The months of January and February were dense with over-understanding, like being stuck in a block of someone else’s condensed air instead of your own. No matter how I tried to move the friction of a million particles would rub against the skin giving a sensation of being trapped on a carousel while stuck in “bullet time” (from the movie The Matrix). It wasn’t bad. It wasn’t good. It was just pressure, added layers of information between feeling of the skin and feeling of the heart. Every movement had to be precise and purposeful or else the tremendous effort to move in a particular manner had been wasted. There was less drinking, less detraction for him but less breathing for me. Shit was getting real. Many things started to change quickly and it all started with a couch.
The nurse who saw him was a lesbian and her partner was getting rid of an old couch and matching chair from one of their spare rooms. It was a simple couch, light, itchy fabric, ‘very lesbiany’ I thought. It was a pleasant grey/green mix that matched his slowly fading eyes, so it was most apropos. Because he had nothing in his apartment on South Lamar but a Hospice-provided hospital bed and table, the couple asked if Jeb wanted to take the furniture. He did. The couch and chair were at his apartment for a week and he decided he would rather have the set in my apartment. So a week after initial delivery (and bless them for this) the lesbians came back and moved the couch again to my place. After three months, he finally signed Odyssey’s release of medical records form so that the nurses can talk to me openly about Jeb’s condition. His normal routine was to take the Wednesday meetings with the nurse at his apartment. With the new furniture it seemed easier to have it relocated to my apartment. Not only was this now going to happen in my living room, but also he wanted me there for the nurse’s visits. I wasn’t sure how to handle that but the nurse assured me it is actually preferable to have a “caregiver” present with the “patient.”
I froze with the word “caregiver.” In my own head I would randomly refer to myself as a “caregiver” but never aloud because in my mind I wasn’t an actual caregiver, I was just the guy who drove his best friend home from the bar. I did other stuff as well, but I never put it in such intimate terms – if that was even an intimate term. It sounded sterile in my head, humorous even but when she used the word it sounded more like a partnership, like a commitment. Maybe it’s a ‘guy’ thing, maybe I just really wanted to go back to eating food directly from the refrigerator in my underwear. Who knows, but her presentation of the word “caregiver” gave gravity of responsibility causing a congealing lump in my throat. Then it gets worse.
A nurse checking out a patient goes through a series of knowns such as vitals (blood pressure, temperature, lungs, etc.). Then depending on the patient they also check mobility (standing, sitting, touch this, touch that). There is an inspection of the Staph infection (latex gloves!). But next is inspecting their entire body for any signs of… whatever – anything. Then the psychological evaluation of the “patient.” Finally is the psychological evaluation of the “caregiver.” This was going to happen every week.
When it was all over, I almost felt emotionally violated. I understood why the nurse presented the word “caregiver” with such familiarity – it was, for the sake of repetition, intimate. He was use to this routine, he had been going through it since November. This was my first time, and like all first times it was a bloody mess. It’s funny now to think that I didn’t even know how to look at Jeb after all that. We were both stripped searched and prodded (me mentally, he physically), together, at the same time. So much of our lives were spent doing the opposite of this. I could use the word “avoidance” all over this story, but it wasn’t avoidance as it was evasive restraint. We didn’t talk about many things because there simply wasn’t a need to talk about them. Now we were talking about them, visualizing them, demonstrating them for a nurse practitioner, and then having a therapy session about them, together. This was intimacy at its core, and for two people who’d never seen each other naked it was a leapfrog boundary to a place neither of us had experienced. But there we were, and there it was. And here it comes again… every week on Wednesdays.
(I would eventually refer to this as “Wednesdays with Morrie.”)
In the late part of the month before going into February there was a dispute with his apartment managers. Apparently “dying” isn’t suitable cause for breaking a lease, neither was being in Hospice care. He argued for three days to no avail – he would have to pay for breaking the contract. “Send me the bill,” he finally said and gave them my address, walking out in a huff. The two ladies at the office knew there wasn’t going to be any payment, they were just following the rigid draconian legalities of the management company. Looking at him one could tell he was dying but on paper anyone could use that excuse. I’m thinking that eventually they verified through the nurse that his story was truthful because I never heard from the apartment company.
Jeb technically lived in my apartment for exactly five weeks – from the beginning of February to the second week of March. I fully (anyone knowing him would have) expected him to want some time alone in his place, a quiet moment of reflection, say a final farewell to his freedom, a moment of solidarity perhaps. He did not. The move was more farce than anything. There physically was no “move” to take place – all his stuff was divided between the lake house and my apartment and Hospice came to retrieve the practically unused hospital bed and table. The rest of the job was mental, and that had already taken place three months prior. But with the breaking of his lease we were officially living together, again. This time he was the one on the good drugs.
He knew he was in safe hands, he trusted me, he was comfortable with my help. He trusted Brian and Ed where he would eventually end up. His loss of freedom didn’t concern him by that point. There were a few things flying around his mind, especially since trips to the bar were getting fewer and fewer. He was spending less time in the city, and more time on the couch. He was drinking less, thinking more, pondering, opium-induced philosophizing as the prescription dosages increased. With that came a question out of nowhere. “What does the bible say about life after death?”
Yes, he asked that question. It was confusing to me because I thought he would have remembered something from his own religious background (he met his first girlfriend in high school at bible camp, for fuck’s sake). With my history I was well versed in scripture, but there was no way I could present the information with any empathy or heart. In fact, it was everything in my power not to slap him hard enough so his head popped off and I could avoid the question while he found out definitively right then and there for himself. Jeb is a decade knowledgeable with my Jehovah’s Witnesses past, investigating the bible’s conception and history after my excommunication, and my current strict atheistic views. I paused to look him over just to make sure he is not trying to get some sort of reaction out of me, a rise. The heart-wrenching part is he wasn’t. He sincerely wanted to know.
“Do you really want to talk about this?”
“Yeah. I felt one way most of my life, I just want to know what other people think. How do they handle this shit?”
I did not (nor will I ever) have a bible in the house. I had to collect my thoughts before speaking. In very soft, general terms I explained basic Christian philosophy of imperfection and redemption, how we were once close with God but fell away… and the ultimate goal is to get back to God. When death is upon us, our hope is that our path in life – the choices we made and the how we lived – would then put us in favor with God once more, allowing our souls, consciousness, and being to be with Him in whatever it is He has planned in heaven, whatever that ‘heaven’ might be.
“Odyssey has a chaplain. I’m going to ask him.”
I almost smacked him upside his head anyway. But I laughed at the dismissal. I didn’t take it personally, I didn’t believe what I was saying either, so no matter how eloquently it was worded I probably presented it as drudge rather than hope reinforced with strength and honor. I asked if he wanted to go through Buddhism or any other Eastern religions, spirituality of the Native Americans perhaps. He did not. He was only interested in Christianity. A few days went by and he walks into the apartment with a free small bible in hand. “Did you talk to the chaplain?”
“Yeah. He basically said the same shit you did.” And he threw the bible into an unknown pile.
He was looking for the magic phrase to make everything better that doesn’t actually exist with any hard definition. The closer one goes to death, the less religion makes sense. I saw this in my father as well, and avid bible-thumper. Religion is sometimes difficult to maintain when real overcomes want. I took him by the shoulders and said from the deepest part of my heart, “Look, no one knows for a certainty how this is going to go. We only know that it’s going to happen. Biology works one way, the spirit inside us works another. In the end, you are going to have a lot more answers than any of us still stuck here.”
“Yeah. I know.” He rested his forehead on my shoulder, something he has done many times, but at that moment he was uncharacteristically weighted. “I don’t want to talk about this anymore.” Love from god is a perception, not unlike talking with someone you desire at a bar, walking away and telling your friends, “They so want me.” It’s very real in the person’s mind, it’s just not real universally, it’s not real in the minds of everyone else. The abstract hypothetical of distant cosmic love coming from a god isn’t the same as the observable love of your friends doing everything in their power to keep a smile on your face and fuel in the heart. When the body is failing in very tangible terms, you need tangible, or the equivalent of tangible love. With that, I reached around his bony body and hugged him for as long as he needed. And that was the conclusion of our End of Life heart to heart.
The binge and purging eventually stopped. Anything that was to be kept was already out at Brian and Ed’s house. It quickly felt that Austin was becoming more depressing for him than joyous. One of our saving factors (“spirituality” some might say) is to see the powerful benefits and forward motion in all matters of life, the good and the bad, the positive and the negative. It is not sunlight 24-hours a day… you have to be willing to walk in both the light and the dark. Sometimes what is perceived as “evil” can be of benefit just like sometimes the “good” can be harmful. If you believe as Saint Bernard of Clairvaux that the ‘road to hell is paved with good intentions,’ you could also assume that the road to heaven is paved with at least some adverse motivation. Without the extremities of black and white, we saw the gradient color that allows an overlapping of terminology where things are not so easily categorized, which seems contradictory for categorical people. What is often missed is part of the reason why we categorize life so specifically is so we can freely enjoy those aspects which have no category.
There is no way any human could be all good or all evil, people like us just happened to be a comfortable with a mixture of both, but always with an object of moving forward. Being of only one side leads to stagnation, and stagnation leads to laziness, complacency. Extremities lead to dangerous levels of dishonesty. By March the city of Austin, life, living, dying had become all evil, all dark, overwhelmingly lopsided, all of one and nothing of the other. He had whittled his life down to a backpack and a bag where his medication was kept. He had possession of my iPod and I filled it with every song he wanted. Disappearing into the headphones was the only safe place to be, the only ‘good’ of the situation, and even that was failing him when all of the city he loved was right outside the window crying for him to go play.
When I saw that my time, our time, was over I got a job… a real job at an office. I fortunately found an engineering company that was hiring on the same road I lived off of, but closer to downtown. Jeb still had the key to my apartment, he would always be allowed to come and go as he pleased no matter what. If he ever came into town he had a place to crash or rest before making the hour journey back to his new home. I didn’t think that was going to happen often (or at all) but I kept the air mattress inflated… just in case. He was sliding fast and I didn’t want to watch it. I didn’t want to pay attention. But I did look it square in the eye and said to whatever it was “do what you need to do.” And that was it.
In middle of March 2008 Brian came and gathered whatever was left of Jeb’s life and they headed out for the final leg of his journey.
James P. Perez © 2014