The only thing I understood about AIDS came from watching the Ryan White Story on a made for TV movie with the kid from that Amazing Stories show. I knew it was bad and that it could kill you but I had no idea what a person with AIDS was, looked like or what it exactly meant. When I found out Bobby had AIDS, he had already had it for many years but I was not told because I am the sensitive and sheltered youngest child. I don’t exactly remember when I was told or when I fully grasped what his AIDS status meant for him. I never talked to Bobby about his health, only towards the end when he was battling addiction and we were desperately trying to help him. About five years ago he sort of disappeared, moved further south and started taking pills. At first it was funny, him taking my moms vicodin, laughing through his confession and always getting more and returning them to her. I did not see the transition into harder drugs but I could guess that it went pretty quickly, as with his mental and physical health. They say you do two things with heroin; you either stop taking heroin or you die. Bobby has a huge group of loyal friends, some since grade school, who have supported and loved him from day one. My sister Wendy met Bobby when they were twelve years old and I was just a small baby. He used to give me baths in the sink, something he loved telling boys I was dating. He was my brother- he was my family. I have always called him my brother because that’s what he was to me. We loved each other but fought like hell too. I would steal weed from him, he would call me fat and we would sing Madonna in my car and dance as my boyfriend at the time rolled his eyes. My dad called him the gay son he never wanted. I went through photo albums and every single album had pictures of Bobby in it- Christmas, dad’s birthday, Valentine’s Day, just hanging out, boating trips. I knew Bobby was not doing well for a few years, with a couple awkward interventions with friends and family, a failed stay at rehab and people giving up and not knowing what to do. I don’t blame anyone for how they reacted to Bobby’s addiction and I know many will hold so much regret and guilt. I know I will, very deeply in my soul. The one person who literally stayed with him till the very end, was my sister Wendy. You could never get a hold of Bobby; he either did not have a cell phone or just would not answer. Wendy would just show up at his house and knock on the garage; “Bobby its Wen!” That’s where he was living, in the garage, surrounded by huge amounts of antiques, collectables and thrift store finds. He always loved “things” and it only got more involved as his addiction progressed. If you need a candleholder, a mini wooden ship, a 90’s era wedding dress, a vintage creepy cabbage patch doll or fake wood burning stove; he had you covered. I would get updates from Wendy; Bobby is 90 pounds, Bobby has pneumonia, Bobby is in the hospital, Bobby is coming to Santa Cruz. The first time I saw him after being apart for two and a half years was shocking. He was thinner than me, frail, quiet and just not himself. For the longest time I thought it was the drugs making him look that way. Though they did not help, it was his decision to stop taking his AIDS medication that was the real factor. I kept thinking, he will stop taking drugs and just get better. Wendy and I went to see him right before summer; he had just got out of the hospital, needing a blood transfusion and being released the next day. That’s what Medical gets you I suppose. Wendy and I made several phone calls, as did Bobby, trying to get in touch with doctors and get him his AIDS medicine. We drove to the pharmacy for him and spent over 600 dollars on just three medications. He tried to get back on an AIDS assistance program and had to leave a message. He said he didn’t want to die. Those words echo in my head over and over again; I don’t want to die. Of course even in that grim moment he was funny, saying after, “I’m sorry for this dramatic message” and repeated, “I just don’t want to die”. Even though hearing that, I asked him, do you want to live, do you want to get better? He said yes. I started searching for rehabs, willing to pay whatever it took to get him in there but no one would take him in such a medically fragile state. The focus switched to just getting him well enough, for him to take his AIDS medicine, to take methadone instead of heroin and get his health back on track. He promised to take his medicine. Wendy and I went back a few weeks later, right before his 48th birthday. He looked a little bit better, a little bit stronger and a little bit more coherent. He promised he had been taking his medicine and said he was not taking heroin but methadone instead. We went and got taco bell and brought it back for him. I did not know that our last meal together would be cheap fast food in Hollister.
On my birthday I asked Wendy if she had heard from Bobby and she had not but was thinking about going to see him the next day. That was the day he went to the hospital having a hard time breathing and actually turning blue. They tried to help him but he could not catch his breath so they had to intubate him. Eight days later he would be gone. Wendy found out on Wednesday and headed over after work. She stayed with him for several hours and called me later that night. She said I should come see him and it seemed urgent. I took the day off and headed down to Gilroy. I was not prepared at all for what I saw and heard. As I walked in the nurse was telling his father and brother that there was zero chance of recovery. I was coming from a place of not knowing the severity of the situation but either way, I was trying to stay positive and hopeful. She crushed that immediately though I know she was just being realistic. When I saw Bobby for the first time it was an image I had always feared but couldn’t exactly picture perfectly in my mind. Wendy knew Bobby better than anyone and knew he would not have wanted this. She leaned in and told him it was okay if he wanted to go, to let go of his life and that no one would be mad at him. She left me to be alone with him and I selfishly told him the opposite. I told him to please hold on, that I could not imagine my life without him and that I was not ready to say goodbye.
I want to say he died peacefully, which comparatively to most, he did. Yet what is peaceful about a person gasping for air, so swollen from fluids and unable to move their body? What is peaceful about an infection raging through your body, with tubes protruding out of every orifice and a dozen different medications continuously pumping into your body? What is peaceful about bedsores, catheters, needing to be cleaned by strangers and having your loved ones suited head to toe in scrubs and breathing masks? I want to say the whole process was peaceful but it was a nightmare, a living, barely breathing nightmare. If peaceful means he did not thrash around screaming in pain, then yes, it was “peaceful”. Everyday I would wake up with this drowning sense of urgency to get to him, to be with him and to find out any sort of update about his status. I would scold myself for not feeling this same sense of urgency years ago when he was first struggling with addiction. I would sit there for hours, sometimes by myself but most times with my sister Wendy and some of his closest friends, Jacque, Suzanne and Celeste, just staring at him. I would stare at his face, then his vitals, his face then his vitals, is the nurse coming, vitals, face, vitals, nurse, no, vitals. I figured out what every number meant on that machine, what the number should be, what his “normal” range was, when he was lower, when he was higher, when he was in distress, what this beep meant, what that horn noise referred to, when he was more alert, when he was sleepy, when he had peed, pooped or needed to be cleaned and turned. One day he had improved a little, the next day he was constantly gagging, one day he was unresponsive, the next he was looking at us directly in our eyes and moving his head. Sometimes we would just sit there quietly or stand holding his hand and rubbing his head, we would talk and share memories, or play music, sing to him and dance around. We would ask him questions we knew he couldn’t verbally answer, put our hand on his chest to feel his heart beat and we would tell him a million times a day, “we love you Bobby”.
For days we were told that his body was just too sick, with viral and bacterial infections ravishing him, his heart so weak that medications were keeping it beating, his left lung had collapsed a day before and they needed to insert a tube into his side, his right lung was starting to collapse as well, his organs were failing and they could not figure out why his body was motionless and unable to respond to pain or stimulus. Everyone close to him knew that he would not want any of this. Bobby was a 1,000 thread count sheet type of man, with fancy linens, expensive hair products and was always, always clean. These hospital sheets were absolutely not up to his high standards and his tolerance for pain and suffering was non-existent. Even the nurses had a hard time watching him because with all their experience dealing with different patients they knew, Bobby was suffering. Yet how do you possibly decide to push for someone’s death? Further, how do you try and convince not only yourself but also his family to let him go? Wendy was Bobby’s voice and she knew him better than anyone and was the go between his broken and divided family. She had to look his mother in the eye, a woman who raised her sons on her own, with many faults that stemmed from having too much love for her children, and convince her it was time to let Bobby go. She said she felt like she was murdering her son and I cant imagine being a parent and making that decision. Further, I can’t imagine Bobby’s closest friends, who adored him, having to push for that decision. I wanted to be there for Wendy as best I could but I felt like she was more so there for me, stronger than me, so selfless and like a solid rock in a rushing river. I was the little pebble that could hold on for a bit but then would get washed away with the next heavy rain. It was decided that Bobby’s breathing tubes would be taken out the next day.
I knew that today was going to be the day my brother was going to die. I went to my closet and wondered; what do I wear? I can’t wear those pants because I love those pants and every time I wear those pants I will think of this terrible moment. I don’t want to hate those pants. I had created a playlist of Bobby’s favorite songs and we planned on playing them as he passed. I tried to go to work but thinking about Bobby laying there by himself was too much. I drove down, like I had so many days before and was there alone with him for a couple hours. As I walked up to his bed, he picked up his head and stared into my eyes. It was the most responsive he had been and I immediately did not want to go through with letting him die. I told him that we were going to let him go today and I pleaded for him to give me some sign if he wanted that. He just stared at me for a couple moments and then looked away. I started playing his music for him and when a song came on that was too sad, he would grimace and look like he was going to cry so I quickly changed the song. I turned down the volume and he seemed to drift to sleep with the song “Songbird” by Fleetwood Mac. I asked his nurse for an update and she confirmed that he was more responsive today, able to follow close your eyes and blink commands but still not able to respond with his body. He had stayed the same or gotten worse in most areas but his white blood cell count went down a little bit which meant his body was starting to respond to the antibiotics. Are we making the wrong decision for Bobby? The nurse could not or would not answer me. Later that day the doctor spoke with Wendy and his father Gary, laying out everything, the status of his organs, the infections, his collapsing lungs, his weak heart and Wendy, his parents, family and friends felt that letting him go was still the appropriate decision. Beyond his failing body another huge factor was that in two days they would need to do a tracheotomy and feeding tube and he would then be transferred to “long term care” which meant some state funded home. The tubes would further compromise his health and he would not be receiving the high level of care he had been receiving in the intensive care unit. He could languish there for days, months, even years with no real solid possibility of recovery. Again, Bobby would not want that. Everyday he was suffering and without those machines and medicines keeping him alive, he would be able to make this decision on his own to go. So it was set, Bobby would die today and we all felt like our stomachs were in our throats.
Everyone, his many family members, some of his closest friends, my parents and a priest all crowded around him, in our head to toe hospital gear waiting for the priest to read him his final rights. I have no idea if that’s exactly what he did, as I am not religious and had no idea what to repeat in unison as everyone else did. More than anything I wanted Bobby to not be afraid as he looked at us all around him. His mother kept repeating over and over again, that she promised to be with him soon. The nurses asked us to leave so they could take his breathing tubes out and that they would come and retrieve us when he was “ready”. They let us know he was ready; ready to die I suppose. I was the first one to reach outside his room and the nurse reported, “He’s responsive.” I looked at her in horror and asked, “What do you mean?” She said, “Well, he’s letting us know what he needs.” He’s talking? I was mortified. We are killing him and he is talking. That repeated in my head over and over again; we are killing him and he is talking. I had to remind myself in that moment, that even if he could solve a complicated math equation, his body was giving up. We all surrounded him and I just could not help but wonder if it was frightening for him or peaceful. He was managing to answer yes and no questions but it was chaotic, people were talking over him and I tried desperately to hear his voice. His last words, which he could barely get out were, “I love you”. Those words, that voice, that face, those eyes will be burned into my soul for eternity. He was breathing on his own without the machine, though not very well, and they gave him a constant drip of morphine and injected him with Ativan. They were waiting to give him more so we could have a chance to talk to him but he could no longer get any words out. They said he could last for days like this and I was horrified even thinking of that. I looked around him and all the medications that were once there, keeping him alive were gone as well as the “food” he was receiving. Our health care system is so barbaric, where they make killing yourself illegal, as well as not allowing hospitals to help people die, but they are just fine with starving someone to death. After about 45 minutes of him off his breathing tube, the majority of people left except the five women who had stayed with him every day, for the last seven days straight- some of his closest friends, Wendy, Suzanne, Jacque and Celeste, and me being his little sister. His vitals went back to before his lung collapsed, his breathing was a little erratic but stayed around the same number for some time, his heart rate was the same but his oxygen absorption went down. For hours again, I stared at his vitals, his face, his vitals, his face, nurse coming, vitals, face, vitals. Legally the nurse was only allowed to give him so much pain medicine at once, so she came in a couple times and gave him more when she could. Again we played him music, laughed, cried, held him, told him it was okay to let go and again, over and over again we told him how much we loved him. He would try to talk but just couldn’t get the words out. We were soaking a piece of foam on a stick and putting it into his mouth. He was able to bite down and get some water and relief for his sore mouth. His breathing became a little bit more erratic, getting to a much lower number but still jumping up from time to time. The nurse came in and gave him his last dose of Ativan and within a few minutes his heart rate changed. Wendy looked at me and said she felt like he was going to die soon. Five minutes later the nurse came in, looked at him and said, “he is close now”. They were right. Very suddenly his heart rate dropped by fifty beats but his breathing remained steady for a minute or so. His heart rate dropped so low that the machine was not even able to pick it up but he continued to breath, with longer and longer pauses in-between. I have never wanted someone to live and die at the same time so badly- one part of me wanting to start chest compressions while the other part of me wanting it to just end. We had been dreading this moment for days, accepting it, hating it, fearing it, fighting it yet also fighting for it but in that moment I was still not prepared to watch my brother die. I had cried, sobbed so hard my body shook, I had hoped with everything in me for a miracle, imagining our family on an episode of Unsolved Mysteries with that mustached man who replaced the legendary Robert Stack, but he died as well so maybe some other miracle show on some weird network channel. Until the very end I had hope. Until he took his last labored breath and was lying there, just a shell of who he was, I was thinking; miracles happen everyday. The miracle did not happen. Instead we stood there, staring at his lifeless body, loud beeping echoing around us and wondering- is this it? Is this what death looks like? It took Bobby over four hours to die, it was almost midnight and we were all exhausted. I did not want to leave him but did not know what more I could do in that moment- he was gone. We all just watched someone we love so dearly die in front of us and now we just drive home? It seemed so wrong and weird but what was the alternative? I thought about getting in my car and just driving south for hours, parking when I was tired and driving when I wasn’t. I had no clear destination or motivation but I assume I just wanted to drive away from this harsh, vomit inducing reality. Instead I drove home, showered and laid in bed trying to get the image of what I had just witnessed out of my head. While I lost my brother, my sister lost her best friend. The bond they shared is something I don’t think I’ll ever experience. Further, he had so many friends who shared their lives with him for so many years. He was such a huge personality that his absence is so apparent and just tragic. So many people, friends and family will suffer because of his death- we are not alone in our misery.
Hearing that final “I love you”, the smell of that hospital room, the horn noise when his breath was out of sync, the look of him gagging, his wide eyes staring at me, the feel of his swollen skin, which was like an overfilled water bed, the mala I placed on his stomach, the feeling of that breathing mask against my mouth and nose, the beeping of machines, the feeling of his heartbeat against my gloved hand, the comfort of my sisters arms, the motion of his head and body as he gasped for air, the coldness of the room, the sorrow in the nurses eyes, the feeling of the plastic gown we were forced to wear sticking to my sweaty arms, his sunken darkened face after he died, the sound of my sister sobbing, the songs we sang to him, our laughter, the softness of his thinning hair, his final breaths, moments and scenes that will both haunt and console me forever. I was not ready to say goodbye, something I had written in a card I brought him that first day, something I had told him over and over again through tears and sometimes laughing anger. I held onto him for dear life until he let go. I had to say goodbye. I had to let go. I was not ready but he was and so it goes, that with life, comes death. You’re a butterfly and butterflies are free to fly, so fly away, fly high, goodbye Bobby, I love you.
gravesites - 03.03.17
The first time death affected me personally was when my sister was killed. I was 13 going on 14 and had never really experienced death beyond losing a family dog that I wasn’t very close to. Even then, my sister Crissy was cremated and we still have her ashes. I had never experienced visiting a gravesite, where you stand there knowing your loved one’s body was under the earth you were mourning over. I had visited the site where Crissy and her friend’s bodies were dumped, which now had two huge crosses constructed and felt that sick feeling of imagining her decomposed body lying on the earth I now sobbed over. I never thought about how I would feel standing over her actual body dead and deep in the ground.
As I hiked up that steep hill my heart was pounding and stinging, which I could not determine was because I was out of shape or I was about to visit where we buried Sinister’s body. I felt anxious about going but also felt this need to visit and see it again. It has been almost three weeks since we put his body into that hole and I wondered what I would find. Had an animal dug him up and used his body for food? Would the flowers we left be alive and blooming? Would I feel him near me? As I walked around the path I could see the hilltop in the distance and it was so beautiful yet I cried and felt so sad. I was listening to the Howard Stern show the whole way up, avoiding the feelings and trying to trudge along. As I got to the bottom of the hill Sinister was buried on top of I turned off what I was listening to and made my way up. The closer I got the more anxious I felt and I stopped several times to just cry and clench my aching heart. I finally got to a point where I could see the fresh dirt and did not see much of a disturbance and kept walking.
The earth had settled on top of him as his body is decomposing and the flowers we left were dead and dried. All I could muster was “oh sinders…” I had this plan to sit and write or meditate next to his “area” but there were swarms of little bugs attaching themselves to my arms and back. I walked around and around and shooed them feeling defeated- “well I can’t stay here, there are just too many bugs”. And I knew right away that I was doing what I always do- avoiding the pain. I just keep moving. I keep moving through life because if I stop the pain will overcome me. And as I was pacing around Sinister’s gravesite I became eerily aware of how much these little bugs were showing me. They symbolized all the pain I have experienced and every time I stopped they attached themselves to me, clinging on for dear life and would only let go and disperse once I started moving again. So I stopped moving. I sat down on some rocks, very aware that I kept a certain amount of distance from where Sinister’s body was.
I sat and I cried. I wrote, I cried, I thought of things, I laughed, I blew my nose and I just felt it. The sadness. The pain. With every part of my body; I felt the hard rock under my butt, I felt the pen in my hands, I felt the hat on my head, I felt the sun and warmth on my skin and I felt the pain in my heart. And I no longer felt any bugs landing on my skin. They eventually went away and I sat with that peace for a bit. I stood up, brushed myself off and walked over one last time to that spot of land. I felt grateful that we could offer Sinister’s body to nourish the earth below as he nourished our lives for so many years. I put my hands on my heart and then onto the ground, touching the fresh flowers I had laid there. As I walked down the steep hill carefully, I no longer felt anxious or worried but the sadness remained deep in my heart.