You weren't willing to give or willing to see
And you watched me crumble as I ran
To pick up the pieces of you and of me
As they blew off the wreck that flew down the tracks
Stepping on the accelerator to take us onto the highway, my heart started to race and I tried to catch my breath. I may as well have had my foot pushing down on a pedal labelled “panic.” It was January 2013, and I was driving my husband to the nearest metropolis for step one in a series of tests and meetings required for him to undergo another pancreas transplant. Crashing the car seemed entirely possible so, in an attempt to calm myself down, I started to breathe like they tell you when you're in labour. My husband was a bit concerned but certainly not as much as he should have been. All I wanted to do was get out of that car, shut down the mental image of the fiery ball of wreckage and have my feet touch the ground. Later I thought to myself—that must be what it feels like to have a panic attack. At the time I didn't really understand why, but there was a sickening momentum like I was being held hostage on a runaway train. Ever since my husband, Leigh, decided he wanted to go ahead with the transplant, uneasiness took hold of me and wouldn't let go. I tried to ignore the dread because I couldn't grasp anything with confidence and say, “Hey, it's just not a good idea.” Leigh had good reason to want the transplant. He was so determined to push ahead, not even a herd of wild horses could hold him back. His driver's license had been taken away from him after his last diabetic seizure, and, in his mind's eye, the transplant was the ticket to regaining his freedom.
Leigh had undergone a double kidney-pancreas transplant in 2009, and the way I felt back then was completely different. Sure, I had fear, but it felt like we were all in it together—my husband, myself and our young daughter—waiting for a miracle. Leigh was only in his forties when he lost all kidney function. He had to have a tube implanted into his abdomen so he could be hooked up to a dialysis machine for ten hours a day. We wanted him to have a working kidney, to be free from the dialysis machine and everything that went with it. We wanted him to be able to go on bike rides with us and not feel weak or faint. We wanted him to have a working pancreas so he could leave behind all the worries that came with the diabetes he had had since childhood. That was the collective want. The part that I wanted for myself was to be released from the constant worry over his diabetic seizures. I always had to be “on”—like my stress hormones were in a permanent standby position. Leigh's seizures could happen any time: in the middle of the night, out in public, at work or even while driving. In fact, at times I found myself resentful because Leigh didn't appear to worry about it that much. When one of them hit, he was completely out of it and I was pretty much always the one who had to take care of it. On one hand, you could admire how he never let his diabetes stop him from trying to live a normal life. On the other hand, I used the catch phrase “denial ain't just a river in Egypt” to describe my husband's strategy for dealing with the parts of his life he didn't want to deal with.
Leigh became a type I diabetic at the age of twelve, and he required multiple injections of insulin every day. Despite what many people may think, insulin is not a cure and not all diabetes can be well managed. Leigh had a particularly severe, difficult-to-control form of the disease called brittle diabetes. He had experienced countless seizures and even a coma before I ever knew him. My life prior to Leigh was full of rejection and abuse, so the fact that he seemed to need me was like the drug I didn't know I craved. As my husband's problems and needs became the main focus of our lives, these things took over my identity. My worth had become completely wrapped up in looking after him, looking after our daughter and keeping our family afloat financially.
My husband had a good heart and that's why I fell in love with him; he had a genuine warmth and an easy going way about him that people were drawn to. He would often say of himself that he loves everybody. However admirable these qualities might be, he had a lack of discernment regarding people and was easily taken advantage of. He would back away from conflict, especially in those instances where he should have taken a stand. This part of his disposition became a major problem for me, and, as a result, our marriage started to suffer. Dialysis was very hard on him; the treatments were time consuming and restricting. They tired him out, and he was susceptible to infections. At the same time, he was trying to manage his diabetes and keep working in a physical job. He would never say it but I knew he was hurting because his family wasn't there for him; they tended to minimize what was happening and the prevailing attitude was that dialysis wasn't a big deal.
The circumstances surrounding their attitude was complicated and I certainly didn't have all of it figured out back then. There had been a coldness filling in the space between us and Leigh's family in the years leading up to Leigh's kidney failure. And, along with everything we were facing, the hostility that was coming our way was as puzzling as it was unbearable.
We had just come back from a vacation, and I was feeling positive, even though we were adjusting to the reality that things were going to be rough with Leigh going on dialysis soon. It was an active trip; we were taking our daughter, Brienne, to meet her friend who was camping in Northern Ontario. On the way, we were canoeing in Algonquin Park—the kind of trip Leigh wouldn't be able to take again for the foreseeable future.
Something happened when we came back home that, on the surface, seemed trivial. Even though there were many things I wasn't yet aware of, I knew immediately after it happened that it was indicative of the silent storm that had been brewing, and it was pivotal.
Leigh's father Willie called. He demanded to know when Leigh could help him move a chimney on an old house he had just bought. Over the years, I had become unsettled by my father-in-law's behaviour and avoided picking up his calls. For a long time, I accepted the general consensus that he was eccentric but, gradually, intuition told me that something wasn't quite right with him. He was completely oblivious and unconcerned with his son's health challenges and how they affected him personally or how they affected his ability to make a living and help support us. These, of course, became my burdens, which seemed to concern Willie even less.
Normally, I would have let his call go to voice mail, but this time I asked Brienne to pick it up. Leigh was asleep; he was working on an on-call basis with a new employer and had to be ready to take a shift at any time. Even though our daughter told him that his son was asleep, he insisted on talking to me instead and proceeded to grill me on when Leigh would be available to help him. Offering to have Leigh call him back when he woke up was not enough. He was like a dog with a bone; he wouldn't let it go. The nitty-gritty was that he wanted a commitment that Leigh was going to be able to do what he wanted, when he wanted it done. My voice was shaking with anger. When he objected to my tone, I blurted out, “You push and you push and you push, that's why.” I said good-bye and hung up.
Being defiant, however minor, to a man who was used to having his own way was completely out of character for me. I certainly wasn't raised to have any confidence in myself. Little did I know that the road ahead would force me to stand my ground and push back over and over again.
The dominoes started to fall as Leigh's mother, Hattie, called about five minutes later with words full of vitriol. She said I was rude and had always been rude to them. Being in shock through the entire scolding left my memory numbed to all that was said. It wasn't fair and it wasn't true, but there was a part of me—the little girl who had been shamed by her mother—that believed it nonetheless.
When I met Leigh, I started to spend a lot of time with his family because they appeared to be like the normal, loving family I never had. Years of my life were invested in trying to fit in to this family but Hattie's verbal attack seemed to be proof that it was all for nothing. How could she not see that all I was doing was protecting her son, my husband?
After that, I told Leigh that I was done trying to please his family, offering to divorce him if that would make things easier. He didn't want that, but in pressing him to stand up for himself or for me, he would sidestep the issue. Leigh's default position was to have his head firmly buried in the sand but it would have been hard to miss that I was more than a little upset. A week or two passed before he made an attempt to discuss the matter with his father. Then, when he did, I was disappointed with how eager he was to accept Willie's excuse. Willie took no responsibility and attributed the verbal attack on me to all the prescription drugs that his wife was taking. At the time I was too distraught to make a lot of sense of what had happened.
On another occasion, when Leigh tried to meet with both of his parents to discuss what happened with me, they didn't show up. Even though I was angry and hurt, I realized that Leigh's mother was in a difficult position. She depended on Willie, such as he was. When I was dating Leigh, we'd shared conversations in which she admitted that there had been serious trouble in her marriage—serious enough for her to want to leave. She stayed because she was afraid of him and didn't know how she would support herself and three young children.
So, for the years Leigh was on dialysis there was little to no communication between me and Leigh's family. Leigh missed having them in his life, and he wanted to carry on like nothing ever happened. Part of me wanted to go along, for his sake and for my daughter's sake, but I just couldn't bring myself to do it—to walk into their lives again and pretend it was okay. My feelings didn't appear to matter so I did my best to accept that my husband and daughter would go see his family at Christmas and on other occasions. I wasn't part of it anymore, and they seemed content with that. Willie was lining up the family against me—using my hurt and my silence as leverage to do so. I heard that he was telling Leigh and his brother, Peter, that I was crazy like my mentally ill mother.
His strategy for getting to me was working because the atmosphere of antipathy was inescapable, even when I wanted to turn to my own husband for understanding. But then I discovered that there was a psychological term for what he was doing; he was gas lighting me. There was more to it than a garden-variety cruelty. It was a manipulation designed to isolate me, to question my perceptions and even my own sanity. Despite the relief in finally realizing that this was a lie, it felt like I was being buried alive with no choice but to be silent because no one else could see it.
My husband was trying to work as much as he could and hooking himself up to the dialysis machine every night like a sci-fi cyborg. For my part, I was determined to help him and keep our little family going. The core problems between Leigh and me were still there, but his need for my support brought out more humility and more appreciation.
I believed that Leigh loved me but, at the same time, he seemed unable to show it in any way that mattered to me. Maybe I was awakening to a realization that I had accepted too little for too long. If I brought up how much I had done for him, he would acknowledge it but it didn't change how he behaved. Over time his words meant less and less because it became painfully obvious that I was not a priority. For instance, there was the time that Leigh was supposed to meet me at the auto repair shop, so I didn't have to wait while my car was being looked after. But he forgot because his father had called him for something, so he dropped everything to go see him. Of course, I was angry. But instead of acknowledging the validity of why I was angry, the next day when I was at work, Leigh called me and started talking about suicide.
He was saying how he couldn't handle being on dialysis anymore and even though part of me knew this had something to do with our argument, I couldn't take a chance that he wasn't bluffing. When Leigh went on kidney dialysis, we were given access to a social worker, a dietician and other healthcare professionals to help in the transition. I begged someone to cover for me at work while I arranged for the social worker to see us right away. Leigh talked about the dialysis being too difficult. Sitting there, embarrassed, I almost didn't say anything but then I told the social worker about what happened and why I was angry. After he heard both our stories, I was shocked that he reprimanded Leigh for using the threat to punish me for being angry. I wasn't used to anyone seeing or caring about my perspective.
Leigh stubbornly kept the blinders on when it came to his father, which meant he couldn't acknowledge my suffering. Therefore, my bitterness grew along with the distance between us. Whenever I did try to express myself to my husband, he took the path of least resistance: he would blame me. By nature, Leigh was easygoing, but he was reaching a point where he couldn't deny his emotions. His anger was becoming more evident, especially after he lost his driver's license. It's no exaggeration to say that, at times, I was afraid of him.
He claimed to want to fix things between us so I suggested counselling. However, I didn't go into it with high expectations because I knew Leigh wasn't hearing me. I didn't trust him anymore and I didn't know how to fix that by myself. There were too many times that he didn't put me first, that he wasn't there for me, that he wouldn't defend me. These were the things I wanted to discuss with the counsellor but he deflected and tried to make it about something else. When I brought up his family and how he put them first, he said that was because he had known them longer. He didn't even realize that he had dug the hole even deeper, strengthening my case.
Whenever I thought about ending the relationship, I always came back to the idea that I needed to be there in case something happened. I knew, in going through the kidney failure and dialysis experience with him, that there wouldn't be anyone else to give him the help he needed if anything went wrong. It always came back to that—that he needed me. How had it come to this? Why should I be so compelled to act as his saviour? It wasn't just him, though. What about our daughter? What about the finances? He wouldn't be able to manage living on his own; he could have a seizure alone somewhere and end up dead. I wanted out, but I couldn't live with the idea of abandoning him. I didn't know who I was, having invested almost twenty years into this marriage. Had I been wrong in trying to do the right thing by sticking it out in a relationship that I am certain many women would have bailed on a long time ago? There was no balance. I had been doing all the giving and I didn't have anything left. This was my crisis point.
As far back as I can remember, I sensed that there was more to the world than could be seen. I believed in God and it bothered me that Leigh didn't. I admit that I was ignorant about what that meant for me or my life, and I can't say that I knew anything about the experience of a personal relationship with God. I kept trying my best to have a normal life, be a good person, and live my life striving after what I wanted—the way the rest of the world does. Why am I saying this? Because, it was leading up to this transplant that I finally hit an emotional rock bottom that brought me to my knees. I had gone through some pretty horrible things, aside from what I had dealt with in my marriage to Leigh. But I suffered and pushed through as best I could, praying here and there, believing that someday all my striving would be rewarded. This time, I was literally on the floor of my closet, my soul in pure anguish, crying out to God. How could this be where my best efforts ended up? Waves of regret washed over me as I begged God to forgive my mistakes and restore all that had been stolen from me. People had treated me badly throughout my life, I had sacrificed myself in a marriage where I felt like a chained ghost, believing that I had let God down by not fulfilling His purpose for me. Furthermore, I still didn't know what that purpose was. Now, there I was, trying to be supportive for my husband, who was facing a major surgery, but my heart wasn't in it. I still loved Leigh as a person, but, not the way you should in a marriage. I felt completely alone.
After that first trip to the big city, I knew I couldn't handle it. The thought of driving there and having another panic attack filled me with such dread that I decided we would take the train or I would send Leigh on his own. It was a risk letting him go alone but stepping back a bit was the only way I could cope. After Leigh had gone on his own once or twice, the transplant coordinator called and begged me to come with him. One of the other big challenges with Leigh was his inability to accurately communicate. Often, he would completely misconstrue or forget things altogether. I know that a lot of men have poor communication skills, but Leigh took it to a whole other level, and I attributed it to the fact that he was dyslexic. When you asked him about something someone had said or about something important, you never really knew if what you were hearing was true, half true, or completely wrong. When the transplant coordinator expressed her frustration, I said “Welcome to my world.”
I remember the appointment we both attended with the Director of Surgery. He wanted us to be aware of the risk, but he appeared quite confident overall. He painted a picture of how good this would be—how freeing it would be. The main danger seemed to be organ rejection, particularly with the pancreas. Yes, the pancreas was a tricky little organ.
Leigh and I discussed the risk, but he was determined to go ahead so I put aside my apprehension to support him. That vision—the one where he could drive again and didn't have to take needles or bother with the insulin pump—obscured any flicker of caution that may have danced across his mind.
The call finally came on the morning of August 1, 2013. Leigh called me at work and said we had to leave for the big city. My anxiety was starting to build again and I could feel my heart beating faster. We quickly packed and were on our way when we received another call saying that it was going to be delayed until the next morning. We decided to continue onward and stay the night so that we could be at the hospital first thing in the morning.
We arrived very early the next morning and I remember thinking how strange it was: it was almost eerie, like a twilight zone. There wasn't anyone around, and this was a very large city hospital. We reached the empty registration desk. When a man arrived, and we explained that Leigh was there for his transplant, he wasn't in a great hurry to usher us in. Again, it was strange—this wasn't exactly toenail surgery.
We were left sitting in an empty hallway for what seemed like forever. Then our daughter called us from our home, a two hour drive away. She had received a call from the hospital, the very one we were sitting in, and the transplant unit was wondering where we were! Half jokingly, I said to my husband, “Should we be going ahead with this? This is so ridiculous! We announced that we're here for your transplant, then we're left sitting in a hallway and now they don't know where we are. Apparently, the left hand doesn't know what the right hand is doing.” This was just another one of those moments where I pushed aside that little niggling sense that something didn't feel right. Even though I believed in God, I didn't recognize the sense as being His voice at the time. Other forces were at work, making it seem like the only logical choice. Leigh desperately wanted the surgery, the medical professionals were confident, all the tests gave the green light and we were there now with a pancreas and surgeons ready to go.
It took almost seven hours for a team of surgeons to weave their human tapestry—a delicate fusion of life and death. Someone we didn't know had died to give Leigh this gift, and the enormity of it was humbling. I was alone, waiting in a sort of time-suspension torture because it just didn't feel right. The cell phone woke me out of a surface sleep; it was one of the surgeons calling to say all had gone well.
When I saw Leigh the next morning, my uneasiness appeared to be completely unfounded. He was in good spirits and he was alert. I stayed in the city for a few days to make sure he was okay before going home to be with Brienne. It was my understanding that Leigh would be in hospital for a couple of weeks, and, after that, he would have to stay somewhere close by for another week or two for follow-ups. My plan was to wait for the call that he was being released from hospital before making the trip back.
At the end of the first week, Leigh phoned home to say that he was being released. I reminded him of what we had been told about him having to stay in the city for follow-ups. He insisted that he was told by one of the doctors assigned to his case that he could go home, and the transplant hospital there could do the assessments. I was shocked and skeptical. Looking back, I should have known better. I probably should have insisted on talking to one of the doctors myself, but because he seemed so certain, Brienne and I made the trip to bring him home.
We arrived and found Leigh waiting for us in the Transplant Unit on the sixth floor. I asked him if he had everything he needed; he said he did, and it was evident he couldn't wait to leave. So, we informed the staff on that floor that we were leaving, and there was no objection. Tired and overwhelmed, I didn't get into questioning him the way I normally would. Another part of it was my own lack of desire or will to continue micromanaging every detail of Leigh's life. The three of us made our way down to the main floor, and as we were getting off the elevator we ran into the pharmacist. She was surprised when I told her that Leigh had been discharged. She said there was a process for release that involved Leigh checking in with the pharmacy regarding his medications and meeting with someone about care and follow-up appointments. Leigh appeared to be unaware of any of this. At that point, my stress level shot through the roof as I realized Leigh had screwed this up. He had not taken care of all of this before we got there, and it was all I could do to focus and maintain some composure. I was left to try and sort out where we should go and what exactly needed to be done. We went back upstairs to the pharmacy and to a meeting about Leigh's follow-up appointments, which we would need to come back for. Finally, when we were finished with all that, we took a cab to the train station and headed back home.
I was starting to feel more relaxed as the train got closer to the station where I had parked the car. As we were pulling into the station, my cell phone rang. It was the Surgical Director, the head surgeon that we had met with prior to the transplant. He was angry and wanted to know why we had left the hospital! I was completely taken off guard, and I couldn't believe what I was hearing. Of course I responded with what Leigh had told me. He accused me of risking my husband's life by taking him out of hospital. So, here we were in the train station, taking turns on the cell phone being lectured and reprimanded by the surgeon. He ended up saying that we better get our butts back to the hospital. You could have knocked me over with a feather at that point. I was at my wits end, and I was embarrassed, angry and exhausted.
We bought our tickets and got back on the train. It was getting late and I didn't know where we were going to go once we arrived. I called the hospital and spoke to at least two people, explaining the situation, but they refused to re-admit him! Their explanation was that we should have prearranged accommodation. I had actually booked Leigh into a residence-type hotel starting the next week, when I had expected him to be discharged. Therefore, looking back, I'm certain he was discharged when he shouldn't have been. I was furious. Several of the staff knew we were leaving, and no one told us otherwise. Now that he was supposed to go back, they wouldn't let him in the door.
Brienne and I only had the clothes we were wearing, and Leigh didn't have much with him either. I booked us in at a hotel that was near the downtown train station. We tried to sleep, but Leigh and I were both too upset to get much rest. I kept rehearsing what I was going to say to the transplant coordinator when I saw her. It was the weekend and Leigh's first follow-up appointment wasn't until midweek. What a complete fiasco. I couldn't believe it; but, then again, I could—that is how my life with Leigh always was. This was only another lightning strike in the chaos that Leigh attracted.
We needed to bide our time until I could get us checked in at the next hotel, so we went out for breakfast and took a cab to the mall. It was apparent that Leigh shouldn't really be out anywhere; he was in a lot of pain and could barely walk. We left him on some benches while Brienne and I bought some pyjamas and supplies at the drug store, but we hadn't been gone long when he called and said he couldn't wait anymore, that he had to lie down. Leigh had no patience for me figuring out where we should go, so we left through the nearest exit we could find. As I stood there, trying to get my bearings, Leigh kept walking right out into the
intersection, paying no attention to traffic. He was narrowly missed by a taxi as we went chasing after him, yelling at him to stop. I begged him to sit down on a bench and take his medication. It wasn't a simple matter of taking something for pain. He had a laundry list of post-transplant medications, including immunosuppressant drugs that he was supposed to be taking at specific times. I walked down the block to find a taxi that would take us to the next hotel and I was relieved when they allowed us to check in early. After getting Leigh settled, Brienne and I ventured out to get some groceries to stock the kitchenette.
Finally, the day came for the follow-up appointment, and I was ready to give someone an earful about what we had been put through. However, it seemed that the transplant coordinator must have been aware of what went on. She immediately apologized and explained it away as a miscommunication for which one of the staff was reprimanded. I was still upset, but after she said that Leigh's blood work looked good and that he could go home for good, I decided I would let it go; besides, I had no energy for a fight. Oh hallelujah, happy day! The trip home was a sweet ride.