“The smell of hospitals in winter
and the feeling that it’s all a lot of oysters but no pearls.
And all at once you look across a crowded room
To see the way that light attaches to a girl.
A long December and there’s reason to believe,
maybe this year will be better than the last.
~Counting Crows, A Long December
We drove down and I met the rest of her family. It seemed like she had about ten brothers (only 5) and I was warned that every one of them was meaner and tougher than the rest. After checking me out a little bit they were cool, sensing that I wasn’t trying to big time anyone, but also could still handle myself and knew where I was. The day turned out to be fun as we all joked around over while eating Carnitas and drinking cold beers. I got to hear stories about how crazy they used to be back in the day and I got to meet Lupe. It was only briefly – he was a hulking, muscular tough guy with dark features, half Mexican and half Filipino. When we were introduced in the kitchen he just looked me over and grunted a quick hello, like “Who the hell is this preppy-ass white boy?” But I found out that was his style – he was always a man of few words.
On April 28, 2007 Jodi called me late in the evening and, with panic in her voice, gave me some bad news. The details were still sketchy, but apparently her brother had suffered a stroke. He was in the Intensive Care Unity at St. Joseph’s hospital down in Stockton. “Which brother?” “Was he going to be OK?” I asked. It was Lupe, and no one knew the details yet, but it was bad and he might not make it.
I offered to go to the hospital with her for moral support. We drove down to Stockton into a massive medical complex that took twenty minutes just to park, and eventually found the ICU and were checked in. We had to sterilize ourselves by scrubbing our hands and arms and putting on hospital gowns, plastic over our shoes, covers over our hair, and surgical masks. I’ll let you know right now that hospitals freak me out. Seeing people sick or in pain freaks me the hell out. I can bleed all over the place and take a ton of pain myself and just laugh it off, but seeing someone else in bad shape really gets to me. Lupe wasn’t in a room but in the middle of a big chamber with glass walls. He was on a bed surrounded by tubes, IV’s, electronic monitoring devices, and artificial breathing apparatus hooked up all over his body. It looked like a giant white electronic octopus was taking him over. His brothers, their wives, children, and a few cousins surrounded him. It was my first time meeting a lot of them who hadn’t been at the BBQ. I felt awkward sharing that situation with them, seeing them at one of their weakest, most pained and vulnerable times in their lives. I didn’t know where to look – I didn’t want to stare at Lupe and I didn’t want to watch them while they cried, I didn’t want to be too chatty with them, but I wanted to show respect and offer my sympathy. So I just nodded a lot and looked down, speaking in hushed tones. But mostly I just held Jodi’s hand so she would know that I was there.
Lupe didn’t look like the same guy I had met a few weeks before. His skin was pale, almost green, and his eyes were deeply sunken. His only signs of life corresponded with beeps and hisses of the machines that barely kept him alive.
We went out into the waiting room. Jodi and her family discussed the situation and tried to piece together what little medical information they had. Lupe suffered from hypertension - very high blood pressure, which was an unfortunate family trait. He didn’t always take his medications because they made him sluggish and weak, interfering with his physical work as a grocery manager on the night shift. That Sunday night he was feeling feint, so he went to the emergency room. The doctor that saw him checked him over and his blood pressure was an astronomical like 320/180 – the highest recorded blood pressure the paramedics have ever seen. The doctor sent him home with orders to go see the vascular specialist in the morning. Lupe went home and soon after collapsed and had a massive stroke. The medical diagnosis was an aortic aneurysm – because of high blood pressure his heart couldn’t handle the stress of pumping blood to his body. His heart literally exploded in his chest. They rushed him back to the ER for an emergency procedure. Six hours into what should have been a twelve-hour procedure Lupe lost oxygen to his brain, causing an Anoxic brain injury. He also suffered from a L1 Incomplete spinal cord injury. I’m still not sure if that was during the procedure, when he fell, or how that happened.
They gave him less than a 10% of surviving. IF he made it through the first few days they were really worried about the damage to his brain. Lupe was 33 years old, a former football star and barroom brawler, weighed 215 lbs. of solid muscle, and could bicep curl a whopping 220 lbs. He was the father of three children and his girlfriend was pregnant.
The family took shifts sleeping on benches outside the ICU. Though I didn’t know them all that well, I could tell that Jodi was stepping up as their leader and spokesperson. She was educated, could talk to the doctors, and also organize the family. There wasn’t much I could do - I offered to get a pillow out of the car, to grab them food from the cafeteria, I gave up my seat for someone. And I could hold Jodi’s hand and let her rest her head on my shoulder as she caught five minutes of sleep, exhausted and drained from crying.
The first days everyone was still operating on adrenaline and the shock of disbelief. Jodi spent a lot of time in the ICU, driving the 90 minutes back and forth to Stockton to take care of her two teenage kids, her house, and her real estate business on no sleep. Eventually Lupe’s condition stabilized, but that doesn’t mean it was good. He was in a coma. It took 22 machines to keep his heart pumping, his lungs filling with air, and to feed him. Over the coming weeks the family took turns visiting him but somehow Jodi always ended up doing the most. I went with her several times to visit Lupe. Colorful crayon drawings of houses and trees and suns with “get well dad” and “feel better Uncle Lupe” started covering those glass walls. A Raiders blanket lay over his feet.
I was falling behind on my reading for Law School, but knew I could put my foot on the gas peddle when things calmed down to catch up. But Lupe wasn’t doing well. He was still in a coma with no signs of life. The doctors said that he had no brain function at all, and someone insensitively used the word “vegetable.” Jodi wouldn’t accept that and prayed for him to come back. The weeks rolled into months, and we had a new hospital as the backdrop to this strange play. More often than not our “dates” consisted of going to visit Lupe in the hospital, eating cafeteria food, and going home to pass out, exhausted and emotionally drained, before we could even hit the bed. There wasn’t much I could do. I felt out of control. This wasn’t a situation I could work at, or fix. But I kept showing up, and hugging her as close as I could.
The doctors concluded that this catatonic state was permanent and he would never get better. They encouraged the family to start discussing “letting him go.” Their options were either to pull the plug on his breathing apparatus or stop utilizing his feeding tube and let him pass away naturally with the consequences. Brutal options. Jodi disagreed. Contradicting millions of dollars of treatment, a team of accomplished surgeons with PHD’s, and decades of medical practices, this little feisty girl from Stockton said she saw something in his eyes. Something that moved and was alive when she sat by his bed late at night and talked gently to him, her tears landing on his pale arm. She swore she saw a glint of recognition. Hope. The doctors thought she was just being emotional. Often times families can’t wrap their heads around letting go of a loved one and don’t make clear decisions. Their analysis sounded cold and condescending, but I understood that that was there job. I honestly thought it was probably the best thing to let him go. He’d been in a coma for months. He was hooked up to so many tubes it was ridiculous, and the consensus from the doctors was that he was brain dead. Jodi and her family were operating on no sleep and a whirlwind of emotions, making decisions on blind faith. I did what I could: I showed up, I handed her a mask and gown, I bought her lasagna in the hospital cafeteria, I made her laugh with my stupid jokes, and I drove her home when she was too tired to see straight, when all the lights blurred together and looked like they were leading nowhere.
The family did not pull the plug. There was a lot of talk of faith and God’s will. My silent opinion was that it wasn’t God’s will that Lupe was hooked up to 20 machines just to stay alive, and that there was no possibility of recovery and a good life. I told a friend back home that if I was ever in that situation to definitely pull the plug. But the family chose not to, and kept praying.
Lupe remained in a coma but another problem emerged – bed sores. I had no idea about this, but I guess one of the dangers to bed-ridden patients is getting bedsores, or Pressure Ulcers. Think of a two hundred pound man who is completely immobile, who can’t even shift his position inches, laying there day and night, his weight is compounded onto exactly the same spot. The medical staff can turn him as often as possible but mostly he needs to stay on his back. The weight causes sores that start under the skin; particularly those areas that are bony, and just get worse as the pressure mounts. They do not heal and become a medical nightmare. Lupe developed Stage IV Pressure Ulcers– the largest, deepest, and most dangerous classification of bed sores, on his sacrum – right over his tailbone. He literally had huge gaping holes in his skin, tissue and muscle that extended all the way down to bone. Freaking nasty, right? Not only does it cause severe pain to the patient, but the bigger calamity is the risk of them getting infected. Of course Lupe relieved himself, involuntarily, through a catheter and a diaper, so the chance of bacteria getting into this huge open wound and causing a fatal infection was great.
Then something incredible happened: Lupe came out of the coma after four months. Jodi was with him late one night at the hospital and he just woke up all of a sudden. She ran out of the room in jubilation to tell the nurse, but the nurse didn’t believe her. The nurse ran in and saw Lupe awake, and became just as jubilant, yelling “he’s waking up!” right back at Jodi. It was a miracle. The doctors had no explanation and scratched their heads and consulted their clipboards. It was just a miracle.
Over the next few days he progressed, showing more and more signs of life. One night Jodi was sitting in the room with Lupe by herself and noticed a Catholic medal around his neck that hadn’t been there before. “I wonder who gave him that?” She asked aloud. “My dad,” Lupe answered. He had talked.
But even though Lupe had miraculously emerged from his coma it didn’t mean he was out of the woods yet. He was still recovering from an Aortic Aneurysm, an Anoxic Brain Injury, an L1 Incomplete Spinal Cord Injury, and Renal Failure. He couldn’t move his legs – he was partially paralyzed from the spinal cord injury. The doctors told him most likely he would never walk again. Since he was kept alive by a feeding tube, he now had to learn to eat on his own again, retraining all of his muscles. He also had been on artificial breathing apparatus in his trachea so he had to learn to breath again. Both of those processes took about nine months. But the bigger danger was still his bedsores, which had grown to an unbelievable size of 6 inches by 6 inches.
On January 20, 2008 Lupe left the hospital and was released to the home care of his big sister, Jodi. Her fight had just begun.
On a cold, rainy day in January an ambulance dropped him off. Then they left. In retrospect it’s insane that they would just release someone in that condition – the liability is crazy, the potential for something to go wrong, and they entrusted one person with no medical training to replace the care of about five nurses and medical staff. But I learned quickly that’s how it goes once your insurance runs out.
I was so scared. I didn’t see how this was possible for Jodi. Lupe was so fragile when she first got him home. He was in so much pain, and any little thing you did could hurt him, upset his wounds, or cause him crashing to the floor. He had absolutely no strength or coordination in his body, his muscles atrophied from four months in a coma, and was still paralyzed from about the waist down. How the hell was Jodi going to pick him up?
Lupe was given a wheelchair and a board, almost like a polished wooden skateboard deck, that we were supposed to use to transport him from bed to wheelchair to car seat. The first time we tried to use it right when he got home, we lost control of him and he crumpled to the floor in agony. Everyone was so frightened we were all crying or close to it. I’ve never seen a human being so vulnerable and weak – like a 200 lbs. premature baby. Finally we got him into the bed and settled. The first night was rough. Lupe had to be turned every 30 minutes to relieve the pressure on his bedsores, crucial for the daunting healing process. Of course he couldn’t even move an inch by himself, so we would have to hold one side of his bed sheets and pull them as hard as we could to safely shift his body into a new position. Jodi literally had to set her clock and wake up every 30 minutes during the nights to move him and check on him. How the hell is one person supposed to do that? She got it done without excuses or complaints – she saw it as a huge blessing that her brother was still alive, and his existence was the best gift she’d ever received. We took shifts: Jodi, her son T, and I, everyone chipping in as much as possible. It was exhausting but we got through it.
Keeping Lupe clean, trying to keep feces out of that bedsore so it wouldn’t get infected, was crucial to his survival. He also needed to be turned regularly, and often was overcome with pain and needed medications. He couldn’t talk above a whisper and wasn’t strong enough to use a phone or a bell or anything so we had a big problem – how was Lupe going to get our attention when he needed something, especially during the nights when everyone was trying to get half an hour of sleep. We thought and thought but couldn’t come up with a solution. Then it hit me – I ran out the door and told them I’d be back soon. I went to Home Depot and the Walgreens on the corner and came back to assemble my invention. I bought a wireless doorbell set, which sent a signal remotely from a little standard doorbell button to a bigger receiver that made the noise. I bought a cheap plastic watch and took the guts off, leaving the band and a flat base. With glue and electrical tape I affixed the doorbell button to the watch. We tried it out, the receiver in the upstairs bedroom and Lupe downstairs, and it worked perfectly. Lupe could now wear the button on his wrist like a watch, or attach it to the bars on his bed, and was strong enough to push the button. Well that doorbell went off every ten minutes! We laugh about it now, but we were like Pavlov’s dogs, jumping up out of bed, jarred into action by a doorbell, running down to help him without fully being awake, and half the time he hit it by accident! But it felt great that finally I could do something to help Jodi and Lupe.
Over the next months Jodi kept up this inhuman schedule. Lupe’s progress was slow, and not linear. He had many setbacks that were often life threatening. Over the course of his care he spent time in 4 different hospitals: St. Josephs, UC Davis, Kindred, and Mercy Folsom. He had 26 emergency room visits, most of which included admission into the Intensive Care Unit. He was on 21 different medications. He had appointments with Neurologists, Urologists, Psychiatrists, Vascular Surgeons, Cardiologists, Internal Medicine, Speech Therapists, Occupational Therapists, Physical Therapists, Ophthalmologists, and Nephrologists. He went to see each doctor monthly and to rehabilitation therapy three times a week. Only one kidney was functioning so he required renal dialysis 3 times per week for 6 months, and trachea weaning for 6 months. His bedsore healed very slowly, almost imperceptibly, Jodi measuring the opening of the sore with a metric ruler every week and recording the tiny progress. He still had to be turned every 30 to 60 minutes around the clock. His diapers needed to be changed a couple of times a day. His catheter had to be drained. He needed to be bathed with sponges in bed, and later wheeled into the bathroom. Just as daunting was the paperwork. Jodi had to wrestle with about 10 different agencies, state medical funds, hospitals, doctors, insurance companies, and medical supply organizations, all of which kept her on hold, contradicted each other, and had a miserable attitude about doing their job correctly. Each new doctor, each new ER visit required a briefing on his complete medical history. If they had waited for the paperwork to come from the last doctor he never would have received any care, so she took to carrying around a complete and organized set of his medical records. I remember her standing in so many white hallways under florescent lights briefing the doctors and nurses on his condition. They were amazed, many of them assuming that she was a nurse. A few times they even asked her to perform minor medical procedures on him before finding out she was just a caring sister, not a trained medical professional! I was proud.
To her testament she wouldn’t make excuses or let Lupe’s care lapse. She just took it all on herself and her efforts were Herculean. She was literally running almost twenty four hours a day between his care, cleaning up his bowel movements, washing him, making sure he got medications, turning him over, transporting him into the car to doctors appointments and rehabilitation, communicating with doctors, taking care of his finances, and dealing with petty bullshit fighting and excuses by his family. And oh, by the way, she still had to take care of two teenagers – T, who was an absolutely angel in helping his mom with Lupe, and Alyssa – a wonderful person herself, and work a real estate business in the worst market since the Great Depression to put food on the table. Have you ever heard of a mother, so overcome with emotion and adrenaline from seeing a loved one pinned beneath a burning car, that she lifts the car right off of them? Well Jodi lifted that car off of Lupe every day for two years, that is the only way I can describe her strength.
I was still working full time and in law school. I was so sleepy that I couldn’t even see straight, and I’m sure I didn’t retain much of what I read every morning. Even though the schedule was brutal I didn’t mind because at least what I was doing – to help Lupe and support Jodi as much as possible - was important. Maybe it was the most important thing I’ve ever done. Life was difficult but it had meaning, an ultimate purpose, and it made me appreciate all of the little things and blessing I took for granted. It wasn’t so bad because we had each other, and we got through the hard times and bad news and sleepless nights and enough tears to fill an ocean together.
One Saturday that spring we were at Jodi’s house and she had her family there for a rare visit. Instead of helping relieve her burden, the few times her family did visit or want to help, it turned into more work for her. They expected to be fed and they didn’t know most of the basics procedures and schedules for his care. Then she had to worry about them being late or flaking last minute and cleaning up after a house full of people after they left. I was sitting on the couch in the other room and took out my Law School books. I had fallen further behind that week and had about six hours of reading that day just to catch up. Kids were running around and screaming, babies crying, family members coming in and out, Lupe’s doorbell watch ringing, and Jodi was in the midst of it all trying to hold it together and be there for everyone. I opened an 800-page tome on Tort Law and just stared at it. I decided right then and there that I was going to quit law school, that it was impossible for me to have the time and focus to study AND help her out with her brother. I would have to choose one or the other, and I chose Jodi and Lupe. I don’t think I’ve ever told anyone that’s the reason I quit law school, but it’s a decision I have never once regretted. Oh – and there was homemade Carnitas cooking in the kitchen and I wanted a piece of that action instead of studying!
We made the best of it. Other than the ridiculous schedule and lack of sleep there were two things that were most arduous on a day-to-day basis: the first was getting him transported. We became experts in using that board – one end would be wedged under Lupe’s rump, the other end sitting firmly on the wheelchair. Slowly but surely we would pick him up under his arms and scoot him as gently as possible across the board until he was safely to his destination, and then we would remove it. Getting him up the board – from the lower car seat up to the wheelchair, was especially hard. At times Jodi had to do it herself on pure adrenaline, but soon we got the drill down, and could take the collapsible wheelchair out of the trunk, set it up, get him in it, putting his limp legs in the leg rests, unlock the brakes, and be ready to go in a few minutes, like a Nascar crew at a pit stop. As he got more strength Lupe could help shuffle himself with his arms.
The other danger was his catheter. That fucking catheter. At first Lupe had a catheter that extended from his penis called a Foley catheter, and it worked great. But the Foley wasn’t meant for permanent use so they performed a procedure where they inserted a Super Pubic Catheter – one that ran into the penis then up through his insides with the tube coming out of an incision in his stomach, draining into a plastic bag that was strapped to the side of his leg and easily concealed by his track suit pants. At least five times a day it had to be emptied. It turned into a nightmare, prompting Jodi to joke that the Super Pubic Catheter wasn’t that super. It would constantly cause bad urinary track infections because it’s the body’s natural reaction to reject a foreign object. Since he had renal failure Lupe only had one functioning kidney, making it hard for his body to flush everything properly. The catheter would get clogged or infected and all of the waste built up in the body and the toxins started making him dangerously ill. He would develop a fever and his skin would turn a pale yellow color. When this happened there was absolutely nothing Jodi could do except rush him to the Emergency Room. I swear it seemed like twice a week that damn thing would malfunction and she’d be in the ER, which always entailed a 6-10 hour odyssey of waiting, waiting, waiting some more, and then being frustrated as the doctors needed to be briefed and lackadaisically worked the problem. There was never any improvement or solutions – it would work for a while then he’d get an infection again and she would be back in the ER. Poor Lupe. How he endured this I have no idea. He didn’t talk much about how miserable he was, but some times he’d just break down and start crying uncontrollably. It broke my heart and what the hell can you say at a time like that? “It’s OK?” “Don’t worry, it will be fine?” I can’t even begin to fathom the pain and depression he went through. There were times I’m sure when he wished he hadn’t lived, and I often silently wondered if he was better off living in this condition. But then at the kitchen table someone would tell a funny story about him - when he was young and crazy and beat someone up, or the knucklehead things his brothers used to do - and Lupe would laugh so hard that he shook with joy and couldn’t stop, and for a brief moment it was fucking beautiful and all worth it.
The months went by and somehow Jodi and Lupe survived this all. Jodi’s son, T (a nickname) stepped up like crazy and was a huge help. He was only 17, and at a time when he should be out chasing girls and thinking of high school parties, he loyally stuck by his Uncle Lupe’s side, changed his diaper and catheter, and helped his mom, taking on more responsibility than most grown men I know. His character really shown through and I have mad respect for him.
I was converting my garage into a spare bedroom and bathroom at my house, and set it up so that the doors and bathroom were wide enough for Lupe’s wheelchair. I was getting concrete poured for an outdoor patio and bar and we set up a wheelchair ramp just for him. Jodi and Lupe would come over and we could set him up on the big, comfortable daybed in that back room watching TV and resting. Then Jodi could get a moment’s sleep knowing he was ok. I think it was cool for Lupe and Jodi to get out of the house and not feel so trapped by the situation. I would order Chinese food and he would roll his wheelchair right up to the table and we’d all hang out and talk about how bad the Raiders sucked that year.
This isn’t a perfect story, a fairytale where everyone lives happily ever after. Lupe will still be seriously disabled, partial paralyzed with some brain impairment and using a catheter for the rest of his life. There was a lot of resentment and anger with the family. Eventually Jodi and I stopped dating and there was a short period of estrangement before we settled into being very great friends. Considering the pressure and stress we were both under it’s amazing we lasted as long as we did. But in some ways I’m closer to her now than ever before, and maybe my purpose was to be there for her during Lupe’s recovery. Everyone had their low points and breakdowns, just like real life will throw at you sometimes, but I still feel I was part of something beautiful. I felt something more deeply than ever before: what it is to give and receive unconditional love, what it is to be a good human being, a divine purpose. We were alchemists, turning tears into tears of joy and fighting to survive another day. I was witness to a miracle
I was on the phone with Jodi the other day and we were chatting about all we had been through and how far Lupe’s progressed. It was nice. She was silent for a moment, and then sincerely thanked me for helping him. Tears welled up in my eyes, emotion choking my throat as I tried to speak. I thought about how I was a better human being for knowing Lupe, and for knowing her. I realized that life isn't about the good times, or the bad times, but the people who are in it with you along the way. I gathered my composure and let her in on what I had finally figured out: “Lupe’s helped me a lot more then I’ve helped him.”
“It’s been a long December and there’s reason to believe,
maybe this year will be better than the last.
I can’t remember all the times I tried to tell myself
To hold on to these moments as they passed.”
~Counting Crows, A Long December