangeline around her neck, and for the pot that is boiling on the stove. She talks to me as if she does not notice I am crying. She sits me down, and gives me some chicken and rice sopon with a spoon. As the steam fogs up my glasses, she goes to the freezer, grabs an ice cube, and drops it in the soup with a smile. Years later, I would remember this trick when feeding soup to my crying, hungry daughter.
I take off the T-shirt, and deciding to kill it, I put it in the garbage. I put on one of Mami's blouses, makes me look like a nun out of uniform. Fine, I will let my hair dry free, cannot imagine what I could do to myself if I used a blow dryer. I hear a honk, and remember that before Mari left she told me she would pick me up in an hour to get clothes for Papi. I jump, grab my purse, and start leaving, when I realize I have no shoes. Doña Celia offers to go for me, but I tell her I want to go. She then says she will stay with Mami. I thank her, and she waves me away. “Adios, Mami!” I do not tell her what I am going to do; I do not have the strength to see her cry right now.
Mari takes me to Gonzalez Padin, a fancy store. I decide to get him a shirt, tie, socks, underwear. He has a nice suit at home. All I get is brand name: Christian Dior, Givenchy, Arrow. Like it mattered. We go back home, pick up Mami to go to the funeral home. In the funeral home parking lot, my other cousin Cuca and her mother Gloria arrive. They hug and kiss us, we all cry. Inside a woman greets us. She has been doing this for ages, we can tell by her soothing demeanor and the slow pace of her words. We go to her office. She tells us we will do one thing at a time. “Perhaps a good place to start is by choosing the prayer cards, with the poem inside.” She pulls out a box full of different biblical scenes. I wait for Mami to pass off selecting and to start crying, but she surprises me. She picks the praying hands. I am proud of her, and also glad she did not pick the one with the lambs. Then she picks the prayer: the serenity prayer. Papi was very fond of this. Next, the bible passage. We both say at the same time “Psalm 24,” his favorite.
The woman writes all of this down, looking at us compassionately. I think to myself I must tip her well. Then she closes that folder, pulls out another, and says: “Now, let's think of the flowers. We have an in-house florist you can use. I look at Mami and we both nod: “We will use your florist.” “What color?” I look at Mami. It was time for me to take over. Mami started to get that faraway look, tear up, and hug herself. I nodded at my aunt Gloria, who got up and took Mami outside. Before she left she asked me: “Could you do this?” I said “OK.” I decide on yellow and white flowers. Casket? Blue casket with blue satin lining because it looked like heaven. Music? Instrumental acoustic guitar music, Papi's favorite. What room? The España room, because it was the largest. Papi had so many friends, even if we had not seen them in the 17 years he was ill.
I started composing the obituary: “Lieutenant Luis Lopez Medina, survived by his wife, two daughters, and son.” Two daughters and a son, but the only one that was doing all the work was the stupid baby of the family. The same one that saved money for when the end came, the one that helped pay $2,000 a month for Papi's nursing home, the one that had to arrange things for everyone. The asshole that continued to do everything, the one that put on 20 pounds in 4 months. The baby of the family! God, I was so mad! Maritza had left, Mami was a mess, and Hector, our half brother, had not even called to talk to us when we notified his daughter that Papi was dying. My mood kept changing, from feeling pride for all I had done for Mami and Papi to resentment for all I had to do for Mami and Papi. I wanted some recognition for my sacrifices, and then I wanted to stab myself with the letter opener on the desk for thinking these thoughts.
RUNNING ON NERVES
The vigil of the body was so unnecessary. For 4 months, we had viewed it, in its pseudo-alive state. As the viewing started, everyone is asking me for my sister and brother. I tell them Maritza is on her way, Hector who knows. I had not seen him in over 12 years, since he moved to New York and I started school. People who had not come to visit my Papi in the 17 years he was ill complained they could not see him for a final time, since the casket was closed. Perhaps they found a way to maintain contact with us, or through someone who did, or through someone that knew someone that did. The thing is, the whole town showed up, and I was so hypersensitive that every inappropriate comment sent me to the bathroom to bite my tongue or made me laugh so hysterically that it made people give me the pity look, thinking the sorrow had sent me to a neurotic state. People asked me if I had children and lamented that Papi never got to have grandkids from his beloved girls. I thought to myself, I would have had to have a baby when I was 15 for him to have realized it, but just nod at them. So many times I wanted to tell people to go to hell, but did not for the sake of manners. I did not want to be unkind, I thought. I did not want to tarnish Papi's memory. More than anything, I think I was too exhausted to synchronize my reactions to the actions of others.
Later, at home, we all talked about the comments people made, about what people said about Papi. Mostly it was good, about how Papi had done this or that for them. Most of the memories people had of him were of jokes, of laughter, of his famous sayings, of his playing the cuatro, or the guitar, or the accordion, or singing. A great number remembered him breaking up fights, something I did not know about. One cop told us about how Papi saved his life, capturing someone that was about to shoot him. Many people remarked about us taking care of him so long. Mami came out like a saint, taking care of her husband for so long. Even us girls, who moved away from home, redeemed ourselves at the end, tending to Papi's agony and death. I was OK, but so sad because of the end of activity. I really had to go back to Pittsburgh, take my job back. I did not know it then, but our financial picture had grown bleak. Bills had gone unpaid so we could pay for the medical care not covered by Medicare, which is a lot, especially under a Republican president.
THEN IT HIT ME
After Papi's death, everything would topple me. It was the worst of times, damn; it was indeed the pisser of all times. It was as if I had lost my measure of “the worst thing that could happen.” In my mind, all those years since Papi was sick, the worst thing that could happen was that he may die. Once he did die, I walked around in circles, not knowing how to begin things. I began to experience terrible stage fright (something that had always eluded me, an incorrigible ham), feel all sorts of insecurities. My spirit had been trapped and I felt like a different person. I gained more weight, up 30 pounds. I never cared about weight, because I thought I was attractive. I felt heavy, though, literally. When people wonder why overweight people do not exercise, I am afraid we ignore the simple reason of gravity. I stopped going for walks and playing tennis, and began running out of my home and running back, glad to be back on my sofa, sliding down the pit, wanting no witnesses except for TV people.
I was depressed, and did not want any of my friends to know. I blocked everyone from my heart. Tom was allowed only because he lived in the house, and he made sure that I at least felt safe in my house. He did everything, and watched me. At night, I would jump up, thinking I had to suction Papi's lungs. Tom would hold me and remind me Papi was in heaven now. This happened for months. Then, I started to see his morgue face in my sleep. I would wake up crying, and start to pray, pray, pray. I prayed all the time. I prayed with fervor. It did not help. I thought God was not listening.
GOD IS MAD AT ME
As part of my job, I was to travel throughout Pennsylvania, conducting HIV training for health professionals. I did training in prisons, juvenile facilities, hospitals, community clinics, farm worker camps, and of course, universities. I did all these things well, and still I felt God was not listening. Maybe there was a limit of how much you could pray and I had reached it, and God had put me in a hopeless pile. I would go home, eat portions to feed 5–6 people, and lay down, cover myself, drift into sleep around 8 p.m., wake up near 3 a.m. with nightmares, and pray the rest of the morning, until 6:30 a.m. I did this for 8 months.
Sometimes you hear people wonder why so and so did not get help, how come people are afraid to tend to their mental health. A reason why I never did was that I did not think I needed to, since I was functioning. I was still grieving Papi. I did not have anything else wrong, I thought, and I am a social worker! One day, my friend (and boss) asked me if I went to therapy. I told her no, as curtly as if she had asked me if Tom was impotent. She told me she thought I was depressed and that I needed to go to check it out. She was a Pittsburgh native, and knew of a Latina therapist. That is the only reason why I went. I thought I was the only Latina in the area.
PTS AND DEBUNKING THE ROCK
Paulina diagnosed me in our first session with depression due to posttraumatic stress (PTS), asked me to arrange it so I could come once a week, and took no excuses. PTS is what was keeping the memory reel going at night, she clarified. She was very tough. She made me stop feeling like a rock, and more like a person who took up room and resources, without apologies. I stopped my sister from making unreasonable requests, my husband from taking all my shit, and myself from sedating myself with food. It took 2 years, but finally I learned to live with the whys. Why did a person as witty, caring, and special as Papi get such a cruel disease? Why didn't my older sister and brother prepare financially? Why did people think it was inappropriate to grieve longer than the 2-week bereavement that is part of employee benefits? Why can't I forget the morgue Papi?
WHY, BECAUSE, POR QUÉ?
Regarding why would Papi get this disease, I can say now after all these years that at least we were better able to manage than other people are. But most of all, at least he gave himself to us fully before the Alzheimer's disarray. He had been a good father and (I think) husband, so we were able to feel reciprocity in his greatest time of need. As for myself, he filled me with belief in myself and love for the time his brain was not sick. I learned from him what I wanted “my man” to be like. He gave me such acceptance, and through that, I developed great confidence. I see what happens to girls that do not receive this essential gift.
Why weren't my siblings prepared? Because they were not ready to let go of Papi. I realized this was why they never planned anything, and everything was a surprise to them. They had very different relationships with Papi, I have come to understand. I was not ready to let go of Papi, but also I was the better off financially, the highest paid, and the frugal one. Why did people expect me to get over death quicker? This is often the case, when one experiences a long heralded death such as Alzheimer's. People think you should have been prepared emotionally. I learned to turn a bit of a deaf ear to this nonsense, that as long as communication with teachers or bosses was clear, if I checked that I was performing OK, I did not need to pay attention to insensitive comments.
The important thing was to live with integrity. This is the biggest sentinel lesson of my life so far. I was not living with integrity, being the strong one, the one that handled everything. I learned to do what I could, not to dehumanize myself by being the responsible one, and then wonder why people did not realize I had feelings. If you act like the rock, you get stepped on. Also, as Paulina taught me, I had to stop being like the carts that sell stuff on the street in our countries of origin, with something hanging off them from little nails (from bedpans to toys). She advised me to carry only the essentials, and let all else off.
The answer to the last question, why can't I forget the morgue Papi, is that it was just one more picture of Papi. In fact, it is one between just him and me, and Ortiz. It was just one more stage for Papi, nothing more. I wish I had not had to, but I am OK with it, even as I quickly remember it now.
Through the years, I have answered the questions, and lightened up in many ways. I have opened myself again, enough to have a child. I decided the best way to honor my father's life is to emulate some of the ways he lived his: laughing when I feel like it, saying what I mean most of the time, and taking the time to be in the moment (especially with my child) as much as possible. I make choices based on integrity, and have hurt many people because of that. No longer a people pleaser, I say no with compassion, but with clarity. My father's voice comes to mind every single time I have to do it. His death woke me up to this basic human right, and I am thankful. (April 2008)
AUGUST 11, 2008: MI SUEÑO (MY DREAM)
When my daughter turned 12, ready to dive into the wilderness that is the American teenage years, it felt as though a different chapter of my life was about to begin. I was happy, living my dream of teaching worthy students, being an academic, and residing in Tallahassee, one of the most beautiful cities I have ever seen. Tom, Maria Cristina (named after my mother), and I loved the area and its people, from the first time I brought them to check it out after I felt a tenure track teaching job was going to be offered to me. I had wanted to become a professor I think always, and feel as though all my steps and decisions were somehow related to this dream. An academia latecomer, I had let around 5 years pass in between all my degrees, and worked in public health practice, from universities to the premier federal public health agency (the Centers for Disease Control and Prevention). I had gone from Pittsburgh to Atlanta fast, from the north to the south of the United States. While my energy level fits better in the north, my appreciation for warmth and personal touches is most at home in the south. Since I gave birth to my daughter in Decatur, Georgia, we will always have a special connection to that place where we nested my María Cristina, born in the Olympic year 1996.
All along, I had asked and even begged Mami to move in with us. My sister asked her to move in with her and her husband in Mexico also. Mami always expressed worry about what would happen to her house, and to her brother and sisters. Mami had traveled more extensively than my father, but was a Puerto Rican, proud and tall, a tree rooted in her islita. This always made me laugh to myself, because most Americans think everyone wants to come here to live, and yet I could not get my mother to consider it seriously. Our conversations on this topic were always superficial, as she always brushed off the possibility of coming to stay with me in the U.S.
AWAKE
One day, Mami had decided to go to a new doctor who was covered by her new Medicare Advantage plan. Among the first things this female doctor did was a breast exam. It had been many years since Mami had a mammogram done, despite my pleas for preventive care. While conducting the breast exam on Mami, she had felt something hard in her left breast. This put her in a spiral that has not yet stopped, 7 months later.
A TREE GROWS IN TALLAHASSEE
Unfortunately, Mami did have to move, at breakneck speed. She had the mammogram, a biopsy surgery, a second surgery to readdress the area, and then she had to move in with me. There was no way to have cancer treatment on her own where she lived, because of transportation and support issues. So the beautiful tree had to move roots and all to Tallahassee. While Tom, Maria Cristina, and I had always hoped she would move in with us, it happened under the worst circumstances, where I felt like we were just a notch above death. I managed to give those feelings an appropriate context, one that allowed for complete understanding instead of knee-jerk reaction. I never would have done that before Papi's death.
We had to add a shower and closets to make our solarium her new room, or rather, suite. This way, her bedroom was downstairs. Then we had to abide by new construction codes and add smoke detectors throughout the house. It was a crazy time, because while all that was going on I was also selecting health and dental insurance, hematologist oncologists, and primary physicians. Meanwhile, my sister was ending things in Puerto Rico, taking care of forwarding matters to Tallahassee.
From my experience with Papi, I knew the worst time for me is after the storm. While I seem to be fine and react well during the storm, it is after the storm that I begin to look for my narcotics. I made sure I weighed myself every day, looking out for the addiction to reemerge. Sure enough, I started craving the dough again, craving the sugar and chewy textures that dulled my pain best. In the first month after the diagnosis, I gained 5 pounds and began to harbor shame about it. It was time for connectedness.
A ROCK NO MORE: IN CAME THE CAVALRY
I am less secretive about my circumstances. With Papi's illness, I used to not tell many people about it. Now I tell anyone who asks (to the degree that I am comfortable), and take their interest as a positive aspect of community life instead of taking it as an unforgivable intrusion.
At work, I told my supervisor everything, and she could not be more sympathetic. She understood that family came first, and she would support my having to attend to transactions regarding my mother's care. She soothed me with kindness. In these circumstances, there was no better way to keep my sanity than to think that they were OK with my circumstances, that they knew I would do my work.
I told most of my students because my experience is pertinent to their learning voyage: Their reality includes me. Some coworkers would ask scientific questions (Is it metastasized? What stage is she?). These questions used to be tricky at the beginning because they bring back diagnosis day memories, when one is confronted with that scientific lingo. Yet other colleagues claim they know what you are going through, except they have been through much, much worse, and show little compassion. I wish someone had been kind to them, but kindness is not always in stock. In the end, the vast majority of people show they care and want to know how they can be supportive, with cards, calls, care packages, flowers, balloons, even a flan. There are not enough thank-you cards for me to go through. Prayers had been slung to heaven, as Dr. Angelou would say.
I told all my friends about the cancer that had come into our lives, about Mami having to move in, about my lowest wormy feelings about this crisis, and more. My friends, scattered around the country, and sometimes the world, were always checking in on me. One came to see about me, to make sure I took a few days to go to the beach with her and her daughter before Mami came. I talked, told, cried, felt big and small, grew and shrank, complained about and expressed pride for my new caregiving role. My weight went down and stayed the same.
My sister also had to bear some of the burden, having to go for Mami's second surgery while I returned to Tallahassee to help Tom deal with the bathroom and to select the best health care possible. She also helped pay for the construction and continues to help with the monthly insurance premium. In December, she will be coming for Christmas, and also letting me have some time off with Tom and Maria Cristina to decompress and be relaxed. Unlike the experience with Papi, this has been a group effort, and I am happy to report that although there is no good way to go through this experience, it is going better. My cousin Cuca, my aunt Carmen Ana, our neighbors Doña Celia and Doña Hortensia all check on Mami via the phone.
The relationships of my life make me feel full. Connectedness is my antidote to anxiety.
These two experiences, my father's death and my mother's illness, have many parallels. My age has increased in parity with my ability to defend my basic human right to peace. Happily, I can remind myself of past pitfalls, and even help others to at least detect them. These experiences inform my career, parenting, marriage, friendships, and even more than that. While I will never be happy for having gone through the pain, I am certain that the feeling only lessens as I am thankful for the worst (seeing my Papi in the morgue, seeing my Mami's scars and bald head). I feel like I went through these trials to be able to teach my daughter, my students, anyone interested in learning about the burdens and bounties. The burden is grappling with intermittent bouts of being lost in how to proceed, the bounty is the voyage and its legacy. I am thankful for it all.