Warning: this is a lengthy post (it’s more like a chapter of a book). The first half holds a lot of difficult details of Jeremy’s final weeks, but the end is where I tell of seeing God’s goodness in those dark days. This will be a much more intimate sharing of what life was like inside those hospital rooms (though still only a glance). For many, Jeremy’s death was a surprise with goodbyes that were made suddenly or not at all; but my parting from him began weeks before his death. I wasn’t always aware of it, but it was felt, nonetheless. And for those of you who have asked me if I ever cry…I do. The tears most often come when I’m writing. I guess this is how I grieve; it’s how I make sense of what there is to make sense of and how I let go of that which remains mystery. So, remembering those final weeks …. here it begins …
Day one, we move in. Jeremy unpacks a truckload (almost literally) of things to make that sterile room feel alive. We meet the doctors and nurses. He gets wheeled down to get his Hickman port placed in his chest and comes back in pain (already). Chemo begins that evening. I remember watching Jeremy try to settle himself in that room and it was clear to me that he couldn’t. This was clearly not where he wanted to be no matter how determined he was to walk that road. (I wish he were here now to talk about it, to unpack what was going on inside his heart and mind and to explain what strength it took for him to not make a mad dash out of that room. I wish he could speak of his reliance upon the God that he had grown so completely dependent upon, a God who had proven Himself trustworthy, a God whose face he knew he would one day behold.)
That first week Jeremy received an onslaught of chemo and radiation in preparation for the transplant. Besides unending restlessness for him, I recall that week going better than we had expected. I remember going down with Jeremy for each radiation treatment; he had such a good attitude. But I also remember standing there, waiting for him to come out of the treatment room, thinking how inhumane it all felt (the radiation in particular), the fact that his entire body was being burned out at it’s core. And I felt so offended. This wasn’t just Jeremy’s body. This was my body, too. This was my husband. This was the one whose hands I held, whose mind I gleaned from, whose love was mine. And it was difficult to stand back and act like this was all okay. But Jeremy was a champ. Though I know he often struggled with feeling weak for always being the “sick one”…he was stronger (inside) than most healthy men could ever take pride in. And the core of his heart could never be burned out of him.
About a week after the actual transplant his first fever showed up, which was really the beginning of it all going wrong. Fevers were to be expected; everyone in his condition is going to contract something during those weeks of having no immune system. The evening before the fever showed up the boys and I shared a wonderful time with Jeremy in his room–we all got comfy, watched a movie, played games. Despite how wrong it felt to be separated as a family every night and how difficult it was to explain to the boys what was going on, I remember thinking that evening, we can do this.
Until Jeremy began to hallucinate. I had expected him to be nauseous and tired and achy, with a mouth full of sores, but this caught me off-guard. Aside from the typical side effects I had still expected he would remain the Jeremy I’d always known. And when you start to lose grasp of what’s going on in another person’s mind, it’s really difficult (even frightening, sometimes). Doctors originally pinned the hallucinations on days of high fevers. But the fevers came and went while this other world he was living in remained. After a week and a half or so, it finally began to wear on me. He kept seeing people I couldn’t see. He would sleep and wake up having had a continuous dream of things going on at the U of M; visions of Christ being made known within the facility’s walls. He thought some of the doctors and nurses were involved so he’d ask them about it; they’d look at him dumbfounded. He’d say to them, “But you were there–you know what I’m talking about”. And they’d have no response. He also heard music all the time–worship music. He’d start singing and say, “Can’t you hear that, Jen?”, songs that I had never heard before in my life. He’d even search the room trying to find the source of it. And I didn’t know what to do. I didn’t know what to say to him. I knew there was no harm in those experiences for him (in fact, one doctor said they find that patients with an artist-mentality tend to hallucinate more–something to do with that creativity stuff), but interacting with him day after day with conversations like this became very difficult. The doctors assured me that it was normal–he was on an enormous amount of medications and his body had been completely messed with at the core. They said it would go away, but at one point I just didn’t know if I believed them. And as humbling as this is to say now, I was afraid of bringing home a husband who’s bone marrow was healed but who’s mind had changed. I asked to meet with his doctors again, outside of Jeremy’s room, for them to tell me one more time that this would not be permanent. And they assured me it wouldn’t be. Okay, I can do this.
But there is one experience amidst that week that stands out among the rest. It occurred just days before Jeremy ended up on the ventilator. They were doing a procedure in his room to test the fluid in his lungs. I stepped out and came back in when it was over. I walked into the otherwise cleared out room and over to Jeremy, who was flat on his back and laying as still as ever. His eyes were closed but I saw tears running down the sides of his temples and I asked him if he was okay (assuming that the tears evidenced pain). But he said, “I can’t move, Jen. It’s so beautiful. I saw the face of God. It’s just so beautiful…” Again, I didn’t know what to say to him. I couldn’t join him in what he saw. I didn’t know if it was real, or not real, or a combination of both. But he never forgot it. One evening a few days later, with a mind that had mostly cleared, he was sitting with a group of close friends. He was asked about that experience and he couldn’t speak of it. He would try but he would just get choked up. He wanted to tell. But he couldn’t.
In hindsight, there are a few thoughts that I have about those weeks of hallucinations. First of all, the hallucinations always brought him comfort. They may have frustrated me and the nurses, but never once did they frustrate or frighten him. So even if they were medically induced–which is likely, to a degree–in some ways I see it as a grace of God for Jeremy. Anything that brought his body and mind comfort those days was worth it. And if seeing people and dreaming dreams and hearing music that we couldn’t was a means of comfort, then I thank God (and it doesn’t frighten me so much). But that “seeing God’s face” moment holds even more mystery. Jeremy would wake from his dreams speaking of his heart being changed. And I wonder…was God not involved in those in some ways? Was Jeremy being prepared for that “eternal weight of glory”? I don’t know. But maybe when it seemed like he was interacting less with the world, he was actually interacting with more of it.
Just days after his mind had mostly cleared, his breathing got worse and he ended up in ICU on a ventilator for six days. Then he was off for three. And that third day off Jeremy and I shared in our last evening together–which holds one of my fondest memories of our time there, as well as one of my worst.
That evening together took place on Wednesday, May 23rd (2012). He had pulled out his tubes and been off the ventilator for a couple of days (which brought on another case of delirium for him, not knowing where he was or exactly what was happening). After spending a few more days in ICU, they felt confident he could move back to the original transplant wing of the hospital. So the transition was made late one evening. And when I arrived late the following afternoon, Jeremy was back to the Jeremy I knew. He was still very sick, very weak. But I could look into his eyes and see the man I had been looking at for a decade. His mind was there. His heart was there. He was fully present with me. I cannot begin to tell you what a joy that was. We were alone that evening. We shared a meal of sorts together. He made room for me in his bed and we watched a few episodes of Downton Abbey (which we had just begun watching prior to his admission). Though the show itself isn’t that important, there was a significant moment we shared while we watched. There was a point at which I lost the plot; I was confused about who was who and what was going on. Jeremy paused the show and proceeded to fill me in. And I thought, if he can retain what we’re watching and knows more than I about what is going on, then he’s truly back with me. This is my Jeremy. I think I told him as much. I remember looking into his brilliant blue eyes, seeing that he saw me and was with me. And that was the last time we ever shared in that together, a mutual gaze which held volumes of unspoken words and an I love you that shattered to pieces the white walls around us. If nothing else, I’m grateful we had a reprieve from the ICU just so we could share in that together, giving me one more solid memory of life with him.
Unfortunately, as the evening went on Jeremy grew worse. He was tired; he wanted to go to sleep. So we got him ready and situated, we dimmed the lights, we asked the nurse if he could be disrupted as little as possible so as to somehow allow for some much needed rest. But an uninterrupted night in a hospital isn’t really a possibility (especially in his case), and it never came to be. He began to grow really frustrated by his inability to settle in. He asked me to sing over him a song that I sung to the boys when they were little (which I thought at the time to be an unusual request). But still, he couldn’t rest. It’s obvious to me now that we had a few things working against us that evening. Jeremy was trying to do too much, the nurse wasn’t doing nearly enough and I was stuck in the middle trying to keep him calm and comfortable. But I also wonder if the main issue that night was that he couldn’t breathe well enough (and none of us could see it). I think he had spent the whole day consciously thinking about his breathing (so as to ensure it’s sufficiency). But when he grew tired and needed to sleep, what ought to have been an automatic function wasn’t adequate. (I don’t know any of this for sure, but I think it’s possible.) I do know it ended up being the worst night I spent with him. I don’t think I left until 1:00 a.m. and the whole situation was incredibly stressful. I was so tired; I had worked hard for three hours to try to manage Jeremy’s needs while feeling pressure to appease the nurse as well. I left him for the first time ever not sure that I was leaving him in good hands. (Now, nothing done that evening would have changed how the story ended, but I do think a lot more could have been done to assess the situation. If so, we could have helped Jeremy, and ourselves, understand what was going wrong.) I remember being so torn in my decision to leave him that night, but I was literally shutting down. I needed some sleep. I couldn’t handle the stress anymore. And though I knew Jeremy wanted me to stay, I also knew he remembered the commitment we made to each other that I would take care of myself as well. He saw me feeling torn and at one point he said, “Just go, Jen, don’t delay the inevitable”. Those were hard words because I wanted to stay but I needed to go. And it hurt both of us, I think. So I left. I missed a call from Jeremy on my way home and on the voicemail he said, “When you left, all hell broke loose here”. So, of course, I debated going back but when I arrived home I found Jo Isaac sick with a fever. And I felt even more torn. But I stayed home. I intentionally woke up and showered early the next morning knowing that I would be receiving a call from the doctors when their shift began at 7 a.m. Sure enough, I did, and I headed back in.
When I arrived Jeremy was breathing laboriously. It’s an awful sight to see, and this was the second time I’d seen it. The clarity of his mind was starting to dim again (from lack of oxygen). I sat by his bedside trying to calm him, encouraging him to take deep, slow, consistent breaths. The possibility of him going back on the ventilator was becoming greater but the decision was made to try a BIPAP mask first. (A second time on the ventilator adds to the likelihood that they’d never get him off of it. The weight of that reality made the air heavier for all of us.) So the respiratory therapist came in, who happened to have terrible bedside manners. That said, Jeremy wasn’t being a very cooperative patient, but the combination of their interactions made for stress like I’ve never experienced. The mask can be very uncomfortable and Jeremy, with his added confusion, would have nothing of it. They’d put it on, telling him he had to keep it on; he’d pull it off. Repeatedly. And I stood there–broken by both his need and his unwillingness–knowing that this mask needed to stay on. Then came to be what was one of the most difficult interactions of my life with Jeremy. The nurses were stressed by his condition, all of us well aware of how important it was to keep him off the ventilator. So for five minutes that morning, I found myself forcefully restraining Jeremy’s hands on the bedside. I, the calm, peaceful, respectful and dignified wife, tightly held down his hands while he fought against me. I think it was the worst experience I’ve had (in relation to another person) in my whole life. It’s one thing to restrain your child; it’s a completely different thing with your husband. I remember the way he looked me, appalled that I would do such a thing. But I knew (and I don’t know if he did) that there was no other way. Amidst his labored breathing he said, “Just 10 minutes…I just want it off for 10 minutes”. And I remember saying to him, “But Jeremy, you don’t have 10 minutes”.
In retrospect, I don’t know. Maybe we could have given him 10 minutes. Maybe he just needed to acclimate. Maybe he had something he wanted to say. But it was apparent that Jeremy was still very confused and in that moment, amidst the pressures of the nurses around me and the heart cries of Jeremy, I made the best decision I could. I had thought, if he’s gonna live, I need to keep his hands from pulling this mask off until the nurses can calm themselves down and get this situation under control. But I also know this: a wife should never be asked to restrain her sick husband. Never. I cringe when I remember the position I was placed in; they should never have asked me. Those five minutes broke the insides of me in ways I’d never known. As soon as I could, I escaped that room because I couldn’t take it any longer. I couldn’t manage the stress that the nurses were feeling, couldn’t watch Jeremy trying to breathe anymore, couldn’t watch him fight the mask, couldn’t handle him fighting me. I grieved that I had seen Jeremy look me in the eyes the way he did; it was nothing like the gaze we’d shared 18 hours before. I wanted to forget that those moments had ever happened but it was essentially the last time that I would interact with him. As was feared, the mask wasn’t a lasting solution, so he was transitioned to the ICU by noon and back on the ventilator by 10 p.m.
Some of you may remember that my dad died unexpectedly six months before Jeremy’s transplant; his heart had stopped while he was driving, which led to a car wreck. Though my eyes never saw the scene of the accident my mind would continuously try to imagine it for weeks after his death. I remember telling Jeremy of my struggles, of laying in bed trying to picture what the last moments of my dad’s life were like. Jeremy had told me, “Jen, don’t dwell on those thoughts. They are not of God. They are not light-bearing or healing. Don’t make a home for them in your mind.” I cannot tell you how much freedom that brought to my heart back then. And I can still apply his words to these difficult memories surrounding Jeremy’s own death. Those weeks in the hospital held dark moments, they were not good … don’t dwell on them, Jen. There are better things to think of, brighter things, more lovely things (like those brilliant blue eyes of his that spoke love). So, I remember the gifts.
While some of those dark moments separated me from Jeremy when all I wanted was to be with him, those same experiences also grounded our love for one another and made visible to me what we always knew to be true: that God was far greater for each of us than we could ever be for one another. In the most difficult of circumstances–when we didn’t have grace for each other–God supplied plenty for the both of us. We saw that happen time and time again. Our love had strong, established roots, sourced by a Love that is stronger than death. Life was full and our love was deep, which is why it all hurts so badly. So, I will remember the gifts.
I’ve had an amazing history with Jeremy, one that is not filled with regrets. I know this is not always the case in this world we live in … when people die before they’ve taken the opportunity to mend brokenness with one another, or had the chance to make known their wishes, or having left behind a life filled with bad decisions. Our ten years of marriage was a haven for both of us, not a place of great hurt. Was there ground in our relationship that still needed to be tread? Absolutely. There were horizons we had just beheld, with visions of what could be if we were given the time. But we weren’t given the time. And this isn’t regret–there wasn’t precious time we’d forfeited. We made the most of our ten years and not having regrets is a grace and a gift that I receive with deep gratitude to our Savior. What about those difficult moments with Jeremy at the hospital–do I regret holding him down? Do I regret surrendering to my need for sleep on a night when Jeremy had no shelter to crawl into? Do I regret feeling frustrated and frightened when his mind found solace in visions and dreams that I couldn’t see? I don’t think so. I don’t know that if I were to be placed in those same situations again with the same pressures, that I would have done anything different. This is life. This is being real. And that was love. It was crazy hard and the best thing ever. So, I remember all the gifts.
There is nothing so difficult as watching the one you love most in this world suffer. Here I am, a year later, and it still hurts to remember. My heart holds the ruins of those dark, final weeks. But I wonder if, when it feels like God is holding our hands down, He’s telling us, “I’m doing this so that you will live. Stop fighting me.” I couldn’t save Jeremy’s life. But his salvation wasn’t in me. While I was losing him those weeks, he was gaining eternity. And that’s more than a memory. It’s reality for him now. As I see God’s work throughout the history of Jeremy’s life, I trust God will also work out His salvation in me and the boys, until we too, shall see the face of God. I have faith that whatever it is we need to prepare us for that eternal weight of glory will be supplied, per God’s good intention and by His love, even when it hurts.