Coulda, Woulda, Shoulda

It dawned on me today that I could have prevented everything that is happening in my world. I really have no one to blame but myself. And maybe this illness. Dave's dad said to me today that he thinks Dave has likely been sick since his early twenties. I passed off his behavior as he just didn't know what he wanted to do but he loved me more than anything else and it would all be ok. He would figure it out. We would figure it out. He treasured me. Loved me. What more could I need? But some of his weird meditatey stuff, his inability to stick with any one job for very long or to complete a program at school, his insomnia, his frequqent marijuana use.... Very much symptomatic of disorganized schizophrenia. Apparently it's very easy to treat when caught early in the younger years but based on what the doctor sees now and what I have come to see while looking back, Dave has been sick a very long time. Dave's newest psychiatrist says Dave is "very sick". If he is still very sick, what am I missing? I am constantly worried that I am putting too much pressure on him but then slide back into wanting more from him as the kids dad, but also just in his assertiveness and ability to take charge of the parenting stuff. He can't. I have to let it go. If, at 19, I had been able to look at him and see that he was not a stable, reliable investment in my future then we would have broken up. He clearly was none of those things! Love. Blech. It blinded me and swept me away from all rational thought or ability to listen to my parents. Thinking about all the little seeds of this illness I can see that Dave has been sick for a very long time. Undiagnosed, and then fiercely protected by me. I hid him and our problems from everyone. I screwed up. This stupid illness wrapped itself all around me and I did nothing to stop it. I could have had a completely different life.

You had me at "I can make that move with my mind"

Mediation, Buddhism, energy, chakras and things of that sort were something I found interesting and intruiging in the 19 year old Dave. I didn't personally believe in them as I had grown up with a Christian faith which basically discouraged all of those things. But I had never met a guy of his age...or anyone of any age actually, who had such an interest in that stuff. He was gentle, peaceful and soft spoken and had been practicing meditation for quite some time, so I thought that if this was the end result of all of the above activities then maybe they weren't so bad. At times he had tried to explain meditation to me as well as how he could generate and feel energy throughout his body. In particular he would focus on generating energy between his hands. I never really bought into any of it but just accepted that this was part of his life and what he was interested in. He would demonstrate this by rubbing his hands together then placing them about 3 inches apart and then ask me to put my hand between his. I felt heat, yes, but that was logical considering he just finished rubbing his hands together. He described it as more than just that. Okay, whatever, not my thing. And I don't mean to pick apart every strange or unique thing Dave has ever done. That would hurt him and I certainly don't want to do that. But these behaviors lead to more elaborate things. Part of me still wonders if any of it were true in the ways he was describing them. You never know.... Years later, either slightly before or shortly after our twins came to be ours Dave asked me to come sit beside him on the couch. Our TV was straight ahead of us on a 100 year old shelf I had stained. From the shelf hung a wispy orange scarf. Dave asked me to focus on the scarf and tell him when it moved. Well....I didn't cue him to any movement but then he asked me "did you see that?" Dave was trying to show me that he could move the scarf with his mind. My explanation for this would be more similar to when you stare at something so long that it begins to distort. I was sad. Confused. Afraid. And then avoided the whole thing entirely. I didn't know I was such an avoider until I looked back at the mess of years of avoidance. I like to replace that thought with maybe I was a supportive wife who loved a man who had so many plans but never quite lived up to any of them. I also like to pretend that I don't look stupid in all of this. But the questions of why I did not say anything and why I did not leave sooner or ask for help sooner haunted me then and even a little now. There is no answer to these questions because I simply do not know. What I do know is that in times of hurt or crisis or anger or avoidance, I seem to focus on what needs to be done, put a smile on my face and carry on. That probably made me look like the crazy one in the midst of cleaning out our basement and storage containers full of survival supplies and five garage sales to get rid of it all. But I am not sure what else I could have done. I survived it, after all.

Illusions

I have realized that one part of this disease that can be most frustrating is the illusion of normalcy. There are periods of time and certain activities that carry on as anyone's do. Normal, every day activities that make Dave seem fine to me. Could it be the nature of disorganized schizophrenia which paints a sense of normalcy on the surface to shroud the confusion of the disease below? Or maybe it is the and routine I have built into our lives and how casually we drift toward and apart from each other for the sake of our little ones. This routine is so far from what I thought life had in store for me but it is a routine, nonetheless. As far from the my intended path as this seems to me, I recall Dave suggesting that maybe this is the way things were supposed to be. At the time, that confused me, angered me. How dare he say that the hell we have gone through was simply my destiny. But now I see that it's true. We had no choice in this disease taking over our future plans and dreams. Schizophrenia took it all away without asking my permission. So, given that aspect, perhaps the routine we have settled on, is in fact the way it was supposed to be. Dave's disease enables him to at least function and seem normal for the few hour intervals I am around him for. Maybe longer, but I have no way of knowing. During this window of time I see a fairly put-together guy. I know he has schizophrenia but I don't have to deal with the day to day realities of it and things seem normal. That is, if you would consider two exes hanging out with their children in relative harmony, normal. Since we couldn't prevent the illness perhaps this is the best way for us to coexist. The best way for him to participate in our kids lives. The best way for me to feel like things are normal. Sometimes realities are sad, but actually work when you take the time to consider the alternative. Much to be thankful for I guess, and at least I can recognize when an illusion is only that. So what does the existence of an illusion mean for Dave? Maybe he gets caught up in the illusion as well. Not sure if his short visits with the kids have lead Dave to believe that he could handle them full time or if it may have been suggested that AISH would be approved faster if he had the children. He says he truly wanted to provide me with an option for stress relief, but somehow Dave came to the conclusion that life could go on as normal if the children lived with him. My anger met feelings of horror and disbelief and pure confusion when this idea was brought forth. So casually as well. Did Dave fall victim to the small glimpses of normal that we get when he is helping the twins with dinner and getting them ready for bed? When I poured out question after question Dave had no answers for me. I believe it was the illusion of normalcy that got to him too. I fall prey to this periodically and must remind myself that all is not normal. All is not simple and easy. I can be temporarily distracted by ideas of normal but for Dave the illusion is not so easily differentiated from ugly reality. That is, there is no way he could raise our children. This is truly a sad and unexpected reality. Particularly when I made it exceptionally clear that the children would never go to live with him. We never have nor will be ever be "normal". But thankful is something each of us can try to work into our lives. Some days it's easier than others.

God

I've always been interested in the way that God permeates mental illness. I believe in God. I believe that He can speak to us in all sorts of ways. I believe that those who have faith and are committed to a relationship with God can truly feel and see his presence in their life and the world. So I am always curious about His appearances in the lives of people with mental illness. Dave and I walked a path toward faith for awhile. After a year or so of living in our very quaint little community we began attending church. I'm not sure if Dave was atheist or agnostic or just didn't think that Christianity had the monopoly on life everlasting, but we definitely came from very different religious backgrounds. So I was hopeful when we attended a course together and it seemed that our faiths were aligning. I had always wanted to share my faith with my husband. Unfortunately it didn't last long and Dave veered in another direction after our pastor said something negative about Buddhism. Then Dave's faith made a come back about a year later when his passion for saving us from the world ending was peaking. He believed that God wanted him to create a safe space for us and as many people as we could help, to live in when the world began destroying itself. Okay. So many red flags now but at the time I was submerged in this world he had created. I had no idea the depths to which his planning was going. So, through his most sick times Dave had a "God connection". Where did this come from? Was it real? Was it demonic? Was it something his mind had created as rationale for his actions? I'll never know. There was one time when I came up to Calgary looking for an apartment to rent and I asked him to come with me. This was at a time when he was living with family and was supposedly on medications...which he wasn't taking. Anyway, his "crazy" was continuing and as usual he was fairly good at hiding it. But on our drive around the city, at one point his eyes got all glossy and he began telling me how God was telling him things. There was such an eerie feeling in the car, almost palpable and it scared me. I don't remember the conversation exactly but I do recall telling him I didn't want to talk about that anymore. I had actively shut down that chapter of my life and I had no desire to continue it. Clearly Dave was still very sick but he was no longer my problem. Nor did I have any link to his psychiatric clinic or a contact to anyone who would listen. I couldn't deal with him anymore. But now, thinking about what that would feel like... Imagining for a second that I was hearing God's voice, or feeling like God was prompting me to do something....believing it was real and clear as day...that would be really overwhelming. Very compelling. And I could see this in Dave's eyes. He really believed it was true and what lowly human would disobey the very clear and compelling voice of "god". Dave's delusions were very very strong. Terrifyingly strong. Strong enough to bring about total collapse of our life together. I don't ask too many questions these days but once inawhile I'll ask him if he still does his "science stuff". He casually says no, seems almost bored with it. And who's going to argue with such a nice, easy going guy? I have no idea what he does when he's not with me and the kids. Not really sure why I ask.

At the Core

I don't think that schizophrenia has changed who Dave is at his core, but it changed almost everything else surrounding that core. With everything else altered, that core human being can't function as he once did. Dave was always so good at taking care of me when I was sick. He would cater to me, wait on me, take away all the worry and minimize the effects of whatever illness I was suffering from. He loved me....held my hair and rubbed my back while I threw up, rushed around trying to get me whatever I needed to help me. I knew that if I was staying home sick he would set up our bedroom for me with the laptop to watch movies, or at times he actually brought a tv up to our bedroom with a tall stack of movies for me to watch. He'd make tea, make soup, go to the pharmacy and get me medicine, make a nice hot bath for me, rub my feet, tuck me in bed. He did all of that for me. For several years! I got quite accustomed to that pampering. I loved it actually. I miss it and feel profoundly more alone when I'm sick, as I am now and have been a lot in the last couple months. I still feel that is who he is at his core. An immensely loving man who wants to care for his children. But he can't do that for me anymore. As Dave's illness progressed he still tried to care for me but it became rushed. He always had something else to do. Something else to get to. So the tuck-ins became more rushed, but he tried, that's for sure. It must have been difficult with his mind going a mile-a-minute and me trying to get him to sit with me and do the baby journal we would read together each night when I was pregnant. He would sit with me, however distracted and we would reach each day about what was happening with our babies as his mind was simultaneously pulling him away from me. He felt such stress and pressure to work on his science and math that he never did complete a page in the journal meant for the daddy to fill out. As the last few years of our marriage went on, I can now see how the disease crept up over him and grasped him, pulling him away. After the babies were born he tried so hard to do his 4 hour shift with the babies so I could sleep a little. I remember one night waking up after a blissful 6 hours of sleep to find that he hadn't slept at all, did two feeds with the twins all the while working on his science. It was chaotic. But amidst the chaos he always tried his best to take care of me. Now his mind is slower, possibly clearer, and he does what he can to help with the kids which sometimes feels like very little and other times it is a lot. But I can tell that multi-tasking is very hard for him. Well, its hard for many people not suffering from schizophrenia, but I've seen a decline in his ability to multi-task from where he was previously. I no longer have my husband, but at least the kids have their dad.

unpredictable

When there are so many good days, it still comes as a disappointment when a bad day arises. This is the unpredictable reality of mental illness. On his meds, Dave is more or less maintained. His meds keep him at a level where he can care for his daily needs, take care of the kids for limited periods of time and help me out with chores if I'm getting run down. And I've become used to this. I like the help and appreciate it. So this morning when my kids were too sick to go to their dayhome and Dave didn't answer his text my heart sank. I knew it, but called him anyway because I needed help. And I knew for sure when he answered the phone. The bad days creep up and cover him in a drape of darkness. That's how it feels to me anyway...so I know I can't ask anything of him. It's a difficult reminder of our truth. That this is with us forever. That I can't rely on him. At least not for awhile until the darkness fades and I once again get a glimpse of the guy I once knew.

A light in the shadows

Amidst the diagnosis and permanence of schizophrenia, there is light. For an almost ex-wife; for the father of my children; for the children. A light that makes me wonder about the what ifs. Like what if we didn't fall apart? What if we were still together? What if I hadn't stopped loving him? These flashes of light are beautiful, where I can see the Daddy my kids deserve and I can communicate with a man who seems really familiar. We are lucky, Dave's schizophrenia isn't severe. At least not in the hours I am with him. He is well maintained it seems, and I feel so blessed that he comes over so often and helps me with the kids. I'm always watching, listening and observing how he interacts with the kids, what he says to them, what he feeds them, how he speaks to them. Today and yesterday he did great. Reassuringly great. It encourages me and makes me feel good about him caring for the kids, yet I don't get comfortable in that comfort. Because I know he has off days, but I also know the off days seem fewer and fewer. Maybe there is potential for things to get even better. I don't know. And I wonder about the 22 hours of each day that he isn't here. I would like to think that he is honest in the stories he tells me but I really don't know what he does. I wonder if his room is full of notes and scribbles and calculations. If he cleans it or if his room is a wasteland of a mess. I wonder what he feeds the kids when I'm not home. Does his illness allow him to organize himself with the kids? All I know for certain is when I come home they are happy, excited and slightly dirtier than I would have them. I know that he loves our children more than life. He showers them with love and attention and enjoys every minute with them. That is more than many can say, mental illness or otherwise. Maybe it's luck, or a blessing, or karma or whatever you believe in, that this disease could permeate our lives, our marriage, our family but could still end up with a pretty workable situation. I think it was forgiveness and willingness to move forward and put our children first that got us here, over the mountain of tears and pain and learning and struggle. But I'm so thankful we made it here and hope we can continue to build on it.